My name is Leana and I’m 23 years old. I was diagnosed with a brain tumour in the Autumn of 2013, nine days before my 18th birthday.
I had just been given the main role in my Sixth Form Musical and after working so hard in school, it was finally my turn to be the star, and I was ready to begin my life.
All of a sudden that wasn’t going to happen, and I needed an operation to remove the brain tumour instead. I was told that I wasn’t going to die and that I’d be back at school in six weeks.
Two weeks later I had brain surgery at the National Hospital for Neurology and Neurosurgery, in London. Afterwards, I felt dizzy and sick and I was hypersensitive to everything, but that, I was told, would go.
I was on an adult ward with women who had children and grandchildren my age. I felt so out of place; this wasn’t my life. I felt alone and I felt cheated.
The surgery was thought to be 95-100% effective and the tumour wasn’t expected to grow again. Whilst recovery was hard, after some months I returned to Sixth Form to do my A levels. I had to drop 1 then 2, then eventually all three of my A levels.
About a year after my operation, my dizziness, vomiting and nausea were increasing again, and in February 2015, I was told that the tumour was back and it had spread to several places in my spine.
I had 6 weeks of Radiotherapy. I lost all my energy, my hair, and I lost all ablity to keep down food and water. My weight plummeted. The next scan showed that the radiotherapy hadn’t worked, and in fact, the tumour had grown.
I started chemotherapy. The hospital doctors sent me to a hospice because they hoped the hospice doctors would be able to find a treatment for my ongoing nausea. They decided to put me on a very high dose of steroids, which overnight helped with the headaches, the vomiting and inability to eat and drink but the side-effects meant that I more than doubled in weight. At my biggest I was 108kg and the long period of high dose steroids had caused Avascular Necrosis – a side effect that kills the bones in your joints, making them crumble. I have it in both knees, both my hips, and both my shoulders.
During next few months I started getting really bad headaches. A scan showed swelling in my brain; so I had an operation to put a shunt - a drainage system, put in. It was then that the doctor told me the treatment couldn’t be curative and I would probably be dead by the New Year 2016.
When I was still alive some months later, I was told that I should leave the hospice. I had been in the hospice for 11 months in total. Because of muscle weakness and the side effects of the steroids, I was now in a wheelchair. I was very lucky to be found an accessible flat by my local council.
Since then, I’ve had 2 years of Chemotherapy and a hip replacement in June last year to help with the pain I get from the Avascular Nercrosis. The tumours were stable for a while.
However, recently the tumour in my brain has started growing again and I am still receiving treatment to try and stabilize it. I have not been able to continue my studies, or go onto Uni as I had planned, or start working.
I am so lucky to have my amazing mum and friends and I will always be grateful to them, but they can’t know the pain and sadness of watching your peers move forward and grow into young adults around you, whilst having the future you always thought you’d have being taken away.
My mother and I went to our first Teens Unite event, a Mother’s Day Tea, and we were introduced to other ‘Teens’ and their parents. I didn’t feel so alone anymore.
Talking to other ‘teens’ who have experienced the all the emotions and issues that young people with cancer face, on top of the struggles of simply having cancer, is invaluable.
Teens Unite has given all us ‘teens’ a place where we can still be young people, and where cancer is not what makes us different from every other young person, but what makes us the same.
I’ve had three operations - including a hip replacement, radiotherapy, and years of chemotherapy; Teens Unite have been there through almost all of my journey with cancer. I am just one of the many young people that Teens Unite supports.
With Teens Unite we are able to have fun in a non-medical environment, and during the activities, outings and get-togethers, we can enjoy being young people, as we are supposed to, knowing that we and our families are surrounded by other families in similar situations. Ultimately, we are part of the family of Teens Unite.
