I want to know

I’ve not been writing about my experience with radiation sessions because not much of interest was coming up for me, in body sensations or in feelings. Aside from an itchy raw rash that popped up on my chest and a bit of extra fatigue, the procedure seemed rather benign. Until this past Friday.

In my second to last session, 15th of 16 in total, the radiation machine, called a linear accelerator (LINAC), acted up. And that blip tested my trust.

Over the many sessions, I had come to know the ups and downs of the massive LINAC as it noisily circled around my body, delivering high-energy rays or beams to my breast from different angles without touching me. I intuitively knew when it was done, too.

Thus, in this session, my sense of the rhythm, the noises, and the time told me that the process was being interrupted. The machine simply stopped midstream for longer periods than it had before.

I glanced over at the computer screen and saw my file empty, then reappear, restarting the buzzing sound I recognized as administering the radiation.

The first time this happened, I stayed calm. I simply returned to focus on my breathing.

It felt like good synchronicity that while waiting for my turn before the session I had been reading Daring to Feel—Awaken the Healer within in which the author Alison Lingwood delves deep into natural methods for healing, many of which start with a breathing exercise. I felt she was guiding me.

When the machine blipped a second and third time, my concern was raised. With it stalling, then starting over and over, I began to wonder whether I was getting a larger dose of the rays than prescribed and what additional damage that would do to my body.

I was committed to staying calm. I took as deep a breath as I could, considering I was made immobile by the mask made for me for that very purpose. I mentally stepped back and took note of my thoughts, reminding myself that I did not have the facts and thus it would do me no good to get alarmed based on fearful suppositions.

There are more things, Lucilius, likely to frighten us than there are to crush us; we suffer more often in imagination than in reality.

Seneca (Letters from a Stoic)

I wanted to stay with trust. I did a body inventory to check that my muscles remained relaxed, mindfully untensing my hands placed over my head.

When the LILAC finally stopped, the technician came in to the room to release the mask that tied me to the table.

She said, “Sorry for the delay, ma’am, the machine had some trouble today.

Ummm, yes, what happened?” I asked as I raised myself up to get off the table.

There’s something not working right with this today,” pointing to the head of the LILAC with the glass from where the beams are beamed. Obviously I wasn’t going to get, nor did I really want, a more technical explanation.

But I was still curious. “How do you know I did not get more radiation than I needed?

No, ma’am, that’s not possible. Your specific treatment plan is set with a limit to the dosage you will get in a session. When there’s a mechanical problem, you may get less, but never more. Today you received the right amount of radiation.

I realized shortly after I left the hospital that more could have been done to make sure I, or any patient in these circumstances, don’t panic. It’s based on the old 16th century proverb, “forewarned is forearmed.”

Forewarned, forearmed; to be prepared is half the victory.

Miguel De Cervantes

I experienced the truth of this principle a couple of decades ago. Let me tell you this story.

A good friend of ours, James, had moved from Manila to the countryside to become a fish farmer and live the simple life. Before he had even built a house, he invited my honey and me to come visit. Being the adventurous souls that we were (and are), we accepted. Our mistake, looking back, was going in the hottest month of the year.

We first flew from Manila to the Iloilo airport, on the outskirts of the historic city on Panay Island. From there we made our way to Guimaras, a nearby smaller island province famous for its mangoes, by bus to the port, then by a large bangka (pump boat) ferry across the strait. In the port on the other side, we squeezed into a jam-packed jeepney, the ubiquitous open-aired public transport, an elongated jeep, with our overnight bags, holding instructions for the driver where to drop us off.

By the time the jeepney stopped in what looked to us the middle of nowhere, we’d been traveling over seven hours since leaving our home. We were already hot, sweaty, and weary. Yet happy to see our friend waiting for us. Little did we know the adventure was only starting.

We have a little ways to walk to get to my place,” James informed us with a big smile, as he began to lead us down a path off the road. A ‘little ways’ turned out to be farther than we could ever have imagined.

Each carrying our own bag, under a blazing sun in heat approaching 40°C (that’s over 100°F), we trudged along in single file through a woody area, then on small ridges past one rice field after another. Looking ahead, all I could see were more rice fields right up to the hazy horizon.

After what may have been no more than 30 minutes but felt like hours, I finally yelled to James ahead of us keeping a frisky pace, “Hey James, how much longer?”

“Soon, soon, no worries!” he yelled back.

“No, James, I need to know! I need to know whether your ‘soon’ means five minutes or five hours!”

My point was that by knowing what was ahead, what to expect, I could better prepare my mind to handle the rest of the journey. Forewarned is forearmed.

Our trek came to an end after about another 10 minutes, which was fine, despite arriving at his site completely soaked to the bone. All in all, we were glad we went, and the long hot trek remained but a lesson learned.

Back to the faulty machine, I can’t help but think if the radiation technician had told me—and other patients—that there was a possibility it could stall or stutter that we would then be more psychologically prepared and not feel anxious or concerned when it happens.

This fair forewarning would also serve to strengthen the trust we patients have—and need to have—in the process. And that, I think, is a key element in good patient care.

Can you think of a time when, had you been fully informed on what was coming, you’d have been more prepared to navigate the challenge?

10 comments

  • […] So, this post is for anyone who needs to start radiation and wants to know what it’s like, what to expect. As I’ll be writing from memory, which is always suspect, I invite others with experience to share in the comments. Hopefully there will be enough information here for someone to feel forewarned, hence forearmed. […]

  • So often, I advise this advice to people. It’s stunning how frequently “informed” vs. “uninformed” is the foundation for long standing betrayal…or not. Brilliant way to deal with it, stay concerned and manage your risks.

  • So happy the breathing you remembered helped you to calm your system and go with the flow. The unknown when forced to with it is helps us see our human vulnerabilities as well as our strengths. Well done👌🌸

  • Haha yes. Hiking with friends in unknown territory, we picked up a guide, pointed to a hill and asked “how long.” “One hour daw” came the response as we headed out for it. One hour later–same question, same answer. Another hour, and ditto, the sun was setting, and we camped where we were. So we named the hill we never go to “Onehourdaw.”

    • Oh, that’s precious… what a memory! 🙂 Wonder what your guide was thinking, Jill? 🤔 Especially since you never even got to reach your destination…

  • Yes! Forewarned, forearmed. Sorry that you had to go through that, ‘Cisca. Thanks for sharing the wisdom. Love you.

    – Jennie

By Francisca

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