Alex’s story

I was first diagnosed a little after my 25th birthday in 2010. I’d been picking up every illness going. I had headaches every time I stood up and I struggled to walk up and down stairs.

The GP initially thought it was stress, and it took three trips to get them to take a blood test. As soon as they did, I got a call to go straight to the hospital for more tests. The same day I was wheeled into the cancer unit and was shocked to be told I had leukaemia. I was admitted immediately and didn’t leave the hospital for months.

On the plus side, I was told right from the start that it wasn’t the worst type of leukaemia I could have developed and that it was treatable. So I never once assumed I wouldn’t get through it. I genuinely thought, “I don’t know what the future’s going to be, but I’m going to get through it, however horrendous it is”. Because I was so unwell at the time of diagnosis, I had little time to process and dwell on negative thoughts, and I was too ill to even Google it, which was kind of a blessing. My partner Iwona and I knew we wanted children in our future, so I had my sperm frozen before chemo began.

I didn’t research the type of chemotherapy much, I just put my trust in the doctors and went for it. I had chemo over about six months, during which I felt pretty horrendous and was sick a lot from the intense treatment. My age was in my favour, because I could have stronger drugs than the very young or very old. I saw the same nurses every day and built up a good rapport with them and a healthcare assistant called Tom, who would light up the room every time he arrived. They all made such a difference to me while I was in hospital.

Before my final chemo session I was told I was in remission. It wasn’t really a moment of elation as I was still in treatment and feeling ill, but it was good to hear the chemo was working. After it was over I went back once a month for check-ups, then quarterly, then six monthly, etc. I was feeling better, regaining hair and weight.

A couple of years later, a routine bone marrow test revealed that my cancer had come back. I was feeling fine and it hadn’t spread as it had previously. I was put on a different drug, treated as an outpatient roughly once a week and kept working half my hours. It was completely different second time round, as I was feeling well at diagnosis, I didn’t have to be admitted and I’d dealt with the shock of diagnosis before.

The thing that helped me the most through all of this was my family and Iwona. They really were the biggest help and support through a time when I couldn’t even say the word ‘cancer’. After my first diagnosis, I didn’t want to see any of my friends. I thought I would just pause my life and see them when it was all over. In the end, it was my nurses who convinced me to let my friends in. The number of people who contacted me made such a difference, particularly people I wasn’t even expecting to get in touch. Just reaching out and showing you’re thinking of someone really does count.

When I was on the ward, I saw a counsellor a few times, but it didn’t work out for me. I think there should be more regular support at a time that suits patients, as there are many moments during a long hospital stay when you’re too sick to engage. As part of my recovery, I tried some acupuncture privately and also gave meditation a go for the first time. That’s something that still helps me relax now.

Later on, when Iwona (now my wife) was diagnosed, I had to experience cancer from the carer’s perspective. Weirdly, I wasn’t even that surprised to get the news, having gone through it twice myself. I’ve accepted now that these things do just happen to normal people. Iwona was treated by the same doctors in the same rooms as I was. It was so familiar, except this time it was me standing by the side of the bed watching. The hardest part of being a carer is the helplessness that comes with it. There’s also a huge practical pressure – I was still working in the day, then coming home to cook and clean. My parents took Iwona to her hospital appointments, so it was wonderful to have my family, the people I trust most, supporting her.

Now all my check-ups are finished and I’ve been cancer free for five years. I still worry at the first sign of illness and I always keep an eye out for symptoms.

Something I’d recommend for anyone going through cancer treatment is to keep a list of things you’re going to do when you feel better. It helped me to have some goals: have the family round for Sunday lunch, go away for a weekend with friends – even small things like being well enough to put the bins out.