[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 you felt. I miss her lots
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 fingers crossed that it does.

Back to work in a couple of weeks, this is the third postponement, I think HR will be heartily sick of me soon. Rest assured Eve, they are not letting me go anywhere clinical just yet, I'm office bound in our university department for quite some time, catching up on lots of paperwork:-P

I'm getting used to the hair colour now, and having to spend 15 minutes arranging it every day, but no one recognises me anymore which is terribly funny! Should have done it years ago!
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 horrible to people when they asked what I'd like to eat because I could not tell them. I'd get very cross that they could not understand how hard making a decision about food was. If I chose something at midday it did not mean I would actually want to eat it later. Childishly I even found myself resenting them for being able to eat and their concern felt as though they were rubbing it in. I behaved so badly.:-0 After a week or so after I came out I took over the catering again but often didn't eat what I'd cooked. I did make sure there was always lots of stuff in the fridge and tried to have something at every meal time but it was about 5 months before I was eating properly.
I am sorely reminded about it now since this tummy bug I've had has sent my appetite into a nose dive! I think you are just going to have to grit your teeth, serve several dishes at each meal, tapas style and let him pick and chose what he wants for himself. I've read your previous, small helpings advice and small plates etc, no offence but I would have hated that. I'm a grown up and I want a grown up plate, it's hard being an invalid, needy and helpless. You lose your sense of self and hate yourself for burdening the people you love the most with this illness, then you add insult to injury by being grossly ill while you have the treatment. It is hard for me to write about this because I was such a bad patient, and I feel very guilty for afflicting my family with it. Hope I've explained a bit more about some of the feelings I had as a patient. Keep going with your grand job, Slim ( like myself and others) is so lucky to have someone who loves him so much looking out for him,
Love Helen

[HelenParticipant]

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 recovery from these supposedly trivial infections takes. I can't read or concentrate on anything again and am reduced to sitting on the sofa watching back numbers of Morse all over again.
Very grumpy Helen 🙁 🙁

[HelenParticipant]

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. They ask more about where you are in your treatment and how often you are hospitalised etc.
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[Author]

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