on the quality of life

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Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.
~ Elisabeth Tova Bailey
(The Sound of a Wild Snail Eating)

It’s hard to believe it’s been five years since I received my radiation proctitis diagnosis on January 3, 2020. It’s been a difficult journey, learning how to live with a chronic illness. I feel like Sisyphus, continually pushing a boulder up a hill, with no reasonable hope for relief.

I’ve learned that radiation proctitis is called pelvic radiation disease by the medical system in the United Kingdom, a much more comprehensive description than we have here in the United States.

In the last few decades radiotherapy was established as one of the best and most widely used treatment modalities for certain tumours. Unfortunately that came with a price. As more people with cancer survive longer an ever increasing number of patients are living with the complications of radiotherapy and have become, in certain cases, difficult to manage. Pelvic radiation disease (PRD) can result from ionising radiation-induced damage to surrounding non-cancerous tissues resulting in disruption of normal physiological functions and symptoms such as diarrhoea, tenesmus, incontinence and rectal bleeding. The burden of PRD-related symptoms, which impact on a patient’s quality of life, has been under appreciated and sub-optimally managed.
~ Kirsten AL Morris & Najib Y Haboubi
(World Journal of Gastrointestinal Surgery, November 27, 2015, “Pelvic radiation therapy: Between delight and disaster”)

Quality of life — how on earth can it be measured?

The necessary low fiber, low fodmap diet is terribly restrictive and makes eating with others and/or eating out in restaurants very awkward. I need to bring my own food.

The unpredictable and painful flare-ups of symptoms keeps me from making too many plans and the plans I do make need to be tentative. It’s frustrating, but the alternative is to never go out and do anything.

In my darkest moments I feel like this steep price paid for cheating death is not worth it.


The Heart asks Pleasure — first —
And then — excuse from Pain —
And then — those little Anodynes
That deaden suffering —

And then — to go to sleep —
And then — if it should be
The will of it’s Inquisitor
The privilege to die —

~ Emily Dickinson
(The Poems of Emily Dickinson, #588)


Coping mechanisms — there are quite a few…

Gathering information and helpful tips from my sympathetic gastroenterologists (both in Connecticut and North Carolina) — I’ve been lucky with that. (On the other hand, the radiologist and oncologist who dished out the radiotherapy were shockingly unsympathetic about the iatrogenic disease this cancer treatment caused.)

Finding the Pelvic Radiation Disease & Radiation Colitis support group on Facebook. It’s validating to know others who understand what it feels like to be living with this.

Working on my original 2020 goal “to take a walk in the woods.” Spending time with nature and capturing its wonders with my camera is very healing.

Reducing stress by practicing yoga, reading poetry and books, and listening to music. (I’m so grateful for the beautiful Chapel Hill Public Library and for my playlists on Spotify!)

Distraction = long hours of family history research.

Learning to say “no” (and trying not to feel guilty about it) when I need to rest and recuperate.

What a long strange trip it’s been these last five years, running concurrently with the pandemic in the beginning, and complicating our move to North Carolina. Most of all, I’m grateful for my husband. Tim lends a patient and supportive listening ear, bearing witness to my pain and struggle. I honestly don’t know how I would have gotten this far without him!

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sunlight in the forest

If you had told me a year ago when I was writing my last Walktober post in Connecticut that a year later I would be writing my next one from a new home far away in North Carolina….. I would not have thought it even remotely possible. But here I am!

This is my contribution to Walktober, this year being hosted by Dawn over at her Change Is Hard blog. See Dawn’s warm invitation to participate here: Walktober 2023.

10.25.23 ~ Carolina North Forest
Chapel Hill & Carrboro, North Carolina

It turns out that 750 acres of woodlands, with numerous trails, belonging to the University of North Carolina, is only about a mile away from our home, as the crow flies. For this, our first visit, we wound up on the deeply shaded Occoneechee Loop. It had plenty of uneven terrain for Tim so it wound up being our longest walk so far this fall.

My camera kept telling me that I needed a flash so I decided to focus on finding pockets of sunlight for my pictures. It wasn’t long before I was feeling more relaxed and mindful, noticing the individual trees and the little things. This forest bath was having a delightfully positive effect on me.

shagbark hickory
can grow over 100 ft tall and live for 350 years
sometimes we could see the sky
leaf trap
hickory leaves?
suspended pine needles and leaves
leaves on a sassafras sapling

On such October days as this, we look about us as though in some new and magic land. The mystical draws close behind the luminous veil. We see the things about us and sense larger meanings just beyond our grasp.
~ Edwin Way Teale
(Circle of the Seasons: The Journal of a Naturalist’s Year)

burl on a loblolly pine
squirrel making a quick exit
another squirrel checking me out
same squirrel taking his nut up, up, up
new growth
sunlight penetrating the deep green forest
another squirrel giving me the tail

We’re looking forward to our next walk in this wonderful forest. It will be nice to see how it changes with at least three of the seasons, as I know hot and humid summertime walks here will be few and far between.