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April is Bowel Cancer Awareness Month in the UK

In 2025, I curated an anthology sharing people’s experiences. I also shared how I had a test and a colonoscopy done because I was worried about some abdominal symptoms and my familial history of cancer. Thankfully, I was given the all clear.

The colonoscopy wasn’t painful. I chose not to be sedated, so I was awake the whole time. Drinking the laxative is the difficult part, and even that’s easy if you’re prepared.

If you’re a colonoscopy newbie, this article’s for you

Table of Contents

1. Experiences

2. Pre-Colonoscopy dietary guides and bowel preparation

3. Examples of laxative preparations you may be asked to take

4. VLOG experiences demystifying the “Colon cleanse”; taking the strong laxative to clear the bowel.

5. Quotes I’ve heard from other people’s colonoscopy experiences

6. After the colonoscopy: 2 key essentials

7. What worked for me. Check with your doctor and nurses during your procedure

8. Support Organisations

Disclaimer: Please consult your doctor and nurses about your procedure. This is for awareness and information only. I’m not a doctor or medically trained and cannot advise you on what’s right for you.

Spread the word - if you’re having these symptoms, ask your doctor about a qFIT test or if a colonoscopy is right for you.

1. Articles of personal experiences

• “Listening to your gut could save your life...In this article I talk about inflammatory bowel disease (IBD), colonoscopies and everything in-between.” By

• “Ready to make Katie Couric proud. It’s that time. My First Colonoscopy is next week. by

• ‘Do I have cancer?’ Navigating to Clarity. A summary of my journey and recommendations. By Victoria

• Bowel Cancer Awareness Month (UK). What are the symptoms? How do I get tested? Is there a screening programme? By Liz Arginteanu David Barrow Janine Cutting Kirsten Davidson Mikel K Miller Isabelle Plante and myself.

2. Pre-Colonoscopy dietary guides and bowel preparation

• Shopping list for your colonoscopy prep. “A shopping list for food, drinks, and other items you will need during your colonoscopy prep will help you have a successful prep.” By Colorectal Cancer Alliance

• Sample 6 Day Colonoscopy Prep Guide By Colorectal Cancer Alliance

• 5 days before your colonoscopy. Colonoscopy diet advice and bowel preparation by Guy’s and St. Thomas’ NHS Foundation Trust

  This is a good overview

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3. Examples of laxative preparations you may be asked to take

UK:

• Senna tablets and Picolax or CitraFleet (sodium picosulphate) sachets

• Moviprep

• Plenvu

US

• Miralax

• Standard Golytely Preparation

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4. VLOG experiences demystifying the “Colon cleanse”; taking the strong laxative to clear the bowel.

MY COLONOSCOPY + PREP VLOG EXPERIENCE she’s using Moviprep

Taking Plenvu when your appointment is in the morning by University College London Hospitals NHS Foundation Trust

• There’s a similar vide using Plenvu for an afternoon procedure

• Preparing for your Colonoscopy (US) by Riverside. Videos include instructions around the use of Golytely, or Miralax

• Preparing for your Colonoscopy (US) by Tampa General Hospital

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5. Quotes I’ve heard from other people’s colonoscopy experiences

• “The worst thing about a colonoscopy is the laxative prep solution”

• “Peeing through your bum hole is a whole new experience”

• “I was out for the whole procedure”

• “I was awake the whole time and watched the camera go through each section of my bowel”

• “It was uncomfortable but there was no pain at all when they were using the camera”

• “Even if you have haemorrhoids it’s painless. It’s strange at first but it’s ok”

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6. After the colonoscopy: 2 key essentials

1. Aftercare is important. Be careful about what you eat and drink

In general you can eat and drink normally, but it’s best to start with light, easily digestible foods to ease back into eating. Focus on small, frequent meals for the first 24 hours to reduce bloating.

For the first 24-48 hours, avoid high-fibre, nuts, seeds.

I was really hungry and did the wrong thing of eating a high protein, fibre meal and suffered for 3-5 hours of very painful bloating

Stock up on peppermint tea, this had an almost immediate easing and soothing sensation.

This article resonates with my experience: The Best Foods to Eat After a Colonoscopy (and Which to Avoid) by Written by Ronald W. Dworkin, MD, PhD | Reviewed by Patricia Pinto-Garcia, MD, MPH

2. Don’t plan anything strenuous or stressful for 24 hours. Let your body rehydrate and normalise post-procedure.

This is a hard one if you’re caring for someone who has unpredictable needs or appointments. I get it.

I had no anaesthesia, because I wanted to watch the screen during the procedure. So I could drive myself home, and thought I’d be fine. In reality, the meal I had for lunch forced me to lie down for 2-4 hours because the gut spasms were so bad. The procedure wasn’t the problem, it was my choice of meal. Don’t let hunger push you to eat high fibre. Your gut needs to restart slowly.

I needed 48-72 hours for my gut to normalise. Peppermint tea relaxed the muscle spasms.

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7. What worked for me. Check with your doctor and nurses during your procedure

• A morning appointment was easier to manage, to ‘clear out the bowel’ and be sleeping through possible hangry hours.

• I had a ‘white diet’ with no fibre for 1 week before the procedure which was tough because I love grains, seeds and fibre, but it made the whole experience much easier.

• No beetroot, or anything with colouring. That means no Ribena Blackcurrant juice.

• Peppermint tea before and after will be my future goto drink.

• The Moviprep solution tastes awful, the citrus flavour is disgusting. So I alternated between drinking the laxative and having sips of an ‘alternating drink’:

  • herbal tea with some honey/sugar

  • chicken stock cube dissolved in hot water; clear broth

• I avoided carbonated drinks despite the instructions recommending lucozade, gatorade or another energy drink. I didn’t want to be gassy or risk any painful bloating

• The laxative instructions are very clear. I had bottles of water and a glass jug and big spoon. I had my ‘alternating drink’ ready. I focused on the timing of drinking the first load. So I had my little prep-area, and I was near a toilet. I distracted myself a little with a film/book.

• When I was on the last jug of laxative it was hard to keep drinking. I knew that when I was already ‘peeing’ fluid from my anus that there were no solids and my bowel was clear. (TMI, sorry but this is the reality!)

• Remember that the amount of laxative is an instruction for everyone. I already knew from my mother’s experience (a small person) that she simply couldn’t drink any more when she reached the last half of the jug.

• Make a judgment call, when it’s hard to drink more. I did. I just made sure that I was only passing liquids because I really didn’t want the colonoscopy to fail. Failure would be when the camera can’t see the bowel and colon walls easily.

• Small but important details:

  • I took a small rucksack to put my clothes in.

