iCARE: The Cancer Anthology
This anthology was launched on World Cancer Day for and by those with cancer and their caregivers (aka everyone around them).
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
World Cancer Day was February 4th, 2025
CLICK HERE to learn more about the campaign and its organisers. #UNITEDBYUNIQUE #WORLDCANCERDAY
"The new World Cancer Day theme 2025-2027 “United by Unique” places people at the centre of care and their stories at the heart of the conversation."
Everyone has an important role: patients, loved ones, caregivers, friends, neighbours, practitioners, researchers, advocates, and allies.
Table of Contents
**Click the lines on the left of the screen (desktop version) to see the Table of Contents as you scroll through the Anthology. Hover your cursor over a title and click to go to that section.**
Anthology of Cancer Experiences
Our Recommendations of Organisations (including support for children) and Books
Anthology of Cancer Experiences
“Why I’m curating A Cancer Anthology”: iCARE about Cancer.
The authors/creators who are subscribers of the Carer Mentor Community have kindly agreed to let me share a few of their chosen articles to expand this Cancer Anthology. The original World Cancer Day collaborators have shared a short introduction about their cancer experience.
The anthology has evolved to include other writer/creators and their publications. I’ve written short introductions to their publications and shared articles that have resonated with me that I believe will benefit other members of our community.
An intention and disclaimer. The anthology aims to share unique voices and experiences, offer insights and recommendations, and ensure that anyone on a cancer journey (everyone, not just the person with the cancer) knows they are not alone. The Carer Mentor publication aims to network empathy and inspiration; a hub of resources, a portal to other like-minded souls human-ing hard.
The information here is not a substitute for medical advice. Please seek medical support or ask a healthcare professional if you have specific questions about your cancer/symptoms or if you have worries or questions about a loved one/friend.
1. Adult cancer experiences
Breast Cancer
Emma Vivian writes Am I Cured Yet? by Emma Vivian about surviving through the experience of breast cancer beyond that of her friend.
I survived aggressive breast cancer at age 29. My childhood best friend, diagnosed the same year, did not. In this piece, I reflect on how writing helped me overcome survivor’s guilt. The Messy Art of Self-Forgiveness
Five years after losing my breasts at age 30, I reflect on how the loss shaped me and changed the way I view my body. Five Years Ago, I Lost My Breasts
Kristina Adams Waldorf, MD writes After He Said Cancer about how her family continue to navigate through her husband’s breast cancer.
How It Began. This story is the origins of my Substack publication and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis.
That Ribbon. This chapter delves into my emotional response regarding the gendered stereotype of breast cancer and who it leaves out of the narrative.
writes My Big Fat Cancer Plot Twist. She says, 'I’m a British writer diagnosed in December 2024 with triple-negative breast cancer. Writing is how I process things – and I really wanted to create a real-time diary that would also explain cancer honestly, but with humour, too. Chemo, surgery, jargon can all be so intimidating – I’m aiming to humanise it for everyone affected by that bolt-from-the-blue moment that begins with diagnosis.’
So in Meet my Brussels Sprout I share the details of my diagnosis just weeks before Christmas – a tumour in my lymph node the size of a very un-festive Brussels Sprout – and explore how daunted I feel about what lies ahead but also my consultant’s advice to embrace the treatment and keep on running…
And a month later, in So What’s Chemo Really Like? I explain why chemo isn’t like the movies – and why that’s seriously good news! It’s more boring and less disruptive than I expected. I reflect on how the stories we tell shape how we feel about challenges in life - and share the tips and little luxuries that make my weekly infusions more tolerable.
I don’t yet know what the ending will look like – I’m angling for a happy one – but I promise to give you all the twists in my real-life drama.
writes
“2x cancer survivor | writer | fitness enthusiast | Texan living in Alaska”I recommend reading Flat or Bust Coming To Terms with New Me After Cancer. I love her attitude! Victorious Val has recast and vilified cancer into the character of ‘Doug’..an inspired reframe!
