[sue013Participant]

Hi Yvonne

Thank you and yes I miss him every day. He put up a very brave fight and he responded to every drug but not well enough to stay in remission for more than a couple of months. The best he got was 17 months after his SCT but quite a lot of that time was spent recovering from it. I know exactly how you feel, I saw it with Dave and I was no different, all you want is to be ok and just enjoy life like it used to be. I had no family support as we didn’t have children and all our close relatives had died so it was pretty much me and Dave fighting it together. I’ve had lots of support from my friends since Dave died, but all I want is for him to come back, how stupid is that.

If I’m right about Dave having MGUS for so many years you could be the same and it may never happen, try to enjoy every day that you can. I hope you have lots of support. I know what you mean about work, people would ask me about Dave but when I tried to explain it was obvious they had no idea at all.

My email address is susanconstantine@talktalk.net.

Take care

Love Sue xx

[sue013Participant]

A picture of us taken about 3 years ago. I hope I’ve put the picture on ok, can’t tell until I post it.

[sue013Participant]

Hi Yvonne

Dave was my soul mate for over 30 years, I’m lost without him. I’ve been reading this site since he was diagnosed in 2009, always hoping to find a cure. We had never heard of Myeloma either, it came as a great shock. Dave’s GP should have arranged an X-Ray with the back pain going on for 3 months and since this did not happen for him they have changed their rules and if anyone presents with back pain for 6 weeks they are now automatically sent for one. When Dave was diagnosed he already had 2 collapsed vertebrae, then 2 more collapsed shortly after and in the end it was 6. Maybe this wouldn’t have happened either if we had known beforehand he had MGUS, there’s so many different ways of looking at this disease.

I’m glad they’re monitoring you and looking after you, in my opinion if MM does kick off the sooner it is caught the greater your chances of a good long remission. Dave started with CTD, then Velcade & Dex, then Revlimid and lastly was on a trial for Pomalidamide at St James’ Hosp in Leeds, the last drug destroyed him but he persevered despite the terrible side effects and it did give him another 11 months.

You’re the first person I’ve chatted to on this site and it’s been a pleasure and I’d love to keep in touch with you and see how you’re getting on.

Love Sue xx

[sue013Participant]

Hi Yvonne

I do think you stand a far better chance of a better response to treatment if you are being monitored. I say this because a friend of Dave’s was diagnosed with MGUS by a routine blood test and
when the Myeloma became active he lived for over 10 years with the treatment. I just look at it that
we had 9 years worry free but maybe if Dave had known he may still be here with me today, I miss him so much. I know exactly what you mean about the dreaded visits to the hospital, we used to dread them in case the drugs had stopped working too, it was such a relief to be told everything was fine but, when the news was bad we came home with heavy hearts wondering where next. I hope your MGUS never ever develops into Myeloma.

Love and hugs to you too.

Sue xx

[sue013Participant]

I think my husband had MGUS for at least 9 years. I noticed one day that he had lost height, he was at the time on painkillers for Spondylitis, also he used to get one cold after another. He never had blood tests done so I will never know. He started having trouble with his bladder 9 years later and was intermittently getting chest pains when walking uphill, he was 59 years of age by this time. He had heart tests and all was well!! Also he was started on treatment for irritable bladder and this seemed to work. Another few months passed and he was playing golf when he hurt his back. He paid numerous visits to see his GP who decided it was a muscle strain and just kept giving him more painkillers. After approx. 3 mths my husband could stand the pain no longer and we went to A & E and he was admitted. The rest is history, MM was diagnosed. Dave managed to fight this disease for over 5 years but he died last September. In many ways if Dave did have MGUS I’m glad he didn’t know because it would have been watch and wait for 9 years. I’ll never know but looking back all the signs of MGUS were there from reading a lot of the posts on this site.

Sue

[sue013Participant]

So sorry Rosie I also lost my wonderful husband to this terrible disease on the 15 September after a 5 year battle and I can’t believe he’s gone either, miss him so much x

[Author]

Posts