First of all, hello everyone. Wow, I’ve been binge reading this forum over the last few days and I wish I had known about it at the beginning of my journey. There is so much helpful information here and people seem really helpful and supportive.
My journey started a year ago, when just after the Christmas holiday I started to feel unwell. I was tired and lethargic, I had the world’s worst cold sore and lumps appeared under my armpits. I booked an appointment at my GP and he gave me antibiotics and some cream for the cold sore. After a week or so I still wasn’t feeling much better and my fiancé told me to go back to the doctor. On the second visit a blood test was organised and i was told they would be in touch in about a week. Well first thing the next morning I had a phone call on my mobile from the doctor telling me I was anaemic and that he had booked a consultation for me at the haematology department of my local hospital. Anyway, long story short, after more blood tests and a bone marrow biopsy, I was was diagnosed with acute myeloid leukaemia. I’d never even heard of AML and struggled even to spell it. I am so grateful to my fiancé. If I had been single, as a typical man, I would have kept going until I keeled over one day. It was her insisting I go back to the doctor that saved my bacon.
I was swiftly admitted to my local hospital where I began a course of chemotherapy. At the end of the chemo another bone marrow biopsy revealed that the chemo wasn’t doing it’s job and I was told I would need a bone marrow transplant, which at the time was quite a blow. There followed another three rounds of chemo, this time the much stronger flag ida. Side effects included diarrhoea, vomiting and a very nasty urinary tract infection. About 4pm each afternoon I would get the shivery shakes. I believe its called a rigor. I think the nurses used to set their watches by it. All I know is it’s one of the weirdest experiences. You feel absolutely freezing, I would shiver so much the bed would shake and my teeth would be chattering. Meanwhile, the nurses would be pulling the sheets and blankets off the bed, opening windows and directing an electric fan at me, because in reality my temperature was climbing to the ceiling. Around this time I also lost my eyesight. Not totally but my vision would be blurred so that i couldn’t read or write and people’s faces would just be blobs. I was told this was due to the leukaemia. Fortunately, the chemo nailed it and my eyesight returned to normal after several weeks, but it was pretty scary at the time.
At the end of July I was transferred to University College Hospital London for my transplant. I have to say, compared to everything I had already been through, the actual transplant was quite straight forward. The hardest thing to deal with was the sense of isolation. Back home in Wiltshire, my friends and family were able to visit on a daily basis but the distance to London and the cost of transport meant they could only visit once a week. Fortunately, I was only kept in for about three weeks before being sent home.
Since then I have been attending regular check ups as an outpatient and things have been going well except for a chest infection in November which meant another three weeks in my local hospital followed by another transfer to UCH. I was afraid I might not get home for Christmas but fortunately I was discharged a week before the holiday.
Compared to some of the posts I have read on here, I seem to have escaped the worst effects of GvHD except that recently my eyebrows have fallen out which I have to admit has been causing me some distress. I had normal male pattern baldness in my twenties, I’m now 54, and have been shaving my head for years, so losing my hair was never going to be a problem. It just seems cruel and ironic, that having gone through five rounds of chemo, this should happen now, especially as I am due to return to work at the end of next month and could do without the added social anxiety of feeling that I look different.
Anyway, that’s my journey so far. As I said at the top of this post I am enormously grateful to my family, and in particular my fiancé for all their help and support. As for the medical teams both at Great Western Hospital in Swindon and UCH in London, I owe them I dept I can never repay. While of course I would never have chosen to have a serious illness, the upside is I have met the most talented, dedicated and caring group of people I could ever wish to meet.
Wishing all the best to my fellow forum members.
Nick.