Glioblastoma (Brain) Cancer

Jamie's Story

My plan was 36 weeks of chemo. It's fairly harsh, but I did change my diet, and I had one sick day. I worked through the whole thing, I even returned to work the first day I started chemo.

But not by choice, really. Because chemo is extremely expensive. I ended up paying for it - in the neighbourhood of $30,000 plus.

I don't know if people are aware, but if your chemo happens in the hospital, it's covered. So part of my treatment was in the North Bay hospital. The chemo ward, and hospital in general, was phenomenal - great people, great staff. Never had a bad experience there.

But anything you do at home, like pill-form, and for me, there's no coverage. Unless you work for someone who has a health plan, it's not covered under OHIP.

I had absolutely no idea I was going to have to pay for this. There's really nothing for people who don't have an insurance plan.

I did get Trillium, but Trillium took about five months to kick in. So even with Trillium, I'm broke. I did try to do a consumer proposal, but the payments they wanted for it was just too much. If I miss one, I lose everything, right?

When I went to Sudbury with my wife, they didn't know how I was going to be able to afford this. But what choice do I have?

(Question: and what would have been the consequences, if you wouldn't have been able to pay for any of this?)

Death. Or I would have just self medicated and lived with it.

I'm 41 years old. I'm six years away from being mortgage-free. And I'm on the verge of losing absolutely everything.

For two months, I did have medical EI, but you're only allowed to be sick on medical unemployment for six weeks. I was told to get a pension, but the pension wouldn't even cover my mortgage. So I lived off of my line of credits, re-mortgaging, and credit cards to pay my bills. I don't know if you've ever been on unemployment, but it's not a lot of money.

I'm at that point where, I don't know what I'm gonna do, and I don't really care what happens. I'm here, and that's all what matters. If they want my house, they can have it.

At first they thought it was a less severe cancer, so everything was supposed to go well. My surgeon and the surgical team in Sudbury did a fantastic job. My doctor said they got between 90%-99% of the tumour, but it's a tumour that is not a mass per se, it's more of a jelly. So far there has been no change in anything - so there's nothing to say the mass is there, and there's nothing to say that... the mass isn't there. Without dye, it's not very visible.

I'm a construction worker and I work in Heights, so the year of chemo I stayed on the ground. I instantly started taking high doses of vitamin D because I had to stay out of the sun. I still have seizures. My leg shuts off - the tumour was located at the control centre of the lower right half of my body - so I still don't feel my toes very well.

I never laid down. After the surgery, I had to learn to walk again. My lower half didn't work. Some people get in the 'oh woe is me' perspective, but how many people get to say they learned how to walk again? I got to be a baby again. I had to learn to look at my toes and make my toes work.

It took me four months to learn to walk again; I started on a walker, with absolutely no control of my right leg, none. Almost to the point where I had to physically lift my right leg and bring it down. I had to exercises sitting down, and everything my physiotherapist told me to do, I did four times the amount. Then I started using a cane; I went to work with a cane in a supervisor role. And I just kept going.

For 24/7 I could not be left alone, at all. More to do with the surgery than the cancer. My sister from Alberta came and stayed for two and a half weeks, gave my wife a break, so my wife could actually breathe.

But it got to the point where my wife turned into a parent for a while. And it took a long time for her and me to be, you know, be normal again. Because you're in protected-mode, right? Everything worked out very well, but I think it was harder on my wife and family than it was on me.

I've been blessed to have an extremely active lifestyle. I've done more things in my life than many hundreds of people have done altogether - jumped out of airplanes, professional motor cross, a sponsored rider, a professional shooter, I'm a firearms instructor - I'm all over the place. I'm never not moving. I'm constantly going.

My oncologist said, 'this isn't good, nobody beats this.'

Well, ...someone has to be the first.

Right after surgery, my surgeon noticed that I have an obvious deficiency in my right leg, and he said it might be permanent.

Then cut it off. Give me a fake leg. If I'm not gonna feel it, take it. I don't need it.

His response? "Right attitude."

Everything has been about attitude.

I've got three silver linings; first, you're gonna find out who is not your friend. I have an ex-friend of mine, and I don't ever wanna see him again. Just completely - whether he didn't know how to handle it - he just completely shut down and left.

And then I had people that came out of the woodwork, people who were not close to me, but who did absolutely everything - helped, helped, helped.

I found out a lot about my family, family that I don't really care about anymore. The sister who I thought was going to be there the most, helped the least. And the sister that I didn't think was going to be able to help, because she lives in Alberta, was the most supportive.

And that leads to my second silver lining; you will realize that there are lot of people who do care. There's a lot of people who you can talk to.

My third silver lining, I had two 'Debbie-Downer' moments - my strong Irish strength actually broke twice:

Once right after surgery. I was in the intensive care unit. I was paralyzed, I had 12 seizures in one day, and it was expected because of the swelling and surgery.

I thought, 'I don't deserve this, this sucks.'

I don't smoke, I don't drink, I'm an athlete, I work... I do everything right.

But while thinking this, at the exact same time, the orange helicopter flew in and landed. I saw a stretcher, and an ambulance tech working on this person as they were all going into the hospital.

I said to myself, 'you know what? Shut up. You could be that person. That person is having a worse day than you.'

The second time, I was on an exercise bike that I had just purchased. I started using it before returning to work, to get my leg moving again. I was struggling; my foot kept falling off with the strap, and I had a seizure while riding the bike.

Again, I'm thinking, 'aw, this sucks. I don't deserve this!'

At the exact same time, an ambulance goes by my house, full rip, lights going. And again, I told myself, 'shut up. You can be in an ambulance right now.'

No matter how bad it is, it could be worse.