Andrew generously shared his personal journey with follicular lymphoma at our 2024 Unlock the Cure Gala Dinner. Watch his inspiring speech below, and scroll down to read his full story.
My name is Andrew, I was diagnosed with stage 4 follicular lymphoma at 25 years old. Before my cancer diagnosis I was in my mid-twenties and life was very exciting. I was living in Leeds with my wife Leah, finished university and secured a graduate job in mechanical engineering. I was also pursing my sporting ambitions in athletics as an 800m track athlete. Life was great, I was working, training and spending time with friends, the last thing I expected was a cancer diagnosis.
At the beginning of 2021, I started to feel physically unwell, experienced large dips in energy, had regular night sweats, bloating and pain. I couldn’t do the things I would usually find so easy. I was quite naive to the possibility that these were serious symptoms. As an athlete, the idea of being seriously ill just doesn’t cross your mind. In a search for answers, I went to see several doctors and was told that I had IBS due to stress. One specialist even told me I was too young for it to be cancer and ruled that out straight away. Whilst waiting on some results, a lump appeared under my chin. After shaving my face, Leah saw this lump and was alarmed by the size of it. Something wasn’t right.
Nothing can prepare you for how you’re going to feel when you hear the news. I was overcome with an immense feeling of fear and anxiety. Your mind goes to the worse case scenarios, “Am I going to die? How long do I have left?”. I was in pure disbelief that I had cancer at 25 years old. It didn’t feel real. I thought, at any moment I would wake up from this nightmare.
It was difficult to come to terms with my new reality, and all the uncertainty that came with it, it was a massive shock, but I just tried to stay positive and hope for the best. I started a combination of chemotherapy and immunotherapy every 4 weeks for 6 months. Treatment was an incredibly tough process both mentally and physically. Each month I had to prepare myself for the horrible side effects of the drugs and how weak my body would become in the aftermath.
However, I was adamant not to give in to the effects of the treatment and let myself get weaker and weaker each month. After each treatment I focused on how I was going to recover, get my strength back and return to running. During a time where you are so out of control, this was a great way to have a goal to work towards and gain back some of that control. This ambition gave me so much strength and optimism that the treatment would be successful. I wasn’t going to let cancer get in the way of what I loved doing. Each month I built myself back up, slowly working my way back to running again. By the time the next treatment came around, my body was in a strong place, but I would get ready for it to be torn down again, and the process repeated. This was a relentless rollercoaster to go through each month, but it felt as though I was fighting back against cancer in my own way.
Following treatment, I was lucky enough to receive some amazing results, I had achieved a complete response and no evidence of disease. We couldn’t believe it, to have such a drastic change in that time just didn’t feel possible. We were overjoyed with this news. Physically, the hard work was done, my body had responded, and we were overwhelmed with hope and gratitude. Most may feel like the toughest part was over, but the mental battles were only just starting.
After treatment, there was a huge discrepancy between how I expected to feel and the reality. Everyone’s lives were moving on, whereas mine stood still. I was struggling to come to terms with being thrown back in my life as it was before. It was difficult to feel good about things, whilst I was still haunted by what I’d been through and what the future may hold. It became difficult to move on with life, with the uncertainty of the word incurable hanging over me. I was constantly worried about when it would come back and having to re-live the whole ordeal of treatment. I struggled with questioning every little symptom or strange feeling in my body. It would take my mind straight to the thought, “is it back?”.
After receiving some support for the psychological challenges, I was able to start working my way back towards a better place mentally and help me come to terms with my reality. It was incredibly helpful to go through this process and has helped me get my life back on track. I am now able to be more positive and look forward with hope, despite the uncertainty of an incurable diagnosis.
After so many challenges and tough times, in August 2022 we had something very exciting to celebrate, we got engaged, which was one of the most wonderful days of my life. It felt like a huge milestone and a celebration of the love that had conquered the pain. We had made it through.
Unfortunately, 2023 started with the difficult news that I had relapsed, and my next course of treatment was expected for mid-way through the year. Leah and I initially had our wedding day planned for September 2023, which at this point looked very much in doubt due to me needing treatment. Fuelled by the positive outlook on life we responded to the bad news with action and tried to make the best of the situation. We were determined to get married before the next treatment and aimed to reschedule the wedding for April. Our plan was a success, and the new April wedding day went ahead.
This was a sign that taking positive action to not let cancer get in the way of what we wanted to do in life was paying off.
