Callum was diagnosed with Hodgkin's Lymphoma at the age of 21 and was supported by Teenage Cancer Trust with his treatment and recovery. This is Callum’s story.
I'm originally from Chester, so just down the road from where the Million Pound House is. I was diagnosed back in 2017 and at the time, I was a university student. I was studying at Durham University reading French and History. I'd just finished my third year abroad, living and working in France. I'd been working in two French high schools teaching English, travelling around, having loads of fun, and meeting lots of new people. I was really enjoying being independent and doing my own thing. I was really into Drama. I was involved in a lot of theatre in Durham. I was a keen runner and could always be found traipsing up and down those high Durham hills. I was also really keen on volunteering and had been involved in a lot of voluntary projects at my college in Durham.
I returned from abroad in 2016 to complete my final year of Uni. It was quite an intense time doing my dissertation and thinking about final exams. Towards the end of 2016, I began to feel really tired all the time and napping during the day between lectures. I came home back to Chester during the Christmas break and I found a bit of a lump in my neck. I also had a bit of a cold and was feeling run down. I didn't think too much of it. I think there are a lot of final year students going home absolutely exhausted when it comes to the end of the term. I had a great Christmas at home and then returned to Durham to continue my studies. It came to February and I just felt really rotten. I came down with flu-like symptoms and had a really high temperature. I was just absolutely exhausted and started to have these drenching night sweats. I remembered the lump on my neck. One day, I was speaking to my sister and I told her what was going on. She was training to be a doctor at the time and was down in Great Ormond Street Hospital working on their oncology ward. Alarm bells started ringing for her. I was hesitant. I explained that all I had was a temperature and that people must get these symptoms all the time. But she was really concerned. I couldn't get an appointment with the GP for a couple of weeks but she convinced me to see an out-of-hours doctor at my local hospital. I thought I'd just be sent home with antibiotics and told to rest. When I got seen by the doctor, they said my symptoms were really unusual and that I was the right age to have leukemia. It came as a huge shock to me. I was told to follow up with my GP and get seen as soon as possible. I remember the bizarre 40-minute walk back to my halls of residence with those words ringing in my ears. The GP suggested that I probably had glandular fever or an infection. I was having lots of blood tests and the results came back as concerning but my GP said to go home and rest and not to come back. I was in a fortunate position with the support of my parents and my sister that I kept pestering the GP. For about six weeks, I was going to see them between 2-3 times a week. Eventually, I was referred for an ultrasound and told again that my symptoms were really concerning. By that point, my mum knew it was serious. My mum came with me to Durham and said to the GP that she wasn't leaving the surgery until they'd referred me to a specialist, which the GP did, reluctantly.
By this point, it was the Easter break. I got referred to a consultant hematologist back in my home town of Chester. My first appointment there was the first time that I actually felt at ease. I felt like I was surrounded by a medical team that actually understood me. They said that the worst-case scenario was that it could be Hodgkin's lymphoma, but that if it was, then it was treatable. I started a barrage of scans and tests. By this time, it was late April. I went back to the hospital and sat down with the nurse and the consultant and they confirmed it was Hodgkin's lymphoma, stage 3. It had actually spread. I had a big tumour in my chest and in my abdomen. Things were serious and moving quickly. Even when going through the tests, I was hoping to get the news that it was just some kind of infection and that I would just be able to take antibiotics. It was strange thinking that I'd messaged my friends at Uni saying that I'd see them at the end of the week. It's hard to comprehend. As soon as you get that cancer diagnosis, you're into six months of chemotherapy. You realise everything has been thrown into disarray. I was really fortunate that having spoken to my doctor, parents and sister, I realised that Hodgkin's lymphoma has a relatively good prognosis. There is that weird sense of relief that actually there's something that can be done. Being told that you need chemo is really hard to get your head around. I don't think I really understood what chemo was and what it entailed. When you're told that you need six months of treatment, it feels insurmountable. You think you're going to lose your hair, you're going to be sick, but then there's this whole other package of things about how it affects your immune system. You need to be very careful about what you eat or about being in crowds. I was told that even something like a cold could make me seriously unwell. It's not just about whether you feel up to doing something. You can do it but you need to be really careful about infection. I remember distinctly after my diagnosis appointment, there was an even more traumatic appointment. I was given a list of side-effects... pages long. I had to sign to say, yes please, give me chemo. It's things like sickness, fatigue, hair loss, secondary infection, heart damage, lung damage, infertility, even cancer was a side effect.
