In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Katie’s diagnosis with a low-grade glioma had a huge impact on her emotional health. Located on her brainstem, the tumour is inoperable and incurable, and she lives with the knowledge that it could become aggressive and impact her daily functioning. Faced with such devastating news, Katie, 50, and her partner Kate decided to arrange a date for their dream wedding, having been together for more than four years. The couple will hold a raffle in aid of Brain Tumour Research on their big day – a charity which funds a research centre in Katie’s hometown of Plymouth.
Katie tells her story…
My outlook on life has changed dramatically since my brain tumour diagnosis; I’m reminded of the thin line between life and death and I don’t take anything for granted. Faced with the sudden awareness of my own mortality, I’m determined to make the most of every day with my son and partner Kate.
“Having been engaged for a year, Kate and I finally decided to arrange a date for our wedding, in May 2020. We’re so excited for the big day and it’s given us something positive to focus on during the hardest of times. We’ve been together four years, having met through mutual friends, and we can’t wait for our next chapter.”
My symptoms started as an innocuous, itchy inner ear. My GP in Plymouth, thought that it could be caused by a neurological problem and referred me for further tests. I’m so grateful he took me seriously.
“Over the course of a year, I had lots of assessments, including scans, a lumbar puncture and a spectroscopy MRI – which reveals metabolic differences in tumour tissue – before an appointment to discuss the results in November 2019.”
I attended the appointment at Derriford Hospital with my twin sister, where the consultant slowly described my scans. It was like waiting for the punch line of a bad joke; the build-up without the light relief at the end. He told me that I most likely had a low-grade glioma on my medulla, a part of the brainstem notoriously hard to operate on. It was incurable and, because of its location, I couldn’t have a biopsy.
My world fell apart as he told me that the tumour was in the part of my brain that controls my breathing, heart rate and swallowing. Half-jokingly, I asked whether I should have prepared my will and quick as a flash I got my answer: yes.
“I was given a prognosis of 10 to 15 years, should my tumour remain stable. And just one to five years if it became aggressive. Suddenly I felt very hot and sick. My sister was devastated and burst into tears. I was an otherwise healthy 50-year-old and it was the last thing we could have expected to hear.”
Over the coming weeks I attempted to process the fact I was living with a ticking time- bomb in my brain. I was confused, frightened and couldn’t think rationally. I often felt isolated and withdrawn and I just wanted to connect with others going through a similar situation.
I had very open and honest conversations with my 17-year-old son about my tumour. We’ve always been really close. He is a grounded, resilient young man and I am so proud of him. Because I don’t suffer from any obvious symptoms, I think he is able to put my illness to the back of his mind.
With treatment posing such a high risk, I was offered routine scans. I’m glad I don’t have to face the gruelling side-effects of chemotherapy, radiotherapy and surgery, and I’m fortunate that I don’t suffer from dreadful and debilitating symptoms. I’m constantly struck by the invisibility of my illness; no-one can see that I’m suffering but I’m living with a life-limiting disease – the emotional impact is often unbearable.
“My emotions can take control of me and that’s something I really struggle with. There have been times when I’m trying to fall asleep and I end up having a panic attack.”
I’m enjoying being back at work and the routine that that brings. My employer has been really supportive and it helps that I’m treated normally.
I recently developed facial numbness and I’m really worried that this could indicate my tumour has grown. I’ve asked for my routine MRI to be brought forward and I’m anxiously awaiting a date for the appointment.
My diagnosis made me realise the importance of research into brain tumours. I’m devastated to learn that historically just 1% of the national spend on cancer research has been allocated to this dreadful disease and I hope that by sharing my
story I encourage people to fundraise for the cause. On our wedding day, Kate and I have decided to hold a raffle and collect donations for the charity Brain Tumour Research
, which funds a research centre at the University of Plymouth. I’m really looking forward to tying the knot and I hope Kate and I can spend many happy years together.
If you have been inspired by Katie’s story and would like to know more about our lobbying, research updates and fundraising opportunities, please sign up to our weekly e-news.
If you'd simply like to help with a donation, please donate here.
Together we will find a cure.