Juggling

Passing Time

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Brendan here again. Apologies, the last post wasn’t the final one: Eamon asked me to write a post about the funeral.

requestThe weather was glorious. The sun was shining in the sky. The funeral service was late to start: there were so many people attending, that we had trouble getting the coffin into the church. Friends and family had travelled in specially from various parts of England, Ireland, The Netherlands and Germany.

We are very grateful to Father Sean, who agreed to the unusual request to perform a Catholic funeral service in an Anglican church. The church’s regular Anglican organist was also willing to bend the other way and accompany a Catholic mass. Eamon would have loved his prog rock leanings. He in turn enjoyed playing Eamon’s scores: we included a hymn that Eamon had arranged and a complete sung mass that he had written back in 1988, freshly rediscovered by his very good friend and former parish organist Georgina.

Eamon’s older brother Martin led the singing. He had also prepared an Order of Service booklet, with the lyrics, readings and some photos of Eamon. Nephew Jonathan gave a reading. At communion I sang a Georgian healing song, with a little help from my friends Benedict and Hermione. Then siblings Shirley, Nicola, Martin and I stood together and sang I Watch the Sunrise, with harmony support from Jonathan nearby.

Eamon’s former boss Amanda gave a moving tribute to him, remembering him as a model employee, and including many appreciative comments from his colleagues. His best friend Mike followed that with another beautiful tribute, “the best man’s speech I’ve been waiting to give”, recounting many treasured tales from their time together, some barely suitable to be spoken on hallowed grounds.

We carried the coffin out of the church through a jugglers’ guard of honour, and everyone headed off to the cemetery on two minibuses provided by Amanda and her company, and a red double-decker bus arranged by nephew Frank, displaying number six, one of Eamon’s traditional routes. The journey to the cemetery was a magical mystery tour of Eamon’s life: we departed from his pre-school playgroup, and followed his bus route to school, passing the place of his birth, primary and secondary schools and his final workplace.

At the graveside the priest led a decade of the rosary, Martin sang a Taize chant and we revisited the Georgian healing song. He was buried with his father, who died almost ten years ago.

We returned to the church hall, where a wonderful spread of food and drink had been prepared by our friend Caitlin. Marion and family had stayed behind and helped them to lay out the food. Caitlin’s family served it up to us attentively throughout the afternoon.

After a pause for food, the juggling got underway, and soon the air was filled with clubs, balls, hats and other flying objects. Some of Eamon’s more complex passing patterns were attempted. I’m not qualified to judge whether they were completely successful, but they looked pretty darned impressive. Some of the non-juggler friends and family even had a go, with assistance from many eager teachers. The juggling was accompanied musically by some of Eamon’s favourite CDs, and a recording of him performing a piece of Bach on the piano from 1987, that had just been unearthed by another friend. Those who weren’t juggling played boardgames, chatted, ate, drank, read tributes that had been fixed to the walls, viewed a slideshow of photos of Eamon’s life and tried out special Sudoku puzzles that Eamon had devised. Specially designed festival tokens were distributed to everyone.

every juggling festival has its tokens

The festival ended as Mr Blue Sky played out; family went back to Mum’s, jugglers went to the pub across the road, and celebrations continued into the evening, with a little to-ing and fro-ing between the two places.

Thank you to everyone who helped make it such a joyful celebration. Thank you to all who came, and for all the cards, mass dedications, flowers, kind words and hugs. And for donations totalling £454.18, which will go towards Maggie’s Centres and Macmillan Nurses. And special thanks to Linda, Sandra and Mark, who began plans for this event back in June. The whole event was a great comfort to his family, and a true celebration of Eamon’s life in all its richness.

tying up loose ends?

Ghost, c.1970

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

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!

Not there yet

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In the morning Linda, Sandra and Mark, three juggling friends, came round to have a look at a juggling space with me. It’s for an event that’s hopefully a long way in the future, although we may hold another event there in the meantime. Watch this space. They loved the space and also the people who run it. They came back to my place for some tea and to chat some more. I walked quite well this morning, unaided. When it came to talking I was struggling, losing my breath with every utterance.

My brother Martin and his girlfriend Jane came round for lunch. Martin cleared some of his stuff out of my room, which was great. Also it was lovely to spend the afternoon with them. In the evening, I invited Brendan, Darren and Mike round to my place rather than go to the pub. Mike was unable to make it as he had been away for the weekend. Darren and Brendan did come. I was still struggling talking, but had a good evening in their company.

I have not been eating well recently. Having managed to eat something in the afternoon, I brought it back up again in the evening. I was then very weak, but needed the toilet. It took me a while to get up the stairs. I nearly fell over in the bathroom. Mum called the out of hours nurse. The nurse suggested that an on call doctor come and give me some anti sickness drugs. I actually already had some, although I’d never had cause to use them. Nevertheless the doctor did come and check me over.

