Hi All,
I feel good that I am able to put my current position re the MM on here, this site has helped me and so I hope I can help others too.
Since reading then joining this site I have soaked up all the positives which are such a different picture to the one which was painted to us at the time of diagnosis, like many others we first made the…[Read more]

Hi Jane,
Your post has brought back memories of this time for me, like you had to have pregnancy test at 53…….I was so ill at that time said it would be impossible but still had to get it done anyway!!!!! had test which confirmed I was pre menopausal and so had to have a test every time if I remember correctly for the next five treatments. Do…[Read more]

Thanks Helen,
wow 3000 registered members.
I went to a support group meeting last wednesday and met just 2 fellow MM sufferers who said they read and look at this site but do not participate and so would not I presume have registered, I wonder how many others like them there are too!!
Considering on diagnosis I was told this is a rare cancer I…[Read more]

Hi Gill,
Its a good point you have made here, I also wonder just how many members we have on here! I know like I did, a lot of people read and watch before joining in, some I suspect may never join the forum to which we wish we never had to read or join!
Tom says you have a birthday soon, so do I, Infact I have 2 just around the corner – 22nd…[Read more]

Thank you Tom and Eve,
You managed to make me laugh after being very sad reading of the loss of Tinkerbell.
This site is everything to me,imformative, funny, sad, helpful to know the way I am sometimes feeling, be it good or bad is part of the MM journey.
I went with my husband the other evening to a support group where for the first time I…[Read more]

P.S.
I must update my photo as current one on here was taken way back in the summer ! 🙂
Babs

Hi Eve,
I have a good friend who had a kidney transplant and her DLA stopped after the transplant because she was then deemed to be able to manage again as no longer having to have dialisis,also amputees loose it after getting a replacement limb, our STC does not do the same for us, most of MM sufferers who receive DLA get it due to the bone…[Read more]

Hi Eve,
just watched the programme on catch up, very interesting.
Love Babs

Hi Ann and Pete,
I too had trouble swallowing after my SCT, the pineapple juice definately helped, and like Slim I also found drinking cold milk helped and I was given oramorph just before meals and as for the tablets, yes I too had trouble especially 1 little one which I took 3 times a day and hated because it always seemed to stick in my…[Read more]

Helen R,
The limit for savings is currently £16,000 for means tested benefits, the first £6,000 is totally disregarded and anything above to the limit is then taken into account,
Like wise you can get contribution based ESA and if you have a occupational pension this is taken into account too, the first £85 is disregarded then half the re…[Read more]

Hi Tom,
As everyone has said DLA can be given to us MM sufferers to aid our mobility and care needs, I too on the outside look normal and when sitting in the car can be taken for person with normal mobility, however it only has to be a little too cold and my back aches with pain, also I can walk but only short distances then my back aches so I…[Read more]

Great News, so pleased for you both and so promising for everyone just embarking on this mm journey.

Love

Babs

Hi Tom,
Really good to read your post, it has been for me very reassuring to hear all the positive posts just like yours on here.
I hope it helps many others too who find themselves joining us on this journey.
Love
Babs

Hi Vicky and Colin,
I was randomised to both Revlimid and Vorinostat and took them for 1 and half months but was very unwell, even hospitalised with chest pains so I stopped taking them both, after seeing my local consultant he wanted me to remain on the Revlimid but had to check first if I could change after being randomised, he must have been…[Read more]

Hi Ali,
Yes sorry not kept in touch since before Christmas, I was being very unwell to such an extent my hubby said I was as bad as before diagnosis, I missed all pre christmas meets with friends and was so fed up and as we had hotel booked for three days over christmas was worried I would be ill the whole time so Thursday before I just stopped…[Read more]

Hi Tom,
At the moment I am feeling the best I have since prior to diagnosis, planning on keeping this way as long as I can too.
I can drive short distances but need to be careful as if back starts to ache I can have problems with driving, so my husband has said he will come with me and drive me to the next meeting, it is not until March and is…[Read more]

Hi Tom,
I currently go to my local hospital every 4 weeks for Zometa and have just started to go in for bloods and assessments every four weeks then two days later to collect my pills, until now I have yet to meet any one else there with myeloma! My nearest myeloma support group is at tunbridge wells which is about 35 to 40 miles away from my…[Read more]