Hi there Ali et Al
Well, as you know I've been there got t shirt etc.

San ( weather fab in Cornwall, it's always like that when I go there:-)) and Jill, I think Ali is right that in frontline therapy it is different to maintenance, but do check when you go. Your mums would have thalidomide (which is an earlier version of Revlimid and can be…[Read more]

Dear Ellen
I do hope you will convey my feeling of great sadness to Sue, I met Keith at the Newcastle info day last year, when I was at a very vulnerable point. He was so very encouraging, understanding and thoughtful. He will be missed greatly by this community.
Love Helen

Hi Dai
Hope the gcsf continues to lift your neuts and mood. Good luck next week
Love Helen

Hi Pat
I think you just have to do what is easiest and best for you, like Eve says ' no one ever regrets leaving work' I'm still plugging away at it but I'm very lucky, though not sure for how much longer. After I start the velcade I will see how I feel and maybe make the decision.
I hired a window cleaner today, and am seeing a cleaning lady…[Read more]

Gordon Bennett !! Wendy, you must have been really up and down, what a horrible few days for you. I'm glad you have plateaued again. Stay there for as long as possible please. I don't know why they decided to treat now! I was in same cart as you until last week, then out of the blue really, I expected next Revlimid prescription but got 4 more…[Read more]

Dear San, Pat and Elaine
Thank you all for your advice, I went to the hairdresser today, they are so lovely. I'm now sporting much shorter cut, have a bottle of stuff to apply to scalp before treatment starts and an appointment for 5 weeks time to see what's happening. Today it was a bit like yours Elaine, with the bleach stuff touched on the…[Read more]

Hello Liz
Well done you, like Etta I drank lots, walked round the plane every hour I was awake, watched all those films I never got round to and slept as I could. I didn't eat much. I took a course of antibiotics and a thermometer and took my temp every day just to be sure. My consultant also gave me a course of acyclovir as he thought shingles…[Read more]

Dear Vicki
I shall enquire from hairdresser on Wednesday when next attend, before holiday on Friday ( Cornwall ) .
I was just throwing the question out there as I'm a novice when it comes to hair bleach, having always had just rinsed or streaked dark hair. The shopping expeditions with the daughter are dangerous these days as she inevitably…[Read more]

Dear Scott
I'm hoping you get good results from SCT, will keep my fingers crossed that all goes really well for you.
Love Helen

Dear Jan
They never become less worry, even now I wonder if I should just tell him, but since he insisted on going off to uni 4 weeks after my SCT, as a mature? Student ( he had 3 gap years!). He says he told his tutors but is such an independent creature, I have to just let him go. He knows that my numbers are rising and what it means and he…[Read more]

Dear Jean
Congratulations to Frank, every birthday is a milestone, I shall raise a glass to him. I hope you were slightly tipsy too?
Love Helen

Hi Eve don't do face book….long story
Love Helen

Thanks Maureen, that's very kind:-) love Helen

Dear Dai and Eve
You are both so right, since my relapse I have felt that the elephant has had to be addressed directly, as I feel it walks into the room with me. If people do not say hello to it it and ask it how it is, gets bigger and bigger until I find it sitting on my chest and I have to talk about its feelings and deflate it a bit. What…[Read more]

Dear Eva
Thanks very much for this, it is only by you people ahead of us that we discover the little tips and wrinkles which can alleviate worry and discomfort. I'm very grateful to you
Love Helen

Dear Tom
I do hope you are right, I'm really not relishing starting over on this palaver again, but if it knocks it back then i dont really have an option. Are you fattening yourself up before stem cell collection? I do hope so, it is quite a rigorous procedure.
Emma just use the time with your mum while she is well, it is hard but you have time…[Read more]

Hello Elizabeth
Are you ok?
Love Helen

Hello Mavis
I went to New Zealand and was covered when in remission. That was with world first.
Love Helen

Dear David and Jo and Tom
Am now watching your Velcade journeys with more than just passing interest! It's marvellous how soon one manages to readjust to changing circumstances with this disease. I'm hoping you all do very well on it. Note to self ' don't rub eyes''
Still watching from the sidelines Helen

Dear Emma, thank you, I hoping the same, you just get your optimism back and you get smacked down again. I hope your mum is continuing to improve, is she out of hospital yet?
And Ali Jean and Vikki I don't know why they decided to treat straight away, it seems to have been a group decision, weird non typical cells + myeloma cells and no pp and…[Read more]