It was at that point that I was given the choice about where I wanted to be treated and if I wanted to be in a hospital that was affiliated with Teenage Cancer Trust. For me, my nearest one would have been in Liverpool or Manchester, over an hour away. So I took the tough decision to have the treatment locally on an adult unit. I would turn up to my chemo sessions with my mum, and the nurses would think it was my mum who was there for treatment because I was on a ward where the average age was 60+. I was the only young person there. They were looking at me and feeling very sorry for me. It was quite isolating. Being on an adult ward is lonely. The nurses were great but they just weren't used to treating someone my age. That's where Teenage Cancer Trust came in. I'd seen the pictures of their young adult units and thought that because I wasn’t on one of them, I was going to miss out on that support. I was wrong. I was linked through the Teenage and Young Adult team with someone called Frankie, the Teenage Cancer Trust Youth Support Coordinator. She came to see me at home just to have a chat. My parents really valued that support, which is lacking when you're on a really busy NHS Adult Unit. Staff simply don't have the time to give you that additional support. Frankie supported me all through chemo and let me know about the various opportunities that would be open to me once I'd finished treatment. Living back with my parents was a really big change having been so independent and having lived abroad the year before. It was a big shock. On bad days, in between treatments, I couldn't even get myself dressed properly and was struggling to feed myself. It was tough to take as a 21-year-old. I came to value Frankie's visits. To be able to talk about some of those challenges (like how do you juggle friendship and cancer, studying and cancer, a life beyond treatment) was very important for me. For a young person, cancer isn't the only thing going on in your life. I was still juggling being at university and somehow, with the support of my parents, friends, and the university, I actually managed to complete my degree in between treatments and get a 2:1.
I finished treatment in October of 2017 and I got the all-clear in December. But the support I was getting from Teenage Cancer Trust didn't stop. When you're emerging and your treatment has been a success, you think, what am I going to do now? Where do I go from here? That's when I really came to value the support from Teenage Cancer Trust. One of the first things they encouraged me to get involved with was a session with the organization, Look Good Feel Better, exploring the way that cancer has an effect on your body image, your appearance and your self-confidence. I was able to meet with other young guys and have a conversation about how chemo changes you. I'd lost my hair by that point, I'd lost a lot of weight as well and I'd gone from being a keen runner to struggling to get up the stairs. To have that space to talk to people who got it was incredible. To connect with those people was so important. I then started going to Teenage Cancer Trust's peer-supported events in Liverpool. Travelling up there and just doing simple things like going to the cinema was great for my independence. It sounds simplistic but when your routine has been all about cancer, you feel disconnected from normal stuff like that. You realise that while your friends are really supportive, their priorities are not the same, so to be able to meet up with other young people who just get it, was so valuable. I spent the next 10 months getting really involved and got the opportunity to travel down to London to go to a backstage event at the Royal Albert Hall, which was fantastic and was my first overnight trip since my treatment. We did a music workshop that really took me out of my comfort zone and I got to go on stage in front of a huge crowd. It was unique and built a bit of that confidence back up. I then had the amazing opportunity, with The Ellen MacArthur Foundation, to go sailing that summer off the coast of Scotland, which was incredible. It was something I never thought I would do. These connections gave me the perspective to understand that my experience with cancer, although challenging, was not defining. I could move on from it and think about what I wanted to do next.
I started thinking about jobs and work and I was very excited to learn that I'd got a job offer with a health charity down in London on a Graduate Training Scheme, which was amazing. I moved down to London in September 2018. The big Teenage Cancer Trust event, Find Your Sense of Tumour, was then in November, which was a great opportunity to reconnect with the cancer community. It was a fantastic weekend of workshops and talks and it was great to be able to share my experience. On the way back, I'd seen a post on Facebook from the cancer survivor and playwright, Toby Peach, saying to get in touch if you've had experience with cancer and you're interested in Drama. So, I got in touch and got the opportunity to take part in a fantastic project called, Looking Forward, which was a series of monologues exploring what happens once cancer treatment ends. It's the bit of the conversation which is always missed out. We performed it in April 2019 to sell-out crowds at the Battersea Arts Centre in London and then again at the Teenage Cancer Trust event in 2019. It was great to go back a year later and actually share something. Since then, I've had a different relationship with Teenage Cancer Trust in that I've had the opportunity to go to fundraising events and share my story. It's been an interesting journey, from being supported to supporting them.
Looking to the future, I'm coming to the end of my Graduate Programme and thinking about next steps. I'm not sure where I'll go next but I'm open to opportunities. During the lockdown, I've been shielding and it just reminds me of how isolating it was. But I'm looking forward to exploring new opportunities. I'm fascinated by what's going on in the charity sector and I'd love to continue on that path.
The support Teenage Cancer Trust gives is unique. There's nothing quite like it. I don't think there's any other organisation that really understands what facing cancer as a young adult is like. They understand that cancer isn't the only thing going on. It impacts education, work prospects, social life. They gave me the confidence to not feel limited by my past diagnosis but to build on it and go out into the world. The support they give is invaluable. Having spent a lot of time around people with cancer, I know that my case isn't unique. The charity depends on donations to keep supporting young people and their support has never been more important than right now. Cancer doesn't stop for anything.
Support Teenage Cancer Trust
We're donating 80% of the proceeds from the Omaze Million Pound House Draw to Teenage Cancer Trust, who help teenagers with cancer, like Callum. Enter the Draw today and you'll be helping frontline nurses and support teams at a time when help is needed more than ever. Plus, you could win a Million Pound House in Cheshire and over 2,000 additional prizes. Don't delay.
