tag:blogger.com,1999:blog-87494367072052974922024-03-14T07:52:53.665+00:00Chris's Cancer CommunityChrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.comBlogger166125tag:blogger.com,1999:blog-8749436707205297492.post-44675398097636965502014-03-09T12:15:00.000+00:002014-03-12T18:42:20.915+00:00An emotional time!<span style="font-family: Arial, Helvetica, sans-serif;">If I'm honest, I can't believe this time has come. When this blog was started, two years ago, I had never written anything since I was at school. People were asking me about my experiences but I had no idea, how to use social media etc. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">The rest as they say is history. This platform has been brilliant for me and the readers. I wanted to keep things simple, and it is all about the content. I have kept things as basic, and as user friendly as I possibly could. But times change, and I now require my own website, to expand my work, and bring things up to date. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">For me it is all about content, which will always be the case, but I have tried to create a more modern look and feel about the site. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b>Those of you that follow the blog will have to re enter your email address into the new website to ensure that you get the new posts in the same way you currently receive them. I do apologise but there was no shortcut to that process!</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-axJG7lCxupE/UxxWjDgwMKI/AAAAAAAAAlI/9BJQhzU4gpM/s1600/Logo2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-axJG7lCxupE/UxxWjDgwMKI/AAAAAAAAAlI/9BJQhzU4gpM/s1600/Logo2.jpg" height="163" width="640" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b>I would like to take this opportunity of thanking you all for your continued support , and I hope that you continue to enjoy my work on </b></span><br />
<b style="font-family: Arial, Helvetica, sans-serif;"><span style="color: red;"><a href="http://www.chris-cancercommunity.com/">http://www.chris-cancercommunity.com/</a> </span>where you will find this weeks new post. ' Raising awareness, new boundaries?' Plus the entire archives of this blog! </b><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b>With grateful thanks, Chris </b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com2tag:blogger.com,1999:blog-8749436707205297492.post-24176611510278904242014-03-02T09:52:00.000+00:002014-03-02T09:52:46.319+00:00Caring for the carer <span style="font-family: Arial, Helvetica, sans-serif;">This week I am delighted to have the opportunity to write a piece about carers. Firstly I would like to say that this is not a word that I like personally, although I have thought long and hard over many years, to find one better! <b>When I was younger I always visualised a carer being someone who would look after me in my old age.</b> I certainly never imagined I would need one at the age of 51. Neither did I think that person would be my wife.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">There are many people who are carers, and wouldn't recognise themselves as such. Without these wonderful people, our society would be a very different place. This is before you include the professional carers, that help our sick and vulnerable people. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Without these people, many would have a much poorer quality of life.In my own example, if my wife didn't do so many things for me, I would not be able to continue with my support work. I often think, wherever we go, that I, as the patient, get all the attention.My medical team, look after me, as a VIP, and socially our friends always ask how I am, but my wife is rarely considered. In many respects taken for granted.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Most people looking after friends and loved ones do that willingly, selflessly, and with very little thought for themselves. Their roles can be short term or last for a lifetime. They just do what is necessary. Certainly they do not look for any recognition. <b>My worry with this though has always been, that if they don't recognise themselves as carers, they may not realise that they also need help. </b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-0xVnvgjS3ew/Uw805ebFBBI/AAAAAAAAAjY/S9sxXULK0q0/s1600/Carers+post.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-0xVnvgjS3ew/Uw805ebFBBI/AAAAAAAAAjY/S9sxXULK0q0/s1600/Carers+post.jpg" height="268" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;">This week I am honoured to include this guest post from Jayne Cox,who amongst her many roles, delivers workshops to both carers and patients at her local hospice. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>Caring for the Carer</u></b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>As a carer you have a vital role in someone’s life. It can be an ever-changing role and may be driven by your love but also requires your dedication and strength to carry on with what can feel like a difficult full time job. Your place in someone’s life can feel as if it’s changed and your relationship quite different now that you not only love but also provide care on so many levels.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>So how do you remain positive and find inner resilience as a carer? Let me share some practical ideas with you.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>1. ‘It’s really not fair’ and it’s ok to feel this and to say it out loud. Allowing your natural feelings to be shared is a step in the right direction. When you’ve acknowledged how you feel it allows you to move forward.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>2. Think about who you have in your life. Who will allow you to speak and will really listen to you? This may be people you know well OR people that are almost strangers. </i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>3. Some people benefit from meeting with other carers. This can help with the feelings of being isolated and alone. Ask about local groups.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>4. Most of us can find resilience in the most difficult of times and it’s good to develop this habit. You can accept that life is changing and learn to adapt. It’s good to discover the things that you do have control of in your life. Notice ways to feel more of a survivor than a victim of a situation. Learn to problem solve and ask for help.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>5. Look for ways you can have some normality in your life. For example, socialising, work, hobbies, self care.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>6. Are your spiritual needs met? It can help to explore what spirituality means to you. More here</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>7. Take walks outside and enjoy open spaces and fresh air.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>8. Notice good things that happen in a day with your loved one. Write it down and recall the moments.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>9. What are you grateful for? This is a lovely way to end the day and again writing it down has more of a positive impact.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>10. Allow your natural thoughts to be noticed and see if you can give some distance to any difficult thoughts. Imagine balloons containing your thoughts, which will you hold onto and which ones can you allow to float away. Mindfulness and meditation are good practices and there are apps for your phone that mean you have them close at hand.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>11. Find some balance. This can be keeping busy and productive balanced with rest and relaxation.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>12. Practice rational optimism. This is accepting of reality, having hope and seeing that life is for living.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>13. Make time to be together and focus on what you can do.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>14. It’s ok to want your own space. It’s natural to sometimes need silence and quiet. Notice if this becomes unhealthy and you withdraw and reach out for support.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>15. There are 2 special P’s that can really help us feel much brighter. Pets and People. Stroking a pet or spending time with animals can change how we view things and relieve stress The right people, supportive and positive listeners, are a great asset too,</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>16. Remember caring for you allows you to care for another.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Caring isn’t easy and it’s not possible to be positive every minute of every day. It’s often about drawing a line under the bad day and remembering the sun will come out again.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><u><i>Recommended support:</i></u></b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Carers app called Jointly https://www.jointlyapp.com/#welcome</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>10 steps to more resilience http://psychology.about.com/od/crisiscounseling/tp/become-more-resilient.htm</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Exploring Spirituality http://www.mentalhealth.org.uk/help-information/mental-health-a-z/S/spirituality/</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Carers support</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>http://www.carersuk.org/support</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>http://www.mind.org.uk/information-support/helping-someone-else/how-to-cope-as-a-carer/#.UwIgortvsXg</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">It has been a great pleasure to share this piece, and if you would like to contact Jayne and find out more about her work, you can connect <a href="http://jaynemcox.com/">here</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div>
<br /></div>
Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-78153380169381138792014-02-23T10:56:00.000+00:002014-02-23T10:57:43.821+00:00Sharing a cancer experience<span style="font-family: Arial, Helvetica, sans-serif;">Having been unwell for most of December, and early January, I made a deliberate plan to not chase any more commitments for the new year. I had cleared my diary, and had completed my work. Although I had few speaking engagements on the horizon, my blogging and social media work, quite quickly fill up the gaps in between my treatment sessions, so there is always plenty to do. I wanted to give myself some time to think about the coming year.</span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">However, my speaking engagements are really what helps my work come alive, and makes my blogging etc feel real. It is an opportunity to hear other peoples experiences, who, through me sharing my story, have felt able to talk about their own. I have been doing presentations for many years now, and the beauty for me is that each one is unique. I talk to health professionals, and patients young and old, also at fund raising and business functions. From every presentation I give, I learn something new.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">This week I had the pleasure of sharing my experience, with a large group of interns, coming to work for a UK cancer charity.For many of them, it was their first ever in depth look at the effects of cancer on someones life. Although, it is never safe to assume that even with a young audience, there is no one who has a personal or family experience. That has happened to me several times.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-1ef-w4BEmNM/UwnRbRQORjI/AAAAAAAAAjI/yIMAS6n3FCk/s1600/Sharing+a+cancer+experience+2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-1ef-w4BEmNM/UwnRbRQORjI/AAAAAAAAAjI/yIMAS6n3FCk/s1600/Sharing+a+cancer+experience+2.png" height="254" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">After this particular presentation I had time to think about things, as I went straight to a session of treatment.The audience was very receptive and enthusiastic, and many spoke on Twitter about how they had learnt a lot from it, which is great.However my thoughts turned to the frequency with which I share experience and information about cancer.I now speak or write about it, daily. Not only that, I am in a cancer environment for 5 days every month, having treatment, during which time I am talking to both professionals and patients.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b>I am aware that I have become 'comfortable' talking about almost any aspect of the disease.</b> However, what struck me this time, was that people may not be so comfortable listening to certain things.<b> What has become 'normal' for me, is far from normal for most people. </b>Obviously, if you attend a presentation where someone is talking about cancer, to a degree you know what you are going to get. Also, if you don't like the content, you won't read a blog. But I was thinking also about my social life.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Maybe people don't want to know some of the content, that I tell them? Most will not be used to hearing some of the detail. My natural way of communicating is to tell people the facts. My thinking behind that was to help people understand what was happening.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: Arial, Helvetica, sans-serif;">Sharing something like a cancer experience, is a very personal thing. Some people don't do it at all, not even with their partners! Others keep things within the 'friend and family network.' Some like me share most things, and more. I happen to feel that talking about these things publicly, will help raise awareness of the issues, and improve things for the next generation, but not everyone would agree. </span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-BNjkO2_5tq8/Uwi1KdMDbMI/AAAAAAAAAiw/GWuMG3FhaGs/s1600/Sharing+a+cancer+experience+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-BNjkO2_5tq8/Uwi1KdMDbMI/AAAAAAAAAiw/GWuMG3FhaGs/s1600/Sharing+a+cancer+experience+1.jpg" height="224" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Blogging has become one of the most popular ways of sharing experience. Even in the two years I have been writing I have noticed, a vast difference in the quantity, and detail of what people share. It has become much more acceptable to share very intimate details of treatment and emotions. But of course, in this instance you have a choice, whether you follow a particular blogger or not, if you like that open style of communication. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Face to face work is very different. But in many respects I find it easier. I can generally feel a mood in a room, and by looking at peoples body language as I speak, I am able to tailor the talk to suit, the audience. But one of the biggest hurdles to overcome in a group situation is that many people are still uncomfortable talking in public. Always when a talk gets opened up to questions there is normally a slight hesitancy from the audience.Afterwards though, many people want to talk!</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">The beauty of the platforms available on social media,is that people can take as much or as little as they require.They can stay anonymous if preferred, or go public if comfortable. They don't have to enter a situation where they feel uncomfortable. It is important, psychologically, to share things, even if it is only with people on the Internet. We never stop learning, and for me, hearing other peoples stories, really helps me to make sense of my own. If I can do the same for others, I will be a happy man! </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Do you find it easy to share your experience? Is it of benefit to hear from others about theirs? How important is the internet, in how you give and receive support? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">You can now join us on<span style="color: blue;"> </span></span><a href="https://www.facebook.com/chriscancersupport" style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;">FACEBOOK</span> </a><span style="font-family: Arial, Helvetica, sans-serif;"> too! </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-19136393750061124082014-02-16T13:21:00.001+00:002014-02-16T13:46:48.831+00:00The power of nature! <span style="font-family: Arial, Helvetica, sans-serif;">In the last couple of months the weather has been absolutely crazy in the UK. I don't think I can remember such a prolonged spell of wind and rain, in my life time. I have seen pictures of flooding and damage, that I could never imagine I would ever see, and in recent days, we have been hoping that our house withstands the constant battering we have received from the wind. So many peoples lives are being scarred by these events.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I have heard talk about long term plans, and Governments not spending money, so many different reasons for why we cannot cope with these circumstances. I'm sure you will all have your own ideas. Building on flood plains, dredging rivers, flood defences, the list goes on. I seem to recall we all had different answers when a few years ago, we were affected by blizzards. Not enough salt, services not reacting quickly, no snow ploughs, not enough investment. It seems we can always blame the Government!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">However, I ask myself, does man always have the answer to what nature delivers? Sure, we can solve many problems nowadays with our extended knowledge, and technology, but it does seem that if nature really wants to do something, there is very little that man can do about it. Much as we have known for sometime what our weather will do, there is very little we can do to prevent the devastation that will occur.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-Jd_FdHKS9fY/UwC4vb1qcgI/AAAAAAAAAiY/lCTuw7mGHmE/s1600/The+power+of+nature.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-Jd_FdHKS9fY/UwC4vb1qcgI/AAAAAAAAAiY/lCTuw7mGHmE/s1600/The+power+of+nature.jpg" height="207" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Like a lot of people recently, I have stood by helplessly, watching the havoc taking place, and apart from a few obvious precautions I could take, there was little I could have done, if my own house had become directly involved in the crisis too. That feeling of helplessness is frightening. It feels like 'control' has been taken from you. It also makes you realise how insignificant we can feel.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">During my illness I have experienced, many similar emotions to the ones I have recently.Despite very comforting words from Health Professionals, no one really knows how the disease will behave. We certainly have statistics, to act as a guide, but that is all it really is. Every case is unique, and we all react differently to things. