Guest post: 'It's unacceptable that so little money goes into brain tumour research'

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I'd heard of breast cancer, cervical cancer, skin cancer, but brain tumours? I didn't know they even existed. But now I know about them all too well.

The consultant discovered my first brain tumour when my baby daughter Daisy was six weeks old. He described it like an octopus wrapped around my brain. I was supposed to be enjoying my new baby, but I was faced with the diagnosis of a disease that meant I might never see her grow up, go to school or get married. It explained the fertility troubles I'd had too - it had taken me eight years to get pregnant, as the tumour had been pressing on my pituitary glands, which controlled my hormones.

My pregnancy gave the tumour - which had been growing in my brain for at least ten years - a growth spurt. The result was that during and after Daisy's birth, I was struck with much worse headaches (I had been struggling with them for years) and toothache - and my eyes hurt. For several weeks I went between doctor and dentist trying to get to the bottom of what was wrong. I thought I had suffered a stroke. I was diagnosed with Bell's Palsy but I couldn't see out of my left eye, which is not a usual symptom. This alerted the doctors, and finally I had a CT scan which revealed the first two tumours.

Six months of assessments followed and I was told to prepare myself for the worst. And I did. I wrote letters to Daisy and my partner Wayne telling them I loved them and asked Wayne to find Daisy a nice new Mummy if I didn't make it.

In March 2010 I had an operation to remove the tumour, or as much of it as possible. I woke up and I was so grateful to be alive, but the sight in my left eye had gone forever and I couldn't talk or walk. Wayne had to care for me entirely. At one point a stair lift was suggested - "no way!", I thought; I was determined to learn to walk again, and how could I if I had the temptation of a lift? Eventually I learned to crawl up the stairs and then walk. Later, my speech and eyesight returned, but then the tumour started to grow towards my right eye. I had radiotherapy for six weeks, and half of my hair fell out. Daisy was still not a year old.

The relentlessness of that year and everything that happened almost defeated me. I was exhausted and very down. But despite everything, I felt I had so much to live for. I was a survivor of a brain tumour - a disease which is the biggest cancer killer of children and the under forties - and my baby girl, much longed for, meant everything to me. Wayne and I got married in 2011, of course because we were in love, but also because we wanted to celebrate everything we'd been through.

And now? Just last month my consultant told me I have a third tumour and one of them is still growing, even though he believes that all my tumours are stable at the moment. At some point I must have more surgery, this time through my face, which will leave me badly scarred, even disfigured. It won't be an operation I will rush into, but it may save my life.

Notwithstanding all this, my attitude to life remains unwaveringly positive. I am more relaxed than I was before, and more fun. If we've no food in the cupboard, we go out for dinner. If the sun is shining, I'll sit in the garden with a glass of Prosecco. Daisy and I have a brilliant relationship; we love nothing more than going to a café and people watching together. We enjoy looking at people and deciding whose shoes and bags we like. We enjoy simple things and each other. But I am full of fear, too; the thought that one day I might not be there to pick Daisy up from school breaks my heart.

Daisy is starting to piece the story together that Mummy isn't well. I am dreading the 'big' question and the conversation about heaven or about how even the best doctors can't always fix everyone. I will tell her the truth, because I've taught her that lying is naughty.

Of course I get angry; when I look at her in her lovely, five-year-old world, I am in no hurry to tell her, and have this horrible, unfair thing overshadow her happiness. Why her? Why us? But it isn't 'woe is me' anger - it's fury that so little is known about this disease, which is becoming more common. Brain tumours kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research is allocated to this devastating disease. This is unacceptable.

I ask myself why this is, and sadly, I think it's because there are not thousands of brain tumour survivors taking on the cause, waving placards, getting cross, wearing campaigning t-shirts, taking government and the big cancer charities to task to get the message out there - because they're dead. But I have survived for five years, and I am here, fighting to raise awareness - angry - but still smiling.

Mel supports Brain Tumour Research and will be taking part in Wear A Hat Day on March 27th 2015. Join Mel and support Brain Tumour Research by taking part in Wear A Hat Day on March 27th.

This really touches me, my beloved grandpa died of a brain tumour after a long time of being misdiagnosed and many pairs of glasses. It wasn't his sight that was the issue but that he'd 'forgotten' how to read. Keep up the good work and hope for many happy, healthy years ahead.

Hi Mel, as you know I've been in touch with you on Facebook and your an inspiration. Your doing a great job raising awareness but your right more needs to be done x

My mum had episodes of absence periodically for over a year then began having seizures. She lived for 18 months after the first seizure and I can't stop thinking about how different our lives could have been with earlier diagnosis. It's been nearly two years since she died and I still cry nearly every day.

My lovely sister in law died of a brain tumour leaving her two sons and husband - and my husband who adored his big sister. She was also misdiagnosed many times (both her parents had also recently died so for ages docs thought she was depressed. Then nerve danger, MS - lots of other things. Also though she had probably had the tumour for a few years. She only survived for just over a year and we have done a lot of sponsored walks etc to raise money for researching this totally devastating, very underfunded cancer. I applaud you and your inspiring attitude - although have so much sympathy for the fears you have as the mother of a young child. By the way, our two nephews are the most wonderful, kind, thoughtful boys. The oldest has just started uni and it's a joy to see this shy, serious-minded young man really begin have fun. I think the boys are such lovely young men because, although they lost their mum too soon, she was a fantastic mum while they had her. Honest, loving, gentle and full of smiles even in dark days. They take her on with them, with pride and strong hearts. I wish you the very best of luck in your ongoing trials with this shitty illness. And positively - I also have a friend who survived for over 20 years with a brain tumour - and the more people like you are fighting for better clinical care and research, the more people like you will be here years from now...advances are possible and sometimes swift - and there are many of us fighting for them. Keep on keeping on.

Fantastic post My dh is a brain tumour survivor, 10 years post op for which we are always grateful. I try to support brain tumour charities whenever I can but you're right, they suffer from very poor awareness among the general public. Well done to MN for highlighting this issue.

it is unacceptable. death rates have hardly changed at all