In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Plumber Nigel was buried on his 57th birthday, leaving behind his wife, Anita, and their four children. Just one year before, the couple had been celebrating Nigel apparently beating four brain tumours by renewing their wedding vows on a “holiday of a lifetime” cruise. He died 37 months after being diagnosed with several grade four glioblastoma multiforme.
“To look at the person you love and see such shock and horror in their face… it’s not something I ever want to see again… Each day was stomach-churningly horrible. I stayed with him after he died, talking to him and crying.”
Here is Nigel’s story, as told by his widow Anita…
We met playing badminton in the village. Nigel was fun and kind; we were best friends and soul mates, bringing up our four children (from previous marriages) together. Nigel and I had been married for five years when he went into hospital for a hip replacement in 2013. He seemed to recover physically but wasn’t quite right; he complained about excruciating headaches and seemed spaced out. I wondered if he was depressed, or suffering after-effects of the anaesthetic.
A few weeks passed and Nigel wasn’t improving, so the GP prescribed ibuprofen. It didn’t help. Nigel’s constant headaches were getting more severe and stopped him doing things, then a friend noticed a droop on the left side of his lip. Luckily, our GP was really on the ball. He immediately called the hospital and started talking about brain scans.
Nigel had an MRI in February 2014 at Barnstaple Hospital in Devon, close to where we live, and we got the results 24 hours later. We were amazed to be told that Nigel had three brain tumours. A locum doctor said that they were probably secondary cancers and that Nigel had a year at the most. To look at the person you love and see such shock and horror in their face… it’s not something I ever want to see again.
After Nigel was referred to the Derriford Hospital, in Plymouth, the specialist medical team took a different view to our locum GP, reassuring us that it was too soon to determine whether the tumours were secondary or establish a prognosis. Tests revealed that Nigel had three primary gliomas – aggressive brain tumours. Looking back, I was happy that they were primary as I had the idea that secondary cancers were always the worst news.
Life became all about brain tumours. Nigel tried to stay strong but we were both dumbstruck and operating on auto-pilot. He couldn’t drive or work as a plumber anymore. The children were all in shock too – his daughter Claire had a three-month-old baby at the time – and no-one knew how to be. We were all so naïve at that time. I knew the tumours were high grade but that’s about it. I had no idea that there are over 120 different types of brain tumours nor the lack of treatments available.
Nigel was quickly booked in for surgery after the neurosurgeon confirmed that without an operation, he would be dead in three months. There was no debate to be had after that. Steroids helped with Nigel’s headaches but he just looked grey. We tried to be normal, to smile and to laugh but it was so hard when cancer is hanging over you.
The night before the operation, Nigel told me what he wanted for his funeral. We were both aware that he might not make it, or that he could come out of surgery a different person. While Nigel was in theatre for eight hours, I was staring into space, still in shock I think. Our youngest child, Jamie, was about to go off to university and I remember thinking that I would be left on my own. Rattling about the house in my early forties. The surgeon promised that he would “bring back as much of Nigel as we can”, and thankfully they did. When I saw him in ICU later, he was tired but he was still Nigel.
Initially he recovered well but he went downhill rapidly, appearing extremely fidgety and agitated by day three. Tests showed a blood clot in the brain, along with a chest infection and the beginnings of sepsis. Nigel was rushed back into surgery to remove the clot. Again I was waiting, watching the clock going around, and hoping. Afterwards, he was back in ICU, sedated and surrounded by wires and beeping machines.
Two days later, he finally squeezed my hand and smiled at me. I was over the moon, but he couldn’t talk at first and didn’t seem to understand what had happened to him. Nigel drifted in and out of consciousness and experienced some psychotic episodes, thinking his friend Dave was in the next bed or that people were trying to shoot him. It was scary to see his eyes darting around, paranoid and unable to sleep during that week, just a month after the original diagnosis had shattered our world.
Nigel was moved to a stroke unit for a few days of rehabilitation before coming home. He needed physical care, like help getting up from a chair, and we adapted the house with grab bars in the bathroom. Derriford Hospital now had Nigel’s histology results so, for the first time, we knew exactly what we were dealing with. He had three grade four glioblastoma multiforme (GBM) tumours. That meant nothing to me although Google soon enlightened me about GBM’s 14-month average prognosis. I regretted looking it up and kept that information from Nigel.
The doctors had managed to remove most of the largest tumour, at the top of his brain, and around 60-70% of the two near his right ear. Nigel was now referred to a third hospital, to see the wonderfully-named oncologist Dr Bliss in Exeter. We deliberately did not ask about Nigel’s prognosis, and Dr Bliss never told us, but when the subject of hospice care came up I knew it must be terminal.
Nigel was still talking about going back to work at this point and, eventually, I had to break it to him that life was never going to go back to normal. I felt I had to be realistic. It was incredibly tough financially as I wasn’t working either, trying to access carer and disability benefits was very hard. It was difficult for Nigel to accept, as a hard-working man, that we needed help and the whole process made me miserable. I would desperately search Facebook for stories of people surviving brain tumours.
Nigel went through chemotherapy and radiotherapy during Spring 2014, also experiencing his very first seizure – which frightened the living daylights out of me. We were taking one day at a time, but by August the MRI revealed a new spot on Nigel’s brainstem. The oncologist said we have to assume it’s another tumour, which would make it Nigel’s 4th. They also spotted blood clots on Nigel’s lungs which needed blood-thinner injections for 15 months.