  • In the UK you undress. I was given paper shorts with a paper back opening and a hospital robe to wear with the ties behind me that the nurse tied the top.

  • I didn’t take slippers. I wore hands-free, slip-on/off shoes

  • I tied my long hair up in a topknot so it wouldn’t catch in ties or annoy me.

  • I carried my rucksack of clothes into the treatment room. Then I lay on my side on the hospital bed.

  • A nurse sat near me for reassurance.

  • Afterwards, I was wheeled on the bed into a recovery room. The nurses offered me a hot drink, cheese and crackers or biscuits.

• I’d researched ‘normal’ colon videos and watched my procedure on the screen.

• I bought some Buscopan (hyoscine butylbromide) just in case I might need it.

• I’ll definitely be having a colonoscopy regularly because it was much easier than I thought and it was very reassuring to know that I’ve a healthy bowel. I literally saw it for myself.

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8. Two support organisations

• Click here to go to Bowel Cancer UK’s website. “We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. Our vision is a future where nobody dies of the disease.”

• Click here to go to the US Colorectal Cancer organisation website. ‘The Colorectal Cancer Alliance is the nation's leading nonprofit dedicated to colorectal cancer. Together with a nation of passionate allies, we advocate for prevention, magnify support, and accelerate research to end this disease.’

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Thank you for being here. Help me network ‘empathy and inspiration’ by subscribing to Carer Mentor. Let’s help each other to check any health concerns early!

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The Cancer Anthology

Building a Synthesis of Insights

Carer Mentor’s Directories

Carer Mentor Articles

2025 Articles: From grief to advocacy and my own health scare.

January

• The premise: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’ January 28.

February.

• For World Cancer Day, I collaborated with other writers/creators to publish iCARE: The Cancer Anthology for, and by those with cancer and their caregivers (aka everyone around them). February 4th.

• The Cancer Journey. Moving Forward After A Diagnosis. Sharing some helpful resources and insights. February 11.

April.

• Introduction to The Cancer Care Journey, an Insights Map of Lived Experiences. April 7.

• The Cancer Care Journey: The Broader Context. What considerations/factors influence cancer treatment beyond the medical steps? Seeing and caring about the whole person and their life beyond the medicine/treatment journey. April 14.

• Bowel Cancer Awareness Month (UK). What are the symptoms? How do I get tested? Is there a screening programme? April 21

July

• ‘Do I have cancer?’ Navigating to Clarity: A summary of my journey and recommendations.

  When you have a nagging feeling at the back of your mind that something isn’t right, how long do you wait before consulting a doctor? What do you say to the doctor? What will you do when that nagging feeling doesn’t go away?

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Please share this Index to reach others seeking Cancer support and insights.

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Dear Friends,

The poem below is about caregiving for an older loved one or a parent through cancer treatment and monitoring.

Click here to read Why iCARE about Cancer. Past and present events, first published January 2025.

This second rollercoaster is built on a previous nightmare. We’re blessed and very lucky for what we have. Everything is relative!

If you’re a caregiver for someone with cancer, please know you’re not alone.

If you’re comfortable sharing, introduce yourself in the comments below. If you’ve written about your experience, feel free to share the URL and title of your piece.

There are many resources and information aimed at supporting the family and friends of those diagnosed with cancer. Click here for links to support organisations.

You may be interested in reading one of the articles in this Cancer Anthology.

"The 'We' of Cancer" by Victoria @Carer Mentor

In murky water, we try to move through
currents of uncertainty, trying not to stew. 
Until the 'Scanxiety' challenges us to a fight,
we keep hope for calm waters and ripples of light.
Thirsty for news but with quiet dread.
Fishing for hope, despite chatter in our heads.

Our world is smaller— Immuno-compromised, 
shielding, masked, invisible,                          and slightly fried.
Quality moments stuffed into seconds,    hearts remain tied. 
Together, we "should focus on the now!",   yet we're primed 
blind to the twists, the gaps          and that sudden tired fall!
Vigilant. To. It. All.

Guiding gently, talks of wishes, risks and needs. 
Listening intently for buzzing worry-bees 
Comforting, reassuring as I steer us through the weeds.
Are we caught in a swirl? Is it an issue? Or can we plan like we're free?
It's hard to just BE, constantly
swept along in more currents, nowhere to flee.

I choose to keep evolving and finding a 'me'
That fits to float our fragile bubble of 'We.'
Because one thing
Cancer can't override
Is all the love we have together
while I'm by her side.

I hope something in this poem resonated with you.

I realise not everyone can be a full-time carer, and many people do not have the support (people or finances) they need to care for their loved one. Some may have a difficult relationship with the person they’re trying to support.

My heartfelt empathy to anyone who is struggling. I see you.

Please like ‘❤️’ the article to guide others here.

Subscribe now

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? This Anthology was started in February 2025.

World Cancer Day, February 4th

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

1. Adult cancer experiences

   1. Breast Cancer

   2. Cervical Cancer

   3. nonHodgkin’s lymphoma

   4. Lung Cancer

   5. Ovarian

   6. Colorectal

   7. Prostate

   8. Squamous cell carcinoma of the tongue

   9. Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.

2. Child/childhood cancer experiences

   1. Osteogenic Sarcoma

   2. Leukaemia

   3. Rare form of paediatric cancer

   4. Neuroblastoma

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.

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1. Adult cancer experiences

Breast Cancer

Emma Vivian writes Attempts at Optimism by Emma Vivian.

‘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. ‘Welcome to ‘Attempts at Optimism’

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.

December 8, 2025, shared a montage of images from her last 365 days, a year since her diagnosis: 365 days on the mountain Frozen, terrified, amazed - and ready to party!

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.

Thank you for this article, : A New Phase of Healing And it’s not real fun. (Published January 8, 2026) Your way of keeping your heart open to feel the yucky feelings to wade through the difficult, and still feel the joy, is heartening—not just for those with cancer but also for other caregivers like myself.

“And more important than what I’m doing is how I’m being — I remind myself that I am a committed person, a resilient person, and a resourceful person. Use your own adjectives, but being clear about the kind of person I am (my identity) is what enables me to do the things that help me feel the way I want to feel.”

It’s an important message for all of us! Thanks, Jenny.

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.’

Back to Table of Contents

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.

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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.

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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.

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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.”

Colorectal/Bowel Cancer Awareness month is in April:

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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:

“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.”

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.

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.