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">There are times when you just have to have faith. Not necessarily religious, but many people do. Confidence, in your medical team, and the treatment they are giving you, and a belief that the best outcome will be achieved. But no matter how many new ways we find to treat cancer, it is a powerful adversary, and we can rarely be entirely confident that we have controlled things for long. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-nc0cTlE4tSw/UwC5doE2uII/AAAAAAAAAig/wN7iPdF9C00/s1600/The+power+of+nature+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-nc0cTlE4tSw/UwC5doE2uII/AAAAAAAAAig/wN7iPdF9C00/s1600/The+power+of+nature+1.jpg" height="212" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Nature is not only a powerful enemy but at times a powerful friend. Helping you recover, from illness and giving you strength when you thought there was none. It also seems to have a unique way of teaching us lessons. I am currently writing this piece, in glorious sunshine, but reflecting on the things I have learnt in the last few months.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">In the cancer world, we have an incredible amount of man power, and financial resource, going in to deal with it, yet it continues to leave it's trail of devastation. Of course, we have to continue to believe we can find a cure, and treatments that will behave kinder on patients. This is always how man works. We try our hardest to achieve what seems impossible at times. I guess if you don't head for the stars you will never climb a hill. In my own relatively short lifetime I have seen so many things happen, that I would never have thought possible. A testimony to man's persistence!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">However, I have come to the conclusion that despite all the meddling by mankind, nature will do what it wants, and we will have very little say in matters. We will always believe we are influencing certain things but I feel that is only a perception, and a far cry from reality. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I hope that you haven't been affected too badly, by this crazy weather pattern, which has affected many countries across the world. Please feel free to let me know your opinion of our relationship with nature. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">It would be great to connect with you on <span style="color: blue;">Facebook </span>too!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"> </span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com0tag:blogger.com,1999:blog-8749436707205297492.post-5942392377785418582014-02-09T13:10:00.000+00:002014-02-09T13:21:40.494+00:00Blood cancer and stem cell transplants <span style="font-family: Arial, Helvetica, sans-serif;">Although I had decided this weeks blog subject, very early on, I am always open to flexibility, if something important comes up. It did, but ironically it included the subject I had decided to write about! Via Twitter, I received a link, to another blog, written by an incredible young lady, who had experienced personally some things, which confirmed the subject matter of today's post. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">This week I wanted to focus on how lives can be affected as much by the treatment they receive, as the cancer itself. I have spent the last 4 years, having treatment for the side effects of the original treatment I had, to keep my cancer at bay. During this time I have met, and continue to meet, people affected similarly to me. My body, frequently wants to reject, the stem cells, that have been given to protect me, causing many different issues at any time. There is rarely a warning, when this might happen.</span><span style="font-family: Arial, Helvetica, sans-serif;">(<b>G</b></span><b style="font-family: Arial, Helvetica, sans-serif;">raft versus host disease,</b><span style="font-family: Arial, Helvetica, sans-serif;">)</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Recently I have met several people, who through treatment, are unable to do their work. Careers, which they have trained for when they were young, and spent their lives developing their skills, enabling them to provide for their families</span><b style="font-family: Arial, Helvetica, sans-serif;">.I have met a builder, who is now so weak, he can't even pick up a hammer, and a writer who has the disease around his eyes. He can't see without the continual use of eye drops. </b><span style="font-family: Arial, Helvetica, sans-serif;">Both these guys, like me, are into their 50s now, with no end to the treatment in sight. They want to provide for their family, and do the normal husband/father things.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-aevfAQfbu7M/Uvd7wYWz7RI/AAAAAAAAAiI/Tyjg49k-jnY/s1600/Blood+cancer.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-aevfAQfbu7M/Uvd7wYWz7RI/AAAAAAAAAiI/Tyjg49k-jnY/s1600/Blood+cancer.png" height="234" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Below is an excerpt from this wonderful blog by Kathryn, and describes how GvHD has affected her</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>In August 2007, when I was sixteen years old, I was diagnosed with Acute Myeloid Leukaemia M7 with monosomy-7. I started chemotherapy on GCSE results day. I had one course of one regime, then a course of a harsher one, then in December 2007 I had some pre-conditioning chemotherapy and on the 19th, I had a stem cell transplant from my big sister. I recovered fantastically well and went home on New Year’s Day, celebrating just how easy this cancer business had all been.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>In April 2008, I noticed some lumps in my face. I had one biopsied, and it turned out to be a malignant tumour. A bone marrow aspirate and trephine confirmed that my marrow was indeed full of leukaemia again and I was given a 1 in 5 chance of survival. My only option was another stem cell transplant from an unrelated donor – using my sister wasn’t an option this time as she had been too good a match, so I got no Graft vs. Host Disease which would have caused Graft vs. Leukaemia and killed any cells that were lurking. This time, I had much more toxic chemotherapy, plus a week of radiotherapy, and on July 31st 2008, I had my second stem cell transplant from a young German fellow. I got GvHD in my skin and we were delighted. Until it got worse and it became incredibly itchy and painful. I also got it in my gut, but it was all treated with IV steroids and after about six weeks, I went home.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/--gtwCwUHnGI/Uvd7k_T8JmI/AAAAAAAAAiA/taTuaptT-98/s1600/Blood+cancer+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/--gtwCwUHnGI/Uvd7k_T8JmI/AAAAAAAAAiA/taTuaptT-98/s1600/Blood+cancer+1.jpg" height="219" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>I was doing very well, until September 2008 when I got GvHD in my eyes, which meant I lived in the dark for a month and in tremendous pain, until I had eye drops made from my own stem cells from my blood, and they cleared it right up. (Incidentally, this is no longer given automatically and you have to apply for funding to get them, leaving people to develop scarring on their eyelids while they wait. Well done, government.) Then on October 31st 2008, I spiked a temperature, we went to A&E, and I didn’t get discharged until June 11th 2009. I had GvHD of the gut pretty badly, and of the liver in the worst way. In the fatal way. I was unable to eat because my stomach had no enzymes to digest anything, and I was turning more yellow-green by the day. </i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>At the beginning of December, my bile ducts had shrivelled away to nothing, I was being poisoned via my own bloodstream, and I was put on the list for a new liver. I got it on the 21st. The doctors had told my parents it was unlikely I would see Christmas. The liver came from an O-neg donor, and I was A-pos. This is not routine; O-neg can only receive from O-neg, so they only give them to other people when they’re nearly dead. At this point, the haematology doctors were still looking after me too, and the discovery was made that I’d had a third stem cell transplant by accident. The stem cells from the liver had gone to my bone marrow, kicked out the German, and completely changed my DNA. I’m the only person in the world all this has ever happened to.</i></span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Being in contact with Kathryn this week has given me the opportunity to talk about some of the issues involving blood cancers and stem cell transplants. Like most things involving cancer, the results are unique to each person, and we rarely know what to expect. Of course we are all grateful for the extended life we may receive, but that can be very far from the end of the story! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">For more information about Graft versus host disease click <a href="http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-physically/gvhd/about-graft-versus-host-disease">here </a></span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">My grateful thanks to Kathryn, for allowing me to share her work. If you would like to read more please click <a href="http://kathrynstransplants.wordpress.com/">here </a></span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can also join us on <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">Facebook</span></a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com0tag:blogger.com,1999:blog-8749436707205297492.post-5025625884655605092014-02-02T10:16:00.000+00:002014-02-02T10:16:20.938+00:00Dealing with a cancer diagnosis <span style="font-family: Arial, Helvetica, sans-serif;">Last week I wrote about my experience of talking to two people who were newly diagnosed. How I felt that even after so many years, there just was not enough support for people facing cancer treatment. Despite our many years of experience, generally, people are still left to face a traumatic time on their own.What really shocks me about that, is when I use my own personal experience as an example.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">My diagnosis involved stage 4 incurable cancer. No one knew if I would live or die. Everything I was facing was a totally new experience, and despite the fact I was 51, it was really frightening! That was only the treatment etc, not even including losing my job, income and all the things associated with that. I was introduced to a specialist nurse, who was lovely, but told me so many times how many patients she looked after, so I gave up even trying to talk to her. I decided, that like most things in my life, the only person who could sort things out was me. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">But I was equipped for this sort of challenge, in a strange sort of way. I have always worked for myself, and have rarely had to rely on other people, so another system that was inadequate was not unusual. However for others, who might expect and require more support than me, I'm sure the entire experience comes as a complete shock. What makes things worse, as far as I am concerned is that my own issues started seven years ago, and in honesty, although, medically many things are improving rapidly, the basics of support are not! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-S1w_qo28r5Y/UukPDOHCQgI/AAAAAAAAAhc/9_IHQpr-12E/s1600/Dealing+with+a+cancer+diagnosis.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-S1w_qo28r5Y/UukPDOHCQgI/AAAAAAAAAhc/9_IHQpr-12E/s1600/Dealing+with+a+cancer+diagnosis.jpg" height="212" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">As I also say frequently, my opinions are based on not only my personal experiences, but also many other people who I am in contact with, either personally or via social media. This week I am highlighting another example of how people can react to a cancer diagnosis. Emily is an incredible young lady who was diagnosed in November 2013 with endometrial (uterine) cancer and colon cancer. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><b>"Tonight, I broke down. I don’t know what exactly sparked it, but tonight everything just hit me like a ton of bricks. It finally settled in my mind. I have cancer. I am going to have to endure probably the most grueling year of my life, and then who knows what I’ll be like when it’s all over? Will be I able to go back to the same line of work that I intended? I know my job won’t be there when I get back. I had just started. It’s not one of those jobs with real job security anyways. They’re not obligated to save a spot for me until I get back like at some other jobs. I’m not on that level yet. </b></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><b><br /></b></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><b>When all this is over, what will I be left with? A few less body parts than I started with, the inability to have kids, but hopefully my life. I probably won’t be able to see a lot of my friends for a while. I won’t be able to be as independent as I want to be. I don’t know what freaked me out so much in particular, but I had one of those deep sobs. It hurt — seeing as I just had surgery last week — but it also hurt because I felt like I was in some kind of box that no one around me could get into. Like no one could quite understand exactly what I was crying about. Heck, neither could I. But tonight, I don’t feel strong. Tonight, I feel sick. Tonight, I feel weak. Tonight, I feel scared."</b></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><b><br /></b></i></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-0nofJcgc3sw/UukaoaHXzPI/AAAAAAAAAhs/vqUhdYk44Xk/s1600/Dealing+with+a+cancer+diagnosis+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-0nofJcgc3sw/UukaoaHXzPI/AAAAAAAAAhs/vqUhdYk44Xk/s1600/Dealing+with+a+cancer+diagnosis+1.jpg" height="238" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><b><br /></b></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">This young lady has the world in front of her, but is now facing her biggest challenge. What can equip her for the experiences that may lie ahead? Being younger, Emily faces many unique challenges, associated with her age, which us older people don't. She will require very specialist, age appropriate support.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">The fear which Emily describes graphically above, is just another example of how a lot of people are feeling when faced with a cancer diagnosis. I wanted to share it, as much for people who have been lucky enough not to be in that position, as I feel it sums things up brilliantly.There is support out there, but it is very hard to find. I also appreciate the issues involved, as every experience is unique, and a generic approach is no longer appropriate. But in many cases, the psychological and emotional fallout from cancer, can have a more negative effect than the cancer itself. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">My personal view is that a much earlier support intervention, where required, will improve things for people. I'm sure that is not the complete answer, but I do know that we cannot let things continue as they are. Unfortunately there will be very many more people entering the process, and they will need some help. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">What was your experience, on diagnosis? How were you feeling, and what help did you find? Please feel free to share your experience with the readers. You can also join us on Facebook<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">here</span></a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">If you would like to read more about Emily, you will find her blog <a href="http://seegirllive.wordpress.com/">here </a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com2tag:blogger.com,1999:blog-8749436707205297492.post-50929151086776368612014-01-26T10:36:00.002+00:002014-01-26T10:36:33.687+00:00We have the tools and things must improve! <span style="font-family: Arial, Helvetica, sans-serif;">This week has been treatment week, so Monday and Tuesday are filled up, but I always try and make the most of my time, and am generally communicating via Twitter or talking to staff and patients. I have a continual thirst for information.I managed to talk to a good number of patients, and also a couple of very senior Health Professionals.</span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">As you know, my<b> </b>'crusade' is to improve support for people affected by cancer. Obviously, I make my own observations of things, during my endless visits to hospitals, but I am intrigued to see how other people view their situation. Do patients feel that things could be improved or are they content with what is being done? I also wonder if Health Professionals feel that more should be done, or they believe that the right quality and quantity of support is available.</span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">I was lucky enough to talk to two inexperienced patients this week, in very different settings. Both had diseases and treatment plans similar to my own.I don't know why, but I am always shocked at still, how little support people receive, outside their family and friends.It seems they have had a couple of brief chats, been given some information booklets, and then put into the system.Of course, although advised not to, most people take to the Internet to find out more,and that's where the troubles begin.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-ETYWaT5P8cQ/UuOzbWy7hUI/AAAAAAAAAhE/6VpizpATR3w/s1600/We+have+the+tools+and+we+must+improve.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ETYWaT5P8cQ/UuOzbWy7hUI/AAAAAAAAAhE/6VpizpATR3w/s1600/We+have+the+tools+and+we+must+improve.jpg" height="320" width="318" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Information, is only part of the story of support.We also need help once we have the information. It really feels like it is assumed the job is done, when you have been handed some books about your disease and treatment. Sure, we have come a long way, as even only ten years ago we were struggling to find any good information.But now we are swimming in it. Booklets, constantly updated and minute by minute news on the Internet.However, we need to progress from here! </span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Much more practical support is required.We actually need to invest more time in each patient, to help them through their psychological and emotional issues.To understand them as a unique person, not just a case file. We have to prepare people as best we can, for their treatment, and offer support as they continue on their path. In this day and age it is not right that we still see so many frightened people, starting treatment, because we most definitely can do more. