Wednesday, 24 September 2025

Legacy & Echoes: The Truth That Still Is

A Note to Medical Staff

If you work in healthcare, I invite you to read this reflection not as a critique, but as a personal account of my lived experience. My Dad’s final months were shaped by delays, dismissals, and a lack of coordinated care. What follows is not a clinical account—it’s a daughter’s truth. I hope it offers insight into the emotional terrain families navigate when answers are slow and dignity is compromised. Sometimes the kindest thing isn’t cure—it’s clarity. Its presence. It’s truth.


Intro Note

This post reflects on the final months of my Dad’s life in 2011. It follows the thread I began in 'Hurdle After Hurdle…,' and shares the truth I never fully blogged about at the time. It’s a reflection on what happens when care is delayed and clarity withheld.

It’s also a story of love, loss, and the beginning of a new chapter.


The Truth That Still Is

I blogged Dad's journey under Hurdle After Hurdle, with the last update on 21st April 2011. The hurdles were real—delays, dismissals, broken machines, missed diagnoses. But on reflection, Dad’s hospital stay was a rollercoaster. One that rattled, shook, and never let up.

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From 15 March, when Dad finally had his biopsy to confirm pancreatitis or pancreatic cancer, I began documenting every step. He came home sore and sleepy, and we were told to wait two weeks for results. That wait stretched into chaos—appointments were cancelled because consultants were on holiday, results were delayed, and referrals were lost between hospitals. 

I was fuming. I was exhausted. I was keeping eleven pages of notes. And I was kicking arse all the way.

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I presented Dad to A&E on Friday, 22nd April 2011, and Dad was admitted to the hospital. His BMI was 15. He was in pain, dehydrated, and fading. I spent most breakfast times with him, ready for ward rounds, hoping for answers. Hoping for plans. Hoping someone would see the urgency.

There was no peace.

A helicopter pad was being built near his ward.

Windows couldn’t be opened.

Machines bleeped constantly.

He was catheterised for bladder and bowel.

Regularly repositioned by nurses to prevent pressure ulcers, also known as bed sores.

Subjected to invasive tests.

Too weak to move.

Too tired to fight.

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By late May, things spiralled. Biopsies remained inconclusive. A laparoscopic investigation revealed fluid build-up, an inflamed pancreas, and no visible tumours. The surgical team never named cancer—only referred to pancreatitis, skirting around the possibility like a waltz.

But the signs of Dad’s chronic weight loss and ill health shouted cancer.  

Every biopsy expected to find it.  

But they didn’t.  

And still, no one said the word.

They inserted a JEJ feeding tube to help him gain strength. But he was vomiting blood. He was nil by mouth. He was on IV fluids, antibiotics, and an insulin pump. I wrote: “He is pretty poorly, and so at the moment, we're taking it one day at a time, hoping that a firm diagnosis will come soon.”

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On 30 May, Mum and I arrived to the hospital to find Dad surrounded by doctors and nurses, wrapped in a warming blanket, a heater placed at the bottom of his bed.

Dads lung had collapsed.  

His core temperature had dropped dangerously low.  

He was moved to ICU, placed in an induced coma, and intubated.

His body was failing. And still, he had to fight.

He shouldn’t have had to.  

He should have been cared for.  

He should have been given answers—even if it was the hardest answer to give.

The only direct comment had come months earlier, when a consultant told Mum that Dad had “the image of a dying man.”  

It was the same consultant who later ripped me apart in the corridor—for simply asking what the long-term prognosis was.  

"I wasn’t being difficult. I was being a daughter." 

A daughter trying to understand what was happening.  A daughter trying to prepare.  

A daughter trying to help.

But the only answer came when Dad died on the 1st July 2011.

Dad had been told his organs were shutting down, and so he made the decision to be made comfortable. My Mum was called to the hospital because Dad was "feeling a little low" and the first she knew was when Dad asked if she was ok with his decision. Everything after that became a blur, family were called, and one by one arrived at the hospital. 

It was only then that an end-of-life care plan was created.

Dad was just 64.

He was planning his retirement.

We were secretly planning a renewal of wedding vows with Mum for when they celebrated their 40th anniversary the following March.

Still no formal diagnosis.

Still no coordinated care.

Still no clarity.

While the consultant commented Dad had “the image of a dying man.”, it was the coroner—not the hospital—who told me that Dad had died from pancreatic cancer.

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After...

In the months that followed, everything changed.

I left a marriage that had long felt heavy with silence and contradiction. While I was helping Dad navigate pain and uncertainty, I was also living with someone whose chaos I could no longer carry. We remained friends for a time—he visited me when I needed surgery, we met for coffee—but something in me had shifted.

I moved closer to Mum. We were both grieving, both reeling, both trying to make sense of a world that no longer had Dad in it. It was the beginning of a new chapter. One without Dad, but shaped by his memory—by the quiet strength he carried, and the love that outlived the diagnosis he was never given.

That chapter became the foundation for everything I’ve built since—my advocacy, my sanctuary work, my refusal to let silence win.


🕯️ For Dad

Who deserved better.

And for every patient still waiting.



Hello again

Hello again—and welcome to the beginning of Life in Little Steps.


It’s been over 14 years since I last blogged here. A lot has changed—online and offline—but I’m returning with open hands and a willingness to adapt to the new landscape. I’ll slowly update on some of the changes, but for those new to here, I’d best introduce myself...

I’m Helen—a juggler of life in all its messy, glorious forms. I’ve been married, divorced, loved, hated, bullied, bereaved… all while living with a rare form of childhood arthritis, diagnosed when I was just two.

Life in Little Steps is exactly what it sounds like—my life, one step at a time. It’s also the name of the website I’m slowly building: a space for reflection, resilience, and gentle empowerment. I don’t have all the answers, but I hope that in sharing my experiences—my downfalls and my successes—it might spark a lightbulb for someone else. 

However you found yourself here, whether by search, stumble, or synchronicity—you’re welcome. So, please make yourself comfortable, grab a cuppa, and say hello.