Month: July 2014

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

Some solutions?

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Last Saturday I walked to the paper shop unaided. I wanted a CD that was reviewed in the paper, so I made my way to Westfields. I had to walk up to the station to get the tube, and the walk from the tube to Westfields was maybe twice as far as the walk to the paper shop. They didn’t have the CD from the review, but I got a couple of old CDs I wanted, so the journey wasn’t wasted. When I got home, I sat up on the couch for two hours listening to those CDs. After such a promising morning, I promptly got sick!

My appetite was still very poor, and on Monday I didn’t have the energy to walk to the paper shop. That evening two juggling friends, Joseph and Dorothy, visited. I wanted to show them the hall near my house that I think would be a great juggling space, so we walked there. It’s much further than the paper shop, so I had to hang on to Joseph to get there. The hall was closed, so we could only look in the door, but they both thought it was a great space. I was shattered when we got home.

The next day the physiotherapist came to show me how to use the walker I had asked for. It has four wheels, a space for some shopping and a seat, so that you can put the brakes on and have a rest if you are feeling tired. I had seen many of my passengers at work using this walker. After she set it up for me, we went to the paper shop. On the way back I began to get tired and started breathing a bit more heavily. The only comment she made was that maybe I should have stopped to have a rest when I began to flag.

That afternoon the community nurse called. I told her about the problems I was having. My poor appetite, getting sick, constipation, and my mobility problems. She said I should take the laxatives for the constipation (I had been taking prune juice, which seemed to be working well), and I should take regular painkillers for the lower back pain I was experiencing.

The next day I had an appointment with the oncologist. Brendan came with me, and we went by tube, with my walker. Usually I would walk the last bit from the station to the hospital, but once again I had no energy and had to get the bus. My usual oncologist was away, so I saw a doctor I hadn’t seen before. He was very clued up on my case, and was also a very good listener. He agreed with the community nurse’s recommendations, and also he prescribed a low dose of steroids to boost my appetite. I told him that I’d like to go to the European Juggling Convention, which starts next Saturday Millstreet in Ireland. He said he thought that would be a great goal, and if the steroids boost my appetite, and I take the laxatives and painkillers, I may be able to achieve it!

On Friday another juggling friend, Trevor, came to take me out for a walk. He brought a wheelchair, which I could use to walk with, and if I got too tired he could then push me in it. We drove about 7 miles from my house, to where the countryside starts in earnest, and then chanced upon a car park. When we got out of the car we stood for a few minutes admiring the great views over West London. Then we set off walking. I walked much further than I thought I’d be able, and I didn’t need to ask Trevor to push me. Towards the end of the walk I started flagging; that was partly due to the distance, but also because the last part of the walk was uphill. We both really enjoyed the walk. For me it was great to get out and have some exercise. Trevor was happy because I showed him a part of West London that he wasn’t familiar with, which is criss-crossed with lots of lovely walks.

The steroids have certainly improved my appetite, they may also have had an effect on my strength, helping me to walk further. Also I haven’t had any more problems with sickness. The laxatives took a few days to have an effect. Personally I think the prune juice is more effective. If all these improvements continue, I may be well enough to go to Millstreet.

There’s one other thing that’s changed recently. I no longer wake at 5 or 6am, but often sleep in till 9, 10 or 11. You may think this is a bad thing. However it’s a bit more like the old me, which is somehow reassuring!

Progress report

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I’ve been on the special drugs for about two weeks now. I’ve been very up and down. I have little appetite and to make matters worse, I get sick occasionally. I have been given anti-sickness drugs; maybe I don’t take them as much as I should. My mobility is still very poor. I walk to the local paper shop each morning, but that’s about the full extent of my activity. The fact that Wimbledon and the World Cup are on at the moment probably doesn’t help matters. Nevertheless I have very little energy to walk, as I’m not eating properly.

On the plus side, I no longer have pain from the tumour pressing against my back, which hopefully means it’s been stopped in its tracks. Also my breathing is generally better, although for the first week or so, it got worse.