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