Like a typical ex, and after a ten-year separation, Doug returned in 2021. To get you up to speed, Doug is the name I gave to breast cancer in 2011 when I was first diagnosed. After uttering the phrase my cancer for the hundredth time in the first two weeks, it made sense to call him Doug instead. First, I realized cancer wasn’t mine. I did not own it nor did I want to. And second, it didn’t own me either. Over my dead body.
writes Jenny’s Dying to Live. 'Diagnosed with terminal cancer —if you accept the diagnosis but not the prognosis and want to live genuinely and joyfully, we could be friends.'
I’m drawn to Jenny’s writing because I feel deep resonance with each of her articles. Here are the opening lines of her article ‘I’m not a positive person’
“In my writing about living and finding meaning after a devastating diagnosis (in my case, stage 4 breast cancer), my readers often comment with, “You’re such a positive person.”
I’m not actually a positive person. Let me rephrase that — my goal is not to be a positive person.
My goal is to be a mentally healthy person.
Although it sounds great on the surface, “positivity” can easily cross a line into toxicity.”
How Humor Got Me Through My Father’s Death (and my own cancer diagnosis)
Whatever is going on in your life right now, I invite you to remember to laugh. Break out into a broad grin, giggle, snicker, or bust a gut. Laugh til you cry. Pound the arm of the chair you’re sitting in. Life — as long as we have it — is for the living.
Both articles underscore Jenny’s publication premise —if you accept the diagnosis but not the prognosis and want to live genuinely and joyfully, we could be friends.
This feels like the right frame for Hope for those of us experiencing cancer.
writes Life. After. Life. about grief and losing his beloved wife, Heidi, to breast cancer.
"On World Cancer Day, I want to remember this incredible human being who shared her life with me." John generously shares a video his wife made during her chemo session. This link will take you to a note with the video.’
Cervical Cancer
writes WordDance and is a stage 4 cervical cancer survivor AND breast cancer survivor. Two separate cancers six years apart. ‘I have survived divorce, cancer and all the things that come with raising three children on my own. These experiences have taken me into the darkness on a winding journey towards the light.’
I’m sharing the two key articles from her publication where she shares her cancer experiences. I’m merely stating some facts about her experience; I highly recommend reading these articles.
When you read her articles, you’ll appreciate her words' humble wisdom, beauty, dance and poetry.
No Regrets Staring at Death Helped Me See Life Instead
I didn’t just arrive at this goal by chance. On April 7, 2016, I had a life-changing experience that put everything into perspective. I was diagnosed with stage 4 cervical cancer. I was told I could expect to live for two years—up to five at best. The diagnosis knocked the wind right out of me. I remember walking around feeling like a zombie hoarding this terrible secret. I’d look around at strangers in the grocery store and think, They don’t have this burden. They’re so carefree, just going about their day with their whole lives ahead of them.
…Then, in October 2022, a CT scan showed “dense tissue” on one of my breasts. My oncologist insisted that I follow up with a mammogram, the results of which required further testing. In December, a biopsy revealed that it was breast cancer.
On Ephemerality The beauty is in the knowing and accepting the invitation to savour it all.
nonHodgkin’s lymphoma
Jeannie Moloo writes about the gaps in cancer care, her late husband’s experience of nonHodgkin’s lymphoma, and her own experience of Breast cancer.
In Beyond the Cure, I explore how curing and healing, while interconnected, are also distinctly different. The article reflects on my personal experience as the caregiver for my late husband during his struggles with non-Hodgkin's lymphoma and how embracing healing earlier might have allowed us to take greater control of our situation over the 12 years rather than feeling defined by the cancer.
A Critical Gap in Care highlights my top five recommendations for how cancer centers can step up to help make the caregiving experience more manageable and supportive. From communication to emotional resources, these ideas are rooted in my personal journey and what I wish I had access to during my cancer caregiving and treatment years.
Alone in the Shadows is about helping caregivers, patients, and families connect through difficult times.
