fucking head all over the place

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I can’t think straight. My head’s all over the place. I feel suicidal.

not good

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I’m really struggling with my breathing at the moment, even at rest. When I talk, or just walk a little way around the house, it’s very bad.

My hands have started to tremble quite badly, mostly first thing in the morning.

I get very light headed when I walk, and now it’s started happening just when I stand up.

I get hiccups quite often. This may have something to do with the amount of tablets I’m having to swallow.

I’m having difficulty with sleeping, due to the high dose of steroids I’m on. I didn’t sleep a wink last night. Oddly enough, I slept fine for the two nights I was in hospital.

I’m very emotional about all this, and I cry quite easily.

I’m due to see the oncologist next week. Hopefully he can address these issues.

pedalboard

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I spent £1800 before getting out of bed yesterday morning. I bought a midi organ pedalboard.  I’ve never played a pedalboard before, but I love Bach’s organ music. My elder brother, Martin, has played the organ, so if I struggle to learn, I’m sure he’ll help me. He’ll probably be keen to have a go anyway.

Admission II

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My community nurse and occupational therapist came to see me on Friday. They were worried. I was very lethargic, pale, and struggling with my breathing. The nurse phoned my doctor. He came round and was worried too. He phoned the hospital for an ambulance.

My sister, Shirley, came with me to A&E. It seemed like I was there for hours. I had an x-ray and was told one of my lungs was not functioning properly. They said I’d have to have a CT scan to see if there were any blood clots. I was going to be admitted to hospital. I was pretty much out of it while I was in A&E. When my sister was about to go home she asked if she should leave any of my medicine. The staff member said no. She told him there was an experimental drug among my medicine, but he insisted she didn’t need to leave it. He assumed they could get it from the hospital pharmacy. This meant I missed two doses, because my sister didn’t return until the next evening.

When I was in hospital, the staff measured my oxygen uptake regularly, and despite my poor lung function, it was up at 97 %. This may be because I wasn’t exerting myself at the time.

I didn’t have a scan while I was in hospital. On the Sunday the doctor said I could be treated as an outpatient. I was discharged with two courses of antibiotics. This surprised me, because they weren’t sure that I had an infection. I thought antibiotics are supposed to be issued sparingly. My drug intake this week is enormous. See the photo below!

pill intake this week

Fun and games

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When I returned from Ireland, I felt very good. That week I went to see my specialist. He took me off steroids. This seemed like a good idea, because it’s not good to be on steroids for a long time, and I’ve been on them since November, apart from a three week break. A week later my appetite became very poor and I started getting very sick on a regular basis. This is not a very good combination. Four weeks later I had lost about 12 kg. A side effect of this is that I spent a lot of time on the couch, and my mobility became very poor again.

When I contacted the specialist a couple of weeks ago, he suggested that I come off my experimental drug for a week. This surprised me, as I was expecting to be put back on steroids. The specialist explained that it was to rule it out as the cause. A week later there was no change, but I was told not to resume the drug.

A month later I had hired the local church for a couple of hours juggling. The turnout was quite good. It included Brendan, along with Darren and his eldest son. They’re relatively inexperienced jugglers, but Brendan and Darren’s son took part wholeheartedly. Darren sat and chatted with my Mum. I couldn’t do as much as I wanted to. I got tired very easily, and having passed so little lately, I wasn’t able to perform very well. We didn’t take enough money to cover the hall hire, but we have funds from a previous club to cover the deficit. Given the loss, we couldn’t hire this hall every week, but may hire it on an occasional basis. Several people were keen to come again.

On the Friday the community nurse came to see me. She recommended that I start taking steroids again, so my GP wrote a prescription for me. The dose the nurse suggested was quite high, which I am not happy about. It may affect my sleep, and when the time comes, it will take longer to wean me off them. When Mum went to the chemist to collect it, she came home with an anti-sickness drug which I already had a large supply of, and had been told to stop taking. There was no sign of any steroids. She went back to the chemist and eventually came home with the all important steroids, along with several other drugs. The red basket by my bed is full once again.