A new article by A Year and a Bit. 2026 January 7th. Thanks to Guy for allowing me to share this ‘update’. It’s an uplifting read (you’ll understand the pun once you’ve read his post!). He’s had numerous achievements last year…

“None of which is particularly front and centre in my consciousness. The only success that really matters for 2025 is beating prostate cancer. I’ve gone from somebody with stage 4 cancer, a deformed prostate and tumours right through my pelvis and torso, to somebody whose blood tests are coming back with the magic word “undetectable”. Nothing else really matters does it.” - Guy

I recommend reading about how he used his celebration to raise awareness and enable 50 men to get PSA tests!

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

writes Hans Casteels’s Nutmeg’s Substack

I explored Hans’ articles about Prostate cancer, smiled at his sarcasm and dry humour, and subscribed because of this article, ‘The Wives Club’ an appreciation for his wife’s role as an unpaid caregiver, the second patient on the journey. I’ll be adding this to the Carer Mentor Cancer Anthology.

When a man is diagnosed with prostate cancer, there are two patients in the room. One has the biopsy slides; the other has the handbag. The one with the slides is fragile, hormonal, and suddenly convinced his trousers have become the main stage of medical tragedy. The one with the handbag is calm, competent, and quietly doing the arithmetic of pension, mortgage, and life insurance. The doctor addresses the man. The wife listens, takes notes, and later explains what was said. She is the translation service, the chauffeur, the pill-counter, the emotional sponge. And no one applauds her.

Read his letter to his wife and the rest of the article here

February 4th, 2026 has written this article for World Cancer Day:

February 4th: International Cancer Day. Congratulations, You’ve Discovered Cancer: A One-Day Festival for a 365-Day Disease. By Hans Casteels, reluctant lifetime member of the oncology loyalty program (no free coffee, no points, no exit).

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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.

Biopsies and Chicken Tenders. Caregiving, community, and the strange (chicken) tenderness of Planet Cancer.

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.

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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.

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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.”

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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.

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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)

Read more:

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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Please Remember to ‘❤️’ LIKE the article to guide others to this community support.

Thank you!

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World Cancer Day February 4th

CLICK HERE to learn more about the campaign and its organisers. #UNITEDBYUNIQUE #WORLDCANCERDAY

The day is led by the Union for International Cancer Control  (UICC) and was established in 2000.

The 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.”

Every story counts

“Cancer is more than just a medical diagnosis – it’s a deeply personal matter. Behind every diagnosis lies a unique human story – stories of grief, pain, healing, resilience, love and more. That’s why a people-centred approach to cancer care that fully integrates each individual’s unique needs, with compassion and empathy, leads to the best health outcomes.”

Get involved in any way you can. Because together, we can create change.
Together, we are #UnitedByUnique

Join us and take action

Every experience with cancer is unique and it will take all of us, united, to create a world where we look beyond the disease and see the person before the patient. This World Cancer Day, let’s come together to rewrite the future of cancer care - one where the needs of people and communities come first.

Everyone has an important role: those with cancer, loved ones, caregivers, friends, neighbours, practitioners, researchers, advocates, and allies.

Carer Mentor Resources and support

1. This is the iCARE Cancer Anthology, a collaboration with several writers:

2. A publications directory so new readers are signposted to other publications: iCARE: Cancer Publications Directory. Building a Community Network of Cancer Support

3. Articles, signposting to support organisations and an overarching index. Index: Cancer Articles & Resources. Building a community support network and resources

I’m continuing to update these resources.

If you’d like to share an article to help others, in the comments below please provide:

1. A short introduction about yourself

2. Article title and the URL link to your post

A special shout out to our community network who have written about their experiences. Care to share a new article?

, , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Resources to spread the word

Here’s where you can find Materials for World Cancer Day

Please remember to ‘❤️’ LIKE the article to guide others to this community support.

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Hello Dear Reader! A special welcome to our new Carer Mentor community members!

Thank you for spending some of your precious time and energy reading this article.

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

This directory is part of an umbrella Index: Cancer Articles & Resources

I hope this provides easy access and navigation for any reader seeking support and insights from others.

Each of these publications subscribes to Carer Mentor. I contacted each author/creator/publisher to confirm that I could highlight their articles/work.

This is how we can amplify each other’s unique experiences and build a support network as a community and outreach initiative.

Directory of Publications by Cancer Types.

Adult

1. Breast Cancer

2. Cervical

3. Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.

4. Colorectal/Bowel Cancer

5. Lymphoma: Hodgkins and non-Hodgkins (presence or absence of Reed-Sternberg cells, large, abnormal B lymphocytes, respectively)

6. Lung

7. Ovarian

8. Prostate

9. Skin cancer e.g. Squamous cell carcinoma of the tongue

Paediatric

1. Inflammatory Myofibroblastic Tumour

2. Leukaemia

3. Neuroblastoma

4. Sarcomas, e.g. Osteogenic

[Authors/Creators/Publishers - contact me if you need me to edit your entry below]

Adult cancer

Breast Cancer

• Kristina Adams Waldorf, MD writes After He Said Cancer about how her family continue to navigate through her husband’s breast cancer.

• John Saltalamacchia writes Life. After. Life. about grief and losing his beloved wife to breast cancer.

• Emma Vivian writes Am I Cured Yet? about surviving through the experience of breast cancer beyond that of her friend.

• Kate Harrison writes My Big Fat Cancer Plot Twist. She says, 'I’m a British writer diagnosed in December 2024 with triple-negative breast cancer.

• 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.'

• Victorious Val writes Livin' Out Loud “2x cancer survivor | writer | fitness enthusiast | Texan living in Alaska”

Cervical

• writes ., and is a stage 4 cervical cancer survivor AND breast cancer survivor. Two separate cancers six years apart.

  No Regrets Staring at Death Helped Me See Life Instead

  On Ephemerality The beauty is in the knowing and accepting the invitation to savour it all.

Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.

• writes — “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.”

Colorectal

• Janine Cutting writes New Found Life by Janine Cutting about life beyond her colorectal cancer.

• Mikel K Miller writes To Hell and Back: Surviving Colorectal Cancer about his battle with colorectal cancer and the physical, emotional, and psychological toll it took on his life.

• David Barrow writes Shit I've got Cancer “The day-to-day cancer diaries of a middle-aged male who's wondering how the hell to react to a colon cancer diagnosis.“

• writes Cancer Card “Musings, meanderings, notes and updates on life with Stage 4 colon cancer.”

• writes Doing Hard Things “My treatment plans, my morale, and the rich emotional side of living with stage 4 (colon) cancer”

• writes “My musings on cancer, healing, and mental health”

  “I was diagnosed with stage 4 colon cancer in mid-October 2022. I started treatment mid-November 2022. Eight cycles later, I started preparing for a cancer de-bulking surgery, which occurred on April 13, 2023. Surgery recovery took about three months.”

