Bridget and Gill yes none of the men need to read this
This hair thing is odd, before my diagnosis in feb I thought my aches and pains and tiredness were due to a very busy job and life and the dreaded menopause ( I was 56) . My eyebrows had started to grow longer and more wild and need firm trimming, leg hair more luxuriant, head hair finer and…[Read more]

I have the same, what feels like lumps along the line of the vein they used, I was told they take a long time to get better. I'm 2 weeks behind you at 5 weeks post sct.
Helen

Aww Bridget thanks very much, I know what you mean about being too untidy for a wig, I think that is my problem too, I'm normally very lazy with my hair and in fact when my boss asked me when I'd be back at work I had to reply, 'only when I've got my hair back' then had to explain that I'd be the person who was waving her arms around and suddenly…[Read more]

Hi all,
I haven't been on the site for a while as waiting for my SCT which took place on 1 September and out of hospital on 15th September which I was pretty pleased about and I seem to have got off lightly compared to some people. Mouth relatively ok, mild diarrhea and sickness and nausea. I was expecting to have no appetite but after a couple…[Read more]

Debs That is an impressive amount of fundraising, well done. I'm going to have to keep the wig on then! It was a bit un nerving yesterday when I went out in the wind and I was trying not to hold on to it and terrified it would blow away.
Bit soul destroying for you if sister thought you'd shaved head again.
I'm much better this week thought it…[Read more]

Funny how it's so different for everyone my mouth was ok, very dry and my lips constantly peeling but no ulcers but the gut problems are still bothersome though gradually settling
H

Min I love that you share this with us, and that Peter clearly loved you so much, I love that you spent a little time with me when I felt so low,
And I hate that this illness makes us be so horrible to the people we love most, I'd have done anything to have spared my family from taking this journey with me
And I love that my beautiful daughter…[Read more]

Hi I was on revlimid for 4 cycles and the tiredness was terrific. I kept working and sometimes could not come home as I felt to exhausted to drive, ended up having to get lifts from people. Light headedness and trembling muscles so I couldn't do anything til I'd had a sleep happened on some days but I couldn't predict which would be my worst days,…[Read more]

Debs are you wearing anything on your head? My problem is that I haven't told a lot of people what is happening to me so I feel obliged to maintain the pretence, my daughter chose my wig so she likes it and my 2 are much older than yours and don't seem bothered either way. Did you have your sct at the end of July? We will have a hair growing…[Read more]

Hi Elizabeth thanks for this I have no sign of new hair yet, have left the old sparse hair and was thinking I'd wait until some new hair starts to grow then get the hairdresser to sort it out. in the meantime I have wig which I think looks wrong but the family think it's a good match looks too neat to me but hey ho got to put up with it
Helen

Hi Ivan
As I understand it, paraproteins are released by the myeloma cancer cells and are what are known as 'marker' cells, they only occur when there is something going wrong and are specific to this type of condition. So 0 is the best number to have. The level for treatment seems to depend on the overall condition of each individual, this is…[Read more]

Ha ha what was it like before? There is no photo of me because I need my daughter to load stuff onto this IPad as I am so technically incompetent
Helen

Ha ha Tom it's the comb over effect that's so weird and the fact that you have to be careful not to have the shower too hot or you burn your head!
Helen

Hi All thanks very much, it's getting better every day and Debs, you seem to be experiencing the same, I have 2 goodish days then one awful one, even walking upstairs is an effort.
The hair situation is grim, I've what I can only desrcibe as a 'Mo Mowlam' at the minute, all the wrong length, colour and I hate the wig and the scarves and it's…[Read more]

Dear Tom, Amelie and David, thank you for your good wishes it's a tough road to take and it is nice to know where there is support and advice whe you need it.

Min, I was so upset to hear from the nurses about Peter, I have thought long about you too. I have made my comments to the powers that be, but am not optimistic. Perhaps when I am a bit…[Read more]

Dear Min
Thinking of you and your family today
Love Helen

Dear Min
This is truly awful, I know from our very brief encounter just how much you and you family were praying for Peter to pull through this. There are too few words to express how we feel.

' that fragile cup in which our dreams are held, is cracked and all has flowed away'

If you feel like keeping in touch please do, I had hoped for…[Read more]

Hi min
I'm out back Friday and Sunday too tired to do anything now
Helen

Sally what a predicament- you need to ask all the questions, take notes or record clinic conversations to find out what is the plan, your mum will presumably continue to do her own thing and you dad probably won't want to let go either and normal routine, however odd might be best only time will tell, perhaps you could speak to a MH nurse via your…[Read more]