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]

I think it is a good idea and used to keep a daily diary of how I felt on treatment and what day of the cycle it was. I think my consultant used to dread me getting my notebook out but I didnt care!

Hi Tom
great news it is for you both, long may it continue

Wendy

Hi David
thats great news, another big sigh of relief, interesting about the water.
My 3 mth check up next Friday, so starting to stress now!
Wendy

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

Hi Angie
Eve said it all, hold her hand, be there, tell her you love and give her permission to leave. How hard it must be.
Love Helen

Thanks Teresa

Dear Eve and Teresa
I had abandoned the computer, didn't realise the post finally loaded, it is of Sullivan Bay in the Mahurangi Park, north of Auckland. I think we were gathering shells for the little boys, though secretly I stashed some in my pocket and they are on my kitchen table now.
You are right Eve the scenery is spectacular, round…[Read more]

Dear Teresa, well, I tried to put new pics on, failed again, it is in the profile but not on the site. :-/

Wendy I'm glad you are pleased with your new hair too, it's good to do the normal things again. Even if you don't feel normal.

Eve I told my husband about all his different women, he laughed, said they were all very bad tempered!…[Read more]

thanks Eva for your reply, hope your very late dinner was good! I am not really a band or clip kind of girl so today I had just had enough and arranged to get my hair cut, accepted that the curls would go along with the ruffles and I definitely think it looks better and I feel better so thats the main thing! Still a few curls left on top too:-)