[HelenParticipant]

Hi Eve
Sadly it is me who is no longer in complete remission, only low levels so far so I might get a year or more before I need more treatment, we just have to wait and see now. I hate this watch and wait, so uncertain!!!
Love Helen

[HelenParticipant]

Hi Vikki
Hurrah ! Just get out and do all the things you want to now.
Love Helen

[HelenParticipant]

Dear Helen
I'm a lot further along the work road than you so the pension situation is very different, but I'm back to work full time, I could retire on ill health grounds but this would mean reducing our income – as i had time off when the children were little my pension will not be great and as my husband is still working, I'm going to work until I can't. I too don't qualify for any benefits as I'm only tired and that doesn't count. If you do have to finish work on ill health grounds you will get employment support allowance and depending on mobility, from April the new personal independence provision. I thought all mortgages had an insurance element so that's worth checking too. I do think its worth finding out as much as possible about what is out there, especially as we have no idea which direction the disease takes us.
Love Helen

[HelenParticipant]

Dear Sue
How terribly sad a time for you all, but you have given Michael such a precious gift in his last months – all that love and care.
Love Helen

[HelenParticipant]

Hi David
Hope your MRI shows nothing untoward.

And yes Eve and Jean I'm back from Barcelona, Gaudi and Picasso'd out but was much warmer there than here. Lanzarote next month for more sun, and still desperately trying to get my head round the increased light chains, can't tell you how devastated that result last week has felt. It was exactly 18 months from SCT, I thought and still feel so well.
Love Helen

[HelenParticipant]

Dear Tom
Brilliant news keep it like that:-)
Love Helen

[HelenParticipant]

Hi Maureen
Phone the hospital, could be sub clinical infection, or anything especially if temperature isnormal. Tell them about the confusion, can't harm and will put your mind at rest.
Love Helen

[HelenParticipant]

Hi Ali and Suzy
I swore by Aveno and the itch seems a common problem.
Love Helen

[HelenParticipant]

Thanks Tom and Wendy
I will do my best visiting all the high spots – tops of towers etc! Never been before, he did say it could be some months before I might need more treatment. Ironically the cough seems to finally be going.
Love Helen

[HelenParticipant]

Dear Wendy
I'm following you now! as of today my lambda light chains have jumped to 58, a gradual climb over several months to 26, then doubled!
No treatment changes so far, watch and wait – but it's still so disappointing. I'm off to Barcelona on Friday. Good luck for the 15th
Love Helen

[HelenParticipant]

Dear Emma
I'd speak to your mums GP and explain the situation, and speak to a McMillan advisor as soon as possible, as Tom says she can't be sent home unless they are confident she can manage. So lots of assessment to be requested, home visit by both physio and occupational therapist – this will take time – might give more confidence for both of you. Mums hip will be at the 'sticky' stage now so becoming less painful, but still fragile and falls are not to be recommended.
Keep in touch
Love Helen

[HelenParticipant]

Dear Jean, Pat and Dai
How lovely for all of you, they all look so lovely, I don't have any grandchildren but they must give you so much pleasure.
Love Helen

[HelenParticipant]

Hi Jenny
Sorry to hear you've not been too well, I had cyclophos and Revlimid with dex as my induction treatment and it worked very effectively for me, I did feel very rough with it though, not so bad with just the Revlimid now, though it does make me quite tired. Are you heading for SCT?
Love Helen

[HelenParticipant]

Well!….no gas and air this far north! Southern softies!! Hmmm… We still have snow and now rain so hope it takes the snow away.
Vikki, I am wimpishly tired and was even more so for first 6 months after SCT. I've gone from superwoman to frail, and am just about resigned to it now. I know I've had infection after infection for the last year, but can't live in a bubble. Don't know what the answer is but tired seems to be part of the scenery for some of us.
Love Helen (still coughing)

[HelenParticipant]

Hi Phil
Well done on your second anniversary, keep it up, bad luck with the bugs, I sympathise…… I'm still coughing, …… It's got to be just another bug too.
Love Helen

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