3.5% doesn’t sound much does it? Let me tell you under the right circumstances it can be ample to reduce a person to tears. Ever since my first chimerism test post my second transplant, my test results have hovered around the 95% – 98% and that has been a fantastic result which I’ve been more than happy with. My first transplant, the highest the donor recorded was 53% if memory serves me well. I look back at the time I was informed my first transplant had failed and I’m surprised at how ‘well’ I took the news, it’s as if I just rolled with the punch and carried on in true British ‘jolly hockey sticks’ fashion. When the treatment started for the second transplant, I realised I hadn’t quite rolled with the punch as well as I would have liked, as I was very fearful that the transplant might not work. I’m extremely pleased to report that the final 3.5% Rachel has been removed, my last chimerism test across the board came back as 100% donor. When I was given the information I was of course elated however it wasn’t until I sat in my car alone, that the true significance of the news hit me. I just burst into tears, then I laughed at myself or crying over such a small percentage. (Meanwhile, passers-by just thought I was a crazy lady) The truth of it is I feel they were tears of relief, after nearly two years of heartache, needles pain fear and stress, in 4 months it will be two years since I first when to the GP. It’s been a very long journey and even now I have oral GvHD, take a truck load of meds but the light at the end of the tunnel is definitely getting brighter.
Life in general is beginning to take a more normal shape, I’m working on average four days a week and physically I feel extremely well. Recently, I struck off another significant milestone in my post AML journey. I travelled outside the UK as part of a surprise visit to members of my family. My passport expired whilst I was ill. Back in August I applied for a new passport and then I had to contact a medical company to gain approval for an insurance policy. I only took insurance out for Europe as my consultant advised when she approved my plan to travel. Europe is the safest bet for the foreseeable future, at least until I’m twelve months post-transplant and / or GvHD free. I am even considering my long term options with regards buying house, I sold my property when I moved to the Cotswolds and rented as a ‘try before you buy’, I now feel that it is the area for me and feel confident to start making plans for a future. The development that I am now 100% helps me to manage my fear that the AML will return, where once I had cause to question if I’d be around for my birthday I now have confidence to start making long term plans.
Talking of birthdays, it won’t be long until my first birthday! I’ve put my thinking cap on what to do when celebrating your first birthday, I’m up for a portion of jelly and ice cream however that isn’t exactly pushing the boat out. I have decided to do a ‘first’ for my first birthday, which actually isn’t that easy as I’ve already skydived, abseiled, been on a track day etc. The one thing I have wanted to do for a long time is to get up close with Big Cats, so I have booked a Big Cat feeding experience on the anniversary day and asked friends to join me for lunch afterwards. I feel it’s very important to mark the occasion, possibly even more so than my original birthday. As the one year approaches and the news is good as to the success of the transplant, I’m now asking myself should I request to meet my donor when the second anniversary comes round. I have been torn on this issue since I had my first transplant, to me he is a hero and I’m slightly fearful that if I were to meet the gentleman in person he might not meet my hero status, we might not like each other….I’m sure between now and the time I can make the request I will change my mind a hundred times over.
Throughout my treatment I’ve had a huge feeling of guilt, guilt because I never donated blood, platelets, signed any register to be an organ or bone marrow donor. I received many bags of blood and platelets during my time in hospital and I’ve undergone two stem cell transplants. Signing up to be a regular donor isn’t hard, it’s just an inconvenience many of us in our day to day lives don’t think to do or in my case we are simply to chicken to face our fears. I am not able to donate now however I am able to give back and help in other ways. Not long ago Anthony Nolan interviewed me and posted the interview on their website. Last week, once again I was interviewed by Anthony Nolan, this time it was a video project which covered a range of issues relating to having a stem cell transplant. Parts of the interview were difficult, naturally with the camera rolling I wished to remain composed and on the whole I did manage to get my words out without turning into a complete wreck. I’m proud to be part of the project and keen to see the final results. If by my sharing the difficulties I faced I can help someone else going through a transplant, then I’ve gone some way to giving back.