I was dx with colon cancer in 2017. I was lucky, as it was stage 2 when it was discovered. I had abdominal surgery (colon resection), and then everything changed. Though I have been a writer forever, and had already published 6 books traditionally, I wrote & sold a memoir - not about cancer per se, but about how cancer forced me to look at unresolved griefs from my past. I felt like I might never get another chance to do the work of forgiveness and of writing what I really wanted to say, and so I did. And when that book came out, everything changed again. I started drawing again, like I did as a kid, and I wrote & illustrated a book. This month, I'm retiring after 25 years of teaching in higher ed. I feel grateful and lucky every day (even if every day isn't sunshine and unicorns..) ;-) I realize more deeply how we have this one life, this one time, and discernment has become significantly easier. I have given up small talk and meetings and buzz words. I've given up grudges. I've given up the belief that I would never die.
Thank you for sharing your journey. I hope the healing continues and you have many many more years of kindness.
Breast cancer was for other people. Strangers. Distant cousins. A friend of a friend. I clocked in my yearly mammograms and had been relatively healthy my entire life. Cancer was for other people. Not me.
It was December 2018 and I was in a small room finishing getting dressed after yet another yearly mammogram. The nurse was standing outside the door waiting for me. They want to have a closer look, so let’s go into this exam room. The world instantly shifted, and it was like a curtain closed inside my head. I instantly knew. I wasn’t particularly a pessimist or one to go full panic at the drop of the hat. But in that moment, I knew.
Fast forward a blur of a week of tests and biopsies. I got the call the afternoon of December 23, 2018. Stage 1 breast cancer in my left breast and troubling pathology in the right one. They said it’s good we caught it early. They went over my options. I chose nipple-sparing double mastectomy. I sat with a plastic surgeon who showed me all the ways to save my dignity as a woman. It would be a 12-18 month process post mastectomy of stretching my skin so that they could eventually insert implants. I’d get to keep my nipples if I wanted. I was amazed and my husband tried to convince me I’d end up with the tits of my dreams. The thing was I was already enamored with the ones I had. But they had betrayed me and they had to go.
March 2018 they cut out my breasts and the cancer along with them. I would not require chemo or radiation because it hasn’t spread into my lymph nodes yet. I was supposed to be happy. Grateful. Instead I left the hospital bitter and in immense pain despite the drugs. I had drain tubes sticking out of my flesh on both sides and I couldn’t lift my arms for six weeks. I couldn’t wipe my own ass. Completely helpless. I fucking hated that. I felt like a captured animal. I was so angry. I didn’t understand why. No one understood me—so I thought.
I wasn’t healing like I should have. I got an infection and had to go in for two more surgeries. My husband hid in the garage with a bottle. I ran my mother-in-law out of the house in tears back to Missouri. I was pissed at the world.
I was in the shower one afternoon. They had told me not to scrub my chest; just let water run down. It is so vivid in my mind looking down at my blackened right wound where my breast had once been, my own blackened nipple still there, hanging on for dear life. And then just like that, it popped off and fell onto the shower floor, just laying there in the water rivulets. I stood there for I don’t know how long looking down at it. A crucial piece of what I felt identified me sexually and as a woman was now a dead piece a shriveled flesh at my feet. I leaned over, picked it up, examined it. No emotion. Until I realized I was screaming and crumpled on the floor with that fucking nipple clasped in my fist. NOOOOO. It was like a movie scene in my head of Brandon coming in and pulling me out of the shower into his arms while I screamed and howled.
Somehow keeping my nipples and eventually having implants was supposed to make all this be ok. But I had lost. I lost my boobs. I lost my mind. I lost my husband. Yes. All the above. I became a person no one could stand to be around. I thought I’d be able to handle cancer with dignity, but my vanity wouldn’t allow it. I hated everyone and everything. I left my husband, took out a 6- month lease on a place, and then moved back home 2 weeks later. We fought constantly. It was so ugly. He drank and I raged.
The next months eventually led to me filing for divorce. I also underwent 7 more revision surgeries and a total hysterectomy. The hits just would not stop. Those were the absolute worst days of my life. I gained weight. My oncology surgeon scolded me. I’d gotten a 2nd chance at life. A lot of people aren’t as lucky as I was, he’d told me. Lucky. I’d been lucky.
***
It’s now five years later. I’m cancer free. I have D cup implants with one real nipple and one fake one made from my own abdominal skin. They look fine. I have no feeling in them or for them. I wished I’d done it differently now. I wish I’d done a lot differently. My husband and I found our way back to each other. I am so grateful for that. I am now grateful for not having cancer. I can’t say I beat cancer because it beat the absolute hell out of me. But I learned a lot about myself and what is truly important. I am different. What did not kill me DID eventually make me kinder. Am I stronger? I don’t know. I’m definitely wiser and more patient. More compassionate.
