I have now attempted to be discharged from Castle Hill Hospital on three separate occasions. Each time has been its own particular exercise in frustration. Each time I have told myself that surely this one will be straightforward. Each time the system has found new and creative ways to prove me wrong.
Friday 31st July. Discharge day. Again.
Alistair was off — which I already knew, and which already filled me with a low level dread I tried to ignore. He'd promised to leave detailed notes the night before: exactly what blood results were needed, what thresholds needed to be met, what needed to happen for me to go home. I have no doubt he did exactly that. The problem, as it so often is, wasn't the notes. It was whether anyone read them.
I had my bloods done early. I asked the nurses — many of the regulars were off, another Friday of skeleton staffing — to please chase the results, it was discharge day, I really wanted to go home. Yes, yes, yes, of course, they said. The usual chorus of reassurance that means nothing.
Around eleven o'clock I walked to the desk myself. Found one of the on-call doctors. He told me my blood results were back and he just hadn't had a chance to review them yet — he'd be free to see me very shortly.
An hour passed. Nobody came.
I chased again. Eventually someone came to see me and started talking about high calcium levels — said I'd need to stay in for the weekend. I told them there wasn't a chance in hell I was staying in for the weekend for high calcium. And then I pointed out that calcium wasn't what we were waiting for anyway — it was my kidney results and my liver enzymes. When I asked where those were, he told me they weren't back yet.
I said: you just told me my results were back.
He said: oh, sorry — these are actually results from two days ago.
So there we were. Lied to, again. Given someone else's results, again. Starting the day with completely wrong information from a doctor who had not read the notes that Alistair had left, who did not know my case, and who had confidently told me things that were not true.
I kept fighting. I kept waiting. I chased the meds. I was told repeatedly they were being organised. Around two o'clock, having given up on anyone coming to me, I started walking toward the desk with the intention of telling them I was leaving — with or without the medication.
At exactly that moment, Dr Ranatunge appeared.
She came to find me. Explained there was a backlog in blood results — they weren't back, despite what I'd been told. But she was happy for me to go home regardless, because the trend was clear and she fully expected the results to confirm what she already knew. She'd make sure my meds were being organised.
They weren't. Despite being told two, three, four times that they were ready, nobody had actually called pharmacy. I eventually walked to the pharmacy myself, asked if anyone from the ward had been in touch. They hadn't. The medication was sitting there. It just needed collecting.
I went back downstairs. Told them. Two more hours passed.
Six o'clock. Finally. Twenty-nine days after I arrived, I walked out of Castle Hill Hospital with a bag of medication and went home.
I should be used to it by now. I'm not. That final day left a taste in my mouth that I suspect will take a long time to shift.
The weekend
Home is strange after twenty-nine days away. The bed feels different — which sounds absurd, but when you've spent a month in a hospital bed your own mattress takes some getting used to again. Walking up the stairs burned my thighs, my hips, my hamstrings. Everything hurt from the simple act of being vertical and moving.
There was a lot to do. Unpacking. Medication sorting. The wifi had gone funny while I was away. The laptop — spoiler: dead, water damage, replaced. DBS check renewal for football. New kit organised for Dale Park Rangers' new season. Small jobs that pile up when you've been absent for a month, each one a tiny piece of normal life reassembling itself.
I rested in between. Ate simply. Tried to let my body remember what home felt like.
The first blood tests after discharge showed high calcium again. This time it was causing stress on the kidneys too — not dramatically, the kidney marker was at the high end of normal rather than anything catastrophic, but enough to be flagged and treated urgently.
They wanted to admit me.
I said no.
After twenty-nine days on that ward, after everything that had happened, I simply could not go back. I explained this to Sam in the toxicity team. I explained what the admission had done to my mental health as well as my physical health. She listened — properly listened, in the way that the ward had consistently failed to do — and agreed to treat me as an outpatient. Two litres of IV fluids that evening in acute assessment. Another litre the following day.
She also arranged mental health support. Something Ward 31 had failed to do despite me asking directly, despite it being in my meeting notes, despite it being the most human and obvious response to someone who had told them they were struggling. Sam sorted it in one conversation.
By Tuesday the kidney function was already improving. The outpatient approach worked. There was no need to be admitted overnight. I hope that's noted somewhere for the future.
A new medication — Cinacalcet — has been added to manage the calcium longer term, since the zoledronic acid drips alone haven't been keeping it under control. Low dose to start given the liver situation, but the right next step.
A day layer I turned another year older.
Given where I was this time last year versus where I am now, I'll take it.
We went to Leeds. I had lunch at Bundobust — one of my favourite restaurants, proper Indian street food done brilliantly. We played some games afterwards — ice curling, air hockey, the kind of afternoon that reminds you that normal life is still out there waiting. I was tired. I didn't care. It was exactly what I needed.
That evening Florence had made me a cheesecake. The family had presents. It was quiet and warm and completely lovely.
Forty-five years old. Cancer, Gamma Knife, seizure, immunotherapy, colitis, liver inflammation, calcium crises, twenty-nine days in hospital — and still here.
I'll take it.
Today couldn't have been more different to Monday.
Straight in. Blood test done immediately — no queue, no waiting, a small mercy that felt enormous after everything. Through to acute assessment to wait for Sam. A normal couple of hours for results.
And then Tom appeared.
Tom — the on-call oncologist who had come back at 7:30am after a 24 hour shift because something intrigued him, who had given me more useful information in fifteen minutes than a fortnight of ward rounds. He came over to where I was sitting in the waiting room, just to let me know that everything was looking good and Sam would be with me soon. Nothing to worry about.
He also said — and I'm choosing to take this in the spirit it was intended — "I think you come in more than me."
It's probably not the ideal joke to make to someone who's spent twenty-nine days on your ward. But I'd have made the same joke. And Tom making the effort to come and find me in a waiting room just to put my mind at rest, when he absolutely didn't have to — that's the kind of doctor you remember.
Sam confirmed the detail. ALT down to 201 from a peak of 2,500 — still elevated, normal is 34, but the direction is everything. Kidney function good — eGFR of 90, healthy. Calcium starting to respond — 3.09 down from 3.19, Cinacalcet doing its early work. Bilirubin 25, almost normal.
Green light for Potters. One condition — no swimming pools. Something about chlorine and being on every immunosuppressant known to medicine apparently not being an ideal combination.
So tomorrow morning we go. Potters Resort near Great Yarmouth — Hopton-on-Sea — with mum and dad, my sister's family, Lucy, Florence and Albert. A long weekend that we booked before any of this happened and have been holding onto through everything that followed.
I don't need to be back until Thursday next week for bloods and a discussion about what happens next.
What comes next. That's a conversation for another chapter. For now — I'm going on holiday.
