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.
“Losing Mum has left a huge hole in my life and for her to die from a brain tumour was the most horrible way for her to go. She changed so much both physically and mentally. It was awful watching her deteriorate in this way. But whilst it was absolutely heart-wrenching to lose the woman I considered my best friend, I would have hated to see her continuing to suffer for any longer. I feel for anyone who has to go through the agony of a brain tumour.”
Here is Kathy’s story, as told by her daughter Jenny White…
Mum lived for her family and only went to work after her three children had gone through primary school. For 16 years, she was a teaching assistant at St Paul’s C of E Primary School, having initially volunteered to help with reading. She was totally dedicated to helping children with their reading and managed the library which has since been dedicated to her memory. It’s lovely to think that there are hundreds of children and young adults across Nuneaton who have fond memories of her assisting them with their education.
She was a member of a rambling club and had joined New Horizons, a social group for people who had been widowed or divorced, and had an active social life. Along with being a devoted grandmother to Evelyn, she was a loving and dedicated mum to me and my younger sister and brother, Laura and Bobby. She was always quick to help with relationship advice or the practicalities of running a home, such as gardening or our ironing! She loved nothing more than getting us all around the table for Sunday dinner at her lovely bungalow, she would cook up a storm (usually with two puddings) whilst enjoying listening to our banter around the table.
Mum’s decline when it came was rapid. She suffered a major seizure on 18th January 2015 and phoned a good friend and work colleague to say she was going in an ambulance to George Elliot hospital. She was later transferred to Coventry University Hospital. The phone call was confusing as Mum was obviously in the grips of the tumour and was incoherent and her messages did not make sense. By the time we had gotten into Walsgrave to see her, she had been placed in an induced coma whilst they assessed her. She was diagnosed the following day with having experienced a stroke – incorrectly, as it turned out. We took her home and my sister Laura took control of her care routine. Between the three of us, we never left her side. When Mum had five or six days of tremors we had to do battle with the GP and the hospital in order to get them to investigate and find out what was happening. A couple of weeks later she had an MRI scan with contrasting dye. It was only then that we discovered the horrible truth – Mum had a grade 4 glioblastoma multiforme (GBM4).
Aside from the seizure, in hindsight, there had been other symptoms. Mum had been experiencing pain in one arm and also a persistent cough for at least a couple of years – always without explanation or diagnosis, despite many visits to her GP.
Mum, Robert, Laura and I sat with the oncologist, a Macmillan nurse and his colleague while they explained that Mum had a GBM4. They were very grave in their demeanour and this should have spoken volumes, yet, despite quick google searches returning a bad prognosis, we remained positive. The C word wasn’t even mentioned. In fact, the sheer weight of the diagnosis didn’t really hit us until many weeks later. We just thought she would have chemo or radiotherapy and we would get our mum back.
As time passed, Mum started losing her speech and mobility. In a quest for a better understanding of the horrendous illness, we all did our own internet research. I think we all started to realise she wasn’t going to come back from it. She was on a very high dose of steroids to keep the swelling in her brain down – she had three tumours covering the core of her brain and we were told that these were inoperable as they were intertwined with her brain.
Where Mum had the scan, she had a large chunk of hair shaved off. She hated this, and, despite having beautiful soft, thick brown, shoulder-length hair, she decided to go for an urchin crop. Laura took her to a local hairdresser as she was threatening to shave her own head! She didn’t want to hide under a wig, but became very adept at wearing a headscarf.
Once home, and dosed up with her medication, the steroids caused Mum to develop diabetes and she had other side effects from the drugs she was taking. We had to monitor her blood sugars practically hourly and administer insulin via injection when necessary. This made things even more difficult and was nothing to do with diet – it was all down to the steroids.
We had to become experts in medication and caring in general. Between us we drew up a rota of who would stay with her at her home, ensuring she was never alone. We did battle with the GP and the chemist to ensure her medication was available and that it was changed when necessary. Mum was getting infections really easily (a result of the diabetes) and there were constant questions we needed to ask the relevant medical professionals – it was like we had to become part-time nurses overnight while juggling full-time jobs and in my case, parenthood too.
We wanted Mum to be happy but also healthy, so we were constantly trying to keep her blood sugars down by buying and preparing home-cooked, healthy food – anything we could do to give her the best shot. In reality nothing we did helped… the Maltesers that brought her so much pleasure, but we limited for her health, we may as well have let her eat a bucket-full!
