[rosieb123Participant]

hi ive been reading everyone's post for ages now and i thought it was about time i said hello. my husband was diagnosed with myeloma in 2010 aged 45. He was rushed in to hospital with kidney failure and was diagnosed with myeloma a few days later. He had a stem cell transplant early 2011 but unfortunately his light chains started to rise again nine months later and he was put on revlimid.
Cyclophosphamide was added in june when his light chains started to rise again. its been a tough few years as we also have a daughter with health issues. we have 8 children ranging from age 7 to 25. seven of them still live at home so life is busy. Its been very helpful and inspiring reading everyone's posts so a big thankyou to all you guys.
rosie

[Illy68Participant]

Greetings Rosie from another newbie,sorry i cannot offer up info as i'm only the beginner for my Dad in all this.
i'm sure there will be other people along soon to help and give there input.It sou nds like you
u must have a lot of strength in you to cope with all those children to attend to as well as your husband being under the Myeloma bubble.My hat goes off to you as it could not have been easy for you all.Stay strong hunny and i wish you and your family all the best.

KEEP SMILEING!:-)

Regards,
Illona.xx

[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

[VickiParticipant]

Hi Rosie and Iona,

My partner Colin was diagnosed in 2011 age 55 followed by sct in 2012. It was a tough old road and its hard to be normal, as for a while we forgot what normal was. We are trying our best to keep going. You guys keep going too, it's hard for the supporter but with a team spirit it can be done. Colin started with light chains of 31000 and it halved after the first session. Be patient, ask lots of questions. You can do it. Rosie it might be tough with 7 kids at home and the hubby 45!

Best of luck with it

Vicki and Colin x

[mhnevillParticipant]

Hi Rosie

Welcome from me too, but I really do wish I didn't have to. You certainly have more than enough on your plate. One thing that strikes me .. I saw that someone had raised some money to produce a book explaining MM to children. If you haven't seen it and think it might help some of your brood, I'm sure Ellen on the Help Line can point you in the right direction.

I am always amazed how folk do dredge up the resources to cope with appalling situations. It sounds like you have reserves of inner strength.

Love and prayers for you all.

Mavis x

[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

[jmsmythParticipant]

Hi Rosie

Sorry you had to join us but welcome. As Mavis says you have an awful lot on your plate. They are a great bunch here and will help you as much as they can. It's a great place to have a moan Nd a good old rant. My husband was diagnose 2006 and smouldered till March this year when he had a SCT. I noticed you said you were at an info day in N Ireland. Does you husband BCH?

Rosie I wish you bot well
Live Jean

[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

[jmsmythParticipant]

Hi Rosie

Frank is with Dr Drake at BCH. Unfortunately she is on long term sick leave so we see registrars. There is a replacement for her but ……….:-P .

Rosie cancer focus every now and then have support groups. I registered with them and they send me info and what the group will be talking about. Haven't been to one as I can't get Frank to go. He wants to forget about MM as long as he can and brings it to his mind on hospital days. (At least that's what he tells me) your husband is so young to have this horrible disease. Oh boy you really have your hands full. I'm one of 7 children and have 4 of my own and it's only now I appreciate what my poor mum went through and you with 8 – you must be exhausted. Hope you are getting lots of support. Lenard something new every day – thought all Mm was dealt with at BCH. Did you see Michael Quinn at info day!? He's very approachable. Mary DrKe was supposed to be there but as she is sick …….

Rosie hope things start to improve for your husband
Take care of yourself
Love Jean

[tomParticipant]

Hi Rosie

A warm welcome to you both, I had my SCT in December 2009 so am coming up to its fourth birthday party lol.
Good luck to you both on this road to remission

Tom onwards and upwards xx

[rosieb123Participant]

jean
it must be hard not having your reguler doctor, I know we have built a real trust with our doctor, although the other doctors in the unit are great too. Chris gets all his treatment at the ulster but I think the City is the only place that does transplants in N.I. we did have a wee chat with Michael Quinn at the info day, he was Chris' doctor when he was getting his sct. Thanks for the bizz about cancer focus, not sure if my hubby would go either but hay no harm in trying. My husband keeps positive most of the time which really helps the whole family to keep living life and not get too down, obviously some days thats easier than others.
blessings,
Rosie
Hi Tom
4 years, thats wonderful, you'll have lots to celebrate this christmas
🙂

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