In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
In August 2014, a CT scan revealed that Cat, aged 36 and the mother of Robert, 15, had a brain tumour. Following surgery and a biopsy, the devastating news came back that the tumour was in fact cancerous – suggestive of a metastatic spread, but, on a positive note, was a grade 2, slow-growing type of tumour. Just a few short months later, with Cat experiencing headaches again, further surgery revealed the earth-shattering reality that the tumour had progressed from grade 2 to grade 4. Cat’s family and friends all rallied round to help and to fundraise, resulting in the setting up of a fundraising group called Cat in a Hat. Tragically, by the spring of 2017, Cat was no longer responding to any treatments available. She passed away on 14th June that year.
“I started to think Cat would beat the brain tumour or, if not, at least keep it at bay for many years due to her strength and positive attitude. I even found that Cat’s brain tumour wasn’t always the last thing I thought about at night or the first thing I thought about when I awoke.”
Here is Cat’s story as told by her father, Rab…
Cat’s son Robert was born on 5th January 1999. He had a cleft palate and lip, which was quite a shock to start with as it had not been picked up the routine ultra-sound. It was explained that with surgery it could be put right. Robert had the first of several operations when he was just six months old. The final operation to take a bone graft from his hip to fill the gap in his mouth took place when Robert was still at Danesholme Junior School in Corby. It’s an irony that Cat and Robert were no strangers to hospitals!
In June 2014, Cat started consistently complaining about having headaches and feeling tired, but none of us was unduly concerned. We put it down to Cat being quite sporty – running and going to the gym – and just thought she was over-doing things a bit.
Early the following month, we were getting ready to go to a family wedding back in Glasgow (where Cat was born and raised for her first year and still has lots of family) when Cat started feeling “sea-sick” and dizzy. She was diagnosed with labyrinthitis – strangely, some days she felt fine and others not.
Cat, her partner James and Robert all made it to the wedding, however, and she appeared to have a good time. Not long after returning from Glasgow, James rang me to say that he had taken Cat to A&E in Kettering after it appeared that she had had a fairly significant seizure in the car. After an ECG, James and Cat were told that it was probably down to a migraine. Cat was a migraine sufferer which she inherited from me. Around this time Cat began to worry that there might be some serious underlying cause to her symptoms.
Paradoxically, Cat was worried she might have a brain tumour, but I didn’t think this to be the case, even though I am a qualified general nurse. In hindsight, I think I didn’t want to contemplate the possibility that Cat might have a brain tumour. I was, however, worried enough to suggest that Cat should seek further clarification about her diagnosis. I suggested she went back to the GP and ask for a referral to an ENT consultant, which she did, and thankfully her GP agreed and made the referral.
An appointment was arranged with a consultant who I know at the private hospital where I work. Cat was asked to do a variety of physical tests and, although the consultant wasn’t too concerned, her inability to do some of them satisfactorily motivated him to organise a CT scan just to be sure. He did, however, say he didn’t think her symptoms indicated labyrinthitis.
Following the scan, Cat was asked to come back into the hospital the very next day. She was obviously quite alarmed and rang me. I told her I would be working, but that, if she let me know when she arrived, I would join her. It was the 18th of August – the day before her birthday. Before I even got to her, she was called in and the consultant said: “I am really sorry, but we have some very bad news.”
Cat didn’t want to hear it. She just shut down. I arrived and could see that Cat looked stunned. She said: “Tell Dad, I don’t want to know.” A nurse took Cat for a cup of tea and the consultant showed me the scan and said there was a tumour which she thought was suggestive of a metastatic spread. Cat had previously found lumps in her breast which she had been told were harmless cysts, but now her mum and I began to wonder whether this could be breast cancer which had spread to the brain. These were horrible times.
We were sent to Addenbrooke’s Hospital so that Cat could have a more specific MRI scan and the results came back quickly. Cat was very anxious, waiting to be called in, not helped by the fact that the waiting room was full of people at different stages of treatment, some with no hair. Cat was in a state of shock and kept saying: “Talk to my dad.” It was at this point that we were all told by a specialist nurse that the tumour didn’t have any blood supply and didn’t look cancerous. They were optimistic that they could remove all the tumour – it all seemed more hopeful than we had previously been led to believe. We had gone from believing Cat had cancer to the seemingly less scary prospect of facing brain surgery.
