My name is Ben Johnson (Johnda) and this is the story of my journey so far with brain cancer. This has obviously been an incredibly emotional and eye opening journey. With two young children, and being relatively young myself (38), I had never considered having to face cancer at this point in life. I certainly never expected to be told that my cancer would be incurable and that I am unlikely to see my children grow up, finish school, get married and have their own children. We remain positive however, and I know I can beat the stats we have been given.
In the Spring of 2013 I developed a minor sinus issue that wouldn’t go away. I went to the GP and was prescribed nasal spray and antibiotics, both of which did not help. On my third visit to the GP it was decided that I needed a CT scan on my sinuses to see what was going on.
On Friday the 6th of December I went to Ringwood Hospital at 9:30am for the scan. I was not too concerned as I felt very normal and was planning to have a hit of golf that day. And then...BANG... life was never going to be the same again. The CT scan showed a tennis ball size tumour in the left frontal lobe of my brain. I was told to go to emergency at St.Vincents hospital in Fitzroy immediately.
Over the next few days I saw many dedicated and caring doctors and nurses who did their best to give me the best treatment possible. To lessen the chance of a seizure occurring, I was immediately prescribed a steroid to minimise the extensive swelling caused by the huge tumour. I had MRI scans, x-rays and many blood tests before surgery just two days after I was admitted. Monday 9th of December I had a craniotomy to remove roughly 90% of the tumour.
I was very groggy and away with the fairies until lunchtime the following day when I realised I had a huge bandage on my head covering up the 49 staples along the wound in my hairline traveling from ear to ear. Pathology results came back a very long 3 days after surgery: Grade 2&3 mixed oligoastrocytoma. Not good news at all, but also could be worse.
I spent the next few days recovering before convincing the Doctors I was right to go home on Friday. Two weeks later I had a MRI scan and the results showed that I should have a second craniotomy. They removed roughly 5% more on the 2nd of January 2014. The surgery and recovery went well and I only spent 2 nights in hospital this time. I was then able go home to enjoy some time with my wife and our children while the medical team planned the treatment to beat the remaining 5%.
Samples of the tumour were sent for testing in the Netherlands to potentially be part of a clinical trial, which I did get into. Of 4 treatments available on the clinical trial, I was randomly placed into what we call “the hamburger with the lot” - a mixture of all the other 3 treatments.
The first phase: Radiotherapy (at Ringwood Hospital) and Temozolomide (chemotherapy tablet) daily for 33 days. This treatment seemed to take ages, especially as I had to be driven everywhere as you cannot drive for several months after brain surgery.
Second phase of treatment: A much stronger dose of Temozolomide daily for 5 days, then 23 days off to let my body heal, for a total of 12 cycles (12 months). I have just completed the 2nd cycle in this phase.
Finding out my prognosis, finding out how many adults are diagnosed, how many children are diagnosed....it really is quite overwhelming when you become aware of how big this problem is.
Brain cancer touches so many lives, and yet it is the least funded cancer. It kills more people under 40 than any other cancer. These are people in their prime; people with young children, people just in the early days of planning their lives. Children, and their parents, who should never have to deal with this. People just like you. People just like me.
Quite early on after we learnt about brain cancer, my wife Erin wanted to do something positive in a situation that felt so negative. Searching for a charity to support, who were striving for answers through research, she discovered the Cure Brain Cancer Foundation. The Age Run Melbourne was coming up so she thought she’d get one of her brothers and a friend running with her to raise some money and awareness for brain cancer. And so...’Johnda’s Joggers’ was born...
I have decided to run 10km for The Age Run Melbourne. It won’t be easy at all, but I think it is so important to get out there and raise awareness (and hopefully a few dollars) for such an important cause.
Thank you everyone for your support. The last 6 months since diagnosis have been pretty tough to deal with, but it has been everyone’s support that has helped us through. Erin and I, and our children, are incredibly lucky to have you all in our lives.
Please share our story to raise awareness for Brain Cancer.
For more information on the Cure Brain Cancer Foundation go to www.curebraincancer.org.au
You can also follow us on Facebook: https://www.facebook.com/johndasjoggers