Special Note: I hesitated to share the following post because it might come across as a big dose of self-pity. I know many people quietly contend with chronic illnesses without complaint, but somehow after five years I wanted to acknowledge my daily struggle. In spite of it, though, there is still much in my life that I enjoy, including being with my loving family and the things I usually write about, and take pictures of, in this space. My next offering will be back to the usual.
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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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Thanks so much for sharing. From my perspective, your posts have always been positive – and very much away from your daily struggles. But sometimes, posts like this are necessary just to get it off your chest – and even to share with others. In other words, I didn’t take this as self-pity. Thanks for sharing and best of luck in the days ahead. Cheers to Tim for his support!
Thank you so much for your thoughtful, kind words, Frank!
My pleasure. Verification from an outside source helps.
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I’m so sorry to hear this, Barbara. For what it’s worth, I so enjoy your blog, the pictures and the poetry, especially since your move to my native area. My brother-in-law is going through radiation now and I wonder if I should warn him or if it will cause more worry. I’m wishing that 2025 brings you many walks in the woods. Much love, Anna
Thank you, Anna, I started off the New Year with a good long walk in the woods. My heart goes out to your brother-in-law. Reactions to radiotherapy vary from person to person, depending on the dose and which part of the body is being treated. I hope any side effects or after effects he has will be minimal. 💙
Dear Barbara, your struggle is a difficult one and you have done so much to remain upbeat and vital. I appreciate your strength and courage and expression. Thank goodness for your caring husband and family, the poetry, music and art that warms you, and those beautiful walks in the woods. Best wishes to you in this new year.
Thank you, Jet. I so appreciate your supportive words and well wishes.
I sympathize with your plight, Barbara. How wrenching to realize that there is no cure, but only to ‘manage’ the disease. Your radiologist and oncologist seem to have disregarded the ‘first, do no harm’ part of their vow. Their reaction speaks of their guilt on that count. I have a friend who has extensive pelvic damage from radiation, a horrible side effect.
I’m glad you have the support of groups and family. You have my admiration for your spirit of perseverance. 🙏🏼 💜
It’s surprising to learn how many people are dealing with pelvic damage. My heart goes out to your friend, a fellow sufferer. I am grateful for your sympathy and thank you so much, Eliza, for your encouraging words. 💙
Dear Barbara, I’m so sorry to hear what you’ve been going through all these years. Its good you shared it with us.
So glad Tim found you a doctor who took the time to actually listen to you and order the colonoscopy.
I admire the way you’re facing it (and I do understand those dark days). Much love.
Thank you for understanding, Rosie. You are a very lovely, caring soul and your reassuring words mean a lot to me. I read Your Name Is a Poem before the holidays and was deeply moved. I’m so sorry you lost your daughter and admire your strength of spirit to share your grief so vividly in poetry, including those darkest of days. 💙
much much love to you, dear Barbara – may you feel better day by day. may miracles visit you
Thank you so much, my dearest Leelah. 💙
Barbara –
I read this post and your earlier one as well and my heart aches for what you have gone through since your initial diagnosis. You are a strong woman and through nature, photography, reading, yoga, enjoying music as well as other hobbies like delving into your ancestral past, you have found peace and a means to deal with your condition and go on.
Having lived with my mother who dealt with chronic pain from age 11 to her passing in January 2010, I can empathize with those who suffer from health issues. My mother had a similar instance where a dermatologist minimized her cellulitis pain in her legs and finally told her she needed to consult with an infectious disease doctor as her flare-ups were getting more frequent after years of trivializing her pain, the burning in her legs and only then wrote her a referral as he was retiring. We were disgusted that he said nothing could ever be done and in other words “just suck it up Pauline.” We went to the new doctor who said “why did you believe him – I could have helped you at one time, but not now.”
You know how I feel about doctors – I have no respect for them and because I am older, I know I need to get a physical – going to the dentist, opthalmologist and allergist needs to be supplemented, but I have a difficult time putting my trust in a doctor and your experience solidifies my mindset.
Tim was a godsend in his research to help you find answers. It was perfectly fine to share your thoughts about your condition here – we are like a big family in many respects, sharing life’s trials and tribulations – sadly, some must experience more sadness and ill health than others. Sometimes you have to get things off your chest in writing to get to the next day. Take care Barbara.
I often think of your mother and all she endured in her life, and what a wonderful, supportive daughter you were to her. It helps to know that others have lived with pain. I even think of the years I spent watching my gull with the mangled leg and the lessons he taught me about carrying on in spite of the affliction.
It’s been my experience that there are some very compassionate and competent doctors out there, even if they can be difficult to locate. It’s too bad the careless ones give the good ones a bad reputation. Especially when one is feeling ill and vulnerable it is tragic to end up with one who winds up causing harm. I have the opposite problem to you, I have doctors but I haven’t seen a dentist in decades. What several dentists did to me when I was in my 30s and 40s left me with permanent nerve damage.
Thank you for your support and kind words. Our blogging friends are like a big family!
Thank you for saying that Barbara. We were close before my father walked out, but more so after. I truly thought my mother deserved more after years of pain, an uncaring father who disparaged her for her running between parked cars at age 11 and causing him money for her four-year hospital stay. He had a filthy mouth and then she ended up with my father. Those things were bad but then to pass away from sepsis from a perforated bowel was a painful death she needn’t have endured.
I can see you associating yourself with The Captain – I am sorry you never got to see him the last few years at the shore in Connecticut or to say goodbye.
