It’s hard to remember the months after my sister, Victoria, died. She was only 25, she’d been taken far too soon and I just couldn’t believe that she was gone.
Victoria (who I always called Tora) was only three years old when she was found to have a malignant brain tumour. I was five years younger than her, so her battle with cancer started before my time.
A couple of years later, she was diagnosed with Gorlins Syndrome; a rare condition that means every cell in your body has a much higher chance of becoming cancerous than the average person. Tora fought cancer for over 20 years and she had hundreds of operations during her life so the hospital was our second home.
It was the beginning of the end when another brain tumour was discovered, followed by a spinal tumour. She went through gruelling chemo to try and shrink the cancer but it wasn’t working, so the doctors decided that removing her sacrum (the bone connecting spine & legs) would be her best chance.
We were all terrified for the operation. Even though my parents and I were used to seeing her disappearing into an operating theatre, this time it was different. She seemed so weak from the chemo that I’d convinced myself she wasn’t going to pull through, so saying goodbye to her before the operation was heartbreaking.
The surgery was spread over a couple of days due to complications and she spent a long time in Intensive Care. The operation had meant that she now had a colostomy bag and very limited use of her legs, but she was determined to learn to walk again and never gave up.
Unfortunately, they hadn’t got all of the cancer, and what was left was spreading. After all of her determination and courage, it seemed so unfair that the cancer was winning.
Only two days before her 25th birthday, a doctor sat us down and told us that she wasn’t going to get better, that she had only months to live. It was completely devastating, it didn’t seem possible, and I couldn’t imagine my world without her.
Tora managed to stay positive throughout but she wouldn’t talk to me or my parents about dying; she’d change the subject whenever it was brought up. That’s why I’m so thankful that she had Kate, her CLIC Sargent social worker, to confide in and talk through all her worries with. Kate’s support and friendship gave her peace of mind and helped her come to terms with was happening.
Late one night we got an emergency call from the ward saying that we needed to be there as soon as possible. She was struggling to breathe so was put into an induced coma; it was the last time that I saw her conscious.
CLIC Sargent had provided her with a private room for the last few months of her life, which meant that we weren’t limited to normal visiting hours and it gave us the privacy that we needed. We kept a 24/7 vigil between us, it was important that she had someone there to hold her hand, that she wouldn’t be alone.
Every day her breathing became shallower. It was the weirdest conflict of emotions I’ve ever felt; half of me wanted her to stop breathing so she wouldn’t feel any more pain, but the other half desperately wanted her to keep breathing because I couldn’t bear to lose her.
After 7 days at her bedside, I lost my brilliant, kind-hearted sister. I was completely devastated and went into a state of shock for months; I just didn’t know how to carry on.
Kate encouraged me go to a CLIC Sargent siblings’ support group, to meet others who’d lost their brother or sister. Talking to people who were at different stages of grief gave me a lot of hope for the future. The group contributed towards a booklet for grieving siblings; discussing how we felt, how we coped and what we’d experienced. I’m very proud that this has now been published nationally in hospitals.
Talking about my experiences and emotions helped me start to come to terms with what had happened. I don’t believe the cliché “time heals all wounds”. When you lose someone that you love it’s like a black hole has ripped your life apart, you feel like there’s nothing left, only darkness. The wound doesn’t simply heal with time; it’s just that you start to slowly build up your life again around that grief, and eventually it takes up less of your energy. You learn to deal with it better, but it never disappears completely.
CLIC Sargent is trying to raise awareness of the emotional impact on the family, for Childhood Cancer Awareness Month and it’s a topic very close to my heart.
The charity has made a huge difference for us, but it’s important to remember their wonderful staff are funded purely by donations, as well as support from companies like Morrisons, J D Wetherspoon and players of People’s Postcode Lottery. That support is so vital to help families battling cancer; I honestly don’t know what we would’ve done without it.
It’s now nearly six years since we lost her, and I still miss Tora every day, but I can look back on my memories of her with a smile on my face. She was the bravest person I have ever known, she will never be forgotten and I am so lucky to call her my sister.
