Together we will find a cure Donate
Together we will find a cure Donate

In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Katie Smith

Special needs teacher Katie Smith, 31, was struck down with debilitating headaches just weeks after returning from her honeymoon. After numerous visits to the doctor and hospital appointments, her symptoms were finally diagnosed as a brain tumour and Katie was given the agonising prognosis that she may not live to see her 40th birthday. Together with her mum who is battling Non-Hodgkin lymphoma, Katie has written a bucket list and has been able to cross off “publish a book” after winning a children’s writing competition launched by ITV’s Lorraine Kelly. Together with husband Luke, she is facing a dilemma over whether to go ahead with their plans to start a family.

“I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say. I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.”

I met my husband-to-be through an online dating site. We married three years later and, as we both worked in education, we were able to take advantage of the long summer break with a six-week honeymoon.

It was bliss. We spent a week in Mexico, stayed with friends in Los Angeles and with relations in the Bay Area of San Francisco. We also went to Las Vegas and stayed in New York before flying home.

Our plan was to start a family and I came off the pill as we looked forward to what we hoped would be a long and exciting life together. Not long after we got back, I started to have dreadful headaches which became more frequent and increasingly debilitating as the weeks went by. I assumed they were migraines and attributed it to the change in my hormones and the stress of my new job as a teacher at a special needs school. 

To start with I self-medicated and then I saw the doctor a number of times. I tried ibuprofen, maximum strength migraine medication, co-codamol, naproxen and amitriptyline. Sometimes I thought they were working but then the headache would come back the next day.

It was really bad timing in terms of my job and I was so new in post as Head of English at Wyre Forest in Kidderminster I didn’t feel I could take time off so I continued going to work each day.

Even when I slept there was no relief. The pain was so bad it would wake me in the night and it got to the stage where I was frightened to go to bed. This had been going on for around eight weeks and things got so bad I was vomiting a lot. Up to this point I had seen several doctors and when I eventually saw my own GP it was finally acknowledged that my symptoms had to be addressed. Had I seen one doctor consistently then action might have been triggered earlier.

On one trip to A&E I was given diazepam and diclofenac and sent home. I’m blonde and quite slight and the way I was being treated made me think that people took one look at me and assumed I was frail and couldn’t cope with a migraine.

After yet another visit to the surgery I was referred for a scan and although it was requested as “urgent” I wasn’t too worried – a brain tumour was the last thing I thought it would be.

Ahead of the hospital appointment, I struggled through my friend’s wedding, making the cake and doing the best I could with my bridesmaid’s duties. The day after the scan I went out with friends. At 7pm that evening I had a call from my doctor who broke the news that they had found something and I needed to go to the urgent assessment unit at Queen Elizabeth Hospital in Birmingham straight away. I could hear the panic in my doctor’s voice. She had stayed behind at the surgery on her son’s first birthday trying to get hold of me – there had been no signal on my mobile for the whole day. I owe her my life. Of course I realised by then that things must be serious. To me, like anyone who hasn’t been diagnosed themselves or know someone who has, a brain tumour was synonymous with a death sentence. Despite this, I tried to stay positive. Maybe things wouldn’t be so bad. Maybe they would be able to sort it out quickly. Maybe I would be fine.

Once admitted to hospital there were more scans and I was on high doses of dexamethasone to reduce the swelling in my brain. After just two or three days I began to feel better and, finally, the headaches disappeared. 

Luke and I cried together and agreed we would take things a day at a time. Immediately before I went into surgery we sat and talked about the “what ifs”. It was pretty terrible. It was Catch 22: sign the consent form and I could die during the operation or be left with life-long impairment, don’t sign the form and the brain tumour would kill me. There was no real choice to make. Everything that had happened to me was a result of the growing pressure on my brain and I had reached the point where the pain was unbearable. I would rather have died than put up with those headaches for the rest of my life.

