This website aims to catalogue our journey with MDS since diagnosis and along the way hopefully provide encouragement to others who are starting on their own personal journey. What we are not are experts on the condition, but MDS is living with us 24 hours a day. I hope you find this encouraging and helpful. I have tried to set out resources I have used and found helpful and hope that these are the same for you too.
In August 2013 I went to my GP with fluid on my leg. In very diplomatic GP language, he told me I was overweight and drank too much. I have to admit at over 20 stone I was not in a position to disagree! He said he would do "some bloods" and to return in a couple of months and that I should change my lifestyle.
So I joined slimming world and the gym, blood tests showed signs of anaemia and were repeated again before Xmas by which time I had lost over 2.5 stone. Results were similar and whilst I was encouraged to carry on my weight loss, tests were repeated with a view that a referral to haematology would follow, which it did in the February. Consequently after more tests and a bone marrow biopsy I was diagnosed with MDS on August 8th, Intermediate 1. I had still been going to gym 2/3 times a week and had lost 4 stone so the diagnosis came out of the blue.
To say we were stunned is an understatement, the world stopped momentarily as we tried to comprehend the diagnosis and implications for us both. Fortunately I was allocated a specialist haematology nurse as a point of contact and she was able to talk through the implications and the fact that I had already been referred for a stem cell transplant. She has remained a consistent source of advice and support on the journey MDS is taking with me.
It is tricky to know how personal to be and I am sure that this will change over time as both the MDS changes and I change in terms of coping with the challenges ahead.
My Diagnosis and Care
There are a number of classifications of MDS and at Diagnosis I am MDS Intermediate 1. I was diagnosed on 8 August at Haematology Department in Queen Alexandra Hospital in Portsmouth and they along with me are responsible for my day to day care. I have also been referred to University Hospital Southampton for a stem cell transplant.
As a starter I am very happily married to Sally and have two wonderful step sons who are all now part of the journey I am taking. My mother is still alive and lives some 300 miles away
I work at Bracknell Forest Council as Director of Adult Social Care, Health and Housing although with effect from 5 Jan I am relinquishing my substantive role and focusing on a range of projects for the Council, allowing me more flexibility with my treatment.