[HelenParticipant]

Hi Dai
I asked about central lines early on, (you are going to think I'm a vacuous vain creature who ought to know better from all my posts about appearance and hair etc, but I was concerned about the position of these lines and neckline scarring afterwards, I want to return to as normal a life as possible and look as though nothing is wrong with me, sadly scars speak volumes and restrict clothing choice, vain I know! )
Anyway as my veins are good they said they'd use a peripheral one and save the central line option for further down the road, I had intense hydration before the rapid infusion which was very painful and has continued to hurt ever since. They seemed to know what they were talking about so I just went along with it. 🙂
Helen

[HelenParticipant]

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 all armpit hair vanished! What was all that about!
After the sct my eyelashes, eyebrows and legs are unchanged, I will let you know what happens next, off to shave the legs now before turn into chimpanzee!
Helen

[HelenParticipant]

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

[HelenParticipant]

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 the wig would fly off and land on some unsuspecting student in our very large open plan office and I or they would be frightfully embarrassed. He thought I had a point!
Hope your pain has all settled now.

Wendy, I never shaved my legs before the sct thinking all hair would go but no such luck. Now I don't have the energy to do it. Saying that I'm much better since last Friday but the 'what now' feeling is normal, what now is getting better then living as much as possible around the mm, hang on in there as Tom says 'onwards and upwards'
Helen

[HelenParticipant]

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 was never going to improve but I'm good, mouth is nearly normal at last and gut is settling down too, hurrah!
Helen

[HelenParticipant]

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

[HelenParticipant]

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 is on her way to do the Great North Run this morning and has raised more than £1000 in sponsorship for Leukaemia, Lymphoma and Myeloma Research
Helen

[HelenParticipant]

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, there was no real pattern. The docs said I was probably doing too much and not to push myself as the drugs were so powerful
Helen

[HelenParticipant]

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 competition. I'm amazed at what you seem able to do, I feel too weary to do anything and just sit and look at housework! I'll know I'm better when I start gardening again.
Tom I'm really hope I grow no facial hair! But i was surprised that no leg hair fell out. I wonder why hair round your mouth did not regrow, did you have a very sore mouth after your sct?
Elizabeth has a fantastic mane of hair.
Helen

[HelenParticipant]

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

[HelenParticipant]

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 worked out by the staging system so if you have serious anaemia, or bone involvement or kidney damage or another raised protein (beta) you will fit either stage 1,2 or 3. I think treatment doesn't always start until you fit into group 2 or have 'end stage' damage, ie treatment is the only option to stop the disease progressing. I think that lots of people are in the 'watch and wait ' group because the treatment causes so much trouble for a lot of people.
There are people who do not have high paraprotein but will have high 'light chain' counts and even others who have no signs of either in their blood but only get diagnosed when they have bone or kidney problems. So, many different presentations and none very straight forward, hence the difficulty recognising it sometimes.
Does this make sense?
Anyway a drop from 17 to 6 is brilliant and if it stays down and keeps going down you are on the right track, well done keep going in this direction.
Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 still too hot for a hat! I had fine flat wavy hair before so heaven knows what will grow back, I must be getting better if I'm harping on about hair.
Helen

[HelenParticipant]

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 better I'll make a bigger fuss.
Helen

[Author]

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