Content warning: This blog post talks about mental health, anxiety, body image and suicide.
Welcome to an introduction to the Candid Cancer Collective team!
What is the specific type of cancer you had/have, and at what age were you first diagnosed?
I had Acute Lymphoblastic Lymphoma (ALL) which is a form of fast-growing, aggressive non-Hodgkin Lymphoma and I was diagnosed at 21.
How did you notice you had it—for example, which symptoms did you first have?
I was in my final year of university, and I started experiencing pain in my back/chest. Funnily, I thought it was the quality of my mattress and I was going on at my landlord to get me a new one.
Then I got what I thought was a really bad cold and completely lost my appetite, which for me is when I know something is wrong (I love food).
I became really breathless and couldn’t walk up the stairs, but at the time we were looking after a friend’s cat and I’m allergic to cats so I thought, ‘This is why I’m breathless!’
It became worse, and I ended up going to an emergency doctor on the weekend. They said that I had a chest infection, so I got antibiotics and started taking them. My mum came up to university to collect me and take me home to look after me whilst I got better.
After a couple of days taking the antibiotics, I was only getting worse. The pain in my back and chest was so bad. I was being sick often and couldn’t breathe properly at all.
My mum called 111 and they asked me to come to A&E immediately.
We spent a night in A&E having tests, and I was put on oxygen before I was moved to the respiratory ward. I had a collapsed lung and about eight litres of fluid was drained from my lung over the next week.
They told me I had a 10cm mass in my chest which was pressing down on my lung which caused it to collapse. They had to take a biopsy of it, and when the results came back this is when I was told that it was cancer.
Are there any experiences of treatment you would like to talk about?
As a complication during my treatment I had a blood clot on my brain which caused a stroke and multiple seizures, from which I almost died. I want to speak about this because it’s something I feel is not spoken about.
The chemotherapy I was having to save my life was also what caused me to nearly die. I was told that if I were to not continue this specific chemo drug, my chances of survival and remission were extremely low. This drug had worked effectively without this side effect for most people—what happened to me was actually one-in-a-million, and there was barely any research for what to do when this happens.
The doctors acted on what they learnt and told me what they believed is best. They cannot predict how each individual will react; they only know what has happened and what happens for most people, but that isn’t to say that other anomalies won’t occur.
I lost control over the right-hand side of my body and had to learn how to use it again. Being young worked in my favour and I was able to regain complete control over time.
I had an out-of-body experience during one of my worst seizures. I was floating over myself, looking down and watching myself contort, all whilst I could feel my body parts tensing, stretching and spasming out of my control.
I lived my experience from outside of my body like I was frozen in time, whilst I was technically unconscious.
This experience caused PTSD, as I was in constant fear of having another stroke and dying.
I was lucky to have an amazing NHS therapist at the time that helped me work through it and create healthy coping and rationalising techniques.
How has cancer affected your overall quality of life and ambitions in life?
To be completely honest, cancer completely killed my ambitions in life. I was in university studying Fashion Communication and I had always dreamt of working for a fashion magazine or designer. Cancer made my career path seem stupid—I thought, ‘What’s the point in this?’
Suddenly I didn’t know what I wanted to do. Cancer was my life for three years, and it’s really hard for that to not affect the overall quality of your life.
Mentally, my maintenance period was the hardest because I was no longer in hospital every day like I had been for the past seven months. Hospital had become my safety blanket and my identity, and I didn’t know who I was without it. I now had life beyond me again and all I felt was intense fear of everything.
I developed agoraphobia and would have panic attacks every time I tried to leave my flat. My main ambition was just to be able to feel normal again to be honest, and start experiencing some sort of quality of life again.
I was linked with an Occupational Therapist from the Teenage Cancer Trust ward, who helped me no end. I am forever grateful. All I can say is: if you are struggling with anything in life, there is something out there that can help you just by talking it through and creating small achievable goals.
It’s taken me years to feel somewhat normal again, and there are still parts of me that are not yet healed. Coronavirus has been a massive setback for me and any recent remission cancer patients, as once again, we’ve been told to isolate. I am used to this process so it wasn’t a massive shock to me, but it has been very triggering, especially hearing so many able-bodied people complain about wearing masks and basic things that seem so minuscule in the scheme of things.
What are the side effects most difficult to deal with?
I really struggled with sickness throughout my cancer experience. I had to take really strong anti-sickness tablets which would basically knock me out, because you can’t feel sick when you’re asleep, right?
I love food so much, so not being able to find enjoyment in food for years was really sad. My diet was plain white toast for months on end.
I also really struggled with steroid side effects. I experienced light sensitivity migraines which meant I would have to lie in the dark for days, water retention specifically around my knees which was excruciating, as well as extreme rage, sadness and suicidal thoughts.
What do you hope would be a positive thing to come out of creativity such as making a zine, or any other creative things you do?
All the artwork I create now as an artist stemmed from my identity struggles when I was ill, so I guess my work wouldn’t be what it is today without it.
Art was the thing that kept me going through cancer. I made marbled papers and collaged for days upon days, made polymer clay jewellery, and started drawing abstract faces to represent how I felt. These processes helped to not only fill the days between treatments, but to take me out of my anxious mind and into the present moment.
I appreciate my creative mind for helping me survive in a time of crisis. I hope to continue to use art as a tool throughout my career, and to hopefully help others in need in similar situations.
If you wish to talk about it, how has cancer changed your love/sex life, intimacy and so on?
It had a massive impact upon my sex life.
Personally, for me, treatment meant that my libido was practically nonexistent; luckily, I was with my current partner, and he never minded or put any pressure on me.
Because of the drastic changes in my body image, from losing loads of weight to gaining loads of weight from steroids, I lost sense of who I was and felt completely disconnected and uncomfortable in my physical body and identity.
I think this was the main thing that impacted my sex life because I didn’t feel sexy anymore—I saw myself as ill and I didn’t understand why my partner would even want to have sex with me.
I am lucky to have had such a supportive, amazing partner throughout my journey.
Our relationship grew so much in all other areas outside of sex; he saw me at my weakest, most vulnerable points and still loved and accepted me, so our emotional intimacy blossomed.