Everything had always gone well in my life.
I think, on the balance of probability, I would probably even be called lucky.
Aged 33, I had a well-paid job, house in the country, fabulous friends and family, one relatively well-behaved spaniel and, to cap it all, a sporty, good-looking husband who was six years younger than me.
David and I had moved to Devon about a year after getting married and all we needed to complete our perfect unit was a baby. We had commenced trying for a baby in the same way we did everything: with enthusiasm, enjoyment, and commitment.
However, after months of trying our carefree attitude was replaced by ovulation strips, schedules and more than my fair share of having my legs propped up against our headboard!
‘Fun’ had definitely left the building.
Eventually we concluded that we might need intervention and sought out our local GP, who was extremely supportive. She told us that quite a lot of the time, as soon as people sought help, it all seemed to happen naturally but she agreed to refer us on for further investigations.
What happened next was not part of the plan.
One night, around 2am, I woke to find David having a seizure in bed. One of those scary ones you see on the television. I watched the person I loved most in the world contorted, shaking, grey foam laced with blood where he had bitten his tongue streaking the bedclothes. Then I watched him lose control of his bladder. Despite calling out, shouting and pleading with him, I couldn’t get through to him. He couldn’t hear me. I called for help.
The paramedics were amazing and being able to abdicate all responsibility for caring for the one that you love to a highly trained specialist was something that I never grew complacent about. I thanked them from the bottom of my heart.
Waking up the next morning was a slightly surreal experience. David didn’t understand why he was on a towel and why there was blood on the bedding and the carpet. It appeared that he had no recollection of what had happened.
What followed was over three weeks of tests, scans, appointments and follow ups which led us to a final consultation one early spring day. We were told that David had a brain tumour and that it had been the cause of the seizure. David now had epilepsy.
The tumour was the size of a small orange and it was sitting in the speech and memory part of David’s brain. What do you do with that information? How on earth are you meant to process that? Later we were given options: do nothing, do nothing then have surgery, have surgery. We opted for surgery. After all, if you take as much as you can away then there is less tumour to spread. It seemed logical.
But life continued. A couple of weeks later, David was out playing golf and I was painting up a ladder listening to the radio. ‘Stand by your Man’, a song I’m not particularly fond of, was playing and I was wailing along with Tammy Wynette at the top of my voice and somehow I knew all the words…how does that happen? What part of your brain stores the words to all the songs that you knew before you were sixteen? I digress. The wailing wasn’t strange, but the crying was. I put it down to the tumour news.
The next day I woke with sore breasts. Crying? Sore breasts? Surely, in amongst all this hideousness, we hadn’t forgotten the possibility that I might be pregnant. I did a test and yes, there were clearly two blue lines. We worked out the day that we conceived. It was a week before David’s seizure. It seemed miraculous.
Our happiness knew no bounds, there was no-one that I didn’t want to tell. David urged caution but there was no waiting the obligatory twelve weeks for me – I wanted the world to know we had joyous news. I needed a reason to be happy, to smile again.
The edge was taken off the tumour and life was rosy again. We put off surgery: we wanted to wait until the baby was born, just in case.
But the start of the pregnancy didn’t run as smoothly as expected, possibly because of the level of stress hormones that had been coursing around my body. About eight weeks in, I started to bleed and I was sent to our local hospital for tests. I remember saying to the nurse: ‘I can’t lose this baby, my husband has got a brain tumour’.
My husband has got a brain tumour.
I’m pregnant and my husband has got a brain tumour.
That was the start of our journey: in the space of a month I had received the best and worst news. I learned that I could cry with bone shattering grief whilst my soul soared with happiness. I was introduced to the tightrope I would balance on for the next twelve years of my life.
Seven months later we had our only son George. Nine months later David had his first craniotomy; an operation to remove as much of the tumour as possible. Nine months and one week later we were told that David’s brain cancer was terminal.
And then I was faced a choice: to go down or to go up; to be fearful or to have faith; to drown or to float. I chose to float.
David’s brain tumour progressed to a glioblastoma, the most aggressive form of brain tumour, in July 2020 and he died in May 2021 when his son, George, was 12 years old.
Clare Campbell-Cooper’s new book Choosing to Float is out now, priced at £8.99 and available from Amazon.co.uk. Clare will be giving at least 10% of her net royalties to Brain Tumour Research.
