Hi Craig

Well I am shocked,sorry you have to get people on board and start ruffling a few feathers,if you cannot get help from macmillan nurses go to local papers specially now as the lords have just thrown out a bill concerning disabled people.

No one gets Myeloma over night,you have to get your doctor on board,to put it bluntly this is out…[Read more]

Hi all
Well there's a turn up fit the books! Here in N Ireland we always get the rough weather but at the moment the temp outside is in the balmy 7's or 45 in real money. Enjoy the snow. We will probably get it eventually!

Jean x

Hi Craig and Etta

Sounds if you have been through the mill a bit,I can only tell you Slim was in this position,in may last year,in a wheelchair,at this present moment he is out walking the dog.!!!!!

As you say with food a little and often,as much as you can Slim has now put on 1st 8ib,after loosing 4 st.so getting there.I found buying small…[Read more]

Hi Everyone
Well the garden of England has become a white garden over night.

Woke up and the ground is white and the sky dark grey plenty more on the way.Hard to say how much has fallen as its drifted and looks lots in some places.Eve

Hi Jet
I'm a couple of weeks behind you, mid august. Debs is Ms July! I'm ok, been a much slower recovery than I expected, still tired and have trouble with an unpredictable gut and all the pain and unpleasantness that goes with it, but I'm getting there, enduring the lenalidomide, trying to eat properly and do normal stuff, but it is hard work…[Read more]

Hi James
Welcome to the site.
It,s my husband with Myeloma,he is in remission after ctd then vcd,and going to Kings this month to see if sct is possible,because he is on Myeloma X1 trials,he will be randomised either for treatment or no treatment.

At the moment we do not think SCT will be the solution,as his lungs were damaged with pneumonia…[Read more]

Hi Jet
you must be feeling pretty low at the moment its so hard for you that the transplant didnt work,have you got a brother or sister that could give you a good match. I am ok at the moment thats all any one can say I never had an SCT because my kidneys were so damaged. fingers crossed for a good match for you
Love and (((HUGS)))
jO X

Hi Bridget

Well it is the 4th and snow warnings are out,very cold with wind,but no snow,it would not surprise me,if this little corner misses it. Eve

HI jet
You have hit the 3 F???,see if you can work it out with out my help????

before you hit 50 the 3 F was something different.

Eve

Thank you all for replying

Slim has finished Velcade,but the complaint went in before we new he had remission,but that does not matter I am concerned for people who come after us.I wish I could put the hospitals reply on here,but I cannot not,but reading between the lines,it does not pay to go on trials,you will spend more time in the…[Read more]

Dear Jet
I'm so sorry to hear about your sct, I hope the Velcade works effectively for you.
Love Helen

Hi Gary
I'm with Wendy on this one, myeloma nurse specialist here on the site or at hospital might be able to explain more, does your sister see the consultant alone? If she is this confused she should have someone with her to ensure that there is no misunderstanding. High doses of dex can cause paranoid and depressive symptoms and should be…[Read more]

Hi Chris
I had complications which are resolving at their rate not mine! I do keep wondering if I've just turned soft but they assure me 'no, just everyone reacts differently' On Friday it will be 1 year since diagnosis day, and it has been very full on since the start. I have apparently been ' very sensitive' to all the drugs and only time will…[Read more]

Hi Bridget

Hope you are well. As I was reading your post I looked out the window and it was just starting to snow – very fine. Hope it stops as don't want to be snowed in like last year!,

Love Jean xx

Hi Marion

The reason I mentioned cc club,is lots of there places have lodges now,so no roughing it.We have a motor home and there sites are good.Follow you own needs,do not worry about your drugs,I am sure any place will help you.

Have a good holiday Eve.

Hi Peggy
There are some pharmaceutical cool bags available which keep drugs at the optimum temperature during travel etc, I had one at work a few years ago. It would not be impossible to find out from your specialist nurse and the pharmacy department you attend. They are VERY expensive. You might need to approach a local charity to see if they…[Read more]

Hi Marion

Just to answer your query ,I use to have a B&B,and have had all sought from guest in my fridge and freezer,most will help you out just ask on booking,if they say no,you would not stay anyway.
What is Aranesp EPO!!!!!!

If you like the Camping,have you thought about,booking through the Camping and Caravan Club,I would look at there…[Read more]

Hello Peggy
We have been away to a B&B twice this year one in Scotland and one in Swanage both times people have asked to keep medication in the fridge if you phone some of these b&b's or hotels they will tell you in advance if it is possible or you could hire a cottage they always have a fridge if you want to go abroad there is a cold pack…[Read more]

Hello dear Tom

I am glad you are well and I hope your transplant goes on for years and years so you will not need the extra bag
Love and ((hugs))
Jo x