To you Paul. Don’t give up. We can have regrets of our past choices, but it doesn’t change anything. It’s what we do going forward. Don’t be a dick like I was. I wasn’t prepared for the mental job it did on me. Keep your head. Much love to you.
and I experienced that pain-sickness-grief-blackness-emptiness all at once. I started a terrible, terrible fight with Jennifer just because I needed to hurt someone else as badly as I was hurting. I vowed never to do that again, and I mean to honor it. But I understand. Truly.
I am so happy you are here. Thank you for sharing this. Much, much love to you, and yours.
I’ve been sick for almost 13 years now. My disease won’t kill me. It also won’t improve. Some days I feel like I can’t go on this way. But I wake up in the morning, put my feet on the floor and do what I can each day anyway.
It’s made me more kind and also more tender. It has forced me to dig into the background of my life and uproot what no longer serves me. It continually forces me to heal what I can in myself, to let go of control (or at least try), and to start learning better how to trust.
I’ve learned a lot and broken a lot and grieved a lot. And I’ve laughed a lot too because sometimes laughing is all that’s left to do.
I hold hope for your healing and full recovery. That your cancer will go and not return. I hope you will sink into the love that surrounds you. Rest. Rejuvenate. Rise. xo
Thank you for this. As much as I have been through recently, I can't imagine long-term illness. I hope you have found ways to alleviate your suffering, and that you find more, and better ways to continue doing so. I hope other people read this, and, like me, send you their love and support.
Same-ish... 14 years now... my disease won't kill me and it won't get better. I saw a few months back that my condition now has a website, whereas before ... it was sorta rare. Makes me wonder if our culture isn't creating the condition... Many mornings, I wake up disappointed I'm still alive, but I live with a dog who wouldn't get walked if I didn't get up and get to it... some days the pain is so intense, the motor skill non-existent ... many days, though, are ... tolerable. Today, I'm ok.. I have today.
Pain is a lot like drink. A person gets drunk, it reveals who they are... a person in pain, also reveals who they are. Maybe people who have gone through pain makes them kinder... maybe... maybe people who go through pain and have support from others as they go through it become kinder. Maybe pain in just one variable.
Our animal friends are the biggest blessing. I am glad that you are continuing to wake each morning, even when it feels like the worst thing. Chronic illness/pain is hard. Keep going. You’re not alone!
Thank you for sharing your experience, and for inviting others to share theirs. I’m a firm believer that connection is the antidote to so many of our struggles- knowing we’re not alone, that we’re understood and supported.
My daughter was diagnosed with leukemia when she was 8 years old, in May 2020. I’m a solo parent to her and my son, and I had to keep working to keep our insurance. I threw everything I had into caring for my kids, seeing my daughter through a brutal 2 1/2 years of treatment, and keeping up with my job, but eventually it all took me under and I fell into a really dark place. I’ve only recently managed to come out of it. My daughter is in remission, turning 13 this fall, heading to middle school, and I feel like I’m sweeping up the last bits of glass off the floor from when everything in our lives felt like it was crashing down on us. It’s slow progress forward but it’s progress. The best thing for us has been connecting with other people, seeing them and feeling seen. My daughter was diagnosed during COVID and the isolation that was layered over our experience made everything so much harder. I write a lot about our cancer years because it feels like now we can finally reach for connection after so many years feeling cut off from the world.
I have two daughters (grown now) so this literally terrifies me. Thank you for sharing. I’m glad you are sweeping up, and finding connection. Keep writing! Looking forward to reading your stacks <3
My husband was diagnosed with incurable cancer in August 2018, just after he turned 50 yrs old. He died in August 2021 (we were married for 13 yrs and our son was 9). I speak with him (out loud when I'm alone) quite often. After he died I quit my job, I became a lingerie model at 55 yrs old, and now I'm writing my memoir and publishing it on Substack. I'm still reinventing myself, some moments are still hard, but I learned how resilient I am.
I couldn’t believe that cancer made me a better person. I think it started with gratitude I felt from the overwhelming kindness of strangers, family, and friends—and people who were acquaintances before turned out to be solid rock friends. I told friends I had for decades and one sent me a card that said, “let’s get a drink when I’m in town.” Drink???? What made me better was when I was getting biopsied and I couldn’t move and the tears were pouring down my face. I was crying harder than maybe I ever had but completely silent. The nurse touched my arm and spoke words I don’t remember—maybe she prayed—and I felt overwhelmed by her kindness. A tear is running down my face with the recollection. The crocheted prayer blanket they gave each patient made by different local people—the kindness. The generosity of notes, cards, and phone calls from people I didn’t always know that well. Each brought tears to my eyes. I knew how much these things meant and I became less shy or really less lazy about acknowledging, calling, recognizing people’s pain. I am not as good as I should be but I think back to before and I know in the deepest part of me I am less selfish. I know how
good people can be and I want to be like they were to me.