Yes, some doctors are compassionate and kind – after my mom treated with the first infectious disease doctor, she met his partner who subbed for him one day. She liked him a lot, but he had words with the doctor who owned the practice and left for northern Michigan. So we could not follow him. I’m sorry you had issues with dentists as well and I don’t blame you for your reluctance to go to a dentist. If you take care of your teeth you should be fine. I hope that my being careful and proactive about my health means my reluctance to see a doctor is fine for now.
That is what is special about blogging Barbara. I am alone, but do not feel lonely as a result of friends I have met through blogging.
I do worry about possible future complications like your mother’s perforated bowel. I try to eat low fiber very carefully. The gastroenterologist says the body grows a special kind of blood vessel in the pelvic area in a vain effort to heal the radiation damage. These vessels are more prone to bleeding so I am very aware of keeping a low volume of food passing through so as not to stretch the damaged tissue and start up the bleeding. Not to mention the pain the stretching causes.
Your mother didn’t deserve the treatment she got from her father, her husband, and the cruel doctors. They added insult to injury and poured salt on her wounds. I don’t understand how some people can be so heartless. I never will.
Barbara, I should have thought to tell you that my mom’s perforated bowel was likely the use of strong pain meds and not taking them with food. I sometimes think she was in constant pain so much that she didn’t care anymore. She could not take Tylenol because of the codeine – it made her feel sick and it was that way for years, even right after the two hip replacements and two carpal tunnel surgeries. So she took the higher dosages of Motrin, three or four times a day (for orthopedic, cellulitis and sciatica pain) and they were supposed to be taken with food and the last six months she said “I don’t need food – I’m not hungry” and would take the pill, especially overnight or early in the morning before eating. I would preach to her about it and that it was strong and not to be taken on an empty stomach. I bought little cups of applesauce so if she wanted a pill in the middle of the night, so she was not having something ice cold from the fridge, but she said “no” and was firm about it. Strong meds like this need to be taken with food or else risk issues. She was so careful and prudent about everything else … I think she gave up in the end. Yes, she had her share of heartless people and noncaring doctors in her lifetime and deserved better.
I know it would be difficult for you to follow that diet, always mindful of every bit of food you put into your mouth, the cause and effect. You are stoic about all this Barbara, as was my mother.
Caregiving for a loved one is one of the most challenging jobs in the world, in my opinion. Our emotional ties make even simple, seemingly clear-cut decisions, almost impossible to navigate, especially when we think something is best and the patient doesn’t want to go that way. You, my friend, are one of many unsung heroes who have found themselves carrying such an extraordinary load of hard work, sensitivity and loyalty. And it seems like you didn’t have much support along the way. It’s sad, but I can understand why when someone has grown so weary of a life full of suffering they lose the will to live. It must have been awful for you, to feel so helpless to ease your mom’s suffering. I think you’ll be grieving your loss for a very long time. You went through so much. I am holding you in the Light with my prayers, Linda. 🙏
Thank you for saying this Barbara. Yes, it is hard to watch your loved one suffer when you feel powerless, because you still want to respect their wishes … they, after all, are the one living in that body and should be able to have a say in their own life. The last few weeks were very difficult. I could hear the despair in my mom’s voice and see the listlessness as well. On the Wednesday, four days before she passed away, she asked me to light a candle for her so she could rest in peace. That was very disturbing to me. I went to church and lit a candle for my mom once a month for about five years, then someone went into the Catholic church, which was always open for people to go and light candles at any time. They did some destruction to the alter and stole the boxes where you put money to light candles. The church decided to only open the church for morning mass and Saturday and Sunday services going forward. I started going to the gratefuldotorg site to light my candles and have done so ever since. I make a donation, just as I would have done to light a candle … I like doing that and do so for other occasions like Mother’s Day, birthday and for my grandmother as well. The church has remained locked/closed at non-church-services hours to this date.
I’m so sorry to hear all the difficulties and challenges you’ve faced. It is so rough to have a chronic illness like this. My thoughts are with you. Take care, Sheryl
Thank you so much, Sheryl. Your supportive thoughts and well wishes mean a lot to me.
Barbara, I don’t read this as a pity party at all! You’re certainly entitled to complain after enduring the five years you have (complete with the Pandemic and the relocation). I, too, know something of the low-FODMAP diet, having been diagnosed with IBS a year ago (despite suffering from it for literally decades). The doctors certainly need a course in bedside manner, don’t they? And I agree it’s tough worrying about going out to eat with others (who might not fully understand), fretting over what you can and can’t eat well, and weighing the possibility of chucking it all and staying home. Bless your supportive spouse — it’s not easy for him, having to suffer right along with you. Hang in there!
Thank you, Debbie, for your sympathy and understanding! Since I seem to have checked out of the food department, Tim has taken over his own meal preparations and enjoys cooking, which is a relief to me, not having to think about it. Like you, I’ve had IBS for years, as did my poor grandmother and mother before me. The low fodmap diet brought so much relief and adding the paleo diet (no grains of any kind) helped even more. Now I have to subtract the high fiber foods from those diets, which doesn’t leave me too many options. Thank goodness I love eggs, chicken and fish and can fill up on those!
My heart and prayers are with you, Barbara, and your wonderful Tim. I learned so much from your two posts and am so sorry this has happened to you. I know your love for nature and am thankful you strive to get out as much as you can to absorb the power nature has in healing. Stay strong, stay positive, my friend. 💞
Thank you so much, Donna, for your sympathy, prayers and encouraging words. It’s been a very rough road but I still have many blessings to be grateful for, including blogging friends like you. 💙
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