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Not only on the treatment path is this true, but it gains momentum, once you leave the perceived safety of your hospital. In most cases, once the clinicians have done their work, you are let loose, to make the best of things, in what is very definitely a new world for you.Now with different information in your hand, you try and put your life back together.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">The people I have talked to this week, describe, their views, of disjointed services, and poor communication. Almost finding people, by trial and error, meaning some maybe lucky, and others not so. Is it any wonder that people will then keep returning to the hospital, many with issues that could quite clearly be sorted at home or in a community setting. <b>No one wants to be dependent on the system, but currently it is not helping us be independent.</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-MHmM7PNqqrM/UuOzrDY5DHI/AAAAAAAAAhM/ggMQNJJz6R0/s1600/We+have+the+tools+and+we+must+improve+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-MHmM7PNqqrM/UuOzrDY5DHI/AAAAAAAAAhM/ggMQNJJz6R0/s1600/We+have+the+tools+and+we+must+improve+1.png" height="265" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">As a business guy I understand the many issues involved here. Primarily of course finance. However sometimes with a different way of looking at things, there are ways of solving problems without spending stupendous amounts of money.</span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">More people are being diagnosed, with cancer, and with advances in treatment, are living longer with the effects of it.There are many people like me, out there who would happily share experience, for the benefit of others, at whatever stage it was required. We are already doing 'buddying,' etc, but not really to the level required, and there are many different ways that experience can be harnessed, particularly with the use of social media.</span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">The N.H.S do their thing, and charities do theirs. Sometimes they collaborate, sometimes they don't. Pilot schemes come and go, support groups open and close. Who takes responsibility here? Sometimes there can be so many organisations involved in your care, you get frustrated, as no one appears to take charge of your case. All designed to help you, but rarely coordinated, and more a scatter gun approach. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">I am certain, that if more of the right support was given, there would be less of a burden on the system in the long term. But more importantly, more people would have a greater feeling of worth about their life. It is a wonderful thing to be given extended life, of course, <b>but sometimes it can be very difficult making a new life, whilst trying to deal with health issues from the old one.</b></span></div>
<div>
<br /></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">These are thoughts I have gathered, over the last few weeks, through my personal experience. What are your views? Perhaps you have a positive story of support you could share? I look forward to hearing from you. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">You can also see more of my work on my new <a href="https://www.facebook.com/chriscancersupport?ref=hl">FACEBOOK</a> page. Many thanks for your support.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
</div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-37912998308164701032014-01-19T11:01:00.002+00:002014-01-19T11:01:37.579+00:00The stigma of a changing appearance.<span style="font-family: Arial, Helvetica, sans-serif;">As I have mentioned, several times in the past, I never have to think too hard about blog content for the week, and very often one subject gets talked about more frequently than others. In this instance the subject is <b>'appearance during cancer treatment.'</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">On my return to treatment in the new year, I met a fellow patient who I hadn't seen for some time, and I struggled to recognise her. I was truly stunned how her appearance had changed in such a short space of time.Very little is able to surprise me, in terms of the affects of cancer and it's treatment, on people, but this time I was. I knew that I had been through everything that she was going through, and all the changes in my appearance. But why was I shocked?</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-hCZws3_qcqo/Utpxe87ZfXI/AAAAAAAAAg0/a3dkEcgQAbY/s1600/The+stigma+of+a+changing+appearance.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-hCZws3_qcqo/Utpxe87ZfXI/AAAAAAAAAg0/a3dkEcgQAbY/s1600/The+stigma+of+a+changing+appearance.png" height="248" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<span style="font-family: Arial, Helvetica, sans-serif;">This made me think about how people who were much less experienced than me, might react when faced with one one of their friends who was going through treatment.My family and friends have been through this, and at times still see changes in me depending on my treatment, but I have never noticed any visible signs of shock. Now I fully understand what they must be feeling.I am always aware that with cancer as my constant companion, I am much more accepting of things, than people who have very little experience. Sometimes I forget that. Things that are normal for me in my work, are not normal for most people, so of course their reaction will be a lot different to mine.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">I have been contacted by several people this week, who wanted to talk about issues surrounding their appearance. One lady in particular was disturbed about her hair loss. Hats, scarves and wigs, just couldn't resolve how she felt about losing her hair. To make matters worse, someone challenged her when entering a female only area, as from behind they thought she was a man! Just imagine that scenario happening to you.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">Personally I have always been a confident guy, and when I lost my hair to chemo, I started telling jokes about it. But it can have the opposite affect on people too. I also realised that other changes were part of my regime, and I accepted them, not willingly though! However the world can be a very unforgiving place, if you are sensitive to the enforced changes that your body goes through. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-G4s0GgVSMBo/UtptN901igI/AAAAAAAAAgo/M2I0JatIDQc/s1600/The+stigma+of+a+changing+appearance.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-G4s0GgVSMBo/UtptN901igI/AAAAAAAAAgo/M2I0JatIDQc/s1600/The+stigma+of+a+changing+appearance.jpg" height="248" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br />
</b></span> <b style="font-family: Arial, Helvetica, sans-serif;"><br />
</b> <b style="font-family: Arial, Helvetica, sans-serif;">But, like most things in life, it is not all about you! It is important also to consider how other people might feel when they see you.</b><span style="font-family: Arial, Helvetica, sans-serif;"> Will you feel comfortable if you know they feel awkward looking at your scars etc? My personal example of this was a great friend of mine who had a very serious operation to remove a tumour from his head. After surgery he had a large scar and his head was shaved. I told him that it was very impressive, and I would be proud to show it off! His opinion was that he didn't want other people to feel uncomfortable, so he always wore a hat. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">The importance of your appearance during treatment can not be underestimated, as our bodies may undergo some incredible changes. In many instances this affects our psychological well being, which of course is linked to our physical issues.Things have improved, even in my few years, of experience, and we are now understanding the 'holistic' approach to treatment. But there are two factors that are difficult to control.</span><b style="font-family: Arial, Helvetica, sans-serif;"> Firstly, how we see ourselves, and secondly, how others see us. Generally those views are very different!</b><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">It seems that these days, particularly in the media, appearance is very important. Actors etc are having age defying treatments, and we seem to judge people based on quite unreal standards. If I am honest, I think I lost a lot of confidence when my appearance changed, even though I tried not to show it.I know that this issue can appear much worse for women. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;"> What is your opinion? How do you feel when you see someone who is going through some tough treatment? Do you feel awkward? Do they? How do you deal with those issues?</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br />
</b></span><b><span style="font-family: Arial, Helvetica, sans-serif;">This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my </span><span style="font-family: Arial, Helvetica, sans-serif;">work I would be very grateful, if you could click the attached link and vote for it. We are in the last week of voting now, and every vote counts! Tu :) </span></b><br />
<span style="font-family: Arial;"></span><br />
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="margin-left: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can also follow our community on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">FACEBOOK</span></a> </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br />
</span></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com2tag:blogger.com,1999:blog-8749436707205297492.post-66146173182643458162014-01-11T14:22:00.000+00:002014-01-11T14:22:29.249+00:00A life after surgery (Breast Cancer) <span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">We are certainly well and truly back into the work routine, after a couple of weeks off! Communication is starting to get back to its normal level, and as usual, the 'cancer world' is moving quickly. I had planned a quiet start to the year, but early treatment, and a few interesting emails,have woken me quickly from my slumbers. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">However, the most important thing this week, was a communication I had with someone regarding issues of appearance, during cancer treatment. A subject that I feel very passionately about, as I am aware of the importance of it, psychologically, in the treatment pathway. It is a subject I will cover in greater depth in my next blog.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">The below poem was written by a wonderful friend of mine. Here she talks candidly about her feelings of life after surgery. I would normally write more but I was so moved by this piece of work, it will talk for itself!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/--pTzh2ZuENM/UtATn6ygteI/AAAAAAAAAgU/GCIP4AMMQ_k/s1600/Life+after+surgery+(Breast+cancer+).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/--pTzh2ZuENM/UtATn6ygteI/AAAAAAAAAgU/GCIP4AMMQ_k/s1600/Life+after+surgery+(Breast+cancer+).jpg" height="298" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><b style="font-family: Arial, Helvetica, sans-serif;">"Cancer's not a journey, it's a slog,</b><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b> The media says fight to be "top dog";<br />
I’m being me, my mutilation's fine,<br />
I just can't be a health freak all the time!!!<br />
Whilst I look slightly changed, I'll jolly on,<br />
So why are you embarrassed -that's just wrong?<br />
Your fearing re occurrence cramps my style,<br />
Could fashion be one boob, once in a while?<br />
The sorrow gets me down because you see,<br />
I'm actually rather proud of being me.</b><br />
<br />
<b> I've realized my body's an illusion,<br />
You'll grow old too, and cells are a confusion...<br />
There's definitely beauty still within,<br />
But wanting it outside too, that’s my sin!<br />
I'm not the same, but can I still be normal?<br />
I want some frills, not function or formal,<br />
I’ve conquered getting out, I would like swimming,<br />
But plunging necklines limit somewhat gym’ing!<br />
<br />
I've lots of skills I'll add to my CV,<br />
Unusual, I'm sure you would agree?<br />
I'm capable of waiting, sometimes hours,<br />
And when you think it's pouring, I see showers…<br />
If bald I’ll cheerfully acquire a hat,<br />
There’s nothing I can’t face if I do that?<br />
No confidence, no memory, mind a fuzz,<br />
Yet just a lack of nausea is a buzz!<br />
<br />
One day they'll say the chemo was all crazy,<br />
It hurts your heart and makes your thinking hazy!<br />
The scars from radio', the skin they burned,<br />
The chunks of me where feeling's not returned...<br />
I’m hoping history will hold us a place,<br />
We've taken what they threw for human case.<br />
I think our future’s in our genes you know,<br />
And maybe soon the surgery will go.<br />
I like to think that we’ll have paved the way,<br />
For better treatment, for a future day,<br />
But meantime I’d like underwear with style,<br />
The post op’ lingerie is really vile!<br />
<br />
Don't get me wrong, I’m fine, I know you care,<br />
I know the bad times hurt and you were there;<br />
And seeing as I managed to survive,<br />
Can I be honest whilst I’m still alive?<br />
Let cancer open up, not shut the door,</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b> I want to say I’m better than before..."</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br />
</b></span> <span style="font-family: Arial, Helvetica, sans-serif;">I feel very privileged to be given the above piece to share with you! It is one person's feelings, and we will all have our own.Please feel free to share yours below. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span><b><span style="font-family: Arial, Helvetica, sans-serif;">This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my </span><span style="font-family: Arial, Helvetica, sans-serif;">work I would be very grateful, if you could click the attached link and vote for it. </span></b><br />
<span style="font-family: Arial;"></span><br />
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="margin-left: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can also follow our community on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">FACEBOOK</span></a> </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;"><br /></span></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com5tag:blogger.com,1999:blog-8749436707205297492.post-45101656375025755312014-01-05T13:07:00.002+00:002014-01-05T23:05:14.401+00:00A new year must always bring hope!<span style="font-family: Arial, Helvetica, sans-serif;">Well it has finally arrived, 2014. We seem to have been thinking about it for a long time,in a similar way to talking about Christmas from September onwards! Traditionally we give these events a massive build up, and I personally wonder, if once the days have arrived, we are quite glad, to get back to our normal lives, as we are fed up with hearing about them. This year in the UK, almost for the entire break, the weather has been atrocious, with constant wind and rain, bringing chaos to many people. This is still continuing into 2014. I also understand that the weather is poor in many parts of America.</span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Unfortunately, I was not well enough to go out on New Year's Eve, as I traditionally would have done. We have celebrated in many different ways over the years, from small gatherings to massive parties, however I don't know whether it is my health or my age, or maybe a combination of both, but I now prefer a quiet one at home. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">For most of us, I guess the New Year brings a logical place on our life's time line to review our past year, and start planning the next one. Since my illness, I have found planning very difficult, but I do think about the direction I want my life to take, even if I can't control the speed it goes at!</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">I have done a bit of 'spring cleaning,' removing certain things that I was involved with where I was gaining no satisfaction, to free up time for new projects.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-x_kf8rYx9jw/UsgHpkKf0oI/AAAAAAAAAf0/lnuETfJYtPM/s1600/A+new+year+must+always+bring+hope.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-x_kf8rYx9jw/UsgHpkKf0oI/AAAAAAAAAf0/lnuETfJYtPM/s400/A+new+year+must+always+bring+hope.jpg" height="266" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Most people I have spoken to in recent weeks, seem to be very keen to see the back of 2013, and accelerate into 2014<b>. "That was a bad year for me, so I am pleased to see the New one."</b> It feels like they believe a change in date will bring an immediate upturn in their fortunes. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">This made me think about how last year was for me.To be honest, it was pretty average by my standards. My health was up and down and unpredictable. I had some really good times, with some of the projects I am involved in, but was also pleased to see the back of others. Friends died, and babies were born, we had weddings and parties to attend. To sum it up, there were highs and lows, but since my illness, pretty much an average year. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Which made me wonder, how other peoples lives compare to that? If you had to summarise, your year, would you say it was average? As I watched people going wild around the world, I couldn't imagine they were thinking that they were going to have an average year.They had <b>hope,</b> that next year would indeed be so much better than this one.Actually, I always have that too. There is a lot of potentially exciting stuff lined up for me in the New Year, but I talk and think with caution now. Maybe that is experience? </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Hope is an emotion I have always had, even when I was given my original prognosis.It is actually what keeps me going. It ensures that I think positively, because I do believe that amongst the bad stuff in our lives, there will be some really good things. Sure, if I want to, I can recall vividly all my health problems, but I try to keep them to the back of my mind as best I can. My issues will never actually go away it seems, <b>but I have to believe they will.</b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-edTB7oJi298/UsgOKRrcTdI/AAAAAAAAAgE/dWKMk_pPYrw/s1600/A+new+year+must+always+bring+hope1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-edTB7oJi298/UsgOKRrcTdI/AAAAAAAAAgE/dWKMk_pPYrw/s1600/A+new+year+must+always+bring+hope1.jpg" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Without hope, we really would have nothing. The small team has to believe they can beat the big one. In our personal lives we must feel that we can progress, and that even the very pinnacle of our careers is achievable, even if we may not want to get there. For me President Obama is the perfect example of what can happen when you have hope.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">So, are we all riding into the 2014 on a new wave of enthusiasm, after celebrating the exit of 2013? I imagine not! Some of us are going straight back to our routine treatment, as if nothing has happened. A couple of my friends are awaiting news on test results done in the holidays.I just don't know what is going through their minds right now. People up and down the country, are trying to keep their businesses and properties safe from the terrible weather. But we know that eventually things will get better, we have hope and resilience.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">My simple thought, which I say every New Year's Eve is<b> "I just hope next year is better than this one." </b>Are you hoping for something special from 2014? What would you like it to bring? Maybe you love all the celebrating and have a different view to mine. I would love to hear from you! </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div>
