'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
FormerMember
How lovely to hear from you all. I can still see the bottom of Lori's saying she wasn't told about fractures, nor was I, when my first rib cracked as I turned over in bed there was so little medical response that I really did feel they should have warned me of the likelihood of it happening but when the next one went I didn't bother picking up the phone. Six vertebrae fractured in all, 2 have been treated with vertebraplasty with some success, in fact wonderfully painfree for 10 days over Christmas but back it came. Now I understand it is the Facet Joints that need treating, I mean - had any of you even heard of a facet joint before this? Unfortunately the snow stopped me getting to Oxford to have this treatment - 30 minute outpatient - last week but hopefully it won't be too long before they find me another window. The first thing they try here is to give the FJs a steroid and local aneasthetic injection which sometimes works for all time if not the nerves feeding the FJs can be treated to block their tiresome little memories, amazing really. That bit is between my shoulderblades, I think the lower back pain, in my case, could be muscular but who is going to tell me, I'm having some light massage which seems to help my general wellbeing and have been given some exercises but nothing really moves it for any length of time.
Mike - I do hope your SCT all goes well, they do seem to have the whole thing sussed even tho' it comes across to me as an Everest, which I think puzzles my lovely consultant somewhat. I too have lost 3.5 inches, in my heyday I revelled in arms up to my armpits at 5'11", I now find the actuality more than somewhat uncomfortable but am adjusting with time, no doubt air travel will still be cramping as my legs are as long as ever, I am going to give it a try at the end of March! Oh yes the Zomorph helps I've been on it since May but somewhat less now I'm glad to say, a TENS machine helps sometimes too. Just keep attacking the attacker inthehope it might one day succumb.
I come from an Island in scotland pop 4,000 which I was informed has a high incidence of myeloma- I have been trying to find out who these people are so far I have found 3 people who have had the stem cell translant they are aged between 55-65 years and 1 has been in remission for 10 years , 1 for 5 years and the last for 1 year all are not taking any medicine. I suspect there are others out there who haven't had such good responses but I have not found them yet.
I have been given 3-5 years as the norm for remission not 18 months but I was told that I would get at least 12- 18 months which was why they recomended the transplant .
I have just been for my pre stem cell collection chemo and back home with my daily hormone injections to induce stem cell growth. I go to the Beatson hospital in Glasgow for my collection next week.
Hi Margo, I'm curious as to why you guys seem to have a pocket of Myeloma on your Island! That is interesting don't you think? Good luck on your collection! Best, Lori
All sounds like good news. The life expectancy rates continue to lengthen and I think the Arran stats more or less equal the national average - although you should have the advantage in breathing fresher air than most!
The actual collection is no great shakes....just sitting in the chair for about four hours with needles in both arms, so you are a bit restricted with your movements and of course you can't leave the chair! Hopefully they'll get enough stem cells from one session (some people have to go back for a second sitting). Hope it all goes well.best wishes Mike
Today is Ash Wednesday, the start of lent, when we are supposed to give up something. I have just completed my SCT in Kings this evening and although I am feeling fine,clearly the giving up of eating as I have enjoyed it in the past will not be a problem - as the taste buds are faulty and I have little appetite anyway. But these are the only problems so far. Yes I have been warned about the sore mouth and diar(can't spell it)...the shits - but this passes
The haemato-oncology nurse at the hospital advises me to look upon this stage as consolidation of gains. After eight sessions of pill based chemo the paraproteins had disappeared on the test results and I reckoned that several weeks of disrupted lifestyle was probably worth the advantages that the procedure is likely to deliver.
The other thing to consider is that in two or three years time, (when I fully intend to be around) advances in research will probably have come up with better life extending drugs, if not a cure.
I know it is a difficult decision whether or not to go for the stem cell transplant and I hope the decision you make for yourself will be the right one for you...........................All the best Mike
PS Anyone got any info on average extra life expectancy after the SCT or is it a case of "we are all different!"
