Today was a strange old day in my bowel transplant world. It started with 32 pin pricks in my arms as part of food allergy testing before continuing with two sets of blood tests covering only about a dozen test tubes. The morning then finished with an in depth discussion about my eosinphils at which point I really wished that I had paid attention in biology instead of flunking my exams. All of this was in the name of assessing whether the recent biopsy that indicated I had food allergies was correct and if so could we easily isolate the problem food group. The short answer is that I will go back for more blood tests next week as the eosinophil levels seem to fluctuate a little. All rather complicated for my bowel transplant brain but the actual consequence of it all is spending far too much time on the “John Terry” (if you read the last blog you will know what I mean) and a stomach that sounds more like a bubbling volcano.
Aside from potentially dodgy bowels the dermatology clinic have now referred me to their transplant unit that deals with the types of cancer than mine was. I am reliably informed that the reason for the heightened risk of it returning is due to being a transplant patient and being on immunosuppressants. The end result is that I will now have 3 monthly checks for life. Yet again I am incredibly privileged to receive amazing care at Oxford. As I write this another patient that I have spent time talking to has just undergone a bowel transplant and the gentleman who I managed to get down from Scotland is about to leave and go home. All part of daily life there except it isn’t normal daily life and I can’t imagine a day when I will ever not think of Oxford as part of my life.
That doesn’t mean that I am sitting still feeling sorry for myself. Those of you who hopefully know me by now will know that it isn’t in my nature just to sit. Believe me I wish I could do more than I do but I am starting to rebuild my life. It has made me think though about what rebuilding my life actually means and what do I want to do with my life. Then I got thinking about whether all long term chronically ill patients have the same thoughts. A kind of mixture of being scared about the future and excited about the opportunities. I want to make the most of every day yet it means totally rebuilding my life from scratch and you can’t help but worry.
I sat at the dinner table the other night talking to the kids about my ideas and about what I want to achieve and how I am going to do it. Now as you know I really do have the most incredible kids; but at one point in the discussion you could see and almost hear the doubts and nervousness that they have about the future. They have to be the least materialistic kids I know, except that is when my daughter wants Victoria’s Secret knickers. At 13 I ask you. Anyhow what they have always said is that one day they would like to go to New York as a family. Not unreasonable in my view and I started saying that it will definitely happen and just wait and see. For the first time though I could sense the worry about will dad get back on his feet again and will normal life resume. I guess the proof of the pudding will be over the next few months.
What the kids do I hope see is a dad who is trying to grab with both hands the second chance that the brilliant transplant team have given him. The more time I spend with patients from all sorts of backgrounds the more I realise that so many of us share the same worries and concerns. It is just how we deal with them that is personal to us. I do believe though that our relationship with healthcare professionals can have a profound impact. How we interact can set the standard for our future behaviour. My luck is having a team that positively encourages me to believe that nothing is impossible. Patient engagement is not just a passion of mine it really has become something I believe must happen. This was the speech that I gave to the Scottish Health Council about using social media and existing technologies to engage better with patients.
I was asked yesterday via twitter what the reaction had been and then the following question was posed to me. “If I had a magic wand what would I like to see happen?” Now I have my views but I wondered what yours would be? Please feel free to post a comment below.
From my side it has to be about real change in the way healthcare is delivered. That includes at the heart of it all patient engagement strategies such as social media, video calls and an obvious on line presence. I recently wrote a post giving my own personal assessment of the Royal College of GPs response to Patient Online. Again have a read and I would welcome your thoughts. Some of the findings are fascinating. So this is my passion and something I aim to build on. We should be launching the new Oxford Transplant Centre website and digital strategy by early May so I will update you on that very soon.
Away from the patient world my attention this week has turned to our charity and the annual Paris 2 London bike ride for Crohn’s and Colitis. I just thought that I would share with you the video highlights of last year’s ride in the hope that it might inspire you to want to take part. So please excuse this plug but this charity means so much to me. We have raised over £250,000 in 3 years and my goal has to be £1 million so come and join the fun.
Over the next week I will be sharing with you two guest blog posts that I think you will find fascinating. They are not bowel disease related in fact one is from a carer of a cancer patient and one is from a fantastic healthcare strategist on empathy but I will tell you more when I post them.
Till next time
PS – I need to tell you a funny story quickly. April fool’s day comes and goes in our house usually without any fuss. This year we decided to do something different. My middle son Nathan (of youtube channel Nathansgotfish) has a small fish tank in his bedroom with what can only be described as 6 versions of a goldfish. Sorry any fish experts for my poor description! Anyhow when he came down in the morning I told him that the pet shop had phoned and that the fish may have developed arthritis in their joints. He needed to sit by the tank and count how many times in 5 minutes that each fish swam back and forth and then write that down in a chart. I then told him we would take that chart to the pet shop as they might need a cream. You can guess the reaction when 4 hours later on our way to the pet shop we told him to check what day it was……