In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Rebecca “Bex” was just 23 when she was diagnosed with a grade four glioblastoma multiforme (GBM) brain tumour and told she had a year to live. She outlived the prognosis, surviving for nine years, and despite being told her extensive treatment would leave her infertile, gave birth to a “miracle” daughter who was seven when she lost her mum in June 2017.
“Although there was no change in Bex’s tumour for six years its presence was always there, casting a shadow, and it was as if we lived on a knife-edge as we waited anxiously from one scan appointment to the next. Bex was really positive where I was more realistic and ensured her daughter Phoebe was prepared from the beginning for what was likely to happen. Phoebe had always known she was going to lose her mum and we are now her Moma and Popa. She is a delightful child, so much like Bex and it is hard not to cry as she catches me unawares by saying things like how much she misses her mum’s warm hands and I know exactly what she means.”
Rebecca’s mum Claire tells her story:
Our daughter Bex had recently been promoted and loved her job working with young adults with learning difficulties at a residential college. She had only been there for around six months when she decided the time was right to get a bit more independence and to move into a little flat in the village. She was in her early 20s and the future looked very bright.
Somehow during the move, Bex had managed to hurt her foot, it was as if she had bruised herself climbing steps while she was carrying boxes. It got so she couldn't move her toes and the doctor said not to worry but he was going to send her for a CT scan, it was just a precaution but clearly he was concerned it could be serious.
It was May 2008, Bex was 23 and we were called into a small room where we were told that the scan had revealed a large mass on her brain. We were transferred from the Pilgrim Hospital in Boston to Queen’s Medical Centre in Nottingham. On 29th May, Bex was in surgery for nine hours. When she came round, she was paralysed. The ward was so busy that I couldn't bear to leave her and so I stayed with her for a month.
Eventually, a bed was found for Bex on a stroke ward at The Pilgrim but she had been there for just one night when we had a call from Queen's to say we needed to go straight back as they had found another tumour on her scan and she needed further surgery.
The tumour was a grade four glioblastoma multiforme (GBM) and Bex was back in surgery within two weeks. There was another struggle to find her a bed where she could continue her rehabilitation and, by then, we just wanted to bring her home. At that stage, Bex was unable to walk and couldn't sit up on her own. She could speak a little. She was determined to get upstairs to her bedroom and, somehow, with a bit of pulling, shoving, and carrying, we managed to get her there.
As Bex was now an outpatient we had to wait for six weeks for the physiotherapy she so desperately needed. By then she had piled on the weight because of the steroids she was taking and it was dreadful to see her slumped in bed.
Through sheer determination, Bex got herself on the road to recovery. She regained her mobility and her speech came back more or less normally. Not being able to drive to work left her devastated. Although we knew things were serious this was the first time we were actually given a prognosis and it couldn't have been worse; it was terminal and Bex could have as little as a year to live.
Although the tumour was incurable the oncologist said he was willing to try chemotherapy but it would destroy any chance of Bex having a family; it was a devastating blow but, with such a poor prognosis, no-one was looking too far into the future.
We had been told initially that the tumour was too big to respond to radiotherapy but we managed to get referred to the Royal Marsden for a second opinion and, three months after her second operation, Bex started on a treatment regime of radiotherapy and the chemotherapy drug Temozolomide. She coped very well and although, at times, she felt really ill she was determined not to let anything get in her way.
As these events unfolded over the first year, it was as if we were living a nightmare. Bex actually survived for nine years before we lost her so we had all of that time to get used to the fact that we were going to lose our daughter. It was horrible and I think I did most of my grieving in that first year. We know that we were very, very fortunate that Bex lived for so long and that time also allowed us to prepare for the fact that we were going to lose her.
Bex did look into going back to work but she realised she couldn't remember to take even her own meds and so wouldn't be capable of delivering the level of care required to look after the vulnerable people in her care. She was understandably frustrated at losing out on her career and missing out on the social life she could rightly have expected. Throughout the six months of radiotherapy and chemotherapy, we made the five hour round trip Monday to Friday to Sheffield. Things were OK for a while. The frequency of scans dropped from three months to six months and then just once a year.
Six years later the tumour was active again and Bex was back on the Temozolomide but there was no improvement after three months. Bex's surgeon was willing to operate but this time, she was very, very poorly afterwards and on acute care for eight days as they fought to control her seizures. Once more, she got through it and was back home, although unable speak or walk without support, two weeks later and again her sheer determination meant her condition improved.
