Monday, December 21: The day after my last post, I received a call from someone – I think a nurse – saying the oncologist had asked her to let me know she had decided to go ahead with the original radiotherapy. I started to protest about having had eight days of wondering and worrying but realised there was no point in shooting the messenger. She also asked if I’ll like a room booked at the hotel – yes please. And would I like a taxi to take me to and back from the hospital – no thanks. It’s a fifteen minute walk.
On Friday, the oncologist called to say she had changed the schedule! I was less reticent about the chopping and changing. She explained it was because she was concerned about the fact I was having double doses of radiation on three of the days and felt there was a safety issue and it could increase the side effects. Understanding the reasoning behind the changes made such a difference to how I felt.
I won’t be having double doses and will have two Saturday sessions and a final one which will mean coming up and returning home on the same day. She said she’d booked the hotel room and made the arrangements for the extra Friday nights. When the DH checked, the hotel hadn’t had any NHS bookings but the very helpful receptionist said she’d contact the booking person. She called back to say it was sorted. I dread to think how I’d have reacted if we arrived to find no room at the inn.
While I had the oncologist on the phone, I used the opportunity to express some of my concerns, not least that there seemed to be no channel of communication between patient and the consultant. I totally understand we can’t have a direct phone number – consultants would never get their work done with patients calling all day with queries. But, I did want to know there was a way of getting any questions to her. She said I could always pass a message via the specialist nurse.
I said I wouldn’t trust her to pass on a message. There was a pause at the other end so I asked her if she ever received the research papers I’d sent. Another silence then, “No, I didn’t.” This, despite the fact the nurse had told me she’d pass them to the oncologist.
“That’s when trust broke down,” I explained, “and it’s not possible to repair things.” I didn’t tell her about the little power games she plays, like withholding my blood results until I ask, and finally, insist on knowing them. I think perhaps I did mention her voice, which oozes sympathy, but no empathy.
“Well,” she said when I finally shut up, “if it’s any consolation to you, she’s leaving after next week. I think her replacement is excellent.”
Though she probably won’t ever call me again – our conversation took as long as our last face to face consultation – I felt quite buoyed up by the time the call ended. Explanations to make sense of things, communications are wonderful things.
As the day of my first radiotherapy approached, I found it difficult to sleep. Even when I told myself it would be fine, thousands of people have radiotherapy without major problems, friends have shared their stories to reassure me – but my subconscious clearly was not listening. The main worry is that my throat will be so sore I will first need morphine and when that doesn’t work a feeding tube. My oncologist has told me about these side effects so often they are seared into my brain. I told her if I needed a feeding tube it would have to be a peg tube in my stomach as there was no way anyone could get a tube up my nose. Then, I started worrying about how I could have a tube (down my throat) while wearing that mask.
The DH drove me to Edinburgh. I checked into the hotel. We went to the Cancer Centre. Someone took off for a chat about everything – when I expressed my fears about feeding tubes she said it was not likely I’d need it – I would have a sore throat but they could do something about it before it reached the stage of needing a feeding tube. As for the mask – apparently they cut a hole in it for the tube – so I know it is sometimes necessary, but am trying not to dwell on it. She said I’d be fine for the first week and would be able to eat Christmas dinner without a problem.
Finally, I was called into the room where it all happens. I can’t tell you much because the moment the mask goes over my face my eyes are shut, so although she had explained the bits of machinery moving around she said I’d see, I didn’t. A few minutes of wrestling with the mask, which as tighter even than the last time (is my face getting fatter?), and the radiographers leave the room and there’s just me and the machines.
The actual treatment took only two or three minutes.
It’s the winter solstice and the days will start to lengthen, even if we aren’t aware of the change immediately, so I hope it’s an auspicious day to start the radiotherapy – one down, 19 to go.