Hi Belles and Bridget
I can't remember what day I had platelets I was keeping a diary until day 8 then things went down hill for me, but today I overdid it( cut down tree branches and up ladder mending shed roof for my mum and dad) after having flu and pneumonia vac this morning. I know I should know better but I felt soooooo well this morning!…[Read more]

Hi Bridget
Hope the sickness is settling for you, well done with the injections.
Helen

Hi Belles
High temp is quite common, I had temp of 40 off and on for 3 days, days 8-11, given ice and antibiotics, eventually settled. Seems to be part of the general horribleness of the whole thing, I hope it settles soon. I know how I felt and it can not have been easy for the people I love to have seen me like that. I felt quite tormented by…[Read more]

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…[Read more]

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

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…[Read more]

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

Hi Debs
That's a brilliant result
Helen

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

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

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

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

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

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…[Read more]

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…[Read more]

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

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

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

Hi Sarah and Henry
As you can see we are all different, i had a good stem cell collection, loads of cells but got lots of bone pain with it and it took a few weeks to feel fully well after it. I was working until that point though the RCD chemo made me very tired. I've been off sick since and seem to have had a rough ride with the SCT, developed…[Read more]