Am I Really So Fragile?

Am I Really So Fragile?

I have spent the last six years, making a lot of ‘noise’ about cancer and it’s issues. It has been a mentally and physically demanding time, and on reflection I don’t know how I have managed to do all the things I have. If I was in perfect health I would consider it a great achievement, but you see there is my problem! Where my cancer support work is involved, I seem to have a ‘blackout’ about my own health problems. I can only remember the really healthy guy that I used to be before my illness. My wife and clinicians are constantly reminding me that I need to be careful, and less generous with my time, but of course, I rarely listen and when the opportunity to help someone comes along I am there.

As I have become increasingly well known in the ‘cancer community,’ my invitations have become more high profile, and my influence is growing, which is the very reason I started my work. Now I am invited to talk at key conferences, and people know all about what I do, through my presence on social media. Of course, these opportunities tend to only come once, and cannot be rescheduled around my own health. Last week I received a call out of the blue, inviting me to be a key speaker at a bone marrow transplant clinicians conference in Stockholm, Sweden.

Of course it didn’t take me long to say “thank you, and I would be delighted to attend.” My wife wasn’t so happy and told me I would struggle with the demands of travel, and delivering such a prestigious presentation. When I got the travel itinerary, reality started to bite! A 315am start, arrive in Sweden for lunch, then deliver my talk just after. Meet everyone then back to the airport and arrive home at 830pm.

Am i really so fragile

I started to feel very tired after a few hours, but on arrival at the conference, I heard some incredible physicians talking about the complexities of the treatment I had received. It was so interesting to hear these sort of conversations, my treatment in real terms, the issues around keeping people like me alive, with a quality of life too. But at lunch the anticipation was building, as everyone was saying how keen they were to hear my story, I’m just a patient I thought!

Then it was my turn to deliver, what an incredible audience, some of the most famous clinicians in Europe for my treatment. The room was full to bursting point, and it went very quiet as I took to the stage. After my presentation I hosted a Q+A with some fantastic questions. This was an incredible opportunity for us to share our experiences! Afterwards I was approached by many people who said they had never heard a patient talk with such knowledge and passion, and had learned so much from my story.

But as the adrenaline slowed I started to feel poorly, with a few more hours of travel in front of me. By the time I got home, I looked like a ghost, with red eyes popping out of my head. The following morning I was shivering and coughing, and couldn’t get out of bed, I felt awful! Since then I have felt lethargic and am resting frequently, I was unable even to write my weekly blog.

So what did I learn from this experience? My work is making a massive difference now at a senior level, but I MUST accept that my body is weak. Having listened to the guys at the conference, I know that with all the complications I have had, I am extremely lucky to even be alive. Of course my body will not get better, and the longer things go I will get weaker. After seven years of treatment, I am compromised in so many ways, however my mind is still struggling to accept that.

Am I really so fragile 1

Rest they say, but how I reply? My mind is eternally busy, so much so that I can’t sleep without medication to shut it down. Why have I been given extra life, I’m sure it’s not just to look out the window and study the view? If I don’t slow down I’m going to be very sick, but if I do, I’m going to be very fed up, there is my conundrum. This weekend has taught me a massive lesson about my own fragility, but how am I going to go forward with my life? Being unable to do many things that I used to take for granted, feeling exhausted in most social gatherings, sweating when I go into crowds.

I already ration many of the things I do, and of course, travelling to Sweden and back in one day, would not be on my normal agenda. I try to only do things on alternate days, but even that seems not to be good enough anymore. I face a massive mental challenge for 2015 now, as I look to arrange my diary. Do I now reduce my work to one day a week, and if I do how will I cope mentally with that?

This has been a major problem for me, to accept that I am no longer capable of doing what I could before. Each time I push myself too much I get sick, so you would have thought I would know by now. Through cancer and it’s associated treatments we all lose a lot, but are you like me and struggle to accept that you have? Have you found a discipline that helps you deal with this issue, or have you accepted the changes and dealt with them? I would love to know how you are coping with this, so please feel free to share your experience below.

 

The Grove Hotel Bournmouth
 I am very pleased to be an official Support Partner of  The Grove Hotel in Bournemouth, which is the only hotel in the UK specifically for people affected by  cancer.
10 Comments
  1. Chris,

    You face a conundrum shared by others who have chosen to “pay it forward” while living with cancer and the many after effects of treatment. The late David Servan-Screiber, when asked if he wished he had slowed down and taken better care of himself, said that he would not have done anything differently. I think living with passion and purpose is so important. Finding that balance with one’s health is so difficult.

    I have no words of wisdom; just words of encouragement: Know that you make a difference! And please take care of yourself!

    Carpe Diem!

    • Hi Pat, you understand perfectly my issue! I am sure it is one that many of us, including yourself, face. When I entered the world of Cancer Support I wanted to make a difference, but never anticipated I would be working at the level I now am.

      It was something that I did in between my treatment, now it has become like a full time role. I have come a long way, but there is only me. The work side of me wants to progress things, but my brain says no.

      My hope is that the New Year will show me the right way 🙂 Carpe Dieme!

