THREE years ago, Clare Campbell-Cooper’s first husband, David, died just a few weeks shy of his 40th birthday. His death came after 13 years of living with a brain tumour, something that his widow has documented in her book Choosing to Float.
It all began with an unexpected seizure in the night. An MRI scan revealed a sizeable tumour (7cm by 5cm by 4cm) on Mr Campbell’s left frontal lobe. The irony was that they had met through their shared work in clinical research, in the field of oncology trials.
Was that background a help or a hindrance? “Weirdly, when it came to his diagnosis, I can’t believe how naïve we were,” she says now. “We didn’t put two and two together. I think that’s because you think that bad things don’t happen to you, especially at that age.” Mr Campbell was only 26 at the time, and to all appearances he was healthy, sporty, and fit.
Later, however, Mrs Campbell-Cooper found her knowledge to be an advantage. “It really, really helps, being able to go in and ask the right questions and understand what’s being said,” she says. “I found it just heart-warming to be in a position where [through your work] you can actually make a difference to people.”
Follow-up to the initial diagnosis showed that the tumour was a Grade 2 astrocytoma, which meant that, although it would eventually kill him, this would not be for many years. There was the option of surgery.
But then came another shock. It emerged that Mrs Campbell-Cooper was newly pregnant, after 18 months of trying to conceive. They opted for surgery, but not until their baby was born. Mr Campbell recovered well, although it was found that more treatment would be needed: radiotherapy, drug therapy, and, in due course, more surgery, as he deteriorated.
The changes were “so slow and so slight” that they were hard to detect, she says, but the long process of grief began many years before his death. “I was devastated that my husband was being taken away from me,” she writes. “Our conversations lost their spark; we no longer really laughed together, we were friends, not lovers, and I was his carer, not his companion.”
She had to balance being a full-time working mother as well as a carer. “Time after time, I literally had to keep him breathing. I had to keep him alive. That whole joy of being in a relationship changed into a task-based approach.”
AT THE heart of the struggle, however, was their shared faith. “Our faith was such a major part of being able to cope,” she says. “I can remember our vicar saying: ‘God’s got you in the palm of his hand.’ That still makes me well up now. . . I could keep David as healthy as I possibly could, and I could get him eating the right things, but somebody else had got us.
“That was the most powerful thing. We just knew we had to keep trusting, and that brought us very much closer together as a couple, and gave us the strength to carry on.”
Faith had always been part of Mr Campbell’s life. He had grown up in Northern Ireland, where he had attended church every Sunday. “His best mates were all from the church, and he was part of a marvellous church family,” Mrs Campbell-Cooper says. She, however, was a very occasional churchgoer.
“It was only when we decided to get married in church: I’m very much ‘If you’re going to do something, you do it properly.’ I didn’t want to be one of those people that just turns up for their wedding. So we used to go every Sunday, up in Leeds [where they lived], and then we used to come down to Devon [where her family lived] to have our banns read.”
Clare and David Campbell in 2020, seven months before his death
When the Campbells moved to Devon, they continued attending church every Sunday. Mrs Campbell-Cooper became the church treasurer, and then a churchwarden. “As soon as we got together, faith became a very, very important part of our lives.”
Towards the end of his life, the church gave Mr Campbell a purpose. “We live right opposite the church, and David used to have a key. He would wander over and open the church, and then wander back, and it was such a peaceful existence for him. He’d go in and he’d pray. He’d light candles, and he made sure everything was all right. It was a really important thing for him.”
She raged about the diagnosis, however. “I remember saying, ‘I just don’t understand God. Why is this happening to you? You’ve never drunk, you’ve never taken drugs, you’ve never smoked.’ . . . And David said, ‘God’s given me this tumour because he knows I can cope.’ That took the wind out of all of my sails.”
Mr Campbell was “so graceful”, but not immune from his own crises. In the book, Mrs Campbell-Cooper describes an occasion when he was in hospital and in a great deal of pain. He said that he couldn’t understand why God was letting him suffer so. She left to phone their vicar, by now a family friend. When she came back, there was a new nurse at Mr Campbell’s bedside.
“It was the weirdest thing. This was the only male nurse that ever came in. He was also called David, and he explained that he was a Christian, and sat and talked to my David about everything to do with faith. It was almost like he had an aura around him, and it was just like he had been sent to be there at that time.”
When the Vicar arrived, he anointed Mr Campbell and said prayers of healing. “And it just restored David. He never said anything like that again.”
For herself, she remembers finding solace in the village church when her husband was particularly ill. “I just knelt there, and I was just saying to God, ‘I am putting my family in your hands.’ I can almost physically feel myself handing everybody over to God. And then, 72 hours later, David was home, and we had about four years of him being really healthy. So that power of prayer was really, really important.”
As Mr Campbell died, in May 2021, she said the Lord’s Prayer over him. “I physically felt him leave his body. I felt his soul go, and I know he’s gone to a place where all his earthly cares have gone. My complete faith is that he is in that place he needs to be, and he is back to being how he was. He’s now happy and at peace, and I think that’s the most important thing.”
SHE has written the book, she says, because she hopes that it will help others in the same situation: Brain Tumour Research figures suggest that 16,000 people are diagnosed with a brain tumour annually. “I think it’s quite difficult to empathise and understand what’s happening to people in the situation that we were in. It was really important to me to get our stories, with our feelings, down on paper. It’s good to have somebody that can empathise and walk alongside with you.
David Campbell at the Giant’s Causeway in April 2006
“I wanted to say, ‘Look, this is pretty hideous, but you can find happiness, you can find peace afterwards.’ It is about being hopeful and having faith and just trying to keep your head above water while all of this is going on.”
She is highly organised, and admits to having become “almost a parody of herself”, in her project management of Mr Campbell’s illness. “I became very rigid. If something wasn’t done on time, then I used to get overly stressed about it. I think I was always going to be that person on speed. I’m slowly unpicking all of that now.”
Her account makes it clear that friends and family, including the church family, were a lifeline. The piece of advice that she would pass on to others who wonder how to support such a family is to pick up the phone. “I can remember Celia, the Vicar’s wife, messaging me after David died. I couldn’t bring myself to respond. The next minute, she was banging on the door, and I just collapsed [on her] in a heap. I did an awful lot of trying to push people away. The really good people were the people that said, ‘I’m not taking no for an answer. I’m not going to be intrusive, but I’m going to be there.’”
When her husband died, Mrs Campbell-Cooper was in training for ministry, but that is on hold for now. “I just need to sit in the back pew and just enjoy myself and be with God,” she says. “So, I don’t go to church so much, but I still have this absolute fundamental bedrock of faith. [God’s] right there, and he’s got me.”
There are the practicalities: she completed her first year of training during Covid, which meant attending courses via Zoom; she doesn’t now feel able to attend residential training because of her commitment to her son. She has also married again, which means that the goalposts have moved.
For now, her priority is George, who is 14. It was never easy to balance his needs with his father’s. He gets on well with his stepfather, Ian, a dog behaviourist. Ian, she says, is “an absolute miracle”, who understands her need to continue grieving for David.
“God is not going anywhere. If the time is right, yes, later on down the line, God will call me again,” she says. “I trust that the right thing is going to happen.”
Choosing to Float by Clare Campbell-Cooper is published by C3 Publishing at £8.99; 978-1-7385262-0-8.