The first time I took the steroids, I lay on the couch and covered myself with a blanket. I shivered quite severely for about 10 minutes, and continued shivering for about half an hour altogether. This was very frightening, and I couldn’t stop myself from crying. I don’t think this was a result of the steroids. It hasn’t happened since. Now that I’m taking the steroids, my appetite has returned, and the sickness has stopped.

Mum phoned the NHS helpline, and they booked me an appointment at a local hospital clinic. The doctor tested my urine and asked me several questions. The urine showed a high sugar level, which is worrying, but didn’t reveal anything connected to my shivering episode. I asked the doctor if it could have been a fit. She said it didn’t sound like it, but she would have had to witness it to be certain. It didn’t feel like the previous partial fit that I experienced in hospital a couple of months earlier. The doctor said that if it happened again, I should call NHS direct, and they would send an on call doctor within two hours. I called Darren to ask him for a lift home. When I got home I needed his help getting to the door, I was very unsteady on my feet. The next morning, I felt very dangerous when I was having a shower. I nearly lost my balance several times. I’ll have to contact the occupational therapist to get a seat installed in the bath. This will probably be helpful to Mum too.

That evening, Gina, Mike, Darren and Brendan came around to play games. I think they were feeling sorry for me, as I won every game. We played Cards Against Humanity, which is an adult version of Apples to Apples (both are fun games). I was surprised to win that, and by quite a large margin. Then we played two games of another card game called Set. I expected to win that, as apart from Brendan I was the only one who had played before. However everyone played much better in the second game. We all won at least three sets.

I got my version of Set from Lazy Juggler. He’s a friend of mine and his prices are very reasonable. He’s very knowledgeable about board games. If you describe the sort of game you’re interested in, he gives very good recommendations.

Shrinkage

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Going to the European Juggling Convention did me the world of good. I went there with my walker, and used it through the week. The following week I went to Galway and didn’t use my walker at all. I haven’t used it since. At the festival I was more active than I would have been if I had stayed at home.

When I came home I had a CT scan, the first since I’ve been on this new drug. I saw the specialist on Wednesday this week to get the results. He said that the previously fast growing tumour had shrunk by 50%. As a result I won’t need radiotherapy. Also the cancer in my bones had scarred, which is the sign of it dying. I asked why the drugs stop working after 12 to 18 months. He said that the cancer evolves resistance to the drug. The fact that my cancer was growing so fast meant that it responded so well to the drug, but also might mean it grows resistance quicker!

That evening I went to the Wednesday juggling club for the first time in a while. There were a couple of new people there and I asked them if they did passing. I probably did more passing that evening than I did at the European Juggling Festival.

Millstreet

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I’ve spent the last week at the European Juggling Convention. This year it was held in Millstreet, a small town in Cork, Ireland. The town has a population of 1600 people, which was more than doubled with the influx of 2200 jugglers from all over the world.

It was great to catch up with many friends from Germany, the Netherlands, the USA, Mexico, and Australia, among other places. I didn’t do very much juggling at all, but jugglers also like to spend time playing games, and just chatting at festivals. Also I’ve always enjoyed directing other people as they work at passing patterns, and I got plenty of opportunities to do that.

I stayed in a cabin on the festival site, which was just outside the main juggling hall. The centre of town was only a short walk from the site, so I walked there a few times for a meal in the evening. On Wednesday I took a day away from the festival with two Dutch friends, William and Sandra. We drove around the Ring of Kerry, which is beautiful mountainous countryside just north of Millstreet. Driving around it in a day doesn’t really do it justice, it would be easy to spend a whole week there, but it was an enjoyable day out. Also I’d want to be able to walk and climb more if I spent more time there.

Now that the festival has finished I’m in Galway for a few days visiting relatives, then it’s back to London for a CT scan before another visit to my oncologist.

Ring of Kerry