Alex & Iwona’s StorY

We’ve both wondered whether something in our lifestyle meant we both got cancer in our twenties.

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.

Iwona’s story

I was 28 and I was feeling really well. I’d been doing a lot of exercise: around three spinning classes a week, as well as running.

I noticed a lump just above my collarbone. I didn’t think much of it but made a GP appointment. I thought it might be something to do with my thyroid, but the GP said straight away that it probably wasn’t. She was very proactive, taking bloods and making a quick referral.

My bloods showed I had higher white blood cells than I should, a sign of inflammation or a virus. Soon after, I had an ultrasound on my neck and collarbone, then a CT scan. I had a call the next day to come back to the hospital. The doctors said they were 95% sure it was Hodgkin lymphoma, but that if it was, it was very treatable. They confirmed it with a biopsy then did a PET scan to pick up anything that might have spread. Before any treatment started, they arranged for me to have my eggs collected, as they were concerned my fertility would be affected.

I started chemo within three weeks of getting my diagnosis and it lasted for about two and a half months. The PET scan showed that it seemed to be working, but there was a concern that not all of it was gone, so I was put on stronger drugs. They told me the list of possible side effects and it sounded awful. But in fact, I actually coped better with the new drugs than the previous ones. One piece of advice I’d offer to others going through treatment is not to assume you’re going to feel worse just because the list of possible side effects is longer. Each body reacts differently – you just have to give it a go.

I continued to work from home throughout this time. My boss was really understanding and keeping busy was a great distraction, giving me a reason to get up every morning. When I started the stronger drugs I worked a bit less, as I had to spend more time at the hospital.

I had five and a half months of treatment in total. I struggle to remember a lot of it – both Alex and I feel we’ve forgotten a lot about our experiences. It was a shock for me to get the diagnosis but having been through it twice with Alex, I knew it happened to younger people and wasn’t that unusual. We’ve wondered whether it was something in our lifestyle that meant we’d both got cancer in our twenties. Or maybe it was meant to be part of our story, as we both know what it feels like and we’ve been able to help each other through it. My family live in Poland and I definitely sheltered them a bit to make it easier for them to cope. My friends were very supportive but I couldn’t quite tell them everything. It felt easier to talk to Alex as he’d been through it – he just got it.

After treatment was over, I had another PET scan and got the all clear. I was very relieved to get that news. I went for check-ups every three months. Despite our preparation for IVF, we decided to start trying for a baby naturally. I fell pregnant about a year and a half after my treatment finished and we were delighted when our daughter arrived.

During treatment, I used the lymphoma forum a bit, but I didn’t feel like I needed the counselling that was offered. Instead, I distracted myself by planning to adopt a rescue dog to celebrate the end of it all. We got him about a week after treatment finished – he keeps us walking a lot and has helped me get some of my fitness back.

I had already experienced cancer from the carer perspective with Alex. To see someone suffering so much was really hard. Unlike in my case, he was so ill when he was admitted to hospital, and in hospital for so long. Luckily, his prognosis was pretty good, so that helped us both. Something we both found useful was to plan good things to look forward to. For anyone going through this, do make plans – a holiday or whatever else keeps you going.