I’m weaning off the ciclosporine as ordered, I have approximately another week before I’m off the drug having been on it since August. Once I’m off the drug, there has to be a six week ‘ciclosporine free’ period before the next transplant can go ahead to ensure my bone marrow is back to Rachel, otherwise when I have the next transplant there could be ‘three people’ in my bones and you know what they say. ‘Twos company, threes a crowd!’ The chimerism taken mid-November is due back this week, talking to the consultant today she doubts the result will show much donor presence and the conversation focused on progressing with another transplant. I have four potential donors being assessed. Four!!!
The word I’d use to describe my current situation is, frustrating. Naturally, I’m disappointed the SCT failed but I accept medicine is a science of trial and error and combined with life being a roller coaster, I am not going to allow this setback to erode my confident and determination to make a full recovery. Knowing I will have to have another Hickman line and that my hair will fall out, along with the fact that the chemo will make me unwell, doesn’t exactly fill me with enthusiasm. Waiting for something you know will be thoroughly unpleasant to happen is an odd situation, it confirms my belief its best not to know what the future holds. I suppose it’s akin to a roller coaster train stopping at the very top of a ride, providing you with a clear view of what is in front of you, meanwhile you fretfully wait for the train to move.
This week I returned to work in a part time capacity, I propose to work two days a week up until I have to return to hospital. The money will be very welcome!!!! As well as the much needed pound notes, having a bit more of a routine to my week will be good distraction during this ‘waiting period’. Throughout my illness I’ve kept to a small social circle, all of whom have known about my cancer. I had to re-attend the company induction on Monday, during which one of the new starters asked me about my long term work plan. I was highly amused by the intensity and seriousness of the tone used to make the inquiry, in reality is a fair thing to discuss when starting a new job however I had to supress a wry smile. Upon diagnosis life was day by day, gradually I settled into the hospital routine and it was confirmed I was in remission. At this point I dared to look forward a month or two to my birthday. Currently I am looking to seven / eight weeks’ time when I have another transplant and until I go in for a transplant I will have a niggling worry that the leukaemia may make a comeback. To imagine my work life in five plus years, is inconceivable and now, to me personally, thinking that way seems a little absurd. Mixing with people who aren’t aware of my illness, who are not experiencing similar uncertainties is peculiar, I feel my perspective is vastly different to theirs; it appears to me that as a species we worry too much about the future, conforming to the norms of society, comparing ourselves to others etc. meanwhile walking around oblivious to the joy and opportunities each day offers us.
I have been very busy scheming how to raise more funds for Anthony Nolan. I’m pleased to report a recent raffle as well as an additional donation or two has increased the total raised so far to £1540. (that will fund registering 15 new donors) I have a cake sale planned, for next week and two Christmas cakes are out in offices being raffled. With a little push its possible the £2000 target will be achieved by Christmas. I’ve a few ideas for fundraising once I’m out of hospital so I’m contemplating what the new target should be, merely (!) another thousand or should I be a little more ambitious?
Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at: http://www.justgiving.com/Rachel-Jackson13