‘When we needed help most, we felt adrift in a very frightening place.’
My name is Rory. My amazing father Don was 57 when he died, six weeks after my wedding day.
Dad had been recording symptoms for three and a half years before he passed away. A year before the wedding, he’d gone to see his GP to discuss the problems he had been having. At the time, his symptoms were attributed to ‘stress’ from his job. There was no referral for any further investigation.
Just after his birthday, Dad was rushed to hospital with what was suspected as encephalitis – a severe inflammation of the brain. He quickly fell into a coma. After a tortuous 12 hours of waiting and worrying, he managed to pull through.
A brain scan conducted at the hospital reported nothing suspicious, so he was discharged. It didn’t take long for his symptoms to return, and for three more months my father struggled on. Despite how unwell he was feeling, Dad was there at my wedding, alongside my brother and my mother Helen.
It was only a week afterwards that he was back in hospital, where further scans clearly showed that had an aggressive glioblastoma multiforme (GBM). It had spread from a single point that had been missed on his earlier scan.
Following the diagnosis, we were left to our own devices. There was no formal offer of treatment; no constructive support. When we needed help most, we felt adrift in a very frightening place. After four weeks, we did finally receive some nursing input, though there was little that could be done by then.
Dad started taking blood thinning drugs, to treat a Deep Vein Thrombosis caused by partial paralysis on the left side of his body. This most likely expedited the bleeding from his tumour, causing him to fall into a coma. This time he did not pull through, and he passed away.
Given how he had struggled, in some ways the speed with which he deteriorated and died was a tragic blessing. The highly aggressive form of cancer my father had is currently incurable. More research needs to be done into the causes of such untreatable cancer, in addition to increasing access to personalised treatments and adaptive clinical trials which can help to extend lives.
ACT for Cancer’s work is incredibly vital. There is so much work that needs to be done, and it can only be achieved if we all speak as one. By donating to ACT, you can help build a world where my Dad’s story needn’t be anyone else’s. A world where people with untreatable cancer can do more than try to survive, but actually live with hope.