Lymphoma: Hodgkins and non Hodgkins

• Jeannie Moloo writes A Full Plate with Jeannie Moloo about the gaps in cancer care, her late husband’s experience of nonHodgkin’s lymphoma, and her own experience of Breast cancer.

Lung

• 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.

Ovarian

• Jennifer Garam writes Rebuilding With Jennifer Garam and Jennifer’s Website & Blog where she writes about her recovery from ovarian cancer.

Prostate

• Anthony Feig 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."

• Mark Stevenson writes about Prostate Cancer and the bits they leave out. 'Writing about my prostate cancer because, why not turn a pain in the prostate into something lighter? Sharing the highs, lows, & awkward doctor visits, humour might not cure cancer, but it sure as hell makes the ride a lot more bearable'

• Guy Gratton writes Guy with Cancer 'I'm an academic, a writer, a pilot, a husband - and as of November 2024 I learned that I have prostate cancer. This blog is mostly about the last bit.'

• Rick Lamplugh writes The Wilds of Cancer: A Journey. For a decade, award-winning indie author Rick Lamplugh wrote to protect wildlife and wild lands. He now writes about his journey into the wilds of cancer and the ways he has found to help his body, mind, and heart.

• writes Hans Casteel’s Nutmeg’s Substack. ‘Call me Hans: Belgian by birth, sarcastic by necessity. I juggle cancer, corporate strategy, Bosch errors, and gourmet hot dogs. This Substack is my therapy bill. Free for you, tragic for me.’

Skin cancer, e.g. Squamous cell carcinoma of the tongue

• Bess Stillman writes Everything Is An Emergency. 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).

Paediatric cancer

Inflammatory Myofibroblastic Tumour

• Jacqueline Dooley writes The Halfway Path "about parental grief and how I’m learning to live my life all over again since I lost my daughter on March 22, 2017." Her essays on grief and parenting have appeared in The Washington Post, HuffPost, Modern Loss, Al Jazeera, Pulse, Longreads, and more

Leukaemia

• Elizabeth Austin writes Writing Elizabeth where she chronicles her family's post-cancer life in the aftermath of her daughter's leukemia.

Neuroblastoma

• Taryn writes Toeing the Golden Line with Taryn Jarboe about 'what life is like for a bereaved mother who lost her eighteen month old daughter to neuroblastoma, a form of paediatric cancer.'

Sarcomas e.g. Osteogenic

• Nerisa Gracia writes Disability and Rizz about her childhood cancer, osteogenic sarcoma.

Thank you for being here and reading Carer Mentor: Empathy and Inspiration.

If you, or someone you know, has a website/blog or publication where they share their cancer experience -whether they are the person with the cancer or their caregiver, friend, or partner- please share their details below, or let them know about Carer Mentor.

Please remember to ‘❤️’ LIKE the article to guide others to these resources.

Thank you!

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Research shows that more than nine in 10 people survive bowel cancer1 when it’s diagnosed at the earliest stage.

A personal summary note

One of the first things I did at the start of this year was to talk to a specialist nurse at our GP practice about cancer screening, tests and alarm symptoms.

Why? Because when I summed up the number of cancer cases in my family and reviewed the number of different cancers friends/relatives experienced or are going through right now, I wanted to know what to do, when.

As I wrote in my article ‘Why iCARE about Cancer’, ever since a good friend-mentor passed early in my career, I’ve been sensitised to the cruelty of cancer, its indiscriminate impact and its speed.

A close friend died from bowel cancer on New Year’s Eve, 2024. Hence, my renewed motivation: to amplify the experiences of others and be primed with what to do when/if I get symptoms.

Many of us second-guess a nagging pain. For perimenopausal women, we may not be able to distinguish between erratic abdominal period pains and signs of cancer.

Some people may try to dismiss it because it feels like more important things need our attention.

Others may deprioritise themselves over the needs of others… yes, all you lovely caregivers out there, I see you!!

Don’t doubt yourself. I was advised to track any ‘nagging’ symptoms in a diary or calendar so I can see patterns and make an appointment to consult my GP.

TL:DR 2 The information below shows that the US starts screening for colorectal cancer at 45. The UK program is for people aged 50–74 (with a gradual rollout lowering the age from 60 to 50, so some may receive it earlier, depending on location). These are national screening programs—when you get called up for a test, it doesn’t mean you can’t get checked for symptoms.

Track symptoms, report them to your doctor, and get them checked. This is when we need to advocate for ourselves—having clear information about what happened, when, and what types of poop you have will help the discussion, especially if your symptoms or bowel habits have changed. Click here for information and support at Bowel Cancer UK.

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Do you have a question about Bowel/Colorectal Cancer? Let us know in the Comments below.

Leave a comment

I recommend reading these publications to learn more about their personal experiences. Listed alphabetically.

1. writes . “My treatment plans, my morale, and the rich emotional side of living with stage 4 (colon) cancer'“

Marching on with Health and Hope “as a stage 4b patient who is 2 years into this thing (and doing well, by the grace of God), I'm here to make you aware that I was fully unaware of the cancer growing throughout my body for probably many years leading up to my diagnosis. I did not ignore symptoms. My doctor did not ignore me. And I’m still too young for a routine colonoscopy. Yet here I am.”

2. David ‘Dar’ Barrow writes Shit I've got Cancer .“The day-to-day cancer diaries of a middle-aged male who's wondering how the hell to react to a colon cancer diagnosis.“

SHIT. I’ve got cancer. The diaries of a 47 year old male on discovering a cancer diagnosis I wasn’t expecting.

“This substack is for anyone going through Cancer and wondering how to feel, what to do next, who to speak to, etc. It’s also for anyone supporting someone going through cancer or just anyone.

I am David, aka Dar, a male cancer patient of 47 years old, who just thought I had a bothersome tummy ache.”

3. Janine Cutting writes New Found Life about life beyond her colorectal cancer.

“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””

4. writes “Musings, meanderings, notes and updates on life with Stage 4 colon cancer.”

How it started. Finding out I have cancer. “Years ago, I was watching Amy Schumer on a late night talk show. She was talking about advice she'd received about comedy, I can't remember now if it was from her grandmother or someone famous, but the advice was this, "always go for the joke."

5. Mikel K Miller writes To Hell and Back: Surviving Colorectal Cancer about his battle with colorectal cancer and the physical, emotional, and psychological toll it took on his life.

Declining a colonoscopy at age 76 was my tragic mistake. “He said a colonoscopy after age 75 was optional based on guidelines from the Centers for Disease Control and Prevention that considered family history, normal health exams, and no symptoms.

So, in good health at age 76, I declined. Looking back, that was a TRAGIC mistake on my part.