Her operation was booked for the following week. Poor Cat, who would faint at the sight of needles, was forced to toughen up fairly quickly. In lots of ways Cat was very girly – she loved dancing and music, but she also had a tough and determined side and was capable of “getting in the zone.” Cat and I used to go out running together and it was always her who would be encouraging me to keep going. Before she was diagnosed, she ran a 10k for Marie Curie and persuaded me to do it with her. I remember training for it and struggling to run up Rockingham Hill, which is a long, quite steep ascent near where we live. Cat would say to me: “You are as light as a feather, Dad. The wind is lifting you and blowing you up the hill” whenever I felt like giving up.
Cat’s first surgery lasted around six hours, but an hour after being back on the ward, Cat was sitting up in bed and we have photos of her smiling and giving us the thumbs up. A member of the team came around, stood at the bottom of the bed and told us they had “got it all out”. Cat was still in a daze, but I was thinking: “Hang on a minute – don’t get too excited.”
The results of the biopsy brought us crashing back down. The tumour was malignant, but we were told it was grade 2. They hadn’t been able to get it all out either. The only good news was that it was slow-growing.
Cat came home, but didn’t get on as well as was hoped. She was putting a brave face on things, but James could see that she wasn’t good and also noticed that her memory had deteriorated. Initially we didn’t know what to expect and put everything down to the fact that she had had her skull split apart and some of her brain removed.
After a couple of weeks, James noticed pus coming from her wound and she had to go back into hospital because she was suffering with an infection. I don’t understand why the surgeons don’t give intra-venous antibiotics prophylactically on induction of anaesthetic. This would be routine with any orthopaedic (bone) surgery to prevent infection. They now had to open Cat’s skull again to put in a drain and take the infected bone flap out of her skull.
Cat returned home just for the weekend because we were having a Halloween party for our grandchildren and she was desperate to join in, even though she wasn’t feeling very well.
Following her full discharge back home, Cat needed IV antibiotics twice a day through a special long line which James and I were taught how to administer. Cat had to go back and forth to Addenbrooke’s weekly at this point for regular blood tests and to check the line. Meanwhile, James was often having to call the hospital with concerns over Cat’s welfare.
Cat began to experience headaches again. Her medical team was unhappy with the results of a further scan and decided in early December 2014 that Cat should have a third operation in as many months.
The surgery went ahead with Cat taking it all in her stride. We were told that they had been successful in taking more of the tumour out. A titanium plate was inserted into the opening where the bone flap had been. Cat asked whether as they had put a lid on it, this meant they couldn’t do anything more! She was very matter of fact and not at all tearful.
A week later we were given the devastating news that the tumour had progressed from grade 2 to grade 4. They couldn’t explain why it had changed so quickly but told us they had even re-checked the initial biopsy. They insisted there had been no mistake. Cat remained positive and told us she would beat this.
Cat was living with us in Kettering now along with James and Robert. We wondered whether it would be Cat’s last Christmas and how we were going to enjoy what should be a happy occasion. Of our five grandchildren, we knew Robert who was 16 would understand, but Cat’s sisters’ children were a lot younger…
In the event it was Cat – always so brave and positive, who saved the day. She decided we should have a silly Christmas jumper theme and so, along with our other daughters, Lizzie and Lainy, and their families, we all donned our seasonal sweaters (the funniest and craziest we had been able to find) and had a good time.
Cat had already decided that she didn’t want her condition to dictate our lives even though she had been told that she would be having radiotherapy and chemo for six weeks on a daily basis starting in January 2015.
She went across to my local barber and asked him to shave her hair to a short crop as she wanted to take control of her hair loss and thought that this would be easier than finding that her shoulder-length hair was coming out in clumps. From then on she started wearing hats and gathered quite a collection, having had many donated to her by kind-hearted family and friends.
