Richard's story

Richard Storry, 30, was diagnosed with Hodgkin lymphoma in November 2010, aged 17. Here he talks about how this impacted him, some of the specific challenges a TYA cancer patient faces and offers advice to others.

My diagnosis came after an accident I had. My friends and I were doing a human pyramid, with me at the bottom. Someone fell on me, and I hurt my ribs, so I went to A&E where I had a chest X-ray before being sent home and told to rest. About three weeks later I got a letter from the hospital saying the X-ray had been reviewed and showed a shadow on one of my lungs. I then had a CT scan and a biopsy, before being diagnosed with stage two Hodgkin lymphoma throughout the chest.

My treatment consisted of a couple of cycles of chemotherapy and quite a heavy course of steroids to start with. However, I then started to get pain in my left hip, which turned out to be a byproduct of the high dosage of steroids. Over the next year or so, my hip started to degrade and become more painful. It was necrosis in the hip, where the steroids caused inflammation and killed off the cartilage around the hip. It was quite a painful experience and would become its own medical issue.

I then relapsed and underwent more chemotherapy, but as the cancer was more widespread this time, I also had radiotherapy and a bone marrow transplant. That kind of dealt with it for another six months or so, but the radiotherapy damaged my lungs, and has left me with a persistent cough, almost like an asthma. 

I then relapsed again, receiving another large amount of chemotherapy, and another transplant, through a donor this time rather than using my own cells. That was the end of my treatment, which roughly lasted three years altogether.

Long-term effects

There’s sometimes an assumption that when people ring the end-of-treatment bell, they're all fine. But there are a lot of side effects from treatment, especially for those who have had a lot of it. The journey after the actual cancer and treatment is just as challenging, just in different ways. The physical impacts, for one, start to become more visible over time. These issues are sadly lifelong and that's the bit I’m having to get to grips with.

For example, the problem with my hip has continued. It’s been degrading over time. This means I've had to have a hip replacement at a relatively young age. Hip replacements only last about 10 years, too, so it means I’ll be having more of these big operations as I get older, which are only going to become more complicated each time.

My lungs are also still a persistent issue and I need inhalers and medication to keep them working. It's not debilitating now, but as I get older it’ll become more significant, as your lungs get weaker in later life.

I’m on less medication than I was, but it’s still four or five tablets and an inhaler to keep track of to order prescriptions. Staying on top of all that is a challenge, and things will become much more difficult to manage as life goes on.

For me, a big side effect of treatment that needs to be talked about more with young people is fertility issues.

I was asked to do sperm banking before my treatment began, which I’m glad I did, but I remember not thinking too much of it at the time. I think more open, honest and in-depth conversations need to be had, just to explain the impact a little bit more.

Mentally, I don't think at the time I appreciated the impact it had on me. I think because you're so focused on getting through the next bit of treatment, the ‘I'm doing this’ mindset, you always push your feelings to the side. I think that's where the mental health problems begin, because you're not dealing with it at the time, you're not actually processing things.

Unfortunately, my mum passed away during my treatment as well. So, there was a lot of stuff going on even on top of my cancer. Looking back, I was probably much more isolated than I realised, partly because of how the world of cancer treatment works and partly because you don't feel like talking to people or doing stuff.

Cancer also changes your view of the world a little. You may be more anxious of health issues – is this thing I’m feeling going to be X, Y or Z? There’s a tendency to almost over worry about things, there can be a big health anxiety.

How therapy helped me

A few years after finishing treatment I did a couple of courses of therapy. I started to talk about what it was like going through cancer, and what the impact was.

The mental health impact that cancer has is huge and I think people aren't aware of or appreciate that. And honestly, if I hadn't gone through therapy, I wouldn't have appreciated that myself. I think I’d have compartmentalised it all and thought I've got to keep going and powering on.

You've got to do it at your own speed, when you feel ready for it, but I think it’s important to speak to people, to talk about your experiences. Otherwise, you don't deal with these issues, you’re just bottling things up and pushing it down.

How can we empower young people around healthcare

Empowerment is all about helping a person’s understanding of things, and communication is the key to that. I think the most important thing for someone with their healthcare is that they understand what they're going through, why they're going through it, what's the outcome going to be, and what's the long-term impact.

If they understand these things and the implications, they’ll be empowered to make decisions about their health and take ownership, both in the short and long term.

I was relatively lucky in that the doctors and my medical team were always quite good at explaining what the treatments were, what the process was and what the next steps were.

But things can always be better. I remember a chest biopsy I had at another hospital, which didn’t go as I thought it would and left me with some damage to my ribs. What they were going to do was probably covered in this big, long consent form which I signed without fully appreciating what they might have to do.

Perhaps the information the patient is given can be presented in more digestible chunks, or a simpler format. Even doctors' letters can be full of very complicated wording and very specific.

Can they be a bit more interpretable for someone who hasn't got a medical degree and just wants to know what to do and how it's going to impact them? Things need to be as easy as possible to understand.

I think it’s important, too, to check the patient gets what they’re being told. Young people might not feel comfortable about asking questions, so it’s all about breaking things down for them and going over things again, point by point, just to make sure everyone's on the same page.

Being a teen or young adult with cancer

I think one of the trickiest things at that age is knowing whether you want your parents at appointments or not, or whether they should be. You want to be independent, but then likewise, you’re a teenager. So, you question whether you should be sitting there talking about things on your own or have someone with you.

It was never quite clear what the norm was. A little bit of guidance or perhaps something in an email, saying your parents are invited, would really help make a decision.

Speaking up for yourself, too, can be a daunting thing. You’re not as confident as an older adult and may not have a parent with you to question things. You may feel a bit awkward about asking.

For example, if an appointment was running late, rather than asking what was going on, I’d have probably just sat there wondering if they’d forgotten me.

Some things you feel more comfortable doing with age. Nowadays, I don’t mind asking, ‘Is this the right room’, or ‘Why has it been an hour since my appointment time?’. But as a teen, I was always kind of shy or embarrassed about making a fuss.  

What I’d say to young people with cancer

Take every day as it comes, that's how you've to deal with the short term and the long term. Chunk by chunk. And rather than focusing on and getting lost in the bigger journey, try to focus on and enjoy the small things.

It's a very hard mindset to have and obviously depends on how you’re feeling, but I found that having a routine in hospital really made a difference. Every day in treatment, I always got up, always had a shower no matter what. And that made such a difference every single day. It's very easy to just end up lying in bed all day feeling ill, which is probably worse for your medical care too, but trying to have a routine helped me feel like I’d achieved something.

I think it’s also important to recognise that yes, while there could be some long-term medical issues from treatment like I have, there are ways to mitigate and manage that. You can still have a normal, healthy life following cancer.