Oh Jean,

I'm so sorry that you have had such a disasterous holiday….you must be coming back more tired and worried than when you left. But people are right, you can't not do these things just in case. Hopefully as time goes on, you can put it down to a bl_*dy bad experience and when you have a lovely time next time, you'll forget about…[Read more]

Hi there.
Just wanted to say that I hope the mouth feels better soon and that your happiness levels go back up for you!

It's been great reading your blog postings…what a good way to do it for everyone.

Keep your chin up and you'll hopefully be out of there in the next week 🙂
Love
Debs x

Hi Roz

Aw thats lovely, and says exactly what it means.

with love michelle x x

Hi Tom and Bridget

Glad she is not the only one that falls asleep lol! She has my Dad and Brother in stitches sometimes, She will answer crossword questions for My Dad while she is sleeping but doesnt know the answer when she is awake ha ha ha!! and the other day picked up a fan and started faning herself, gosh what is the world of MM coming…[Read more]

Hi Roz

Yes she is, and i have found her incredible to be honest, dont know how i would have got thro this without her! She goes beyond her job specification, she in my opinion is the best one to speak to, she gives straight forward answers, and thats what i like, good luck with thursday keep us posted.

with much love michelle x x

I think they will be able to cancel/postpone due to the circumstances.
Have a lovely family tea tomoz, thinking of you.

with much love michelle x x

Hi Donna

Thanks for the reply, have been thinking about you.

I am sorry that you did not get any better news, enjoy the time you have with him, I know its easy for me to say, I understand taking everyday as it comes and everyday is a bonus.

Mum is doing ok thanks, very very tired and itching with the chemo, but seems ok at the mo.

take…[Read more]

Thanks Tom, she is doing reasonably well, extremely tired tho, have to watch for her falling asleep with hot drinks in her hand lol!!! Itching still driving her mad, she back at hospital on monday, so hope they will give her something for it this time.

with love michelle x x

Hi Roz

The roads are so much better round sheffield now, I really feel for you not being able to get to see him, but you keep in touch with the specialist nurse, is it Andrea Foster??

with love michelle x x

Hi Donna

Just wondered if you managed to get to the hospital for second opinion on thursday with the weather.

with love michelle x x

Hi Scott,

Interesting to hear about your figures, though obviously I'm sorry to hear they've progressed a bit. But if it helps, I had a couple of blips like that and then things went back to normal again, before I started to show a steady deterioration in figures. So it's definitely worth watching for a month or so before you make any bg…[Read more]

Hi. My husband has just started Velcaide. He had his SCT 5yrs ago and has been on Thalidamide. He almost had to do a trial at Birmingham Hosp but (Thank God) Sarah at Myeloma UK helped get funding for it at Burton. The trial would have been fine but it was 50/50 that he would get the back up drug that goes with it. So I would suggest to get ALL…[Read more]

Hi Lindsey,
I feel very much the same as you about the trial….don't think it can be a bad thing at all, and hopefully I'll avoid the velcade option as I'd rather go straight to transplant and just get on with it all.

Like your mum, I'm having limited side effects and am just really tired (but I always am with 2 little kids!). It was great to…[Read more]

Well, I thought I'd do a quick update in case anyone else is going on the Myeloma XI trial.
I'm now on day 5, so have had 4 days on dex and 1 day off, and still seem to be doing pretty well! I know it is early days….as Nick keeps telling me, we've got over 100 to go, but you have to take what you're given don't you!
I think I can sum up so…[Read more]

Hi guys

thanks, I have given her some antihistamine today and that has helped, she is back at hospital tomoz to see how she is getting on, so she is going to mention to the team then. dont know whether i was right or wrong giving but im sure it can only help, when i looked at her back she has a massive red rash, and it sure did look…[Read more]

Hi Kathleen

Difficult one, just try and stick to really high calorific value food as you can, but as Bridget says cheese and butter, however, i have to suggest CHOCOLATE!!!! well its an excuse to eat it, problem with cheese and butters is the high fat content, and that could lead to further problems. just looked on the web and it says to put…[Read more]

Hi Scott and welcome, its my mum that has myeloma, but it is I who uses this site for advise and friendship.

As Debs says, hope you stay smouldering for a long time coming.

with love michelle x

Hi donna

I have found this site a great help, glad you have spoken to the nurses and are getting that second opinion, please let me know how you get on.

Mum just getting over pheumonia but is doing well thanks.

with love michelle x x

Hi Scott,

Welcome to the UK website….and yes I was down as hopefulmum…..don't like the title now (though of course I am hopeful!!) but I signed on as that when I was pretty depressed about my diagnosis and when all I'd read was the american titles!

A bit more upbeat now, despite having just started on CRD (via the Myeloma XI trial).…[Read more]