After three months of severe pain and mis-diagnosis, I was diagnosed with Ewing Sarcoma at 16. Eight years later, I was diagnosed with breast cancer - a direct result of the radiotherapy treatment I’d earlier received.
The two journeys were completely different, which is one of the reasons I wanted to start sharing different people’s stories. I believe they offer insight into the various effects of cancer and it’s treatment, how it impacts each patients’ life differently, and what supporters can do to meaningfully help.
Here’s my version:
It’s really hard to try and condense my year-long (first) cancer journey into a few paragraphs and cover all the side-effects I had from treatment, but here are a few:
I went from a 16 year old in high school with hardly a worry in the world, to only being able to eat through a stomach tube, losing a dramatic amount of weight, and unable to swallow without severe pain because my whole mouth and oesophagus was ulcerated - all within one week.
The nausea hit day one of the chemo treatment. After about a week I found that even the scent of food, flowers, soaps and moisturisers would be enough to make me physically sick.
The loss of weight and hair meant I was always cold. I got used to always taking a duvet cover to the hospital with me (this always made it a little more homely and comfortable as well), and an unscented heat pack, which helped with the cold and any pain from surgeries or the tumour.
I spent the majority of the year in a hospital bed, and was too weak to get up and move around much, so it was no surprise I would often get bed sores. When I started radiation, my skin got quite itchy and dry as well.
Fortunately, I had an incredible support base while I was having treatment - especially my family. We lived on a small farm in Eketahuna - 2 hours from where I was having treatment in Wellington. Mum quit her job to be with me every single day, and I honestly don’t know how I would have done it without her. Dad would visit most weekdays, and then again all weekend. He has had cancer twice - he clearly understood. Having them there was HUGE, even if they were just sitting quietly with me - that was exactly what I needed.
I couldn't be around many other people - something that was important for people to realise. “Chemo brain” made it almost impossible to concentrate on games & books, and I had no energy. There was one nurse who understood, and would often sit with me at the end of her shift for a while, not saying anything at all. That small gesture made a world of difference.
Laughter and jokes were among our ways of coping. We kept really positive - even when things were really shit - and made light of the whole situation when we were together.
There was really nothing to fill my time. I couldn’t concentrate on TV, books, crafts etc. I couldn’t eat or move about because I was so sick. Really, all I had to occupy me was the people that I allowed to be around me. Those interactions were my lifeline.
I don’t remember feeling scared or angry when I was diagnosed. In fact, the hardest thing was going back to school and integrating back into “normal life” once in remission. I worried about how my peers would view me, and hoped that no one would notice me or make a big deal. Some would exclaim “What happened to you?!” while others would completely ignore me. I knew it was because they didn’t know how best to react, but it still hurt. My already low confidence plummeted.
Eventually came the debacle of not wearing my wig to school. I remember being so terrified of what my classmates would say. How ridiculous - after a year of having no hair, eyebrows or eyelashes, countless surgeries and hardship - I was more terrified of that than anything else! As a then 17 year old, there was so much pressure to care for boys and makeup, but I couldn’t relate. Frankly, I didn’t give fuck about any of that, so found it really hard to fit back into my pre-cancer life.
Don’t get me wrong - I had some amazing, supportive friends and teachers (one teacher even joking they’d beat up anyone if they made fun of me!) but even with all that support, I struggled so much more being back at college than I ever did through my year-long battle.
Fast forward 8 years: I was 24, had finished a fashion design degree, started a job, and was in a long-term relationship (with my now fiancee). I didn’t think much of my regular checkups, until my doctor told me during one visit that she thought she could see a lump in my breast. A biopsy confirmed it was cancerous, and then I had to make a decision: whether to have a lumpectomy or a mastectomy. It was a no-brainer for me - I decided I’d have the whole breast removed, to be safe.
Recovery from the operation took around a month. I had a skin graft from my leg to help cover over my chest, and some muscle and skin was moved around from my back. Pretty incredible! Or perhaps, sickening, if you’re squeamish?
It was insane to me (after my first year-long experience) that you could find out you have cancer one week and then be in remission the next. I joked that it was a walk in the park the second time around - they just lobbed it off and away I went. Physically, that was true, but mentally it was much worse. Or perhaps it was both cancers compounding?
I really struggled with anxiety and depression, and coming to terms with the fact that doctors likely will not be able to perform reconstruction, based on some ribs being removed in my earlier treatment.
My partner was amazing through my second cancer. While I didn’t understand how anyone in their 20s would want someone that felt deformed, ugly, and lacking confidence, he stuck by me. Again, having someone to drop everything to support you can be the make or break.
When I write these for other survivors, I always ask what the positives are you’ve taken from the experience. My response: I now have so much gratitude for my family and friends, and seeing that in others has changed me as a person, for the better.
The support I got from others inspired me to start Battle Box, so I can pay it back. All of the side-effects I’ve mentioned have inspired the contents of my Battle Boxes. I believe, based on my own experiences, that these are gifts that will meaningfully help someone battling cancer.