<b><span style="font-family: Arial, Helvetica, sans-serif;">This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my </span><span style="font-family: Arial, Helvetica, sans-serif;">work I would be very grateful, if you could click the attached link and vote for it. </span></b></div>
<span style="font-family: Arial;"></span><br />
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="margin-left: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can also follow our community on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">FACEBOOK</span></a> </span></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-73086322465905216852013-12-29T13:18:00.001+00:002013-12-29T13:18:58.355+00:00A new perspective <span style="font-family: Arial, Helvetica, sans-serif;">I always find that the approach of New Year is a an ideal time to take stock of things.Our regular commitments subside and there is a little thinking time.Personally, I am never happy for my work to 'stand still,' and am always looking to improve things and embrace innovation, particularly in social-media.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">A few months ago I was at a conference, where I met a lady who listens to a presentation and creates a story from what is being said. I found this absolutely riveting, and the picture at the end captured the presentation perfectly! It actually made a boring talk very interesting! I felt that this would add a lot to my blog, so Anna very kindly took one of my most popular pieces and did one for me! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">So some of you may recognise a part of this piece, but I hope you are as impressed as I was, at the fantastic picture that sums up the post brilliantly.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial;">When I was diagnosed, on that terrible day back in 2007, I was very determined not to let cancer dictate my life, and to be able to still choose what I do with it. I suppose at that time, I was getting a little ahead of myself, as there was no guarantee that I was going to live for very long at all. However, a few years on, and with treatments improving all the time, I am beginning to find myself with a reasonable quality of life.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">It is ironic, that I have chosen to fill up my life with cancer content now. I draw comfort from the fact that it is all work that I can now choose, and involves meeting with lots of wonderful people, either patients or professionals. As I have mentioned frequently, people are my passion, and I am finding that my business background is helping incredibly with the things I do now.</span><span style="font-family: Arial;"></span><br />
<span style="font-family: Arial; text-align: center;"><br />
</span> <span style="font-family: Arial; text-align: center;">A meeting with someone I had never previously met has prompted this post. They had been observing my work in social media for some time, and pointed out that I always took the trouble to thank people. My reason for this is that I know how busy everyone is, and if they take time to do something for me, I should show my appreciation. This person had come a long distance to meet me, so I thanked them too! It was then that I realised that I now value people, in terms of time, not money.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-4WwNlytxcZA/Ur7RDDCk9UI/AAAAAAAAAfk/jYs4O-OkHO8/s1600/A+new+perspective+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="355" src="http://3.bp.blogspot.com/-4WwNlytxcZA/Ur7RDDCk9UI/AAAAAAAAAfk/jYs4O-OkHO8/s640/A+new+perspective+1.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
(<span style="font-family: Arial, Helvetica, sans-serif;">If you would like to know more about this work you can contact Anna <a href="http://www.newpossibilities.co.uk/">HERE</a>) </span></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<strong style="font-family: Arial;">We all have a value to others, although sometimes we can't see that.</strong><span style="font-family: Arial;"> </span><strong style="font-family: Arial;">We feel that if we do things for no financial reward, that we have no personal worth. Actually, the truth is very different to that! </strong></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Arial;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Arial;">In my business life, I got used to everything having a cost, therefore it was easy to place a value on something. The same in our personal lives, we tend to judge people by what they earn, as it is an easy comparison to use. But for me, the most valuable thing I have is time. My time is borrowed so I really do appreciate it's value!</span></div>
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Given the fact that everyone is precious with their time, I can now ascertain my value in peoples lives, by how much time they give me. The same applies in reverse, by how much time I afford others. On this basis things start to look differently. I dare you to look at your social life in the same way!</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I now realise, that one of the reason's I struggled psychologically with the fact that I was unable to return to my old life, was the value that I placed on myself. I was earning very well, and was always busy, I felt I was worth something. But very quickly, as I got sicker and sicker, and further away from work, I began to feel worthless. Mostly because I was no longer able to earn money. I can certainly empathise with people who lose their job for any reason. It has taken me a long time to find my true value, which is not in financial terms!</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Arial;">As I have slowly come to terms with my current life, my value is becoming more obvious. My personal and business experience is now in demand, and people are arranging their schedules around my availability. I know the efforts I have to make, to talk with people, either face to face,or on the phone. My treatment etc takes a lot of time and physical effort, also, as my family is increasing, it becomes more difficult to fit things in but I will if I can, and I want to.</span></div>
<span style="font-family: Arial;"></span><br />
<br />
<span style="font-family: Arial;">My personal cancer experience, has taught me the value of my own time. It has also made me appreciate, the value of other people's too. We all choose how we use it, so I am very grateful when people decide to give me some of theirs! Whether it is by taking time to read this blog, share it with friends, or follow me on Twitter, thank you, because there is not much higher compliment you can pay someone than sparing time for them.</span><br />
<span style="font-family: Arial;"><br />
</span> <b><span style="font-family: Arial, Helvetica, sans-serif;">This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my </span><span style="font-family: Arial, Helvetica, sans-serif;">work I would be very grateful, if you could click the attached link and vote for it. </span></b><br />
<span style="font-family: Arial;"></span><br />
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="margin-left: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can also follow our community on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">FACEBOOK</span></a> </span></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-80586790433267681202013-12-22T13:29:00.000+00:002013-12-28T13:19:25.729+00:00The best Christmas present ever! <span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">Well, it is nearly upon us again. I really don't know where the time goes. Christmas, the season of good will to all men! Plenty of good stuff happening. Presents, parties, eating and drinking, and generally having fun. Not forgetting of course that it is also a religious holiday. But one thing that is for certain is that cancer does not take </span><span style="font-family: Arial, Helvetica, sans-serif;">any time off. Celebration time or not, it continues on it's destructive path.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">As I have mentioned briefly, the festive season, is a particularly difficult time for most people affected by cancer.Maybe they have lost a loved one, just received some bad news, or possibly they are going through treatment. Quite difficult to celebrate, when things like that are </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">happening in your life. </span><br />
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></span> <span style="font-family: Arial, Helvetica, sans-serif;">I will be experiencing at first hand, the pressure that pa</span><span style="font-family: Arial, Helvetica, sans-serif;">tients can feel over the festive season. The difficulty of doctors and staff being away, ensuring that you have enough medication to see you through the period. Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">However, this time of the year is a particularly poignant time for me.</span><br />
<strong><span style="font-family: Arial, Helvetica, sans-serif;">Six years ago, I was in an isolation unit, undergoing a stem- cell transplant.</span></strong><br />
<strong><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></strong> <br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-_FNDOYl3nFE/UrBId7rL8MI/AAAAAAAAAec/r67rdspjEqM/s1600/The+best+Christmas+present+ever.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="http://3.bp.blogspot.com/-_FNDOYl3nFE/UrBId7rL8MI/AAAAAAAAAec/r67rdspjEqM/s320/The+best+Christmas+present+ever.jpg" width="320" /></a></div>
<strong><span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></strong> <span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice. My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem- cells from my anonymous donor was sent across London on a motorbike. All organised by the </span><a href="http://www.anthonynolan.org/" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">Anthony Nolan Charity</a><span style="font-family: Arial, Helvetica, sans-serif;">.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">The gift of life for Christmas, how meaningful is that? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece. Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant. Yet here I am, 6 years later writing this.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. My quick reply, was her, in a tiny Santa outfit! ( Sorry ladies!) She played along and came in on Christmas day with her outfit on!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Secondly, at just past midnight on Christmas Eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 57, my system is only 6.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is always a period of reflection.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-_a929qo6UXk/UrBIw-HrLTI/AAAAAAAAAek/Xfl8bvVHFVI/s1600/The+best+Christmas+present+ever+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="224" src="http://2.bp.blogspot.com/-_a929qo6UXk/UrBIw-HrLTI/AAAAAAAAAek/Xfl8bvVHFVI/s400/The+best+Christmas+present+ever+1.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control. My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 6 Christmas’s after being diagnosed with a stage 4 incurable Lymphoma.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives? Is it just an opportunity to escape from some of our everyday issues? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">Let them enjoy themselves! In recent years, there have been more serious moments, and less, lighter ones. My baggage is staying outside this Christmas,and in the New Year I will collect it again. I can't forget who owns it, and I don’t think anyone else will want it, so I know it will be still there. But a few days with family and friends will make it feel lighter, when we are reacquainted.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Whilst we are all celebrating the best way we can, the good work continues. Some of my medical team will be working over the holiday, and will be there if they are needed.I would like to thank them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.</span><br />
<br />
<b><span style="font-family: Arial, Helvetica, sans-serif;">This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my </span><span style="font-family: Arial, Helvetica, sans-serif;">work I would be very grateful, if you could click the attached link and vote for it. </span></b><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="margin-left: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><span style="font-family: Arial, Helvetica, sans-serif;">You can also follow our community on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">FACEBOOK</span></a> </span></span><br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com0tag:blogger.com,1999:blog-8749436707205297492.post-50474432861792127082013-12-15T10:18:00.000+00:002013-12-16T11:02:04.510+00:00Coping with life during treatment (Dee's story) <span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">This week has been mentally tough. I have had my routine treatment, although I was feeling pretty rough, because of my chest infection. However the positive side of that was I got examined again. A larger dose of antibiotics was prescribed, and things are improving. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
As I had been feeling lethargic, it meant that I spent more time than usual on my computer. Looking into more detail of some of the things that were happening in the cancer world, and in particular, some of my friends who are currently going through treatment.Coming into the Christmas period whilst undergoing treatment is very tough. It is a particularly poignant time of year anyway, but when people are seeming so happy, it can be very difficult to feel the same way!<br />
<br />
My own stem-cell transplant took place over the Christmas period, which is a time I can never forget, as it has totally changed my life. As I have said so many times, all cancer experiences are unique, but we can all learn something from each others. Every so often I get very moving comments left on the blog, in response to a particular post. Dee wrote the below comments, on my post about 'guilt.' I felt that I needed to share them with my readers. (Tu, Dee!) </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-JQc-QpNlsw4/UqxaGWzndqI/AAAAAAAAAeE/m_Ac3P3XNEo/s1600/Coping+with+life+during+treatment.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="http://4.bp.blogspot.com/-JQc-QpNlsw4/UqxaGWzndqI/AAAAAAAAAeE/m_Ac3P3XNEo/s400/Coping+with+life+during+treatment.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <br />
<b style="font-family: Arial, Helvetica, sans-serif;"><i>"This has been a really bad week for me, in which loss of independence, frustration and guilt stand out like beacons. My form of non-Hodgkin lymphoma will always come back, and remission for me will only ever be in terms of periods between need for treatment. There goes the first guilt trip: "only ever". I'm alive, whilst some around me are dying. Some of those I nodded to only yesterday, are no longer with us. Yet I have the audacity to complain about 'my lot'. Well, yes, I do! I mourn for my old life, and I really mourn the loss of my independence.</i></b><br />
<br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>I have just completed my sixth and final course of treatment: each one one day in hospital on an infusion, followed by 5 days of oral chemotherapy at home. Courses one through four have led to increasingly worsening side-effects. Fatigue, and utterly debilitating being the worst. The eagerly awaited holiday in the sun with my equally hard working partner, cancelled! Some of the gigs we have been dying to dance at, cancelled! Invitations to social events with family and close friends, cancelled! Because of me, or, as I keep being reminded, because of my illness. I am a blameless observer in my life, yet that is not how I see it. This is personal, and the life I had, the one I have worked hard for for 40 plus years to enjoy, has gone, and with it is going the life and dreams of some of those around me - the ones I care about, the ones I love.</i></b></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><i><br />
</i></b></span> <b style="font-family: Arial, Helvetica, sans-serif;"><i>Courses five and six have been horrible. In each I have caught some random bug during my chemo week, just as my whole immune system is being wiped out, and utter debilitation had swiftly followed. Needing people to look after me, unable to do house work, regularly unable to do my shopping, sometimes not even being able to get out of bed, get washed, get dressed, and worst, those really dreadful times, when I can't even walk unaided. This once formidable matriarch of long standing, this unflinching support network for close family and friends, this ruler of all I see, has become this simpering wreck of a woman, who's frail limbs, gaunt face and saggy bottom of a woman thirty years older than I, sits here instead, only now once again able to clear the drool from my colourless lips for myself.</i></b><br />
<b style="font-family: Arial, Helvetica, sans-serif;"><i><br />
</i></b> <br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-4KKvYgtuuYo/Uqxaiax0-6I/AAAAAAAAAeM/S4V3t961PZg/s1600/Coping+with+life+during+treatment+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-4KKvYgtuuYo/Uqxaiax0-6I/AAAAAAAAAeM/S4V3t961PZg/s320/Coping+with+life+during+treatment+1.jpg" width="320" /></a></div>
