I was first diagnosed with chronic myeloid leukaemia (CML) in September 2020. I wasn’t aware of the classic signs and symptoms of leukaemia to begin with, so it’s difficult to look back on that time and differentiate between what were symptoms of leukaemia and the stresses of everyday life. Rewind to 2020; I think I lost about two and a half stone just before my daughter was born and I put that down to the usual kind of stresses of preparing for a baby. I was only 29 at the time and all the other bits and pieces that were going on with COVID and everything else in 2020 meant I didn’t really think twice.
I then started to get very tired. I even used to go to bed every night around 9 pm because I had no energy and felt very lethargic in the daytime, that was really unlike me. I remember when I went for a run, a pretty simple run around the park, and I was very out of breath and almost gasping for air! Things didn’t quite seem right but I’m not one to rush to the doctors to get myself checked. I just put it all down to being unfit, being a dad and all the other bits and pieces. Looking back, they were the first warning signs.
In September 2020, I went on a family holiday. When I was driving my right eye just became quite blurry, which is very unusual. I had lost some vision in my right eye! Immediately when I went back home, I got myself to the opticians; I thought I just needed to get some glasses or that I was short-sighted. The specialist at the opticians booked me in for an eye observation and they saw a clot behind my eye, which was very unusual, and they put it down to potential diabetes. So, I thought “OK no problem.” And then, she sent me for some blood tests the next day at the doctors.
When I went to get my blood tests done, the nurse went to withdraw blood from my vein and my blood was so thick that they couldn’t get blood out very easily. I went away and 24 hours later I got a phone call. I remember the words, “Michael, are you sitting down?” I said, “Just tell me what’s happened.” And then the doctor said, “You’ve got leukaemia.” Those words triggered an automatic spiral, and I just broke down in tears. My wife was away at the time with my eight-month-old daughter, and I just couldn’t even believe what she said.
I went to the hospital immediately that day and left my wife and daughter at the front door. The consultant, when I walked in, was shocked I was able to walk because my white cell count was extremely high. I was at a heart attack, almost stroke level. They were very surprised that I was still walking. I was immediately rushed to the ICU and put on a blood thinner machine, a machine that sucked out all the sticky white cells which were clogging up my blood. I was there for about two and a half days, just getting my blood counts back to a normal level. And then I started a course of Hydroxycarbamide for probably about two weeks in total as my white blood count slowly came back down to a manageable level. I also had a bone marrow test just to confirm it was CML, which of course it was.
After all this, I was told that I was going to take a tablet for the rest of my life and then the rest is kind of history. So, you know, fast forward a year and a half and I go back every three months for blood tests with Manchester MRI who have been amazing in terms of looking after me and supporting me, giving me all the information that I need to manage the disease. The negative side of being diagnosed at such a young age is that it’s a real shock for not only me but for my immediate family. When you hear about leukaemia, you automatically think “Am I going to die?” They were my first words after diagnosis, “Am I going to die? How long have I got left to live?”
And you automatically Google and you should never Google because Google isn’t the best solution for looking for stuff. The consultant spoke to me about it; he said it was a very treatable disease nowadays. I still to this day have not looked up CML or searched for the prognosis of it. I like to listen to my consultant who is the expert in the science and listen to their advice. And that’s my advice to any young people: Listen to the consultant who looks after you because they know best. And so that’s what I’ve done.
Yes, I had all these symptoms: night sweats, collapsing, weight loss, fatigue… all in isolated incidents so I didn’t put it down to anything. But looking back I had every single symptom of leukaemia for CML.
It’s quite scary because I didn’t know how long I’d had CML for. As my cell count was so high, I suspect I must have had it for at least a year, maybe two years. To have all those symptoms and to not really think anything of it is even scarier because as I put everything together now, looking back in hindsight, the collapsing and night sweats seem obvious. I just wrote it off as hot weather in the night. And you just don’t associate it with something more sinister.
There are some amazing drugs which I take called tyrosine kinase inhibitors (TKIs). I take Dasatinib once a day; I started on Imatinib, which is the first line drug, but I became resistant to that. Since starting Dasatinib, my results have come down to their lowest ever level. It’s now actually almost in Major Molecular Response (MMR) which is amazing.
The most important takeaway for me, is raising awareness for young people. Just get yourself checked. And even if it’s a little thing that you don’t think is quite right. I think it’s important just to go and see a doctor. Don’t be scared. With men especially, including myself, you’re quite reluctant to make a fuss and you don’t want to burden people with your problems. But I’m a big advocate now if there’s something wrong with you, go and see a doctor.
I think my main concern is the dismissal patients can sometimes face. I collapsed in the summer of 2020 in August. I just stood up and literally blacked out. I was sick as well. Immediately, the pub called 999 and there were no ambulances available to come and get me. When I regained consciousness, I was fine. I called 111; they assessed me and said, “Look, you sound like you’ve got a viral bug.” I didn’t think it was that at the time, but because it was the height of COVID and the waiting times at hospitals are so high, I just thought I would take their advice. But then I messaged the doctor and told them all my symptoms, and she just said, “Look, if you’re fine now, don’t see me.” So, I think they were quick to dismiss my problems. If I didn’t take myself to get that eye test, I could not even imagine where I’d be because I was very close to having a heart attack or stroke as it was that severe. Quite frustratingly for me, if I got treated sooner and if I got seen by a doctor sooner, I think my white cells wouldn’t have been so high and I wouldn’t have had to have to go through the whole blood thinning and transfusion process. Maybe if things had gone differently when I collapsed and there were no ambulances, I could have been treated quicker.
