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.
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.
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.