I’ve not written a blog post for ages. Lots of stuff, both medical and fun, has happened and is happening. Nothing serious or life-threatening on the medical side, although the visit from the Critical Care Unit nurse while I was in hospital with the infection the other week was a tad disconcerting. However, I’m out of hospital and well… and yet not writing.
Whatever the reasons, which I won’t get into here, I’m annoyed that I’m not finding the motivation, space and time to write, as I’d like to keep up a steady record of this odd journey I’m on.
Today, however, I was on a train with my iPad, so it was an ideal opportunity to just write. I especially want to publish a post today because it’s the two year anniversary of my stem cell transplant and as such needs to be acknowledged here.
I am acknowledging this momentous achievement in other ways too…
I’ve been to London today (thus the train journey) to be recorded in interview about my experiences post-transplant. It’s for a video Anthony Nolan are making as part of their ‘A Road Map for Recovery’ campaign. They are pushing for a change in how late effects post-transplant care is funded and managed. They have already used some of my story in the campaign report (I’m on page 23).
At present, the first 100 days post-transplant is funded by NHS England, whereas afterwards, it’s down to the regional Clinical Commissioning Groups (replacing Primary Care Trusts), which means that patient care could vary depending on where they live.
Funding-wise, it’s that cliché of a ‘postcode lottery’, but for patients, it’s just their recovery, their symptoms, their treatment, their experience and most importantly, their life. People do not fall into defined milestones as simply as funding criteria do. Anthony Nolan want all post-transplant care to be covered by NHS England so that every patient has access to quality care no matter how many days after the transplant they need treatment or support.
As part of the campaign, Anthony Nolan are creating a short animated video to put across the experiences of transplant patients, so politicians and health budget authorities can understand better how it is for us. They think my story is an excellent example for the campaign. I had very few medical needs in the first hundred days, and only minor issues in the first year. Almost all of the Graft versus Host Disease [GvHD] that has needed treatment began a year or more after my transplant. I have been very lucky in that my care has been seamless and excellent throughout. But others will have not had such a good experience.
I am more than happy, honoured even, to speak about my experiences, even the indelicate bits. Being articulate helps, although being succinct required some prompting, which won’t surprise anyone who knows me.
After the interview recording and before I took the train home, I had a joyful half hour cycling on one of the many hire bicycles available all over London. You can easily just hire a bike for half an hour to get somewhere and drop it off at your destination, for just £2. It’s one of the best £2 I’ve ever spent I think, taking a bike from Pimlico, along the river to Westminster, up Whitehall to Trafalgar Square and then to Charing Cross, where I neatly slid it back into a cycle stand and continued on to St Pancras station by tube. I thoroughly recommend it. What was even more special for me was that this was the first cycle ride I’ve done this year. It felt really good.
When I arrived home, I was greeted by a close friend, without whom, this journey would have been a hell of a lot harder. She brought me a wonderful anniversary gift… a beautiful cookery book that I’ve lusted after for a while: Jerusalem, by Yotam Ottolenghi and Sami Tamimi. They share not just recipes, but also histories and anecdotes from all the different communities that make up today’s culinary experience in Jerusalem, with the obligatory enticing photographs.
Even if I never cook anything from it, I will get great pleasure from just opening its pages. I was touched by receiving any gift at all and delighted with this one in particular.
Later this evening, we went out for dinner at one of Nottingham’s top restaurants, World Service. Being an avid Masterchef fan, I expected tiny portions of beautifully presented foods, served on pieces of slate and adorned with ‘foam’ and ‘micro herbs’. However, I can report that, while pleasingly presented, the food was served on plates, looking like food, tasting excellent and in a relaxed and relaxing environment… and all washed down with a rather decadent bottle of Sancerre.
Last year, a group of six of us went to Paris for the day to celebrate my one year anniversary. It felt like a very big deal. This year feels important but I didn’t want anything so grand or glamorous. I’m feeling quieter, more reserved and reflective, so I wanted something much lower key and closer to home.
This year, a different group of six of us are going for afternoon tea at Chatsworth House tomorrow afternoon. Some of us may go for crayfish and champagne in true celebratory style, but that’s not obligatory, just tea, sandwiches, pastries and a scone, preceded by a gentle walk on the estate will be lovely. Just doing something elegant and special yet quite simple seems totally apt and I am looking forward to it in a calm, happy way, rather than the slightly crazed excitement of last year.
This year I’m in a different place with my emotions and my attitude. I think I am more accepting of steadily continuing to live and working out how I want to do that, compared to last year’s thrill and manic delight in still being alive.
Who knows how I shall feel at three years? But it feels good to consider a three year celebration as a highly likely event. So, I want to thank not just friends and family for accompanying me on this journey, but also express huge gratitude to all the haematology, respiratory and other staff who have helped to keep me alive, mobile and well.