On 9th September 2025 I started with a nosebleed, something not unusual as I was recovering from a bad cold, but this time it continued throughout the day, stopping for short periods. I rang 111 and they advised me to contact my doctor the next morning, and he sent me straight to the hospital to have the bleed cauterised. I expected to return home and nurse the rest of my cold for a few days. Instead I spent the next 10 days in Pinderfields hospital in Wakefield.
My haemoglobin was half what it should be, and my platelets less than 10% of what they should be. They put a dressing in my nose to stop the bleeding, but they could not cauterise it until my platelets were high enough. So. I had an infusion of platelets and on the third day ENT took the dressing out and cauterised the blood vessel in my nose that was causing the problem. They then handed me over to haematology, who kicked off a series of tests, including an MRI scan and two bone marrow aspirations. After more platelet infusions and blood transfusions I was discharged with the firm instruction to turn up twice a week to have a blood test and if necessary be given platelets of red blood cells.
On the 27th September a consultant told me that they were waiting for some tests on my bone marrow to complete, but they were thinking it was MDS. I had never heard of it. He explained it was a rare blood cancer, and that there were a range of treatment options depending on the outcome of the genetic tests. He was reassuring, but could not give me more information at that point.
I entered a new world that I did not know existed. Twice a week I turned up, had blood samples taken, and if necessary I was booked in the next day for an infusion of platelets or, less commonly, a transfusion of red blood cells. Over the last four months it has settled to platelets once a week and red blood cells every two or three weeks.
Unfortunately the two marrow samples did not produce conclusive results, so I had a third. In November the consultant said he thought I would be eligible for a stem cell transplant, which is the only cure. At 70 I was at the top end age wise, but I had no conditions and was reasonably fit. So, on the 16th December I had my first consultation at St James’s hospital in Leeds where I was told all about a transplant. They took lots of blood samples and said they would look for a donor. The genetic tests confirm I have MDS with two chromosome defects and though there are many risks a transplant looks like the best option for my condition (for others there are many other options, as MDS arises in different forms which respond best to different treatments).
’ve probably had MDS for quite a while, maybe years, but until September I was asymptomatic. Up to the nose bleed I had very little indication of any problem. I occasionally got out of breath walking up hill, but that was often linked to a cold, and so I did not contact the doctor. I went dancing two or three times a week, walked regularly, and went to the gym twice a week. In retrospect, I can recognise a dropping of energy levels, but nothing unusual and I was still keeping up with others on the dance floor with no distress.
So here I am at the start of 2026, wondering what next.
The plot continues ….