Sean Connor at his home in Kelowna.

(JOHN MCDONALD / iNFOnews.ca)

KELOWNA - They say time flies when you’re having fun. The same is apparently true when you’re fighting for your life because of a brain tumour.

“It just seems like yesterday,” Sean Connor says of the four years that have passed since he was diagnosed with chordoma, a rare form of bone cancer that can appear anywhere along the spine.

Connor was driving to work one summer day, sitting at a stoplight, when his vision suddenly doubled in front of him, the first noticable sign of the disease that would irrevocably change his life.

“I pulled over and called my wife. I knew something was seriously wrong, I just didn’t know how serious at that point."

As a sign of how doctors viewed his condition, Connor was on the operating table within two weeks in hopes of cutting back the tumour, which in his case, lies in the delicate area where the spinal column meets the brain at the base of his skull.

Since then, he has undergone another brain surgery, proton radiation and extensive drug therapy, not to mention thyroid surgery, numerous MRI and CT scans of his brain. He recently dealt with a serious bone infection at the top of his spine as well.

His career as a photojournalist was over, as was the life he had expected to live into old age with his wife Sandra and son David.

“She is the reason I’m alive. Without her, I wouldn’t have been able to make it this far. She keeps me on track with medical appointments and asks the questions that need to be asked. There’s some days I’m lying in bed, sick as a dog, and she’s the one forcing liquids into me and doing all the things that need to be done."

He also discovered things about his friends he didn’t expect, including the difficulty some have even talking about his condition. Connor has been very open about his health, posting regular updates on Facebook, but that has been hard for some friends.

“Some people step up, others have disappeared. I had one friend who said he didn’t know what to say to me anymore and that it bothered him so much, he stopped seeing me. Some have been through this whole thing with me and they don’t seem to mind, they just want to find out the latest.”

After suffering through numerous medical indignities, Connor also found out things about himself.

“I’m a fighter and I won’t ever give up, not until the bitter end,” he adds.

Still, there are dark days, as he puts it, and days when the side effects of his condition — the tumour has affected his speech, vision and ruined his short term memory — leave him frustrated and angry.

“The disease takes away a lot of who you are, your life as you knew it and many of the thing you used to enjoy. I just get tired of being sick.”

Still, Connor is grateful he’s still drawing breath when friends and relatives he expected might one day be at his funeral, have instead since died themselves of cancer or other diseases.

“I didn’t think I would outlive any of them but it shows life goes on and so does death,” he says. “It shows me I’m not alone and other people are having the same problems.”

Advances in chordoma treatment have also given him hope that he might actually live past the five years he was initially told he could expect.

During his last surgery, as part of a research trial, doctors took a sample of his tumour and performed DNA sequencing on it, allowing them to customize his drug regimen — he’s on five different medications — and opening up other options for treatment.

“Instead of the shotgun approach, they can now target my particular type of tumour,” Connor says. “They are saying there is now things they can try that might possibly put me into remission.”

Chordoma is known as an orphan disease, so rare that little or no research is done into the causes or possible cures.

“If the drug manufacturers don’t see a profit in it, they usually don’t bother with it. So the only chance for an orphan disease like mine is new science,” Connor says.

He’s also a regular on the Chordoma Foundation website, where he has linked up with others suffering from the same condition.

“I want to talk to as many people as possible about this because somewhere out there is the answer to this and maybe they have it.”

Until then, Connor urges everyone to hold their loved ones a little tighter during October, which is Brain Tumour Awareness month.

“Life turns on a dime and there’s no telling what could happen or where you could be in six months."

To contact the reporter for this story, email John McDonald at jmcdonald@infonews.ca or call 250-808-0143. To contact the editor, email mjones@infonews.ca or call 250-718-2724

News from © iNFOnews, 2015