Paul, this is beautiful and brave and a wonderful opportunity for others to show kindness. I wish you well in your recovery.
I had cervical cancer many years ago and still remember the day I got the news, on the phone when I was home alone. Fuck cancer, screaming and ugly crying, as I recall. Then I had a few drinks, and a few more, which is how I handled everything back then. The cancer got fixed but not the drinking.
The next couple of years were the kind of hell I hope readers never experience. By the end, I no longer recognised the person in the bottom of my glass. I screwed up my marriage and my job and my kids hated me. I put the bottle down and haven’t picked up since.
I’m not that person now, or the one before. It was hard and humbling, and some days I was really mean and thirsty, but one day, one step at a time, the craving left me and I was able to learn that, if I ask for help, I will get it, if I use the help I’m given, I will not look back in anger or regret. If I am open, honest and, above all, kind, I will be given the gift of a more loving attitude towards myself and thereby become fit to pass that blessing on to others.
The fear and anxiety (and sometimes drinking) are a common thread in these stories, and I hope people realize how many others have gone through similar things. Thank you for sharing your story.
One of our daughters died at birth. I thought I would die then. I wanted to die. But I didn’t. And our other children continued to grow and grow. We have all become kinder over the past 20 years. I marvel at my adult children’s compassion for one another and for the earth and for others. I still long for Grace. I still grieve. I still miss her. But I am kinder now. To everyone around me. Fragility and kindness walk hand in hand
That’s how I first read “fragility and kindness”, which feels even more apt from what you say. I’m so sorry about your daughter, Grace, who was so perfectly named, reflecting you yourself.
Thank you for sharing. I quit drinking too about a year ago. After finding out I had a brain tumor. I had surgery and it turns out it’s brain cancer. Still processing a lot but being more open now it’s finally helping heal. Life is a wild ride but I’m still here FEELING all without numbing myself with alcohol. I can see some light at the end of the tunnel but grateful for family and friends and sun and flowers. Wishing you a good recovery and know that we are building some inner strength with these experiences. May you live with ease. Hugs to you.
Hi Paul, thank you for sharing. I hope the pain is easing/more easily controlled today (Day 7 post surgery.) How are you feeling?
You can read more about my caregiving journey on my website - 2015 I started helping my Mum care for my Dad whose myriad of health issues was destabilised by a major hospitalisation. During the medical leave supporting them in 2016 he was diagnosed with bladder cancer...the rollercoaster incl. vascular dementia, destabilised heart failure, RA, was complicated by 2 bladder resections, treatment etc it was hellish to say the least...In that hell Mum was diagnosed with 2 separate primaries. 16 days after Dad's funeral in Jan 2020, she had the first of 2 surgeries. For us 2020 was Cancer surgeries, chemo, radiotherapy...then regrowth, then treatment..and continues..
That's the VERY VERY short version. I'll be writing more about our rollercoaster with Dad. May I ask if you've friends/family support during these tough times? Would you invite caregiver reflections as well? I'll be asking for these stories as part of my Website Mission. Sending strength and support.
I first learned about chronic pain when I was late in a pregnancy with a very big baby, who pinched a nerve. Nerve pain is unlike any other kind of pain--electric, unremitting, & while I'm not sure any pain meds (which I avoid) alleviate it, I couldn't take anything because I was pregnant. Chronic pain is wearying, & one of the ways you learn to recognize it in others is in their voice. I heard it in my own voice. Bob Watson, a poet-colleague who retired before you came to UNCG, suffered chronic pain in one leg for a long time before he died, & I recognized his pain because I'd heard it in my own voice years before. I was lucky in that I knew my pain would subside once the baby was born--3.5 months later--though I didn't know that the leg with the bad nerve would be weakened forever & in later years unable to bear weight & become a concern for balance. Yes, that made me kinder. I learned to hear not just what people said but the sound of pain inside a voice. Maybe it could be any kind of pain, chronic physical pain, psychological pain, but it has a distinctive sound, and I hear it. That was a long time ago, of course. Since then I've had several cancers, the first a melanoma I wasn't expecting, & while I was waiting for the doctor to come back inside his sterile office, I thought "So this is how you die. It's so banal." That one was a kind-of-nothing melanoma, but the word was scary. Since I've had much more serious surgeries for melanomas & a number of bad mammograms. Covid (long covid) hit me early & wrecked my health forever--it attacked my digestive system & there's almost nothing I can eat. Has multiple organ failure or any of those subsequent things made me kinder? Certainly they've made me kinder to my husband, who has had to take care of me in a multi-story house through broken bones as well as serious illnesses, but have they made me kinder to others? I don't know. Does the scariness of aging--which is where I'm at now--make me kinder? I don't know. But I do know that I learned while relatively young to recognize pain in others without their having to mention it, & that made a huge difference in the way I respond to people ever after.
