In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Electrician Peter Campbell, a father and grandfather from Greenford in West London, was diagnosed with a glioblastoma multiforme (GBM) in October 2019 after he started slurring his words and had difficulty talking. He underwent surgery followed by radiotherapy and chemotherapy but died in March 2021 at the age of 63.
Here is Peter’s story, as told by his wife Jude…
I met Peter at the Notting Hill Carnival in 1994. He was a big bundle of love, always smiling, laughing, being silly, and so funny. He was gentle, kind and sensitive, easy-going, never a worrier and such good company. Peter was my best friend and we spoke to each other several times a day. He was very sociable and friendly and people were drawn to him. He had the most amazing energy and lots of friends. He was handsome and a snazzy dresser; he loved clothes and shoes and always looked good. He was also very intelligent and into technology in a big way. He always had the latest mobile phone and other gadgets and what he didn’t know about tech was probably not worth knowing. He was cultured, loved London and knew the best places to go. We used to enjoy London like tourists. He also loved a beer and drinking with ‘the boys’ but he could be opinionated and annoying, too! He was very loud and would talk over people; his volume needed turning down two or three notches!
Peter loved the countryside. We used to go for weekends away in the Cotswolds and we got married there and had our honeymoon in the Scottish Highlands. We discovered rambling together and did it a lot. He was a fantastic husband and treated me like a queen. He was never afraid to show me how much he loved me and would tell me he did in front of anyone. He made me so happy and was a fantastic stepdad and grandad. Peter’s grandson, Joseph, and Joseph’s mum, Lulu, adored him, as did my son Lloyd, who calls him his ‘bonus dad’.
“He also had a very special bond with his mum; she called him her diamond and he truly was a diamond.”
The year 2019 started so well with so many lovely things happening. Peter and I had celebrated 25 years together and I had won tickets to the Bee Garden Party at Clarence House, which was the first time I’d ever won anything. It rained all day but we had the best time and planned to build a beehive. Work was great for us both, Lloyd was doing well and Joseph was thriving. It felt as though everything was falling into place.
“We had a normal, often chaotic, busy life; when I think back now I believe the universe could have been allowing Peter one last blast in the physical realm before he journeyed on into the spirit world.”
“Peter didn’t have headaches or experience any seizures that we know of, though in hindsight there may have been other signs we missed, over a matter of months.”
He’d started to complain that his eye sight had deteriorated so went for a sight test, which was due anyway. He later said the optician had suggested he saw his GP but Pete was vague about why and brushed it aside. He'd always had a tummy on him, which I used to tease him about saying he spent so much time in the gym yet still couldn’t get rid of the belly! He looked like he’d lost a bit of belly weight and couldn’t sit down without falling asleep, but I had put that down to him working so hard.
“Alarm bells really rang for me when we were out at a restaurant one evening.”
Every time Peter took a mouthful of food, some of it trickled down the right-hand side of his mouth and I had to keep telling him to wipe his mouth. He said he couldn’t feel it happening and admitted the guys at work had been telling him the same thing. I was very worried, especially as I could see that side of his mouth looked numb, as if Peter had been given aesthetic by a dentist. I asked him a few questions about how he was feeling and he didn’t report anything out of the ordinary, but I was still worried and told him he should go to the GP, as suggested by the optician, and that I would make an appointment. Peter said he would go but we were due to visit family in Somerset so he wanted to leave it until we got back more than a week later.
“Four days after we’d been out for dinner, I noticed that Peter’s speech was slurred, as if he was tipsy, but he hadn’t been drinking.”
I insisted on making an appointment with the GP and he said he would do it but then the next day he rang me from work saying he couldn’t talk and was struggling to get his words out so I told him to come straight home. I drove us to Northwick Park Hospital, in Harrow, where they have a specialist stroke unit because I was convinced Peter had had a small stroke. His blood pressure was fine, so that didn’t make sense but I couldn’t think of anything else that could be causing his symptoms.
It was 31 October 2019, a day I will never forget. Peter loved Halloween. He would dress up in a zombie mask and ask the children who knocked for a ‘trick’. This Halloween, though, we were in A&E for hours and Peter was beside himself with frustration. We saw four different doctors, who were clearly puzzled but one picked up on the subtle numb look of Peter’s mouth and suspected Bell’s Palsy. Peter was angry with me because he felt I was setting him up for hospital admission but looking back he was probably very worried. By the time we saw the last consultant it was very late, probably close to midnight.
“He ordered a CT scan and that’s when the mass on the left-hand side of Peter’s brain was discovered – hearing that turned my blood cold.”
