[MollymooParticipant]

Hi All
I don’t quite know where to begin but I guess letting you know that we are presently living in Bulgaria but will be returning to the Uk on 8th April. My Husbabd was diagnosed wit MMSeptember last year and 8 days later was recieving tretment, CyBorDex (you might refer to it as something ele. He was told that he had stage 3 IgA and that due to his age of 68 he would never have the option of SCT. Things were going great and after 3 lots of Chemo he was told that he was in partial remision and was ready to go onto maintenance therapy. At Christmas time he got pneumonia and that made him very ill and no sooner that cleared up he caught H1N1 Virus (Swine Flu) and that just about finished him off. He was rushed back into hospital and they got to work on the swine flu but routine checks showed massive recent changes in his heart. He was transferred to a heart unit and tests have shown that large deposits of Bence Jones Protein have been gathering in his heart and the walls are thickening and stiffening. At the end of all this they gave him heart meds ands put him on Chemo tablets at home that he takes every Monday, Wednesday and Friday. The Doctors parting words were that he is now in very good partial remission and that he has a lot of months to live.

We are now at a stage where I have booked flights back to UK where we will stay with my brother and throw ourselves on the mercy of the Doctors and the state. It is terrifying as we have been out of the counrty for 6 years. I just hope that as he is a pensioner (I’m 55) that they will be able to help him. It would be so wonderful to understand fully what is going on with this diesease and get the help and support that we so desperately need.

Does anyone know what kind of benifits we may be able to get help with and where to start as soon as we get back. Thanks for reading.

[HelenRParticipant]

Hi Molly,

Welcome to the site. Sorry you’ve had such a ride of it so far, but I think you’ll have a very positive experience with the NHS and myeloma. Obviously I can’t speak for everyone but in general I get the impression people feel we get excellent care – I do.

On financial aspects, get in touch with Macmillan – you can book a call with a financial adviser who will talk you through all the benefits etc by phone or in person. They also send you all the paperwork about it. I don’t want to start trying to say what I think there is as I might mislead you and I’m not up on all the post-65 stuff etc.

Good luck and keep in touch!
Helen

[HelenRParticipant]

PS and I forgot to say more generally, phone Maggie/Ellen at Myeloma UK who have the full picture on treatment etc – there will I’m sure be various good treatment options.

[eveParticipant]

Hi Molly

I would be very careful and get some expert advice on any form filling you have to do,CAB should be able to talk you through this.

As you have been out of the country for 6 years,I think you will have to prove you are not a health tourist,but saying that I take it your husband has put many years of tax and Stamps,which should entitle him to health care and support!!!!
Try going on the net to find out what your position is???!
I do know when Slim claimed Attendance Allowance one of the questions was had we been out of the country for more than 3 months in the last year..hope some one can help you.Eve

[MollymooParticipant]

Thanks for your reply’s Eve and Helen. I will keep you informed as to what happens when we get back home. Hope you are bothe doing fine as well. xxx
x

[CarolsymonsParticipant]

Molly
I am in London and the care I have received from the NHS over the last year has been AMAZING!

Carol

[MollymooParticipant]

I am starting to feel better about this already. He is given good treatment over here in Bg but that’s where it ends, there is no after care, Macmillan or equivelant so we are pretty much left on our own, learning what we can about the disease from Google. It was when he had the Swine flu and couldn’t breath that brought it home to me just how alone we were. I had phoned his Oncologist and had the phone put down on me 6 times by a member of staff before I actually got to speak to her then it was a 4 hour journey to Plovdiv, not ideal in an emergency. Can’t wait to get back now. Thanks again.

[jmsmythParticipant]

Hi Molly

Sorry you had to join us and I’m not sure it’s relevant but Frank and I lived I. South Africa for 10 years 3 of our 4 sons where born there. We came home back to Belfast and it took some time for Frank to get a job. We got all benefits and child allowance etc. as Eve says get advice and hope things go week

Jean x

[eveParticipant]

Hi Molly

I have just returned from the Royal Marsden were a man named Stuart introduced him self to me,he lives in France and his wife is treated at the Marsden !!!!

He said if you want any information to get in touch with him,he will gladly speak to you!!!!if you put in search the name Stuart,it should throw up postings of his,even put in France,then you just tap on his picture and it will go to his profile and you can send a private message ,hope this helps.Eve

[MollymooParticipant]

Thanks Eve, you are very helpfull, I will contact Stuart.

[Author]

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