'We can't tell you, you are all different' became such a standard response that I gave up asking what came next!
My cover is always to appear upbeat but I have found this not actually negative but no better than neutral approach to any difficulties or side effects added to my problems rather than helping.
I was diagnosed in June 2008, given all the info by my consultant, of whom I will hear no ill, with a support nurse in attrendance and sent home to start taking the pills the next day. Mercifully I had a cousin with me to help with the listening, as it is far more than one person can possibly take in at one bite, and take me home afterwards and visit every week with a 2 hour journey each way. Next day came and I took the steroids and all the support pills and was sitting looking at the Cyclophosphamides when my next door neighbour popped in to see how I was doing - 'Just wondering if I really want to poison myself' I told her. Well I did of course and the rest is history as they say but don't they make you go looking for professional, knowledgeable support. No indication of how one might respond, 'You're all different' started here. Never a squeak from the Support Nurse just surprise when I asked her about MacMillan Nurses, who turned out to be Hospice nurses, the first of which told me it was a bad time to be on my own and almost asked if I was sure I couldn't conjure a partner up from somewhere, well I probably exagerate but that was how it came across. Fortunately for me she had a jobshare partner who is delightful and truly supportive but it took a couple of months to find her. Merciffuly I live in a village which almost literally wrapped itself round me doing everything but cut my toenails and that only because I didn't ask!
I'm not going to list my side effects, maybe they were different maybe they weren't but they are in the past and I am in remission after five months of chemo. The one thing that still bugs me is the back pain, not as bad as it was but still there and needing constant analgesia and inhibiting my recovery.
I do think those of you who have gone forward to Stem cell Transplant are very brave, I have yet to be convinced - as I have been told it could extend my life by 18 months and at least 6 of those will be pretty unpleasant I feel inclined to take my chances on the treatment to date, we hear of people living 10-12 years on what is now well beyond its' useby treatment. After all research is ongoing and A P McCoy has just ridden his 3000th winner and donated £1,000 to Leukemia reserch and we get some spin off from that I understand.
What a miserable diatribe from one who claims to be upbeat but then you are strangers out there who can't actually see me. Good luck to you all, 2009 has to be an improvement on 2008 for those of us diagnoised then.
Ursula