The tumour had swelling around it, which was what had been causing Pete’s symptoms. The doctors couldn’t say whether or not it was high-grade but were surprised he hadn’t had headaches or seizures. Pete was admitted and started on anti-seizure medication, and steroids to reduce the swelling.
“I did my best to remain positive, holding onto the idea that it was low-grade and treatable and Pete would be ok.”
The next day a doctor came to see us. He explained that Charing Cross Hospital, which specialises in brain tumours, had seen Pete’s CT scan and ordered an MRI. He was lovely, very gentle and sensitive and tried to prepare us for the worst. Peter was calm and restful. The steroids helped with his speech and he had an MRI scan a few days later. We were then offered an appointment to discuss the results; it was a horrendous appointment. There seemed to be quite a few people in the room, a nurse and multiple doctors and students; it was really tense. The doctor showed us the scan, explained what it meant and what the tumour was called, a glioblastoma multiforme (GBM).
“We were told a GBM was the most common form of primary malignant brain tumour in adults and in that split second I thought ‘ok, most common must mean easily treated’, but no!”
Peter was asked if he wanted to know his prognosis and then in a very blasé way the doctor told him he had about 15 months. I just couldn’t believe the delivery of that news. Neither of us could believe what we were hearing and were in total shock. The nurse picked up on this and said it was very difficult to put a timeline on and that no one knew for sure because it can vary from person to person. I grabbed that and held onto it. I decided they could be wrong. Treatment was discussed and we were given the opportunity to take some time to think about it, but I encouraged Peter to agree to the surgery to debulk the tumour there and then; I wanted it gone.
Peter was discharged from Northwick Park that day and we came home, where he kept himself busy doing the gardening and other things around the house. I continued working from home, which I did throughout. It was a terrible time. I was so worried but tried not to be. We didn’t talk about the prognosis; neither of us wanted to. Peter didn’t want to talk about dying and we never did. I couldn’t bear the thought of losing him. We both started to attend Maggie’s, a charity in Charing Cross, and that was a lifesaver for us both. Peter went each day and loved it there. He didn’t think he would find its brain tumour support group helpful but he did, we both did. He also attended the men’s group, the exercise group and its drop in, whilst continuing to go to his gym.
Work defined Peter. He was a very proud electrician, a ‘spark’ as he called himself and a contractor, well known in his field. He and a couple of friends always worked together. It was hard but he loved working on building sites, amongst the guys and the banter, and he was very popular. They’d all go for a drink on a Friday after work and that was important to Peter but it all stopped with his diagnosis; he just couldn’t get his head around the fact he couldn’t go back to work.
At Pete’s hospital appointments, his desire to return to work became a bit of a joke with the nurse; that wasn’t something people tended to ask about! The steroids helped and his speech was better but he started to experience pins and needles down his right-hand side. His sleep was affected as well. He couldn’t sleep at night and he found this really depressing. He also lost his spark. He was very down at times and we were both short-tempered.
“Neither of us could make sense of what was happening and at times we broke down together.”
On 30 November 2019, Peter had the surgery to debulk his tumour as planned. He had also been part of a clinical study, which meant he had more detailed MRI scans, which were helpful for the surgery. The operation affected his speech, though, by jumbling his words, something called dysphasia. We were told things would settle back to normal after a few days but that never happened.
“Peter thought we were winding him up, pretending that we couldn’t understand what he was saying and I had to keep telling him we would never do that.”
When he was discharged from hospital he had speech therapy. His therapist was lovely and patient and he liked her a lot. She was encouraging and gave him hope but his speech never really recovered. I remember us coming back from my sister’s in Manchester a couple of months after his surgery and there were some guys on the train coming back from a football match, talking loudly about it. Under normal circumstances Peter would have joined in with the chatter and ended up being the centre of it but he knew he wouldn’t be understood so he just watched and listened silently, which absolutely broke my heart.
Following his surgery, Peter had radiotherapy every day for six weeks and found his first session very difficult because of having to put on that mask. I was called into the room because he was insisting the mask, which he had been fitted for, was too tight but the radiotherapist was saying it wasn’t. I think he was just really frightened. It was such a daunting thing. I was able to help him feel calmer an after that, although he obviously didn’t like it, he didn’t complain.
“When he finished his treatment, the team gave him a round of applause!”