<b style="font-family: Arial, Helvetica, sans-serif;"><i><br />
</i></b> <span style="font-family: Arial, Helvetica, sans-serif;"><b><i><br />
</i></b></span> <b style="font-family: Arial, Helvetica, sans-serif;"><i>This is my second hospital admission in four weeks, and I write now from my hospital bed, unable to sleep any more. My fever has broken, this infection is under control, and I will be going home in 6 hours time. My treatment complete, my cancer gone! But it isn't, it's only sleeping. As I lay here planning for the next phase of living with cancer, I am all too aware that 72 hours ago, I was stood in the corridor crying like a baby. I was unsure if it was safe to let go of the wall, I was struggling with visual disturbances, and I was so do weary and weak that I couldn't even work out what I was trying to do, although I did know it had something to do with the Doctor who still hadn't come after 3 hours, despite his assurance that he would 'be there in 5".</i></b><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b><i><br />
</i></b></span> <span style="font-family: Arial, Helvetica, sans-serif;"><b><i>The nurses rushing past, no one to talk to, no one to help me, no one to hold my hand and tell me I was safe. Not on this frantically paced acute general oncology Ward where End of Life was going on around me. "The Doctors are busy with patients who are really sick". I am a patient, I am really sick! I voiced my concerns, but no one stopped. I had become invisible. The patient in such urgent need, yet no one could see me, I had become invisible, and I felt like a non-person, unwanted, afraid and alone. I was still alive, and once lucid again, I felt guilty that I had bothered the nurses than night, that I had demanded that someone met my needs, when some around me had lost their fight. Guilty as charged."</i></b></span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">I was astounded at the emotions that were so powerfully described in these comments. A lot of what happened to Dee in this instance, I have experienced personally. The feeling of helplessness washes over you. I know there are so many patients going through such tricky times, both physically and emotionally. Christmas is a difficult time for us.Unfortunately our issues continue, so if someone you know is going through some tough stuff, hopefully this piece might help you understand if they are not always full of festive joy.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span> <span style="font-family: Arial, Helvetica, sans-serif;">Chris's Cancer Community is now on<span style="color: blue;"> <a href="https://www.facebook.com/chriscancersupport"><span style="color: blue;">Facebook</span></a></span>. Feel free to join us there too! </span></div>
<div>
<span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <br />
<a href="http://www.blogawardsuk.co.uk/blog-entries/chriss-cancer-community/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Vote for Chris’s Cancer Community in the UK Blog Awards" src="http://www.blogawardsuk.co.uk/wp-content/themes/ukblog_1.3/styles/images/embed-logo.png" /></a><span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span> <span style="background-color: white; color: #222222; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-align: justify;"><span style="font-size: 14px; line-height: 19px;"><i><b><br />
</b></i></span></span></div>
</div>
Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com6tag:blogger.com,1999:blog-8749436707205297492.post-73451029073500517152013-12-08T17:09:00.000+00:002013-12-08T17:19:58.492+00:00The joy of sharing! <span style="font-family: Arial, Helvetica, sans-serif;">The last 2 weeks have been quite difficult for me, as we are now reaching the festive period, but unfortunately my chest infection means that I am very limited to what I can do.<b> In my life before cancer I was a party animal. </b>When I wasn't working I was socialising, both privately and in a business capacity. This aspect of my personality has not changed at all, as I really am a people lover. However, gone are the all night parties and late night drinking. No more dancing till dawn.A lot of my physically energy is lost to constant treatment, I am unable to taste my food, or drink alcohol! I am absolutely exhausted by about 11pm.This made me think seriously about what joys in life I had left! </span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">But then I had a 'light bulb' moment!<b> My life is not only about me. </b>Yes it is my life, but I am connected to so many others and I am in theirs too. I am part of my friends history, we have done so many things together over the years.Birthdays, Christmas's, marriages, births and even deaths. We have shared experiences together. I have just returned from a Christmas party, which we have attended for many years. There are more than 100 of us celebrating together. Unfortunately I have missed a few of these in recent years due to bad health. But even though I was unwell, I knew that I had to go this year.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-q4g10LE0SQo/UqSmuOtUxrI/AAAAAAAAAds/yVEGw2S0If8/s1600/The+joy+of+sharing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="299" src="http://3.bp.blogspot.com/-q4g10LE0SQo/UqSmuOtUxrI/AAAAAAAAAds/yVEGw2S0If8/s400/The+joy+of+sharing.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">So many people were pleased to see me and there were many smiling faces. Some very moving private conversations too! My conclusion is that my joy now comes from <b>sharing. </b>All the highlights in my life have been shared with others. Anything I have achieved, has only really meant something, when shared, with people I care about. Nothing would mean anything without sharing it. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Thankfully, I am around in the social media era. This is a tool that is perfect for sharing. Facts, figures, crazy quotes, pictures, information and support, can all be found, and shared easily. I know that if I see an interesting article or some helpful information, I am only too happy to share it.I feel some form of satisfaction, that I have been able to share the work of the writer, and also possibly by helping someone find the information they might need. I guess I am like an internet signpost for people affected by cancer. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">However, sharing doesn't come easy to many. <b>A lot of people prefer to be very private with their thoughts and deeds.</b> That is fine too, but I can't help feeling that they would find life much more pleasurable by talking to others, even about their problems. When I started this blog, my intention was to share my journey publicly and openly, to encourage other people to think about their own life. This is happening, and I am so pleased to hear from people who find this blog helpful. What is also happening is that by writing, a lot of negative emotion is coming out, and being replaced by positivity, as I see the audience growing rapidly. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-hcWUgZTXtP0/UqSm-wXOb8I/AAAAAAAAAd0/CJHVCel4fcc/s1600/The+joy+of+sharing1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://2.bp.blogspot.com/-hcWUgZTXtP0/UqSm-wXOb8I/AAAAAAAAAd0/CJHVCel4fcc/s400/The+joy+of+sharing1.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b>The real value of my life, is sharing what I have left, with others. </b>My time is now about making memories. I am very lucky, and have many wonderful people in my life.Most of them haven't just arrived, but have been their for years. Even my 'cancer club,' friends have been with me since I started this epic journey.My doctors and medical team, and all the people I work with in the charity sector, are now very much a part of my world.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">In my business world, sharing just wasn't really done, in case your competition stole your ideas. But since I have entered the world of cancer, I have given, and received, so much joy. If by sharing, I can improve someones life, I am a happy man. I am told I have a gift for talking to people. Whatever talent you may have, if you don't use it to the benefit of others, it is wasted. Why do we have experience, if not to help others? Hopefully other people can learn from what worked, and what didn't work, for you.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I have tried to take a personally negative experience, and make it a positive one for others. The part you all play in this, is also very important! It relies on you being the sharing type too! There is now a new<span style="color: red;"> <b> <a href="https://www.facebook.com/chriscancersupport"><span style="color: red;">'Chris's Cancer Community'</span></a></b> </span>Facebook site to aid sharing. It would be much appreciated if you could click the<b> LIKE button</b>, and<b> SHARE </b>:) Tu for playing your part!!!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Are you a sharer, or a more private person? Do you get similar benefits to me when u share? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com6tag:blogger.com,1999:blog-8749436707205297492.post-56254285276388661942013-12-01T15:29:00.000+00:002013-12-01T15:29:05.738+00:00Always grateful, but still feeling guilty!<span style="font-family: Arial, Helvetica, sans-serif;">Winter can be a difficult time, even for those in reasonable health, but for me, it is becoming my personal <b>nemesis</b>, and I look forward to it less each year! Here in<b> London</b>, the weather has been kind this year, and even though we are now into December, the temperatures are only just getting quite cold. It is no coincidence, that my health has been in reasonable shape, during the lovely summer we have enjoyed.However this week has woken me up with a large dose of reality! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">You would have thought that after 6 years of similar cycles, I might have learnt, but no! Far be it from me to disappoint. <b>I am like the baby who continually puts his fingers in the electric socket, to find that it hurts, every time</b>. As soon as I feel well for a few weeks, I think that my problems have all gone, never to return. Despite all the warnings, I continue like nothing has happened, until my body says no more. Which it has done this week.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-Me0lg4q2u_k/UptTvO75tNI/AAAAAAAAAdU/gtHrjOlJimU/s1600/Always+guilty+but+still+feeling+grateful.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="324" src="http://3.bp.blogspot.com/-Me0lg4q2u_k/UptTvO75tNI/AAAAAAAAAdU/gtHrjOlJimU/s400/Always+guilty+but+still+feeling+grateful.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">A combination of cold weather and bugs everywhere, took me down quickly.Which has left me with little energy or appetite, and even unable to partake in my usual Twitter conversations. But it did give me a lot of thinking time. My initial emotion, was<b> frustration</b>. That my life has yet again, been interrupted by my health issues. Stopping me doing the things I love, and progressing my work in cancer support, hopefully only temporarily, though.However, I then thought, that actually, I should not be complaining at all! I have life, where it wasn't expected. I should be<b> grateful</b>, I<b> </b>am and always will be, of course, but sometimes forget! But </span><b style="font-family: Arial, Helvetica, sans-serif;">guilt </b><span style="font-family: Arial, Helvetica, sans-serif;">is</span><b style="font-family: Arial, Helvetica, sans-serif;"> </b><span style="font-family: Arial, Helvetica, sans-serif;">the most difficult emotion for me to live with.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b>Independence</b>, is probably one of the most important things in our lives. But like a lot of people diagnosed with cancer, mine went,along with a lot of other things. I have become dependent on medication, the skill of my clinical team, but more importantly on my family and friends. Sure, everyone says it's a pleasure, of course, but looking after someone as obstinate as me, could not be described as that, I am sure! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Not only is it <b>my</b> life that is affected. Unfortunately, I have dragged other people into my world too. You see, this is the almost hidden affect of cancer on us. Not only does it affect the person who is diagnosed, it changes the lives of others too. In my own instance, My wife and I had decided to some travelling when we retired.Getting to hospital frequently, is now almost the limit of my travelling! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">All our hopes and dreams, have been put on hold. Our financial plans for our boys, have also had to be adjusted, to fit with my situation. I struggle to do any physical work around the house, and my boys have to do most 'man tasks.' Even driving long distances is difficult, as I find I lose concentration quickly. This week I have been unable to enjoy my wife's birthday celebrations, as I have been unwell. We are due to go away for the w/end with friends and am hoping I will be up to it by then.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-ybYtQIEcL1s/UptUMXrW4nI/AAAAAAAAAdg/LFnOs23Yav8/s1600/Always+grateful+but+still+feeling+guilty1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://1.bp.blogspot.com/-ybYtQIEcL1s/UptUMXrW4nI/AAAAAAAAAdg/LFnOs23Yav8/s400/Always+grateful+but+still+feeling+guilty1.jpg" width="400" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">It's very difficult to plan things as a couple, now. My wife is at the stage in her life, where she should be out travelling in the sun, and enjoying herself. Not picking up the pieces after me, when I'm continually unwell.Making sure I'm taking my medication at the right time, and ensuring I get to the hospital when I should. Whether we like it or not, I need carers. That doesn't thrill me with joy, I can tell you!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I wanted to put this out there today, as from my talks with a lot of other patients, there are many of us that feel this way. Some people discuss it with their partners and others don't.I guess we all live with a feeling of guilt about something, some even feel guilty for being alive, while others are not! But at times, it is a heavy load to carry, along with everything else. Everyone says I shouldn't feel that way, but you know how hard it can be to ask for something once. Just imagine that every day! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">For those of you affected by cancer, you may recognise some of the things I have written about today. I am also aware that I now have a very varied readership, and so if you have little knowledge of the impact of cancer in someone's life this may be surprising for you, but unfortunately it is real. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">What emotions do you go through daily? Are you affected by guilt like I am? Is there a way that you have found to deal with some of these issues. I do look forward to hearing from you. Please feel free to leave a comment below, or catch me on Twitter @christheeagle1 </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com13tag:blogger.com,1999:blog-8749436707205297492.post-46816098835944720502013-11-24T10:19:00.000+00:002013-11-24T10:19:47.865+00:00Do you get the support you require? <span style="font-family: Arial, Helvetica, sans-serif;">This week has involved a great variety of work, and I have had a lot of communication around one subject, <strong>cancer support</strong>. I have spent many hours on social media, and have attended several meetings, either in a clinical setting or a social environment, talking to people who are involved in providing it. I also include myself in that, as support provided via the social media platforms is proving to be so important, the way we are now living our lives.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">As my internet work increases, I find more and more people around the world, doing such wonderful things, all working under the umbrella of cancer support. It feels like an army! However, when I talk to patients, which I do frequently, either in my work, or when I am being treated myself, I can't help sensing that people are still not aware of what is available to them, or can't find what they are looking for, which I find very frustrating.</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-ou7xdHvM1To/UpDDpu_FRUI/AAAAAAAAAc8/Y6yLoE36Lws/s1600/Do+you+get+the+support+you+require.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="248" src="http://4.bp.blogspot.com/-ou7xdHvM1To/UpDDpu_FRUI/AAAAAAAAAc8/Y6yLoE36Lws/s400/Do+you+get+the+support+you+require.jpg" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Only yesterday, a friend casually remarked, how wherever he went, he bumped into a cancer charity advertisement. It was a flip comment, but I understood what he meant. It is very difficult to avoid coming into contact with something cancer related, usually a collecting box! But in many respects, that is a good thing isn't it? We are making people aware of cancer, and now people feel more comfortable talking about it than they did, years ago.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">So if there is so much more awareness of cancer and it's issues, how is it that people are still struggling to find the support they require?<strong> Is it because the type of support they require, just doesn't exist?</strong> I may be entirely wrong on this, so this is why I ask the question in this blog. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I have been to several presentations recently, where there have been many patients, in attendance. Most formats have been similar, with charities in the reception areas, showing information booklets etc,and selling Christmas cards. The people doing that were all enthusiastic, but it felt like a market place, where people were competing for customers. At no stage did I ever feel that the staff had a genuine understanding of what their audience was experiencing.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Given the fact that all the hard work done in the past has a got us to a stage where we almost have an information overload, it is not now what they seek. With information, the patient can make informed decisions, so we are definitely getting to a good place as far as that side of things is concerned. Also in the longer term I'm sure there are improved outcomes too, because of information.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The major difficulty, in providing cancer support, is that we all need different things at different times. From my own experience, and that of many of my fellow patients, our medical needs are mostly met, within our hospital. It's once outside that environment, where things change.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The more practical issues of life, have to be faced, and unfortunately, a handful of booklets, just doesn't really cut it. Sure, there has been a lot of research going into the information provided, but it doesn't end there. For many, that's where the real issues begin. Where do you turn? There is advice out there, but in many instances it is like looking for a needle in a haystack. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-2QoNiy4R0_8/UpDD9aYzn-I/AAAAAAAAAdE/J1R4ALSNDqk/s1600/Do+you+get+the+support+you+require+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="155" src="http://1.bp.blogspot.com/-2QoNiy4R0_8/UpDD9aYzn-I/AAAAAAAAAdE/J1R4ALSNDqk/s400/Do+you+get+the+support+you+require+1.jpg" width="400" /></a></div>
