Updated: Sep 29
This is tough to write. And I write about my life all the time, I’m a writer by trade, so the words are meant to come easily. They don’t.
What does come thick and fast are the emotions, big and messy with memories I try not and remember, clogged up with unresolved feelings of guilt and a lasting anxiety.
I’m hoping this will be cathartic as if somehow this will make things a little better in my mind. A little easier to digest if I see it written down in black and white. I hope. I hope some more.
But I’m resistant to feeling better about this too, I sort of feel like I don’t deserve it.
When I first met Sarah, we were both 15 and both terrified. I’d just been told I had an enormous tumour in my leg by a doctor who said he didn’t know if it could be cured and a sobbing nurse who was meant to be comforting me. My parents were shell-shocked, and I didn’t really understand what was happening.
I had to go for legions of tests at a children’s hospital, we were met on the steps by the consultant. I remember the look my parents gave each other at this moment, the other kids in the waiting room didn’t have any hair. This wasn’t looking good. Still I didn’t really understand.
This is turning out to be about two girls and not just Sarah. I must remember that I want to do her memory justice, but I hope talking about me too provides some context. I don’t want to hijack this story even though it’s my experience. I’m conflicted.
I’m transferred to a specialised hospital. It’s away from my hometown, but luckily not too far away, so my parents can visit. I’m pleased about this because I’ve started to wonder about my chances. I write that last sentence as if it’s just one of those things. I can’t tell you how loaded those words are and I have to take a deep breath. At the time, as a fifteen-year-old I dealt with it better than I deal with the memory now – isn’t that funny?
New admissions to Ward 11 are often put into side wards with just two beds. I’m waiting for my full diagnosis, so I expect they want to try and manage that initial ‘what the fcukness.’ On my first night there is a lovely girl who is in the same position as me, we chat a little, but I can’t remember her name or where she went to after that first night. The person I remember is the second of my roomies – Sarah.
Sarah made me laugh, Sarah looked a little bit like me, Sarah was the same age as me, I liked Sarah enormously and she liked me.
She was an old hand, having already spent a few months in Ward 11 land, and she showed me the ropes, she was with me at night time when everyone else had gone away. When I couldn’t sleep and was scared, she was there. We chatted a lot. And it wasn’t all doom and gloom, we laughed about boys and clothes and hair (hair was a big thing!) and our short lives to date. We were still teenage girls, that hadn’t left us.
After my biopsy, I was sent home to await the dreaded news. They suggested we take a day’s holiday somewhere, do something nice together as a family. We knew this didn’t bode well. We left the hospital and I left my roomie.
The results were meant to be in a week later, but in just a few days we had a phone call. I can remember seeing my Dad take the call, scanning his face for news. He smiled, he actually smiled and said thank you a lot into the phone, I didn’t understand.
My tumour was incredibly rare, literally one in a million. It was unexpected news; they hadn’t seen it before in a teenage girl. It was written about in the Lancet. Fancy, but why am I telling you this? This rarity was my lifeline. It saved my life. I became lucky. It was such a big tumour my odds were slim if it had been your bog-standard cancer. It hadn’t spread to my lungs which was common. I dodged more than one bullet.
This was my first foray into ‘grey areas.’ Not all illness are identical, there are variations and mutations and weirdness and lucky breaks and ups and downs and in-betweens. It was strange to navigate. Everyone was delighted, but I knew I still had to go back and have lots of operations and treatment. I was in a lot of pain and yet I knew I was meant to feel lucky, but I didn’t really. Weird.
I saw Sarah again and this was my first moment of guilt. I wasn’t going to need as much treatment as her. I most likely would survive this shit storm. It didn’t seem fair to me and I felt bad. Two girls, two tumours, two different results, what made me so special?
Then the first big surgery came and five hours later I was really very poorly. It was a lot for my little body. I’d lost a lot of weight with the tumour and for someone already quite small it made me a bit weedy in the big operation gamble. Sarah was there. Sarah made me feel better. She’d ring the nurse for me in the middle of the night, we’d reach out sometimes and hold each other’s hands. We saw it all, we saw all the indignities, the bedpans, the vomiting, the pain, the tears. It was autumn, they’d sit us outside occasionally and we watched the colours change. I felt there was hope. I wonder if this is why it is my favourite time of year.
After about six weeks, I was well enough to go home for a while and recover. I would have physio’s and teachers visit me, there would be no school for months (too much of a liability) and mum and dad turned the dining room into a downstairs bedroom for me. There was a physical recovery to be made, and I wrote it all down as a way of helping my mind. Those diaries are painful to look back on. I was dealing with a lot of loss. I’d run and done long-jump for my county; I was quite sporty and loved to dance. Those days were gone. They’d saved me and my leg, but it was never going to be quite the same again. I couldn’t do some of my subjects like theatre studies, because I couldn’t move about enough. That one hurt, I’d enjoyed that one especially. But I knew I was lucky and by this point I really felt incredibly grateful (and still do, more with each year of life), but still guilty.