Lung Cancer
Mel Erwin writes My Lovely Lungs about living truly living with stage 4 lung cancer. Lung cancer is the biggest cancer killer of men and women globally and increasingly affects younger people and non- smokers. Mel lives with va-va-voom and writes about diagnosis, treatment, her cancer tribe, integrative care and above all, love.
I wrote Signs of Life on Planet Cancer in a painful week when we lost two young, beautiful souls from the global, young lung cancer community. I see us all as fellow cancernauts on this planet we did not ask to be landed on. We offer solace, empathy, knowledge and humour to one another.
Doing cancer queerly - Gay, straight, lesbian, transgender, non-binary, bisexual, intersex, queer, no label or all the labels. It is remarkable to be human. Be curious, stay connected, be kind with or without cancer.
Ovarian Cancer
Jennifer Garam writes Rebuilding With Jennifer Garam and Jennifer’s Website & Blog where she writes about her recovery from ovarian cancer.
I’m also a BRCA1-positive ovarian cancer survivor, breast cancer previvor, and women’s health advocate — if you’re interested in or impacted by cancer, or know someone who is, I publish articles for cancer patients and survivors and their caregivers on my personal website’s Cancer Blog, which you can read here.
My Ovarian Cancer Diagnosis: Where It All Began What I remember from the week I was hospitalized and diagnosed with stage 3c ovarian cancer.
Reconnecting With My Purpose After Cancer How I found my purpose after being diagnosed with cancer — and how I'm trying to remain connected to it in survivorship amid the obligations and challenges of day-to-day life.
Colorectal Cancer
Janine Cutting writes about life beyond her colorectal cancer.
Cancer experiences do not usually end after the last treatment. As a matter of fact, many cancer patients go on to develop troublesome mental health symptoms. For me, at the end of a year of radiation, surgery and chemotherapy treatments for stage 3 colorectal cancer, my recovery was just beginning. We must allow recovery time to restore a healthy balance of mind, body and spirit. You can read about my experience here: Recovery Time. Giving Oneself Gentle Permission to Heal and Seek Support is not Easy in our Culture.
Many people develop fears of recurrence after cancer treatments have ended. Learning how to manage these fears in a supportive way is so important, as they can vastly impact well-being and healing. In this article, I write about my own process of overcoming “The Question of Recurrence”
writes about his battle with colorectal cancer and the physical, emotional, and psychological toll it took on his life.
Mikel has a clear mission in publishing his experiences: ‘The purpose of my Substack newsletter is to increase awareness of colorectal cancer and motivate people to get colon cancer screenings beginning in their 40s and continuing into their 80s.’
Here’s a clear call to action in his article: Declining a colonoscopy at age 76 was my tragic mistake.
“Why am I sharing my personal experience with colorectal cancer? Because I hope nobody in my family or among my friends experiences what I have. The same hope extends to people I don’t know.
I hope you will get screened for colorectal cancer regularly if you are over 45 EVEN IF YOU HAVE NO FAMILY HISTORY OF CANCER AND NO SYMPTOMS. And continue screening even after age 75.
You don’t want to experience advanced-stage colorectal cancer. Trust me.”
Prostate Cancer
writes AnthonyFeig's Substack Have You Seen My Prostate? where he says "I'm on the other side of prostate cancer and I write funny stories about that." This is the real deal—simple, incisive (pun intended) and ouch!
When My Man Part Got Sick. A cancer story told entirely in one-syllable words and dumb drawings
I'm a cancer guy? Face to face with two grand misfortunes: An incurable, potentially life-threatening disease, and having to call Blue Cross when they are Experiencing An Unusually High Volume of Calls.
writes about Prostate Cancer and the bits they leave out.
Why did I write Well this is shitty news? Easily answered, because getting diagnosed with prostate cancer is exactly that, shitty. But instead of keeping it all to myself and spending a small fortune on therapy, I thought that I would share the raw, real, and sometimes ridiculous side of this journey. If you or someone you love is facing this, you’re not alone. Give it a read, share it, and let’s talk about it.