It’s almost certain that a colonoscopy at age 76 would have detected my colorectal cancer.”

6. writes . “My name is Isabelle, I’m 38 years old, and I am a cancer survivor. I started writing recently to process everything that has happened since before my diagnosis. Cancer is a big part of my life, but I’m trying to not let it define me.”

On déjà-vu And how life repeats itself “Yesterday was the second anniversary of my big surgery. Oddly enough, I completely forgot what day it was yesterday. I don’t think I actually noticed the date at all - I was reminded today through Apple Photo memories on my phone.

The coincidence that two years later, I am preparing to go under the surgical knife again is not lost on me. There are a lot of emotions surging from the realization of the April 12th anniversary having gone by that I need to process.”

You, Me and the Big C: Putting the can in cancer (Podcast)

Dame Deborah Anne James DBE (1 October 1981 – 28 June 2022) was an English journalist, educator, podcast host and charity campaigner from London. In 2016, she was diagnosed with incurable bowel cancer and went on to host the You, Me and the Big C podcast on BBC Radio 5 Live about her struggles with her illness, calling herself ‘The Bowel Babe’.

“I have the poo cancer... There's nothing pink about my cancer, it's just brown!” : Deborah James, aka Bowel Babe, talks about her stage four bowel cancer diagnosis with Rachael and Lauren. - Dame Deborah Anne James.

What are the symptoms?

Knowing the symptoms is essential to helping spot bowel cancer early. The earlier it’s found, the more treatable it will likely be.

This is why this #BowelCancerAwarenessMonth, @bowelcanceruk are asking everyone to share the symptoms of the disease. (see above)

#PassItOn

[This article is a synthesis of information from Bowel Cancer UK, Cancer Research UK and Macmillan Cancer Support34 ]

In the UK, about 44,100 people get bowel cancer each year. While it's more common in older people, the number of younger people under 50 being diagnosed is increasing. This rising trend highlights why awareness of symptoms and early detection are essential, regardless of age.

Please read the symptoms and discuss them with your friends/family.

Don’t wait to get that nagging pain in your stomach checked!

Poo cannot be a taboo! Say hello to the Bristol Stool Scale

If you're worried about your symptoms, it's important to:

• Keep a symptom diary to track changes

• Be specific about your symptoms and how they affect you

• Return to your doctor if symptoms don't improve with initial treatment

Macmillan Cancer Support

June 21, 2022 Oncologist Rebecca and Cancer Nurse Specialist Claire talk through the common symptoms of bowel cancer. These include diarrhoea, constipation, blood in your poo, tiredness and weight loss. We also hear from Nick, Naz and Sean about their symptoms of bowel cancer.

Bowel cancer screening

In the UK, Bowel cancer screening is a test you do at home that checks for signs of bowel cancer. It's offered to everyone aged 54 to 74, every 2 years. Bowel cancer screening uses a test called a faecal immunochemical test (FIT)5 to look for blood in a sample of your poo. This could be a sign of bowel cancer.

You collect the sample at home and send it by post to be tested. Approximately, 2 weeks later you receive a letter with the results. You can also get screening for bowel cancer every 2 years if you're aged 75 or over, but you need to call the bowel cancer screening helpline on 0800 707 6060 and ask for the test.

In the US,The American Cancer Society Guideline for Colorectal Cancer Screening recommends that people at average risk* of colorectal cancer start regular screening at age 45. This can be done either with a sensitive test that looks for signs of cancer in a person’s stool (a stool-based test), or with an exam that looks at the colon and rectum (a visual exam).

People who are in good health and with a life expectancy of more than 10 years should continue regular colorectal cancer screening through age 75.

For people ages 76 through 85, the decision to be screened should be based on a person’s preferences, life expectancy, overall health, and prior screening history.

People over age 85 should no longer get colorectal cancer screening.

*For screening, people are considered to be at average risk if they do not have:

• A personal history of colorectal cancer or certain types of polyps

• A family history of colorectal cancer

• A personal history of inflammatory bowel disease (ulcerative colitis or Crohn’s disease)

• A confirmed or suspected hereditary colorectal cancer syndrome, such as familial adenomatous polyposis (FAP) or Lynch syndrome (hereditary non-polyposis colon cancer or HNPCC)

• A personal history of getting radiation to the abdomen (belly) or pelvic area to treat a prior cancer

Did you know that the number of younger people under 50 being diagnosed is increasing?

The Lancet Article. January 2025

Colorectal cancer incidence trends in younger versus older adults: an analysis of population-based cancer registry data. Sung, Hyuna et al. The Lancet Oncology, Volume 26, Issue 1, 51 - 63 January 2025

Background

Previous studies have shown that colorectal cancer incidence is increasing among younger adults (aged <50 years) in multiple high-income western countries in contrast with stabilising or decreasing trends in incidence in older adults (aged ≥50 years). This study aimed to investigate contemporary colorectal cancer incidence trends in younger adults versus older adults.

Interpretation: Early-onset colorectal cancer incidence rates are rising in 27 of 50 countries and territories examined, with the rise either exclusive to early-onset disease or faster than the increase in older adults in 20 of the 27 countries. The findings underscore the need for intensified efforts to identify factors driving these trends and increase awareness to help facilitate early detection.

The Cancer Research UK Article

‘Bowel cancer rates rising in younger adults around the world.’ Cancer Research UK. by Tim Gunn | News. 11 December 2024

Of all the countries and territories included in the study, the UK nations rank 16th to 19th for the overall rate of early-onset bowel cancer. The rate is highest in Australia, Puerto Rico, New Zealand, the US, and South Korea.

The last decade of WHO data shows that in 14 primarily high-income countries, bowel cancer rates increased in 25 to 49-year-olds while stabilising in older age groups.

This could be linked to changes in how and when bowel cancer is diagnosed (perhaps pointing to the success of screening programmes), but there’s a lot more we need to find out. Dr Cao believes the differences underscore the need to identify emerging and novel risk factors for early-onset bowel cancers, which might mark them out from bowel cancers that start later in life.

“With this rigorous analysis leveraging WHO data, we’ve been able to make direct comparisons across countries and deepen our understanding of what’s going on across the globe,” she added. “This will be the new global map for this topic.”

Taking on early-onset bowel cancer

As the co-lead for Cancer Grand Challenges team PROSPECT, Dr Cao is already using the map to plot a path forward.

In March 2024, Cancer Grand Challenges awarded PROSPECT up to £20m to investigate the underlying causes and mechanisms driving the rise in early-onset bowel cancer. From there, the team are aiming to develop and test innovative strategies to help prevent the disease in future generations.

Two support organisations

Click here to go to Bowel Cancer UK’s website. There is a forum where you can chat online to others with bowel cancer.

