[HelenParticipant]

Dear Jean
I can't imagine losing one of my sisters (I have 3) we are all quite close and they have our shared childhood memory. I'm glad the funeral went well, nice to have a minister with the personal connection.
Take care
Helen

[HelenParticipant]

Oh Mavis I am sorry, I have been wondering what had happened to you and your appointments. Hope they manage to get you on your feet soon and the CDT does the trick.
Helen

[HelenParticipant]

Hi Dai
Will keep my fingers crossed that blood levels improve. I'm on to the 5th cycle now, so far so good:-)
Love Helen

[HelenParticipant]

Hi Terry
My get up and go got up and left about 5 years ago and is only just coming back lol!
I forgot to say that I have had a hot water bottle practically welded to my back until about 3 days ago and have worn socks and many jumpers constantly in bed I was so cold. And as David says when you get cold everything seems worse.
As for Macmillan …. No idea … Ask them, I've not tackled anything like that yet except ESA and that was only when work sent me the form.
Take care of yourself
Helen

[HelenParticipant]

Hi eve I'm with Paul on this one, ring your specialist nurse and ask for all the screening tests to be done on one day, it should be possible.
Up here we don't have the cyclophos priming, just the heavy duty gcsf then harvest, when that is done ok the transplant date is booked about 3 weeks later so that you can recover a bit before sct. Hope it goes well
Love Helen

[HelenParticipant]

Hello Kirsty
Not the nicest site to join but has the nicest people, especially when the going is getting tough. You are very young to have this disease thrust upon you but there are others your age and the under 50s have some other place where they communicate in a different language or something;-)
I've been struggling with the diagnosis and coming to terms with illness for the last 13 months or so, so you are not alone there.
Denial is normal- i had a copy of my bone marrow results in my handbag for 3 weeks after diagnosis which I had to keep reading to make sure it wasn't a dream ( hmmm nightmare…..:-/ ) anger is normal too and it's where I am most of the time, I feel so cheated by it.
Ask anything, there is usually someone who can answer your questions, build you up, or just talk or read your thoughts (..as long as you write them down we are not really mind readers:-) )
Tell us what stage you are at, have you started treatment, do you have family and friends behind you and are they coping, or are they as shell shocked as you.
Take care
Helen

[HelenParticipant]

Hi Andy
We'll keep our fingers crossed that the chemo gets the evil paraproteins and zaps them all!
Love Helen

[HelenParticipant]

Minus 8……Brrrrr that's cold, I'm enjoying a heat wave here In unseasonably sunny Newcastle, it is 23*at 5pm, I'm in shorts and a t shirt and factor 50. So much for the maxim never cast a clout until May is out.
Good luck with the trial ,keep us posted with how it goes, it's interesting to hear what goes on in other areas of the globe. I'm off to water the pots now that I'm feeling so much better
Love Helen 😀

[HelenParticipant]

Hi Terry
I was out by day14 and felt dreadful for weeks. I did as much as I could, slept, cooked, slept, went out, slept, saw people, slept, ate a bit, slept, got infection after infection, slept you can see the recurring theme here :-S

I'm now 7 months post SCT, still have some residual problems BUT for the last 10 days I'm more like myself again. Now I know I've taken longer than most to get here but I'm now improving a lot. Doing the garden, walking a lot and staying awake for about 13 hours a day, so I feel as though I've finally turned the corner, though I still need much more sleep than I did before.

I'm on revlimid maintenance so have always got a strange loss of taste and altered sensation in my tongue and round my mouth and my mouth remains very dry and borderline sore but in the scheme of things this is nothing to compare with how I felt a few months ago.
As Tom says, you just wake up one morning and you are aware that there is something different…….. You got better!:-D So here's hoping you do too8-)
Love Helen

[HelenParticipant]

Hi Eve
Good to see you enjoying a bit of time off at last even though it was cut short a bit. Hope you have a spell of plain sailing into the SCT
Love Helen

[HelenParticipant]

Dear Michelle
So so sorry to hear about Phill, he was too young to leave and you must be heartbroken. I wish you all the strength you and your children need in the days, weeks and times to come. Remember all the good things and talk about them to your children keep him live in your memories.
love Helen

[HelenParticipant]

Hi Debs
No I understand trying to distance yourself from mm, it's a bit invasive on the mind! And escaping from it as much as possible is probably a good idea. I'm ok, getting better, the pneumonia was a set back which I didn't expect but I'm good now. I'm also sporting a short' 'do' which I quite like, though I wouldn't have chosen it. Like you I'm told I suit it, I do hope they aren't lying! I must get a new photo on here.
I will go through the cupboard and fetch out all the weird unwanted presents! >:-) and send you a job lot. Do you have a 'receive by' date for your pre ball raffle?
Love Helen

[HelenParticipant]

Hi Dai
I could never work out what was doing what when I was on the rev/dex/cyclophos combo but now I'm on revlimid only, I have the running nose, especially at meal times, tingling mouth and trembling fingers, sudden fatigue and occasional headaches i think when I've done too much.
Being a girlie I can't comment about the hesitancy! Different physiology! I still get hot flushes though but being a girlie I put that down to menopause again.
this probably doesn't help:-|
Love Helen

[HelenParticipant]

Dear Nicola
How tremendously sad for you all, after so short a time. Remember he will be with you every time you think of him and how much he was loved. Chin up and live your life well in his memory.
Love Helen

[HelenParticipant]

Hi Debs
I'm delighted to hear you are doing well and take my hat off to you organising such a splendid event.
Where do we post stuff to if we want to send you raffle prizes?
And how is your hair doing? Shall you have a delightful coiffure in time for the event – very clever of you to pick the date for when you would have chic short hair.:-)
Love Helen

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