My diagnosis
“I really didn’t know anything about leukaemia or its symptoms. I had been working in the motor industry, delivering and inspecting cars, and my job involved small amounts of walking. In early December 2022, I started feeling exhausted all the time. I was falling asleep between jobs and had a terrible chest infection that had me waking up from sleep unable to breathe. At times, I felt scared I might die, it was so difficult to catch my breath. It was becoming increasingly difficult to walk even 400 yards, without having to stop four or five times to get my breath back. My wife started to get concerned about what was happening to me.
I went to see the GP who gave me a course of antibiotics and some medication to reduce the phlegm on my chest. This seemed to help a little, but I was still very tired. It was coming up to Christmas, and as a self-employed person, I really couldn’t afford to take time off work. I am normally quite an active guy – I play golf regularly, don’t smoke and consider myself reasonably fit. But I ended up having to take a week off work, during which time I slept for three days and barely got out of bed.
Over Christmas, I was still not right. I hardly joined in with all the celebrations and barely drank. My wife couldn’t understand what was up with me. I was just so tired all the time.
On 3rd January, I went to see the GP again. This time I saw a different doctor and she did blood tests then and there. I didn’t think too much of it and went home. I remember being too exhausted to take down the Christmas tree and lay on the sofa watching my wife putting all the decorations away. We joke about it now, but at the time, she wondered why I was lying around watching her do all the hard work!
That evening, my 13-year-old daughter had her dance class. My wife took her there as I was again exhausted. I lay on the sofa with some cheese and crackers and a small glass of wine, watching the darts final. At about 9:20pm, there was a knock at the door. I assumed it was my daughter arriving back from dance. But when I went to the door, there were two police officers standing there. They explained that the doctor had been trying to reach me all day, but because I had not seen any of the texts and had not responded, they had been sent to do a drive past to check that I was okay. They told me that my blood tests that morning had revealed there was a danger to my life – I should pack an overnight bag and they would accompany me to the hospital straight away.
Of course, this was all a huge shock. But when I arrived at A&E, they were expecting me. I was seen by a doctor who explained that my white blood cell count was through the roof and my red blood cells were really low. Effectively they were attacking each other. I had a cannula put in, was placed on a drip and was given a blood transfusion. The following morning, I underwent a bone marrow biopsy. A day later, on Thursday 5th January, the doctor came to see me and told me I had AML.
I really knew nothing about leukaemia at the time. My only awareness, being an Aston Villa fan, was that Stiliyan Petrov had it. Of course, it was a very frightening diagnosis. Being told you have cancer makes you fear the worst and all sorts of thoughts go through your head. The doctor offered to call my wife and explain everything to her, and it was hard to hear her crying over the phone.”
Treatment
“I was put in isolation and by Saturday, I had started treatment. I spent three months in hospital, having three rounds of chemo. The first few weeks were definitely the hardest as it was really tough to be on my own. My wife came to see me every day, but I was not allowed any other visitors and could not see my daughter for a month.
I was told all along that I would probably need a bone marrow transplant and while I was in hospital, things were being put in place to make this happen. My siblings were tested and fortunately, both my brother and sister turned out to be a 100% match for me. It was decided that my brother would be my donor. I came out of hospital towards the end of March, but there was still leukaemia in my body and I was told a transplant would definitely be needed. My consultant told me that they ‘would throw the kitchen sink at me’ to get me better.
I spent four weeks at home, visiting the day-unit three times a week for transfusions, antibiotics and antiviral medication. Then on 27th April, I went back into hospital to start the chemo that would prepare me for my transplant. The isolation was tough. I could only see one person for one day for one hour. My transplant took place over two days at the start of May – I was given 13 bags of stem cells. I was warned that I would probably get infections and have high temperatures, so when these things happened, I wasn’t too surprised by them – although they really knocked me sideways. By the time I left hospital after five weeks in there, the doctors were happy with my progress, but warned me there was still a long way to go.
Initially, there were a few problems and I was in and out of hospital a couple of times. On one occasion, my kidneys stopped working and I had to have my drug dosage adjusted a few times to get things right. But I know that I am pretty lucky. By mid-summer, I was in remission and cancer-free. I now just see the doctor once a month.
I will be eternally grateful for all the medical care I received at every level, but I also couldn’t have got through this without the love and devotion of my wife and daughter, and the support and encouragement from my brother-in-law. They were my only link to the outside world during my darkest days in hospital. Being surrounded by people that care really is vital to a positive mental attitude which definitely helped me in my fight against my diagnosis.”
Living with leukaemia
“I have recently started working again, although I have changed jobs to something a little less physical. I’m back in the motor trade, but for now, I am working part time in a role that involves sitting behind a desk. My doctors
explained that I should really be off work for 12 months, but I feel well enough to be doing something and I need to work for financial reasons. It is definitely good to be back in the world of work, even just for three days a week.
I had wanted to get a dog before I became ill because my beloved Westie, Harley, had sadly passed away. Once I was recovered and back home, I made it my mission to do just that. And I ended up with not just one puppy, but two! Given everything I’d been through, I just decided to bite the bullet. And Cavachons Teddie and Beau have brightened up our world!
I have always been very positive and always knew that I was going to fight this and get through it for my family. I have been strong all along and mentally, I feel stronger now than ever. The whole experience has 100% changed me though. My outlook on life is very different these days. I am much calmer and will not allow myself to get stressed or angry. What’s the point when you can’t change what you can’t change?”
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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