Lily’s story
Lily Hemsley, 19, from Kent, doesn’t remember too much about the time of her diagnosis with a craniopharyngioma, or the surgery to remove it. She was only six years old at the time. A vivid memory she does have is of the cartoon sea scene on the cap her surgeon wore. She also remembers the “relief and joy” her parents showed when she was discharged from hospital on Christmas Eve, 2012.
Lily’s tumour was attached to her pituitary gland and was pressing on her optic nerve. It was removed through her nose, along with her pituitary gland. Now 19, and studying medicine at university,
Lily counts herself “incredibly lucky” that her tumour was operable, although she still lives with some of its effects: “As a result of the tumour, I lost three quarters of my vision, becoming completely blind in my right eye, and having tunnel vision in my left. Because I now lack a pituitary gland, I have to take hormone replacements for this. The experience was devastating, and completely changed my life.”
I will be forever grateful for the research that made my surgery possible.”
Lily
“I think there are psychological and social impacts of having a childhood brain tumour. I have always felt different to my peers, partly because I have to take more precautions, partly because I can’t do some of the activities that my friends can (e.g. driving, playing sport), and for other reasons too,” Lily says.
“Talking about having had a brain tumour and the current impacts on my life also seems to be awkward for other people – while I am used to talking about it openly now, some other people (not all) seem to distance themselves from me as a result.
“The biggest impact on me was probably the loss of my sight. I am visually impaired, with tunnel vision in my left eye and none in my right. In primary and secondary school this meant that I was limited in playing sports, which I think was quite harmful to being able to fit in and make friends.
“Now, it is the fact that I am unable to drive – although it is something that seems so small, when it is not a choice but a disability preventing me from driving, I really feel left out and isolated as a result. Being at university, I would benefit so much from being able to drive myself home to see my family, or drive to the shops for groceries, or even drive to the hospital where I have many of my lectures.
“Another impact is the never-ending burden of medications. I take four types daily (split into nine pills), as well as an injection four times a week, and extra injections in case I am seriously ill or injured. Although these are part of my routine now, they do greatly affect my life, and they quite often go out of balance so I feel tired or put on weight or experience other symptoms. Medications are not really a normal part of childhood, so I think having to rely so heavily on them prevented me from fitting in properly with my peers.”
My brain tumour inspired me to be a doctor!”
Lily
Lily freely admits that the impact of her brain tumour diagnosis has not been all bad. Her childhood experience of undergoing surgery, and being looked after in hospital, is what inspired her choice of career. She is currently in her first year studying medicine: “Since the age of about six, I have always wanted to be like the doctors that helped me, and to give back to others the great care that I received. My medical teams – endocrine, neurosurgery, ophthalmology, and GP – are who kept me alive and well, and I want to be that for other people in the future!”
Fundraising for The Brain Tumour Charity
Lily has been raising funds for the Charity, with family and friends in full support, for several years. She’s taken on various challenges, ranging from a run dressed as Father Christmas, to a 13 mile walk round London in the rain.
“While my life is by no means perfect and I still suffer many of the impacts of having a brain tumour, I feel so lucky and privileged to have survived. My tumour was benign, but it still could have killed me if it had been allowed to grow any more, or I could have lost my sight completely,” she says.
“From a young age, I have wanted to support the Brain Tumour Charity to raise money for research and support for people affected by a brain tumour. I know that there are plenty of people less fortunate than me, whose brain tumours are incurable or more advanced than mine was, and I think it is very important that more research is funded to help find cures for those individuals, so that they can continue living semi-normal lives like I was able to.”
Bake sales are definitely one of my favourite fundraisers! Most people love either baking or eating cakes, so it is a very popular fundraising option!
Lily
“I really love baking – I was taught to bake various things by my grandmother when my brother and I used to go and stay with her for a few days in the holidays, and it has always been an activity I really enjoyed. Holding bake sales allowed me to combine an activity I love with raising money for a charity I care about – win win! Also, we live on a main road, which meant that the footfall to my bake sales was fairly good, and we had customers who otherwise wouldn’t have known about my fundraising.
“We even ran a virtual baking event during COVID, where my friend and I live-streamed ourselves baking cakes on Instagram (@fundraisersbraintumourcharity), and also held a baking competition where participants could bake at home, send us a picture, and win £5 if theirs was the best!“
Lily’s top Big Bake tips
“First of all – I would suggest baking a range of different options, e.g. cakes, cookies, cupcakes, flapjacks, millionaire’s shortbread, etc., and some things that work for different dietary restrictions, e.g. gluten free, vegan, nut-free, dairy-free.
“Secondly, I would recommend holding an online fundraiser as well as an in-person bake sale. That way, anyone who can’t attend can still donate, and if people don’t have cash then they can donate online but still collect a bake in person! Also, online donations may be eligible for gift aid, so even more money goes to the charity!
“Finally, make sure to have fun! It can be quite tiring standing at a bake sale for hours, but make sure to fuel yourself with sweet treats, get some friends to join you, and enjoy yourself!”
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