Dear Jean
I don't know about right hand or left hand here, but you do not seem to be getting the same sort of information that I do.
I'm a low secretor ( oligo secretory) but I had an IgA pp (paraprotein) level of 6 and a Lambda light chain reading of 700, Bmb showed 60% marrow involvement on day of diagnosis. After a month of therapy I had pp…[Read more]

Hi Keith
I've had a few mouth ulcers but not many, I can't use mouthwashes at all because they sting too much, so I just clean my teeth and rinse with cold water, extra strong minty toothpaste is unpleasant. My mouth feels as though I've just burnt it with too hot tea, so I have to be careful not to burn it if you get my meaning. I still find…[Read more]

Well boys as we've 'got down and dirty' and totally personal………;-) . I have noticed that there is a pattern, and here is where the diary comes in handy again to make notes! The first week is normal to diarrhoea, the second normal to bunged up and the third is daily fibre, prunes, figs, movecol, dynamite, calls to the CSN for extra…[Read more]

Dear Angie
It is so sad for you, I hope you were all there with her. My thoughts are with you
Love Helen

Hi Alethea
Welcome? Myeloma is a tough disease isn't it? It really messes with your head, but you do get there. It's all so intense at the beginning with the diagnosis and the treatment bombarded at you when you are still reeling with shock, especially mum as well.
Do get help, it is there and there are many here who will help if they can
Love…

Hi Tina
I'm still not back to work and it is over 10 months since my SCT, I was going back in February but got pneumonia, then last week I got gastroenteritis, now I'm aiming for next week on a phased return, if it doesn't work out I'll have to rethink. Whatever you decide, don't go back too soon, all the people at work soon forget what you've…[Read more]

Hi Dai
Mmmm yes never quite know what to expect until you get there, most unpleasant and unpredictable , almost disabling sometimes
Love Helen

Hi Dai
You are so right, there was only one of her posts where I thought she was in pain and never a direct reference, so selfless and calming, and cheery really, I read the posts on the site for a few months before I felt able to contribute myself, she was one of the reasons I felt comfortable contributing such personal feelings.
Love Helen

Dear Dai
Bridget was a god send to me at 1 in the morning, unable to sleep, another woman of similar age, talking about nothing and everything, she was my little voice in the wilderness, during some very difficult days when you can not bring yourself to share how you feel with anyone else. With Bridget you didn't need to say much -she knew how…[Read more]

Hi Keith
I've had no end of fatigue and disrupted gut since being on Revlimid. Now I'm having a break after the latest bout to see if it settles down. I will still go back on it if I can even though I think the side effects are quite tricky to manage.
Love Helen

Dear Andy
I can't add anything to the questions already said, other than look in the Trials Tracker here on the site to see what is available around the country and ask to be sent there if that is possible or feasible. You will have to be quite forceful and firm I suspect if that is a direction you want to take.
Good luck
Love Helen

Hi Mavis
I'm so glad to hear the drugs have done the trick, I took about 4 weeks to feel 'normal' again after the RCD which I had. Hope you are running around soon.
Love Helen

Dear Rosie, Tom, Vicki and Eve
Thank you very much for your kind words, you do make me feel better. I've spent the last few days catching up on sleep and watching 'Revenge'. Total escapism!

Am off the Revlimid for 2 weeks now, body holiday to make sure everything settles down ok, and if not, it's more investigations, so yes, I've got my…[Read more]

Ha Mavis
Thank you
I went to our church anniversary party yesterday on my way home from hospital and one of the girls said the floods and tempest on Thursday were a sign I should heed! If we get a plague of locusts I will leave work 🙂

How is your treatment going, you have been quite quiet recently?
Love Helen

Hi Eve
I remember feeling that I would never be able to eat anything again last September.
Everything was an effort and I lost an awful lot of weight. I've lived mostly on special k, bread and butter, chicken and broccoli with chocolate and shortbread since. I also ate soup every day as it was a way to get fluid in as well. I was also very…[Read more]

Or Not!
I was due to return to work last week. However, on the day, found myself in hospital again:-( Gastrointestinal infection of unknown type, they have discharged me now and I'm sitting here feeling very sorry for myself as I have been reduced to a pile of weak incompetence. I find it very difficult to come to terms with the length of time…[Read more]

Hi David
This is a good idea,
I used World First who are on the Myeloma UK site. After your previous advice to me about including ALL the things which have ever been diagnosed over the years, I did that and we were both insured for around £180 for our New Zealand trip. They do not ask about staging which does make it easy to fill in the form.…[Read more]

Hi Dai
No I don't have significant bone damage. In fact I have no back pain to speak of since my SCT. I don't remember all the questions I was asked but I don't recall that being specified, unless it was in the radiotherapy or operations section?
Love Helen

Dear Ann
Did you try World First insurance, it's on the list through the site, I travelled to France between harvest and transplant and recently to New Zealand less than 200 each time, wasn't on chemo but was on revlimid. It's worth a look if the docs say he's fit to travel
Love Helen

Glad you had a good holiday Keith, fingers crossed for the Rev/Dex
Love Helen