In the meantime I’ve experienced some side effects from my new drugs. The weird one is a visual effect. The first time it happened I was watching the world cup in a dark room. I didn’t have the energy to get up and turn on the light. I saw what looked like flashing blue lights reflected off the wall. I wondered if there was a police car in the back alley. There wasn’t. It was my eyes playing tricks with the reflection of the TV light off the wall. A more common effect is a kind of persistence of vision as I move my eyes. This gives everything a psychedelic look. It also gives people an ‘aura’.

Another side effect is one from morphine. However my new drug enhances the side effects of morphine. I’m getting some memory problems. For example I keep repeating myself in conversations. Here’s another example: I watched the Spain vs Chile match with Darren. We would have been talking about the game. Also it was a significant result. It was the game that knocked Spain, the world champions, and dominant force in international football, out of the world cup. A couple of hours later, my Mum asked me who had won. I couldn’t even remember who had played! Another example is I keep repeating myself in conversations…

“I don’t know what’s happening to me!”

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First thing Thursday morning, I walked up to the shop and got my paper. When I returned, I sat in the chair next to my bed and started reading it. Usually I lie on my bed. After a while I wanted to take off my trousers, as I was hot. I wear a hospital gown so this is not as immodest as it sounds. I walked round the bed and sat on the edge of it. I was unable to take my trousers off in this position, so I lay down. I was out of breath for about five minutes.

Later in the day, Darren came to visit and brought a scrabble set. We played a game and I think Darren let me beat him. After he went I had a cup of tea, and was then breathless for 50 minutes. Next my sister Shirley came to visit, shortly followed by my specialist, as it was his clinic day at this hospital. While he was there, Simon and Ivan, two outstanding jugglers, arrived. Simon wanted to talk to me about some projects he is working on. He’s very passionate about juggling and Shirley didn’t get a word in edgeways for the hour that they were here. After they left I was breathless again for a long time. At some point I wanted to go to the toilet. Shirley offered me her arm, but I couldn’t make it. So the nurse brought something for me to use.

I was moved to another ward on the sixth floor while Shirley was still with me. Then Mike and his friend Anna arrived. Anna had given me a lovely present, a DAB radio, so that I could listen to the world cup matches. The first one was at 9 that night. Later still Gina arrived. Shirley, Mike and Anna left at 8:30, the official end of visiting hours. Gina stayed later as she had arrived late. For the rest of her visit I was very breathless. The staff thought she was my wife, and they didn’t encourage her to leave. She stayed till nearly 10:30. I managed to get the last 20 minutes of the game.

The nurse in our bay was feeding the patient in the next bed through a drip. There’s a long metal wire associated with this drip, which looks like a guitar string. When she took it out, she dropped it on the floor between our beds. She carried on feeding the man. When she had finished feeding him, she went off, leaving the wire there. I saw her stood at the nurses station chatting to her friend about a wedding dress. I pressed my call button. She continued chatting for about five minutes and then went into a side room to attend to someone else. Another nurse answered my call. She picked up the wire for me. I saw her tell one of her colleagues what had happened and there was a look of horror on her face.

Later I had a dull pain in my stomach. I hadn’t opened my bowels for three or four days. I pressed the call button to request some laxatives. My nurse didn’t answer the call. Another nurse came. She gave me two sachets and suggested I try one first, and if that didn’t work, take the second one. I needed both. Maybe 50 minutes later I started passing wind, so I went to the toilet. I just passed a lot of wind. I felt more comfortable after that, but I still hadn’t opened my bowels.

I went back and lay on my bed, and my stomach started shaking, and then my arms too. A care assistant came into the room at that moment, so I called her over. “Excuse me, I don’t know what’s happening to me. My stomach and arms are shaking.” She went straight out and told my nurse. Maybe five minutes later she came into the room. She didn’t come to me though. In the opposite corner of the room was a patient who needed to be watched constantly. She went to that bed to relieve the attendant watching him, who was due for a break. Now she would not be able to attend to me for 50 minutes. I turned over and started crying. I thought I might have been fitting, in which case I would not be able to get my driving licence back for two years. After 15 minutes I pleaded with her, “Can you at least triage me?” She got a colleague to relieve her and did the triage. She also paged a doctor. If I had been triaged right after the incident, there may have been some evidence as to what had happened. Now after 15 minutes, my body had had a chance to recover. The doctor told her to take some bloods. After she had done this, I turned over in my bed and felt something wet on the blanket. She had left an alcohol wipe there. The doctor came to chat with me. She said it was unlikely that it was a fit, because I remained aware of what was going on, and I was talking.

I still don’t know what happened to me.