I simply don´t understand why adults who are fighting a life threatening condition are now allowed a record of their treatment progress.
Whilst I was undergoing my conditioning chemo prior to sct I asked my specialist for a photocopy of my prescription which included my monthly blood results including neutrophils etc. etc. I was on such a…[Read more]

Hello Everyone

Just a lne to thank you all for your lovely messages following my good news – a zero paraprotien level. You have all been so encouraging and just wanted to say that the last year has been made so much easier having such a support network to turn to. Nice to know that we are all welcome whatever our news is – good or bad.
I…[Read more]

For Gaye ; This morning when I read that you had left us I cried . As the day has gone on I have been thinking of your wonderful warm nature and how your posts written with such warmth showed us what a caring person you were .When I first found this site I was unsure as to whether the forum was something I wanted to take part in , but the warm…[Read more]

Hi Ivan I am glad you were seen on the ward it really does make sense for them to see you as they know all the relevant details of your illness and treatment . I can understand you being disappointed having to take time off work but sometimes its the best thing rather than struggling on and making things worse. We have all had these minor blips…[Read more]

Congrats Carol great news keep on letting us know how you are getting on
A lady in my support group was one of the first to get revlimid our MP fought to get it for her, she has been on it for nearly four years and now she has a dose of 15mgs every other day and no Dex she is well and her Para are stil 0 so plenty of hope there

Keep well…[Read more]

I do know what you mean I always feel good after a walk and knowing that I can do it I will do it it does give you small sense of I am in charge.
I also am not allowed to run so it just as well I have never liked it anyway always a tortoise never the Hare

Keep well Love Jo

Thank you Eve,

You are quite right, Gaye was thoughtful enough to let us know personally that she was taking her path onwards with no further treatment for her MM. She painted her picture of the hospice at Westcliffe-On-Sea with its gardens and left us in no doubt that she was comfortable, cared for and ready for the next step.

I was hoping…[Read more]

It is sad news,but not unexpected it was so nice of Gaye to think about us,and to make sure we new that she has passed away.
That is consideration beyond the grave,such a thoughtful woman,putting her house in order,she will be remembered with big smiles on this site:-)Eve

I'm trawling through the forum, being flippant, being as bright as I can be and my heart gave a little jump when I saw new posts in Gaye's thread. I was hoping for some garden gossip, perhaps even a word from the great lady herself. But she has gone.

Oh Gaye, I am so, so sorry.

Dai. xxx

It is Elizellen… I will make enquiries when I return to active duty on September 12th. 🙂

If those charges are universally applied then I will have some cash left for other things.

Let's see:

A fresh box of 'Celebrations' every clinic £ ?
A personal hand-warming pillow:…[Read more]

Hi Ivan
I can understand you not wanting to spend time off work,but at least you are being looked at,have you got a good boss?.
Do not let it get you down,You will find in time,that you become more accustomed to these little hiccups,best that it is dealt with early,
MRI scann will show any bone damage on spine,if you look at some of the other…[Read more]

Thankyou Ellen for letting us know Gaye was a very big asset to this forum and she will be missed by a lot of people . I will remember her for her compassion and wonderful sense of humour even when she was going through very tough times Bridget

Hi Russell
Welcome to a club nobody wants to be in!! but we are and it is not only informative,but some times funny,but you will have more fun,in the under fifties ,they are allowed to swear when you get angry ,older ones swear in spaces h-e-l-l.!!:-P
I see it was 4 am when you posted,we have all been there at that time,its when the demons come…[Read more]

Hi Russell you must be reeling from the shock of hearing you have myeloma .The internet does throw up some scary facts , be careful about searching on there as information is often incorrect or out of date The average age is much lower than 70 now and although you are very young at 28 there are quite a few under 50s and several under30s , so…[Read more]

I have become acclimatised to my lack of mobility (bone damage and PN) and tend to think of exercise and general lifestyles as pre-mm and post-mm… the first a memory the second a reality and that is fine… I have no big issues or traumas over the matter… but I do miss the actual walking… the scenery that changed with every corner, the…[Read more]

Hi David

I have exercised since I finished CDT it always makes me feel better my husband Geoff and I usually walk about three miles every day it takes us about an hour not rushing then! we swim some times but I am a bit worried about infections from the public pool any way Mc Millian have said just this last week all cancer suffers should do…[Read more]

I'm with Bridget and Min… good luck with your remission Carol and long may it stay fixed at 0pp.

There are quite a few 'regulars' to this forum who are living their lives in remission from MM and we rarely see hide nor hair of them… and to tell the truth I am glad that they are out there hopefully making the most of their lives for as long…[Read more]

I used to be full of natural steroids… although I was a landlord of a real ale pub and good, fresh food restaurant, I hardly ever bothered with alcohol… I enjoyed the lift of a natural buzz that came from somewhere within… but these days my natural buzz has been swatted by years of daily meds.

But like you, when I heard about the £150:…[Read more]

Not here… Occasionally I manage to blag a print-out of my bloods but that's about it. Everything else disappears into the big (Red) medical records folder.

The other week I opened my records folder – I was waiting for a Velcade infusion and I had to fill in my record sheet of aches and pains etc… I could see where it was lodged and so I…[Read more]

Hi Eve,

I have emailed Craig and he has confirmed that he is happy for me to attend.

So… first spot after lunch:

[b]13.30 Multiple Myeloma ? A Patient Perspective[/b]

Which will be my perspective on how we can be helped on our path towards individualisation of treatments by laboratory and technical services – especially,…[Read more]