Posted on Saturday 3 October 2020
Jess’s London Marathon story: “I want other young people to know there is hope. Don’t let cancer define you.”
Jess was 13 years old when she was diagnosed with Hodgkin Lymphoma. Now 29, Jess was due to take on Virgin Money London Marathon 2020 for CLIC Sargent but the event has been cancelled due to the pandemic, so instead she’ll be taking part in The 40th Race – a virtual version of the London Marathon – on Sunday 4th October. Here Jess shares her story to dispel any myths that cancer defines you.
I was diagnosed when I was 13. I had noticed a strange lump on the side of my neck quite a few years before and had been to the doctors quite a few times. I was doing really well at school and felt fine playing sport, but my mum’s instinct told her that something wasn’t right.
The doctors kept dismissing the lumps, saying they were hormones. It wasn’t until I visited another GP having injured my knee playing netball that they noticed I also had a sore throat and seeing the lumps, sent me straight for a consultation.
A few months after that, I got the diagnosis. I never actually felt ill when I had cancer, except for hot and cold sweats which we put down to going through puberty. That definitely had an impact on my mental health, the fact I had cancer but was also feeling perfectly fine and healthy. Rationalising that was really difficult to deal with mentally.
I remember the impact of my diagnosis and getting the news really vividly. My parents found out the day before they told me. I could tell something was not right but my mum said her teary eyes were due to bad hay fever. When they then told me I had cancer, I fell to the ground. I was devastated. The first thing I thought of was my hair. As a young teenage girl who was popular at school and just started a relationship with her first boyfriend, the fact I was going to lose my hair was the biggest thing in the world. It was such a shock too because I felt fine.
My families attitude was very much that we were going to get through it and fight all the way. There was never a discussion of the treatment not going to plan.
I had chemotherapy, X-rays and numerous scans over six months. The hospital was an hour away from our home, it felt like endless long car journeys. I was incredibly lucky as my mum worked for my dad’s company and so she was able to take time off to look after me. But it was a really difficult time for the whole family as I also have two younger brothers. Little things like having to pay for the parking or not being able to find a parking space were a perennial source of frustration. My family didn’t want me to have to walk long distances when I was so weak.
I lost my hair which was the most devastating thing and this still upsets me even when I think about it now. I was also so tired, no matter how much I slept I never had the energy to do even the simplest of tasks. The embarrassment of having to continually talk about thigs such as my bowels as a teenager I found so difficult. The steroids also caused me to balloon and put on so much weight. Dealing with that at a time in your life when body image is so important was really tough.
The effects of chemotherapy were really strange, I didn’t feel like myself, it was like an out of body experience. I don’t know if a mental thing or not, but I never felt like me.
The impact on my mental health I didn’t recognise until later, I was always trying to be strong for my family and not wanting people to see me sick and ill. Later on in life, I have developed anxiety. Suddenly I developed hypochondria and starting thinking everything was linked to cancer. I’ve done a degree in biology and I know it is irrational to think like that, but it’s still how I feel. I never really acknowledged the impact at the time on my mental health, it is something that has hit me later in life.
At the time, everyone asked how I felt physically, not mentally. “Are you ok?” wasn’t “Do you want to talk about what you are thinking and feeling?”. There was no discussion about that.
My school was really supportive and I didn’t have a problem taking time off. But I was an ambitious teenager and I really didn’t want to miss my studies. But having school be so flexible made me feel much better and knowing they wanted to support me.
My resilience is something I took away from the experience, I strongly believe that you never know how strong you are until you have to be. My colleagues and friends often talk about how well I deal with stress and I can’t help but think it is linked to having survived cancer. I have always been very ambitious with a lot of energy and enthusiasm, but I think that is because I understand first hand that you never know what is around the corner.
I never take for granted the importance of the close relationships I have with my family and friends; loved ones are the people that matter most and will help you get through experiences such as cancer.
I now take my health very seriously and keep very active with an abundance of hobbies. I try to live life to the full and have travelled to a lot of countries taken on any new experience I can.
I want other young people to know there is hope. Don’t let cancer define you. It will always be a part of you but don’t let it hold you back. Certainly learn from your experience with cancer, but never let it dampen your ambition of what you want to achieve, no matter how big or small. Cancer is but a blip in the road, a hurdle on a longer journey. If I was going through chemo now, I would want to read about someone else’s journey to show what they have achieved. It’s not the end of the road.
CLIC Sargent support
CLIC Sargent were incredibly supportive when I had cancer. I remember most that they organised socials for teenagers and that was really important to me. I was a young adult on a children’s ward and it was really demoralising, a nightmare. I craved that independence and talking to people my own age. CLIC Sargent acknowledged I was older and a teenager, and they allowed me to meet other people my own age going through similar things, which really helped.
The reason I am running is because I owe it to the people who helped me out all those years ago; to raise funds and awareness. CLIC Sargent helped me as a teenager; teenagers and young adults have different requirements to other age groups. I also wanted to raise awareness that cancer doesn’t define you. People look and treat you slightly differently when you are going or have had cancer and that bothers me
I got all my school grades and went to Oxford University, getting a degree in biology. After that, I went to work at Kew Gardens as a Botanical Horticulturalist and found myself looking after the very plants that produce the drugs my chemotherapy came from (the Madagascar Periwinkle). In recent years I have been working for the Civil Service of which I have found especially motivating. The Civil Service requires a level of resilience to plough on and “get stuff done” – part of what I went through as a teenager. I currently work for Defra, leading on Legislation and Devolution matters for Agri-Food policy,
I’ve always run, and completed many half marathons, but never full one. The London Marathon is iconic because I have set up my life in London and making it to the capital shows how far I have come. Taking on the big city marathon embodies that.
Running has always been a source of stress release, for whenever I have needed a break, and to gather my thoughts.
The 2020 London Marathon would have marked 15 years since I was diagnosed with Hodgkin’s lymphoma at the age of 13. I have never spoken out before about it, but I am keen to dispel myths about what a cancer survivor looks like and the perception that it defines you. It is a huge shame this year’s Marathon isn’t happening because of the COVID-19 pandemic, but I’m looking forward to The 40th Race, and will be completing the London Marathon when it returns in 2021.
I have since got a degree from Oxford University, travelled to over 22 countries and worked as a Civil Servant in both Parliament and in Defra amongst other things. From talking to my family, one of the things that got them through my cancer was reading about survivors. My mum, in particular, said that in the darkest days hearing and reading stories about the achievements of survivors really gave her hope. I want to show if you have cancer as a teenager, it doesn’t stop you from achieving anything.
To sponsor Jess’ London Marathon effort go to www.justgiving.com/fundraising/Jesssica-Lee