[mhnevillParticipant]

Welcome Ali and Guy from me too. Have just picked up your post.

It is all such a shock at the beginning and most of us had never heard of MM before diagnosis, and as you say, all the jargon is mind blowing. I still ahven't got my head round it all.

However, I do commend this site and urge you to ask whatever you like, or say whatever you kife. People are so supportive.

In a way, you will probably both feel better once a treatment plan has been agreed and is underway.

All blessings to you both.

Mavis

[gina45Participant]

Welcome to the site,although not a nice place to be. The people on here are brilliant at giving support and advice. My mum has myeloma and has had it since 2009 she is 71. Its good to know there are people that understand and can help when advice is needed.
Gina x

[sallyParticipant]

Dear Everyone who has so kindly replied to me.

This has been a tough day. The news is not very good – Guy's myeloma can be and is being treated but his bone structure is in a bad way. He can move only one arm now and even this is becoming very painful. He will remain in hospital for some time.

I know we (me and the children) must keep all thoughts positive and we try so hard but we can see that Guy is – completely understandably – at an extremely low ebb. I expect he is still trying to fathom how and why this has happened to him. For a practical man being unable to move almost at all is his worst nightmare.

Yes, dark days. I also know that if we can keep him alive mentally this situation can improve.

It feels selfish to tell all my woes and not really respond to all of yours.

So, thank you all and I wish for better days for all of us.
Ali

[brochoParticipant]

Hi Ali sorry to hear Guy is having such a tough time but hang in there There are various treatments to help with the bone damage, I have extensive bone damage everywhere except my left arm and left thigh They may give uy a drug called Parmidronate or Zometa which helps strengthen the bones and relieve pain , this can have an amazing effect quite quickly. As much as he must want to be home he will get the best treatment in hospital at the moment and hopefully he will feel the benefit before too long. I am glad to hear you have your children to support you it must tough seeing your husband at such a low point but dont give up , take things a day at a time love Bridget x

[tomParticipant]

Hi Ali and Guy

Well am pleased Guy's problems are on the way to being resolved, the bone thing am not sure what if anything Guy is having to help with that? as Bridget says two drugs are used (that i know off) and the one I am having is the Zometa, and that in itself gives me no problems or side effects 😀

Please dont worry about throwing in your response to others because you and your family should concentrate on Guy's treatment.

Good Luck to you all

Love and Hugs

Tom "Onwards and Upwards" xx

[MinParticipant]

Hi again Ali,
You just concentrate on yourselves for the moment and when your not quite so stressed Im sure you will be able to contribute in the same way all of us were when we were in your position.
When they get to the cause of the problems with Guys movements and mobility they will do whatever is needed to make him as comfortable and mobile as its possible.
My husband has had/got 4 crushed vertebra and I remember him sleeping in a chair for 3-4months because he could not climb the stairs never mind get in and out of bed. He is more mobile now although not as fit as he would like to be.
They did this within a shorter time than I thought possible after starting treatment ;so be calm and patient and you will get your lives back to …..not quite normal…….but certainly acceptable. Take each day at a time and watch the improvement come. It wlll be slow and and it will seem interminable but it will get better.
The dark days will pass as progress is made and your new and different way of life begins. I know its easy to say but don't dwell too much on the negative things. Let him see you are positive for him and it will get better. I think from experience he needs to know your not hurting ( we know you are…. but put on a brave face for now)
Take a big hug from us(((((((((((((((:-) )))))))))))))))))
MIn

[zasrsParticipant]

Hi Ali

welcome, i remember so well the shock of gordons diagnosis 9 years ago, after two sct he is still going strong, well not so strong but here and doing most things he loves to do. i hope guy improves as i am sure he will, look after youself and stay positive.

best wishes

sarah xx

Sct is a stem cell transplant which may well be a treatment choice for Guy.

[sallyParticipant]

Thank you all for your great encouragement. Guy is on the Myeloma X1 trial so will have sct (see, I am getting good at this!) in time. He also seems at least resigned to a long hospital stay and is a smidgen more positive – all in the right direction.

I am so busy with our work at the moment that I may not have time to be here for a couple of weeks.
I am holding all your hugs tight.
Ali

[tomParticipant]

Hi Ali

Am sure when the SCT is due Guy will cope with it well:-D

and Positivity is a great thing, I feel it makes you better faster (but thats just me Ha ha)
Worry not about being busy and not getting on, just dont forget anything troubles you we are here for you.

Love
Tom "Onwards and Upwards" xx

[DMCParticipant]

Hi Ali & Guy,
Just wanted to welcome you to our band of wonderful friends and say hello.
We are all here for you both and will try to help and give what support we can in way of information and advice from what experience we ourselves have been through.
We are all at different stages with our condition, but yes remaining very positive is the only way forward. Your feelings matter and we all vary in those too at different times, so feel free to share because you matter too!
We are all here for you.
Hugs and best wishes,
DMC.

[Author]

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