This is a strange story for me to write. It will at times be a sad story, in many ways it will be happy and perhaps even funny. It will be an adventure that entails anxiety, flirting with danger, fortitude in the face of adversity and many attempts to look on the bright side. There will also no doubt be moments of anguish and despair, and a lot of uncertainty. It's a story that will hopefully be cathartic for me, but also interesting and perhaps informative or even entertaining for others.

Monday, June 21, 2010

Proverb

Smooth seas do not make skillful sailors.
- African Proverb

Wednesday, June 9, 2010

Starting Radiation

On the 18th of May I had my first of 20 radiation sessions. These are daily for four weeks (no treatment on the weekends). I went in for my first treatment and they put my mask on and strapped me down to the bed. They spent a few minutes lining me up correctly with the lasers (and speaking what sounded like another language), took an xray, then left the room while they radiated me.

The machine has a big arm that reaches above the bed and over my face (Click here to see a picture of one http://folhealth.com/Varian%20iX%20with%20patient.jpg). The big circle part over your face (very technical terms I'm using!) open up and then you hear the machine turn on and start radiating. You can't feel or see anything. Then the whole machine rotates and the arm goes underneath you and you are radiated again from the bottom. Mine is twice from the top and twice from the bottom. All up it only takes about 2 minutes from the time the technicians leave the room, till they come back in and take my mask off.

After my first session I saw a nurse who explained the side effects. I was told not to put any chemicals on my skin. That means no perfume on my neck/chest, I have to be careful when washing my hair that the shampoo doesn't go on my neck, chest or back. I've been told to regularly use sorbolene cream to stop the skin from drying out too much. She also told me that radiation causes fatigue and that this would be worse about 2 weeks after I finish the treatment.

Tuesday, June 8, 2010

Hannibal Lecter

It’s been a month since my last post. This does not mean that things have been uneventful, just that I’ve been busy and blogging has not been a priority! Sorry to everyone that has been waiting for a post. I will now update you on what has been happening.

I’ll go back a month to the beginning of the radiation (a lot has been happening so this may take more than one post!).

My radiation journey began on the 10th of May with a preparation session. I lay there while they lined me up with lasers from the roof and walls, drew all over my chest and neck, scanned me, then gave me three little tattoos (great for someone with a huge needle phobia!!). These tattoos are so that they can line me up with the lasers to ensure I’m in the exact same position each time.

I had read about people needing to wear a mask for their radiation to keep them still and in the same places, so although the tattoos were bad at least I wasn’t needing the mask.

Three days later the hospital called and it turned out my relief about not wearing the mask was short-lived. They had decided it was best that I did have one. Now I had to have the mask made and do all the scans etc for the preparation again. So not only would I have to wear the mask each session, I now had 3 tattoos for no reason!

Having the mask made was pretty awful. I lay on the bed (which feels like a slab of concrete) and they taped cotton pads over my eyes to protect them then gave me a bell that I could ring if wasn’t coping. They then lowered a large piece of soft mesh over my head, neck and shoulders, pulled it tightly and clipped it into the sides of the bed. They then contoured it to my face and neck and let it dry and harden. To speed up the drying process they used ice packs.

I’m not a claustrophobic person, but having this so tightly over my face with my eyes covered for 15-20 minutes was very uncomfortable. I had to continually remind myself that although it was difficult to breath, I could breathe. The mask was so tight that it left indentations all over my face, squashed my lips into my teeth and hurt the end of my nose. But at least I couldn’t move and that is the intention!

After the mask dried, they spent about 5 minutes lining me up with lasers again. This was also strange as I couldn’t see but they were moving the bed up and down, and back and forth. It made me feel quite dizzy and totally mucked up my spatial perception. I couldn’t tell at all how much I was moving. They stuck tape all over the mask and marked the radiation reference points. I then had another CT scan with the mask, which the radiation oncologist would use to map my radiation area.

I left feeling quite nervous about the radiation. It was going to be four weeks of lying topless on a slab of concrete while they suffocated me with a mask that made me look like Hannibal Lecter. But at least it doesn’t involve a needle!