Raising awareness of cancer – Maisy’s story
Today, Thursday 4 February 2016, is World Cancer Day and it is all about taking a positive and proactive approach against cancer. At RNC (The Royal National College for the Blind), we work with young people with visual impairment and one of the most common causes of visual impairment is through cerebral visual impairment, the brain’s inability to process information from the eyes. We speak to 18 year old Maisy McAdam, from Looe in Cornwall, who shares her experiences.
Maisy was born with Neurofibromatosis type 1, which is a genetic condition whereby tumours, normally non-cancerous can grow on the nerves. Maisy says “Although I didn’t have cancer, there is no ‘World Tumour Day’ so I’ve decided to share my story today. I think raising any awareness about cancer and health is important, it’s normally when a celebrity has cancer that people start talking about it and taking action. I remember after Kylie Minogue was diagnosed with breast cancer, the numbers of women going to get tested went up so something positive came out of it.”
In 2012, during a routine eye appointment, an optician noticed that the sight in Maisy’s left eye had significantly deteriorated and she was immediately referred for an MRI scan which revealed a tumour on her optic nerve and caused her to lose the majority of her sight. “Everything happened so quickly, literally a week and a half after my diagnosis I started chemotherapy, it lasted nearly two years and I was off school for most of that time. I was on three-weekly cycles and because I have so many allergies the sessions would last six hours. I would pretty much sleep solidly for a week afterwards; I was so ill and couldn’t even walk.” Once the chemotherapy sessions started, Maisy lost all of her hair and would wear a wig on the days that she left the house, she dramatically lost weight and at her lowest she weighed just 5 stone.
The chemotherapy ended in July 2014, two months before Maisy became a student at RNC. “I have a great group of friends here, there are people who I can have a laugh with and banter but there are also people who I can have serious talks with. Back home I didn’t really talk about my condition much, if you’ve not been through it then you don’t want to hear me going on about it. It’s different at RNC, while not everyone has gone through the same things as me, it’s definitely a lot easier for us to understand each other.” During her second term at RNC in 2013, Maisy took her wig off in public for the first time. “I was really scared to take off my wig and hated having no hair; I was really self-conscious about it. Not everyone recognised me at first but everyone was really supportive of my decision. People at RNC are so open and accepting, I feel like I can be myself here and no one is judging me.”
Looking back at early photos of herself, Maisy says “I hate looking at pictures of myself when I was on chemo, it’s ugly to see someone looking so physically ill. My arms were so skinny and I looked really unhealthy, I didn’t like the fact that people could tell I was ill just from looking at me.” It was around the age of 9 or 10 that Maisy first started wearing glasses and now thinking back she says “I guess the tumour had started affecting my optic nerves from then but people just thought I had a lazy eye. I had always read large font size and struggled to see the board in class but I didn’t really think anything of it, I didn’t think it was anything I needed to do anything about. I don’t want other people to make that mistake – it’s so important to get things checked out.”
Now, a year and a half after finishing chemo, Maisy says “It’s not massively likely that the tumour will come back but I suppose, with the condition I have, there is always a chance. I try not to think about it and although it still affects me, it’s not every day. I have friends here at RNC who support me and I just want to get on with things, staying healthy and positive.” The main message for World Cancer Day is I Can, We Can, exploring how everyone whether collectively or as individuals can reduce the burden of cancer.
Article written by Bik Lee, Digital Media Officer at RNC