I had been formulating a plan to start a support page on Facebook as a way of updating people with the latest news of Cat’s treatment and my brother, Sam, and one of Cat’s sisters had an idea to call it “Hats for Cat”. One of my grandsons then suggested the name “Cat in a Hat”, which we thought was particularly apt so that became the name we adopted.
The page was particularly helpful for our family in Scotland and meant we didn’t have to constantly keep on answering the same questions about Cat’s health. People could easily find out the latest developments through “Cat in a Hat”.
Cat got through her treatment pretty easily and never complained. It was quite traumatic for me when they were making her radiotherapy mask and pushing it over her face and even more so the first time she had her treatment with the mask bolted to the table. It made me quite tearful, but Cat just crossed her legs and tapped her toe along to the music she was listening to.
We had so many people wanting to help (by this time Cat had lost her job as a driver) – including offers to help pay the expenses of our daily trips to Addenbrooke’s. We had morale boosters too like my niece, Charlene, doing a head-shave, along with my 11-year-old granddaughter, Safie, and Charlene’s husband, Robert, who was charging £5 a strip for people to wax his chest and legs. His mates loved that! In the end it turned into a big fundraising event which raised around £4,000, half of this going to Brain Tumour Research, including match-funding of £1,000 from Robert’s company British American Tobacco. Cat’s 16-year-old cousin, Shannon, also had her head shaved a week later, raising several hundred pounds herself.
A family friend, Laura Brown, held a family fun day at Wicksteed Park in Kettering with monster trucks, characters from the film Frozen, stalls, musicians, candy-floss, beat the goalie and a treasure hunt, all of which helped to raise well over £1,000.
Also, further funds were raised when a local fitness trainer, Jason Strachan, took a group of his students, which included Cat’s then 16-year-old son Robert, round a 10k assault course called "The Suffering” at Rockingham Castle, resulting in more than £1,000 in donations.
By the time that friends of the family had held an Open Mic Night at a local pub and Cat’s best friend, Tara had completed a 10k sponsored walk with a group of friends and supporters, we decided that it was time to organise ourselves more formally into an official fundraising group called appropriately Cat in a Hat to raise funds and awareness for pioneering UK charity, Brain Tumour Research.
Along with so many of Cat’s friends and family members, and despite my nursing background, I was shocked to find that that just 1% of the national spend on cancer research has been allocated to brain tumours, yet it is the biggest cancer killer of the under 40s. We are all doing our bit to make a real difference and hope that more effective treatments and ultimately a cure for brain tumours can be found, even though it’s now too late for Cat.
Meanwhile Cat remained positive and upbeat. She would say that no one can really tell when they are going to die – you could be killed in an accident tomorrow… Her mantra was: “I don’t feel like dying, so I am just not going to bother!”
In August 2015, around the time of Cat’s birthday, I took up the challenge to do a parachute jump with a couple of friends. I am absolutely terrified of heights and initially turned down the idea, but one day when Cat was at Addenbrooke’s having her radiotherapy and waiting for chemo, it brought it all home to me how brave she was. She had gone from a real phobia about needles to having three lots of brain surgery and the subsequent treatment, never pitying herself. When I told her what I had decided to do she burst out laughing and said: “Dad, you’re too frightened to do a parachute jump!”
I had nightmares leading up to the day of the sky-jump and really thought I wouldn’t be able to go through with it, but in the end, it turned out that I was stronger than I thought. Last year Cat joined me when I did a second jump, along with my mum who is also called Catherine – three generations sky-jumping together! Before Cat jumped we checked with her doctor at Addenbrooke’s when she went for one of her three-monthly scans which showed the tumour was dormant, whether there was any reason why she couldn’t do it. We were told that there from a consultant’s point of view there was no medical reason why not, but from a mother’s point of view she would say no.
On the day I was still terrified, but Cat as ever seemed to embrace this experience just as she did everything she encountered since her dreadful diagnosis with a brain tumour. She had such a positive outlook.