We were blessed with amazing help from some ladies who came from the Mary Anne Evans hospice, who were angels to us and enabled us to look after Mum in her own home, which thankfully and helpfully was a bungalow. We researched and brought things to help her, like a lift for the bath. The district nurse also helped by getting a hospital bed and adapted bathroom equipment, which all helped us to be able to keep Mum at home, where she wanted to be. The hospice ladies helped us with the really difficult things such as intimate hygiene, which was something we never expected to have to do for our mother. But they also helped us, by just being there, by giving us a hug, and letting us know we weren’t on our own.
Laura would manage the bulk of Mum’s care and came over from her home in Lutterworth near Leicester to spend two or three days a week at Mum’s. She cut down her time at work as a secondary school teacher and worked tirelessly to keep us all organised. She always had a plan and sent Robert and I lots of group messages with instructions or suggestions of care plans. She was honestly a godsend and kept us focused. I had my preschool daughter, Evelyn, to think of and tried for a while to balance being a mum and a carer, taking Evelyn with me to Mum’s for my “shifts” where she slept with me in the spare room. This was really hard as both my daughter and Mum needed my attention equally and, in reality, I couldn’t manage it. Laura had to take me to one side and point out that right then, my priorities should be with mum, as my time with her was limited. Her advice to me that I needed to make sure I didn’t ever regret how I spent my time with mum seemed harsh, but in hindsight she was right and I will be forever grateful to her for being blunt and standing up to me. From that point on, I would leave Evelyn at home with her Dad during the nights I was caring for Mum, and therefore I could give her better attention.
Laura had planned to get married in 2016, but she brought the wedding forward to Saturday 21st March because she desperately wanted to have Mum there. Mum was in a wheelchair by then and her speech was very limited, her levels of confusion were high and she could get really grumpy and snappy – it was a total personality turnaround from someone who had always been so kind and gentle before her illness.
It was a challenge trying to get Mum up and out, but it was so important for Laura to share such a big day in her life with her. The day itself was a huge struggle for Mum, despite some of her close friends helping getting her to the hotel, getting her dressed in her carefully chosen Mother of the Bride outfit, complete with fascinator. But she was there and there were moments when her smile could have lit up the room. Mum was so proud to see her beautiful youngest daughter marry her sweetheart – you could see it in her eyes. When the day was over, it was as if she knew she had done her bit, she had done what her daughter needed her to and from that day on she didn’t get out of bed. She couldn’t – life exhausted her.
April was very tough, with many occasions of Mum gripping our hands and wishing for it to end and even practically begging for an end to it all. That had to be the most devastating thing for us to hear.
A couple of weeks before she passed away on 11th May, Mum declined her second course of chemotherapy (the first course hadn’t done anything for her, so it seemed pointless putting her through the ordeal all over again).
Mum had been fixed up with an automatic catheter in her leg administering end-of-life drugs and had been taken off the steroids. She had had enough and was by now begging us to help her go. The smiles now were seldom, her eyes sad and her demeanour low.
On 5th May, which was Evelyn’s third birthday, we allowed my daughter to blow out the candles on her cake in Mum’s bedroom. I think this was one of the last times Mum spoke properly, wishing Evelyn a Happy Birthday and telling her she loved her.
On Sunday night on 10th May it was my shift, but by coincidence, both Laura and Bobby came over too – fate pulled us back together. At 8pm we noticed Mum’s breathing had changed. We emailed the vicar, Rev Kate Massey, who was very new to the parish, asking if she could come round to give Mum a blessing and, amazingly, she responded almost immediately and came over to say prayers round the bed.
Later in the night, when we had one by one fallen asleep around her bedside, we became aware that her breathing was sounding very rattly. We were suddenly very conscious she might slip from us at any time. She waited, I think, until we were resting and only then did she pass away.
It had been barely four months since she was diagnosed and Mum hadn’t undergone any surgery because the tumour was inoperable. Radiotherapy we had been told wasn’t an option either because it would destroy even more of her brain as the tumour was intertwined within it.
Losing Mum has left a huge hole in all our lives and for her to die from a brain tumour was the most horrible way for her to go. She changed so much both physically and mentally. It was awful watching her deteriorate in this way. But whilst it was absolutely heart-wrenching to lose the woman I considered my best friend, I would have hated to see her continuing to suffer for any longer. I feel for anyone who has to go through the agony of a brain tumour.
As long as I live I will always raise funds for Brain Tumour Research and will be running the London Marathon this year for the charity in memory of Mum. We desperately need to find more effective treatments and ultimately a cure for this wretched disease.