He had chemotherapy, which we had expected him to be on longer but was stopped in March 2020 because of the pandemic. That hospital appointment was really brutal. The consultant said to Pete: ‘we’re stopping your chemotherapy as it reduces your immunity and if you catch COVID and end up in hospital, you won’t be given a ventilator and won’t be resuscitated if your heart stops. He said: ‘go home, look after yourself as best as you can, stay away from crowds, but go out and exercise.’ I was grateful for the honesty but I cried and cried; I didn’t want to but I couldn’t help myself as Peter held me in his arms. That very evening, 23 March 2020, Boris Johnson announced the UK’s first lockdown.
“People assume things must have been difficult during the lockdown but the restrictions were a blessing for us.”
Peter hated not being able to go to work or to the pub with his mates but lockdown meant that nobody could, so we were able to remind him of that. Lloyd would normally have travelled abroad for work and though he would have insisted on staying at home with us, Peter and I would have insisted he continued working; the restrictions meant there was no choice. Pete also started not wanting to see or talk to anyone on the phone, largely because he found the dysphasia so difficult. It was frustrating for him and hard work trying to make himself understood. When restrictions allowed, Peter and I went out for a walk in the park and to the pub. He saw his close friends and family and Lloyd took him to the barbers and for manicures and pedicures. He loved seeing Joseph and Lulu who visited often. Lloyd would also take him to see his mum who he absolutely adored and continued to see throughout, along with my dad.
"Over time he began to drag his right foot and to experience nerve pain down his right-hand side."
He was having physiotherapy due to his mobility issues and in June 2020 started chemo again. An MRI scan the following month showed his tumour was stable but he was steadily deteriorating. I really noticed it in his motor skills and his mobility on a trip we took to celebrate our 26th wedding anniversary. We weren’t able to do the walks we normally would have and Pete started struggling to use cutlery, as well as his mobile phone and the gadgets he usually loved tinkering with. He was clumsy and kept knocking things over. It was so hard to see my beautiful husband deteriorating but I’m so grateful for the time we had away in the Cotswolds. As difficult as it was for him, we still had a good time together.
In September 2020, we went to the coast for a week; by then Pete’s mobility and motor skills had worsened and it was a bittersweet holiday. We were in the South Downs and I felt so sad. As the days went by I could see the changes in him.
“He was becoming a different person, no longer quick-witted and sharp nor his usual happy-go-lucky self.”
We met a wonderful woman called Simone who I am still in contact with. I will never forget her kindness, the time she spent chatting with Peter, deciphering what he was saying. He loved her. I had a drink with her outside the lovely cottages we were staying in one evening whilst Peter watched a movie inside and she made me face up to the fact that he was dying. Her husband had died a couple of years before.
“I cried so much as we talked and knew it was going to be mine and Pete’s last holiday together.”
When we got home, I decided it was time to face reality. I hadn’t wanted to look into GBM and when I had tried before the word ‘devastating’ jumped out at me and I just couldn’t look any further. This time I called the Macmillan clinical nurse specialist, who was wonderful, patient, kind and sensitive. He explained everything about Peter’s tumour, which was difficult but necessary to hear. We knew his tumour was terminal and all the treatment was doing was giving him more time, although we didn’t really ever talk about it.
“Soon after that Peter had an MRI which showed his tumour was unstable.”
He was started on a different chemotherapy drug. He had tolerated Temolozomide well but it had affected his appetite whereas Lomustine made him feel so ill. He didn’t complain but I could tell and I just didn’t see the point in him continuing with it. At his next appointment two months later, his doctor agreed that he should stop the chemo. By then Peter couldn’t make that decision for himself, but I know he would have agreed. I was relieved.
“After that it was just a case of trying to keep Peter as well as we could by spending time with him and making sure he was eating and drinking, but his health steadily declined.”
He would think he was losing his balance whilst sitting in a chair at the dinner table and we would strap him into a wheelchair that we had started to use to go out, so that he could feel safe at the table and eat with us, but he became a shadow of himself. His balance would go and he would fall over. He’d panic about not getting to the toilet or commode in time and on two occasions he had seizures, which was just horrible to see.
“His personality changed and, though he still had his loving nature and would kiss me and hug Lloyd and Joseph, he became agitated and angry at times.”
He would shout at me and the carers and would call out to me throughout the day. He would grab our hand and hold it vice like, not letting go. He even started to call me Mum. He hit and scratched me a couple of times and kicked Lloyd. We knew this was because of the tumour and had been warned about it but it was still very hard. Peter was anxious about being incontinent and would get up throughout the night to use the toilet or urine bottle but was at risk of falling so I had to get up with him. When he turned during the night he would hit and kick me, not realising that he had.