Perhaps this deserves a longer essay. Obviously, pain has been on my mind a lot recently, since I've been in a lot of pain, and am now very interested in exploring the ways we react when facing pain. Chronic pain scares me on a level I don't really want to admit to, because I am afraid I would not handle it well. Maybe "capacity for kindness" is a better phrase. Anyway, you've always been very kind to me <3
Thank you for sharing this, Paul. Your words always offer me such a hopeful reminder tat I'm not alone.
I've survived through a life of disability, which has meant years spent in hospital, 36 surgeries so far and countless other procedures.
I have also survived years of abuse and emotional neglect and gaslighting and I am still trying to survive through the intense complex trauma that all of those experiences left me with, which is the main purpose of my writing. To help me survive all of this.
To date, I have given up drugs, drinking and physical self harm.
I am hoping to be able to give up the emotional and mental self harm at some point. It's a work in progress.
I've survived the loss of my grandparents, who were my favourite people in the world and my main source of unconditional love and care and also my step dad, who was only in my life for 10 years, but it felt like he had always been my dad. It's only been a year since he died and I still feel like I only just got the call.
I am sending you so much love and empathy through your own survival journey. You're not alone. ❤
I gave up drinking last December. I wasn’t too far gone, but I was starting down a dark and narrow path. I still get depressed, but I’ve finally let the meds do the work they’re supposed to.
Hey Paul, Nice to read your piece and how you felt in reading the comments. These challenging stories that some of us live through are incredibly difficult to write about, let alone admit out loud. So hearing that you’re openly asking for pieces to read, and share, is quite a brave and bold move.
Indeed I felt very alone (well, still do to some extent) about people going through similar things, so in some morbid way, it’s “nice” to know I’m not alone.
Harking back to my comment yesterday, you can read more about my background here—I don’t go fully into it, I have a few others that touch on the specifics, but this one looks at the price I paid to still be here.
Things are so much better, 4 years later, and I intend to share more on how I put myself back together, but I also know that pieces like this one below are so necessary in educating others about what happens during treatment, beyond the bald head:
Have you found any people or groups going through what you are? One of the rare good things for me that came out of the early days of the Covid pandemic was that groups in different geographical areas became accessible virtually, and my wife found for me a group for women specifically with my situation, with the long term effects of radiation for the specific form of cancer I had decades ago. It’s made me feel so much less lonely and isolated, and also introduced me to a FB group where we share with each other resources and experiences. I hope you find similar, if you haven’t already, if that’s something that would help alleviate some of your suffering. I’d like to read your Substack and I’m sorry I can’t as I’m on a very limited income. My very best to you.
Thanks for reaching out. I'm glad to hear that you/your partner found a way for you to connect with others with similar experiences. Indeed it certainly helps put one's mind at ease. I hadn't had much contact with people who had the same cancer as myself, though (un)fortunately some of my friends have also had (different forms of) cancer. So in that regard, I'm thankful that I have them to discuss things with/reach out to when I'm feeling a certain way.
I've also found that writing profusely about my experiences has helped me process them in a way that I can better my circumstances, both physically and mentally. If you want to subscribe, please go ahead--my (podcast) narrations on some stories are always freely available, and each new story is free for the first 3 weeks post-release. I still have a lot to share that you may find worth a read.
Good luck, Paul! I’m one of the first generation of long-term survivors, having had Hodgkin’s lymphoma in 1974 when a teenager, with effects from radiation treatment, including another cancer at 43, thyroid, lung and heart disease. But that’s only part of who I am; I’m also a creative writing and poetry teacher to children and adults who are trying to heal from their own trauma, a writer, a partner to my beautiful wife, a sister, a friend, and many other things. Being around children, writing, teaching, reading, being in nature, all of these things remind me that love is the most important thing of all, the force of life that connects us all, something I realized with my second cancer. I will most likely die before what should have been my time, as doctors say that people who had Hodgkin’s in youth will have their lives cut 10-15 years short, and that we suffer from accelerated aging. But as my sister taught me something she herself learned, “This is my life; there’s no life that I was supposed to have”, and I try to remember this and that illness is but one theme in my biography. Writing really helps, as I see from your wonderful Substack that you know, and I wish you much love, support and wellbeing. If you’re interested, I wrote about my experience with cancer and what I learned here: https://www.margoperin.com/the-body-geographic.html.
I was dx with colon cancer in 2017. I was lucky, as it was stage 2 when it was discovered. I had abdominal surgery (colon resection), and then everything changed. Though I have been a writer forever, and had already published 6 books traditionally, I wrote & sold a memoir - not about cancer per se, but about how cancer forced me to look at unresolved griefs from my past. I felt like I might never get another chance to do the work of forgiveness and of writing what I really wanted to say, and so I did. And when that book came out, everything changed again. I started drawing again, like I did as a kid, and I wrote & illustrated a book. This month, I'm retiring after 25 years of teaching in higher ed. I feel grateful and lucky every day (even if every day isn't sunshine and unicorns..) ;-) I realize more deeply how we have this one life, this one time, and discernment has become significantly easier. I have given up small talk and meetings and buzz words. I've given up grudges. I've given up the belief that I would never die.
