Matteus's story

Matteus Irso-Coombes, Community Fundraising Coordinator at TYAC and its sister organisation Children’s Cancer and Leukaemia Group (CCLG), was diagnosed with leukaemia aged 24. He tells us about his experiences of cancer and how they’ve altered his outlook on life, as well as how his experiences have helped him mentally.

I’d always thought that your mid-20s were when you started to plan your life out, building the foundations for the years to come, whether this be in your work or home life. But for me, this all changed in October 2019, when I was diagnosed with acute lymphoblastic leukaemia (ALL), a month before my 25th birthday.

I first noticed symptoms in July of that year, when I began to feel lethargic and tired, to the point where I’d even fall asleep at work. I'd naively put this down to not eating properly and pushing myself at the gym, even though I’d be out of breath after as little as 10 minutes exercise.

I perhaps should have clicked that something was wrong when I started to suffer from night sweats and waking up in the middle of the night in a soaking bed. Again, I told myself there was a simple explanation for this, like the humidity of summer, and didn’t connect that the symptoms could be related.

I went multiple times to my GPs before I saw a doctor. A nurse said there was nothing wrong with me, but I knew there was a pain, there was a feeling that something wasn't right.

Then I began getting serious pains in my knee. I kept going back and forth between the GPs, as well as minor injuries, where despite a lot of discomfort and an X-ray being taken, no problems were found. However, the pain became so bad that I knew something wasn’t right and persevered. I’d only seen the same nurse on my first few visits to the GPs, but when I eventually got an appointment with the doctor, she asked me if there were any other problems I was having.

We had a long conversation about how I was feeling and everything I was going through, and I told her about often being out of breath and the night sweats. She knew instantly that something wasn’t right, and I was told I needed to have some blood tests.

A few days later, she rang me and told me they’d found some abnormalities in my blood and suspected I had leukaemia and that I’d need to get to the haematology department at Leicester Royal Infirmary, where I was officially diagnosed with acute lymphoblastic leukaemia (ALL) on 2 October.

Treatment

I was immediately put on steroids to slow the spread of the cancer and then, for several months, I had daily chemotherapy, which was followed by radiotherapy and a stem cell transplant. I spent almost all this time in hospital due to a multitude of complications resulting from my treatment, including a number of infections, and a seizure caused by a blood clot on the brain which was due to side effects of one of the chemotherapy drugs. Despite these problems and the feelings of isolation I was experiencing, I tried my best to remain positive and think of where I would be in a year’s time.

Post-treatment

It’s a common misconception that after treatment finishes, ‘that’s it’. But after mine finished, I was still going to the hospital three times a week for check-ups, to get my bloods taken and to check my heart rate and weight, things like that. These appointments do become less frequent as time goes on, but the reality is that I’ll be seeing the doctors I’m seeing now for the rest of my life.

The long-term effects my of treatment

The chemotherapy did a lot of damage to my kidneys and I’m on drugs to help stabilise them. The steroids have caused me develop a lot of stretch marks, which is something I don’t like and an appearance I don’t want to have but can’t do anything about. I’ve also struggled mentally and have been prescribed antidepressants, and struggle to sleep.

I’m also immunocompromised and am incredibly susceptible to illness. These late effects are the long-term cost of my cancer that I probably I didn’t really realise at the time of my treatment.

The impact of my cancer

Before I was diagnosed, I was living how most people my age were: going out and enjoying myself with nothing much to worry about. But, since my diagnosis, my perspective on life has changed significantly. I’ve become much more aware of my own mortality, and feel I need to do as much as I can with my life and not waste a single moment.

Late effects are the long-term cost of my cancer that I probably I didn’t really realise at the time of my treatment.

I’m grateful to now be able to travel again and see what I can of the world, exploring different cultures, eating new foods and meeting people from different walks of life. That said, there’s been moments where it’s been difficult to not think about the time I’ve lost, and things that I feel I’ve missed out on doing because of my illness, be that personally or professionally.

Why communication is key

I’ve always found it helps me to talk about my experiences with cancer, whether that’s to consultants, colleagues, friends or family. I find it cathartic, and it helps to alleviate some of the pressure I feel from time to time. It clears my mind, and it’s important to talk, so that people know how I am feeling and to get help and support when I need it myself.

It’s important to let people know how you're feeling and don't hold it back. If you can tell someone how you feel, they'll be able to do something about it, whether that’s friends or family, or a doctor or nurse. You've got to communicate. Because, if you don't, people that are there to treat and support you, can’t help you with your problems.

Since my diagnosis, my perspective on life has changed significantly. I’ve become much more aware of my own mortality, and feel I need to do as much as I can with my life and not waste a single moment.

Some people might find it hard to talk, but I know that it helped me. I'm not very good speaking to strangers, but at the same time, I will let my problems be known if I'm in a situation of need. If you are struggling, you just need to let it out. Even if it's to write something down or you text something to someone, it can help. There are also a lot of people that can talk to you while you're in hospital, such as a psychologist or peer support groups, and I’d advise utilising them if you felt comfortable.

For friends or families of the patient, I’d advise them to just be there for them and to listen. Letting them get things off their chest, knowing that you’re listening and supporting, is invaluable and shows that you care.

Be persistent if you’re worried about your symptoms

Don't be afraid to do exactly what I did where I kept going back. You know your body and how it’s meant to be. If your body doesn't feel the way it's meant to, speak to a doctor straight away and don't take no for an answer. 
I went multiple times to my GPs before I saw a doctor.

It’s a common misconception that after treatment finishes, ‘that’s it’.

A nurse said there was nothing wrong with me, but I knew there was a pain, there was a feeling that something wasn't right. So, if you're getting an ache or have a lump somewhere that's not meant to be there, and it's stayed there for a time, even if it's two or three weeks, get in contact with your GP and make sure you see your doctor.

Seeking support

A couple of years after I finished treatment, I realised that my health and the trauma of my diagnosis and treatment had eventually caught up to me. That’s why I’d advise patients to access any support that is available as soon as you can. That way, you will hopefully not have as many problems, and you’ll have support for a longer period of time.