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Going back to 2007, I noticed I was struggling to see house numbers as I was a mobile tyre fitter. I went to the optician’s and thought I might have smoke damage from a BBQ we had weeks before. He advised me to go right to the hospital for an eye test as he could see there was something there, but he wasn’t sure (later when I went back to say thank you, he admitted he was worrying but as it wasn’t his profession, he couldn’t advise me more. The staff in there still know my story and remember that day I went in).
When I arrived at A&E, they gave me eye drops of yellow dye to have a closer look behind my eyes and noticed there was something wrong: bulges in the blood vessels and scarring. I had a 20-minute wait while they did more scans and investigations, and I was rushed into different rooms, passing all the people waiting in room after room of the eye section.
I then got a private room in ward 7Y of the Old Royal Liverpool Hospital, and I was taken up to the top floor and put on a blood cell splitting machine. They noticed the white blood cells were doubling the red blood cells and blocking my arteries. I also had a lump on the inside of my leg that I was embarrassed to mention, but this also played a role in my diagnosis. I was diagnosed with chronic myeloid leukaemia (CML).
I had my bloods filtered three times and had a day’s rest before doing a bone marrow test, which involved having a hand drill out into the bottom part of my back. I didn’t enjoy this process and it was very uncomfortable but needed doing.
While I was recovering, I rang my boss and asked him to replace me as I was going to be recovering for a couple of weeks and I was stressing about work. The hospital staff were very good to me, and I even got a nick name, “the owl” because I didn’t sleep. I had had this issue for months anyway so it was normal for me to not sleep, but looking back, it was part of me being sick, I just didn’t know at the time. I was so concerned about my bills and work and family that I didn’t even consider me. There were a couple of occasions where I would get out the shower and fall asleep on the floor, but I just put it down to the cold-like feelings I had. This was weeks before I went the hospital.
I was discharged from hospital after just over a week, just in time to see my grandfather before he passed away. I went back every week for bloods tests and luckily everything went okay, fluctuating but still on the right pathway. The leukaemia stayed low and I continued working. While I was on the ward, I received medical treatment for my CML. I was originally put on imatinib but because of the side effects, I was moved onto nilotinib in 2009. However, the side effects again become too much and made me really sick, so I was put onto the third-line treatment dasatinib in 2022.
I didn’t really think of how serious leukaemia actually was until a couple of months later when some of the people I had been talking to were slowly passing away due to the seriousness of this illnesses. It did play on my mind quite a lot on how serious my medication and illness was, but I used work to take my mind off of the situation.
It’s only a few years later that I have started become more tired and feel the cold more and I have cold-like symptoms like my joints hurting and more. Years down the line I’m still trying to adapt.
It’s 2024 and the hospital are looking at changing my medication again due to me getting migraines. I still go for blood test every four weeks. But over the last years, I’ve only been going for blood tests every three months which has been fluctuating. I have also now developed high blood pressure from the side effects of the treatment I’m receiving, but I feel it’s a small price to pay to keep me alive. I am on tablets to help this, and test results show that as I’ve come out of a stressful job this has helped with keeping everything healthy and on the right path.
Leukaemia Care stood by me when no one else did. My marriage broke down and I left the family home as everything in life was getting too much for me. I felt like the world was on my shoulders, and I was getting depressed because of life and financial problems. I was more sleepy, felt sick all the time, and run down. I moved into my mother’s spare room where I could sort my life out and have me time. Unfortunately, with using my holidays at work to go to my hospital appointments, my employer didn’t really help me. I was there over 10 years, as a key holder to the unit and played a good role in keep everything moving.
When my marriage broke down, I felt depressed, and anxiety took over as I felt I had lost everything I have ever built up. From a new build house with a hot tub and luxuries, to living day by day from a spare room for the last 24 months has been so hard. I contacted Leukaemia Care just over 12 months ago, and I honestly didn’t even know if they would or could help me. I was at my last straw. I had no money, no life and no happy place.
I got an email from Lisa from Leukaemia Care who was very professional and friendly. At the time I felt like I couldn’t talk to anyone at this time in my life as no one was helping, and I was just locking all of my friends and family out. Lisa was the only one person that helped me and got me back on the right path. She helped me fill out forms and get on disability benefits that I have applied for previously and been turned away. She was the only one that said your lifestyle isn’t what it should be and we will get you back on your feet. She was like an angel to me. I had absolutely nothing, and not one person was there helping me or guiding me but I could trust Lisa. I appreciate Lisa at Leukaemia Care so much for being there through my whole journey and I tell everyone that, my hospital, my GP, and now my mental health team.
I do wish to help raise awareness of Leukaemia Care so that they can help others like me. I do in all honesty feel this would have been a different outcome without the support for Leukaemia Care. I really would have given up. I feel that if they saved me, they could save a lot more people. Having the support any time helps to, even if it’s just someone to offload to, speak to and get advice. They always reply and help any time you email them. Just knowing you have someone at the end of an email or phone helps so much.