Post 103: Advocacy engulfed me and made me blue – again.
Two pages of recycled off-white A4 in an NHS envelope can be hard to unfold and read – but read it you must.
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The rain is falling at last outside in an invisible 2am cloudburst, which matches my mood exactly.
I’ve not pressed the send button yet, but I have an email drafted in response to the NHS letter. The complaint I made via PALS (Patient Advice Liaison Service) was investigated by the complaints team, and the result is, to me, a fudge.
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Three days on from the Carboplatin, and the world is still spinning away merrily with me and you on it.
Yesterday’s efforts in reposting the blog knocked down the wall that had surrounded me ever since the 99 posts were accidentally deleted and assigned to the digital equivalent of hell—never to be seen again.
It sounds so trivial to me now, but I was in a funk of massive despair—not just at the loss of the posts, but also the lovely, heartwarming replies. As I’ve mentioned before, they helped me through dark days.
Still, as one bus leaves, another one always follows—and the NHS letter was a bus I dreaded hopping back on.
The morning tiredness caught up with me, and after a bowl of sloppy Weetabix and the steroids that followed, I sat in the comfortable IKEA rocking chair (other rocking chairs are available), phone in hand, hoping for an easy day.
Mr Vicious had been fed and loved me all over again. I’d had all my other tablets - for now, and though my eyes were a little gritty, I wanted to sort out a proper response to the PALS investigation about that nightmare A&E visit back in April 2025—when chemotherapy had just begun and the clots appeared.
My trusty pint glass beside me—my only friend—didn’t help much except with hydration, as I contemplated the letter. I’d read every line now, right to the end in hope of a conclusion that might ease the knot in my stomach. But it only got worse.
I’m generally a positive person—especially for others. It’s something I hear often. But deep inside, my worry eats me up. Is it worry, frustration, anger, disappointment? Whatever it is, it grumbles away, distracting me, building a new wall around me I’m desperate to break through.
So, I converted the photos of the letter into editable text and compiled a long-winded summary of what I wished had been said. Then I pushed it into a digital chatbot.
Lately, I’ve found the strength to walk further than expected—surprising both myself and My Darling. It’s bloody-mindedness mostly, and maybe the remnants of my old machismo, left over from three years of hormone therapy. But re-reading the NHS letter exhausted me.
Let the bot read it, I thought. Let it help lift me out of this funk.
And in less time than it took me to sip my water, the bot had done it—answered my questions, drafted a plan. Blimey. Amazing.
Suddenly, in front of me, was a clearly written reply I could personalise and send (It took hours to fine-tune a draft I could live with. The bot is clever but not flawless—devil’s in the detail, and this reply is too important to get wrong.)
My Darling came down, blurry-eyed and still headachey, and saw me sitting quietly in the corner. She proposed a walk into town for milk and supplies.
“You’ve run out of blue-top. And we need salad, too.”
“Yes please!” I said, delighted. “Anything to get me out and into the fresh air. I’m ready when you are.”
I’d had enough self-advocacy for a while. There was more to do, but a clear head would help. So off we set—our usual mile or so—via a cool, overgrown shortcut fragrant from last night’s rain.
At the supermarket, My Darling told me to stay-put on a sunny bench like a dog on a lead—I was only too pleased oblige. What an obedient Mr U I can be (when it suits).
I took out my phone and reread the reply the bot and I while trying to keep today’s mental anxieties from swallowing me whole.
The original complaint was over two months ago, but the stinging chest pain from the PE (massive bilateral pulmonary emboli) returned with every word of that NHS letter. Will I ever really get over it?
The more I think, the angrier I become. The anticoagulants I wasn’t given could have avoided that life-threatening moment. My self-advocacy here is about a lack of joined-up thinking by my oncology consultant—that’s the nub of it.
Why can’t immensely talented consultants ask for advice from other immensely talented consultants when cases get complex and go beyond their expertise - and then talk me through the process. Not just to tell me the answer - I need the workings out please.
Answers on a postcard.
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With the shopping done, My Darling reappeared and pulled me back from my horror memories. Her tired face told me enough, and I helped her hoist the backpack onto her shoulders. I didn’t argue to carry it—because the silly argument that would follow wasn’t worth the energy. But 100 yards later, seeing her strain, I volunteered to carry it, and she let me—without the silly row we might have had earlier.
Sometimes, the weight of cancer travels in more than the body—it rests in your mind, and on your partner’s shoulders and mind too.
The help I get from the Macmillan Forum is a gift, but the tiredness never really leaves. It greets me morning, noon, and night.
I see it on My Darling’s face every day. In everything we do. Holding hands on the big blue sofa, walking together, cuddling in the kitchen—it all feels more intense now. There’s a quiet shift between us. Unspoken little moments that whisper:
“I’m here. Don’t worry. You’ll be okay. Trust me.”
I can’t quite tell whether I feel happy or sad in those ever-so slightly lengthening hugs—maybe it’s both.
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After a healthy lunch with some home-grown tomatoes (not ours, I hasten to add, but kindly gifted by a neighbour), we had a string of video calls in the afternoon with family from across the globe.
Lovely. Time-consuming. Rude to say that, perhaps—but we had planned to rest on the big blue sofa and catch up on our K-dramas - the cheek of them, ha-ha.
We chatted about life’s ordinary things, which was great—but in the end, I couldn’t hold the emotions in. They burst out while explaining the health updates from my mouth they were hoping to hear. I tried to keep it upbeat, to make it sound positive. Technically, a little white lie. The elephant in the room sat quietly beside me… it follows me from room to room.
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More calls followed during and after dinner. We did eventually catch up on the K-dramas and rest up.
My advocacy response—at long last—was ready to send. A small victory. I could breathe again.
I’ll read it one last time in the morning after the MRI scan at 8am (this morning, yawn!) before I hit send. This is about my near-death experience. It shouldn’t have happened. It’s very important to me - close to my heart (pun intended but not appropriate).
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I live in hope that my complaint might one day inspire a regulation that ensures hospital consultants must use a joined-up process for complex cases.
Maybe it already exists in principle, but not in practice.
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I’ve just woken My Darling with the glow of my phone screen and the gentle tapping of keys.
I’d better finish up - it’s now four thirty am. I’ve got to get up soon and My Darling will kill me if “you don’t put the bloody phone down and get to sleep!”
Goodnight.
Another post, another chapter processed. Another small act of courage.
We are brave. We are strong. We are anxiously glancing over our shoulders as we run from the scourge.
But we are still running. Still going.
I’m back on my bus, heading toward the next infusion.
I promise to be happy today.
Be happy too. 
️