Thank you for sharing your journey. I hope the healing continues and you have many many more years of kindness.
Laraine, I can relate to this and how these experiences can be transformative.
Breast cancer was for other people. Strangers. Distant cousins. A friend of a friend. I clocked in my yearly mammograms and had been relatively healthy my entire life. Cancer was for other people. Not me.
It was December 2018 and I was in a small room finishing getting dressed after yet another yearly mammogram. The nurse was standing outside the door waiting for me. They want to have a closer look, so let’s go into this exam room. The world instantly shifted, and it was like a curtain closed inside my head. I instantly knew. I wasn’t particularly a pessimist or one to go full panic at the drop of the hat. But in that moment, I knew.
Fast forward a blur of a week of tests and biopsies. I got the call the afternoon of December 23, 2018. Stage 1 breast cancer in my left breast and troubling pathology in the right one. They said it’s good we caught it early. They went over my options. I chose nipple-sparing double mastectomy. I sat with a plastic surgeon who showed me all the ways to save my dignity as a woman. It would be a 12-18 month process post mastectomy of stretching my skin so that they could eventually insert implants. I’d get to keep my nipples if I wanted. I was amazed and my husband tried to convince me I’d end up with the tits of my dreams. The thing was I was already enamored with the ones I had. But they had betrayed me and they had to go.
March 2018 they cut out my breasts and the cancer along with them. I would not require chemo or radiation because it hasn’t spread into my lymph nodes yet. I was supposed to be happy. Grateful. Instead I left the hospital bitter and in immense pain despite the drugs. I had drain tubes sticking out of my flesh on both sides and I couldn’t lift my arms for six weeks. I couldn’t wipe my own ass. Completely helpless. I fucking hated that. I felt like a captured animal. I was so angry. I didn’t understand why. No one understood me—so I thought.
I wasn’t healing like I should have. I got an infection and had to go in for two more surgeries. My husband hid in the garage with a bottle. I ran my mother-in-law out of the house in tears back to Missouri. I was pissed at the world.
I was in the shower one afternoon. They had told me not to scrub my chest; just let water run down. It is so vivid in my mind looking down at my blackened right wound where my breast had once been, my own blackened nipple still there, hanging on for dear life. And then just like that, it popped off and fell onto the shower floor, just laying there in the water rivulets. I stood there for I don’t know how long looking down at it. A crucial piece of what I felt identified me sexually and as a woman was now a dead piece a shriveled flesh at my feet. I leaned over, picked it up, examined it. No emotion. Until I realized I was screaming and crumpled on the floor with that fucking nipple clasped in my fist. NOOOOO. It was like a movie scene in my head of Brandon coming in and pulling me out of the shower into his arms while I screamed and howled.
Somehow keeping my nipples and eventually having implants was supposed to make all this be ok. But I had lost. I lost my boobs. I lost my mind. I lost my husband. Yes. All the above. I became a person no one could stand to be around. I thought I’d be able to handle cancer with dignity, but my vanity wouldn’t allow it. I hated everyone and everything. I left my husband, took out a 6- month lease on a place, and then moved back home 2 weeks later. We fought constantly. It was so ugly. He drank and I raged.
The next months eventually led to me filing for divorce. I also underwent 7 more revision surgeries and a total hysterectomy. The hits just would not stop. Those were the absolute worst days of my life. I gained weight. My oncology surgeon scolded me. I’d gotten a 2nd chance at life. A lot of people aren’t as lucky as I was, he’d told me. Lucky. I’d been lucky.
***
It’s now five years later. I’m cancer free. I have D cup implants with one real nipple and one fake one made from my own abdominal skin. They look fine. I have no feeling in them or for them. I wished I’d done it differently now. I wish I’d done a lot differently. My husband and I found our way back to each other. I am so grateful for that. I am now grateful for not having cancer. I can’t say I beat cancer because it beat the absolute hell out of me. But I learned a lot about myself and what is truly important. I am different. What did not kill me DID eventually make me kinder. Am I stronger? I don’t know. I’m definitely wiser and more patient. More compassionate.
To you Paul. Don’t give up. We can have regrets of our past choices, but it doesn’t change anything. It’s what we do going forward. Don’t be a dick like I was. I wasn’t prepared for the mental job it did on me. Keep your head. Much love to you.
Ann, I wrote this after my last surgery https://paulcrenshaw.substack.com/p/fell-on-black-days
and I experienced that pain-sickness-grief-blackness-emptiness all at once. I started a terrible, terrible fight with Jennifer just because I needed to hurt someone else as badly as I was hurting. I vowed never to do that again, and I mean to honor it. But I understand. Truly.
