What are the right questions?

In my last post I reflected on the psychological impact of my radiotherapy after my brain tumour diagnosis. I hope what came through this was a reflection on how much of this impact could have been avoided by me asking questions, and that it didn’t read as criticism of the team treating me.

A friend asked me what questions I should have asked. We agreed that this would make a good follow-up post which might be helpful to others starting out on the same road.

What follows isn’t an exhaustive list, but hopefully the questions I suggest will help prompt some thoughts for anyone else who is unfortunate enough to find themselves in my situation.

What are the right questions for a patient to ask about their treatment?

In the end I don’t think I can give a definitive answer; it all depends what assumptions you as the patient are making. I went in thinking that because of my educational background I know what cancer is, how radiotherapy and chemotherapy work (right the way down the the intracellular level). And because of the prep I’d gone through the week before, I thought I understood what it would feel like and what would happen. As the post reflecting on the first week shows, this assumption was totally wrong and did cause me some distress for a few days.

The first thing I’d advise my month younger self to do is to think about digging into these assumptions and ask about them. Specifically, despite him thinking he knew it all, I’d suggest my former self considered asking:

Can you just remind me what’s going to happen when I’m in the machine?

This would have dealt with my assumption that I knew what was going to happen. I’d have found out that I was going to go into and out of the machine twice and I could have asked follow-up questions to find out why.

This would have removed a significant cause of anxiety immediately. It would also have made the process more reassuring because I’d have found out that the first time in the machine was to scan my brain to make sure I was in absolutely the correct position. This would have been reassuring in and of itself as an answer. It may also have helped prompt the second question I could have asked:

How do you stop health cells being harmed?

I didn’t realise that this was part of my anxiety going in, but it was a question in the back of my mind that came to the fore when the machine started making loud noises 180 degrees from left to right behind the back of my skull. I had been warned about the noise, but my assumption that it was going to be a static beam pointing directly at the offending cells was totally wrong.

If I’d asked this question, I’d have heard that the noise isn’t caused by the radiation beam. It’s some screening moving in and out so that beam is pointed at the right place in my skull. It took me three weeks to ask about the noise; as I say in the previous post, once I heard the answer, the machine was immediately less frightening.

My radiology consultant doesn’t like to use the words ‘harmed’ or ‘damaged’ at all. He says that the treatment causes inflammation in the healthy tissue as it repairs itself. This is a useful reframing in its own right.

My reflection on this question leads to the next thing I’d consider doing differently:

Ask any questions that arise early

The appointments are short, 20 minutes or so. I always hate taking up peoples’ time if they have other things to do. Over the first few weeks of my treatment, I let this get in the way of doing the sensible thing. It stopped me acknowledging that I had anxieties and meant I didn’t ask the questions that mattered to me.

The radiographers in the room have been willing to answer all of my questions and put me at ease. They’re happy to take the time and have never made me feel like they need to move on. This calm professionalism is one of the things that has helped make the whole process bearable.

I’d also remind my month younger self that they are an important person in the process; it’s both ok to admit lack of knowledge and fear, and to take a bit of time to ask questions in order to reduce anxiety.

Finally, I’d remind that younger me of something I constantly say in my professional practice:

There are no stupid questions

This is a really important point, most patients are not experts about the treatment or the technology. However, they are experts in their bodies, their symptoms, and their hopes and fears.

If it’s bothering you, it’s an important question and not stupid at all. In fact, as I think my experience in the first week of radiotherapy shows, reducing anxiety will make it easier to sleep and importantly understand what is happening. In the end, this could help you stick with the treatment.

14 March 2023

Image description: a graphic of the words “Asking the right questions” in black handwritten script. This is surrounded by wavy ovals in orange, salmon and florescent pink ink.
Photo credit: HowardLake

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