It took quite a little thing to take me back into Ward 11. I’d become too speedy on my crutches; the wheelchair was long gone, and I was so confident that I’d forgotten to sit down going down the stairs. I misplaced a crutch and fell all the way down. The GP was called, he was worried, but again I thought I’d escaped scot free. This lucky business was catching, I still didn’t understand why I was getting this luck.
A few days later, I was navigating my little brother’s wooden train track and I took a step at a bit of an angle and collapsed, the pain incredible. It reminded me of the shooting pains that used to make me sick before I was diagnosed. I was back in Ward 11 double quick with fractures within fractures and needed more big surgery.
I was on the main ward this time and it had been a few months since I’d seen Sarah, but she was there in the bed next to me and that made us both smile. But it was different, she was noticeably very, very ill. I wasn’t and I felt the sea-change. It made my head swim, it made me frightened and sad and I couldn’t tell her. I decided to be positive with her at all times. We knew what was going on.
This operation was worse than the last and I spent some time in the intensive care unit. I’d lost too much blood and there were some complications, I went into shock. There was panic around me and strange noises and a drifting in and out of consciousness. To this day I can’t watch hospital dramas, it makes me remember the pressing down of the oxygen mask, which I wanted to rip away.
Back on the ward a week or so later and I had some problems with my blood, I had strange chest cramps, that led to more dramas. Everyone worried. Sarah was there, Sarah began to press the buttons for help for me again, she chatted to me in the night. There was a boy this time too, we fancied each other. Me and Sarah giggled about it. He dedicated songs to me on the hospital radio. Sarah and I momentarily became carefree teenagers again. We snatched our moments in-between a whole lot of crap. We were just girls.
It took two or three months before I was let home, Sarah declining all this time, me getting a bit better each week. Somewhere during this period, we switched roles and I was the one ringing for help for Sarah, I tried to offer words of comfort, I tried to be a friend. I think I was out of my depth; I hadn’t experienced this before.
I had to have a mini operation towards the end of this period and, after the last op I was scared and showed it! The day I was wheeled into surgery, Sarah was being wheeled to a new bed, opposite me and I didn’t like that change, I wouldn’t be able to help her in the night as easily. They pushed our beds together as we passed and she whispered (that’s all she could do by this stage) ‘quality is better than quantity, don’t forget it’ and ‘I hope it will be all right.’
These words stick in my throat and I’m sobbing writing them as they were the last thing I heard her say to me. Even as I was wheeled away it made me cry as I couldn’t believe the compassion, wisdom and care, even when she was so very very sick.
As I was coming around in my bed on the ward I heard whispering and it was some of the families talking about Sarah, I tried desperately to open up my eyes and show my parents that I was awake as I didn’t want to hear the rest of the conversation. They were talking about her dying and I couldn’t bear to hear it. I managed it and the conversation changed which let me go back to sleep.
That night Sarah was screaming in pain. We had an amazing nurse who was friends with us both. She told me that Sarah would be going home tomorrow to spend time with her family and pets. We were both big animal lovers, so on one hand I thought this is nice, but I also knew what that ‘going home’ meant.
The next day when I woke up, she was gone. She was gone!!! The tears wouldn’t come.
That night me and Richard, my hospital boyfriend, sat holding hands on my bed and the balloon Sarah had tied to her bed, was floating over the ward. We watched it bob around for ages and ages. This small act has really stuck with me!
Later we were told that Sarah had died with her pets around her, there was concern for me, which I felt was all wrong. This shouldn’t be about me, which is a little bit how I feel about writing this.
It was as I was going home and someone said, see you again soon, that the tears came and wouldn’t stop all the way home. ‘I’m going to go back, and Sarah isn’t.’
A few days later and I went outside into my garden in the darkness at night and I lobbed my crutches far into the inky black (which wasn’t really that far, I was still a bit of a weakling!) and screamed and screamed and screamed.
I screamed for the unfairness of it all, I screamed for my friend, I screamed for all of my friends still on that ward. I screamed for me, but I didn’t know it.
It still doesn’t seem fair. I struggled a bit with this in my twenties, I felt that as I’d survived this, maybe it was for a reason, but that reason wasn’t presenting itself to me very easily! I thought that I should really achieve something to make my survival a little bit all right whilst at the same time telling myself that she would have made a better stab at this thing called life than perhaps I ever could. I gave myself a bit of a rough ride at times.
I’ve had to deal with a few things that being poorly meant, some of them physical, but some of them emotional. This one I don’t think I’ve ever really cracked, all this time later. The thing that has changed lately is that I’ve learnt to become a better friend to myself. I can’t change what happened, but I can give myself a little hug every now and again and accept that it’s OK to be just me. That’s enough. Sometimes stuff happens which isn’t in your control. And I’m pretty sure Sarah would agree because Sarah was ace.