My tumour is unusual in that it’s slow growing. I feel well in myself although at times I have complex partial seizures.
In 2005 I started feeling unwell. It started with a feeling of dragging in my left leg. The doctors thought it was lupus but the test came back negative. Despite this I was treated for lupus anyway.
In May 2006, I suddenly felt very unwell. I carried on as normal, ate some food but continued to feel really unusual. I found I couldn’t understand the television programme. The next thing I remember is waking up in casualty. I’d had a seizure, which the doctor put down the stress. I had been stressed as I was worried about feeling so unwell and problems in my personal life. I was told to rest so I took some time off work.
I saw a neurologist who put my seizures and feelings of being unwell down to stress. My husband told the doctor I seemed confused a lot of the time so the doctor sent me to have an MRI scan. It came back showing a shadow on the right side of my brain.
Three days later, for other reasons, my husband left. It took all I had to concentrate on keeping calm so I didn’t have another seizure.
I went to the Norfolk and Norwich Hospital with a friend. The doctor said it could be either an infection or a tumour. I didn’t know a lot about tumours but I was pretty certain it wouldn’t be and so were the doctors. It was and I was given 5-10 years.
In 2007 I had a biopsy. People didn’t seem to know what to call it, which confused me. I heard it called a lesion, a tumour and cancer.
I went to the Big C Centre before I had my biopsy and picked up some leaflets and booklets. I found out my tumour is called Olidigliomer and I found out that it affects the motor part of my brain.
After my biopsy I was told it definitely was cancer. It is also a non-removable cancerous tumour, as it’s so deep. It affects my motor area and pushes on my thought area. It causes numbness in my left side. The hardest thing though is that nothing can be done about it. Although I did have some radiotherapy but can’t have any more for another 20 years!
I got to know staff at the Big C Centre quite well. I had 6 weeks radiotherapy which happened Monday to Friday every day. I was so lucky to have got a hospital car (which I found about through the welfare rights service at the Big C Centre) as the doctor had suggested that I got the bus there and back every day.
I also used Look Good Feel Better at the Big C Centre. It was fantastic! The staff at the Centre became like family. I felt I could always go there. Especially if I wanted some quiet.
I used the welfare rights service most. I had sick pay from work when I was being treated with radiotherapy but my sick pay ended. I decided to leave work as it became too much. I found the idea of claiming benefits terrifying as I hate forms and find them really daunting and scary. I got to know Tina, the welfare rights advisor at the Centre. She helped me with income support, maintenance (from my ex-husband for my son) and more. She has been a God-send. If I get too stressed, that’s when I start to have the seizures so she’s helped in so many ways. I feel safer in the Big C Centre. It’s such a lovely place.
I also found out about the brain tumour support group through the Centre. It’s somewhere I feel I can just go. I felt I didn’t fit anywhere else, but going to the Big C Centre changed that and helped me learn more – about my cancer and about life skills, such as form filling. It’s great that I don’t have to go and sit in the CAB office in the city. They’re also there even when I don’t want to talk. Sometime I just go and sit in there and cry. I even got a big hamper last Christmas from the Centre! It was so nice that someone had thought of me.
It’s been hard not working but I have a network of friends who keep me busy. I also volunteer in the Big C shop on Magdalen Street, Norwich. I volunteer to give something back to Big C, as they’ve been such a help to me.
I also had 6 sessions of counselling at the Centre. It’s such a safe place. My son used the Centre too – he found it difficult, both with the divorce and my tumour. I was determined that he wouldn’t be my carer. He tries to be strong. It’s hard as we don’t know what’s around the corner but at the moment, we just get on with living life.