I am so happy you are here. Thank you for sharing this. Much, much love to you, and yours.
I’ve been sick for almost 13 years now. My disease won’t kill me. It also won’t improve. Some days I feel like I can’t go on this way. But I wake up in the morning, put my feet on the floor and do what I can each day anyway.
It’s made me more kind and also more tender. It has forced me to dig into the background of my life and uproot what no longer serves me. It continually forces me to heal what I can in myself, to let go of control (or at least try), and to start learning better how to trust.
I’ve learned a lot and broken a lot and grieved a lot. And I’ve laughed a lot too because sometimes laughing is all that’s left to do.
I hold hope for your healing and full recovery. That your cancer will go and not return. I hope you will sink into the love that surrounds you. Rest. Rejuvenate. Rise. xo
Thank you for this. As much as I have been through recently, I can't imagine long-term illness. I hope you have found ways to alleviate your suffering, and that you find more, and better ways to continue doing so. I hope other people read this, and, like me, send you their love and support.
Same-ish... 14 years now... my disease won't kill me and it won't get better. I saw a few months back that my condition now has a website, whereas before ... it was sorta rare. Makes me wonder if our culture isn't creating the condition... Many mornings, I wake up disappointed I'm still alive, but I live with a dog who wouldn't get walked if I didn't get up and get to it... some days the pain is so intense, the motor skill non-existent ... many days, though, are ... tolerable. Today, I'm ok.. I have today.
Pain is a lot like drink. A person gets drunk, it reveals who they are... a person in pain, also reveals who they are. Maybe people who have gone through pain makes them kinder... maybe... maybe people who go through pain and have support from others as they go through it become kinder. Maybe pain in just one variable.
Our animal friends are the biggest blessing. I am glad that you are continuing to wake each morning, even when it feels like the worst thing. Chronic illness/pain is hard. Keep going. You’re not alone!
Thank you for sharing your experience, and for inviting others to share theirs. I’m a firm believer that connection is the antidote to so many of our struggles- knowing we’re not alone, that we’re understood and supported.
My daughter was diagnosed with leukemia when she was 8 years old, in May 2020. I’m a solo parent to her and my son, and I had to keep working to keep our insurance. I threw everything I had into caring for my kids, seeing my daughter through a brutal 2 1/2 years of treatment, and keeping up with my job, but eventually it all took me under and I fell into a really dark place. I’ve only recently managed to come out of it. My daughter is in remission, turning 13 this fall, heading to middle school, and I feel like I’m sweeping up the last bits of glass off the floor from when everything in our lives felt like it was crashing down on us. It’s slow progress forward but it’s progress. The best thing for us has been connecting with other people, seeing them and feeling seen. My daughter was diagnosed during COVID and the isolation that was layered over our experience made everything so much harder. I write a lot about our cancer years because it feels like now we can finally reach for connection after so many years feeling cut off from the world.
I have two daughters (grown now) so this literally terrifies me. Thank you for sharing. I’m glad you are sweeping up, and finding connection. Keep writing! Looking forward to reading your stacks <3
You have been through so much. Sending much love to you, and to your daughter and family.
My husband was diagnosed with incurable cancer in August 2018, just after he turned 50 yrs old. He died in August 2021 (we were married for 13 yrs and our son was 9). I speak with him (out loud when I'm alone) quite often. After he died I quit my job, I became a lingerie model at 55 yrs old, and now I'm writing my memoir and publishing it on Substack. I'm still reinventing myself, some moments are still hard, but I learned how resilient I am.
Thank you for sharing this. Keep reinventing until you're happy <3
I couldn’t believe that cancer made me a better person. I think it started with gratitude I felt from the overwhelming kindness of strangers, family, and friends—and people who were acquaintances before turned out to be solid rock friends. I told friends I had for decades and one sent me a card that said, “let’s get a drink when I’m in town.” Drink???? What made me better was when I was getting biopsied and I couldn’t move and the tears were pouring down my face. I was crying harder than maybe I ever had but completely silent. The nurse touched my arm and spoke words I don’t remember—maybe she prayed—and I felt overwhelmed by her kindness. A tear is running down my face with the recollection. The crocheted prayer blanket they gave each patient made by different local people—the kindness. The generosity of notes, cards, and phone calls from people I didn’t always know that well. Each brought tears to my eyes. I knew how much these things meant and I became less shy or really less lazy about acknowledging, calling, recognizing people’s pain. I am not as good as I should be but I think back to before and I know in the deepest part of me I am less selfish. I know how
good people can be and I want to be like they were to me.
"I am not as good as I should be..." Same here. That's the work I need to do next. Thank you for sharing this. <3
Beautiful!
Paul, this is beautiful and brave and a wonderful opportunity for others to show kindness. I wish you well in your recovery.
