This topic contains 10 replies, has 10 voices, and was last updated by 
Gill 12 years, 10 months ago.
First of all I would like to say I am so sorry for all the losses you have encountered. I wish you all peace and prayers.
I am the carer to my husband who is 37. He was diagnosed in 2004. The past year MM has been running the show and we have just been told our last hope chemo (Revlamid) isn't working. He has no more NHS chemo and only has the hope of a drug trial but none are scheduled to start any time soon. His Consultants are wonderful and are doing their very best to try and keep him healthy until a trial starts, although they have also said to make sure all our affairs are in order- just in case. He was just admitted into hospital today for the 2nd time this week. How do I start to say good bye? I know I am loosing him and I can't bare the pain already. I pre-planned his funeral 2wks ago when he was in hospital then because I know I won't be able to do it when the time comes. We have 3 kids (2 he took on) and a 16month old who may not remember him. I feel helpless and lost. I don't know what to expect or do. I'm scared of what's going to happen to him, cause I don't know what will happen. What do I do? How does it go form here? How do I have a life without him??
Dear Michelle
I am so sorry that you and your children and of course your husband have been struck down by this blu_y awful illness.
It is a very rough ride you have been on and I sincerely hope that this is not the end of the story or the journey for you both. I have heard that going back to the beginning is helpful, ie if he was on CDT at the outset can he go back on it whilst he waits for a trial?
Please to do not say goodbye to your husband, prepare just in case but never say never.
Talk together and say the things that need to be said, so you have no regrets later. Hopefully these will come to nothing and you can laugh about it later but dont leave things unsaid.
Try to stay posative if it is at all possible, Especialy for the children.
The Doctors will tell you when there is no hope, untill then keep the faith and support what ever decisions he makes regarding his treatment.
I am very very sad that you find yourselves at the end of the road if that is where you are but never never believe that it is all over.
My prayers will be with you.
Min
Dear Michelle I can only imagine the pain you are going through as Min said this bl–dy awful illness! Dont give up yet I was on Velcade and Revlimid neither one worked but my doctors have put me on Bendamustine and Thalidomide I am not on a trial but apparently these drugs can be applied for under special circumstances Ask your husbands doctors about it , although those two drugs may not be right for him there are others such as Polpomanide ( not sure of spelling) Take each day as it comes , talk to each other about the things that matter. I hope that something comes up very soon that will give you hope love to you both Bridget x
Dear Michelle
So So Sorry that the Bloody MM has fought off everything and left you and your Husband in Limbo.
Its a Bugger that you are both waiting for a trial to start? lord knows why they dont start one for you NOW ? am sure it wont harm but it may help.
Keep strong the team will be having talks about the what next treatment at the top of the agenda and Lord willing something will show itself.
Love and Hugs to you all at this very difficult time
Tom xxxx
My Dear Michelle, I wish I could give you a set of easy answers that would solve all your problems but, alas, I cannot.
I lost my 19 year old son in a car accident, he was on his own and he died almost instantly at the scene one bleak October night. If he had to die how I wished he could have lived just for an hour until my wife and I could have got there to be with him. Fortunately a few weeks before we had a row about his fast driving and subsequent heavy braking, I was changing the disc brakes on his car for the second time that year at the time. I say fortunately because one of the phrases I used was that the reason for my concern was because I loved him a great deal. It was a great comfort to me to know that he was aware of my love for him, something we all take very much for granted in close families.
Since I had my Myeloma diagnosis, Jul 09, I have ensured that my wife is aware of how much I love her and that I definitely do not want her to ?get off the bus of life at the next stop? when I do. We have not and do not intend to say goodbye we just cuddle and let the each other know how precious our time has been. I know it is hard for you, as it will be for my wife, but be strong ? Vasbyte.
My kindest regards.
David
Dear Michelle
However you may feel you are doing, you are very brave to have got your head round things enough to plan your husband's funeral, but we will all be hoping and praying that this is not the time you need it. Sometimes preparing for the worst is a neccesary part of being able to cope with all the distress and uncertainty.
Love in families is never lost, it is good that your children are loved by you both. That love will give you all the strength you need in the coming weeks.
I will be praying for you both that, having faced the worst possible outcome, things may in fact take a hopeful turn. As Bridget knows, they can pull things out of the hat.
Much love.
Mavis x
Hello Michelle, we lost our mum on nov 30th this year, mum knew there was nothing that could be done so she told us she wanted to be home. we made that happen for her and she was happy to be with the people she held so dear
We made sure that we spent all the time we could together and talked about all the good times.
Mum passed peacefully in her sleep and in no pain.We are just happy that mum was where she wanted to be and we comfort ourselves knowing that we did everything possible to make sure mum got everything that she had asked for.It is very hard that mum isnt here but we do try to remember all the good times. we keep our family close and help each other through the bad times.
but please dont give up yet, you never know miracles can sometimes happen.
You take care.
Gina xxxx
Hi Michelle I am so sorry that you and your husband are at the stage that you are especially the young age that he is as well (although whatever age this terrible disease does not care and is hard and awful for all concerned). I agree with the others, always make sure you say how much you love the person and try to keep positive. There are other drugs. Shout as loud as you can to try to get further treatment. Never say never. Stay strong. I know it is not easy to do that, but hopefully where one door closes another will open for you. Kay x
Hello Michelle,
I'm sorry you are at this stage. I lost my husband xmas eve 2010. I found it very hard to say goodbye because I had to be positive. [b]Please be positive[/b]more and more drugs are available.
Your husband will know himself when the time is right, so until then stay positive and hopeful. When your husband is ready he shall tell you like Michael my husband did. He'll ask you to get the family together so he can do it himself before the myeloma takes over. So until then please try and be strong. Show him that you can be positive together.
When your alone, scream, shout, cry and swear. I did!
When your husband gets down, try and bring him back up. Ask all the questions to his consultant, then you'll know that there is always another day.
I hope you and your husband can be strong, I wish you all the best and hope and pray that its not time to say goodbye for a very long time.
All the best
Love Roz xx
Hi Michelle
Just thought I would post and see how you are both doing? I hope Hubby is still staying strong.
Sending Hugs and Love
Tom ((())) xxxx
I have no idea what to say to you but just want you to know that my thoughts and prayers are with you.
MM is a beast of a thing for anybody but for your loved one at his age it is even more unfair
Gill
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