My journey has a bowel transplant patient has taken me off in a number of directions over the last couple of weeks. Some have been great some not so good but again all paths lad back to The Churchill Hospital in Oxford and the transplant unit and my surrogate family. The route to this particular visit has been interesting though and as I sit in room 11 having just ordered a take away pizza (sorry no free advertising of any pizza chains on this blog that is unless free pizzas are on offer) for some hot food at a decent time I thought that I would tell you about the latest instalment of being a patient, bowel transplant style.
On the health front the last couple of weeks went like this. Innocuous lump removed from the right side of my face, gastric emptying study that involved being faced yet again with the glorious sight of radioactive eggs and cold white toast, diagnosis that the lump was cancerous (more later), outpatient clinic appointment resulting in new antibiotics for bacterial overgrowth, lengthy time on the toilet and now a 2 day MOT back in hospital courtesy of an endoscopy and biopsy. There you go blog post done!
Without doubt the worst part of it all was the mental challenge on eating those radioactive eggs. What made it that extra bit special was the initial comforting words of “just do your best and eat what you can” which were then followed about 10 mins later with “is that it, come on you can do better than that the very least you need to do is eat all that egg.” I am now making it my personal mission that the next person who makes me eat those radioactive eggs will be strapped to the seat next to me and be forced to do the same.
Before we got to the gastric emptying study there was this small matter of a little lump on my face. Now let’s be honest with you I’m no Tom Cruise so the odd lump and bump generally goes unnoticed as part of my rugged good looks but when Karen the transplant nurse looked strangely at my face and said that I had better get it removed it still didn’t dawn on me that this was anything more than a wart or an odd bump. I had done my research via my friendly doctor (google) and knew that if it was cancerous it would either be a BCC or an SCC and the better one if there is such a thing was a BCC. Well in true Michael style I had to get SCC. Now I know it isn’t a complete disaster and whilst I have been told that the likelihood is these lumps and bumps will come back and need to be removed as long as I am checked regularly then it shouldn’t progress in to something more serious. It does freak you out though. I mean all those questions flood in to your mind in an instant. Why is it that normally I cannot work out how to put one leg in front of the other but at that moment the brain went in to over drive. Why? How? Why me? What if? All those things that no one could answer and I was probably stupid to thing just came blurting out of my head. It was all a shock to Justine as well but then I think we both came to the same conclusion. You just have to get on with things. These hiccups are part of the bowel transplant journey and I guess the words that my surgeon said right at the beginning of this whole process “remember you are swamping one set of problems for another set” rang true.
And then it really was time to dust myself down and get on with things and go and spend some time with my favourite and closest friend, the toilet seat. Yes Terry the toilet (named after John Terry the Chelsea captain because like my Terry he is also full of s..t – sorry the QPR fan in me comes out way too often) and I became very firm friends again which is why I ended up back in room 11.
I arrived on the ward at the given time to be told immediately that I was going for an endoscopy at the other hospital. There was no time to get hospital transport as the slot had become available now and in any case waiting for hospital transplant to be on time can be a bit like waiting for decent food on the ward, it doesn’t happen so some bright spark who shall remain completely nameless TIM said it would be quicker to walk. Now when your bowel transplant surgeon tells you only to listen to him most sensible patients would do just that instead this time I let my guard slip just for one second and took TIM – yes TIM’s advice and started walking. Anyhow I eventually got there for my endoscopy when in reality I think I needed oxygen and a ventilator but they soon put me to sleep and took the biopsy from the small bowel. As I sit here now the biopsy shows no signs of rejection but it does show some other issues that need to be sorted. Those coupled with my inflammatory marker being pretty high has resulted in me being put back on steroids and awaiting new infusions for vitamin deficiencies and trace elements. Who said being a patient was easy? Being a bowel transplant patient continues to be an ongoing mental challenge.
Away from bowel transplant world I have been working on the hospital food campaign again.. We seem to be gaining real momentum on this front and I am determined to see this one through and get the changes patients want. Tonight my sandwich was served at 4.40pm. Come on who eats dinner at 4.40pm, no wonder I needed that pizza. Mind you my room does smell of a pizza factory right now – deep pan too with garlic mayo :)
I mentioned before that I have been trained as a co facilitator by the Centre For Patient Leadership (CPL) and I have done another two days coaching on the patient leaders programme. It is fascinating that the very people who need the coaching are the ones who say it is rubbish. Ironic if you ask me. Oh and I nearly forgot to mention that I have won a place on a fellowship course at The School For Social Entrepreneurs which I am incredibly excited about. The guys at the CPL recommended that I apply and I never expected to get in but somehow they saw something they liked. I knew those rugged looks would come in handy at some stage. The school is about developing people who are looking to build sustainable businesses that have a community aspect to them. I am hoping that the work that I am privileged to do in this patient arena will lead to a new beginning. New beginnings are not something you think about when going through long term illness. My working life has been littered with stop starts due to surgeries and ill health but I am determined that this transplant will be a new beginning. It is blooming tough though. There you are, learning to get over the physical side of your transplant, cope with the mental roller coaster, take care of your family and then try and reboot your working life. I think that last bit gets forgotten at times by those that don’t experience what long term patients have to go through. You see you can’t just pick up the pieces and start running because every single day there is something that reminds you that you are still a patient. And then for me there is QPR. If I can cope being a fan of theirs then I can cope with anything.
Next week I will be introducing some guest bloggers to you so please look out for them here very soon. They offer another patient’s perspective on life, from outside the IBD family.
I want to just end with this one thought. A very dear friend came to visit me today and asked me a very interesting question. He wanted to know that with everything that keeps happening and the fact that some of the time there are no answers as everything is new; how is my relationship with my surgeon? Do I still have that trust and belief and close relationship that I had at the very beginning? For me the answer is very simple my belief and trust in my surgeon, my nutritionist and the transplant team is as strong as it could possibly be. They are without doubt the very best team in the world and it is a privilege to be under their care. What I do realise though is that in many ways we go on this bowel transplant journey together.
Tonight’s post is actually dedicated to Mr Knight. Thanks for kicking my backside in to shape to write it.