“We were so very lucky to be able to care for Peter at home.”
Eventually, he was no longer able to get upstairs, even with the stair lift, which he hated anyway. It was so upsetting but we had the most amazing palliative care team from Meadow House Hospice in Southall, West London, which ensured we had everything we needed to care for him at home. Our front room looked like a hospital room, with a hospital bed, recliner chair that Peter loved, a hoist, a commode and a wheelchair. He had the most wonderful carers, young men who helped us care for him. Four times a day, and with tender loving care, they washed him, dressed him and fed him as if he was their own father. I’m eternally grateful to them and will never forget them or our amazing palliative care team.
Eventually Peter’s agitation and aggressive disappeared and he began to spend much of the day sleeping. He liked listening to music and would hold our hands and kiss us. He was cognitively impaired and his speech had really deteriorated so it was very difficult to understand him but he liked having visits from family and very close friends, although he would often become emotional and start crying. Peter would call out throughout the night, for reassurance, or to use the commode – Lloyd and I were frequently up in the early hours of the morning when Peter felt he needed to go.
“I bought a baby monitor so that I could sleep upstairs, but I didn’t want to leave him so the sofa next to him became my bed.”
Images still come back to me about how he was in the end and it hurts. The year 2021 was awful. My mother-in-law, who Pete had a real bond with, died in January and then my dad, who he was very close to, died in February. When Lloyd and I tried to tell Pete about his mum, he couldn’t understand exactly what we were saying but he knew something was wrong and cried and asked for her. He seemed to really start to let go of life after that. He stopped talking, was very peaceful and mostly slept during the day. He wasn’t able to focus his eyes or respond to us and by the time my dad died, he wasn’t able to cognitively understand it, which was very hard for me. Then one day after he’d had breakfast, I was sitting holding his hand and he took my hand and tried to move it to his mouth. He looked straight into my eyes with such love and when I helped him move my hand to his mouth, he kissed it.
“It was as if he was saying goodbye and that meant the world to me.”
I had started to go out for a walk for 20 minutes in the morning before the carers came. On the day Peter died, 9 March 2021, I had just returned and, as usual, kissed and hugged him when he started to take his final breaths.
“I called Lloyd and we both held him in our arms as he passed away.”
I am eternally grateful to Peter that he waited for me to be with him as he passed. I had been prepared to wake one morning to find that he had gone and the night before was the first night he hadn’t woken me up for ages. I love him with all my heart and feel that he is still with me. We will always be together; he is my soul mate, the love of my life. He made me happier than I ever could have known and showed me what love is. I feel honoured and blessed to have spent 26 years with him and to have been able to care for him at the end of his life. Through Peter I also have Lulu and my beautiful grandson.
“There is so much love around me and that is helping to get me through my grief.”
“I have cried every day since Peter’s diagnosis.”
Peter was devastated to be diagnosed with a brain tumour and would ask ‘why me?’ He had been so fit, healthy and full of life, never ill apart from the odd cold. He went from never even taking a paracetamol to having chemotherapy and radiotherapy. His dad also died from a brain tumour. We don’t know whether it was GBM as it was many years ago, when Peter was just seven years old and his dad 46, an age Peter was relieved to reach and pass. The doctors told us there was no rhyme or reason for it. I have since learnt that brain tumours are indiscriminate, that they are on the increase and are the biggest cause of cancer death in children, yet just 1% of the money for cancer research is allocated to the disease; that is shocking.
Peter and I loved walking and we especially loved the Scottish Highlands. I couldn’t imagine ever going there again without him but I saw a challenge advertised, the 96-mile West Highland Way trek, and am now training to do it. The trek takes place over seven days and I’m going to use it as a way of raising money for Brain Tumour Research. I want to raise at least enough to fund a day of research at one of the charity’s Centres of Excellence.
I miss Peter with all my heart. My relief at him passing and not having to worry about him anymore soon turned to raw grief. Now I’m bereft but preparing for the trek, along with having counselling, is helping me to work through my grief. I have learnt to swim, using it as part of my exercise plan and I love being out in nature, where I know Peter is with me. Whenever he used to see a robin in our garden, he would say it was his dad. Whenever I’m on a walk and I see a robin, I know Peter is guiding me. I talk to him and feel him with me. The West Highland Way will be a tough challenge but Peter is spurring me on and I have had so much support and encouragement that I know I will keep going.
“I want to contribute to Brain Tumour Research in Peter’s memory.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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.
Brain Tumour Research is determined to change this.