Hello all. I am new to this Glioblastoma Support Network so first up I would like to introduce myself.
My name is Julian Axon (Jules to my friends) and I am 66 years old, born and raised in England before moving here to Port Elizabeth, South Africa in 1975 at age 21. I worked for General Motors, South Africa for just about all my career and I travelled the world as a Purchasing Program Manager for them. Towards the end of my GM career I was given a 3 ½ year posting to GM headquarters in Detroit, Michigan.
Over the last 15 years I have received 5 cancer diagnoses including two GBM’s in my right frontal lobe.
It was during my Detroit posting that I received my first cancer diagnosis of prostate cancer and I was fortunate to be one of the early recipients, at the time, of robotic surgery to remove my prostate gland at University of Michigan oncology centre. Prostate cancer gave me quite a bumpy ride over 12 years after I had surgery, with my PSA repeatedly going up after every treatment brought it back down to undetectable again. At my ten year anniversary of surgery my PSA was 3 times higher than when I had my prostate gland removed.
2 years of Hormone Therapy sorted that out for me although living with the side effects of the Hormone Therapy was another challenge I had to overcome. But for the past three years since Hormone Therapy finished my PSA has been consistently undetectable.
I also had two malignant melanoma’s and when people say that is just having ugly moles removed from our skin I always have to remind them that people die from untreated Melanoma’s. There is a very fine line between catching them just in time and catching them just too late.
Early detection is the best protection.
Then in 2013 I was diagnosed with my first 2.5cm GBM after being taken to Emergency room and diagnosed with a stroke before my neuro surgeon got to see the MRI they had done.
I had surgery followed by SOC during the weeks and months after diagnosis.
At my first follow up MRI 12 months after first diagnosis a new GBM was discovered in the same place as the first one but twice the size. For the second time in 12 months I was told I may not see my next birthday.
But my neuro surgeon had a plan. He offered me the opportunity to have Gliadel Wafers implanted during surgery to remove that new tumour. I had never heard of Gliadel wafers but once he explained the concept to me, as a practical man, I jumped at the opportunity to get those wafers.
Instead of maybe not seeing my next birthday I am now coming up to my eighth birthday since the Wafers were implanted.
While we still see a fluid filled hole in my brain where the tumours were removed from, that hole has been reducing in size every year and my surgeon has been able to point out how my brain has improved every year. I also know, for myself, hat the brain is repairing itself because all the after effects and side effects of treatment have steadily got better over the years up to now and I believe I am now just about as fit and strong as I was before I had even heard of GBM. I still have not managed to get a decent game of golf but I know that is a challenge even for many people who have never experience brain surgery, radiation and chemotherapy.
THE IRONY OF MY NAME AND HOW IT MAKES MY BODY DO THE THINGS IT DOES
Many of you probably do not know this but I am sure some of you do know.
While I had been doing some Internet research on my illness I came across a strange irony between my surname, Axon, and the parts of my brain that makes my body do what I need it too. I found that an Axon is actually a tiny extension of a neuron coming out of the central nervous system, or brain. The Axon is actually a stem many times smaller than a human hair that extends from the millions of neurons in each and every one of our brains and out to the various muscles around our bodies that are what make us walk, talk eat, breathe or just point a finger. The Axon is a transmitter sending signals to a receptor, a Dendrite, which passes the signal on through the neuron to make our bodies perform the actions we want it to.
My surgeon and I had a joke and a laugh between us that he was operating on an Axon and it was his axons that were issuing the signals to his muscles telling them what to do.
Think about it people, I am inside all of your brains, millions of me. I hope that is not too scary a thought for you but the good part is that this Axon has never been anything but positive that I was going to defeat the curse of brain cancer that had burdened me for a number of years now. So far so good. The plan is coming together!
I wish you all well.