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Brain tumours are hard to treat and survival remains stubbornly low. That’s why brain tumour research is one of our top priorities. In this series, 3 people share their experience of the disease, starting with Mary and her diagnosis.

The headaches began about 6 months before I was diagnosed, when I was 30. They were really bad in the morning and I felt like I had pressure in my head. Any kind of strain like laughing, sneezing or crying made the pressure feel worse.

I went to the doctor a couple of times, and she thought it could be neck tension headaches. I’d started a new job and was getting stressed so I thought that could be the case. She prescribed me painkillers and I tried meditation to help stop the tension, but the headaches didn’t go away. Nothing helped. At times it was just unbearable; I’d be sitting with my hands over my head because the pressure felt so bad.

One morning I woke up and the headache was worse than it had ever been. I had double vision for a couple of minutes and thought that something wasn’t right. I called my sister and told her, and she told me I had to go to A&E. I said that I would be fine, but she pushed me to go. I’m so glad she did, or it could have been a different story.

Everything happened so fast

After I was seen at A&E, the doctor thought it was likely a migraine. I just wanted something to stop the pain in my head. I don’t know what happened, but another doctor explained that they were going to send me for a CT scan.

I had the scan on the same day, and after I came out they told me that I had a mass in my brain. I couldn’t believe it. I didn’t know what they meant by a mass, but they told me there was something in my brain that shouldn’t be there. Then everything happened so fast.

I was so shocked. I never thought in a million years that it was a brain tumour.

I was transferred to a different hospital, Charing Cross, where they did an MRI scan the next day. That’s when I was diagnosed with a brain tumour. I was so shocked. I don’t know what I thought, but I never thought in a million years that it was a brain tumour.

The surgeon came and spoke to me and said that they were going to operate. He explained that the surgery would be very high risk because of where the tumour was located. It was near the cerebellum on the left side of my brain, at the back of my head. He said that there was a risk I wouldn’t wake up from the surgery, or that I could be paralysed. But if they didn’t operate, the tumour would grow bigger and block the fluid going into my spine.

There was so much to take in.

Preparing for the worst

I was in hospital for a few days before I could go home for the weekend. I had a lumbar puncture, where they take a sample from your spine, and so many blood tests. For one test, they had to check how my kidneys were working. I needed to start at 8 o’clock in the morning, and have blood taken every 4 hours. That was a very long day.

I had my surgery on July 11th 2016. The surgeon said that they couldn’t remove all of it because of its position in my brain, and that they had sent off a sample to be analysed. That would tell if the tumour was benign or cancerous.

I stayed in hospital to recover and had to wait for my results. That week was awful. I couldn’t sleep and I couldn’t really eat. I mentally prepared myself for the fact that it could be cancer. So, when I was called in for my appointment, and my doctor told me it was, I didn’t cry. I just said: “OK, what can we do?”

He told me that I had a very rare type of tumour called a medulloblastoma, which commonly affects children. I wondered whether the fact that it was so rare meant that they wouldn’t be able to do anything. But he said the 2 or 3 adults with this tumour he’d seen in his lifetime were alive and in remission.

Understanding what lies ahead

My doctor explained that I’d be treated the same way as a child would, with chemotherapy and radiotherapy to treat the remainder of the tumour. I was given lots of books to read about the treatments and the side effects, but I wanted to know more. So, I went on Google straight away but I couldn’t find much information about adults with medulloblastoma; most of the information was about children.

Mary having treatment

When I was having the chemotherapy and radiotherapy, most of the other people around me having treatment were also much older. I felt alone. So, I joined different forums online to find people who were like me, the same age and with the same type of tumour. And I was doing research all the time, using websites like Cancer Research UK’s to find out anything and everything I could.

I just got through it each day, but going online really did help me understand what’s ahead.

I finished my treatment in April 2017 and my scans have been clear. I don’t say that I’m in remission, I’m just glad that the tumour is still gone and hasn’t returned.

What I’ve learnt is that it’s so good to talk to others. There are people out there going through the same thing, and they’ll be able to understand what you’re going through. There’s always someone to talk to if you need to.

If you’ve been affected by cancer and would like to speak to someone, you can call our nurses on freephone 0808 800 4040, 9am until 5pm Monday to Friday. Alternatively, you can join our friendly and supportive discussion forum, Cancer Chat.

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Ruth July 30, 2018

Talking to other people, especially if they are in a position to understand must be positive.