In fact, Cat never really was a negative person. She always helped people to see the positive side of things and, after her own diagnosis, she took this to another level and seemed even more positive. She helped so many cancer patients at Addenbrooke’s and gave money raised for her to others who needed financial support more than her. She did this all very quietly, however, and not for show. On the other hand, Cat was a strong character too – she wasn’t one to be messed with.
Cat didn’t seem to suffer adverse effects from the sky-dive and when she was feeling well would continue to go out walking with her dog or go out jogging, which did worry me and her mum a bit, but she was so fiercely determined.
She was back living in Uppingham with James and Robert and one day walked into the Age UK charity shop in the High Street to ask if she could volunteer. They took her on immediately and she enjoyed working there on Thursday afternoons and some Saturdays as well. She felt it gave her a bit of purpose.
By this time Cat’s hair had started growing again and she started experimenting with colour going from dark to pink, blonde and then dark again.
I started to think Cat would beat the brain tumour or, if not, at least keep it at bay for many years due to her strength and positive attitude. I even found that Cat’s brain tumour wasn’t always the last thing I thought about at night or the first thing I thought about when I awoke.
Sometimes, however, Cat had days when she couldn’t do anything. One day she collapsed at the charity shop and James and I had to carry her home. There were probably other worrying signs which I didn’t know about, but of which James was aware.
We managed to enjoy some lovely family holidays in Cornwall and Devon and Northampton Saints’ charity, named after their Chairman, Leon Barwell, provided us with a weekend at Center Parcs when Cat was initially diagnosed. We have some lovely memories of those happy times together.
But in December 2016 we became only too aware of more warning signs, including memory loss and confusion (like Cat had experienced after her first craniotomy). Sometimes she said things more than once and when we pointed this out to her, she would laugh.
Her symptoms started to trouble her more and more. She was back on steroids and the dosage of these was increased, making her put on a bit of weight.
A scan was booked for February, but before that, in January, Cat accompanied Margo and me to a charity event in London. We stayed overnight. In the morning Cat was trying to get up and ready and needed a lot of help. It was quite worrying, but we put it down to Cat being over-tired.
When we went into see the consultant for the results of the scan we could see he was surprised at the change in Cat. She had always been slim and so bright and bubbly, but now she was carrying extra weight (not just as a result of the steroids, but also from an increased taste for chocolate and sweet things) and she was in a wheelchair due to her reduced mobility.
We were used to Cat not wanting to hear her results, so I signalled to Margo to wheel Cat out, but before this happened the consultant delivered the awful news that the tumour had spread from back to front on the other side of her brain. Fortunately, Cat didn’t seem to process this news, so it didn’t seem to affect her.
We were told that chemotherapy would be restarted and that the plan was to continue for six months with a scan after three.
By this stage, Cat was back living with us. Initially she had needed one person to help mobilise her, then it took two of us to help her get to the toilet. Eventually we needed three people to help Cat mobilise and Margo had to help her with her personal care.
After the rigmarole of getting Cat and her wheelchair to Addenbrooke’s for the three-month scan and then returning a day later for the results, we were told that the chemo wasn’t helping and would stop immediately. It was early May. We were warned that the tumour would progress and that Cat’s prognosis could be measured in months. Probably just two to be precise.
It was a terrible shock. We had held onto the hope that the chemo would turn things around.
Mercifully, Cat seemed to be blissfully unaware. When we got out into the hospital carpark, Cat thought she was in the carpark of our local shopping centre. She was forgetting things very quickly, including not recalling having seen friends very recently. Her short-term memory was almost gone at this point. It was a blessing in lots of ways. She didn’t question why her treatment had stopped or even why people were helping her. She just accepted it all as being quite normal. If there was any blessing at this time it was the fact that Cat didn’t seem to be processing all the changes or noticing the deterioration in her condition, which was happening almost daily.
By this time Cat was registered with a GP local to us and we had the district nurse coming in. Cat had now become immobile in bed. We had amazing help from the Hospice at Home team who worked with Cransley Hospice, although Margo continued to take the lead, particularly with Cat’s personal needs, with both Lizzy and Lainy helping in the latter stages. Cat had a hospital bed provided by the NHS.
