It all started back in November 2015 when I was putting on a jumper and felt a weird lump in my neck. I was 21 and in my final year at university and like every other student, I was burning the candle at both ends. When I went back to my mum’s house just before Christmas, she took one look at my neck and said she knew something wasn’t right. While she immediately offered Sudafed, Lemsip and paracetamol (the usual medicine-cabinet offering) in case I had some sort of virus, I had been living with the lump long enough to do my own research via the internet which is never a good idea. Cancer runs deep in my family: my dad died from a brain tumour when I was 14, my mum had breast cancer, and my grandparents had cancer in one form or another. My self-diagnosis was lymphoma of some sort, and given I am by no means a medical professional, I concluded that I didn't have long to live.
After a trip to A&E I was told I was going to be referred to ENT. I had a very bad feeling about it and Christmas was strange as I felt like I was in limbo and not quite myself. After my ENT appointment, I was booked in for an ultrasound and a CT scan. It was during the ultrasound that I was told, “it looks like non-Hodgkin lymphoma to me.” The technician didn’t realise this was the first time I had heard this from a professional. I burst into tears and phoned my mum, who was mid-grocery shop, and we were sad together for a bit.
The next few weeks were full of blood tests, scans and a bone marrow biopsy. More CT scans followed, where I was injected with a radioactive isotope to highlight the cancerous cells. It makes you feel like you’re wetting yourself and you have to stay completely still (which is torture for a serial fidget like me) while the giant magnet whirls around for 30 minutes. I was told not to touch pregnant people or anyone under 18 for a few hours, and I now must have irradiated blood if I ever need a transfusion.
After all the tests, scans, appointments and blood tests, it was confirmed: diffuse large B-cell lymphoma. Being female, I was talked through the consequences of chemo including losing my hair, possible infertility, freezing my eggs (an intense conversation at 21, especially when there wasn’t time anyway), having no immune system, and all the extra sickness that comes with it.
Overall, though, the prognosis was good, which helped massively. I was young, generally fit, and previously healthy which was a good starting point for the big-gun chemo, R-CHOP, which I was told is very effective against non-Hodgkin lymphoma in young people.
Whilst waiting for my first oncology appointment, I went back to university. My final term had started and I needed to pack up my house and speak to the university about how I might continue my final year during treatment. But this is where things deteriorated. The cancer grew and began blocking my windpipe. I was struggling to breathe and my face was swollen. I went to A&E, and was urgently admitted on 4 February 2016, which coincidentally is World Cancer Day. I needed an emergency biopsy, a bout of steroids, and my first round of chemo.
After six rounds of chemotherapy every three weeks (with one extra week when my bloods weren’t behaving), the follow-up appointments began. First, they were monthly, then every three months, and then every six. Eventually, they stopped altogether and I was told I was officially in remission and have been ever since. My takeaways:
- Chemo is not what I expected. I didn’t realise it involved sitting in a chair wired to a drip for six hours — I thought it was a quick zap and off you go. Bring entertainment, and company (although warn company that you're sat in a room of a lot of other people who can’t afford to catch any germs).
- I lost all my hair. Showers were the worst when your hair is falling out as it's in clumps which was itchy and distressing. Wigs itch, and being bald is freezing. My favourite hat was essentially a teacosy and I wore it 24/7. My hair grew back thicker and very curly at first — I’m not complaining!
- Chemo smells awful. Towards the end, I started vomiting before treatment even began.
- You get poked a lot, and eventually nurses tell you they can’t find your veins.
- People feel sorry for you — which means lots of flowers and gifts!
- Being positive helps — not just you, but everyone around you.
- Family, friends, and a support network were everything.
- I’ll never sleep a full night again. Ten years on, I still wake up in the middle of the night, and I can't quite figure that one out!
- I still check my neck for lumps and have convinced myself it’s returned more than once, which resulted in a few GP visits. Thankfully, you get appointments very quickly.
- My immune system is still rebuilding, and the anxiety was very real for a few years.
Other than that, I’ve done everything every other 'normal' young female has done. And all in all, it wasn’t that bad. I’m sharing this now, ten years on, because I’m very much alive, kicking, and enjoying and embracing life.
Check yourselves for lumps. Get the niggle seen. If you have cancer, it's traumatic, stressful, and upsetting — but once you get through it, you feel pretty invincible.