We felt very lucky that the wedding day was everything we could have ever hoped for. We had all our family and closest friends around us, the weather was amazing, and we had the best time. The day was filled with love and emotion, even more so because of the difficult circumstances that surrounded our lives. We felt a huge sense of love and support from everyone there, which made the day even more special. Just being able to have our wedding day against the odds, felt like a huge win in our battle against cancer’s impact on our lives.
Cancer has taken away so much, but what is has given us is a deeper meaning to life and appreciation of the good times.
The luck didn’t run out there, after the wedding I had a scan to check the growth of the cancer following relapse, to give an idea of when my treatment would start. To our surprise, the results showed that the growth had stabilised, meaning if things stayed this way, treatment wasn’t needed yet. We had more time.
The manifesting didn’t stop. Some more difficult news that came with my relapse was that the proposed treatment would mean I may not be able to conceive naturally. There was already a huge question if it was possible after my first course of treatment. We were advised that it may be now or never if we wanted to have children naturally. We knew this was something we wanted in life, so we were going to give it our best shot. Amazingly, luck was on our side again, by June 2023 Leah was pregnant, again against the odds. Our son Noah was born February 2024, and a new chapter of our lives had begun.
It is nearly 2 years since my relapse, my FL is growing slowly, but luckily there is still no sign that the next treatment is imminent.
Looking forward to the future, part of me is apprehensive for the future. With the word incurable in my life, I think part of me always will be. But the overriding feeling is one of hope and excitement for what is to come in our lives. Through the ups and downs of dealing with this situation, one thing our experience with cancer have given us is perspective, to be grateful for the little things and to not take anything for granted. Having the knowledge of how precious life is, we plan to take chances, live in the present, and make the most of each day. I have come to believe that only through pain, can you know the true pleasure in the everyday life that we once took for granted. Everything feels more meaningful now and this experience has unlocked that.
My wife Leah has given me the most incredible support in ways I could never have imagined. She has researched about my disease, talked to other patients, found out about new treatments, gathered information on anything that could help the situation, but also protected me from the details that are difficult to hear. She makes sure we are informed to make the correct decisions and allows me to focus on being in the best place mentally and physically. She keeps my spirits up and motivates me during the hard times. She encourages me to live a healthy life, keep my strength up, but also rest when recovery is needed. She has been amazing throughout this process, and everything I needed at the right time. I don’t know what I would’ve done without her, she has got me through the hardest of times. I feel very lucky and grateful to have such an incredible wife. Her constant hard work and support means everything to me. Her determination and passion to help me is beyond inspiring.
The mental side of cancer is not to be underestimated, it’s such a rollercoaster, but it’s so normal to have bad days and negative thoughts. I found it really useful to write things down during bad moments to help take the pressure off, clear my head, and get my feelings down on paper. It isn’t always possible to pull yourself out of those bad moments but doing things you find relaxing/calming can make a big difference. I try to acknowledge that I’m having a bad day and use some of the techniques mentioned to help me feel a bit better, but mainly just focus on trying to find a better headspace the next day. I think the most important thing is not to put too much pressure on yourself.
Regardless of the specifics, any cancer experience will be tough mentally, we are only human and there’s going to be ups and downs.
It took me some time to get to a place where I was comfortable talking about my cancer diagnosis and especially the emotional impact it had on me. The initial diagnosis came as such a huge shock that turned my life upside down. Initially I was struggling to come to terms with it myself, let alone openly talk to others about it. To start with, I only felt comfortable talking to my wife Leah about my emotions around the diagnosis. For a long time, it just felt like nobody could understand or relate to what I was going through.
My advice to others about sharing their feelings, would be to start with who you feel the most comfortable around, which may vary from person to person. Early on, sharing too much to the wrong people had such a negative impact on me, because I wasn’t in a place to deal with their response. It is your decision how much you share and who you share it with. The overall outcome of talking about your experience with cancer should be a positive one, that makes you feel better for doing so and lightens the load in that moment. If you have a safe space to talk and feel confident to do so, I would really encourage being open about your diagnosis and the emotions around it. If you don’t feel as though there is a safe space to talk, I would be open with those around you about your boundaries, which can offer some protection from feeling drawn into discussing topics in environments you don’t feel comfortable to do so.
In general, I believe it is important to stay as mentally and physically healthy as you can. Control the controllables and try to focus on the positives. Try not to let cancer get in the way of living your life but turn it into a reason to make the most of life.
To watch Andrew in our webinar about relapsed follicular lymphoma, please click here.
If Andrew’s story has inspired you and you wish to share your own personal FL journey – please complete our patient stories request form.
