Hi Ed
Im a carer to my wife who was diagnosed in 2008 at the age of 53, and I'll give you my spin on life with MM. It may be helpful if I say that at dignosis my wife was in hospital and unable to walk, it was obviously serious but we didnt know how serious. When a lady doctor came to give us the dignosis she simply said "you have MM, make no plans, think only of yourself, I will send a psychiatrist to see you". This obviously terrified the life out of both of us, but looking back we can laugh about it now as the thoughtless words from a doctor who really didnt understand MM. (We found out much later she wasn't a haematologist.) Luckily on trawling the internet I found MMUK, and their help and advice was so valuable in those early frightening days. They were able to talk to us about MM and make it very clear that whilst it is currently incurable it is most certainly treatable.
So over three years later she is in full remission, under the care of a great hospital and medical team, and we know that when relapse occurs then we shall move on to a new treatment, and that new treatments are being worked on all the time.
What advice would I offer you? You mention counselling, well give it a try, as if it helps you then its a good thing. I have no idea what hospital you are at, but in your shoes I would seek the best medical team you can find. That of course may mean some travelling, but MM is a very individual disease, and as such a haematology department who have huge experience of MM would for me be the best option. ( The other aspect of that is you would meet along the way other MM patients, all of which will make it less of a frightening world.)
The carers role is a difficult one, ( but very different from the patient), and I guess every carer thinks differently. For me I try to sympathise, encourage, be strong as much as I can. Equally there times when you need to be tough with your patient, MM can become all consuming and "take over" your life. ( We solved that by taking on a building project, but I certainly would encourage you to do something together that takes you away from MM.)
You say you live in Hampshire, which is an area I know well. If it helps, and you would like any more advice message me privately. will happily do what I can to help.
cheers
Stuart