We kept plodding on, living with the tumours and going in for regular scans. We tried to make the most of life in 2015, taking special trips like flying to a Manchester United football match – Nigel had to take a chemotherapy tablet at half-time. We went to London to the theatre and had weekends away, seeing a lot of family and friends. For Christmas 2015 we were chosen by the disabled supporters association to meet the Man. U. players at an exclusive dinner. My cup was half-full and, although I could see that Nigel was struggling to express emotion by this stage, I knew he was relatively happy.
It wasn’t always easy to get Nigel out of the house though, his seizures knocked his confidence and he hated being pushed about in the wheelchair. Getting a mobility scooter helped him feel more independent and we also stopped the chemo for a while as it seemed to be related to his increasing seizures. That decision made me anxious, but I had to think about Nigel’s quality of life.
I kept telling him: “you’ve got to fight long enough for them to find a cure”! Nigel and I knew we were missing being proper grandparents to Xavier, Claire’s gorgeous little boy. It was too much for me trying to look after him and Nigel at the same time, and I know Nigel regretted not being able to get down on the floor and play as grandads should. It was so touching to see Xavier fall asleep on Nigel’s lap, though, and we were grateful to not be working and able to at least spend time with him. We got involved with the charity Brain Tumour Research after hearing about their Centre of Excellence in Plymouth, starting to raise money and getting local businesses involved. That gave us something else to focus on.
Nigel’s scans were still stable, with the newest spot almost gone, so we booked a two-week cruise around Norway and the Arctic Circle for March 2016. This dream holiday seemed like a perfect way to reflect on everything we had been through. We were feeling quite hopeful. Nigel and I renewed our wedding vows on the ship in the Arctic. Everyone dressed up and they really spoiled us with cake, bubbly and flowers. It was incredible.
A couple of months later, we went to the New Forest for a week but sadly that was the last good holiday we ever had. By July, Nigel’s short-term memory was hazy and he had the first of many urinary infections. He had trouble with balance, mobility and navigation, meaning that he needed to use his walking frame even in the house. I remember popping out to the corner shop, only to find him on the floor when I returned. He had no idea of time and thought he had been there hours. We realised that Nigel needed someone with him full-time now, so the family helped me out. Nigel’s eldest, Chaz, still lived in our village and was wonderful.
Looking back on photos from last year, I can see how much Nigel had changed, although it felt less obvious when we were living through it. It was a constant cycle of infections, steroids, weight gain and even cataracts. Amazingly, Nigel still had his dry, warped sense of humour and his famous belly laugh. He loved being with the four children and little Xavier; he loved watching football on TV. He was still “there”.
Nigel’s mobility got really bad by October 2016. He just wasn’t right and it turned out to be a bleed on the brain. The good news was the CT scan showed that the tumours were calcified and shrivelled, but Nigel had to stop the blood thinners as they also found more blood clots in his lungs. During his month-long stay in hospital, he became troubled and they were concerned that he had fluid in his brain and might need a “shunt” to drain it. An MRI, just three weeks after the CT, revealed the bad news. Nigel’s biggest brain tumour was suddenly back, in the same place at the top of his head. They also found more blood clots in his lungs. Each day was stomach-churningly horrible.
Nigel was sent home for palliative care. We did go to Derriford Hospital again to discuss a possible shunt, but the neuro-surgeon told us that nothing more could be done. “It’s gone too far, too fast”, he said, “it could be six weeks or six months”. We both cried tears of shock and disbelief. Back at home, we now had a hospital bed for Nigel and two carers coming four times a day to give me a chance to get out and walk the dog for a bit of normality. Those carers became my friends and my lifeline. I was responsible for Nigel‘s cocktail of thirty tablets a day, to manage everything from his seizures to pain. Nigel was bed-bound and sleeping more and more.
In late February 2017, I noticed a further change in him and had to start feeding him for the first time. Nigel developed a chest infection that got worse despite antibiotics. As March came, he was finding it hard to breathe and I could see he was frightened. The GP diagnosed bronchial pneumonia and that was it really; the doctor warned us that Nigel would only last another few days at most. It was very quick at the end, just 28 hours later he was gone, with his family around him. As Nigel’s breathing changed in his last minutes, I turned down the lights, got into bed with him and held his hands, as I had promised him I would. Knowing the end was near meant that people had been in and out all day saying their goodbyes to him, now it was just us. I stayed with him after he died, talking to him and crying.
It had been 37 months since Nigel was diagnosed with GBM, incredibly out-living the terrible prognosis of 14 months on average that I had found online. He had put up a really good fight against his four aggressive brain tumours, but we were helpless really with no cure available.
Nigel was born and died in Bradworthy, north Devon, and within five miles of us I knew five people with brain tumours. Only one is still living. I don’t want to hear about any more people being diagnosed with this devastating disease! It does help to work with a charity like Brain Tumour Research to raise money and awareness, it gives me a bit of a purpose, but it is all still very raw. I’m trying my hardest to remember the old Nigel, before the cancer hit us, and also the old Anita. I lost myself in three years of caring for Nigel and going through hell watching him suffer. Now I have to look ahead and plan things, especially with the children, like going on holiday with Jamie or to a concert with Chantelle. Chaz has taken on Nigel’s plumbing business, which is fantastic, and it’s lovely seeing Claire and Xavier. Our common ground will always be Nigel, he unites us.
I don’t have any regrets. I will always be glad to have met that funny, caring man on the village badminton court.
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.
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.