Living with a Cavernoma.
A few years ago, on the 22nd August 2022, at 5:15 pm to be exact, I was sitting in the garden, sipping a glass of wine and chatting to my wife. It was a glorious evening, and we were both enjoying the late Devon summer.
Suddenly, I felt a slight numbness to my left cheek and experienced ‘pins and needles’ in my left hand. I could also feel a numbness in my left cheek – classic signs of a stroke.
Three days later, after extensive scanning and blood tests in hospital, I was placed in bed. A nervous-looking consultant came in to speak to me. “Would you like a cup of tea?” she asked. I knew bad news was incoming.
The consultant delivered her diagnosis with trepidation: “You’re what we term as CUP.” “What is that?” I asked. “Cancer, unknown primary,” she continued. “We think you have brain cancer, suspected liver cancer, and an unknown primary, so it’s what we term as CUP.” I took a slurp of cold tea. “That’s okay,” I said, feeling rather more sorry for the consultant than myself at that moment. “I’ve had cancer before, and I know what it’s like.”
To be honest, I had been diagnosed with prostate cancer at the age of 49 and quickly made arrangements for it to be removed. But this was in a different league – brain cancer, liver cancer. Were they going to tell me the primary cancer was in the pancreas? If so, I needed to get my affairs in order and update my will quickly.
I returned home and delivered the news to my wife, Katie. The next few days were spent walking together, discussing the possible outcomes and our future. Both of us tried to put on a brave face, but it wasn’t easy. My youngest son and his girlfriend arrived in Devon to stay with us for a few days. I delivered the news to them while we walked along the beach, and they were very upset. I tried to reassure them that everything would be okay, but I could see they both feared the worst. All of us did.
My wife and I decided to update our wills and arrange health and finance LPAs (lasting power of attorney) for me. Friends became aware of my diagnosis and started visiting me, which was kind hearted, but I could see they also feared they may not see me again.
I’ve always been a keen runner, mostly doing 10k and half marathons. But I really enjoyed the challenge of running up hills in Devon. As I did so, I often remembered feeling a slight sensation of ‘pins and needles’ in my left hand. Could this have been a warning of what happened to me?
I immediately stopped running and carried on walking my dog, but I was feeling very tired. If I moved my head quickly, I encountered a ‘mushy’ kind of headache, rather like a hangover.
I returned to my local hospital for more MRI scans. The doctors decided to concentrate on my liver, as this would be easier to obtain a biopsy than by brain. I waited patiently on the ward until I was wheeled down to the theatre around 4:30 pm.
The surgeon and her assistant seemed tired and somewhat stressed. Clearly, it had been. very busy day.They explained that they would have to use ultrasound to find the cancer and then take a biopsy using a very long needle. They asked me if I was okay with this, and I nodded my acceptance.
The next few minutes were spent turning me repeatedly over on my side while the assistant ran the ultrasound device across my lower body. The surgeon became slightly agitated when she couldn’t find the ‘target area’. Strangely, she described the danger of the needle insertion and the likelihood of excessive bleeding. “Are you okay with this?” she asked. I nodded and they started the procedure again. After a couple of more attempts, I decided to call a halt and I suggested that they might try again on another day. They seemed somewhat relieved, but I had another plan.
Many years ago, I took my family on a ski trip. My youngest son, is an excellent skier and could effortlessly tackle a black run. I, on the other hand, preferred a more unpredicable approach, often descending the slopes like a kamikaze. That day, I decided to follow my son down a black run, which was not a wise choice.
As I started to tumble, I found relief in seeing a large wall of snow ahead. I thought it would cushion my impending crash and any potential injuries. Unfortunately, it turned out to be a large rock covered in snow. I hit it with a huge blow and was immediately winded. The impact had cracked three ribs, and I was forced to spend the rest of the ski holiday taking hot baths and sitting in cafes, waiting for the family to join me after their day on the slopes.
