[sessakellyParticipant]

Thank you Peter for your reply. I have such admiration for everyone having to personally deal with cancer, I’m just a wife and feel like a spectator. Even in remission its there, but you’ve helped put my mind at rest until Stewart gets new results. You didn’t have to do this for me, so I’m really very grateful. X

[sessakellyParticipant]

Hi Emma,
Sorry to hear your story. Unfortunately I have some experience of less than sympathetic employers. I was diagnosed in September 2012. Usual CDT before stem cell transplant the following April. Made redundant on my return to work in June having worked from hospital during the STC and having taken no time off during the initial treatment phase. I worked for a private sector shop fitting company, Morris and Spottiswood. I took legal advice but essentially the employer can carefully phrase their wording of any redundancy and are effectively unchallengeable. I was 46 at the time. At least I got some quality time with my daughter who was born 7 days after my diagnosis. I fear that, unless you have a caring employer, it will be a hard battle to change their position.

[sessakellyParticipant]

Thanks ladies I really appreciate your advice. I will call the nurses tomorrow and maybe try to worry less. I’m probably driving Stewart crazy!
So grateful to you both

Vanessa

[sessakellyParticipant]

Thankfully we have legislation like this. However private sector employers are generally very canny and do not make you redundant on basis of your illness., making it very hard to make a case. In fact cases like these are like hens teeth.

[sessakellyParticipant]

Thankfully we have legislation like this. However private sector employers are generally very canny and do not make you redundant on basis of your illness., making it very hard to make a case. In fact cases like these are like hens teeth.

[sessakellyParticipant]

Is curcumin beneficial only for those with smouldering myeloma ? Can those with active myeloma benefit also? How much should one consume daily? This is very interesting ..

[sessakellyParticipant]

I'm lost for words. What you wrote is exactly how I'm feeling. I need to add though that I don't mind being there for Stewart, I absolutely love and adore him and I always will. I'm sure your wife feels likewise.

[sessakellyParticipant]

Thank you Dai, I hope to follow your story for a long time also. I send you my best hopes and wishes.

[sessakellyParticipant]

Andy,

Thank you for your reality check. Its not pessimistic , more realistic, some thing I struggle with. I have a vivid imagination and overreaching expectations. When I read about ground breaking viral therapy in Ottawa recently I grasped onto this for dear life and didn't realise that it takes so long to come to fruition.
Then, when Stewart reacted as he did, it sank in that it may not work, nor may it happen on time and this just shook my world.
The fact that Stewart , the person with MM can handle this mentally makes me think hes so strong. You too sound like a very strong person, I admire you.
I wish I could be like you both, I resolve to be. I need to be for his sake and for the sake of our little girl. I need to live for today

[sessakellyParticipant]

Megan,
Stewart sounds like Phil, he no longer looks at the forums either. But unfortunately the SCT doesn't appear to have reduced his pp levels. Regardless , you're right its the making of memories thats important now. I have to stop looking for miracles and live for today. I just struggle with this but am trying.

[sessakellyParticipant]

DickB

Your message was profoundly moving, particularly when you spoke about your daughter. I know Stewart feels exactly as you do, I try to reassure him that he should never ever feel guilty. I hope the same for you. None of this is your fault, its no ones fault, its just fate.
He's a brilliant dad, she lights up when he comes into the room and I'm taking videos daily so that she has lots of evidence that he adores her. I also have a very good long term memory.
The awkward discussions have yet to happen between Stewart and I regarding Elsie's upbringing, awkward because I dread these moments, its all too real. But it could well be years down the line – I'm hoping.
You sound like a very thoughtful person, I'm sure your wife feels very lucky. I feel the same way about Stewart, I'd do anything for him,so rest assured Id say the same for your partner.
I could ramble all day,sorry.
Thank you for your response, it stopped me from wallowing and made me look at he bigger picture.

[sessakellyParticipant]

Eve, I will try to take your words of wisdom and follow them. Thank you so much. Vanessa

[sessakellyParticipant]

Sounds strange I know but your video news made me both really hopeful and anxious at the same time. I didn't know much about vaccine therapy before, now I cant help but hope that there's at least a real chance of a cure imminently.
But what re the chances of any proposed trials here do you think?
Thank you Tom for giving me a glimmer of hope. Thank you.

[sessakellyParticipant]

Ro

Thanks to you all for replying. Don't know what else to say, I'm spent, I really am. We placed all our faith and trust in this man and it appears he made a mistake. Just to confirm, Stewart was on the trial he plateaued and the consultant went straight to SCT he didn't offer velcade as per required in trial because he hadn't understood he had too. Therefore Stewart is now removed from trial and can not be randomised for maintenance.

It's very worrying, it's all a bloody lottery.
I'm heart broken, and so full of "what if's" . I worry for my wonderful husband that there are other options out there and we don't know of them. Instead we sit, waiting, waiting and just hoping it will stay at around 15.

Is this supposed to be the only treatment out there….I want a long time with Stewart. I know we all feel the same.

Rant over, my baby girl has woken up so I'd best go.

Thanks again

[sessakellyParticipant]

Vicks and Ellen, I really appreciate your replies. So much to consider. In Stewarts case he's now got bilateral Pe's and osteonecrosis of the jaw. He's been in hospital five times now over the course of his CDT and we're both so anxious about his SCT because if there's a complication to get Stewart seems to get it!!
He's only 45 and I just can't come to terms with him being so ill.

It's the reason why I'm on this forum daily just searching …searching.

Thanks again

Vanessa

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