The mental impact of a CML diagnosis
I think for CML it’s not necessarily the physical side of it like the side effects of TKIs, it’s the mental side of it because there is an element of worry. When you go and get your bloods taken every three months, you have to wait for two weeks and every time I know I’m going to worry about my count again. I think in general I’m more anxious now. I never really used to worry about a lot of stuff. I was quite a positive person.
Because I didn’t see my diagnosis coming before, I’m now much more on edge every time that something’s wrong with me because I want to be proactive about it and not leave it to chance. I want to get it checked or speak to my doctor about it. My diagnosis has made me open my eyes. The anxiety around it is a big thing but I manage. As I said, I’m only young and I think it’s completely normal to experience some anxiety. I think I could deal with CML under normal circumstances, but then to have a global pandemic and children born in the same year. It was a lot to handle and a lot to take in.
Especially when I had to shield as well. I had to shield for two months and couldn’t see close family when I was diagnosed, that was hard and often my daughter couldn’t go out and see her friends so it affected her socializing really because she couldn’t go to nursery.
Becoming friends with fellow CML patients
CML patient Carrie Findlay and I have become very close. We have both said that since getting diagnosed with CML, we both automatically worry a lot more because you take everything more seriously now. You question everything.
I had seen Carrie on Leukaemia Care’s social media doing sponsored runs and taking part in other activities. One day she posted on a CML Facebook page (CML UK page) and she talked about her story and about similar problems I had experienced; she got misdiagnosed quite a few times by the doctors and was dismissed, and it took about a year to get diagnosed. So, we got in touch, and I spoke about my story and shared similar memories. And that’s it, really. We’ve got a lot in common. We both like our holidays and Carrie actually lives about 20 minutes from my wife’s mum and dad. We both like running, sports, and Disney. We speak every day and she’s quite a positive person like I am, and I know she’s had her down moments due to the worry and the stress but she’s an inspiration to me really because she’s now in remission. She’s undetectable, and I think I like to hold on to those positive stories. Carrie’s gone for it and I’m going to get the same and it’s great.
Carrie’s a completely different person to me. She’s older and we probably would never have met or spoken if it wasn’t for CML. The silver lining to CML is that it has brought people together that would never have usually spoken to each other. We have forged a really close relationship. We always make each other laugh. We’re always looking to raise money for blood cancer. I think it’s great that we can turn a negative into a positive.
Why finding a support network is important
I joined the CML UK Facebook group quite early. I was searching for a support network just to speak to someone about it because people without a diagnosis don’t really understand what it is like to live with CML. My mum thinks I take paracetamol, and that’s it. It’s not quite paracetamol, it’s quite a toxic chemical in your body that keeps you alive. I reached out to the group. I just posted my story and loads of people messaged and I just got talking to Carrie on that so that’s how it all got started.
Telling people about your diagnosis
It was tough telling people more than anything. Once the consultant told me that I would be fine and I would live a normal life, it automatically relieved me, and the anxiety went away. That was the reassurance that I needed. But it was still hard explaining what CML was to my mum and my dad and my wife, and all my friends and family and work colleagues that were messaging me. It was explaining that it’s leukaemia – it’s cancer but it’s a chronic illness. I always explain leukaemia like diabetes, diabetes will never go away. It’s something that you’ll take tablets or injections for the rest of your life. That’s how CML is. It will never go away until there’s a cure, which I do believe there will be a cure. But you just take a tablet which controls it. And that’s kind of how I explain leukaemia to people.
One of my first questions after diagnosis was “Can I have children?” because I was on that very toxic hydroxycarbamide at the start. I actually felt more ill on that tablet than I did on the TKI. I could feel it burning the backside of my throat.
Because I was on this for about two weeks, they did say it could affect my fertility: “did I want to go and bank some sperm?” It was quite an embarrassing moment when I was walking down to the sperm bank where my specialist nurse was waiting outside. I was very tired and had had a lot of blood taken from me, but I did it.
With the TKIs there’s varying messages on having babies. I think, for now, there’s no evidence to suggest that you cannot try for a baby on the tablets that you take, but the doctors don’t like to recommend it for professional reasons. I know a couple of men that have got CML and are on the same tablets as me and have had children.
But I think more problems arise when it’s women with CML on TKIs and the effects on their fertility.
Micheal Rose’s update
“I took two months off work to process it when I was first diagnosed because my white blood count was one of the highest in the CML community. It was 600 at its highest– half my body at that point was cancerous. I walked into hospital and everyone was still shocked I was still alive because I was at heart attack level and very close to not making it. There was that to deal with because I had my daughter, cancer and Covid in one year, so I took two months off to just reset my life…
Fast forward to 2021 and my daughter is now 2 and a half and I am in the place I need to be to keep it under control. It is a second generation drug but I am managing to live my life without the cancer being a part of me. I am a full time dad, looking after my daughter and being a husband as well as working a 9 to 5 sales job. Through Leukaemia Care I had counselling therapy and it is good to talk to someone about the mental side of living with cancer which I find beneficial to not burden my family with the mental side of things. It is never going to go away, but it is good to have someone to speak to about how you feel.”