I had cervical cancer many years ago and still remember the day I got the news, on the phone when I was home alone. Fuck cancer, screaming and ugly crying, as I recall. Then I had a few drinks, and a few more, which is how I handled everything back then. The cancer got fixed but not the drinking.
The next couple of years were the kind of hell I hope readers never experience. By the end, I no longer recognised the person in the bottom of my glass. I screwed up my marriage and my job and my kids hated me. I put the bottle down and haven’t picked up since.
I’m not that person now, or the one before. It was hard and humbling, and some days I was really mean and thirsty, but one day, one step at a time, the craving left me and I was able to learn that, if I ask for help, I will get it, if I use the help I’m given, I will not look back in anger or regret. If I am open, honest and, above all, kind, I will be given the gift of a more loving attitude towards myself and thereby become fit to pass that blessing on to others.
The fear and anxiety (and sometimes drinking) are a common thread in these stories, and I hope people realize how many others have gone through similar things. Thank you for sharing your story.
One of our daughters died at birth. I thought I would die then. I wanted to die. But I didn’t. And our other children continued to grow and grow. We have all become kinder over the past 20 years. I marvel at my adult children’s compassion for one another and for the earth and for others. I still long for Grace. I still grieve. I still miss her. But I am kinder now. To everyone around me. Fragility and kindness walk hand in hand
Oh wow. Thank you for sharing this. <3
Beautiful, “fragility and grace”.
That’s how I first read “fragility and kindness”, which feels even more apt from what you say. I’m so sorry about your daughter, Grace, who was so perfectly named, reflecting you yourself.
Thank you for sharing. I quit drinking too about a year ago. After finding out I had a brain tumor. I had surgery and it turns out it’s brain cancer. Still processing a lot but being more open now it’s finally helping heal. Life is a wild ride but I’m still here FEELING all without numbing myself with alcohol. I can see some light at the end of the tunnel but grateful for family and friends and sun and flowers. Wishing you a good recovery and know that we are building some inner strength with these experiences. May you live with ease. Hugs to you.
Good luck, I’m very touched by this.
Hi Paul, thank you for sharing. I hope the pain is easing/more easily controlled today (Day 7 post surgery.) How are you feeling?
You can read more about my caregiving journey on my website - 2015 I started helping my Mum care for my Dad whose myriad of health issues was destabilised by a major hospitalisation. During the medical leave supporting them in 2016 he was diagnosed with bladder cancer...the rollercoaster incl. vascular dementia, destabilised heart failure, RA, was complicated by 2 bladder resections, treatment etc it was hellish to say the least...In that hell Mum was diagnosed with 2 separate primaries. 16 days after Dad's funeral in Jan 2020, she had the first of 2 surgeries. For us 2020 was Cancer surgeries, chemo, radiotherapy...then regrowth, then treatment..and continues..
That's the VERY VERY short version. I'll be writing more about our rollercoaster with Dad. May I ask if you've friends/family support during these tough times? Would you invite caregiver reflections as well? I'll be asking for these stories as part of my Website Mission. Sending strength and support.
Sending strength and support to you, too. It’s so hard for caregivers, and you deserve all the kudos for what you do.
Thanks, Paul - bless you for that.
I first learned about chronic pain when I was late in a pregnancy with a very big baby, who pinched a nerve. Nerve pain is unlike any other kind of pain--electric, unremitting, & while I'm not sure any pain meds (which I avoid) alleviate it, I couldn't take anything because I was pregnant. Chronic pain is wearying, & one of the ways you learn to recognize it in others is in their voice. I heard it in my own voice. Bob Watson, a poet-colleague who retired before you came to UNCG, suffered chronic pain in one leg for a long time before he died, & I recognized his pain because I'd heard it in my own voice years before. I was lucky in that I knew my pain would subside once the baby was born--3.5 months later--though I didn't know that the leg with the bad nerve would be weakened forever & in later years unable to bear weight & become a concern for balance. Yes, that made me kinder. I learned to hear not just what people said but the sound of pain inside a voice. Maybe it could be any kind of pain, chronic physical pain, psychological pain, but it has a distinctive sound, and I hear it. That was a long time ago, of course. Since then I've had several cancers, the first a melanoma I wasn't expecting, & while I was waiting for the doctor to come back inside his sterile office, I thought "So this is how you die. It's so banal." That one was a kind-of-nothing melanoma, but the word was scary. Since I've had much more serious surgeries for melanomas & a number of bad mammograms. Covid (long covid) hit me early & wrecked my health forever--it attacked my digestive system & there's almost nothing I can eat. Has multiple organ failure or any of those subsequent things made me kinder? Certainly they've made me kinder to my husband, who has had to take care of me in a multi-story house through broken bones as well as serious illnesses, but have they made me kinder to others? I don't know. Does the scariness of aging--which is where I'm at now--make me kinder? I don't know. But I do know that I learned while relatively young to recognize pain in others without their having to mention it, & that made a huge difference in the way I respond to people ever after.
