So Thursday turned out to be a disaster, chemo didn’t happen. They couldn’t give me a date/time last time I was there, and so most of last week and the early part of this week I was chasing it up, getting transferred from one hospital department to the other. Eventually I received a phone call on Tuesday afternoon, I wish I had taken down the person’s name as well as the details. Thursday. Bloods 08.30 Clinic 09.30 Chemo 10.30 – sorted.
I arrived 08.20am Thursday morning to check in.
“Your not booked in until tomorrow Friday”
“Not possible” I explained, “Dr S doesn’t even have a clinic on Friday”. I would have pointed this out has the caller earlier in the week had said Friday.
“Leave it with me I’ll find out what is happening, we’ll keep you informed”
The receptionist didn’t give me a ticket for bloods, so I was surprised and pleased when my name was called out. Bloods taken (platelet levels have to be checked before any chemo can begin) line flushed, dressing changed, at least something was happening. I wasn’t kept informed, I had to ask, but eventually I was told that Dr S would see me, I took this to mean that chemo was going ahead – nope. I eventually got to see Dr S, I can’t get angry with him, in fact I wasn’t even angry, it’s a change I’ve noted since being diagnosed, I don’t let things get to me, don’t get angry, life really is too short. I could understand how the mix up happened, simple human error, it shouldn’t happen, but I does doesn’t it, we’re all just as guilty. We discussed the side effects I’d had last week. The neuropathy is likely to increase and probably last longer. The number of days to take the steroids has been extended to try to counteract the fatigue. Not happy at being on steroids, but not happy with the fatigue either, so we’ll give it a go, and of course anti diarrhoea tablets, plenty. The floating half a stone I have is currently off, that’s the weight I’ve lost in 2 weeks. Dr S expressed a little concern at this, but I’m not unduly worried. It’s been going on and off for the last six months. I’m sure the rest of his patients would get a bit pissed off with us if they knew we spent the next 15 minutes discussing music – again. This time Bruce Springsteen, Mr S saw him last weekend, and of course, The Stone Roses on Sunday.
The big problem is Sunday. The side effects have of course been put back 24 hours, but more importantly the infusion pump is due to be disconnected and the line flushed through sometime Sunday evening, and that’s not going to happen. That leaves me with two options, both dependent on the co-operation of the district nurse. I could have he pump disconnected early before the infusion has finished. Dr S said that would be ok if it was only a couple of hours early. I think it’s going to need to be more than a couple of hours early, and I don’t want that, I want every drop of this poison to get inside me and work. Otherwise it’s me carrying the pump around Heaton Park Sunday night, and the DN agreeing to remove it Monday. I’ve got a feeling it’s going to be the latter, as the DN’s do not like to be tied to times.
All geared up for chemo again on Friday, and a late start this time, 2.30pm I had been told. I decided on a leisurely trip to the other side of Manchester, stopping in Ashton on the way for a bit of shopping. So much time on my hands I was sitting outside with a coffee listening to the most wonderful busker in the shopping parade. Boy did he take a lot of money in the half hour or so I sat there drinking coffee and watching, but well-earned. I was almost disappointed to be disturbed my mobile going off. The trials unit at The Christie, my chemo was ready when I was. They were told to expect me at 8.30am ! By the time I arrived it was 2pm anyway, but maybe an early start would have avoided all the potential problems over the pump on Sunday. The staff on the trials unit were wonderful, appreciating the problems I had encountered over the last 24 hours, and did everything they could to put things right. Before I knew it they had organised everything, district nurse contacted, pump removal arranged for Monday, appointment secretary came to see me personally, next appointment sorted, and arrangements for Kendal Calling weekend in hand. Chemo itself was pretty uneventful, I slept through most of it again passing the time before I was ready to go home just after 7pm. Neuropathy kicked in again almost as soon as I got home, feet as well this time, but at least I knew what to expect so not quite so alarming. Nausea on Saturday, interspersed with sleeping and feeling a bot rough, but nothing compared to the previous cycle.
And so Sunday arrives, a reasonable nights sleep, 5 hours uninterrupted is good for me at the moment so I mustn’t complain. The sky is just getting rid of the last drops of rain before today’s concert. I’m not even contemplating wellies. Considering that a week ago I wasn’t even bothered about going, I’m getting quite excited now. Reviews of the first two nights have been very encouraging, and the final night can only be better – can’t it ? Here’s a picture of Heaton Park the last time I was there, at least the weather is guaranteed to be better than this – isn’t it ?