<br />
<br />
<span style="font-family: Arial;">My opinion is that we need to be much more proactive in the way we provide support. We need to treat patients as people, and not just as a number to be targeted with mail shots and marketing. There needs to be a support coordinator for people, once they leave the perceived 'safety' of the hospital. You can easily become institutionalised and may need help adjusting to every day life, and signposting to local support that might be helpful for you.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">From a society perspective, it is important that we do what we can to help people affected by any long term conditions, to be aided back to as useful a life as they can create. Giving something back, and feeling useful again. Hopefully, to be able to work, provide for their families and get a feeling of well being again. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Unfortunately in a clinical setting, I don't really see professionals talking about these issues. Our treatment is generally good, and we have come to rely on the system to help us, but on these issues it doesn't. We need to be much more open about this, and not be content to hand people branded books, and think that the job is done. Sure, time is an issue, but I really feel that much more personal contact is required, to improve things.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Maybe you disagree with my opinions and ideas. Hopefully you have found all the support that you required. If so, what worked well for you, and you would be happy to share? If not, what do you feel is missing ,and how could it be provided? Please feel free to leave a comment or tweet me @christheeagle1 </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com15tag:blogger.com,1999:blog-8749436707205297492.post-68132129916610674772013-11-17T15:11:00.002+00:002013-11-17T15:11:52.631+00:00Coming together in adversity<span style="font-family: Arial, Helvetica, sans-serif;">This week has been like a massive blur! My treatment took up Monday and Tuesday, and I spent Wednesday, catching up with my work and preparing for some presentations which I was doing on Thursday and Friday. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">It is now 2 years since I started this particular regime of treatment, but with a combination of drugs and blood treatment, my body is able to help me have a reasonable quality of life. If I think back to when this issue started, I was unable to dress myself, or even cut my own dinner properly, and now thankfully I can do both! However it seems like at least another year before I will know if I can come off the treatment safely. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">This uses up a large chunk of time and energy, but thankfully due to the advances in social media, I can keep in touch with people across the globe, to maintain my work, in raising awareness of the<strong> psychological and emotional issues of cancer</strong>. However, my preferred method of contact is <strong>in person</strong>, and this week I was able to do 2 presentations to very different audiences. I really enjoy sharing my experiences in large groups but the true effectiveness of what I do, is when speaking to people afterwards in a 'one to one' setting.</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-jiiu1r9EiM0/UojPzErnI5I/AAAAAAAAAck/3UknWa0JkCg/s1600/scale-750x750.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="http://2.bp.blogspot.com/-jiiu1r9EiM0/UojPzErnI5I/AAAAAAAAAck/3UknWa0JkCg/s400/scale-750x750.jpg" width="400" /></a></div>
<br />
<br />
<span style="font-family: Arial;">Many people are just not comfortable sharing their own thoughts in public, but are pleased to talk privately about their personal experiences. I felt extremely privileged on Friday, when I was talking in Durham at a large<strong> haematology conference</strong>. I managed to speak to so many people over lunch, and share views with them. Both professionals and patients were very keen to exchange ideas, and that is why I enjoy being able to meet people personally. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The previous day I was speaking in London to a group of <strong>policy makers</strong> for a large cancer charity. It was a fantastic opportunity for all of us to learn from each other. They were interested in my views about cancer support, and I was interested in how they worked. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">In addition to the presentations, the Twitter bandwagon was still rolling, and people were sharing some of my recent blogs, and sending me their comments. It was great to receive <strong>'real time' </strong>feedback from people who have just seen me speak too! Quite surreal at times. So on my long train journey back from Durham I had a lot of time for reflection on my week.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I have met so many different people this week, patients, professionals, and business people. All with a link to cancer, and with a passion to improve things. But things felt very different to when you normally first meet people. There was an immediate connection, no 'verbal jousting,' or trying to play 'one upmanship games.' A warm welcome was felt by all.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Every person, was doing what they could. There was no hierarchy either, everyone was communicating on the same level, be it policy maker or new patient. Of course we are all connected by cancer. This is the common theme. Some work in that field, and others of us have personal experience, but there was a feeling of togetherness. That same feeling is translated in social media. As most of you know, outside of this blog, my preferred medium for communication is Twitter. I have been lucky enough to be followed by a lot of new people recently, and with most of them, we are sharing quickly, our experiences and contacts.</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-NlYFbhekhmo/UojQZJZIerI/AAAAAAAAAcs/khOKuOfo6zw/s1600/Coming+together+in+adversity.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="223" src="http://2.bp.blogspot.com/-NlYFbhekhmo/UojQZJZIerI/AAAAAAAAAcs/khOKuOfo6zw/s400/Coming+together+in+adversity.jpg" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">In these days, it is easy to share, and by doing that, we can help improve things for others. This is the key to my work.<strong> What is the value of experience if not shared?</strong> Our lives are all touched by cancer, whether directly or indirectly. I was really moved a couple of weeks ago, when one of my football followers contacted me about my blog. He found it useful and shared the piece amongst his friends. This is just one example of people coming together in adversity.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">A very recent demonstration of this, is what is currently happening in the<strong> Philippines. </strong>People from around the world are joining together, with a common cause, in adversity. We have seen many examples of this, but I do get slightly frustrated, when I wonder why does it take something like this to happen, to get us working together in this way? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com2tag:blogger.com,1999:blog-8749436707205297492.post-86927725114187388442013-11-10T14:34:00.000+00:002013-11-10T21:15:44.563+00:00Do you know that feeling of isolation? <span style="font-family: Arial, Helvetica, sans-serif;">This week has been an incredibly busy week on social-media for me. Last weeks post found it's way to many lovely people out there who shared and shared, till I think at last count we had 31 re-tweets of one link alone! Although my work is cancer focused of course, I try to talk on subjects that will affect all of us at some stage.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Watching the news in recent weeks, I was shocked to see how physically isolated, a lot of our older generation has become. Nearly 1 in 5 older people are in contact with family, friends and neighbours less than once a week; and for 1in 10 it's less than once a month. Half of all older people in the UK, about 5 million, say the television is their main company. This seems like it may be a cultural issue, with many older people preferring their independence, and not wishing to feel like they are a burden on their family. However that feeling of isolation, can be a very destructive force, first mentally and then eventually physically.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I have chosen to talk about the feeling of isolation today as I feel that it is one of the major side effects of a cancer diagnosis, and one that unfortunately is very difficult to deal with. The first major hurdle is actually recognising the problem. Then an even bigger issue is acceptance. If you have never had those feelings it will be very difficult to understand, how someone can feel isolated, particularly when they are continually surrounded by family and friends, which many of us are.</span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-QkK39Hses0g/Un-W5nSZ5vI/AAAAAAAAAcM/5h05sUWxdSQ/s1600/Have+you+ever+felt+isolated.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-QkK39Hses0g/Un-W5nSZ5vI/AAAAAAAAAcM/5h05sUWxdSQ/s400/Have+you+ever+felt+isolated.jpg" width="400" /></a></div>
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">During my frequent meetings, with people affected by cancer, I am continually shocked, how I have to actually ask people if they feel isolated. It is something I have encountered, that affects almost everyone I talk to. However, many people feel awkward about mentioning it. I have also found it is a subject that is hardly ever discussed between partners. The main reason I have discovered for this, is the fear that the other person will not understand. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">This is yet another side effect, that is rarely talked about openly. Doctors don't ask, and patients don't mention it. Something else to make the situation more complicated! Every diagnosis of cancer is unique, and will affect everyone differently. That is why there is not one single answer to this. But in most cases, it is not about taking more drugs or seeing a counsellor, which tend to be the common alternatives, if you mention that you feel differently, either psychologically or emotionally.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">My feeling is that unfortunately, we are all seen as our disease, and not necessarily as a 'person.' When we see our clinicians, rarely are they able to see beyond what is wrong with us, into our life, and the part we play in society. A father, a husband, an entrepreneur etc. None of that rarely comes into the picture. This is where I feel we need a much more holistic approach to treatment.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">There are signs that at last these issues are being recognised, with the introduction of a Holistic Needs Assessment Tool, developed by Macmillan Cancer Support, but that is still at the 'pilot' stage. Also the very successful #notalone campaign, which is raising awareness of the isolation issue. But in my opinion, so much is still left unsaid to the patient.</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Arial;">I see a massive irony here too. Despite the fact that we are finding an increasing number of ways to communicate with each other, we are also struggling more, with the feeling of isolation. How crazy does that sound? This is not only true for people affected by cancer. I mentioned the example of older people earlier, but if you really think about it, there are times when we all struggle with those feelings. </span></div>
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-9BPPbD8kMpo/Un-XWz45arI/AAAAAAAAAcU/hO3fgx-IuuU/s1600/Have+you+ever+felt+isolated+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-9BPPbD8kMpo/Un-XWz45arI/AAAAAAAAAcU/hO3fgx-IuuU/s320/Have+you+ever+felt+isolated+1.jpg" width="238" /></a></div>
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Whilst at school, or at work, or in a social gathering, we have all had times where we have felt isolated. Not physically, but mentally. Simply put, if we feel that we are different to other people in any way, we can feel isolated. Most of us are independent, and prefer not to look for help, we maybe see that as a sign of weakness? I'm quite possibly one of the worst examples of that! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">For me, social-media has been one of the greatest tools to help with that feeling. Of course, I am the only one travelling my journey, but I am aided by others who have also travelled it, who are there for me when needed. There are no hidden agendas, and they ask for nothing in return. They just 'get it!' Unfortunately, many people who would also benefit, are as yet unable to sample the joys of the Internet, due to lack of knowledge, or affordable equipment.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">In summary, the feeling of isolation after a cancer diagnosis is fairly normal, and is one of the main reason's I started this blog. I can't pretend to know the answer, but my offer for improvement is to make patients aware of it early on, so they don't feel that they are the only people feeling like that, as many still are today! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
<br />
<br />
</span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com6tag:blogger.com,1999:blog-8749436707205297492.post-81091340700136996182013-11-02T12:30:00.001+00:002013-11-02T12:30:35.223+00:00Time is the real currency of my life! <span style="font-family: Arial, Helvetica, sans-serif;">I hope I'm not speaking too soon, but life has been very kind to me recently. I have found time, and stayed fit enough, to catch up with lots of people in the last few days. It seems that much as I decided that cancer was not going to dominate my life, it actually is, but in a different way to the one I had imagined! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">When I was diagnosed, on that terrible day back in 2007, I was very determined not to let cancer dictate my life, and to be able to still choose what I do with it. I suppose at that time, I was getting a little ahead of myself, as there was no guarantee that I was going to live for very long at all. However, a few years on, and with treatments improving all the time, I am beginning to find myself with a reasonable quality of life.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">It is ironic, that I have chosen to fill up my life with cancer content now. I draw comfort from the fact that it is all work that I can now choose, and involves meeting with lots of wonderful people, either patients or professionals. As I have mentioned frequently, people are my passion, and I am finding that my business background is helping incredibly with the things I do now. </span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-3VODARfUVsM/UnPk_8U2gEI/AAAAAAAAAb8/a8LIcWGEFfc/s1600/Time+is+the+real+currency+of+my+life+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="210" src="http://3.bp.blogspot.com/-3VODARfUVsM/UnPk_8U2gEI/AAAAAAAAAb8/a8LIcWGEFfc/s400/Time+is+the+real+currency+of+my+life+1.png" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">A meeting with someone I had never previously met has prompted this post. They had been observing my work in social media for some time, and pointed out that I always took the trouble to thank people. My reason for this is that I know how busy everyone is, and if they take time to do something for me, I should show my appreciation. This person had come a long distance to meet me, so I thanked them too! It was then that I realised that I now value people, in terms of time, not money.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"><strong>We all have a value to others, although sometimes we can't see that.</strong> <strong>We feel that if we do things for no financial reward, that we have no personal worth. Actually, the truth is very different to that! </strong>In my business life, I got used to everything having a cost, therefore it was easy to place a value on something. The same in our personal lives, we tend to judge people by what they earn, as it is an easy comparison to use. But for me, the most valuable thing I have is time. My time is borrowed so I really do appreciate it's value!</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Given the fact that everyone is precious with their time, I can now ascertain my value in peoples lives, by how much time they give me. The same applies in reverse, by how much time I afford others. On this basis things start to look differently. I dare you to look at your social life in the same way! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I now realise, that one of the reason's I struggled psychologically with the fact that I was unable to return to my old life, was the value that I placed on myself. I was earning very well, and was always busy, I felt I was worth something. But very quickly, as I got sicker and sicker, and further away from work, I began to feel worthless. Mostly because I was no longer able to earn money. I can certainly empathise with people who lose their job for any reason. It has taken me a long time to find my true value, which is not in financial terms!</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-reaQSbRWnRc/UnPkvTQ71bI/AAAAAAAAAb0/0J6p7yONiHY/s1600/Time+is+the+real+currency+of+my+life.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="297" src="http://1.bp.blogspot.com/-reaQSbRWnRc/UnPkvTQ71bI/AAAAAAAAAb0/0J6p7yONiHY/s320/Time+is+the+real+currency+of+my+life.jpg" width="320" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">As I have slowly come to terms with my current life, my value is becoming more obvious. My personal and business experience is now in demand, and people are arranging their schedules around my availability. I know the efforts I have to make, to talk with people, either face to face,or on the phone. My treatment etc takes a lot of time and physical effort, also, as my family is increasing, it becomes more difficult to fit things in but I will if I can, and I want to. </span><br />
