It’s been two years since I rang the bell to signal the end of my treatment for leukaemia.
It began with night sweats and I was pale for months, with my doctor saying it was due to my hormones and my diet. It wasn’t until I changed my doctor that I was taken seriously.
A bone marrow biopsy revealed I had acute myeloid leukaemia. I’d never heard of it. I didn’t even know there were different types of leukaemia.
I was already very ill and was transferred to the regional teenage cancer specialists at The Christie. Their priority had to be to save my life but that meant I didn’t have time to have my eggs frozen to preserve my fertility. When I was told I wouldn’t be able to have children I was in shock.
I had multiple cycles of chemotherapy as an inpatient and a bone marrow transplant. The transplant went well, and I was allowed home just in time for Christmas. It was nice to be able to celebrate with my family, my cousin and my aunt and uncle though. I got a comb in my cracker, which everyone thought was hilarious because I had no hair.
Luckily my body accepted the bone marrow, but that left me with survivor’s guilt as I know other people whose bodies rejected theirs or they’ve relapsed. A lot of people also think that when your treatment has finished and your hair grows back that everything goes back to normal, but for me the recovery has been much harder.
During treatment, I was so focused on getting rid of the cancer. I knew I’d be infertile. My periods would stop. I was thinking about my bone marrow transplant not working or relapsing. I never thought about the menopause.
I started getting a bit sweaty and the first thing I thought was, I’ve relapsed. When I asked my doctor, she looked my blood test results and said, ‘oh you’re menopausal’. That was it. And I thought, ‘oh right, okay. The menopause makes you bit sweaty.’ That was it. And I kind of just went on with my day.
I never really thought about my health after treatment. I thought once the cancer was gone, that was it
Eventually it got to the point that the fatigue and sweating was getting too much for me, so I was sent to see an endocrinologist.
In the waiting room, I saw this big poster on the wall showing how menopause can lead to osteoporosis.
That’s when I realised oestrogen deficiency can have a huge impact on your bones. I never realised the menopause could bring about so many health issues. I recently spoke to woman who’s fifteen years on from bone cancer. She’s had to have a hip replacement because she wasn’t given hormone replacement therapy.
After one appointment, I managed to roll my ankle getting up from a chair and broke a bone in my leg. It shows how fragile the treatment can leave you.
There’s very little support for people with early menopause. It’s a cause I’m passionate about. Since going through this experience, I’ve been able to work with the Teenage Cancer Trust support workers at The Christie and with patients from the nearly Clatterbrigde Cancer Centre to develop a leaflet about fertility and cancer treatment that is specifically aimed at young people. Hopefully, this will help other young cancer patients to understand what options are open to them.
I went back to college, with people two years younger than me. Everyone knew I didn’t get periods because I was menopausal but that didn’t stop them always bringing up kids around me. My mental health got worse and I felt really lonely. My Teenage Cancer Trust Youth Support Coordinator had been with me throughout my treatment and recovery and I knew she would be able to help so I approached her to arrange some counselling for me.
I have accepted now that I won't be able to have children and I will look at adoption when the time comes. I’m really passionate about raising awareness of the possible effects of treatment on fertility, and I think young people should have information about the risks much earlier on.
Once you ring that end of treatment bell, the story doesn’t always end there.