  2. You are a true inspiration Chris, I’m only six months into my ‘rest of life’ treatment, I can still lead a relatively normal life but I have had to slow down. I understand your conundrum, the desire to live life to the full against the necessity to rest! I guess we cancer fighters program ourselves to push on and it’s only when our bodies shout at us do we listen. I hope you feel better soon, sending you lots of healing vibes

    • Thanks so much for your comments Abi. I think you are right there about wanting to push on. Like most of us, I have lost a lot to cancer, and I don’t really want it to take this ‘passion’ for work either, but I am very aware that I live life on the edge physically.
      My wife, family and friends have supported me through some terrible times, and share the mental anguish I suffer, so it is not fair to them if I save the best bits for my ‘public face.’ Work naturally slows as the holidays approach, so then will be a good time to take stock of things.
      I wish you well with your own treatment regime, and lovely to share experiences with you, Chris x

  3. Hi Chris, You did not listen to my words the other day, we CANNOT live like we used to do, you are a living miracle surely that must help to be able to slow you down, you cannot go on like you are doing, or you will end up not being able to do anything in 2015. Do I sound hard? I am not because this is always being said to me and I like you I never listen, I am always right (so I think). Please cut your times down please listen to me. I really feel for your wife and family they are just as important as you are. I would like to hear in the next year or two that you have had your 60th birthday and I will come down to London to celebrate with you and family. I know how my late husband had to fight to stay alive he was told he would not live to be 21 years. He passed away at 58 years because he worked and lived at the right pace for him and because he had a wife and family who loved him, just like yours he too slowed down enough to live a comfortable and happy life. So Chris do what he did slow down pace yourself. I do hope you do not think I am preaching but it will be worth it in the end. Think you!!
    love and best wishes to you and your family. Georgine x

    • Hi Georgine, I always listen to you! 🙂 I love the story of your late husband, which is a great example. My work has become a great distraction from my own health and I am convinced that in many respects it is helping me. However I never imagined that I would be invited to do the things I am now doing.
      I really do not rest well unless physically tired, as I have a business mind.
      But I am conscious that it is always my wife who ends up picking up the pieces, and the public get my best bits. My previously arranged engagements are nearly completed with another vist to No 10 in a couple of weeks. My thought is that over the holidays, with time spent with the family I will be able to see things more clearly.
      You would be an honoured guest at my 60th Georgine 🙂 Thank you so much for your kind thoughts, and I know you are not preaching, Chris xx

  4. Hi Chris, I wondered if I was hard on you the other day after I had sent my blog and read it out to my husband he said it was ok but have just read your reply so feel a bit better. I think a lot of the way I am is because I have been on both sides of the fence (so to speak) I tend to forget about myself and think of the family so in a way being that I am older (75) helps, we do take things a bit easier in later life. I just feel you have done such a lot of wonderful work (and I have only known you for a few weeks)it would be a shame if you were not able to share old age with your family as it can be a wonderful time if you let it. Don’t forget the party!! how many years to go? What a wonderful man on the video, you are both in your own ways making life better for a lot of people. Best regards as always Georginex

    • Hi Georgine
      Thanks so much for your very caring comments. No you weren’t at all too hard on me. You are absolutely right and I have taken note 🙂 I still can’t shift my lurgy and I think I have learned a lot from this episode.

      I am already making some decisions about what I do next year. My party should be in 18 months and I fully intend to be there 🙂 Tu xxx

  5. Hi Chris
    I so hope that you are feeling better having taken some rest. It seems we all have these similar traits, and I believe it’s about ‘how’ we individually address these issues. I can advise you as I am sure many do, but at the end of the day it is about your relationship with yourself. Your compassion to yourself. Your commitment to look after yourself. And your awareness for how much you can healthily achieve and how you go about sharing your time and energy. No one else knows what it is to be you or what your priorities are or what and why you want to achieve your goals. All I know is I too face these questions and believe if we are to maintain positive change we must invest our time equally in looking after ourselves, (if not more)! I believe we got cancer because we didn’t listen to our bodies/needs….that’s my current belief. And if we don’t listen and don’t do things differently we don’t get well. Our bodies are very fragile whether we like it or not!
    I will ask you one question to ponder….what is your long term goal and how do you see yourself fulfilling that? What do you need to put into place to enable those things to happen. Put aside your campaign work and ambitions, I believe you know these goals, but what about the other areas of your life? Self care means investing your time in looking after yourself but first one needs to identify the ‘things’ that help us individually. For me my journey is currently strongly focused on doing the things that enhance my health, in the hope that these things will help me improve the quality of my life and energy, and in that way I hope to improve my ability and stamina to help others. This new approach of putting myself first and working out what my needs are is scarey and painful at times too. It’s not easy to look at our belief systems and un-met needs and all that psychological stuff!
    Some of the important things for me include mindfulness, counselling, healthy eating, fresh air and walks, time for my hobbies, friends, interest, family time, discovering new interests such as Alexander Technic, yoga, spirituality and sharing my thoughts via social media!
    As always I ramble on and ask more questions than I intended!
    Please take care of yourself Chris, I feel you are very fragile at the moment. I would encourage you to make little daily changes, not wait till next year or Christmas. How can you help those closest to you?? As well as yourself?
    My best wishes and appreciation for listening to us all and giving so much. It’s time I feel that you do that for yourself now!
    Tricia

  6. Hi Tricia

    You never ramble on, and as always you make some fabulous points. I do indeed know where I want to go with my cancer work, but struggle beyond that. I have now decided to take some help that has been offered, to enable me to define my own personal path forward.

    Before illness my goal was a comfortable retirement involving travelling with my wife. Now that has to be re evaluated as I can’t travel as much as I would like and don’t really wish to retire.

    So new goals it might be, and hopefully more answers than questions! I’m so pleased how you seem to have your own life worked out now. Thanks as always for sharing your wonderful experience, Chris

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