Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
“It’s been a really tough time, but I have met some wonderful people through having my tumour and I am very lucky. I am alive, aren’t I? I look at my daughter every day and I just feel so lucky to have her. Having a brain tumour makes you open your eyes more and appreciate life. You have to go through the bad stuff to appreciate the good.”
I had always suffered with headaches for as long as I can remember, but it was probably about eight years. I did seek help, but the doctors weren’t interested. The headaches didn’t stop me working, but in the end I was becoming so exhausted and was really struggling, so my husband persuaded me to go back to the GP, who was still not concerned.
Then I fell pregnant naturally (whilst in Malaysia for Christmas) which was amazing, considering that we had already gone through four lots of IVF trying to conceive. All the way through my pregnancy, the headaches were really extreme, but my midwife reassured me it was just the hormones.
I was booked in for a caesarean because I had a low-lying placenta, but in the event I was admitted into the maternity ward two weeks before the planned date. It was at this time that I remember suffering with toothache, then eye ache or a headache, but not continuously or altogether. My husband, Wayne, noticed that one side of my head looked swollen.
After my caesarean, I really started to feel very ill with a terrible headache and pain in my eye. A few days later I went to the GP because by then the pain in my eyes and eyeballs was excruciating. I was told to see an optician and was also given the same pain relief tablets as I had been given in hospital.
A couple of days later I went back again to the doctor because I was only talking out of one side of my face. He asked me whether I thought I had suffered a stroke and told me that he thought it was Bell’s palsy. The hospital confirmed this diagnosis and gave me steroids. For 10 days I felt so much better, but as soon as I came off the medication the headaches returned with a vengeance.
Then I had bad toothache, so went to see the dentist.
Finally, I saw a consultant who, concerned that my eye sight hadn’t come back properly following treatment for Bell’s palsy, referred me to an eye clinic. When I finally had a scan, it revealed quite a large tumour, as well as a smaller one. It was such a shock – I had gone in for the appointment, laughing and saying: “I can’t stay long – I am in the middle of clothes shopping!”
It turned out that I had a grade I meningioma which stretched from my eye down my neck and I had probably had it for at least 10 years. It explained why I had had difficulties getting pregnant because the tumour was pushed up against my pituitary gland. I was told I wouldn’t be able to have any more children because the tumour would grow again.
My baby, Daisy, was just six months old when I had my operation in March 2010. My health visitor had to push for me to have my surgery as I was not at all well and losing sight.
I was in surgery from 8am until 7pm. Everything went wrong and there was a lot of bleeding. Afterwards, I realised that I couldn’t see at all out of my left eye. The doctors can’t understand why, but I don’t blame them. I lost my sight in one eye, but that’s better than losing my life. It’s a small price to pay.
After surgery I had to learn to walk and talk again. My husband had to dress me and feed me.
I then underwent tomotherapy – a new kind of radiotherapy – every day for six weeks. I was one of the first to use the new machine. The consultant oncologist explained that the tumour was heading over to the other side of my face and he was concerned that I might lose the sight in the other eye. He told me that the tumour was like an octopus, wrapping around everything and that this new form of radiotherapy was more accurate.
The radiotherapy really knocked me out and I just had to sleep. We went to live with my husband’s Dad and new partner for three months (he had lost his mum to cancer) because Wayne had to go back to work, we had a young baby and I was pretty helpless. Daisy went to a child-minder while I continued to feel really sick and lost some of my hair. I found this very tough – a woman’s hair is so important.
By September, I was so desperate. I thought: “I can’t do this anymore – I would rather be dead.” It was so out of character for me, because I am a very independent, confident and outgoing person. My GP gave me medication which I am still on. I tried to come off the tablets but I still have days when I can’t go out of the house, but mostly I am back to my normal crazy self.
My husband has been my rock – we only got married a year ago. I knew when he fed, washed and dressed me that I had a good one!
It’s been a really tough time, but I have met some wonderful people through having my tumour and I am very lucky. I am alive, aren’t I? I look at my daughter every day and I just feel so lucky to have her.
Having a brain tumour makes you open your eyes more and appreciate life. You have to go through the bad stuff to appreciate the good. Now I make my neighbour’s tea for him every day. He lost his wife to cancer.
Incredibly, my stepmother has just found out that she has a brain tumour…
Now I feel it’s my turn to give and have set up an umbrella group called MINE, which stands for Money Is Needed Everyday, to raise funds for Brain Tumour Research. I have started to make pictures and jewellery and hope people will see them and say: “That’s mine – I have to have that!”