A few years later, I found myself at another hospital in Northamptonshire, investigating a stomach problem. During my stay, I received a scan in the area where I had hit the rock. As I was returned to the Devon ward after an aborted liver biopsy, I suddenly remembered this scan. Could it be that my diagnosed ‘liver cancer’ was simply a trauma injury caused by the skiing accident?
I contacted the Northamptonshire hospital and requested a copy of the scans to be sent to the team in Devon for evaluation. I knew this would take time, so I decided to proceed with another plan.
I’m fortunate enough to have private medical health insurance and I pay the premium myself. Due to several claims over the years, my monthly fee is quite substantial. While waiting for the Northampton scan to arrive in Devon, I decided to use my insurance and make an appointment to see a brain surgeon in London, to determine the severity and prognosis of my brain cancer.
I had more MRI scans, followed by Zoom calls, (it was the pandemic), and the hospital sent me a request for further investigation. I was then referred to another surgeon who specialised in a condition called a ‘cavernoma’. It sounded like a very exotic condition, and I was intrigued. After another set of MRI scans in London, I was told that a consultant would see me late that afternoon to review the scans.
Later that day, I entered her office, and she loaded the digital scan onto her computer and opened it on the monitor. She pointed at a dark area about the size of a raspberry on the left side of my brain and delivered the news. “I can’t be certain, but I believe it’s not brain cancer. It’s something called a brain cavernoma, and the dark area is drying blood.” Whatever this ‘cavernoma’ was, it seemed far more preferable to cancer, and I received the news with enthusiasm and a smile.
I was then referred to a specialist brain surgeon called Tim, and we chatted on Zoom over the next few months. He had reviewed several MRI scans over the past year and was now convinced that my condition had been caused by a cluster of abnormal blood vessels in the brain. The abnormality does resemble a raspberry and occasionally bleeds, causing a condition not dissimilar to a stroke. I could easily put down the phone and ‘virtually hug’ Tim. It wasn’t brain cancer, and now I needed to learn more about being a member of this select group of people with a ‘cav’.
Before learning more about cavernoma, I needed to return to Devon to check if the consultants had received my stomach scan from Northampton. They hadn’t. I made numerous calls to both hospitals, and eventually, I received the news that the scans had been received and were being reviewed.
As they were being reviewed, ‘surgeon Tim’ contacted the Devon team to relay his diagnosis of my brain condition. Finally, I received the news I had been waiting for. The Northampton stomach scan had fortunately included my liver, and a dark mark on it that had previously been diagnosed as cancerous was actually a trauma injury from my old skiing accident.
Could this mean I wasn’t ‘CUP’ and that I only had to deal with this new condition called a cavernoma? Had I been misdiagnosed by the Devon hospital? I’m not someone who likes to apportion any blame and I simply wanted to move on. Tim had provided me with details of a charity called the Cavernoma Alliance UK, so I decided to contact them. I’ve never contacted a charity before, so this would be a new experience. They gave me the name of a ‘buddy’ who would call me.
After speaking to the team at CAUK, I was immediately reassured that I could manage my condition by making lifestyle adjustments. Everyone’s cavernoma symptoms are different, but in my case, I decided to stop running and give up alcohol. Although I’m a keen walker, I now have to stop and rest when walking up a slope, and I need to go to bed earlier than usual. I also always carry a few paracetamol in my pocket to help with the headaches. Now, I’m back to my new normal, enjoying life and back at work running my photographic business.
Last year, I contacted CAUK and offered them a photoshoot at my studio to help them with their marketing. It was great to meet other people with cavernoma and listen to their stories. Some had multiple ‘cavs’, and it was truly inspiring to see their positivity and determination to live life to the full, with the help and support of CAUK.
If you’d like to find out more about this wonderful organisation, contact them. Cavernoma Alliance UK
Cavernoma Alliance UK
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1197257
Scottish Charity SC048458
