[HelenParticipant]

Hello Ted
It is nice to see you, I think your surgeon and haematologist need to get their heads together and plan what is the best pathway for you. See if your clinical nurse specialist can fix it. It may be that if your immune cell numbers are still normal there may be no trouble doing surgery and if the surgery is not urgent there may be no need for it. So its a balance of risks and you get to choose after they weigh the risks. You need to ask for the main men to get together and don't get fobbed off til you have a satisfactory answer.
Love Helen

[HelenParticipant]

Hello Jet
Keith and I each did a spot at last years Newcastle info day. I found it very scary. Keith had his second transplant a week before i had my first, so we each talked about the run up to diagnosis/relapse. His was a seemingly effortless talk and he talked about his involvement with the PEER group too. I confess to copious notes and I did use some slides to keep me on track which was a help to me and I hope amused the audience. Do remember to have your notes on small cards so that there is no rustling by the microphone! I didn't and apparently there was much crackling.
Good luck with yours
Helen

[HelenParticipant]

Well how's he doing then? Did they win?
Love Helen

[HelenParticipant]

Hi Babs
Mine came back very curly and much thicker but very dull, it stayed like that for about 6 months then it went straight, much straighter than before, so I dyed it blonde and wear it short and spiked. It is now very high maintenance, takes ages to do.
Love Helen

[HelenParticipant]

Hello Helen
Good name! I kept our cat at a distance for about 6 months, he was fed in the garage and I never touched him or his food dishes nor was he allowed to sit on the sofa I sat on- which we had cleaned before transplant- he still doesn't sit beside me very often, I think he was traumatised by the experience! He too is 13. I've had lots of infections but none caused by the cat. Just keep door knobs, taps, cupboard handles and switches well cleaned and everyone scrupulous with their hand washing, as well as clean towels and bedding etc – should be ok. Good luck with the next few days.
Love Helen

[HelenParticipant]

Well Dai
If its working .. keep at it is all I can say, this teak you are wearing will no doubt be your wooden leg? I hope tomorrow's session goes ok.
Love Helen

[HelenParticipant]

No it's normal I think…. The stem cell transplant is the endpoint…. It's what you have been looking and working towards for such a long time, and it's still going to give the best chance for long remission, so it's very important. I remember being quite excited about the cells going back, which is also weird. Though without them I'd have been in a parlous situation!! So maybe I was just excited to see them arrive and go in without any trouble! The anticlimax is afterwards ….. when you still feel rotten and they turn round and say ' congratulations you are in complete remission' that felt very very odd.
What time are you back tomorrow?
Love Helen

[HelenParticipant]

Hi Jean
How was today? Did it happen? I'm off to Lanzarote – to paint I hope, while husband goes walking, we go in 12 days. Not that I'm counting you understand!
I'm pretty good at the minute, thanks, less tired and …….no cough!!!!!!!! Finally! After 6 months it is gone.
Love Helen

[HelenParticipant]

Hi Jill
I've been on Revlimid now for nearly 2 years all told, each cycle makes me gradually constipated then it reverses and gives me terrible diarrhoea so I now try to control it by having lots of fibre for the first 2 weeks of the cycle, then back pedal a bit in the last week , but it doesn't always work! i get muscle pain and tiredness with it too.
Dehydration shouldn't be much of a problem if mum is managing the 3 litres a day as a routine.
Love Helen

[HelenParticipant]

Dear jean
Here's hoping all goes to plan tomorrow, keep in touch.
Love to Frank (and you)
Helen

[HelenParticipant]

Tom you are sooooooo kind
H

[HelenParticipant]

He he
nice to know she treats you 'normal'
Love Helen

[HelenParticipant]

Hi Eve, Tom and Babs
I'm getting as many holidays as possible sorted, trying not to be fedup, though that is hard. I'm not a depressed sort of person but its a close thing now and again! My optimism is suffering!!
I'm not in line for more treatment any time soon I think, though it was mentioned then decided against, I suppose I'll find out in a few days, see what the next test shows.
The thing with infection Eve, you might be right, but as you know, I've had everything going since I was diagnosed….. Even when I was in complete remission and all my blood results were normal. It just shows how cruelly unpredictable myeloma is.
Anyway, we just wait and see – in the meantime, thanks for being there.
Love Helen

[HelenParticipant]

Dear Keith
It's horrible having all these infections one after the other, no resistance is such a pig. I'm wishing you much strength and fortitude, when's the BMB going to happen?
Love Helen

[HelenParticipant]

Oh jean
Does this mean frank gets home for the weekend?
Love Helen

[Author]

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