<br />
<span style="font-family: Arial;">My personal cancer experience, has taught me the value of my own time. It has also made me appreciate, the value of other people's too. We all choose how we use it, so I am very grateful when people decide to give me some of theirs! Whether it is by taking time to read this blog, share it with friends, or follow me on Twitter, thank you, because there is not much higher compliment you can pay someone than sparing time for them. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">How do you value yourself? How do other people value you? </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com2tag:blogger.com,1999:blog-8749436707205297492.post-36895410455294452772013-10-27T13:57:00.001+00:002013-10-27T14:19:13.875+00:00The joy of youthful innovation in cancer support.<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial;">This week has been particularly busy, as instead of being stuck behind my computer, sending emails and writing, I was doing my preferred work, meeting people. My project work is evolving, and I am invited to see some of the new work going on in the cancer sector. I have also completed a magazine interview, where my opinions were sought on some very controversial subjects. It will be interesting to see that in print! ( My legal team are ready!) To add to that, I have received a very nice invitation to talk to some policy making professionals, so a very varied week all round. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I have mentioned several times in my blogs that I love working with younger people. However, their issues can be incredibly complex. Unfortunately, many will not have been able to develop some of the life skills required to deal with cancer and it's side issues. But what I do find from this group, are fresh, stimulating ideas. They think very differently to me, and don't have so many preconceived ideas. Being always open to looking at problems differently.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-_Zd5GsHlHy8/Um0goPvf_oI/AAAAAAAAAbk/R-FjnSGl_Zo/s1600/The+joy+of+youthful+innovation+in+cancer+support.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-_Zd5GsHlHy8/Um0goPvf_oI/AAAAAAAAAbk/R-FjnSGl_Zo/s400/The+joy+of+youthful+innovation+in+cancer+support.jpg" width="281" /></a></div>
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">This stimulates <strong>innovation</strong>, which is what we require, to keep improving things for people affected by cancer. I am heartened to be invited to talk with people who are now starting to look at new ways we may be able to deal with the <strong>psychological and emotional issues</strong> that all of us face. We are now in an era when social media will play an increasing role in this. We can no longer rely on the support groups and traditional methods of counselling etc. People are looking at new, more modern ways of gaining the support they require. Something more suited to the lives we lead today.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Social media has given people affected by cancer, a new, very powerful tool. Very quickly, they have learned how to use it effectively, and support networks are springing up across the world. Whilst a lot of us have found our way around by trial and error, many of our younger patients, have been using their skills and experience to develop methods of support, more appropriate to them. What this means is that we can build on this work, and target much more age appropriate support.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I have been very honoured to feature some wonderful guest blogs, from some incredibly inspiring young people. All of which get read week after week by new readers. The style in which they are written, shows a freshness and openness, and an enthusiasm to share their experiences to the benefit of others. The young lady who's work I feature today, is someone I connect with frequently, as we have a lot of common ground with our work. We both work with several organisations and use our contrasting skills to help others.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Becki McGuiness works tirelessly for others, despite her own cancer issues She was honoured, to participate in the opening ceremony of the Paralympics in London 2012. She is an incredible lady and has just produced a wonderful piece of work, showing how poetry and art can be effective in cancer support. Below is a brief summary of why Becki created this project, and also a little of her own personal involvement with cancer. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><em><strong>"I was diagnosed with a benign tumour in 2005 at 18 and osteosarcoma (bone cancer) in my sacrum at 21. I enjoyed doing art lessons whilst going through chemotherapy at University College Hospital London. By creating this book with Fixers I wanted to show others, the positive effect, art and poetry can have, to help you cope with what I call the Big C. The final push to physically get this project off the ground, was when my Dad was diagnosed with cancer in 2012</strong></em></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><em><strong></strong></em></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><em><strong>I hope this helps anyone affected by cancer, to feel that they are not alone. Everyone's experience of cancer is different. Do what feels right for you. You will have good and bad days, you're only human."</strong></em></span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I feel very honoured to have a blog link included in this piece of work! My thanks to you Becki, for all you do for everyone affected by cancer.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">If you would like to find out more about what Becki does, take a look at her brilliant<span style="color: blue;"> </span></span><a href="http://www.copingwiththebigc.co.uk/"><span style="color: blue; font-family: Arial, Helvetica, sans-serif;"><strong>blog </strong></span></a><span style="font-family: Arial, Helvetica, sans-serif;">or contact her on <strong>Twitter @LoveEire4eva</strong></span><br />
<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="462" src="//e.issuu.com/embed.html#0/5369141" width="650"></iframe><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com0tag:blogger.com,1999:blog-8749436707205297492.post-91289056249980273592013-10-19T17:14:00.001+01:002013-10-21T16:49:10.146+01:00" Unfortunately, science hasn't caught up with you yet! " <span style="font-family: Arial, Helvetica, sans-serif;">My personal cancer experience has continued apace for more than 6 years. For good or bad, we have managed to keep things going. I say we, because, there are very many people involved in that process, not least of all my medical team, who have kept me alive with their skill, and determination, and no small amount of treatment. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">A lot of positive things have happened, regarding blood cancer, since I started.My disease is a rare Lymphoma, (Mantle Cell.) It is aggressive, and generally considered incurable. Survival rates are low, so prognosis is mostly poor. I was given the most appropriate treatment at the time, followed by an unrelated stem cell transplant. If that wasn't successful, my options were limited. However, it seems that things are improving quickly, and it now appears there are new drugs available, which may do good things, if and when I relapse.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Over the years, I know that I have been extremely lucky with my treatment. In reality, I have had more luck, than one man deserves. Although I have nearly lost my life on more than one occasion, my clinicians have always been able to find a solution, to my condition, and I have been allowed the drugs, to keep me alive. Although, recently I was told, by one of my team, " we don't always have a magic bullet," but I always believed they did. Until yesterday! </span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-4PHCHi3Auos/UmKtFzmdjXI/AAAAAAAAAa8/OkYXB-M80Bg/s1600/Science+hasn't+kept+up+with+you.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://3.bp.blogspot.com/-4PHCHi3Auos/UmKtFzmdjXI/AAAAAAAAAa8/OkYXB-M80Bg/s320/Science+hasn't+kept+up+with+you.png" width="320" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Due to some severe treatment I had, several years ago, I lost my taste and smell. Earth shattering for me at the time, but like most things in life, you learn to live with it. Along with all the other things that have slowly been taken from me, I have struggled at times. However my team felt that maybe there was something that could be done, and referred me to a senior E.N.T specialist. That appointment was yesterday. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">It was interesting to see a new clinician, as he didn't know me or my case, only what he read from my notes. Firstly, he congratulated me on still being alive, to which I smiled. He then asked me what my problem was, and gave me a very thorough examination. After a sharp intake of breath he said, my taste and smell were gone forever. Yet more casualties of my treatment. He explained that in certain aspects of my treatment, science had been able to keep up with nature but in this instance it hadn't! "Sorry Mr Lewis, there is nothing we can do." That seemed very final, and bought my entire medical situation into perspective. Simply, I am lucky to be alive. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">If I take the positives from my story, I am lucky to be around at a time when medical advances seem to be happening in blood cancers, similar to my own. From a hopeless case back in 2007, things are looking more positive as the years pass. But what if that wasn't the case, and I was unfortunate to have a disease, where nothing much is changing in investment or outcomes? </span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-oK2MPv3fz8k/UmKtVbhsThI/AAAAAAAAAbE/TM9_DlRDoDY/s1600/Science+hasn't+caught+up+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="145" src="http://4.bp.blogspot.com/-oK2MPv3fz8k/UmKtVbhsThI/AAAAAAAAAbE/TM9_DlRDoDY/s400/Science+hasn't+caught+up+1.png" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">My campaigning, for improvement in cancer treatment/support cuts across all cancers and I was very interested to hear about the work that <a href="http://saatchibill.tumblr.com/"><span style="color: blue;">Lord Saatchi</span></a> is doing around innovation in cancer treatment. My opinion is, that this work is well overdue. In a lot of instances we have been using the same treatments whilst getting similar outcomes for years. It is exciting that this has now been brought to public attention, and the fact that it is being driven by a very high profile person is fantastic. </span><span style="font-family: Arial;">Naturally there is a resistance in certain areas, particularly the Government, but what this campaign has done, is brought to the table, some of the very real issues that cancer patients can face, and some of the hurdles to possible improvement in outcomes.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">There is so much work, still to be done, in the complex world of cancer. The further I get into it, the more issues I can see. But one thing that gets clearer for me daily, is that collaboration in our work, is the one thing that will give us strength. There are many people doing great things out there, but we definitely need a much more joined up approach if we are to progress things in the longer term.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The above are my views and opinions, and it would be great to hear yours. What do you think? Do you agree/disagree? </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com4tag:blogger.com,1999:blog-8749436707205297492.post-12597101411586437292013-10-12T16:32:00.000+01:002013-10-12T16:32:47.207+01:00"Wearing cancer like a badge?" <span style="font-family: Arial, Helvetica, sans-serif;">Well, this week I didn't have to look too far for the content of this piece. There have been many potential subjects, but some can wait. This one has provoked a lot of outrage in the cancer community, and I wanted to add some thoughts of my own.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I am mostly sceptical</span> <span style="font-family: Arial, Helvetica, sans-serif;">when reading/listening to media reports, as generally they are 'slanted,' and often taken out of context. When listening to celebrities talking, I am always seeking a hidden agenda. A new book/record/film to plug. Come out and say something controversial and get yourself back in the spotlight! So I was a little surprised to read some comments from Jennifer Saunders about her cancer experience, that I felt were quite thoughtless to her fellow patients. However at the bottom of the article there was of course a good plug for her new book!!</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">My question is, were those statements designed to gain publicity for the book, or were they more about her well known forthright personality? Were they said for effect or did she actually mean them? What I can say, is that they have got people talking about Jennifer Saunders again, so maybe they have achieved their goal? Below are the comments to which this piece refers.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Asked if she thought some people keep wearing cancer like a badge, she replied: </span><br />
<span style="font-family: Arial;"><em><strong>'For ever, and I'll give you why-because it is the job you don't have to work for. You get so much attention and if you're not used to that, I bet it can sway you a little. I'm used to it. My job gives me the attention I'd otherwise crave. They must be so p****d off when their hair grows back. And you think," Oh, come on, cancer is so common now." '</strong></em></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-u1zV-BfdItA/Ullo9_fKnTI/AAAAAAAAAak/t6sXU4bdX-g/s1600/Wearing+cancer+as+a+medal+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-u1zV-BfdItA/Ullo9_fKnTI/AAAAAAAAAak/t6sXU4bdX-g/s320/Wearing+cancer+as+a+medal+2.jpg" width="320" /></a></div>
<br />
<span style="font-family: Arial;"><br />
<span style="font-family: "Arial","sans-serif";"><span style="font-family: "Arial","sans-serif";">We now live in a celebrity influenced society. How you define a celebrity is a question for another day! It is always sad to hear of anyone's cancer diagnosis, but when a famous person comes into the media talking cancer, not only does it do great things regarding raising awareness,but there is always a marketing opportunity. I'm sure that there are queues of charities wanting that person to be an ambassador, or politicians looking to them to favour one policy or another. Also their own personal marketing position seems to improve.</span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";">Cancer is a great equaliser. It doesn't discriminate between rich and poor,famous or not. We are lucky that in this country, whoever we are, we will receive the best possible treatment available. However, where things differ greatly in the celebrity world, are the options when you are lucky enough to finish your treatment. We can't all disappear off to exotic places to help our recovery, or do an endless round of chat shows, write books or release new records, to keep milking the commercial cash cow.</span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";">A cancer diagnosis changes your life forever. If you are lucky enough, and treatment puts you into remission, you will have to do your best to pick up the pieces of your life. Surgery you may have had, could alter your entire way of life. Above, Jennifer refers to cancer, as a job you don't have to work for. <strong>Mmmm</strong>, for most of us, it is like a job, but one you don't get paid for! </span><span style="font-family: "Arial","sans-serif";">She is also right, you do get a lot of attention, but without it, there is a possibility you might die! I am shocked too, saying that people may feel fed up when their hair grows back. </span></span><br />
<br />
</span><div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial;"> </span></div>
<span style="font-family: Arial;">
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-jopV7jbG76k/UllpP9v_wOI/AAAAAAAAAas/yi0_iNW8H_g/s1600/Wearing+cancer+as+a+medal.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-jopV7jbG76k/UllpP9v_wOI/AAAAAAAAAas/yi0_iNW8H_g/s320/Wearing+cancer+as+a+medal.jpg" width="319" /></a></div>
<br />
<span style="font-family: "Arial","sans-serif";"><br />
<br />
<span style="font-family: "Arial","sans-serif";">When cancer enters your life, you will certainly lose, many things, but a lot of people can also find strength, when they didn't realise they had it. Some people manage to turn such a negative thing, into a massive positive, and their life takes a new direction. Others can be overwhelmed by the whole experience, and may crumble.In the real world, people lose their jobs, houses, and partners, and may struggle for the rest of their lives, because of cancer. They have to live whatever life they have left, around hospital appointments. </span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";">In summary, I was very disappointed to read those comments, from someone I have always respected, but if she was inferring that people 'use' their cancer to gain attention, then surely that is what she has done with this interview! I'm sure that it won't be the last time that she mentions it commercially either. Next time I see you on television I will be looking for that badge! </span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";">I have attached the full interview <a href="http://www.dailymail.co.uk/news/article-2445091/Jennifer-Saunders-account-battling-breast-cancer-honest-uplifting.html"><span style="color: blue;">here</span></a>. Generally very insightful</span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial","sans-serif";"></span></i></b><br />
<span style="font-family: "Arial","sans-serif";"></span><br />
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial","sans-serif";"></span></i></b><br />
<span style="font-family: "Arial","sans-serif";"></span><o:p></o:p><br />
<span style="font-family: Times New Roman;">
</span></span><br />
<span style="font-family: Times New Roman;">
