I deduced it had to be poor iron retention...

I suppose my story started 3 or 4 years ago when my wife Alison and I were living on our narrow boat and cruising around the country's canals. I had a blood test for something – no idea for what now – but it threw up that I was a bit anaemic. Because I wasn’t a regular patient of the practice they weren’t inclined to do anything about it. Nor did they alert my home practice in Cornwall apparently.

Fast forward to Feb 2020 and by now living back ashore just outside Wadebridge I asked if I could get a gym referral to get fit because I got out of breath easily and was overweight. I got one, plus 12 sessions with a personal trainer, which finished just before lockdown. My fitness level had increased and was maintained by daily walks with the dogs.

In September 2020 my GP asked for another blood test due to me once again getting breathless on short walks and feeling tired at times. A telephone consultation let me know I was anaemic with a Hb of 87 and he suggested I call in at the start of the following week. The weekend saw Google being hit with regards to anaemia and I deduced it had to be due to poor iron retention because I had a good diet.

The GP quickly disabused me of that and told me I had MDS and he would refer me to haematology at Royal Cornwall Hospital Treliske. Once again Google was used and MDS UK was found. After I contacted them, Sophie rang me and we chatted for over thirty minutes during which I learnt a lot about what MDS was.

I chose to go for gold and said I’d go for the Stem Cell Transplant

My consultant appointment happened very quickly and Dr Adam Forbes was impressed the GP even knew about MDS but needed a biopsy to accurately say what I had.  That showed I had MDS EB – 2, 11% blasts.

What did I feel about having a life threatening illness?  I was sad that my expectations about living to a ripe old age, the same as the rest of my relatives, may not happen.  As far as I recollect I didn’t feel angry or bitter but I decided I would take whatever happened and deal with it as it happened.

I was then passed to Dr Pottinger, also at Treliske and we discussed options.  At 73 there weren’t many options available – 2 to be exact.  One was to have azacitidine and the other a stem cell transplant.  To my way of thinking that boiled down to delay the onset of leukaemia and then die early(ish) because I would then be too old for Stem Cell Transplant or go for an Stem Cell Transplant with all the possible problems.  I chose to go for gold and said I’d go for the SCT.  I had a couple of blood transfusions in November.

Next appointment was with Dr Hunter, the SCT consultant at Derriford hospital Plymouth, in January 2021 who did a lot of tests including checking my mental state and said I was suitable for a transplant.  They found around 80 possible matches straight away.

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I am optimistic by nature and was told whilst in hospital that a positive attitude goes a long way to aid healing

Late February saw me as an in-patient at Treliske for the first of two episodes of chemo as part of a trial and I stayed for just over five weeks, mostly in isolation.  Three infusions of chemo on days 1, 3 and five and then monitored to see what happened.  The side effects I got were very small - a mild mouth problem for a couple of days, a rash which did nothing other than discolour my skin and one infection which was quickly hit with intravenous antibiotics.  I felt like a bit of a fraud really because I didn’t feel unwell, and other than when I had the infection seemed quite OK.

At this point maybe a little more about my philosophy of living would be in order.  I have a belief that there are many things in life I have no control over so once I’ve done what I can to minimise their impact upon me I let them go and move on; my MDS is one of those things.  I trust that if I do all that is expected of me and that the medics do their part, the rest is in the lap of the gods.  I live with what hand I am dealt and only deal with stuff one day at a time. Yesterday has gone, tomorrow isn’t here so I can only deal with today’s issues.  I am optimistic by nature and was told a few times whilst in hospital that a positive attitude goes a long way to aid healing.

Around the middle of April I was admitted for the second round of chemo and was allowed home a few days after the third infusion. I came out of Treliske after that lot of chemo earlier than I expected due to being in remission – still not fully understanding what that term means.  On the 2nd May I felt a bit disoriented so rang the 24 hour neutropenic line and was told to get to A&E, whereupon I was admitted with an infection and spent nine days back inside.

Between then and now I had one lot of bloods and one of platelets with my Hb levels holding their own and the others getting better.

On the 1st July I get my picc line changed for a Hickman line and go into Derrifiord on the 7th July for pre STC chemo etc, with the transplant taking place about the 13th/14th.  My donor is a 32 year old lady from Germany and we have a 10/10 match, even down to her having the same viral imprint as me. My humorous side nearly got the better of me when I heard this, but I managed to rein it in because I’m not sure the consultant would have appreciated it.

Stay strong folks.

Please do send us your story – whether you are a patient, family member or friend:
Email it to Info@mdspatientsupport.org.uk, or call our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!

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