On the 8th October I received a lovely text from my transplant nurse co-ordinator. It simple said “Happy Bowel Day”. She had sent it to mark my 3rd birthday as a bowel transplant patient.
Later that day I received a call from my transplant surgeon. He simply said “the biopsy confirms it is cancer.” So on my 3rd bowel birthday I was diagnosed with PTLD. In ordinary language is a cancer brought on by my anti-rejection meds and immunosuppressant’s. It is high grade B cell lymphoma known by its more common name non-Hodgkin’s-Lymphoma. And so begins chapter two of Being A Patient.
The first chapter was all about the journey through transplant. Whilst I intend to be very honest about this journey I want to focus on the outcomes. I recently met a very clever lady Dr Rachna Chowla from OBH who talked about moving the conversation from doctor to patient to a conversation about “us”. About agreeing shared outcomes. After all as a patient isn’t it all about the outcome however we define them? In my case our shared outcome is, of course, to get rid of the cancer. Our other shared outcome is managing my treatment sessions around maintaining a relatively normal daily life. To me that will be vitally important.
My treatment regime will be 6 chemotherapy sessions and two further antibody treatments and will stretch across twenty four weeks. The chemo treatment is known as RCHOP. What makes it more complex is that usually you would also reduce the anti-rejection meds but there is only so far you can take these before risking rejection. So as always a juggling act needs to take place. If my blood levels alter is that the chemotherapy or the bowel causing it? Side effects such as diarrhoea or constipation are common but in my case is that a bowel issue or chemo issue? And so the questions go on.
I have had my first chemotherapy session which knocked me for six. It really does feel like you are putting poison in to your body and actually you are. Probably the two biggest effects over the last couple of weeks have been the fact that I constantly feel shattered and like I have a heavy dose of flu. Add in a dose of nausea and aching joints and things are ok. Session two is next week so we will see what joys that brings.
“How do I feel” is the question everyone kindly asks me. In truth I am not sure how I feel. Pissed off, yes. Frustrated yes. Upset for my family yes. But actually the way I see it is that I have two choices.
(1) Lie down and give up. Moan about my life and how it isn’t fair. All of which I think is justified.
(2) Accept it and get on with it.
So I have chosen version 2. For now at least but I reserve the right to have the odd lie down and the odd moan.
My blog has always been a way of explaining my journey. With this chapter I want to find a way of delivering solutions to issues that I encounter on my way. Issue one has occurred within month one. I have to have blood levels done for my chemo treatment and I also have to have regular bloods done for my transplant. The haematology dept where I have my chemo will have all those bloods on their system electronically. The transplant team however cannot add their request to the same set. So when I get to the hospital I have to go to the transplant unit and pick up hand written blood cards and take them to the haematology dept for them to add them to their list. Crazy, but true.
The solution is very simple give everyone access to the same system. So that is my month one mission. Shared access to blood test requests. I will let you know how we get on.
Till next time
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