Content warning: This blog post talks about mental health and disability.
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 Myeloid Leukaemia/myelodysplastic syndromes (MDS) in May 2018, when I was 17 years old. I’m now 20.
How did you notice you had it—for example, which symptoms did you first have?
I first noticed bleeding gums. I had been going to my GP since I was 15, and over time, I developed new symptoms such as migraines and even little red dots under my skin; I was extremely pale and suspected I was anaemic, but I had a GP who kept dismissing me and telling me to just exercise and change my lifestyle. But the red-flag symptom that made me determined to get a diagnosis was extreme night sweats.
Are there any experiences of treatment you would like to talk about?
I had many misconceptions about cancer and treatment. I didn’t realise that my weight would fluctuate, and regarding the hair loss, I lost ALL of it.
I’d joke around, saying that I had free Brazilians all year round and I didn’t have to buy shampoo for 12 months.
How has cancer affected your overall quality of life and ambitions in life?
I was at college, studying Media, Graphics and Photography. The cancer diagnosis completely changed my life.
Unfortunately, I’ve had to give up some of my hobbies, but I’m someone who loves trying new things, so I’m constantly looking for new interests and hobbies that are possible for me to do.
I miss doing my photography, but now I’m disabled due to treatment I have to pre-plan my journeys and check if it’s possible to do in a wheelchair. I knew I wanted to work in the media/creative industry.
I no longer have my independence. I rely on my mum and other family and friends to help me out.
I also had to drop out of college and still haven’t managed to return to finish my education.
It’s affected my friendship circle too; cancer teaches you who’s really there for you. I can’t drink alcohol or go clubbing, so I never get invited out anywhere.
What are the side effects most difficult to deal with?
Personally, the bone pain was the worst, and I’ve ended up with IBS after my treatment. I can’t enjoy a KFC anymore as I can’t tolerate certain foods now.
A side effect that I like to warn newly-diagnosed patients who will be having chemo about, is to not trust a fart! I thought it was embarrassing and I carried a lot of shame, but soon learned it happens to everyone and is not my fault. I had many, many accidents but you learn how to get around it and avoid future incidents.
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?
My life is so medical already, yet despite it being cliché, doing something creative helps me to “escape” from that side of my life. When I finally do a piece of art or get writing done, it feels like a massive accomplishment for me.
If you wish to talk about it, how has cancer changed your love/sex life, intimacy and so on?
It had a massive impact. My treatment put me into chemical menopause.
I’ve not had a period in three years, which might sound like a glorious thing, but it’s actually not.
Since my ovaries were affected, so were my hormones; I had no sex drive and my womb had shrunk due to going so long with oestrogen deficiency.
The idea of being sexually active after treatment was really daunting for me and even when I tried to pleasure myself, I hurt myself in the process. I had to discover my body all over again.
It took a lot of courage, but I sought sexual health advice specifically for cancer patients. Since there was a lack of information, I wasn’t provided with a lot at the time, but luckily, the nurse I saw had set up a women’s health clinic and she provided me with enough education to give me a little bit of confidence back.
I found a Facebook group for menopausal women which was extremely helpful since it’s full of specialist advice.
Whenever I have treatment that lowers my platelet count, I’m not supposed to be sexually active, so I was basically banned from sexual activities. It was like I had a hypothetical chastity belt put on me. Between the age of 13-16 I had had a pretty wild sex life, however now that I’m menopausal, I don’t crave it like I did back then.
HRT has certainly helped but I don’t think about sex constantly like I did during my teenage years. I’ve had partners after treatment and not all of them have been understanding about my menopause—some understand that it can be painful and that I can’t have long “sessions”. Lastly, I used to hate lube but now I have no choice—I can’t live without it!