[HelenParticipant]

hi Helen
I'm 12 weeks now and feeling a lot better. Energy is beginning to come back though I flag quickly, I think I can do more than I can – then get grumpy when I'm tired, wonderful for those around me!:-) The first 6 weeks were awful and I have some lingering niggles which I hope will go in time like itchy skin, you need LOTs of moisturiser applied religiously, and I developed colitis which is subsiding too slowly for my liking but I'm able to see improvement week on week. I have also had a chest infection even though I kept everyone at arms length for a few weeks. At our hospital there were no special diets, foods or mask wearing and not any advice other than avoiding crowds in the first few days after leaving hosp. As jet says lots of ice when you first go in to stop the sore mouth as much as possible, baby wipes, pjs, pants and interesting things to drink, I could not read anything,in fact I still find reading a chore.
Hope this helps
Love Helen

[HelenParticipant]

Hi Helen
Best to check with the hosp what they will allow and if they say yes it will be at your own risk of loss or damage, it is personal so own bugs are ok usually, I was given an iPad for hosp!! It was a godsend, small and light weight and I am getting to know how to use it too!
Wish her well
Helen

[HelenParticipant]

Hi there Andy, Tom and Jo thank you for your suggestions, that moth eaten look is soooooo.. Unflattering! Jo I'm going to have to dye it, my mum at 84 has no grey hair so there is no choice! The question is when and what colour, so many choices!
Mavis the myeloma xi trial is in 2 main parts medication wise, the first is at the beginning of treatment,when you are randomised to have either revlimid or thalidomide as your induction therapy to reduce the myeloma cells as much as possible ( revlimid is the new hope for treating myeloma) with dexamethasone and cyclophosphamide. After a few months if your light chains or pps have dropped enough you either have sct or not.( if pps or light chains not dropping enough you change meds to velcade then sct or not) Then 3 months after the sct you are randomised again to revlimid as a maintenance drug or no treatment and we all wait and see what happens. The trial goes on for each person until relapse. I think Debs Jet and Carol are all on the revlimid maintenance now as part of the trial so it will be interesting to see how things progress. I find out next week which arm of the trial I will be in.
Helen

[HelenParticipant]

Hi Belles
Fingers crossed it was a simple faint that your mum had on top of the stress of the awful chemo and she continues to keep on track now, hard for her with a broken ankle as well, insult to injury.
Helen

[HelenParticipant]

Hi Debs
That's a brilliant result
Helen

[HelenParticipant]

Mmmmm very nice bag, and kitchen, is it Tom's bag?……..he he:-)
Helen

[HelenParticipant]

Hard luck Dai hope you can shake it off soon, must be miserable for you.
Helen

[HelenParticipant]

Dear Bridget
Not rambling, nice to know she's good, that's a lot of worry off your mind.
Eve I read and look things up at this time of night so that I don't wake at 4, that's when there seems to be no-one around and not even a car on the road, so it's very very quiet and I don't really like it! :-/
Helen

[HelenParticipant]

Hope it works, how is youngest daughter coping with her illness while you deal with yours?
Helen

[HelenParticipant]

Hi
What is it about this time of night? You get used to injecting others. Are you still feeling sick? I had some great stuff before the melphalan called Aprepitent it stopped me being sick on the first day, then the ondansetron worked too.
Helen

[HelenParticipant]

Hi Bridget aka 'the pincushion'
I'm a nurse, I confidently expected to give my own gcsf so away I went to be watched doing it, I wobbled right at the start , hit my finger with the needle before it finally made contact with my tummy and I was horrified at how painful it was! :-/ not proud of this:-( and put it all down to nerves. I never thought I'd be telling any one else either, so let's just keep that between ourselves:-)
Helen

[HelenParticipant]

Hi all
just a little bit of info about when I asked the question about blood results coming to the patient as well as the doc. I was informed that the results belong to the requesting doctor and their permission is needed for the patient to have them. This means that if you have an infection and go to your GP ( as I did on Monday) the bloods done the previous week in the hosp were unavailable for the GP as the system was down, had I had a copy myself I'd have been able to produce it.
Helen

[HelenParticipant]

Hi Dai
Good luck with the presentation, I'm very keen to know how you get on. I think eve's suggestion that each patient keeps their own results and is told exactly which sort of myeloma they have is important too.Helen

[HelenParticipant]

Debs
I have hair follicles! There is hope for hair.
Helen

[HelenParticipant]

Thanks Eve
I am certainly going to do all the things I can, as I recover from the transplant I am beginning to realise how much my life had shrunk in the last few years as I became more and more tired and unable to do or plan anything really, so hopefully I can make up for some lost time.
Helen

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