I hope others will find this useful. I am writing a diary to record experiences and observations dealing with the NHS on behalf of someone with Myelodysplastic syndrome (MDS).
My father was diagnosed with Very High Risk Myelodysplastic syndrome (MDS) in October 2023. According to the leaflet, the prognosis is for survival being between 3 months and 24 months. He is being looked after at a specialist NHS university hospital and his consultant specialises in haematology for geriatrics (the elderly). They work as part of a Multi Disciplinary Team, which meets weekly. He was started on mild chemo (Azacitidine injections in the stomach) in January 2024 but this was paused in February 2024 when he suddenly got urinary retention. We thought this was caused by constipation, which is something that developed over many months, probably because of his lack of food intake and lack of mobility. During the hospital admission they found his prostate was somewhat enlarged so they started him on Finasteride.
I wasn’t happy with them stopping chemo entirely so soon after they had started treatment so I asked for a second opinion from UCH as they are one of the world’s leading experts in Myelodysplastic syndrome (MDS). We were assigned the head of department. We met with him in April 2024. He agreed it was too soon to stop chemo so he wrote to our consultant to suggest half dose Azacitidine for fewer days.
The chemo resumed. Then Dad lost weight and was even less mobile so again chemo was paused. We went for a follow-up appointment at UCH in September 2024 and my father was prescribed Megestrol to see if it stimulated his appetite. It does seem to have stimulated my father’s appetite as he started to eat more.
My father became lethargic and weak again in early December. Chemo hadn’t been re-started. The consultant said he was on Supportive Care, meaning no chemo but regular blood tests to see if he needed a blood transfusion.
These appointments for blood tests had been every two weeks but this then lengthened to every six weeks. I felt this was too long a gap, which was true as the blood test then showed haemaglobin of only 72. I think some of the weakness he feels must be due to this low haemaglobin. He was given one unit of blood. This time the weakness continued and he ended up being admitted in December 2024 with sudden urine retention again. He was found to be constipated again. This was gradually cleared. He became a lot more alert and interested in good again a few days after admission. It is so incredible to see how badly affected a person can be by constipation.
During this admission they had to catheterise him as the urine retention did not stop despite clearing the constipation. The scans showed that the prostate is now “large” so they have started him on another medication, tamsulosin.
He is home again and had a scare last Sunday where the carers thought the catheter had been pulled out. I called the District Nurse who came to see him within a couple of hours. The catheter was in place but the catheter tube that connects to the tube with the bag had come loose. That was a relief because my father finds it incredibly painful to have the catheter put in.
More in the next post. I hope this will be useful for others. Be strong and look after yourself.