Hello Mari

glad Stephen is doing well I know my hospital Lister in Stevenage is not licenced but I have regular visits to UCH and they do so lets hope its soon run out all over the country
Regards Jo x

Hello Sue

I have been in touch with Bridget and she is not well with a bad chest infection I am sure we all wish that she will be better soon
Love Jo x

hello Jean

sorry Frank is having trouble white cells and neutrophils are all to do with fighting infection it looks like Franks white cells are to low so the doctor is worried about infection he may be brewing a cold. I think 8 weeks is much to long to wait for a scan that needs hurrying up, when you go to spain you will have to try and keep…[Read more]

Hi there Tony

Nice to hear from you. I am on the Myeloma XI trial too..I got picked for revlimid and had 4 cycles of this before I plateaud and moved onto velcade for 4 cycles. Between the 2 they brought my pp levels from 50 down to 8 and I had my SCT in July last year. 9 months on and doing fairly well bar a few more coughs and colds than…[Read more]

hi Teds
sounds interesting I hav'nt got a kindle I wonder if it could be down loaded on line
Hope you are keeping well:-)
Regards JO

Hello Tony
sorry you have had to join but welcome You will find much help and advice here as well as moral support the myeloma help line is invaaluable they are able to answer most of your questions good luck with your journey
Regards Jo x

Hello Eve

I have the all clear this month to go on holiday so we have booked up an 11 night holiday on Skiathos we go on the 4th of may really looking forward to it
Regards Jo x

Hello Eve

how are things progressing for slim will his SCT be soon and are you ok its been a long long year for you both perhaps now you can look forward to more holidays in the camper hope the sun keeps shineing for you regards to Slim
Love JO X

Hello Mavis
so glad you are home at last that will make you feel a bit better both my daughters are doing the race for life in Bedford they are walking it, both of them have done it for the last couple of years
Well CDT i had four lots of CDT which put me into a good part remission or plateau stage when I finished that I took thalidomide 100mg…[Read more]

Best of luck Helen lets hope you find your way though all this paper work and it will all go smoothly for you I cannot advise you about benefits as I am retired and on a pension
Regards Jo x

Thanks Ellen,
Just need to stay in remission for a good 4 or 5 years or more and hopefully there'll be some trials in the UK by then…..or maybe we'll be even further along the line 🙂
Always good to have some hope in the pipeline!!!
Look forward to reading MUK's work on this next week
Debs x

Hi David,

Yes I think they could well be part of life. I had my SCT in July and have only really had 3 weeks since the beginning of December where I've been without any sort of illness (wish I'd been on the antibiotics you were on!!!)

Paracetamol and lemsip cold and flu are my lifeline these days!!! I keep them in business I think.

But…[Read more]

Does anyone from MUK have any news on whether this is a drug we should be excited about or whether it is too good to be true….first time in ages I have been positively optimistic about what could be ahead of us, but I am wary as nothing was mentioned about this sort of vaccine at the info day.

Hi Jet

how are you not heard from you for a while, thanks for the link

Regards Jo x

It's frustrating though that there is limited support out there. I just about get the ESA (although am waiting for them to question that!) but am not eligible for DLA as I don't need support with caring for myself – I can just about cook etc but we have a cleaner as I don't have the energy for that. I wish I'd applied for it when there was NO WAY…[Read more]

Hi Helen

Think Paul has covered most things. I used to work in HR before all of this although it's been a while since I was on the advice side of things.

THey have a duty of care to see if you are fit for work….they shouldn't be asking you back if you aren't, but as with all business, are likely to take the view that if you are fit for…[Read more]

Hi Kirsty,

We'd all be lying if we said that the SCT was a lovely experience, but you do get through it!

The main things are to keep people away as much as possible for the 3 weeks you're in, and if possible for a month or so after. I only let my husband, and one of my 5 siblings visit….my parents and the rest, I made wait. I thought it…[Read more]

Hi Kay,

I'm with the others…think you are amazing to have gone back to work so much. I think about it and then know that I can't when i get ill from just overdoing it with the kids and looking after the house.
I suppose where you get joint pain, I get coughs and colds and exhaustion.
Perhaps think about doing a bit less if your work are…[Read more]

David
I am glad I met you too
😉
Love Jox