</span><br /></span><span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com9tag:blogger.com,1999:blog-8749436707205297492.post-42848085917919042322013-10-05T14:02:00.001+01:002013-10-05T14:02:29.517+01:00Young people deserve better cancer support! <span style="font-family: Arial, Helvetica, sans-serif;">My favourite area of work is with young people, and there are two main reasons for this. The first is that I just love the enthusiasm and energy from this group, but secondly, I am genuinely shocked, at how little support is available, and I want to make some noise about this! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">By chance, I have spent the last week, involved with some young people. I have attended a presentation by <a href="http://www.shinecancersupport.co.uk/Pages/default.aspx"><span style="color: blue;">Shine Cancer Support</span></a> and was privileged to meet several, vociferous people. I also met many young people raising money for <a href="http://www.macmillan.org.uk/home.aspx?gclid=CIrj1sPU_7kCFVLJtAod6noAYw"><span style="color: blue;">Macmillan Cancer Support</span></a> #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Experience shows me that, services are ok, if you are very young, teenage, or 'middle age' but the group of 20s 30s,and 40s is largely forgotten. There are specialist units and charities that can help support you in your earlier years, but what happens when you move from being a teenager, to becoming a young adult? It seems that you start falling between the large cracks in cancer support. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I was 50, and very worldly wise when I was diagnosed, but I struggled to find the appropriate support I needed. So I am not at all shocked to hear that young people, who are just starting to find their place in the world, can't find what they need to help them, when facing a cancer diagnosis. My opinion is that in the past, this group, has not really had a voice, but with the now vast, use of social media in this age group, people are beginning to join up, and fight this inequality. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-7asPza6DHg8/UlALCRIK3cI/AAAAAAAAAaE/MR_hFE0mKsw/s1600/Young+people+deserve+better+cancer+support.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-7asPza6DHg8/UlALCRIK3cI/AAAAAAAAAaE/MR_hFE0mKsw/s400/Young+people+deserve+better+cancer+support.jpg" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Many of the issues that this group face, affect them so differently to others. Fertility, relationships, education, and living with uncertainty, are just some of those. These decisions, are life changing, and difficult to make if you are in perfect health. Imagine the pressures you may face when dealing with cancer too.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">During one of my many recent conversations, dating was being discussed by some young ladies. They were all talking about when they should tell any new partner about their cancer! At the start of the relationship, over a dinner, of just before hopping into bed? This was particularly poignant for anyone who has had surgery. We were all laughing, as we imagined some very strange scenarios. But the point was well made, and so important.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The ease with which these issues are discussed peer to peer is very refreshing, but the biggest problem I see is the difficulty in communication between this group and the health profession. Generally, it is like there are two different languages being spoken, and both groups struggle to understand each other at times. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Unfortunately, I cannot really think of the answer to this issue, even if there was an unlimited supply of money. But what I am really aware of, is the difference that communicating with someone, who has faced/is facing similar to you, can make. There are national charities that facilitate forums etc, but I am not convinced that this is what is needed. Unfortunately, although these are very safe areas, on the whole they don't truly represent what is happening in real life. There are many unofficial communities forming which are much more real, but still safe. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Small, local, and more welcoming support, seems to be what is required, but the way that marketing is done these days means that local organisations are constantly struggling for funding. What I have also seen is that, particularly with this group, the people running the support, need to have a greater connection to the people receiving it. I constantly see people in charge of large budgets that have no idea, of the issues that the people they are trying to help, are facing, they are just too disconnected! A common issue across most support agencies I feel.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Enough from me! I have attached a part of a blog from an amazing young lady. Sam has written a couple of guest posts for me, which have had tremendous impact. She writes in that very refreshing and blunt style, that I was referring to earlier. This piece is an example of the issues that these young people face. She refers to her experience with radiotherapy. </span><br />
<br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-family: "Trebuchet MS",sans-serif;"><em>"I can't look at this mask any more because I am now coping with my cancer more than I did when I was being treated. I now have the time to think about everything that happened. And the more I think about it the harder it has become. I have nightmares, panic attacks and anxiety pains when it comes to thinking about cancer, just last week I convinced myself I had bone cancer and this week I was convinced I had a brain tumour, I know I don't but thinking about these things gives me pain which makes it worse! And theres no not thinking about it. Cancer has taken over my life. I have become my cancer. Oh bollocks!</em></span></span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-r-zPLHjInq8/UkVc56uAaYI/AAAAAAAAAHw/qc8S-IvIF2M/s1600/941044_10151351146340518_1280667862_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-r-zPLHjInq8/UkVc56uAaYI/AAAAAAAAAHw/qc8S-IvIF2M/s320/941044_10151351146340518_1280667862_n.jpg" width="320" /></a></div>
<br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;"></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>I've thought about counseling but that's not something I want to do again as it has only helped 1/3 times for me. </em></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>I've tried keeping it to myself but it only got worse.</em></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>I have my follow up next week and I'm hoping there is something or someone who can help me!</em></span><br />
<em></em><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>I look strong and healthy and like it never happened to me but my thoughts and emotions are only just deciding to catch up and look for healing help.</em></span><br />
<em></em><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>I honestly don't know whats worse, this torture of my thoughts going crazy or the constipation that came with chemo (I still don't poo the same!)</em></span><br />
<em></em><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>So please, someone tell me how to get rid of Samantha</em></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><em>And if anyone has any advice that doesn't come in a leaflet, that would be fab. I know we are ALL different in our cancer but there has to be someone out there who's had all this too!" </em></span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I definitely couldn't have put it any better myself Sam, and many thanks for letting me use this incredible piece. To hear more from Sam you can follow her on Twitter @sam_lightyear</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">or keep up to date via her <a href="http://lymphomalesbian.blogspot.co.uk/"><span style="color: blue;">blog</span></a></span><br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com0tag:blogger.com,1999:blog-8749436707205297492.post-63376537110138931762013-09-28T18:52:00.000+01:002013-09-28T18:54:11.040+01:00Do you really want to know?<span style="font-family: Arial, Helvetica, sans-serif;">It has been an incredible</span> <span style="font-family: Arial, Helvetica, sans-serif;">few weeks for me, with my writing work. I have won an award, and started writing for<span style="color: blue;"> </span><a href="http://www.beautydespitecancer.co.uk/the-team"><span style="color: blue;">'Beauty Despite Cancer'</span></a> But more importantly, this blog has been shared so much, via social media, recently. The last few posts particularly, have received some fantastic feedback from the readers. I feel extremely happy that my vision of reaching significant numbers of people affected by cancer, is finally starting to happen, and we are now being listened to by some very important Health Professionals. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I have personally, invested a lot of time into this blog, because I believe that there is a need for an independent platform, like this. I am aware that there are a lot of people in the cancer community who are feeling isolated and don't know where to turn. It seems that as more people find us and spread the word, we are beginning to make a difference, and I thank you all for that! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">This weeks post came about from some comments that were left on a previous post regarding survivorship. I mentioned that I would like to have known about all the possible side effects of my treatment, to help me plan. The person who left the comments felt that, there was no need to know about something that may not affect you anyway, as we don't all get all of the possible side effects. Which I thought was an interesting way of looking at things, and was very different to my own! </span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-VtcwZtp0-aM/UkcVKlCXvmI/AAAAAAAAAZs/n2_RMUfbtqQ/s1600/Do+you+reall+want+to+know+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="http://1.bp.blogspot.com/-VtcwZtp0-aM/UkcVKlCXvmI/AAAAAAAAAZs/n2_RMUfbtqQ/s400/Do+you+reall+want+to+know+1.png" width="400" /></a></div>
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">On reflection, I have come to have sympathy with that point of view, but only after a lot of thought. This really is the joy of sharing! We don't all agree, but there is always something we can learn from others. I started thinking back to my first treatment permission form that I had to sign. It was full of things that may have happened to me, including dying during treatment. However, whatever the issues were I had no choice, or I would have died anyway! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">A lot of those things did not really affect me too much ironically. It was more about the things that I wasn't warned of! Thinking back, no one, even the doctors, knew what to expect. How my body was going to react, to the treatment, or how my mind was going to react to the after effects. Every case is unique.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">We all process information differently, too. Some soak it up like a sponge, and others want to know as little as possible. I now understand the point, that we can have an information overload, and we may well start worrying about something that will not affect us anyway. So I conclude that like most things connected with cancer,<strong> there is</strong> <strong>not one</strong> <strong>single answer.</strong></span><br />
<span style="font-family: Arial;">The response will be different in every case.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">In my own instance, I was informed about the physical battering that my body would take, and I was ready for that. Although, I can say that things were even worse than the picture I had painted in my mind. However, what really surprised me was the social and psychological impact that this has had on me. If it had been, mentioned at the time of treatment, that my personality may totally change, I would not have thought it was possible, and I'm sure I would have laughed! </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">The possible psychological effects were never mentioned, although I am yet to meet someone who remains unscarred after a cancer diagnosis. But it seems we have all been affected differently. Discussing these issues at the start of treatment would create more questions than answers, certainly! Is it a deliberate policy to avoid them? Maybe it is better that we don't know.</span><br />
<span style="font-family: Arial;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-hXT0mGXNAws/UkcVa7i8bbI/AAAAAAAAAZ0/77iGCnWvcqI/s1600/Do+you+reall+want+to+know+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="336" src="http://3.bp.blogspot.com/-hXT0mGXNAws/UkcVa7i8bbI/AAAAAAAAAZ0/77iGCnWvcqI/s400/Do+you+reall+want+to+know+2.jpg" width="400" /></a></div>
<br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">An alternative train of thought may be that if you knew all the possible side effects of your treatment, you may have made a different choice. Possibly a different regime, or maybe none at all. You may even ask how can you make your best decision, if you don't have all the facts? </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">In summary, it was better not to know in advance, about some of the things that have happened to me. Maybe it was done deliberately for my benefit. I think I was told as much as I could handle, and I think that varies, depending on your own circumstances.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Do you think you were given all the necessary facts on diagnosis? Would you have liked to know more? Were you given too much information? Would you have changed your decisions, with the benefit of hindsight? </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com8tag:blogger.com,1999:blog-8749436707205297492.post-6134494072042442042013-09-21T10:44:00.000+01:002013-09-21T10:45:54.991+01:00The Importance of cancer support via social media <span style="font-family: Arial, Helvetica, sans-serif;">Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net! </span><br />
<br />
<span style="font-family: Arial;">I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. <strong>Psychological and emotional support</strong> for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems. </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my <strong>own</strong> medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. <strong>Time is one thing that is not on our side!</strong> </span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-x_-7kfSi0tA/UjmwP7EgBWI/AAAAAAAAAZY/g8WQMHQBjZM/s1600/Cancer+support+and+social+media.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-x_-7kfSi0tA/UjmwP7EgBWI/AAAAAAAAAZY/g8WQMHQBjZM/s400/Cancer+support+and+social+media.png" width="284" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="color: blue; font-family: Arial, Helvetica, sans-serif;">"dear chris,<br /><br />first some background of what I believe has given me a clue
about feeling lost. both my husband and I had cancer at the same time - his was
multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission,
also at the same time! we decided to mix the "new normal" and live
"life-reinvented", gloriously and to the fullest.<br /><br />sadly, only 9 months
into remission, hugh died -<br />very suddenly. I found him next to me in our bed
with no respirations or pulse. after 3 days in cardiac ICU, he was removed from
life support, and I was a widow. <br /><br />two months later I was diagnosed with
uterine cancer, ST 3 with mets to the cervix. I am starting tx this
week.<br /><br />it's my belief that feeling lost is really grief. I know grieving
for my husband is a separate (though certainly overlapping) process. but I have
spent a great deal of time in retrospect, and now realize that what you spoke
about reflects what hugh and I lived when we were in remission - a desire to
live on our own terms and not on cancers' term. now, as I navigate towards tx
with a new cancer alone, I can reflect in a more realistic way on what both hugh
and I might have suffered post treatment - and I know we did feel tremendous
grief at the loss of so much. but you see, it was we two, still crazy in love ,
desperately wanting to celebrate life. there were times we hid our pain and
fears and losses - our grief - to help one another be happy.<br /><br />as I grieve
profoundly for my beloved, I feel extremely grateful for all those nine months
we had, as well as the time we had cancer together. it almost seems a
meant-to-be-ness that we became so utterly entwined and in love with each other,
and a same meant-to-be-ness that we were able to live so happily those 9 months
- ignorance was truly bliss.<br /><br />in retrospect, as I read your post, I ponder
what all would have befallen us had we not been a couple with cancer, nor
achieved a robust remission together, and not flung ourselves head long into a
life of adventure and delight. my conclusion is that eventually grief would have
had it's way with us, I've wished many times to be able to bring clarity to so
many mixed emotions, chris. sometimes my widow's grief is the overwhelming force
in my life - hugh has only been gone since may 5th. but as I near treatment for
the next gauntlet of cancer to go through now I am more typical of the
individual who will face it alone; and even if one has faithful and supportive
spouses, family, friends, and whole posse of good doctors - there is still the
loneliness, insecurities, fear, and feelings of helplessness. <br /><br />the big
question is how in this day and age, could the medical community dismiss the
element of grief from our care. the bigger question looms with more urgency -
when and how will the message be delivered, loud and clear, and be dealt with by
clinicians who simply give no validation to their patients, leaving them bereft
and feeling lost and grieving. <br /><br />chris, I can't thank you enough for
sharing your story in this post. for months I've had such niggling and confusing
feelings about insecurity, fear, and at times, just wanting to walk away from
all things cancer, thoughts that are so foreign and disturbing. being able to
comment meant I had the task of trying to figure out the very bewildering and
sad and overwhelming issues you brought to the forefront. and I am so grateful
to have had your post to finally be able to have clarity. <br /><br />I am so sorry
for all that you have had to go through. you are amazing, and a wonderful
resource for superb support and the education you give so generously to others.
I hope with all my heart it will all come back to you a thousand-fold. keep
writing - you do it so well, and your are helping legions of other's whose
hearts, minds, bodies and souls are hurting.<br /><br />much love, and lots of warm
hugs,"<br /><br />Karen, TC</span><br />
<span style="color: blue; font-family: Arial;"></span><br />
<span style="color: blue; font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><strong>My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.</strong></span>Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.com6