By early June, Cat was having mini-seizures and we were worried she might be in pain as she was unable to communicate verbally by then. The hospice suggested a cocktail of drugs including morphine delivered through a syringe pump. This meant she would be effectively asleep from this point due to the drugs. I was familiar with this at work. It is sad that all communication is then lost, but we consoled ourselves, assured that Cat was comfortable. I knew from experience we were entering the last days…
The day before Cat actually died, I thought that this was going to be her last. I asked our other daughters and Robert too if they wanted to be there with Cat at the end and told them they didn’t have to make up their minds immediately. Cat lasted that day and then Robert, James and I sat with her through the night.
We were playing Cat’s favourite music from her playlist – she always used to listen to music and especially when she was in the shower or doing her hair and would often join in singing.
The following morning at 8am a new nurse arrived and asked to see the folder to familiarise herself with Cat’s care. Lainy and Lizzie were dropping their kids off at school when Cat’s breathing changed. I went into Margo to ask her to come through and went to Robert’s room to ask him if he wanted to come through too.
Just as we gathered round her, Cat took a deep breath and then no more.
After she had gone, the track which came up on her playlist was “Can’t live without you” by Maria Carey. What are the chances of that happening?
Lainy and Lizzie had arrived and brought breakfast, but Cat had already gone. I went down to the kitchen to tell them. They were so upset to have missed her passing, but in a way, as they had been undecided whether to face the end, we felt that Cat had taken the decision out of their hands.
We had a horrible wait for the doctor to come out and certify the death. He then told us we could phone the funeral directors. It was an almost unbearable wait for them to come for Cat and was particularly hard for Margo at this point.
Then we were left with an empty room, apart from all the equipment Cat had needed.
We kept busy doing practical things like contacting people – immediate family and close friends by phone. Some of them were absolutely distraught, so we found ourselves comforting them.
Somebody came to collect the hospital bed and commented: “So you don’t need this anymore!”
Planning the funeral was a mammoth task and very emotional for all the family. We desperately wanted to make Cat proud.
In the end the funeral was lovely. We held it in the church in Corby where Cat used to go to Sunday School and David, who took the service, is a good friend and had known Cat during her younger years. A Highland piper and drummer played as Cat was brought into the church with the tune “Highland Cathedral”. They also played “Flower of Scotland” at the graveside as Cat’s coffin was lowered in.
James chose as the first song “Into my Arms” by Nick Cave. It was very powerful. Whilst walking down the aisle, I was tapping on the coffin which was made to look like a brown parcel, labelled “Return to Sender” reflecting Cat’s sense of humour. I thought it would amuse her because she used to tell me off for “tippy-tapping”, particularly along to music.
Former youth leaders who knew Cat had got together beforehand to form a singing group and they sang an incredible cappella version of a wee chorus which was a favourite of Cat and Lainy’s, called “Jesus is Lord”. Another song we had chosen was “Soul Sister”. As I was drifting off to sleep one night, I think Cat put it in my mind that we could dance to this one. Worrying that it might seem a bit daft, I asked David if he would ask the congregation to stand, then move to the left and then to the right and then, once the music was on, ask people to carry on moving. That’s what happened and everyone sang and danced.
At the graveside we had Scottish and English soil for people to choose from. The Scottish soil came from beside a loch which we used to take Cat to regularly in her pushchair.
We invited everyone back to a local hotel to celebrate Cat’s short, but incredibly full life. She had touched so many people that more than 300 came. James organised a display of photos of Cat starting from when she a little girl, as well as a slide show set to music from Cat’s playlist.
We are trying to get on with our lives, but Cat has left a huge unfillable hole in our family. James is keeping himself very busy at work, as he can’t bear to sit at home alone. He has taken up badminton and is doing a bit of cycling. Robert had intended to take a year out, but has decided to go back to Leicester College, having completed a photography course, this time to do film and media studies.
We are determined to continue raising funds for Cat in a Hat, now in memory of our beautiful daughter, in the belief that we will be making a difference for future patients.
If you have been inspired by Name’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.