I’m including this second video about symptoms from with Dr Anisha Patel, who is a GP, because she raises an important point: 1 in 12 of GP consults is gut related, don’t assume that you’re wasting a GPs time this is the everyday BUT important consults that GPs are used to. Note your symptoms - what happens when and tell your doctor.

Click here to go to the US Colorectal Cancer organisation website. ‘The Colorectal Cancer Alliance is the nation's leading nonprofit dedicated to colorectal cancer. Together with a nation of passionate allies, we advocate for prevention, magnify support, and accelerate research to end this disease.’

A final ACTIONABLE idea

Let’s start checking in with each other about our health and motivate each other to get that tummy pain or diarrhoea, or increasing fatigue reviewed by a doctor.

I’ve been guilty of dismissive reassurance, how about we change from

‘I’m sure you’re okay’,

TO

‘if you’re mentioning it, it must be playing on your mind…why not go get it checked out…how often is this happening? How long have you felt like this?

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Recommended organisations (UK, USA and Canada).

This list is comprised of recommendations by Carer Mentor subscribers. I’d be grateful for any personal recommendations you may have about organisations supporting cancer sufferers and their families/friends. Thank you!

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’

Bowel Cancer UK website. ‘We're the UK's leading bowel cancer charity’ There is a forum where you can chat online to others with bowel cancer.

BBC Action Line List of UK Organisations for Information and Support ‘If you, or someone you know, have been affected by cancer, the stated organisations may be able to help.’

You, Me and the Big C: Putting the can in cancer (Podcast). Dame Deborah Anne James DBE (1 October 1981 – 28 June 2022) was an English journalist, educator, podcast host and charity campaigner from London. In 2016, she was diagnosed with incurable bowel cancer and went on to host the You, Me and the Big C podcast on BBC Radio 5 Live about her struggles with her illness, calling herself ‘The Bowel Babe’.

CarersUK page ‘Caring for Someone with Cancer “(UK) 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.’

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

Click here to go to the (US) Colorectal Cancer organisation website. ‘The Colorectal Cancer Alliance is the nation's leading nonprofit dedicated to colorectal cancer. Together with a nation of passionate allies, we advocate for prevention, magnify support, and accelerate research to end this disease.’

The Canadian Cancer Society: (Canada) “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 (US)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 (US) 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 (Global) he 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.

Camp Kesem (US)- 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 (US)- 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 (US) - Provides peers support groups, grief resources, and advice for parents and caregivers.

CancerCare’s Bereavement Program (US)- Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.

Other organisations Useful links for advice, info and ideas

Back to Table of Contents

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)

This is a reader-supported publication, and I’m working hard to keep everything free for those who need help.

Networking and collaborating make this a community effort, but time is my most expensive asset.

Your support with a free or paid subscription would be much appreciated.

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Last week, as part of World Cancer Day, I launched The Cancer Anthology, together with fourteen writers who are members of this Carer Mentor community.

Dear Friend, if you’re the loved one/friend/family member of someone with cancer, I see you. I was/am that person for my parents and friend(s). I care about Cancer.

The passing of a very close friend at the turn of the New Year spurred me to focus new Carer Mentor content on networking community support for cancer sufferers/survivors (which includes everyone on the journey, not just the loved one who’s diagnosed with cancer).

I hope these tools and resources that have helped me navigate challenging emotions and rollercoaster events can help you, too.

Share Carer Mentor: Empathy & Inspiration

I’ve several close friends and family who have suffered/are suffering from various forms of cancer: Bladder, Endometrial, Lung, Prostate, Bowel, Colon, Breast and Skin.

I’ve become very familiar with the lingo like MRI1, CT2, Contrast CT3, PET4, MDT5, Colonoscopy6, Chemotherapy7, Radiotherapy8, TURBT9, BCG10 , Targeted Therapy, .

I’ve camped out in hospitals overnight, watched over each of my parents —hypervigilant to every whimper, or advocating for their needs in an overworked, under-resourced hospital/community setting. I’ve also orchestrated care support for family members at a distance.

EVERY person’s experience is unique, whether you’re the person with cancer or the family/friend/caregiver, there are communities online and near you that can offer support. You’re not alone.

While there is a wealth of cancer information everywhere, it can feel overwhelming, like a tsunami of information.

I’m not here to offer comprehensive information. I’m signposting some resources you can dip into now and again as reference points, with insights.

You don’t have to be alone navigating all this. Figuring out what to ask, when, and why can feel burdensome. There are people you can talk to and organisations that have the knowledge that can be tailored to your situation. Call/ask them.

Dear caregivers, it’s not all on you. Identify the people you trust and who will DO things, people who actively listen and act without drama. (Not the swoop-in hero-types, care-splainers, or mansplainers).

Tips that work for me:

• Breathe! Don’t try to understand everything all at once, knowing a question is already a good start if you’re discombobulated.

• Keep a notebook journal with questions or a running list alongside your appointment calendar.

• Have someone with you at your consultations, and/or record the consultation on your phone.

• Debrief over tea/coffee/lunch to align on what you heard. Make a note of any clarifying questions and follow-up actions.

• Aligning on ‘what this means for us now’ keeps us in synch, with one voice—with every small step. This isn’t a checkbox action. It’s small thoughts, discussed and confirmed over a couple of days sometimes.

• Always keep 1 hardcopy calendar with all the appointments as a backup. Plot out when you expect appointments to be as far as possible, e.g. blood tests. Bank holidays are a pain in the UK.

• If you’re in the UK, identify your pharmacy and set up home deliveries.

CM Mantra: Never assume something has been done, communicated, or actioned.

Several organisations were recommended personally by writers in the iCARE: The Cancer Anthology,

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Index of Cancer Resources

1. The big picture view of the Cancer Journey from Macmillan Cancer Support

2. Questions and prompt suggestions from an oncologist

3. UK Maggie’s: Everyone’s home for cancer care

4. Caring for the Caregiver, part of a toolbox by The National Coalition for Cancer Survivorship (NCCS). Audio insights.

5. USA Siteman Cancer Center. This is Cancer Podcast - Episode 20: It’s Cancer: Now What? Finding Direction After the Diagnosis (August 21, 2024).

1. The cancer journey. Macmillan Cancer Support: Times of need and cancer

Macmillan, a UK-based organisation, has identified stages along people’s cancer journey when experiences are commonly shared, with five key moments (diagnosis, treatment, recovery, living with treatable but not curable cancer and end of life) where there is a particularly high level of unmet need.

