Shock diagnosis
In November 2019, Kirsty McCloskey, now 25, was in her final year at Dundee University when she suddenly began to experience debilitating headaches, vomiting, visual distortion, numbness and difficulties balancing. GPs and hospital doctors put these symptoms down to migraines. It wasn’t until February 5th, 2020, that she was offered a scan.
The scan, at Perth Royal Infirmary, discovered a tumour the size of a satsuma – a pilocytic astrocytoma – on her brainstem and cerebellum. Kirsty needed an emergency operation to save her life.
Just weeks before, Kirsty had been working in the same ICU department she was rushed to as a patient. She explained: “My diagnosis came out of the blue, but I’d had bad headaches since I was about ten years old. I was told I’d had the tumour since I was a child.
“By the time it was discovered, things were at a dangerous stage. We were told that the operation had to happen the following day. The surgery took 11 hours, and although they were able to remove 95 per cent of the tumour, that one last little bit remains.”
“After that first surgery, I was in a wheelchair, not able to see properly, stand, walk or move my right arm. It’s been a lot of hard work to try and get better.
Kirsty
Rehabilitation
The operation saved her life, but also left Kirsty needing a very significant amount of rehabilitation to recover her movement and co-ordination – something she continues to work hard on to this day, almost six years later. “After that first surgery, I was in a wheelchair, not able to see properly, stand, walk or move my right arm. It’s been a lot of hard work to try and get better. I can now walk unaided inside the house, and outside with support from family and friends.”
Fundraising support from her local community enabled Kirsty to spend time at private neurological rehab clinics, in Hull and Bristol, where she was able to use specialised robotic equipment to help with balance, strength and co-ordination. She spent seven months at these clinics in 2021 and 2022. Kirsty said: “My community put on a big sponsored cycle event in 2021. It involved 150 cyclists cycling continually for 24 hours in different teams to raise money – and we also managed to donate £2500 to the Brain Tumour Charity from over 800 separate peoples’ donations.
“I’m forever grateful to everyone who fundraised. I wouldn’t have had this help otherwise, because my time at these centres cost nearly £80,000.
“Now, I do one hour of physio (this is is neurophysio and mainly balance specific exercises) four times per week and I have done so for about five years now – until recently I used to do it every weekday morning, but I cut down to four because it’s very repetitive and I needed a break. I hasten to add, the repetition is just the nature of neuro physiotherapy, and no reflection on my wonderful physio, who is honestly amazing – she’s extremely knowledgeable and has come to see me at my house every week day for five years!
“I also have a PT at the gym who I see a few times a week on top of that. The gym sessions focus mainly on strength and cardio, which I prefer as it’s easier to see an improvement in this. I also practise walking in my spare time.
“I’ve had a lot of speech therapy over the years, for my facial muscles – and I also used to have to do occupational therapy for my hand, because my right side has a major weakness – so I spent years doing hand and finger exercises and practicing my handwriting. I am naturally right-handed so this was not easy! I can write a little bit now (quite messily!) but it still makes my hand cramp up. I can also move and use my right hand much more now, but it still gets fatigued much quicker than my other one and is a bit uncoordinated. Therefore I have to use my left hand way more than I used to, so I also had to practice using my left.”
It’s been a huge thing to come to terms with – a major life change.
Kirsty
Another legacy of the tumour has been damage to her eyesight. Kirsty now lives with permanent double vision as well as facial palsy, but these things are harder to improve:
“My rehab now is just physio and exercises really because I had to prioritize all my issues and look at what I could actually improve myself, and what was most important to me. So not my facial paralysis, eyesight problems or my weakness in my right hand. Although these things are hugely important as well, they cannot be fixed any more than they have already and some of them not at all.”
Kirsty’s had seven further surgeries since that first one – and may soon have to prepare for another, on the tear duct in her eye. She said:
“It’s been a huge thing to come to terms with – a major life change. Having been so close to finishing my nursing degree, I wasn’t physically well enough to continue with my studies.
“For a few years I did think that I was going to get completely better, but when I met with my neurosurgeon in 2022, he told me that with hindsight he would not have tried to remove so much of the tumour because in doing so, he removed too much healthy tissue too. So for me things were not improving as quickly as the people that I would see online. This was very hard to deal with.”
PigsnThings!
Kirsty’s been busy with more than her rehab. Inspired by some pig plushies she spotted on a family holiday in Tenerife just before her diagnosis, she makes all manner of pig-related items – think greetings cards, body scrubs, wax melts, and soft toys – and sells them on her stall at local markets. The proceeds help Kirsty pay for her physio and gym sessions, and she’s also started making donations to The Brain Tumour Charity. It all began with that first pig plushie! “After my operation, my mum brought it to the hospital for me. When I got home I found out you could buy different sizes of it. I kept thinking the different sized pigs would be such a good base for a little business.
“I briefly looked online for ideas and was surprised at all the pig-related things you could buy and make. I thought I could join this together with my love of making my own skincare and I could make it into something. Eventually my mum just persuaded me to go for it and try and sell some of my handmade things along with the pigs at one of our local markets.
“I’ve now been doing it for almost two years and it’s going great! I still only do local markets and I just advertise on Facebook & Instagram, and if people want to buy anything they can just message me on there and I will post it to them.”
Kirsty’s currently busy prepping for Christmas and has a few markets lined up. What would she say to someone coming to terms with a brain tumour diagnosis, as she was?
“I’ve thought quite a bit about the advice I would give to others that are in a situation like mine, and it’s really hard to say because I don’t claim to be this positive person, I just try to deal with things in the best way that I can.
“For me, that’s trying to do something that I enjoy or makes me smile everyday, so for me that’s watching an episode of a good TV series, cooking a new recipe, baking some muffins, listening to an audiobook, going to the gym or giving someone close to me a thoughtful gift. Also, exercise reeaally helps! It’s great to have something to focus on where you can blow off a little steam!”
See the PigsnThings Instagram here.
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