In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
We are grateful to Kate who worked with us in November 2016 to share her story here. Sadly, she passed away in May 2018. We remember Kate as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.Kate Hickman, 35, had been feeling tired and run down for a while, when she suffered a sudden seizure in June 2016. Thanks to the concern and persistence of her friends and husband, she was finally given a brain scan where they discovered a “massive shadow”. Kate went through surgery, chemotherapy and radiotherapy and her treatment is still ongoing.
“At the moment, my impression is that this next lot of treatment might be enough. I want to stay positive and most of the time I succeed, but some of that is just a front. I certainly have moments of despair… I feel I just have to try and crack on.”
I had been in poor health since Christmas 2015, but nothing you would associate with a brain tumour. I had cold after cold and just thought I was tired and run down. My daily commute into central Birmingham from rural Worcestershire was an hour and half drive each way, so I assumed my exhaustion was related to that. Looking back, it was my body giving me a hint that something was wrong but, at the time, it was easier to put it down to my busy lifestyle.
I didn’t have much energy for anything outside of work, although when my husband Paul and I moved out of London to the countryside in 2013, I had made a deliberate effort to get involved in the community. I volunteered at the village hall and sang in an “a cappella” choir. I enjoy being out of London, it’s so pretty where we are now.
After months of feeling under the weather, it was getting me down. I went to the GP in June 2016 with symptoms of depression and he signed me off work. I didn’t mention the other things I was experiencing as I hadn’t really registered the potential significance of them myself. I had been finding it harder to make decisions at work, where I’m a volunteer development manager for the National Deaf Children’s Society. There were also some silly mistakes like arranging train journeys and then finding that they didn’t actually get me to where I needed to be on time. I am usually very, very organised so this kind of thing was extremely unlike me. I suppose they were signs that my brain was becoming unable to cope.
On Thursday 23rd June 2016, I had a seizure out of the blue. I had been at home with Paul who, thankfully, had a day off. He’s a Community First Responder with the local ambulance service. After the initial shock, Paul’s training kicked in and he was able to deal with it appropriately. Paul and I had first met through a dating website when we were both living in London, in 2007. I liked him straightaway and it’s actually our 5th wedding anniversary this month [October 2016]. I was so grateful that he was there.
I came around in the ambulance on the way to Redditch Hospital, feeling very scared and in pain where I had bitten my tongue badly. I had never had a seizure before but I knew they were never a good thing. The week following the seizure is a bit of a blank, my memories of those days have never really come back. Paul told me later that I had a few tests but we were told that my blood test was “normal” and I could go home.
Two days later, on Saturday, we were due to go to a party in Coventry. Paul was worried that I wasn’t up to it; I had been napping in the day regularly and that afternoon I was having trouble waking up again. I was insistent that we should go and see our friends, but, as soon as we got there, people started asking what was wrong with me. They could tell instantly that I wasn’t myself, being very quiet, answering with single words and generally being unresponsive. One of them, an A & E matron at a major hospital, thought there was something medically not right and was concerned enough to start ringing around local hospitals to see where I might be able to see a neurologist quickly.
They decided the best thing to do was to call an ambulance. When it arrived, there was some dispute around whether I was ill enough to take in to hospital as, although I was acting out-of-character, there wasn’t anything very obviously wrong. Luckily my friend, the matron, convinced them to take my condition seriously and I went in to University Hospital in Coventry. I had a CT scan early on the Sunday morning and it was very apparent that there was something wrong. The doctors identified lesions in my brain, but they didn’t know what they were so I was sent for a more detailed MRI scan and told they needed to investigate further.
I was moved to the Neurosurgery ward and we waited most of the day to hear the results of the tests. Eventually Paul went home to change and collect things for me, while he was away the consultant told me the news that they had found a “massive shadow” on the MRI scan. The hospital called Paul at 8 o’clock the next morning, saying: “the consultant wants to see you” so he rushed back in. As soon as he arrived, the consultant pulled him aside to show him the MRI scan and tell him privately that it was very bad news, before explaining the situation to both of us. They needed to operate that day and there was a 10% chance I wouldn’t survive the operation, but without it I had only days or weeks to live. There was so much pressure in my skull that the centre line of my brain was no longer straight, now having a distinct kink in it.
At this stage, the doctors were still calling it a “mass”. They told us that I would have a craniotomy, but that treatment would be palliative. At best, they said, they could only remove about half of the mass because of its size and spread, as it was in a butterfly shape. The aim of the surgery was to relieve the pressure in my brain, rather than cure me. Paul then had the horrible task of calling my mum to tell her the news.
We were pretty familiar with cancer in my family. Mum, Jane, had discovered a lump while breast-feeding me and gone through surgery and radiotherapy. She had a second (early stage) breast cancer when I was 18. I had even worked for a breast cancer charity for a few years. Back when Mum was diagnosed the first time, the survival rates were not as good as they are now. The investment in research has been so much higher for breast cancer than brain tumours.