The graph shows the stages in peoples' cancer journey that are common moments as identified by Macmillan. The stages are: concerned about health, going for tests, receiving a cancer diagnosis, starting and going through treatment, finishing and recovering from treatment. After going for tests there is a line connecting to cancer coming back. After finishing and recovering from treatment the journey then splits and includes: living with treatable but not curable cancer and death. Another branch is living well after cancer and living with the consequences of cancer. The graph has been made to show that these stages can repeat and are not linear.

2. Questions and prompt suggestions from an oncologist.

[I recently found Erik’s publication. His most recent article was published in 2022. I haven’t received feedback after reaching out to him. However, based on my experience, I recommend reading these articles to support your discussions]

Erik Rupard writes Cancer 101 says he's

'Just a humble country oncologist. a triple-board-certified specialist in internal medicine, hematology, and medical oncology, and an assistant professor at Drexel University College of Medicine. I initially wrote these articles for my patients as a practical users guide to the often-confusing cancer experience, and to provide pragmatic and honest advice for navigating Cancerland.'

Ten Questions Every Cancer Patient Should Ask At Their First Appointment (and why you need these answers) (Published March 28, 2022)

Mythbusters #1: There Is A Cure For Cancer. No there isn't, but I still have some very good news.

“Below the levels detected by this scan/test” or “Unchanged, controlled” are THE phrases that relieve us after waiting in uncertainty—a string of reprieves, until the next monitoring test.

3. Maggie’s: Everyone’s home for cancer care

There are 27 centres around the UK and 4 internationally (Kalida Barcelona, Groningen, Hong Kong and Tokyo).

Maggie Keswick Jencks used her experience of cancer to create a new type of cancer care – centres offering professional support, bringing people together in a calm, friendly, uplifting space.

Who was Maggie?

Maggie was a writer, gardener and designer. When she was 47, Maggie was diagnosed with breast cancer and five years later, in May 1993, on a visit to the Western General Hospital in Edinburgh, she was told that it had returned.

Read more about Maggie and Charles

This is a story of maggie’s

You can explore the support from Maggie’s here

4. The National Coalition for Cancer Survivorship (NCCS)

The Cancer Survival Toolbox®

The Cancer Survival Toolbox is a free, award-winning audio program developed by leading cancer organizations to help people develop important skills to meet the challenges of their illness.

The audio programs address scenarios for many topics and issues cancer patients/survivors face during their cancer journey. The conversations touch on issues from how to communicate with your doctor, family and loved ones, to understanding complicated financial issues. Each scenario is inspired by true stories of real cancer patients/survivors. Caring for the Caregiver

5. Siteman Cancer Center. This is Cancer Podcast- Episode 20: It’s Cancer: Now What? Finding Direction After the Diagnosis (August 21, 2024).

Siteman Cancer Center11 There are several videos in addition to this one. Take a look on YouTube.

This video refers to some US-specific processes of cancer care. The challenges Chuck and his family faced will resonate with several of us. Here are some of the insights he shared.

Chuck learned how to tailor a treatment plan firsthand as he acted as a caregiver to his son and then when he faced a cancer diagnosis himself. In the episode Chuck shares his experience and is joined by Tate Rondot, Siteman’s Manager of Support Services.

Both are involved in Siteman’s Patient and Family Advisory Council (PFAC), a group dedicated to helping every patient create the plan they need during their cancer care. They offer considerations and resources that personalize patients’ treatment from diagnosis to hospice and every stage in between.

“This is Cancer” is brought to you by Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis and is produced at Spot Content Studio in St. Louis, MO.

Chuck’s son had Glioblastoma (GBM), and then he had Prostate cancer

Key soundbite-insights

You can’t do it by yourself. Identify your allies - nurses, technicians in addition to the doctors

Understand how the insurances work (Chuck works in insurance so knew how to navigate it). Find someone to help you with that.

Most difficult part of navigating the journey: it’s ok to feel whatever your feeling. Each person is different. Be kind to yourself. You don’t need everything all at once. It’s ok NOT to know everything, every resource from day 1, right now.

At 19.55 minutes they discuss ‘Tumour board’, this sounds like a UK multidisciplinary team.

At 22.03 minutes “how do you manage the anxiety and trust the treatment plan that’s recommended. Ask questions, be proactive about understanding the plan. If you don’t know what questions to ask reach out / seek support”

At 23.56 minutes How do you manage when things change in the middle of the journey?” Everyone is different. They may start with the standard protocols but then each person’s reaction is different. ‘Take a deep breath. So you can respond. ’

At 26.30 minutes The transition to hospice care that Chuck experienced for his son was seamless.

“The Palliative care nurse took the leadership of what was needed in their home.” Remember: this is a case in the US, not UK.

At 31.55 “You as a patients, you have the right to answer any question you like: who are you? What do you do? How long have you been doing this? (to the doctors)."

Ask the nurses, ‘how can you help me? How do I get in contact with you? Can I email you information? can you email me stuff along the way if I have issues? how do I go about doing it? Ask them open-ended questions like ‘what else do I need to know?

‘What else do I need to know? Also to find out who is also part of the Care team. Because it's not just the physician and the nurses it's the social workers it's the psychologists it's the dieticians. It's everybody that works in that facility, is that person's care team and so they have hundreds of people that are on their care team”

In the UK the type and availability of services can be, what many of us call ‘a postcode lottery.’ Always ask.

At 37.32 “We have a very close friend whose adult son was going through leukemia and people would come to him and say, ‘hey how's he doing’. His advice to me was you don't need to share anything with anybody because a lot of this turns into gossip and gossip is not good because it goes out and gets changed 16 times.

So it's keeping yourself surrounded with your care team of people that will help you through the process. In our case it didn't need to be large but it had to be impactful with the people that were in place people that could add something instead of extracting something to share with other people about the stuff that was happening.”

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When you have a moment, look around “iCARE Stack.” Since 2024, I’ve been building this hub of resources and a directory of publications.

iCARE Stack is this caregiver’s attempt at offering easy access to support when you have limited time and energy. For example, Caregiving Hacks and Tips is a rolling list of recommendations drawn from experience.

Why iCARE about Cancer.

Today’s article shares some of my lived experiences and offers a premise for why World Cancer Day is important to me.

The Past

I wonder if there’s someone who hasn’t been touched by cancer? When did it appear in your life?

One of my first experiences of its cruelty was with a good friend and work colleague. He was a charming, smiling man in his early thirties with a beautiful wife and babies. We were a tight-knit little band of workers from diverse backgrounds and ages, and he was close to everyone.

He mentored me in my new job and showed me the kind of leader I wanted to be at work and in life. He was known for calming conflicts with his diplomacy, being kind and patient, and having a quiet, humble intelligence that he offered freely.

