Monday 05, January 2021: I fully intended writing this update yesterday – fully intended doing a Zoom Pilates, class, too, and had packed my mat and the baggiest tee shirt I could find – but by the time I was checked into the hotel, and the DH left, I was done in. Leant back on the pillows and woke up too late for Pilates.
Last week I came up for three treatments, staying for two nights. I had my weekly meeting with the specialist nurse – a different from the previous week. Basically, they go through a check list of side effects from nausea to tiredness, from skin problems to appetite problems. So far, I’m glad to say I can say no to almost everything – except that the heartburn has returned. I was prescribed an antacid with Oxetacaine, a local anaesthetic – which I was assured would be helpful in easing the pain when my throat gets worse. It is described as peppermint flavour, a description written by someone who has clearly not swallowed it.
By then, tighter restrictions were in place and the hotel restaurant was closed, though they did offer a reduced room service menu. On my first night I received a call from an NHS Manager to apologise for how things were at the hotel. I said it was fine but she said someone had complained the previous night about the room service food and she was going to try to find alternative accommodation. I said I was happy with the location as I can walk to and from the hospital easily and didn’t really want to move so far away taxis would be involved – or, worse – be admitted to a ward. That last might not have been a terribly diplomatic thing to say to a hospital manager.
I did try the room service food and it was horrible. Next day, I went to the filling station across the road which has a small but well-stocked Waitrose and filled a basket with lots of lovely tasty things for a picnic in my room.
I was asked to report to a different room and machine on Thursday because a paediatric patient who had to be under anaesthetic needed my room. My first thought was for the child’s mother who wouldn’t be able to stay in the room and must surely be beside herself with worry.
When I arrived for my radiotherapy on Thursday, a message came through from an NHS manager (a different one) to say on Monday I’d to report to the hospital and not check in at the hotel. This was on Hogmanay and I couldn’t imagine how alternative accommodation could be found over the New Year holiday weekend. I went home wondering and worrying about where I’d lay my head when I next went up for treatment.
Yesterday – Monday – the DH drove me back to Edinburgh for an 11am treatment session. A paper with a booking for a self-catering studio room was in the changing room. After the session – first time I’ve met a male radiographer! – the DH and I went to take a look. It’s in a very central location – central for the sights of Edinburgh, that is, but a long way from the hospital. If I was here on holiday and everything was open it would be perfect but it would take about an hour to walk to the hospital so I would need to depend on a taxi picking me up and taking me back. Now we are in full lockdown and this new strain of the Covid virus seems to be so much more virulent, I don’t fancy getting in taxis. Well, I could walk one way but I think a two-way walk might be too much, especially if it’s raining. And, Edinburgh is cold.
Fortunately, The Village was very happy to welcome me back. I feel bad the NHS never got in touch with them to explain why they had not made any bookings for patients this week. Perhaps if they had explained about the problems with the food, the staff could have done something to address them? They are certainly very happy to do anything they can – including installing an extra heater in my room. Did I say Edinburgh is very cold?
I’ve now had nine radiation treatments. Tomorrow I’ll reach the halfway mark. I’m still in awe of the technology. When I said I’d been watching YouTube videos because I couldn’t visualise how the machine revolved, the radiographer picked up the remote control and demonstrated how it revolves round me and under the table. Their patience and willingness to answer my questions is a delight. I think it’s because they are so proud of their work and their skills, they are keen to share their knowledge and give people a better insight into how radiotherapy works. Whatever, it is – as far as I’m concerned radiographers rock!