I caught Covid over Easter 2022 and never fully recovered, ending up with pneumonia and a week long stay in hospital and having to have my right lung drained. Following this episode of ill health, I had frequent blood tests via my GP surgery. In May 2023, my blood results were all over the place and I was asked to go back for further blood tests and urine samples. I was informed I had anaemia and was prescribed iron tablets. This was nothing new – over the years, since I was about 40, I had been prescribed iron tablets or folic acid from time to time.
Later that month, I suffered from tendonitis in my right ankle. I attended A&E where the doctor told me they were more concerned about the fact that I had anaemia, given my age and the fact that I was male. However, no underlying conditions were indicated and I continued with life as best as I could, despite experiencing fatigue, drained colour, tiredness, mood changes and muscle pain.
At the end of May, I started a new job, but I was beginning to struggle with my fatigue. I also noticed that I was feeling lightheaded and felt I could drop at any point. I continued to engage with my GP surgery. However, I was only offered telephone consultations and desperately needed to see someone face to face. By now, there was also a change in my appearance: I was very pale in colour which my wife, family and friends all noticed. But we all felt helpless – it was clear something was obviously wrong, but blood tests were not indicating what!
Over June and July, I started to struggle with my walking as I was getting out of breath and it was difficult to walk up the stairs. I became snappy towards my loved ones and my tolerance levels were non-existent. I stopped wanting to go to the gym which I had always been passionate about. I could previously do 5k in under 30 minutes, as well as spin classes and swimming 30/40 lengths at a time. My wife started to explore options for me, including having a B12 jab at our local gym. I turned up for this appointment at the end of July. The jab was given by a nurse. When we walked in, she took one look at me and advised me to see my GP. I explained the whole situation to her and that I had been trying to get a face-to-face appointment. I also confirmed that the GP had diagnosed me over the phone with asthma, based on my symptoms, saying there were hundreds of people in my position thanks to Covid.
My wife then contacted the GP, stating we had seen an independent nurse and had been advised that a face-to-face appointment was urgent. My wife came along with me. She would never normally attend GP appointments with me, but was greatly concerned that something was wrong and she requested the GP examine me and send me for additional blood tests that had not been previously carried out. The doctor was very thorough, requesting stool and urine samples and urgent blood tests at the local hospital. On 3rd August, I attended the Lister Hospital before going to work to have blood taken. By the end of the working day, I got a call from the GP surgery, asking how I was feeling. I explained that I felt exactly the same as I had done for the last eight weeks or so. I was informed that my haemoglobin levels were at 40 and I needed to make my way to A&E as soon as possible as I would need to have some blood transfusions. I was admitted the same night.
I was seen by the haematology team the next morning who confirmed there was a possibility that I may have leukaemia. I was given a bone marrow biopsy and ended up remaining in hospital for several days, receiving four units of blood. I returned to work the following Monday.
A few days later, I was back at the Lister’s A&E again. I was triaged before being taken to SDEC (same day emergency care) who advised my haemoglobin numbers were low and they planned to give me a couple of units of blood before discharging me. I asked whether my results had come back regarding my bone marrow biopsy. The Doctor asked me what I knew and I confirmed I was waiting to see if I had leukaemia. I was told that the haematology team were best placed to discuss this with me… which made me think I probably was going to get a leukaemia diagnosis.
The haematology team were unable to see me that day, so the doctor agreed to admit me so that the haematology team would visit me on their ward rounds the next morning. It was then that my diagnosis of CMML was confirmed. Thankfully, I was also told it was treatable which reduced a lot of anxiety for me and my wife. I remained in hospital for more blood transfusions and was prescribed chemo tablets for the time being.
I was referred to the MacMillan Cancer Centre at UCLH where I met my consultant. My wife and mother came along with me to provide emotional support and they also wanted to understand the condition and the plan for my treatment going forward. I was told there were no trials suitable for me due to my age as this type of leukaemia would normally be seen in someone in their 70s. They would normally be medicated which would give them four to five years. This was shattering to hear – the realisation of how precious life is hits you straight in the face.
The plan for me was that I would be admitted for extensive chemo, along with a stem cell transplant, in the hope that the outcome would result in me being cured. When I heard that, I had a much more positive outlook and felt confident we could get through this with the desirable outcome. On 7th September, I was admitted to hospital to start my five days of intensive treatment. So far, it has gone well, although I have experienced some side effects, including blood spotting and swelling in my legs, shedding skin and various infections which left me feeling run down, lethargic and unable to eat or drink. My wife and mother are taking turns to stay with me in hospital for emotional and physical support. I hope to return home at the beginning of October for a week or so, before returning for the second round of chemo in the lead up to a stem cell transplant once a suitable donor is found.
I do wonder whether I may have got a diagnosis earlier, had I been able to get a face-to-face appointment with my GP. However, once I was admitted to hospital, they got to work straight away fixing me up, having the bone marrow biopsy, and I am very thankful for the round the clock care and dedication I am receiving. I will be forever grateful for the care and support and through this experience can clearly see the humanity for others that the UCLH team have.
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