Been away, had chest infection , got ready for Christmas………. Then become allergic to the wig!!!! Am now sporting 1 cm hair and very snazzy earrings.
Back from the carol service and wishing all of you a peaceful and happy Christmas
Helen

thats good news Ian and long may you continue to be disease free!

Re chromosomal abnormalities it doesnt appear to be the case that many people are told about these or tested for these. In fact I dont know how you are tested whether through blood tests or bone marrow tests.

I have been told there is a matched potential donor in Portugal. As…[Read more]

Hi all

I thought I would update you on my mini allo research and decision. I had decided to wait and see what sort of response I had to the auto transplant and if I had complete remission or very good partial remission would settle for that and hope for a nice long remission period. So I found out on Friday that my bone marrow was less than 5%…[Read more]

That sound very scary indeed, no mishaps please! When will you find out if it's working?
Love Helen

Hi Vicki
As Bridget says, no real time scale now, worse is between 4 and 14 days usually round day 6- 12 but varies, keep him at arms lenth so he gets no infection from anyone, ice is only vital when getting the melphalan, I can't bear the thought of an ice cube now, I had so many to help the mouth I sickened myself. I took the anti sickness…[Read more]

How is it going with you just now Bridget?
Love Helen

What a cutie he is.
I love christmas and am looking forward to putting up the tree. We have a huge family gathering just after Christmas for my dads birthday, so it is all very exciting
Helen

Dear Gina
How terribly sad for you all, but how lovely to know she was surrounded by such love and was able to see you on your big day.
Love Helen

Hello Vicki
I'm 3 months post sct and now getting well. All the above posts seem to have covered things, I'd also recommend lots of pj's/ pants, fragrant shower gel. I did nothing in hospital except sleep and listen to the radio occasionally, all manner of interesting drinks and soups were brought in by my friends and relatives, most of which I…[Read more]

Hi Debs
Can't really help here as I've only just restarted the Revlimid again and had so many aches and pains at diagnosis I'm not sure what caused what symptoms. However I've been warned that colds and coughs will linger and often cause more trouble than previously as immune system has been so battered, I'm to contact the hosp or get my GP to…[Read more]

Hi Eve
I laughed out loud when I read this! I was looking at my head last week and wondering if an eyebrow pencil would work to fill in the patchy bits…. Never gave boot polish a thought. Hair does stop growing, you have 'dormant' hair for about 6 months and then it falls out. That's why we have such patchy hair as we lose the growing hair…[Read more]

Hello Mavis
Far from wishing time away, I'm very grateful that I'm improving, it's just that catching sight of myself in mirrors and windows is a constant reminder of the situation, and I'm not a wig person, I always had fine, messy hair, now I look as though I just stepped out of the hairdressers. Maybe I should adopt the Sinead O'Connor look,…[Read more]

Hi Only Me
My count went to 0 at 6 days after stem cell return and stayed down for further 6 days before going to 0.4. I went home 2 days later. It's better at home.
And i could not bear to see my family when I was in hospital……. I was sooooo ill i knew it upset them to see me and that made me feel dreadful for putting them through it. I…[Read more]

Hi Bridget and Eve
Thank you for your kind replies, I'm making a concerted effort to keep positive.
I will be at 5 months post chemo by mid jan so should be ok for dye by then, and it will be about 2 cms long then, they think slow to start due to the severe effect of chemo, so hopefully it will be long enough to see a different colour!…[Read more]

Ha ha yes when I raise my eyebrows my whole scalp ripples! Not a good look! Hairdresser was quite shocked at how grey it was, lots of dye will be needed, not a lot else said-was greeted with big smiles by him and all his staff though and a big hug, so worth going if only for that.
Love Helen

Hi David
Congratulations on 49 years, and what a lovely place to celebrate, I love cornwall an am going to Rock next weekend to see some friends.
Your experience with your neck sounds horrific, when I was an orthopaedic ward sister back in the 80's i nursed several myeloma patients who had bone destruction, and it was always a shock to see how…[Read more]

Ha ha Tom yes a move to the darker side would be good! I went for an estimate on the hair today , the poor hairdresser said I should return in January and he'll see what he can do, i'm currently a suedehead!
I suspect he will become a richer hairdresser as a result.

That's amazing Jo, what a lovely surprise. Enjoy it.
Love Helen

Hi Elizabeth
Love the hat, hope Sam is ok now
Helen

I'm Helen and I'm in Newcastle, i was rejected from blood bank in october 2010 as I was anaemic and diagnosed myeloma in February 11, I've had the RCD arm of the myeloma xi trial, stem cell transplant in august and am in the revlimid maintenance arm from now, and I'm happy to say that I feel better now than I have for years, not back at work yet…[Read more]