[HelenParticipant]

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 could not eat but it is worth persisting. I found the whole experience dreadful and watching the family endure my predicament was painful in itself , but I'm good now and hopefully all is behind me for a long time. Hope all goes well for your dad. Applying lots of moisturising cream after showering seems to help reduce the itchy skin.
The numbers might be the cd 34 level which has to be high enough to ensure enough stem cells are circulating in the blood before they can collect them, if the number is low you have more growth factor until it is at the optimum level, I'd ask the nurse who did the aphoresis session.
Love Helen

[HelenParticipant]

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 prescribe antibiotics and to keep people with infection at arms length for the forseeable future. Hope you get over it soon.
Love Helen

[HelenParticipant]

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 only, I cut mine down to half an inch but my scalp was so shiney in between the sparse hairs I couldn't decide which was worse, no going back once you've shaved it though. I've kept my eyebrows but lost half my eyelashes.
Ah Tom if only I looked like Sinead, Do they offer the boys a nice little toupe or wig when they have chemo?
Love Helen

[HelenParticipant]

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, not brave enough yet though! 🙂
Helen

[HelenParticipant]

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 know it's not my fault but you still feel guilty:-S
Just hang on in there, keep everything crossed and pray as hard as you can, and let us know how she gets on:-) And when she goes home
Love Helen

[HelenParticipant]

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! Bridget, I quite agree to the growing old disgracefully, got to start now 🙂
And Eve I have used the aqueous cream and it is great though i don't put it in the bath as i'm terrified i slip. I will try polytar if it stops working.
Now I'm just getting to grips with the revlimid side effects again, oh joy!! ……. Not:-(
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 much damage they had lived with before they came in to hospital.
You seem to be doing well, it's the keeping going that is vital. We will look forward to the reports on the 50th celebrations.
Love Helen

[HelenParticipant]

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.

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 but probably soon. 😀

[HelenParticipant]

Hello Roisin
Welcome to the site. You have a problem and a half with pa in law and everything else. Will he talk to a Macmillan nurse? You could suggest it with an eye to future needs and general health rather than 'care', they are good at getting things sorted out.
Good luck with this
Love Helen

[HelenParticipant]

Well I now have 3 mm of hair and it seems darker as it grows, does this mean grey hair grows faster than coloured hair?
Have now been randomised to revlimid arm for maintenance on myeloma xi trial, so hoping for very few side effects.
Helen

[HelenParticipant]

Hi David
Mm is a very complex thing isn't it. I've probably had it for about 5 years but knew nothing about it except for a gradual decline in my haemoglobin. When blood bank expelled me last year for being anaemic I never thought it would be something as scary as this. Did you go on the sct route I know it must be on here somewhere but I can't remember.
Love Helen

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