I was diagnosed with medulloblastoma in March 2002, after a year of believing I was suffering from caffeine withdrawal, and 5 months of knowing that something was wrong but not quite sure what it was.
I underwent brain surgery 3 times in less than a month - I had a third ventriculostomy in February because by the time I got to see a doctor that actually knew what he was doing I had hydrocephalus. From the scans it looked like the tumor would be very difficult to remove so they decided to do a biopsy in March. When they opened me up, they saw it wasn't so difficult, but they hadn't got me to sign consent so the had to do a resection a couple of days later.
They said it was a 100% macroscopic resection, so basically everything they could see but there could be cells left that they couldn't see. Medulloblastomas tend to shed cells. My spine MRI and lumbar puncture came back clean, so everything put me in the average risk category - 80% 5 year survival rate, 40% 10 year survival rate. They explained that I would need to have cranio-spinal radiation to prevent the tumor from returning, and in April I went to see an oncologist about the treatment. He explained the side effects, and my first reaction was forget it. He told me that radiation was the only option, without it my chances of survival were very low - his guess was about 10% at 5 years.
The brain damage was what scared me most, mostly because they couldn't tell me how bad it would be. The social worker was so helpful - she told me that she had worked for a while in a home for mentally retarded people and they were very happy doing their OT project. Thanks, but that's not the life I want. What surprised me is how much the thought of hair loss bothered me. I'm not someone who cares too much about what I look like - I dress for comfort and hardly ever remember to put on makeup, but the thought of loosing my hair and it never growing back really freaked me out. It would be like being marked forever. I would either have to wear a wig (and even the thought made my head itch) or stand out as a cancer patient forever.
So I really didn't want to do radiation but my friends and family talked me around and I agreed to it, because after all it might not affect me that badly. I started radiation in May. Four hours after the treatment I started projectile vomiting which didn't stop for 14 hours. The scary thing was that I was only in that machine for a couple of minutes and had such a violent reaction. The next day was a public holiday so I just stayed in bed recovering. I went again on the Thursday, this time it only took 2 hours for the vomiting to start and lasted for 16 hours. I phoned the doctor on Friday and told him I quit. I couldn't pretend that it wasn't affecting me. Plus I didn't think I would be able to manage a 10 minute walk to the bus stop and back every day, and having to walk up a steep hill to the hospital .
In July I had another MRI, and there was a small area that was highlighting with contrast - they weren't sure if it was residual tumor or scar tissue but they thought it was most likely to be residual tumor (it hasn't changed at all since then so they now think it is probably scar tissue). They suggested I have local field radiation (just to the tumor bed, not the whole head and spine) and chemotherapy which I agreed to. So I had 2 rounds of chemo, then 6 weeks of radiation and then another 3 rounds of chemo. They were going to give me another 3 rounds, but my blood counts weren't recovering as quickly as they should have so they thought that the risk out weighed the potential benefits.
The radiation was easy, towards the end I started getting headaches but they weren't too bad. Chemo was a bit tougher. I got IV etoposide, carboplatin and vincristine on day one (Friday), and then 4 days of oral etopiside (Saturday to Tuesday). By Thursday I would be able to get up and do some stuff around the house. Saturday or Sunday I could go out and get groceries. My blood counts would normally bottom out at about 2 weeks. The first round wasn't too bad - I got sick but not bad enough for hospital. The second round I needed a blood transfusion and the last 3 I ended up in hospital in an isolation ward for a week.
So here I am today - 3 years since diagnosis and almost 2 since my last treatment. For the most part I'm ok, but I never used to get sick, and now I seem to have something wrong at least once a month. Maybe I've just become the worlds biggest hypochondriac. Cancer is kind of like waiting for a standby flight. You would really like to do that load of laundry, but what if you've just put it in and they call and say you need to be there now. I often feel like I'm just waiting for the next round, and find I don't like to make plans or commitments more than a couple of months into the future.
On the other - I lived in London for a year, but before I lived there I spent a day there with my sister on a stopover flight to the US. I saw more of London (I mean the touristy things) in that one day than I did in the entire year that I lived there. You tend to put things off when you know you have an endless amount of time to do them it. My two years in London was cut short to one year and I never got to go to all the places I had wanted to see. With life I'm more lucky - I got a warning, and I'm doing things I've always wanted to do, but had planned to do later.
I now live with my parents. I have a small web design business, but it's not really bringing in enough money to pay the bills yet. I started a children's organisation for orphans, so that's what I spend most of my time doing. We're building a preschool for a local children's home and I'm going to go in a teach the kids for a couple of hours every day. I'm so looking forward to it.
So that basically brings you up to date on the last 3 years of my life.