Month: June 2014

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…

Maggie’s Centre

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I went to see my oncologist on Wednesday. Usually I’d get the tube, but today I needed to take a minicab. Brendan and Molly came with me. The oncologist said that the tumour on my rib had grown one and a half centimetres in two and a half weeks. My body sees the dead bit of tumour as an abscess, and so it fights it, which it what causes the temperature spikes. He said he’d start me on the drugs that target the ALK gene, and that they should reach full efficacy in about nine days. These drugs have so far only been administered to 300 people. So when it came to mentioning side effects, he said I might discover some for myself! One extra thing he said is that the drugs would contribute to some shrinkage of the tumour. As for radiotherapy, he thinks he can give it to me but at a reduced intensity. That’s a relief. I did wonder what would happen to all that mass otherwise. Lastly he prescribed me some morphine for pain relief. I was wearing a BJC t-shirt that day. To me it means British Juggling Convention. For my oncologist BJC stands for British Journal of Cancer.

We put the prescriptions in to the pharmacy and were told there would be a 40 minute wait. We decided to use that time constructively. I felt that I needed some financial advice, and there’s a special centre in the hospital grounds called Maggie’s Centre. It’s a lovely place. There’s no reception, but when you walk in, you’ll probably be greeted by a member of staff. They have a lovely way about them. There’s no pressure on you. You can simply go in there and sit alone if you want. Also you are free to help yourself to tea and biscuits. The space itself is just fantastic. There are organised classes for various things, maybe networking with other cancer patients, help with sleep, all sorts of things.

While I spoke to someone about my financial situation, Molly went back to pick up my prescription. They gave me the morphine, but the special drugs were not there. This was very frustrating. I had hoped to start them today. I needed to take some morphine, because I was in pain. Afterwards I had a bit of a funny turn, so we asked if there was somewhere I could lie down. They showed us into a quiet room with several couches in it, and I lay down for at least half an hour.

A bit of a drama

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I had a good night’s sleep on Sunday. It was the only night I slept while I was in hospital. I slept five hours in total. The next morning I felt very good. A doctor came to tell me that I would be discharged. I asked her if I could have any alcohol. At first she said no, and I was ok with that, but when I mentioned that I was going out that evening, she said I could have one pint.

My ward was on the sixth floor so, as I was feeling strong, I decided to go to the window to take in the view. I stood at the bottom of the bed of a dementia patient. He said: ‘you’re walking much better today,’ which was a surprising observation from him! He went on to rationalise what he was doing in hospital with this story: ‘I was very lucky, I got offered this job on a film as a patient.’

Most of the morning I had been sitting on the chair by my bed, but eventually I felt the need to lie down. It was about 3 o’clock when I finally got my demob papers. Brendan came in to take me home. Having lain on the bed for a while I was feeling weaker. I needed to take Brendan’s arm and walk very slowly. I couldn’t carry any of my bags.

At home Mum made a lovely macaroni cheese. It’s easier to have a good appetite if the food is appealing.

Darren gave Brendan and me a lift to the pub for the quiz. I decided to have shandies, that way I could potentially have two pints. We did pretty well at the quiz, but towards the end I was struggling with discomfort, so we abandoned Mike to collect any potential winnings.

At home we decided to take my temperature. It was 38.6. I had forgot to ask what I should do when my temperature spikes, so Brendan phoned the ward I had been admitted to. The nurse said to take paracetamol and apply cold compresses to various parts of my body. She said if my temperature hadn’t gone down by 3am, then I should go to A&E. Brendan and a cousin of mine, Molly, nursed me through the early hours. My temperature did drop but never went below 38. I decided to stay at home, given the downward trend. I slept on the couch downstairs, and had a bucket to wee in!

The next morning my temperature was up again. I had more paracetamol and more attention from Brendan and Molly. Brendan phoned the ward I had been discharged from. Their advice was very similar. If my temperature didn’t come down by 10am, I should go to A&E. After 8am Brendan phoned the Macmillan nurse. Her advice was very different. She said because the temperature spikes were due to the dead bit at the centre of the tumour, it was not a worry in itself, and we should consider other symptoms too.

Bid for freedom

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Some Australian cousins of mine, Carol and Damien, were in London this week. The plan was for a big family get together on Saturday. It seemed likely I wouldn’t make it, as I’m still in hospital. So they came to see me on Friday. They had just got off a plane from Japan 24 hours earlier, so they were struggling a bit, especially Damien, who could barely keep his eyes open. It was lovely to see them nevertheless.

The next day I saw the registrar. He told me the episodes I had had the other night were partial fits. That means the two year clock for when I get my licence back gets reset! He asked if I would get any visits from friends and family over the weekend. He said I should get them to take me out for a short trip. I asked if I could go home in that time, hoping I could make the get together, but he explained that that was too far away if something went wrong. I wonder whether if I explained why I wanted to go, he might have made an exception.

