In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Katie’s baby was induced after her brain tumour was diagnosed in the late stages of her pregnancy. She has undergone surgery to remove a grade three anaplastic astrocytoma. Having finished a course of radiotherapy she is now hoping chemotherapy treatment to prolong her life will continue during the coronavirus pandemic.
Katie tells her story…
I was heavily pregnant with my third child when I first realised something was wrong. My husband Daniel, a GP, was on a work trip to Italy in April 2019 and I had taken the opportunity to go with him along with our children Sofia, who was then four, and Hugo who was two.
When I started to suffer from painful headaches I put it down to the stress of being away from home and the logistics of managing two small children in a strange place while being seven months pregnant.
The pain at the top of my nose and between my eyes was happening every day and I also experienced a really strange smell which I can’t describe. On top of this I had a strange tingling sensation on the left hand side of my body.
As a medic, these symptoms were throwing up a red flag for Daniel but health professionals back home at first passed them off as hormonal and pregnancy-related. I didn’t feel that things were right; I had been through two normal pregnancies and none of these things had happened to me before.
The symptoms had continued once we were home, at times I would wake up with the strange smell and sensation until, seven weeks later when I was 39 weeks pregnant, I had a full seizure while I was I bed. Fortunately Daniel was there with me, he dialled 999 and I was taken by ambulance to Musgrove Park Hospital in Taunton.
“I underwent lots of tests including a CT scan and an MRI and was told later the same day there was a mass on my brain.”
Things moved pretty quickly from there; the doctor said it looked aggressive, they wanted to act quickly and to induce the baby.
It was horrific. I was in shock and felt as if I was being robbed of the birth experience that I wanted and had been able to have with our two other children. However, it was fortunate that the baby was so nearly full-term. Childbirth is always difficult but you have that image in your mind of holding your newborn and then the photo of you looking exhausted but happy. I was robbed of that too: I looked like a woman in shock who had just been told she had cancer and who had given birth in traumatic circumstances. And then of course the calls to friends and family to let them know our new baby Mario was here were completely overshadowed by my diagnosis.
Mario was born on 5 June and on 9 July I went into surgery in Bristol to remove the brain tumour. The operation lasted for ten hours and the tumour, later identified as a grade three anaplastic astrocytoma, had grown to the size of two golf balls on the frontal lobe of my brain. My head was swollen and thumping for days but I was determined to get out of hospital in time for Sofia’s fifth birthday on 14 July.
After the surgery I had to have 33 sessions of radiotherapy, travelling to Exeter every day for six and half weeks from our home in Somerset. My diagnosis meant I was no longer able to drive so I relied on others and, to lessen the alarm for Sofia and Hugo, we always tried to drop them off at school and nursery and then be back in time to collect them. Baby Mario would come with me every day and there were plenty of people at the cancer support centre who were happy to hold him while I had my treatment.
Radiotherapy finished in mid-October and then, in November, I started 12 cycles of chemotherapy. I have just finished cycle five and hope that I can continue with the treatment during the coronavirus pandemic. No-one wants to do chemo but I know that I have to get on and do it in order to prolong my life. I will do whatever I have to to be with my family for as long as possible and my worst fear is leaving my children behind, the children who we love so much and who I can’t even bear to think may have to grow up without their mummy.
“Treatment has left me with suppressed immunity and so I am high-risk should I contract Covid-19. I feel very vulnerable and know that doctors are likely to have to make difficult decisions on who to treat and who not to treat during this dreadful outbreak.”
Being a young mum, I would hope that health professionals would still choose to treat me should I become ill with the coronavirus. However I do worry they would have to make a difficult choice between treating me and someone else. Having a brain tumour makes things more complicated and less likely they would choose me over an otherwise healthy person. That is a frightening thought.
Following my operation the surgeon was very optimistic but I know that the prognosis for people with the type of brain tumour can be as little as a few years. I am trying not to think about any kind of number at the moment but, instead, concentrating on the quality of my life.
Daniel is a GP at a practice in Somerset and, at the moment, home-based and seeing patients remotely. Life seems very complicated as we, like so many others, try to cope with home-schooling and not being able to get help from friends and family.
I feel as if we are being thrown challenge after challenge. I just wish that somehow, someone somewhere would give us a break. There are only so many times you can keep picking yourself up. It is vital that we keep fighting to find a cure.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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.
Brain Tumour Research is determined to change this.
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