Kirsty’s story – I don’t do life by the half measure

Monday 01 February 2021

Maggie's Edinburgh

Kirsty was first diagnosed aged 11, and has been living with cancer ever since. Now 30, and engaged, she looks back on her life so far, the lessons she’s learned, and shares a funny story along the way.

I was first diagnosed with cancer when I was 11 – I had a brain tumour and an abnormal build up fluid in the brain. I was still at primary school.   

I don’t really remember being at school after that – I was in and out of treatment. Nobody wants to grow up quickly, and I missed out on all my teenage years. School friends fell out of touch; a lot of people just didn’t understand my condition.  

But I just got on with it: I made friends with other children who were also going through treatment. 

My mum and dad were always there with me. And I’ve built other relationships. 

Like Ross: he’s been one of my best friends for 14 years. We met on the wards. And Jessica: oh God, she’s been there for me. And David: who’s now my fiancé. There’s a good story to tell about him.   

New-found difficulty 

I’m 30 now. Two years ago I had a really bad episode. It was all very unexpected.  We were about two weeks away from going on holiday together to Gibraltar.  

I started feeling really bad at work. One of the long-term effects of my condition is intense headaches – sometimes they go on for days at a time – and this was a really bad one that came out of the blue. I went home, but started to feel worse.  

I told David to take me to hospital because I thought I was going to die. Ever since I was 11, my tumour has never fully gone away – it’s inoperable and incurable – so it’s always been really important I respond to any symptoms quickly.    

Within 20 minutes of arriving at the hospital I had a CT scan. Then I was taken to the treatment room. There were far more people with the surgeon than normal, so I knew it was not going to be good news. The surgeon said they needed to operate before midnight in order to save my life. I couldn’t take it in.   

Nothing was really sinking in. My parents came over to the hospital in a flash, and I was rushed into the surgery that same afternoon.   

Starting my recovery 

The surgery went well, I made a good start to the recovery, and I was kept in the hospital for the next couple of weeks. 

But that whole time everyone in the hospital knew something I didn’t. The nurses, the surgeon, the whole ward – everyone knew except me that David was planning on proposing on our upcoming holiday.   

After 20 days, I was feeling better, and the medical team said it would do me good to go abroad. David proposed one morning at the Rock of Gibraltar. I was scared initially – I thought we were going to be told off for going beyond the cordon. And who flew out secretly to surprise me that same evening? My best friend Jessica.   

Jessica lives in London and always finds a way to surprise me – she’s surprised me at home, when I’m on the ward, even when I was getting engaged in Gibraltar. She snuck up behind me in town later the same evening, and said ‘Congratulations’. I screamed my head off.   

Managing my life and illness  

I’m still living with it. Since I was a little girl, I’ve known it’s there, I’ve known what it’s doing, and I know what every single headache means.

Although the tumour is inoperable and incurable, I can manage living alongside it. I’ve had quite a few shunts, which often need changing and reorganising. I just need to respond to the symptoms and work with my surgeon and the medical team.     

Sometimes bad headaches can keep me in bed for a week. I’ll feel the pressure in my head and think ‘not again’. Memory loss is another thing to cope with, forgetting where things are – keys, phone, glasses, anything, everything. Sometimes I’ll be thinking I just held something, and it haven’t had it since last year.     

My secret? Och, I don’t know – I just get on with it, I wing it. There’s so many birthdays I’ve missed because I’ve been in hospital. I’ve missed weddings, parties, anniversaries, everything. But I don’t remember what I missed - so it doesn’t bother me.

What happens, happens. It’s not worth worrying about. I always find a way to celebrate what I’ve missed and make it special.     

How are you going to get on with your life otherwise? It’s annoying when people say ‘I don’t know how you cope’. Because the only answer is ‘Neither did I but I didn’t have a choice’. You just have to. That’s that.

When you get told something, yes you might get upset - but your body changes and you’ve got to change too. It’s crazy how much your life can change – but I genuinely think it makes you a better person.   

Maggie's and me

I just love Maggie’s. I was in hospital for six months a few years ago, including Christmas.

I was in Maggie’s all the time, whenever I could: the nurses would drop me off, or Andy would come up and take me down.   I’ve done so much fundraising for Maggie’s as well to say thank you.  

Andy is a hero. He’s a lovely, lovely man. He brings you right back down. You just need to talk to him and you feel calm again. He always has the right thing to say, no matter the situation, and always gives the answer or sends you in the right direction.   

The centre is a place to relax, it’s comfortable, just like home. 

And it’s special – not just for me, but for my parents and for David now too. Our support group is like our Maggie’s family, everyone understands each other and we can take the mick.

I don’t think I could live without Maggie’s. Not now – not ever. 

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If you, your family or friends need support during this time, please call us on 0300 123 180, email or book a time to visit us and if you're already visiting the hospital, just come in.

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