The cancer journey doesn’t always end when the initial treatment does, in my case there was regular blood tests, the waiting, and the nagging ‘what ifs.’ I wrote So is 'it' still there? to talk about the part no one prepares you for. If you’ve been there or know someone who has, give it a read, share it, and let’s talk about it.
writes Guy with Cancer
I appreciate how Guy shares all the details of his treatment and chemo. Facts, blood tests and all. For example in Chemo-2, Control, and Knife Crime Guy walks us through the cycle. I appreciated his straightforward confession:
interviewed Guy: Talking prostate cancer with Guy Gratton: Diagnosis, treatment & the road ahead. To get general anaesthetic or not is a question I’ll be posing to my friend! Thanks for this interview, Mark and Guy.This is all a very overt personal mission to be as in control of my life as possible. Yes, absolutely I am trusting the medical profession, taking their advice, attending every appointment, taking the treatment (after doing my own diligence to confirm they are giving me the best possible advice, which so far as I can tell, they all are). But if I just hand myself over to that, and the rest to work demands, my morale and more general health will suffer awfully. I have to control as much of my life as possible - and this last couple of weeks has been all about finding out how best to do that.
In this conversation, I sat down with Guy Gratton, a fellow Substack writer and cancer patient, to talk about his diagnosis, his current treatment plan (including chemotherapy) and what he's learned along the way.
writes “The Wilds of Cancer: A Journey is the working title of my next book. I want to try something different before I publish this one. Over the coming months, I’ll release via Substack selected chapters from the book’s final draft. “
1. Into the Wild The Journey Begins
“My shoulders sagged, and my stomach tightened as he described how the biopsy revealed prostate cancer cells with varied degrees of aggressiveness. One set of cells was not very aggressive. One was medium aggressive. But a very aggressive third set concerned him. And that concerned me.”
30. The Jiggle Water, Water, Every Day. There are lots of interesting details that others may be interested to learn about here.
‘Prone on the radiation machine’s table, I awaited the start of my tenth treatment. As I nestled my feet and calves into the custom-made bean bag designed during a planning session three weeks earlier, I recalled that session, which began when a nurse entered the room, handed me a mug filled with water, and said I needed to “chug the mug.”
I read this article by Rick and it reminded me about some of the dreams my Dad had - different health issues, and not prostate cancer but this eerily resonated. 31. Dreams and Cancer Nighttime Battles
Squamous Cell Carcinoma
writes Everything Is An Emergency. I’m sure you'll be as drawn to her writing as much as I've been since day one. Bess is an emergency medicine doc and writer. She is the wife of Jake Seliger, and mother to the beautiful Athena, who was born shortly after Jake passed from squamous cell carcinoma of the tongue. Bess writes about life, cancer, death, love, health, and healthcare (“health” and “healthcare” being distinct).
Cancer Speaks Its Own Language How we spend our words is how we spend our life. What happens when you find yourself speaking a language the people you're closest to don't understand? Is it possible to bridge the unbridgeable gap?
How to let go: one life ends while another begins I'm seven months pregnant with our daughter as Jake's life comes to a close. How do I walk into an uncertain future without him?
Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.
- writes Along Came Cancer — “a space where I write about what it’s like to juggle life as a mom and a cancer caregiver. This is where the realities of treatment plans, toddler tantrums, and the emotional rollercoaster of both collide.”
I recently connected with Tori, and I’m sharing her articles because THIS is why we need community and connection.
Welcome to Planet Cancer One diagnosis, a whole new planet.
My husband has cancer. The father of my toddler. My best friend since high school.
I’ve read the stories before — young person, rare cancer, blindsided. I always thought that won’t be us. We’re healthy. Informed. Supported. But it was us.
Two weeks ago, we were living a normal life. Toddler chaos. Work deadlines. Groceries. Date nights. Then came a dull pain under his ribs. Maybe gallbladder? Something antibiotics could fix, we thought. But instead, we got tumors — multiple, grapefruit-sized.
And then suddenly, a girl, probably around my age, sat in the chair next to mine. She, too, was there for a biopsy and also had cancer. She looked over at me and, without hesitation, asked, “Do you want a chicken tender?” Before I could answer, her mom—who had been sitting quietly nearby—came over and hugged me. This moment—quiet, odd, unexpectedly intimate—has stuck with me.
