March is Brain Cancer Awareness Month. We want to take this opportunity to highlight our Glioblastoma Multiforme Brain Tumour forum and Brain cancer forum. These are safe spaces for people affected by brain cancer, to find emotional support, discuss treatment and share experiences
In this blog, we hear from Chris (Branoc), who joined the Online Community shortly after his wife was diagnosed with an aggressive brain tumour. He later became a Community Champion, supporting other members affected by brain cancer for 2 years. Here, he shares some of his story and explains why he believes peer-to-peer support is so important for those affected by cancer.
My wife was diagnosed with a glioblastoma (an aggressive brain tumour) in June 2022. I immediately wanted to find out everything I could about this disease and what to expect when we met with her oncologist.
As well as the clinical literature, I wanted to find real stories about people who had lived with a glioblastoma or who had cared for someone suffering from one.
I won’t pretend that what I found didn’t scare me. Glioblastomas have a particularly high mortality rate and there is sadly no known cure. But in my searching I found the Macmillan glioblastoma forum. There I read stories of people who were going through or had been through exactly where we were then.
In a way it doesn’t seem possible that anyone else can experience the sadness and the trauma that seeing a loved one fighting an unbeatable enemy can bring. But in the forum I saw that I wasn’t alone and sadly others did understand only too well what we were going through.
As time went by, we went through all the stages that make up the terminal cancer journey; worrying symptoms, new meds, meetings with oncologists, handover to palliative care, etc. With this experience I then felt able to support others in the forum and developed a real sense of empathy with the others in the group. This in turn led me to being asked to be a Community Champion in the glioblastoma forum. This doesn’t mean I need to be an expert on this type of cancer, but simply to welcome others who are new to the group and help signpost them to the services that Macmillan offers.
As my wife’s condition started to deteriorate in late 2023, I became more and more active in the group as I was keen to understand how others had navigated this most difficult part of the journey.
When my wife died in February 2024, though it may seem strange, I logged into that forum later that very day and let the group know my wife had reached the end of her journey. As much as friends and families were supportive, I knew that the people in that forum were the only people I knew who would truly be able to empathise with what I was going through at that moment.
I would really hope that as many people as possible in my situation find the Macmillan forums and get the benefit of peer-to-peer support that I received and hopefully provided. You may not always be able to get practical support but you will always feel less alone.
If you have been affected by brain cancer, support is available in our Online Community forums. These are safe spaces to find emotional support, discuss treatment and share experiences:
Additionally, the main Macmillan website offers valuable information:
You may also want to read, Dating after a brain tumour diagnosis, where Mason talks about dating after his cancer diagnosis