My operation lasted four hours and 90% of the tumour was removed. It had grown to around 6cm, the size of a satsuma. Post-surgery was surreal. I felt great and Luke took photos of me, thumbs up and smiling. I had a sense that the tumour had gone and I was going to be OK. I was relieved to get home just a few days later. I recovered well, oblivious to what lay ahead; it was a blissful ignorance. It was a relief to stop taking the steroids which had vile side effects, my face had really puffed up, I couldn’t sleep and I was horrible to Luke.

I saw my consultant again in December and he was sparing with the detail. I think he was being kind enough to try to allow us to have a good Christmas. Four weeks later and into the New Year we went back to be told that the tumour was a grade two oligoastrocytoma which could regrow and become malignant. By February the prognosis was clearer: there was a one in three chance the tumour would be back in five years and it would be a higher grade. My chances of living another nine years and making it to 40 were 50/50. Up to that point Luke had been quite positive but now the news was devastating and he broke down as we waited to collect medication from the hospital pharmacy. It was horrible and I can find no other words to describe how it felt to watch.

Since then, and as I await my next scan in July, I have been back and forth to the doctors to try to get my medication levels sorted and Luke and I are trying to make the incredibly hard decision whether or not to go ahead and try to have a baby.

I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say.

I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.

When I get back to work in a phased return I am hoping it will be a distraction from things and what has been a horrendous six months. During this time I have also been dealing with my mum’s diagnosis with Non-Hodgkin lymphoma and supporting her as she goes through treatment. I have spent a lot of time with her and together we have made a bucket list choosing things that we want to do and relying on my sister Abi to complete it if neither mum nor I are able to. Mum wants to go to Cephalonia (she loves the book and film of Captain Corelli’s Mandolin which is set there) and I would like to travel to Vietnam and the ancient temples of Angkor Wat in Cambodia. Mum also dreams of conducting an orchestra as they play Delius’ Sleigh Ride, one of her favourite pieces of music, and all three of us would like to have a book published.

Over the weeks we’ve spent quite a lot of time sitting around watching daytime TV together and when we saw Lorraine Kelly announce her Top Tales competition to find a new children’s author we all decided we would enter. I was the only one who actually did and when I was invited onto the show and it was announced live that I was the winner, it took my breath away and I cried a little bit. When I was off-camera the tears just wouldn’t stop, it felt great to have recognition from a respected book editor for my story which I completed in a couple of weeks and didn’t even think was that great. Now my book, The Pumpkin Project, will be published by Hachette Children’s Books this autumn. The main character is an extremely kind eight-year-old called Lottie who, together with her grandpa sets about growing a pumpkin for a school project. Lottie is based on my own niece who has recently become something of a minor celebrity at school!

It was wonderful to have achieved something like that at such an awful time. To be told that most of those on the judging panel didn’t know I had a brain tumour, to be reassured that I didn’t win because of a sympathy vote, and to be told that the public didn’t care about me and that it was all about the story was just what I wanted to hear.

Luke has this great metaphor to describe how things are. He says it’s as if we are in a desert where every little bit of happiness is like a glass of water that quickly evaporates before our eyes. While the book deal is fantastic it is tainted by the terrible thought that I will die a lot earlier than I thought I would. In some ways I would rather not know what lies ahead.

My goals at the moment are to see my book published and to be among the 20% of people who live for more than five years after a brain tumour diagnosis. It is such a dire situation to think that 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 has been allocated to this devastating disease. 

The public support for an online petition backed by Brain Tumour Research was incredible as were the Government promises to do more for people like me which followed. Unless there is some miracle breakthrough on the cards the situation for me remains dire. While I feel we are on an exponential curve with medicine I am realistic enough to know that discovering treatments for brain tumours is one of the slowest developing areas.

Katie Smith
March 2017
Katie Smith In Hope resized

Make a difference

We are striving to fund a network of seven dedicated research centres. Help us fund the fight. Together we will find a cure.

£5
£10
£25
£50
£100