2. Child/childhood cancer experiences
Osteogenic Sarcoma
writes Disability and Rizz about her childhood cancer, osteogenic sarcoma.
Nerisa courageously shares her heart wrenching experience about The First Steps Into the Unknown: My Early Days with Childhood Cancer. The Day My World Changed: A Cancer Diagnosis at 10
Leukemia
writes Writing Elizabeth where she chronicles her family's post-cancer life in the aftermath of her daughter's leukemia.
In Reaching Through the Dark, I reflect on my daughter’s leukemia diagnosis and the emotional weight of her treatment. Visiting an art exhibition featuring works by Suleika Jaouad and her mother Anne Francey, I confront my own unresolved grief, finding parallels between their creative expressions of illness and the ways my daughter and I processed our shared nightmare.
In the Shadow of Relapse, I explore the emotional toll of living with the lingering fear of relapse as I navigate the tense hours awaiting my daughter's blood test results. I grapple with both hope and dread, reflecting on the ways humor and love can coexist with the persistent shadow of past trauma.
Rare form of paediatric cancer
writes . “Jacqueline is a freelance writer and essayist located in New York’s Mid-Hudson Valley. Her essays on grief and parenting have appeared in The Washington Post, HuffPost, Modern Loss, Al Jazeera, Pulse, Longreads, and more."
I recently found Jacqueline’s publication. Her article ‘My Daughter's Palliative Care Doctor Gave Me Permission to Hope. Hope, by its very nature, is never false’
When I read your article, Dr Waldman offered a new perspective that soothes the soul. It reconciles my need to be ‘practical’ and allows ‘hope’ to stay with us—less struggle. Both. AND. It’s okay to have both together. It’s paradoxical, yet so wonderfully human– our capacity to know stark facts and still hope.
Jacqueline says, ‘The news of the LA fires inspired me to write this essay and revisit this idea of "false hope" and Dr. Waldman's advice. He was a lightkeeper when I desperately needed one. I hope his words will resonate for readers as much as they did for me.’
“One of the most wonderful and amazing attributes of the human soul is the near impossibility of crushing all hope. This is a gift. I don’t know if it’s God, or nature, or evolution, nor do I care — it is a beautiful and vital part of what makes us human.
We have actual published data that people (patients and parents alike) can (and want to) hear frank, stark information about their prognosis, are able to internalize the fact that they are going to die of their disease, and yet still simultaneously maintain some sort of hope.
This often befuddles clinicians, and I am often called to help because a parent or a child doesn’t “get it.” I find myself in those situations explaining to my colleagues that the ability to simultaneously grasp one’s own mortality while still hoping for something is one of the beautiful paradoxes that makes us human and that allows us to function.” — Dr. Elisha Waldman
I’d encourage everyone to read the full context of these words in Jacqueline’s article.
Neuroblastoma
writes Toeing the Golden Line with Taryn Jarboe. When I read Taryn’s articles, my heartache wrenches, and yet I’m compelled to read on— to sit alongside her and June and to be part of the soulful howl and tragic beauty in Taryn’s words.
Who I Became After My Daughter Was Diagnosed With Cancer “The only thing I can do is be June’s mom. I am just June’s mom.” The introduction paragraph quoted:
Our daughter June began chemotherapy when she was eight-months-old to treat a highly aggressive pediatric cancer called neuroblastoma. After her diagnosis, slowly, slowly gone went my identity. I became no one to society. I still had my nursing license, but I’d stopped working the day we found out June had cancer.
The Days We Spend in the Chair. Bedtime with my children is more of a ritual than a routine. This quote stayed in my mind for a while:
For some awful reason, and one which brings me so much guilt, those objects also remind me that it’s easier to love June at times than it is to love my living children. When I acknowledge that I have been giving June too much of my brain and my body in one day, I return to the beautiful babies in front of me. Sometimes the lines, however, are blurred between them and her. Sometimes their mannerisms are identical to their sister who is gone or one of them gives me a look that’s strikingly June.
