Cancer's Chastity Belt - By Caitlin Wilde
Cait, who was diagnosed with a form of Leukaemia when she was 17 years old, shares her experiences, thoughts and campaigns on her vibrant Instagram page @caitswidlecake. Since her treatment ended, Cait has been campaigning to improve sex advice and information for people with cancer who want relationships and intimacy. Cait has also worked with other young cancer survivors to create an online Art Zine, titled ‘Candid Collective Zine’ aiming to bring a more humorous approach to the idea of sex and cancer.
Hello! I’m Caitlin but I usually tell people to just call me Cait. I’m currently 20 years old. Back in 2018, when I was 17 years old, I was diagnosed with Acute myeloid Leukaemia. I had a bone marrow transplant the same year right before Christmas. I had to put my education on hold due to treatment but, during my free time I like to engage in raising awareness on life after cancer. I hope I can improve the quality of life for future cancer patients and offer some advice for those who are still struggling. I actively engage in meetings with medical professionals, and I make myself vulnerable by sharing the impact cancer has had on me personally. Talking on matters such as fertility and sexual health, so that future patients won’t have to suffer in silence like I once did.
When I was 15, I thought I had begun to lose passion for dance and sports. I developed intense migraines, I had a pale complexion, fatigue and even bleeding gums. I dropped activities due to my fatigue. I kept arranging appointments with my GP, told every time it was my teenage hormones and that I needed to change my lifestyle despite being someone who used to be so active. I was put onto antidepressants, told I should attend CBT, given propranolol for anxiety and my migraines and all it did was cause my symptoms to get worse. My pain got so bad that when I went to A&E at 16 and had my first blood test. They discharged me with morphine, which I became reliant on and addicted to. I attended A&E a second time, just days before my 17th birthday, due to intense pain in my side. I had bloods done again and was told that my high white cell count of 40 was due to a kidney infection. They assumed it was caused by me being sexually active (even though I told them I wasn’t at that time) and “just a random thing that happens in young people”.
My family weren’t taking no for an answer so I changed GP and saw a doctor who didn’t dismiss my symptoms and wanted to carry out his own set of blood tests which led me to having a referral to a haematologist, a bone marrow biopsy and a diagnosis of acute myeloid leukaemia on the 31st May 2018.
Finally having a diagnosis was a relief, despite it being a devastating prognosis. I no longer felt like I was crazy or just a depressed/lazy teenager. I was too sick to freeze my eggs and I had to start treatment ASAP. From diagnosis, I started inpatient chemo in less than 2 weeks. I knew my treatment would affect my fertility, but I didn’t know how the consequences of my treatment would affect me physically and mentally. The consent form had an extremely long list of possible risks and side effects, it even included the potential for mortality, but I glossed over the fancy medical lingo and signed it. I just wanted to get on with treatment and return to “normal” as soon as possible.
My first cycle I was an inpatient for 5 weeks, I went home for 2 weeks then had a biopsy to discover that the first cycle didn’t do as well as we expected. I was admitted again for 4 weeks to try a regimen called FLAG-IDA, this cycle was much easier than the first and I think it’s because I learned how to manage the side effects better that time around. I returned home again before having a biopsy again which revealed that I was successfully in remission, the next step was to prepare for a bone marrow transplant which was originally planned for October 2018. Unfortunately, my brother wasn’t a match, I had to turn to the Anthony Nolan charity for a stem cell transplant donor and I had 3 potential matches. All the preparations were set but due to my donor needing surgery, my transplant had to be delayed until November. I was admitted 23rd November 2018 for 5 days of intense chemo and 4 days of TBI (total body irradiation) twice a day before receiving my donors’ cells. Engravement happened within days and doctors were happy to discharge me 21st December 2018 just in time for Christmas. I rang the end of treatment bell and I thought that was it, it was all over and I could go back to normal at that point.
Reality is, once you ring that end of treatment bell, it really doesn’t end there.
The first several months were positive for me. Despite doctors advising against getting a puppy, I did exactly that when I was 4 weeks post and now, she’s a happy and healthy 3-year-old pug called Nugget. She gave me a reason to get up every morning.
Over time certain “feelings” started to return and by “feelings” I meant my sexual desire. One night I kept tossing and turning and struggling to sleep, I tried to engage in something that used to be so normal for me at bedtime, something that I like to view as another form of self-care: masturbation. However, something unexpected happened. I wasn’t getting any pleasure, and I was drier than the Saharan desert. I kept on trying, but consequently ended up hurting myself before I finally gave up. It wasn’t as fun as I remembered and didn’t feel good like it used to either. I felt quite ashamed and like my body was broken, I couldn’t grasp why it wasn’t like it used to. I’d finished treatment and so I thought other things would start to return to normal including my nightly “me” sessions.
This was during a time leading up to my 18th birthday. The legal age to buy adult toys is 18 and had been looking forward to the day I could finally indulge in buying the luxuries that only adults get to. Although, there was a slight problem and that it was because I had felt broken down below and no matter how many times I attempted, the shame and fear kept growing and growing. I became increasingly worried of how it would affect my future; I went through treatment single, but I didn’t know how I could explain my problem to a partner if I didn’t fully understand it myself. It was like a hypothetical Chasity belt had been placed upon me, and now I would live a life of celibacy.
My desire for being in a relationship one day was far greater than that so I knew I had to mention something, anything, at one of my appointments. I was unsure of how to approach the subject matter or explain that I had hurt myself. Throughout my teenage years it was always seen as normal for boys since “boys will be boys”, but I thought female masturbation was something to be ashamed of which is why I was secretive. I didn’t feel comfortable talking to my own female family members about these kinds of things, which is natural when you’re a teenager going through puberty who was still exploring their body and their sexuality, before the cancer diagnosis put all of that on hold.
I finally gathered the courage and asked for a few minutes on my own with my transplant doctor, I explained I was having a few “women’s issues” and I am thankful that I did. Since it wasn’t her specialty, she knew that a nurse at our unit ran a women’s health clinic just for stem cell/transplant patients that same afternoon and was able to fit me in. I went into that appointment quite anxious, but by the end of it, I was more educated and felt more confident about my own body. I was finally regaining control. I had so many questions, and she was more than happy to answer them. She showed me compassion no matter how lewd or ridiculous they were, I didn’t feel judged. I told her about how I was interested in investing in my own vibrator since I was nearly of age but was worried of hurting myself. That’s when she presented me with something known as a dilator, told me about the various types of lubrication and told me how I can practice it safely from now on.
Although she recommended me a vibrator that was “approved” for menopausal women, I thought it seemed quite plain and I always dreamed of the day I’d buy an exciting and brightly coloured one of my own. Thanks to her sincere compassion, non-judgemental and candid attitude, I was able to confidently rediscover my body, and regain control once again. A huge weight had lifted and something that was important to me as a young woman was restored once again.
Not every young woman has access to this kind of education and support. It breaks my heart to think there could be many others out there struggling to regain control during and after their cancer treatment. This is why I share my story, to reassure others that they are not alone; that there is support out there that can help them regain control and no longer feel left in the dark.
Find more from Cait, on her instagram page @caitswildecake