I think it was July or August when he told us he had a back injury after picking up his son too quickly. Less than six months later, he died.

I knew death, funerals, and cremations. His passing was a wake-up call to the cruelty of cancer, its indiscriminate impact and speed.

Since then, other cancer diagnoses that have touched those close to me include Bladder, Endometrial, Ovarian, Lung, Prostate, Bowel, Colon, Stomach, Breast and Skin.

My father’s bladder cancer was diagnosed in 2016, destabilising what little calm had been established after the nightmare hospitalisation in 2015 and his diagnosis of vascular dementia.

A transection surgery of the bladder was scheduled. It’s not a straightforward procedure for someone with congestive heart failure, Arrhythmia and restricted movement in his joints due to rheumatoid arthritis—anaesthesia requires a very experienced hand.

When hands and fingers are gnarled, it’s hard to drink from a cup, adjust the catheter tubing, and get a nurse’s attention when the flush-out fluid bag is empty. It’s a bigger nightmare when the catheter isn’t positioned correctly.

In the hospital, I oscillated between adjusting bloody dressings and catheter tubes; caring for my Dad, to making myself bigger to politely but firmly request help.

Then, at home, highly tuned to his symptoms and needs, we had to decipher when to seek medical advice, to red flag an issue or prompt a reassessment of his medications.

That rollercoaster was fraught and fragile, one long day over years, punctuated by traumatic moments, clinging onto the only certainty that the sun would come up and go down.

Preparing for the unpredictable, shifting needs is challenging, especially if you try to do it alone. Thankfully, Mum and I had each other and a few caring friends and family members.

After Dad passed in January 2020, today’s journey feels calmer.

Today, we live between CTs, PETs, MRIs, and blood results1 enjoying peaceful, quiet days, having survived a hellish rollercoaster. We have greater predictability and certainty than before, and we relish this peace. But then, everything is relative!

January 2025

The funeral of one of those close friends on Friday, the 24th, 2025, destabilised me.

Dark grey drizzle and biting winds had me retreating into my coat and scarf—mummified armour.

High stormy winds caused havoc around our city. Roads were closed and littered with broken branches. Unstable roof structures and kerbside trees created precarious danger zones everywhere.

My car’s GPS couldn’t handle the road closures by police, and even Google Maps was having issues, wondering what I was doing.

Sometimes, even when you think you need additional guides (and you think you’re a terrible driver!), you need to trust your compass.

In this instance, I was unsure of everything. The crematorium was one of the few places I was familiar with, but the exact directions seemed elusive.

So, all this kept me painfully, mindfully attentive when I wanted to gloss and fly past the day. My speed notched up in line with my anxiety and adrenaline. The lack of precise directions slowed me to a crawl.

I wanted this day over and done with. The in-my-face reality of her passing was not something I wanted to face or talk about out loud, especially not with others.

Speed bumps jolted the car, forcing me to slow (my grief feelings) down even more.

Parked. Awkward. Stilted conversations. Defensive hugging of my mummified armour didn’t give me the comfort I needed.

The vicar asks us to remember her in silence.

I see her. Vividly.

Gleeful giggling, doing her little shimmy dance from one foot to another.

Delight-filled and excited.

Or hugging me tightly

She’s not my age in years but in spirit.

Or am I closer to her age in spirit these days?

We’ve been friends since I was in the single digits.

The decades of care and love she’s generously given to so many …beyond words.

Well-capped tears broke through. Freed.

Every pew had a white flurry of tissues, surrendering to the truth of her absence.

I managed to swallow back the howls…until I reached the safe confines of my car.

I’m glad I missed the horn when I punched the steering wheel hard.

“Cancer is such A SHIT!”

Punch! Howl! Double-punch. Howl!

I’m very familiar with grief-rage. It’s part of the fire that propels me forward.

Carer Mentor helps me metabolise that grief-rage into something I hope is meaningful and purposeful for you. You’re not alone.

It's time to put people and communities at the centre of Health Systems and Cancer Care. We're unique in our Needs, but United in our goals and message to give people a stronger voice;a more active role in their own health. Treat the person, not only the disease, so that everyone everywhere can get the care they need

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Tuesday, February 4th, is World Cancer Day.

There are numerous ways you could support the campaign.

For example, you can use the logo as a profile photo, write an article, attend a local event (see their global map of local activities) or even organise an event.

CLICK HERE to learn more about the campaign.

#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."

Who is the Global Organisation orchestrating this?

World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda.

Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries of health, public health agencies and patient support groups.

Continue to read more here.

The Campaign: a three-year roadmap

"Every experience with cancer is unique and it will take all of us, united, to create a world where we look beyond the disease and see the person before the patient. #UnitedByUnique

The “United by Unique” campaign will explore different dimensions of people-centred care and new ways of making a difference. It’s about uplifting our unique needs and views while we join together to achieve our shared goals. Everyone has an important role to play: patients, loved ones, caregivers, friends, neighbours, practitioners, researchers, advocates, and allies. The campaign offers a three-year roadmap that begins with you.

The 2025 Campaign focus: Treat the person, Not just the Disease

People living with cancer don’t always feel heard, seen, or understood. They might feel alienated and voiceless at a time when they’re also learning to navigate an unfamiliar and confusing health system, not to mention dealing with the emotional highs and lows of cancer diagnosis, treatment, or recovery.

People-centred cancer care represents an opportunity to refocus, rewire, and rewrite how we think about cancer, to embrace people’s differences, and to make sure that everyone is seen for who they really are and has access to the care they need.

Support for a people-centred care approach has been growing for years, and for good reason: it improves access to care and provides many positive effects throughout treatment and recovery, leading to improvements in both physical and emotional wellbeing. The World Health Organization has written that developing more integrated people-centred care systems “has the potential to generate significant benefits to the health and healthcare of all people.”

Materials for World Cancer Day

Click here for the free materials to support the campaign.

United in our goals, unique in our needs. That is the World Cancer Day credo that will be heard around the world in the lead up to and on 4 February 2025. Its meaning is simple: everyone has unique needs, unique perspectives, and a unique story to tell, yet people touched by cancer are united in a shared ambition to lower the cancer burden, to see cancer treated successfully, and to lead better lives with cancer.

Every experience with cancer is unique and it will take all of us, united, to create a world where we look beyond the disease and see the person before the patient. A world where the needs of people and communities are at the centre of health systems.

On World Cancer Day, everyone has the potential to make a difference. Here are several ways you can engage with your family, friends and community to support a good cause.

Raising awareness and connecting with empathy and inspiration are at the heart of Carer Mentor’s mission.

Will you create/write something for World Cancer Day? Let me know in the comments.

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Warm wishes to you and your loved ones.

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