Our recommended organisations (UK, USA and Canada).
OUTpatients: The UK’s only LGBTQI+ cancer charity led by LGBTQI+ people affected by cancer
Roy Castle Lung Cancer Foundation: support and information for everyone affected by lung cancer
Oncogene Cancer Research (UK): a charity focused on research for mutation driven lung cancers and information for those affected
EGFR Positive UK: a patient-driven charity committed to providing information and support for EGFR-mutated lung cancer patients and their families.
Maggies (UK): Everyone's home of cancer care
Macmillan Cancer Support (UK). 'Because cancer can affect your life in so many ways, we do whatever it takes to give people the support they need.' Macmillan provides medical, practical, emotional and financial support to cancer patients, their carers, friends and family. Phone: 0808 808 0000
Tackle Prostate Cancer (UK) ‘We are the only patient-led, UK-wide charity representing people with Prostate Cancer and those who care for them’
CarersUK page ‘Caring for Someone with Cancer “A cancer diagnosis can come as a huge shock for family members as well as the person with cancer. To help support those throughout their journey, [Carers UK] have compiled caring tips and information from some leading charities that can offer help.’
BBC Action Line List of UK Organisations for Information and Support ‘If you, or someone you know, have been affected by cancer, the following organisations may be able to help.’
Metavivor (US): METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer.
Young Survival Coalition (US): Young Survival Coalition (YSC) strengthens the community, addresses the unique needs, amplifies the voice and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally.
Stupid Cancer (US): Stupid Cancer, a nonprofit, is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.
The Breasties (US): for those impacted by breast and gynecologic cancers
"You, Me and the Big C" podcast Janine says “I listened to this podcast on my 5 hour drives back and forth to the city for treatment. Dame Deborah James has since passed away from stage 4 colorectal cancer, and she was a beacon of light during my experience. I loved the way she infused so much of her advocacy work with humour.”
The Canadian Cancer Society: “We offer a nationwide support system for people with cancer and their family, friends and caregivers. Access free programs and services that can help manage life with cancer, including our supportive online community, our online and phone-based information specialists and much more.”
For the care of children
Alex's Lemonade Stand We’re changing the lives of children with cancer by funding impactful research, raising awareness, supporting families and empowering everyone to help cure childhood cancer.
St. Baldricks Foundation The St. Baldrick’s Foundation is a volunteer and donor powered charity committed to supporting the most promising research to find cures for childhood cancers and give survivors long and healthy lives.
The Children's Oncology Group The Children’s Oncology Group (COG) a member of the National Cancer Institute (NCI) National Clinical Trials Network (NCTN), is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. COG unites over 12,000 experts in childhood cancer at more than 220 leading children’s hospitals, universities, and cancer centers across the United States, Canada, Australia, New Zealand, and Saudi Arabia in the fight against childhood cancer.
Recommendations by
“Following are resources that may be helpful for parents caring for a child whose parent is dealing with cancer or who has lost a parent to cancer.”:Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.
National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.
The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.
CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.
Other organisations
Macmillan Cancer Support Website. Cancer statistics in the UK
Macmillan Cancer Research studies data and funds research to understand the lived experiences of people living with cancer and to improve outcomes and services.
Our Book Recommendations
Dr Susan Love’s Breast Book By Susan M Love (Jan 1, 1990)
The Year of Magical Thinking. By Joan Didion (Sept 1 2005)
The Untethered Soul by Michael SInger. (Oct 3, 2007)
Human-ing alone is hard. You are not alone.
Do you have an article or podcast episode you’d like to share? Let me know in the comments.
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Thank you!
Thank you so much for creating this, Victoria! It's a brilliant idea, and I'm thrilled to be included.
And who cares about publishing early? It's always good to get the resources out there! 💛🤍✨
Thank you Victoria for curating such a valuable resource for both those with cancer or are accompanying someone who has it. We need a tribe, a crew and crucially we need to talk about cancer. In solidarity,
Mel 🙏🏽