Sunday, 29 December 2013

A new perspective

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.

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! 

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.

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.

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.

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.


(If you would like to know more about this work you can contact Anna HERE


We all have a value to others, although sometimes we can't see that. 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! 

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!


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!

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!

 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.


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.

This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. 

Vote for Chris’s Cancer Community in the UK Blog Awards


You can also follow our community on FACEBOOK 

Sunday, 22 December 2013

The best Christmas present ever!


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 any time off. Celebration time or not, it continues on it's destructive path.

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 
happening in your life. 

I will be experiencing at first hand, the pressure that patients 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.
However, this time of the year is a particularly poignant time  for me.
Six years ago, I was in an isolation unit, undergoing a stem- cell transplant.





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 Anthony Nolan Charity.

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.

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!
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.

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.
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.
I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends. 





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.
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.
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? 

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.
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.

This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. 
Vote for Chris’s Cancer Community in the UK Blog Awards

You can also follow our community on FACEBOOK 








Sunday, 15 December 2013

Coping with life during treatment (Dee's story)


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. 

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!

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!)






"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 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.

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.





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".

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 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.

Chris's Cancer Community is now on Facebook. Feel free to join us there too! 


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Sunday, 8 December 2013

The joy of sharing!

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. In my life before cancer I was a party animal. 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! 

But then I had a 'light bulb' moment! My life is not only about me. 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.





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 sharing. 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. 

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. 

However, sharing doesn't come easy to many. A lot of people prefer to be very private with their thoughts and deeds. 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.  





The real value of my life, is sharing what I have left, with others. 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.

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.

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  'Chris's Cancer Community' Facebook site to aid sharing. It would be much appreciated if you could click the LIKE button, and SHARE :) Tu for playing your part!!!

Are you a sharer, or a more private person?  Do you get similar benefits to me when u share? 




Sunday, 1 December 2013

Always grateful, but still feeling guilty!

Winter can be a difficult time, even for those in reasonable health, but for me, it is becoming my personal nemesis, and I look forward to it less each year! Here in London, 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! 

You would have thought that after 6 years of similar cycles, I might have learnt, but no! Far be it from me to disappoint. I am like the baby who continually puts his fingers in the electric socket, to find that it hurts, every time. 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.





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 frustration. 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 grateful, I am and always will be, of course, but sometimes forget! But guilt is the most difficult emotion for me to live with.

Independence, 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! 

Not only is it my 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! 

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.





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!

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! 

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. 

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 





Sunday, 24 November 2013

Do you get the support you require?

This week has involved a great variety of work, and I have had a lot of communication around one subject, cancer support. 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.

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.

 


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.

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? Is it because the type of support they require, just doesn't exist? I may be entirely wrong on this, so this is why I ask the question in this blog.

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.

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.

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.

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.

 
 


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.

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.

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.

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












Sunday, 17 November 2013

Coming together in adversity

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.

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.

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 psychological and emotional issues of cancer. However, my preferred method of contact is in person, 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.

 


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 haematology conference. 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.

The previous day I was speaking in London to a group of policy makers 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.

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 'real time' 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.

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.

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.

 


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. What is the value of experience if not shared? 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.

A very recent demonstration of this, is what is currently happening in the Philippines. 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?






















Sunday, 10 November 2013

Do you know that feeling of isolation?

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.

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.

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.
 
 


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.

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.

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.

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.

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.


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!

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.

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!








































 

Saturday, 2 November 2013

Time is the real currency of my life!

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!

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.

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.

 


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.

We all have a value to others, although sometimes we can't see that. 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! 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!

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!

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!

 


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.

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.

How do you value yourself? How do other people value you?







Sunday, 27 October 2013

The joy of youthful innovation in cancer support.


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.

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.


 


This stimulates innovation, 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 psychological and emotional issues 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.

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.

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.

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.

"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

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."

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.
If you would like to find out more about what Becki does, take a look at her brilliant blog or contact her on Twitter @LoveEire4eva




Saturday, 19 October 2013

" Unfortunately, science hasn't caught up with you yet! "

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.

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.

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!

 
 


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.

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. 

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?

 


My campaigning, for improvement in cancer treatment/support cuts across all cancers and I was very interested to hear about the work that Lord Saatchi 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. 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.

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.

The above are my views and opinions, and it would be great to hear yours. What do you think? Do you agree/disagree? 








Saturday, 12 October 2013

"Wearing cancer like a badge?"

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.

I am mostly sceptical 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!!

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.

Asked if she thought some people keep wearing cancer like a badge, she replied:
'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." '

 


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.

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.

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. Mmmm, for most of us, it is like a job, but one you don't get paid for! 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.


 
 



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.

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!

I have attached the full interview here. Generally very insightful










Saturday, 5 October 2013

Young people deserve better cancer support!

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!

By chance, I have spent the last week, involved with some young people. I have attended a presentation by Shine Cancer Support and was privileged to meet several, vociferous people. I also met many young people raising money for Macmillan Cancer Support #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter.

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.

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.




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.

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.

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.

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.

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.

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.


"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!





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. 
I've tried keeping it to myself but it only got worse.
I have my follow up next week and I'm hoping there is something or someone who can help me!

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.

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!)

So please, someone tell me how to get rid of Samantha
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!"

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
or keep up to date via her blog