He came to see me again the next morning. He was worried because my temperature kept spiking, so he wanted me to have a CT scan that morning. He came back later with the results. Mum was visiting at the time. He said the extent of the tumour on my rib was much bigger than on the previous scan. In the picture he drew, it covered the top of my lung. He said it had grown so fast that it couldn’t make the blood vessels to supply itself. So there was a bit in the centre which had died. This would explain the temperature spikes. There is some infection in the rest of my lung, but it now seems unlikely I had pneumonia. This tumour is near the site where I already had radiotherapy, and it’s very large in its extent. For this reason it might not be possible to treat it with radiotherapy. I may just start straight away on the drugs that target the ALK gene. The registrar said he’d email my specialist and send him a copy of the scan so that he could decide the course of treatment first thing Monday morning. The registrar said I would either be discharged on Monday, or transferred to my specialist’s hospital. This news was double edged. It’s good to finally get to the root cause of the problem, but it sounds quite scary!

Anna and her daughter, Maria, were also visiting at the time. While the registrar was there, they went downstairs to get some tea. On their return, Anna asked if I wanted to go for a walk. My face lit up. We left Maria with my Mum. When we got downstairs I said to Anna that I’d like to walk down to some locks on the canal. It’s quite a walk. Anna thought it wasn’t a good idea, because if I had a problem on the canal, it would be difficult to get to me. She was right of course. So then I said I wanted to go to a pub next to the canal, and sit in the beer garden. She agreed to this, although it was still a long walk. We both had a coke, and sat in the beer garden. While we were there, Anna went and had a smoke. During this time she phoned the ward, essentially to let them know where we were, and that we were ok. Somehow this message created some confusion. She had given the impression that we would be back in five or ten minutes. If we had got up straight away to walk back, that would have been extremely optimistic.

Brendan had arrived at the ward in the meantime. He phoned Anna, worried about where we were. She said we would make our way back. When she was at the bar, Anna had asked the staff how to get back to the hospital by the canal. So that’s how we went, despite her earlier misgivings. The pub is at the bottom of the flight of locks, so I did get my initial wish after all. The walk back to the hospital was longer than Anna had imagined, and she got another worried call from Brendan. They agreed to come out and meet us on the road. Despite all this worry around me, I had a lovely afternoon.

“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.

A good Samaritan

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There was a young British Asian lad in the bed opposite. He’d just had his appendix out. I asked him if I could borrow his phone charger. ‘Yeah, no problem!’ He got out of his bed, walked across the room and plugged my phone in for me. I could see him wince as he got out of bed; he’d just had his appendix removed.

Every now and then, he wandered off to have a smoke. So I asked him if he could get me a paper. ‘Yeah, no problem!’ Another man at the other end of the room heard this and asked if he could get a paper for him too. The young lad duly returned with the two papers.

I asked him for another favour. I had a drip on the right of my bed, but wanted to lie on my left. He happily moved the drip to the left of my bed.

He was discharged today.

Mum visited this afternoon and brought my phone charger, so that won’t be a problem again. I’m not sure who I can ask to get the paper now.

I saw some more doctors today. They now think I have pneumonia.

Admission

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I was supposed to start radiotherapy today. That’s not going to happen now. A couple of days ago I was really struggling with my breathing. I spoke with the Macmillan nurse yesterday and she could hear me struggling on the phone. She spoke to the oncologist and he said I should go to A&E.

It’s a short walk from home to the bus stop, and a short walk at the other end from the bus stop to A&E, but it took me ten minutes for each, and I had to hang on to Brendan.

I was seen by a doctor within 20 minutes. The first thing he asked was how long had I had a temperature. I didn’t know I had one. It was 39.3°C. During the conversation I mentioned cancer. He didn’t know I had cancer. This was the first thing I said at reception. Later he asked me which specialist I had seen when I first came to this hospital. That was in November, and I saw him once. Since then I have seen hundreds of medical staff. Besides which, you’d think the hospital would have a record of that.

First I was given a chest x-ray, then I was then taken to a holding room. Here I was put on oxygen to help my breathing. A nurse took lots of blood from me. He put in a cannula to do this; he said it worked for taking blood, but not well enough for any other purposes. At the same time a doctor had to take blood from a deep vein in my wrist. She said it would hurt. It didn’t hurt as much as the nurse’s attempt to put in a cannula. The doctor put another cannula in my other arm. I was given lots of rehydration fluid as well as some serious antibiotics. I was told I would have to be admitted to hospital for a few days to continue the treatment.

Mike came in for the last half hour of visiting time, which was a pleasant surprise. He also got me a toothbrush and toothpaste. I didn’t expect to be admitted when I came. My radiotherapy will have to wait.