Living with a Brain Tumour: Carwyn's Story
Carwyn Jones is 52-years-old and has a brain tumour. In this blog, Carwyn speaks openly and candidly about being diagnosed with the tumour and his treatment. Carwyn discusses the impact of this on him and his wife Enlli and their young son Tomos, his ongoing recovery and his hopes for the future.
“I try not to think about my meningioma too much and try to make the most of life. The reality, however, is that its always there in the background and scans and visits to the hospital will be part of my routine for the foreseeable future."
In 2010 I began experiencing the odd migraine. These migraines came after a tough mountain bike ride. They didn’t happen every time to begin with, but they gradually became more frequent. Eventually I was having a migraine every week and sometimes more frequently regardless of whether I’d been cycling or not.
Dismissed
They were classic migraines accompanied by an aura and sickness. I went to see my doctor regularly and they treated me for migraines (strong pain killers, diet changes etc.). My partner Enlli (now wife) was concerned and pressed me to ask the doctor for a scan. Her friend’s husband had had a brain tumour, and she was concerned.
My doctor dismissed my concerns saying that “I’d be dead by now if it was a brain tumour”. I remain angry with that doctor to this day. Eventually after about 9 months I demanded a scan and went to see a neurologist privately – who thought my symptoms were a result of abusing pain medication.
Good News, Bad News
As I came out of the MRI scanner a specialist put her hand on my shoulder and said, “I have some bad news and good news”. The bad news was that I had a large meningioma. The purported good news was that I was lucky that they could operate, and the meningioma was likely to be benign. I was shocked and terrified. There were tears as I broke the news to Enlli. The tumour was large, and they needed to operate quickly.
Induced Coma
2 days later I was on the ward in the Heath hospital ready for an operation. They explained that they would perform a craniotomy – take out a disk of bone from my skull to access and cut away the meningioma. When I woke up, I was disorientated and ‘drunk’ from the affects of the anaesthetic and the painkillers.
Later in the day my brain started swelling and they put me in an induced coma to manage the swelling, but eventually they had to operate again and removed the bone disk and placed it in my abdomen.
Becoming a Father
I spent a week in hospital with a comical bandage on my head with the words “no bone flap” written on it! A week later they put the bone flap back. I left hospital with the ‘not so good news’ that my tumour was grade 2. Not cancerous, but likely to regrow. I spent a year without my driver’s license. Over the next few years Enlli and I got married and we had a son called Tomos.
Unfortunately, in 2016 I had to have another operation because the tumour had started to grow back. I found it very difficult to go through the operation again as a father, but Tomos was very young and didn’t really understand. Another year without driving and time off work followed, and I slowly got back to ‘normal’ again.
Agony
Then in 2022 I had to have another operation, this time in Walton, because the tumour was back again. Tomos was older and I found it very difficult saying goodbye as I went off to the hospital. A week in Walton was tough given the draconian COVID regulations with no visitors.
I was on a ward with some very sick patients with complex neurological problems. I was in agony because of the bandage they apply to stop the swelling and didn’t sleep until they eventually took it off. Daily trips to the local hospital for radiotherapy followed.
Making the Most
I have a scan every 6 months because there is always the chance that it comes back again. It is difficult to deal with the 6-month cycle of anxiety and relief (so far). I will never forget the words of the doctor as I came out of the scan – my life changed forever. I suffer with some symptoms of brain injury (fatigue, anger, confusion), but I get great support from my family, workplace, and the North Wales Brain Injury Service.
I try not to think about my meningioma too much and try to make the most of life. The reality, however, is that its always there in the background and scans and visits to the hospital will be part of my routine for the foreseeable future. My hope is that some form of cure or treatment will arrive to take away the uncertainty – but in the meantime I try to accept that I am afraid and do the best I can.