She got on with her life as best she could and we were all completely shocked but overjoyed when we discovered in October 2009 that, against the odds, Bex was pregnant. We had been told in no uncertain terms that this would be impossible but somehow, yet again, Bex proved the doctors wrong. Although unplanned, the pregnancy was a wonderful gift and gave Bex something to live for, suddenly her life was about so much more than her illness. Bex was a single mum but far from being on her own.
Our miracle granddaughter Phoebe Hope was born in June 2010. There had been concerns about how changes in blood pressure would affect Bex’s tumour and to what extent the drugs she had taken might damage the baby’s muscle tone. Happily all was well with mother and baby. Bex’s dad and I helped out a lot as it was hard for her to manage a new-born with the residual weakness, caused by surgery, down one side of her body.
Although there was no change in Bex’s tumour for six years its presence was always there, casting a shadow, and it was as if we lived on a knife-edge as we waited anxiously from one scan appointment to the next. Bex was really positive where I was more realistic and ensured that Phoebe was prepared from the beginning for what was likely to happen as I knew she would end up in our care. As Bex’s balance deteriorated I persuaded her to bring her daughter Phoebe to live with us.
It was October 2014 when the tumour came back. We had been for a scan and the result shook us so badly that we didn’t make it to my brother’s wedding which took place later that same day. The tumour was back and double its size. Bex was in surgery a month later and was very poorly afterwards, having seizure after seizure, was very aggressive and irritable and shouting. I am pleased that she has no memory of this and, as time went on and we cared for her, she got back to her normal self. Phoebe would sit on her mum’s bed, giving her a foot massage and talking to her. In fact when we all thought Bex could no longer speak, it was Phoebe who discovered differently – Bex picked up a children’s book left by her side and began to read out loud.
When we took Bex and Phoebe to Disneyland Paris in December 2014 everyone thought we were mad but we knew it was now or never. Bex was in a wheelchair and Phoebe would ride round on her knee as we explored the park and had lunch in the castle with Cinderella.
The road to recovery after the third surgery continued to be long and arduous. Follow-up chemotherapy was delayed because Bex wasn’t well enough and by the time treatment began the tumour was back to its pre-op size. The operation had been a gamble which didn’t pay off. I felt as though we were fighting a losing battle but Bex wanted to keep going. She endured another nine months of PCV chemo telling her oncologist she was “absolutely fine” when in reality it made her dreadfully sick.
The tumour stabilised and, by the time she was six, Phoebe knew everything there was to know about brain tumours. Anxious about what her school friends would think when her mum died, she confronted things by giving a talk to her class and explaining the disease and that there was no cure for people like her mummy as there wasn’t enough money to pay scientists to find one. The next time the tumour was active Bex was offered carboplatin chemotherapy but, to my surprise and relief, she turned it down saying it would stop her getting on with things. We continued to make contact with leading experts to see what alternatives might be available and it was important to us all to know we had tried everything.
By October 2016 it was looking as if Bex had just weeks left. We celebrated an early Christmas at home and explained to Phoebe that it would probably be mummy’s last. Still she carried on and we organised things we knew Bex wanted to do such as riding a pony and visiting my old horse Bailey who gently put his head on her lap as she sat in the car and looked out at him. Phoebe visited Santa in his grotto and made a wish for two things: a toy (Shopkins characters) and for her mum not to die.
Bex’s strength of character and resilience continued to shine through as she asked our vicar to help plan her funeral. Phoebe was involved too, choosing Changes In My Life, which was played at her Christening and was one of her mum’s favourites.
In the final weeks, Phoebe was often the first to notice the deterioration in her mum who was slowing leaving us, on one occasion saying ‘I think that’s the last time I’m going to see mummy awake.’ Somehow, defiant to the last, Bex held on to see her daughter’s seventh birthday and we gathered around her bed for presents and cake.
We managed to keep our sense of humour with Bex even joking at one point that it was embarrassing that she was still with us. Bex’s father and I, her brother and auntie, were with her as she closed her eyes for the last time and Phoebe came home from school early to say goodbye.
Her funeral took place at St Mary’s Church, in our village of Tetford, Lincolnshire, the following Thursday. It was a brilliant sunny day and Bex was carried to the church on a pony and trap. Phoebe looked like a queen as she followed in a little cart pulled by a Shetland pony and around a hundred villagers wore floral clothes and held bunches of flowers picked from their gardens and hedgerows. It was beautiful.
Phoebe’s had always known she was going to lose her mum and we are now her Moma and Popa. She is a delightful child, so much like Bex and it is hard not to cry as we lay on my bed listening to The Archers – she must be one of their youngest fans! Sometimes she’ll catch me unawares by saying how much she misses her mum’s warm hands and I know exactly what she means.
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.
If you have been inspired by Bex’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://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.