Happy Bowel Day!

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

5 Replies

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  • I'm so very sorry to hear this and wish you well.

  • Wish you well and look forward to your next update and hope it is better news

  • Just the fact that you can send us your update is awesome. It goes without saying that we are all (I'm sure) rooting for you!

  • A very honest and true blog about your illness and treatment and your attitude towards it is awesome. I wish you every success for your future - yes future!! You don't deserve this but have chosen, as you say option 2 - well done to you.

  • Oh,I am so sorry this has happened to you.

    I'm being treated for breast cancer so tho I'm not hooked up to a toxic drip,I an having what they call oral chemo. Boy,did that do a number on me.

    You just think to yourself that you need to get thru the surgery and then heal,but then you find yourself fighting the bloody side effects!

    I wont say I understand where you're coming from cos we all travel our own path,but I CAN imagine.

    You seem to think like me,as regards attitude. I always say,when life chucks a dollop at you,you either allow it to push you down,or you decide YOU will be on top,and fight!

    So you do that and if you want to chat,just get in touch,ok?

    I don't have answers to most things but I am happy to 'listen' if you need to off-load.

    I think your idea of a blog is brilliant. The more we share about our challenges,the more we are educating others.

    My prayers are with you,

    Elaine xx

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