[rosieb123Participant]

Hi Jean
He had his stem cell transplant at BCH but he usually attends the Ulster hospital at Dondonald. Is your husband treated at the City? Do you know is there still a myeloma support group in Belfast? You have both been living with MM for a long time now since 2006 I'm sure you must feel worn down with it all after such a long time. Great he smouldered for such a long time though.
Love Rosie

[rosieb123Participant]

Hi Vicki and Mavis
Thanks for welcoming me to the forum, it's good to be able to chat to others in the same situation and who understands this journey we are all on.
Mavis I was able to get a copy of the children's book a few weeks ago at the n.Ireland info day. it is great, just the right level for my youngest child. I gave his teacher a copy to look through the same weekend as I read it to my son just in case he talked about it to his teacher she had the same information as him and knew how to respond. For anyone else with young children the book is called " Kelsey and the yellow kite" it tells the story of Kelsey and her dad who has MM from when he was first diagnosed, through stem cell transplant, remission and relapse in a very child friendly and warm way. It's a great resource for any one needing to explain about mm to a young child. I guess It would work for grandchildren too, "Kelsey's dad has the same thing as granddad or grandma, " that sort of thing.
Wishing you both well
Rosie

[rosieb123Participant]

eve
I'm so sorry that slim is so unwell i hope that he picks up soon. It must be so hard for you at the moment i hope you have the support of friends and family. your right about the kids being a welcome distraction i am so greatful for them but sometimes my heart breaks for them when i see glimpses of their fears and hurts about their daddy. we try to live life to the full and like you say always have hope. my thoughts are with you eve and i pray that slim will grow stronger.
Rosie

[rosieb123Participant]

hi eve
im new to the forum but have been reading everyones posts for about two years now and feel i know you all. im carer for my husband who has had myeloma for three and a half years now, he was 45 when he was diagnosed. It's been such a hard journey he has had velcade followed by a stem cell transplant. His remision only lasted 9 months so he started revlimid but in june this year his levels started rising again and they added cyclophosphamide into the mix which seems to be working. the doctor says he will go back on velcade next and then probably a trial. he was very ill when he was first diagnosed he also had kidney failure. he has never really got back to his old self which is sad. We have eight children the little one is 7 and the oldest 25 and a little granddaughter who is 17 months and another one on the way. just wanted to say reading your posts have always encouraged me to keep going so thankyou Eve. Thinking of you and slim.
Rosie

[rosieb123Participant]

hello
Its so hard when you first get that diagnoses for both patient and carer {im the carer)i remember looking at my husband and kids and realising nothing was ever going to be the same again and just breaking my heart. My youngest child was only 3 at the time, that was three and a half years ago and its been arollercoaster but i can honestly say although life may be different than we expected we have lived life to the full together making the most of each day. we have done things and went places that we never would have befor myeloma. i supose you realise how precious life is. Dont be too hard on yourself its only been a few months and some days will just be about surviving, getting through. but dont worry you will smile again you will have fun days and holidays also sad days and weepy days. on those days the people you love will give you the strength you need to keep going. i guess what im trying to say is myeloma is an awful thing, of course your devistated both for yourself, your husband and your children. take things a day at a time and let your family and friends help when you need a break. i wish you and your wee family well in the midst of it all.
blessings, Rosie

[rosieb123Participant]

hi Illona
Thanks for your reply. just read your first post, you have all had a hard time, it is good you are there to support your parents through all this. I hope you have support too as its not easy watching someone you love go through such a difficult time, im sure you are all still in shock. Hope you can find hope in the midst of it all and learn to live life to the fullest in your new reality.
Rosie

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