[HelenParticipant]

Hello Liz
No I didn't have any plasmacytoma, I became progressively more anaemic as the mm cells took over my bone marrow and stopped the normal blood cell production. When I became too anaemic to give blood at the donor session I was sent for tests. That was October 10. I was diagnosed with mm in February 11, fortunately for me i have no obvious plasmacytomas, bone or kidney involvement. I was on chemo for 4 months, stem cell retrieval in July and high dose chemo and stem cell rescue in august. Now I'm 18 weeks post procedure and in complete remission, not back to work yet but slowly recovering.

It is hard for everyone to come to terms with such big life changes as this and the stresses and strains on patients and families are difficult to deal with, especially when you have been apparently fit and the emotional and physical effects of the drugs on top of the diagnosis knock the stuffing out of the best of us. I don't know about anyone else but i hate the sheer sadness of the alteration to my lifestyle and future plans (I'm 2 years away from retiring from nursing) and was looking forward to escaping from hospitals, only to find myself on the other side! As I said earlier ask away whatever and whenever you need.
Helen

[HelenParticipant]

Hi liz
Bone marrow transplant is a generic term these days and can mean any of several procedures. Many of us mm sufferers will have autologous stem cell infusions (our own cells previously withdrawn and saved) ( commonly called transplants) after high dose chemotherapy and some will have additional allogenic (donor cells) you need to get reading some of the info sheets on this site and ask your dads specialist nurse for the information on exactly what he will be having so you are prepared. It's not easy or pretty but there is much info on this site here from some of the people who have recently had their transplants. Keep in touch
Helen

[HelenParticipant]

Fingers crossed for today Eve
Love Helen

[HelenParticipant]

Hello Kay
I can't help here but hope all goes well on Friday
Love Helen

[HelenParticipant]

Dear Ed
I too am on the patient side of this select group. It is a hard road for you carers to travel with us but I can only reiterate what others have said, here is a place where you find support even if you only read about others experiences.

When I first found myself coming to terms with the disease I visualised myself in a small boat in a big sea, towing a large boat with my friends and family in it, all trying to help but no where near me, …. now I know that there are many of us out there all towing our boats and paddling furiously but we know we are not alone and someone always has a reply, even if it's just to bolster you up on a bad day.
Wishing you hope and courage
Helen

[HelenParticipant]

Hello Heather
It's a funny place to meet people, I too am a nurse and am now 4 months post sct and thinking about the return to work, it's not an easy prospect I may say but I know I have to go back, I'm not really one of natures housewives and the ironing pile looks more intimidating than the boss. I know the emotional draw to work is strong but the prospect of the stress of it is terrifying.
I think the rudderless feeling after the high intensity treatment is hard to get used to and adjusting to a 'new' normal is very difficult. Having to get on with the same things as before when you feel emotionally so different is almost crippling.
I am planning holidays, I think that this is going to be the only way I can move forward. By having goals which I can set. So I'm interested to hear how you get on, do keep in touch.
Helen

[HelenParticipant]

Hello Chris
Upbeat and flippant is good, sad, mad and angry bit is normal, I'm still moving between all of those things and have spent the last year on the roller coaster that is myeloma. I'm now 4 months post stem cell transplant and doing ok. Ask any question on here, you will get lots of support – even at those funny times of the day or night when you don't think there will be anyone even awake. Just keep taking the tablets……..
Helen

[HelenParticipant]

Awww Tom thanks ever so much, hope you had a good day, I think we did, I cooked lunch for 14 then snuck away to sleep for hours this afternoon so now wide awake……..
Love Helen

[HelenParticipant]

Happy birthday Dai
Love helen

[HelenParticipant]

Been away, had chest infection , got ready for Christmas………. Then become allergic to the wig!!!! Am now sporting 1 cm hair and very snazzy earrings.
Back from the carol service and wishing all of you a peaceful and happy Christmas
Helen

[HelenParticipant]

That sound very scary indeed, no mishaps please! When will you find out if it's working?
Love Helen

[HelenParticipant]

Hi Vicki
As Bridget says, no real time scale now, worse is between 4 and 14 days usually round day 6- 12 but varies, keep him at arms lenth so he gets no infection from anyone, ice is only vital when getting the melphalan, I can't bear the thought of an ice cube now, I had so many to help the mouth I sickened myself. I took the anti sickness stuff regularly for about 3 weeks too. Every day is different and while it is horrid to watch, we get there eventually, keep tough and cheerful, don't stay for long visits and keep bringing small amounts of nice things, I liked very cold yoghurt, fizzy water and jelly ate nothing much else for a month. Keep in touch.
Helen

[HelenParticipant]

How is it going with you just now Bridget?
Love Helen

[HelenParticipant]

What a cutie he is.
I love christmas and am looking forward to putting up the tree. We have a huge family gathering just after Christmas for my dads birthday, so it is all very exciting
Helen

[HelenParticipant]

Dear Gina
How terribly sad for you all, but how lovely to know she was surrounded by such love and was able to see you on your big day.
Love Helen

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