Every now and again, things don't always go to plan when dealing with the NHS, and last week's oncology pre-assessment call was a great example. I was due to be called around 9.20am. Past experience has shown that appointment times don't always go like clockwork, so I wasn't too stressed when I still hadn't spoken to anyone by 10am. By 12.20pm it was a different matter: clearly something had go awry. So, I gave the helpline a call, and then was referred to the secretary of the oncology team (only got her voicemail). A bit later on I got a call from my favourite oncologist, bubbling over with apologies. It turns out that I, along with a number of other patients, had been scheduled to speak to a consultant who was actually away on a long-scheduled week of annual leave. Clearly something had gotten screwed up big time, but in all honest I was not too stressed since it was just a telephone call. Obviously had it concerned treatment, an operation, etc I might have been a bit more excitable, but in this case, no worries. As it was, all was OK with my bloods with regards to having the treatment cycle signed off, but there were a couple of niggles: my CEA had crept up a little, and I was now slightly anaemic. The latter issue then sparked an afternoon of working out what I should be eating, with help from the nutritionist in my support group.
A change from the normal routine this treatment cycle was that rather than heading to the day unit as with every other time, I was sent to the community treatment bus (well, lorry) that was going to be parked up in the carpark at Glastonbury hospital. This was the 1st week since the start of the pandemic that the bus was being sent out to accommodate patients, so it made a pleasant change of scenery. The bus, run solely on charitable donations, brings treatment options to patients living in rural areas, who otherwise might have to travel long distances. It really does provide a brilliant service to many. The nurse explained one such example to me: a woman was able to walk to the bus in her home town for her chemo, rather than face a 2 hour round trip. Oddly, it didn't help me much: the journey to Glastonbury was almost as long as the trip to the day unit, still, there you go. The staff on board were, totally unsurprisingly, lovely and helpful. The HCA tried to assist with my disconnection appointment: with treatment on a Thursday, the slow release pump is depleted by Saturday morning. However, due to the day unit being closed on weekends, and the scheduling department not permitting walk-ins to the cancer ward on a weekend, disconnection was scheduled for the Monday. in the greater scheme of things it is a lesser worry, but getting rid of the device 48 hours earlier makes for a much better quality of weekend. As it was, she was unable to get anyone to play ball, and the best she could do was get me an appointment first thing Monday morning.
Due to the nausea last time out, I studiously avoided breakfast before heading out for treatment, and I hoped this would do the trick. I felt OK during the day, and got home early afternoon still hanging in. Sadly by early evening it went to pot, and I was throwing up before tea. Still, I managed to stay on top of things for a few more hours this time, and only was sick the once. Take the wins when you get them. On a more serious note, it is a bit depressing if nausea has become a new normal for treatment cycles. Previously I have been relieved that side effects have been far and few between, but I was warned from day 1 that the impact of the chemo cocktail aggregates over cycles, and there is always a chance of this happening. So, really it is just a case of getting on with it.
On Friday I had a mix of work and logging into my support group Zoom call. During that call I got a call from the hospital, and was surprised to hear it was the HCA again. Somehow she had managed to secure me an appointment for pump disconnection the following day. There was no real reason for her to go out of her way and try and do this for me, but the fact she did shows what an absolute star she is.
So Saturday came, and as is always the case on a treatment cycle, the highlight of my week is a trip to the hospital to get the pump unhooked. As with the previous time, I was dealt with by the lovely Irish nurse. This time she only got me a cup of tea, not cake, but hey ho, you can't have everything. I was expecting another 1 hour wait whilst they hunted the heparin, but was surprised to find she had some to hand. From chatting with her, it turned out that (finally) based on the experience of 2 weeks ago, she had spoken to the ward sister, who had spoken to the pharmacy, who had authorised the ward to hold a supply for such cases. Clearly it helps me, but I would like to think it helps anyone else in the same boat.
As was good for the weekend, or so I thought. We made plans to take the dogs out on a day trip on Sunday, just a case of checking the weather in the morning and picking a destination. As has been the case many times in the past 1.5 years, life got in the way, and I woke up on Sunday with all manner of pains and cramps, and pretty much spent the day camped on the sofa, or laid on the bed, in discomfort. I did have England's T20 series clincher to keep me amused for a few hours, but it didn't remove all the bad. Suffice to say I felt pretty sorry for myself the entire day, and had a meltdown by bed time. The roller coaster of emotional highs and lows doesn't get any easier, or nicer, to deal with. So I just accept that I will have some bad days, and try and get past them as best I (we) can.
Thankfully I was feeling stacks better by the time Monday morning came around. As you might imagine, not being in constant pain certainly puts a different slant on a day, and it meant I could try and be useful. That evening we had a major landmark in re-entry into society post lock-down, with a trip out to an actual live sporting event. Admittedly, it was only going to be Taunton Town v Bristol City U23s, and it was a far cry from the last game I was supposed to attend (AC Milan v Roma at the San Siro), but still, you have to start somewhere. So, 6 of us met up at the Cygnet Health Care Stadium for a surprisingly enjoyable couple of hours. Incidentally, the stadium is ranked #25 of 41 things to do in the area, given #26 is a bridge, it shows the wealth of attractions available. The U23s played well, and ran out 3-0 winners. Hoping to see some of them flattering to deceive, and generally disappointing me, in the first team sometime soon.
And so the week trundled on, with little else to report. Work was still keeping me busy, which is a good thing, and we made plans for a trip away at the weekend to make use of the treatment off-week. Nothing huge, just a night in a camper van with the dogs.
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