[MariParticipant]

Hi everyone,

It's been a bad year and I have not been posting much. My mum used to say if you can't think of anything nice to say then don't say anything!

I am sorry that I have not been very supportive of all of you going through this particular journey.

Stephen has now been diagnosed with cardiac amyloidosis and already has heart failure. This has made a huge difference to his quality of life and some days he cannot even get out of bed. He gets very breathless and he cannot walk anywhere. His beloved bike has been consigned to the shed and his swimming trunks are away in the drawer, probably forever.

He is on revilimid, a very low dose and without dex, as both can affect the heart. This will hopefully slow the progress of both myeloma and amyloidosis but is unlikely to improve the heart function.

His prognosis and therefore, his life expectancy are now pretty bleak. We are taking each day at a time and trying to enjoy the good days as much as possible

[dickbParticipant]

So sorry to hear how bad things are and I understand that there is not a lot that we can say or do, the only thing is that every day is a bonus. It's at times like these that an inner strength manifests itself. I am sure there are a lot on this site and elsewhere that will be thinking of you both.

[jmsmythParticipant]

Mari I am so sorry to hear that things are so bad for Stephen. There isn't anything I can say that will ease what you are going through, only that you both will be in my thoughts and prayers.

Try and take care of yourself. Stephen has you by his side and as you say enjoy the good days

Loce Jean x

[DaiCroParticipant]

Hi Mari,

I am so sorry to hear your news of Stephen's poor health. I am glad that his medics are still persevering with treatment be it ever so small doses of Revlimid and I hope it keeps the prognosis at bay for as long as you both need.

Much love

Dai.

[AliParticipant]

Hi Mari

I've often wondered how you are both doing. I'm so sorry that you find yourselves in this position.
I'm sending you lots of hugs and srength.

Love Ali x

[janwParticipant]

Hi Mari

I'm really sorry to read about Stephen's poor health. You both must be so worried and concerned about whether his current treatment will continue to help with the myeloma. Feeling breathless and not being able to walk anywhere is frightening and concerning. My son has experienced some very bad asthma attacks over the last year due to aggravation from mould spores in his Nottingham rented student accommodation. He couldn't walk or move for days after the attacks and even now, the pollen and mould in the garden can tighten his chest. It's definitely not a pleasant experience for anyone to suffer. I hope Stephen's body might still be recovering from his second SCT and perhaps over the coming months his symptoms might improve just a little? Fingers crossed there are a few more good day for both of you.
Love Jan x

[EvaParticipant]

Dear Mari,
I'm very sorry for what you and Stephen are experiencing. I hope your love for each other will sustain you,
Eva

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