The last couple of weeks have been incredibly frustrating, as I managed to pick up a cold and just as that was clearing up my stomach started to play up. Initially with the stomach, the consulting team and I weren’t sure if i was suffering from a bug or GvHD however after just over a week it cleared up, therefore we think it was a bug. I have to confess to being relieved it was a bug as they booked a laparotomy just in case and I wasn’t looking forward to yet another procedure. Now that I am over the worst of the cold and stomach bug, I can feel my strength coming back to me and the fatigue isn’t as overwhelming as it was a few weeks ago.
I don’t really have much to report regards what I’ve been up to, as I’ve most sat on the sofa and watching and endless amount of trash due to being unwell. I even had to cancel my plans to spend Easter with my family as I simply wasn’t well enough to travel and I doubt I would have been much company. Aster and Khan kept me company, Aster wasn’t too impressed with the reduction in walks and mad this known by being extremely mischievous.
Every week I attend the hospital for bloods and then revisit for an appointment with the consultant to review my results and discuss any issues etc. For the first time in a while I bumped into a few patients and as we all had a lengthy wait for our consultations we had a good natter. I walked into the hospital that morning feeling rather blue but strolled out with a smile, there is no better therapy than to get have a good moan with fellow patients. No offense to friends and family, the simple fact is people can only sympathise with the issues a patient faces, where as other patients can truly empathise with all the problems. Also sitting in the waiting room is a dose of reality and shakes a person out of their moments of self pity because there is always someone worse off.
I am still on large doses of ciclosporine to suppress my immune system and help to reduce the likelihood of GvHD. The current plan is that around Day 100 depending on how I am, then, I will start to wean off the drug. By coming off the drug there is a high risk of GvHD, however in theory having passed the 100 Day mark the GvHD should be less acute. It’s around this period that I can commence having childhood and other essential vaccines. Although there is a long way to go, it does feel as if there is finally a light at the end of the tunnel now.
My chimerism test at Day 30 couldn’t have come back with a better result, 95% donor. My blood group hasn’t altered as yet but that is because haemoglobin lasts up to three months, therefore Rachel haemoglobin is still pumping around my body but it won’t be long before I change blood group. It’s crazy to think that my blood DNA is male and my blood group will be different, I would never have believed a couple of years ago that I’d have developed AML and undergone all that I have as a consequence. I saw a photo today that was taken two years ago when I visited Madrid with a friend, when I looked at the photo of me sitting outside a café (with a full head of hair) and it felt as if the photo was from another life. The last twelve months have literally shifted my life and set me on a new course physically and mentally.
£3880 is how much i have raised for Anthony Nolan on my JustGiving page, this is three times what I expected to raise. I’m so pleased and in total the walking group have so far raised £4926.24. I know a few people still have plans to raise more money, consequently it’s looking as if we could raise £6000 which would be awesome. To know that we are helping Anthony Nolan continue their wonderful work, all be in it a drop in the ocean of that money they require, is enormously rewarding. On a less thrilling note we don’t have much time to train and having been ill, I am way behind where I’d like to be. We have 54 days for we embark on our challenge. I am keeping my fingers crossed that I can get out and about for another training walk this weekend.
Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at: http://www.justgiving.com/Rachel-Jackson13