Month: April 2014

More radiotherapy

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I had arranged to go to a ‘new circus’ show with a couple of friends last Thursday. I bought the tickets online to pick up at the door. Then on Tuesday I got a call from the hospital saying my radiotherapy treatment was scheduled for Thursday evening. I could have postponed it, but there was a 15mm tumour in my head (about the size of a marble), which could potentially cause me to fit, and I’d already put this treatment off by a week to go to the British Juggling Convention.

The venue for the show is quite near the Wednesday night juggling club, so I was able to pick up the tickets before going to juggling. If not for the tickets, I wouldn’t have gone juggling this week, because I was feeling pretty poorly – I’m still coughing up bits of tumour!

The next day, instead of being entertained by ‘new circus’, I went for my hospital appointment. The CT scanner which delivers the radiation moves in a vertical plane. To treat my head, the plan was to split my head into four segments, so to speak, and deliver the radiation along them. I was clamped into my custom made mask, and the machine moved around me, delivering the first segment of radiation as it moved. Then the therapists came back into the room and moved the bed around into position to deliver the next segment of radiation. This whole process was repeated another two times. I don’t feel anything physically when receiving radiotherapy; it’s very similar to having an x-ray, only the intensity of the radiation is much stronger.

Baby sweetcorn

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It’s three weeks since the radiotherapy treatment on my lungs finished. I’ve felt a lot stronger since then. I’ve also started coughing quite a bit. I was told to expect this. When I cough, I bring up what looks like baby sweetcorn. I was not told about this. It’s a bit disconcerting, but also somehow reassuring. The baby sweetcorn are a consequence of the tumour on my lung disintegrating.

Last week I was in Barnsley for the British Juggling Convention. I had written in a previous post that I was going to get a room for the convention. Noel, a friend, read this and offered me a bed in his parents’ mobile home, which I gratefully accepted. Other friends did book a room in a hotel two miles away. Noel’s parents’ mobile home was two minutes from breakfast, and also two minutes from the bar, last thing at night. I’m very glad I chose not to camp. In the first few days of the convention there were some very strong winds and many tents were blown down, some of them being destroyed. I was in the main hall when this news was first announced. The music playing at the time was the slow movement from Mozart’s Piano Concerto No. 21.

All through the week I was suffering with a bad back. This was not directly related to my illness, but a result of me sitting badly in the weeks beforehand. I had volunteered to run two workshops at the festival: one on string tricks, and one on four person passing patterns with walking. The string tricks workshop was not affected by my back, and went quite well. I provided magic rope for people to take part, and if they enjoyed the workshop, they could pay a small fee to keep a piece of rope, and cover my costs. Most of the people who attended chose to keep their rope. My bad back meant that I couldn’t walk and juggle, so I couldn’t demonstrate for the other workshop. But I press-ganged four friends into demonstrating the patterns for me. One of the patterns that I taught at this workshop was the one I had created while I was waiting for radiotherapy.

Despite not being able to walk and juggle, I was able to do some passing, but not nearly as much as I would have liked. There are many other ways, however, to pass the time at juggling conventions, and my bad back could not stop me from playing games, drinking beer and socialising.

The mask

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I had my mask made on Tuesday. The technician was a very chatty lady, which was a good thing because I had to be mute for at least 20 minutes. The mask is made from a plastic, gauze type material. It’s very malleable when hot, but holds its shape once it cools down. The sheets of plastic are warmed up in small baths of hot water. The first sheet was laid on a support, and I had to lay my head on top of it. Then two other solid sheets of the plastic were laid across my forehead and my top lip. The technician used some beads of plastic to mould it along the ridge of my nose. The final sheet of plastic gauze was laid across my face. I had to lay still for 20 minutes while the plastic set. Here’s a picture of the result.

mask

I had to return a couple of hours later with the mask on, for a CT scan which would be used to plan my treatment. It was then that I discovered how tight the mask is. At first I wasn’t quite in the right position, and wearing the mask hurt! However after moving a bit, the mask was still very tight, but not uncomfortable. For the treatment I’ll have to wear the mask for another 20 minutes.

Scan results

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I saw the specialist yesterday to get the results of my CT scan, and an overview of future treatment. I asked Brendan to come, because at these meetings I’m often given so much information, that I forget some of it. Brendan hadn’t arrived when I was called into the consulting room, so, with the doctor’s permission, I spent the first couple of minutes of the consultation writing him a text, saying what room we were in, and to come and knock on the door. Brendan arrived shortly afterwards.

The doctor said that I had shown the best possible response to chemotherapy. There is virtually no sign of the cancer on my lungs, in my bones and my glands. On my liver there is one small spot. It looks like a microdot! He asked me how I’ve been feeling. I told him that I feel very good and that my walking is much stronger. On Monday I walked two miles along the canal during the day, and that evening I met Mike for the pub quiz, which is a mile and a half walk in each direction. I don’t get out of breath when I walk fast these days, although my breathing is not perfect.

The next phase of my treatment is radiotherapy for the tumour in my brain. I will have to have a close fitting mask made for this, which will then be secured to the table for the duration of the treatment. The treatment itself will take about twenty minutes. Once again one of the side effects will be tiredness.

Brendan asked the doctor about the prognosis now. The doctor said: ‘if Fulham get relegated, my season ticket will be cheaper next season.’