Mum, and my brother Richard, came to the hospital and waited with Paul while I spent seven hours in surgery. They wandered around the hospital, constantly checking their phones waiting for news from the surgical team. The nicer places to wait, like the café, had limited phone signal so they spent hours wandering around, even hanging about in a lift lobby as it had both a decent signal and phone charger point. They were expecting me to come to the Critical Care ward, following surgery, so by late evening they made their way there.
By 10pm I was on the ward, breathing on my own and able to communicate in grunts, although my left side was weak. Mum stayed in the relatives’ room overnight so that someone would be nearby. I was eventually moved back to the Neurosurgery ward a day or two later. The nurses told us that the surgical team was pleased with the way the operation had gone, but we hadn’t yet seen the surgeon. I was asked simple questions like “what’s today’s date?” and “where are you?” and “who’s the Prime Minister?”. It was soon after the E.U. referendum so the last question provoked some laughter.
My brain started recording proper memories again. I remember being appalled to find out that it was 1st July in one of the sessions as, in my mind, it was still 23rd June. I had lost a whole week. I recovered from the operation slowly. The first time I got out of bed I needed two nurses and a walking frame, but I was getting better, building my strength and balance. Mum was fantastic, her experience of surviving cancer made her calm and positive about my situation, which really helped me. They discharged me on 5th July so I was able to go home to my own bed.
I was assigned a specialist nurse, Ian, who was able to tell us some of the details from my operation, a week after my discharge. My butterfly-shaped mass was a high-grade glioma: a primary brain tumour with little chance of spread outside of the brain. They had managed to remove a large segment of it. He didn’t yet have the full test results but told us what the normal course of treatment might be (chemotherapy and radiotherapy) and was fairly reassuring about survival rates.
I had been very worried that it might have been a secondary tumour and that they might find a primary tumour in my breast, like Mum. I knew enough about cancer to be relieved that I didn’t appear to have cancer anywhere else and felt quite positive. My friends weren’t quite so sure, one said “I don’t understand why that’s good news, but if you’re happy, I’m happy.”
Knowing a bit about cancer can be a disadvantage though. I had to face the prospect of intensive radiotherapy applied to my whole brain, due to the diffuse nature of my tumour, which could damage healthy areas as well as the cancer. I have a degree in Psychology and was used to seeing brain scans, so it was a shock to see how much of my brain had been affected by the tumour when I saw my own scans.
I was prescribed painkillers, high-dose steroids and two anti-seizure drugs
when I left the hospital and after a few days I found I needed to eat all the time, like a plague of locusts. Even five minutes before dinner being ready, I would be desperate for a snack and say to Paul: “the locusts are very insistent.” Fortunately, my absolutely brilliant specialist nurse was able to quickly adjust my steroid dose. It was annoying to be putting on weight again though, as I had successfully lost five stone over the last year.
I saw the oncologist for the first time ten days after being discharged from hospital. It was a hot day, the waiting room was stifling and the clinic was running late. When we finally got to see him, we were already feeling a bit fried and unprepared to hear the devastating news that my tumour had been identified as a grade 4 glioblastoma multiforme (GBM), one of the most aggressive forms of the disease. We were too shell-shocked to ask many questions and looked it up when we got home. The terrible survival rates threw us into a complete panic. I thought, “Oh my God, I'm not going to live to see my 40th birthday!" We quickly got in touch with my specialist nurse who was able to correct this mistake and tell us the slightly better news that it was a grade 3 oligodendroglioma.
Radiotherapy started in August with the horrible mask you have to wear to keep your head completely still. I lost most of my hair, by my next MRI scan in September I only had a few wispy bits left. We had an appointment with the neurosurgeon in October, where he said I was looking well and showed us the latest scan. The swelling in my skull was reduced and my brain’s centre line was straight again. We also saw the oncologist who explained that he could now draw a circle around the tumour bed, which was better news as it had been so spread out before the surgery and radiotherapy. After the shock of what Google had told us, we deliberately didn’t ask either of them about my prognosis.
The plan was now to target the tumour with more radiotherapy plus six rounds of chemotherapy with three different drugs. The side effects were not great: nausea and hair loss. I can’t eat or drink certain things with one of the drugs, like soft cheese, beef or red wine, so I hope the course will be completed by Christmas! At the moment, my impression is that this next lot of treatment might be enough. We have to wait and see how my next scan goes.
I came across the charity Brain Tumour Research while researching brain tumours and looking at Facebook for related groups. I want to help change things so I am leaving a legacy to the charity in my will. It’s shocking 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.
Cognitively, I feel pretty normal. My memory and ability to plan and organise things are back, although it still takes ages for me to make a decision. I don’t fully trust myself and rely heavily on Paul to advise me if my thought processes sound logical. I’m not back at work. We are lucky to have great friends and family around who have been wonderful, although the raw reality of cancer can be a bit much for them sometimes. So far, we’ve been managing without needing too much extra help, but I’m banking it all up so I can say: “Remember, months ago when you asked if I needed any help? Well, now I need it!”
I want to stay positive and most of the time I succeed, but some of that is just a front. I certainly have moments of despair… I feel I just have to try and crack on.