Perhaps this deserves a longer essay. Obviously, pain has been on my mind a lot recently, since I've been in a lot of pain, and am now very interested in exploring the ways we react when facing pain. Chronic pain scares me on a level I don't really want to admit to, because I am afraid I would not handle it well. Maybe "capacity for kindness" is a better phrase. Anyway, you've always been very kind to me <3
Thank you for sharing this, Paul. Your words always offer me such a hopeful reminder tat I'm not alone.
I've survived through a life of disability, which has meant years spent in hospital, 36 surgeries so far and countless other procedures.
I have also survived years of abuse and emotional neglect and gaslighting and I am still trying to survive through the intense complex trauma that all of those experiences left me with, which is the main purpose of my writing. To help me survive all of this.
To date, I have given up drugs, drinking and physical self harm.
I am hoping to be able to give up the emotional and mental self harm at some point. It's a work in progress.
I've survived the loss of my grandparents, who were my favourite people in the world and my main source of unconditional love and care and also my step dad, who was only in my life for 10 years, but it felt like he had always been my dad. It's only been a year since he died and I still feel like I only just got the call.
I am sending you so much love and empathy through your own survival journey. You're not alone. ❤
Thank you for sharing, and much love to you <3
I can't begin to measure how my life changed after getting sober in 1990. Thank you for sharing your story. Sobriety was already on my mind after reading today's "Short Reads" by Amie McGraham: https://www.short-reads.org/fathers-day/?ref=short-reads-newsletter
<3 <3 <3
I gave up drinking last December. I wasn’t too far gone, but I was starting down a dark and narrow path. I still get depressed, but I’ve finally let the meds do the work they’re supposed to.
Hey Paul, Nice to read your piece and how you felt in reading the comments. These challenging stories that some of us live through are incredibly difficult to write about, let alone admit out loud. So hearing that you’re openly asking for pieces to read, and share, is quite a brave and bold move.
Indeed I felt very alone (well, still do to some extent) about people going through similar things, so in some morbid way, it’s “nice” to know I’m not alone.
Harking back to my comment yesterday, you can read more about my background here—I don’t go fully into it, I have a few others that touch on the specifics, but this one looks at the price I paid to still be here.
Things are so much better, 4 years later, and I intend to share more on how I put myself back together, but I also know that pieces like this one below are so necessary in educating others about what happens during treatment, beyond the bald head:
https://remainingmark.substack.com/p/paying-the-chemical-price-for-life
Have you found any people or groups going through what you are? One of the rare good things for me that came out of the early days of the Covid pandemic was that groups in different geographical areas became accessible virtually, and my wife found for me a group for women specifically with my situation, with the long term effects of radiation for the specific form of cancer I had decades ago. It’s made me feel so much less lonely and isolated, and also introduced me to a FB group where we share with each other resources and experiences. I hope you find similar, if you haven’t already, if that’s something that would help alleviate some of your suffering. I’d like to read your Substack and I’m sorry I can’t as I’m on a very limited income. My very best to you.
Hi Margo,
Thanks for reaching out. I'm glad to hear that you/your partner found a way for you to connect with others with similar experiences. Indeed it certainly helps put one's mind at ease. I hadn't had much contact with people who had the same cancer as myself, though (un)fortunately some of my friends have also had (different forms of) cancer. So in that regard, I'm thankful that I have them to discuss things with/reach out to when I'm feeling a certain way.
I've also found that writing profusely about my experiences has helped me process them in a way that I can better my circumstances, both physically and mentally. If you want to subscribe, please go ahead--my (podcast) narrations on some stories are always freely available, and each new story is free for the first 3 weeks post-release. I still have a lot to share that you may find worth a read.
Wish you well, and take care!
Good luck, Paul! I’m one of the first generation of long-term survivors, having had Hodgkin’s lymphoma in 1974 when a teenager, with effects from radiation treatment, including another cancer at 43, thyroid, lung and heart disease. But that’s only part of who I am; I’m also a creative writing and poetry teacher to children and adults who are trying to heal from their own trauma, a writer, a partner to my beautiful wife, a sister, a friend, and many other things. Being around children, writing, teaching, reading, being in nature, all of these things remind me that love is the most important thing of all, the force of life that connects us all, something I realized with my second cancer. I will most likely die before what should have been my time, as doctors say that people who had Hodgkin’s in youth will have their lives cut 10-15 years short, and that we suffer from accelerated aging. But as my sister taught me something she herself learned, “This is my life; there’s no life that I was supposed to have”, and I try to remember this and that illness is but one theme in my biography. Writing really helps, as I see from your wonderful Substack that you know, and I wish you much love, support and wellbeing. If you’re interested, I wrote about my experience with cancer and what I learned here: https://www.margoperin.com/the-body-geographic.html.
Thank you for sharing. Beautiful <3
And you!