Sylvia R

Michael, my husband, Aged 66 was diagnosed with Myelofibrosis in March 2014

He had a Bells Palsy episode in 2012 and was admitted to hospital as we thought it was a stroke and he has had headaches ever since. The hospital said he had a low platelet count and mentioned Thrombocytosis in a letter to his GP when asking them to monitor his bloods.

2 years on, we moved north and our new doctor continued with Mike’s investigations; a bad back, constant headaches, weight loss and fatigue. In March 2014, out of the blue, Mike was asked to go for a bone marrow biopsy after which Myelofibrosis was diagnosed. The haemotologist, fairly matter of fact said; ‘it’s not curable and something that will stay with you for the rest of your life’ and we were given a Macmillan and Leukaemia leaflet. ‘So it's cancer is it?’ Mike asked, seeing the Macmillan logo, ‘how long have I got?’ ‘ It’s a rare blood disorder and something we will monitor every three months and there is no imminent threat’ answered his haematologist.

Not overly concerned, we toddled off home where I read the leaflets and hit the internet; the word "cancer" hit me! Panic set in. I had no clue what Myelofibrosis was. I hadn't read the leaflets in the doctors and only realised the severity when I got home.

I asked Mike if I and my sister could have his permission to join support groups on his behalf. Mike said; ‘look just get on with it and do whatever you need to help me live longer’. Mike isn't a big talker but I knew by him saying this he was quietly worried. I said, ‘ok let me and Maggie do the worrying for you, you just do as we say’ and that was that as far as Mike was concerned.

MPN Voice is where I gained my understanding and strength. Unless something personally affects you or your family, one is totally oblivious and why shouldn't one be? I realised just how many people had ET, PV and MF and the health unlocked forum with my constant barrage of questions and calming answers from Maz has helped me enormously. I got a buddy who, although specialised in guiding people through bone marrow transplants, was of great initial help.

I would like to pass on this advice and say ‘don't panic’ even though I think one naturally does. Read EVERYTHING on MPN Voice, read people's stories, EVERYTHING! Arm yourself with questions as you go along until you are ready for your next appointment with the haematologist.

For definite, no two people react the same to the drugs they give you so what works for one may not work for another and this is where the doctors know best. Listen, write down what they are telling you, take in your questions and don't be shy in asking. Ask about transplants, ask about clinical trials, research for yourself and join in the forums. There are a lot of people going through what you are and to know you are not alone and that someone is at the end of a blog is a massive help emotionally. Do not take everything you read too seriously and definitely don't panic!

With so many questions, I apologised at our first "watch and wait session" with the consultant. He said ‘don't , it keeps me on my toes. So many people just listen and do what I tell them so it's nice to have someone who challenges me!’

I asked MPD Voice if I could be a buddy but the answer is no for the moment as we are only just getting to understand about and deal with Mike’s condition. We have a long way to go Mike and I, but now I know what to look out for, we are on the road to a happy and hopefully long life together.

Anyone reading this, I wish you my very very best with whatever it is you are coping with and remember, you really are not alone.

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