There is a particular kind of frustration that must only exists in hospitals.
It isn't the frustration of pain, or fear, or uncertainty — though all of those are present too. It's the frustration of a system that is simultaneously extraordinary and maddening, staffed by people who range from genuinely exceptional to genuinely baffling, often on the same ward, sometimes on the same shift.
Let me start with the good. Because there is a lot of good.
The majority of staff at Castle Hill — I'd say ninety five percent — are ten out of ten. Warm, knowledgeable, attentive, genuinely caring. The day shifts in particular were remarkable. Questions answered clearly, medications arrived promptly, you felt seen and looked after in the way you hope you will be when you're lying in a hospital bed with a drip in your arm.
And then there were the nights.
Night shifts were a different experience. Paracetamol — two tablets, something any of us could pick up at a petrol station — could take hours to arrive. Simple questions went unanswered. It felt, at times, like being invisible. I understand the pressures the NHS is under. I genuinely do. But when you're lying awake at three in the morning in pain, waiting for two paracetamol, it is very difficult to hold onto that perspective.
The other challenge was continuity. A different doctor every single day. Each one arriving with limited knowledge of my case, asking questions that suggested they hadn't read my notes, making suggestions that would later turn out to be completely wrong.
I should address the doctor we have been calling Weird Doctor in previous chapters. His name is Dean. He is absolutely fantastic — one of the top tier doctors on that ward. He gives straight answers, he actually knows what's happening, he treats you like an intelligent adult. I will not call him Weird Doctor again and I apologise for the nickname. Dean is excellent.
The rest, on the whole, were less excellent.
The most alarming example came when a doctor — I assume junior, though it was hard to tell — came to give me feedback on my MRI scan. He sat down and asked if I'd like to know the results. I said yes. He told me that five of the six brain lesions had responded well to the Gamma Knife treatment. One, however, had shown some swelling and what he called staining — evidence of some bleeding.
That is, as you can imagine, quite something to be told.
What I didn't know at the time — what nobody bothered to mention — was that the MRI had been taken at four weeks post treatment. The expected assessment window for Gamma Knife outcomes is six to eight weeks. The scan was taken far too early to draw any meaningful conclusions. The swelling and staining he was describing is entirely normal at four weeks and says nothing definitive about treatment success or failure.
I found this out on Monday when Dr Ranatunge came to see me.
She was not pleased.
"You should never have been told that," she said. "It's far too early to be assessing the outcome of your Gamma Knife surgery. Nothing to worry about at all. What you were told was worrying and should never have happened."
She put my mind at rest immediately. But I had spent several days carrying information that was at best premature and at worst deeply misleading. I still don't entirely understand how that happens. I hope it doesn't happen to anyone else.
The nights brought their own particular challenges.
Around midnight one evening I was woken and asked if I'd be willing to move rooms. There was another patient who needed the space — an end of life situation, I was told. His family wanted to be with him and needed the room.
I said yes without hesitation. Of course.
They moved everything — my bed, my chest of drawers, my bags — out into the corridor while the transfer was arranged. I was wide awake, watching it all happen, trying to work out what you say when you find yourself in that situation. What do you say to a family in that moment?
As it turned out I didn't have to find the words myself. As I was being moved, a man who I assumed was the patient's father approached me in the corridor. He must have been around seventy. He thanked me for moving. And then he said — quietly, simply — "My son doesn't have much time left."
I said I was so sorry to hear that. It was all I had.
He nodded. And then he turned and hugged what I think was his daughter, just outside the room where his son was being moved. Five more family members followed them in.
If that man's father was around seventy, then his son was around my age. Or younger.
I lay in my new bed in my new room and thought about that for a long time.
My new roommate was called Geoff.
Geoff, I discovered, was on his fifth type of cancer. Jeff had therefore immediately surpassed Alan — my previous roommate, who had been on his fourth — in what I can only describe as a competition nobody wants to be winning. Geoff was currently dealing with blood and pancreas issues and had recently been diagnosed with diabetes, which meant he was just beginning to get his head around insulin shots on top of everything else.
He was also, like Alan before him, an absolute gentleman. A local man, lived twenty minutes from the hospital, big sports fan — football and rugby both. We had some good conversations. We were both, if I'm honest, absolutely desperate to go home.
Sunday brought Dean, and good news. Everything was moving in the right direction. Calcium still elevated but being managed. Colonoscopy showed no obvious colitis — more likely a side effect of the immunotherapy than a separate condition. Steroids were working. I could go home Monday.
I packed my bags that night. I was ready.
Monday morning a doctor arrived. Not Dean.
He looked at his notes and told me, with complete confidence, that I was going home tomorrow. Not today.
When I pointed out that I had been told yesterday I was going home today he looked at me with the expression of someone encountering this information for the first time — which, to be fair, he probably was. He then asked me what the next stages of my treatment would be, specifically around the MRI.
I told him that was one of my questions for him.
He clearly knew nothing about my case. I asked if I could see a different doctor. Someone went to find one. Nobody came back. I asked again. And again. And again.
At one o'clock I walked to the main desk, asked who was in charge, and told them I would be leaving at five with or without my medication. I said they had four hours to sort it out.
Within fifteen minutes things started happening. Phone calls were made. Paperwork was progressing — had apparently been progressing all along in the background, just without anyone telling me. Medication was ordered. Discharge confirmed.
Sometimes you have to be your own advocate. I shouldn't have had to be. But there we are.
My mum and dad were waiting at the nearby Toby Carvery — having a late lunch, early dinner, ready to come and collect me the moment I was released. It was, in its own way, a rather lovely image. Two people who had driven from Essex, watched their grandson's football team on Saturday morning, visited me on the ward twice over the weekend, and were now sitting with a roast dinner waiting for their son to be discharged from hospital.
What I hadn't fully appreciated until this admission was the severity of what had been happening. After my brain seizure I had been on 16mg of steroids daily, which I thought was an enormous amount. During this admission for the colitis I was on 100mg. One hundred milligrams. The colitis, left untreated, risked severe dehydration that could have been life threatening. The steroids they pumped into me were not precautionary — they were urgent and necessary.
That puts the week in a different light. It was serious. The team treated it seriously. And it worked.
I left Castle Hill on Monday evening with oral steroids, a prescription for a cream for the rash, and a Thursday appointment at the toxicity clinic to check everything was settling before the weaning process could begin.
Immunotherapy — originally scheduled for the following Tuesday — would be delayed. The steroids needed to come down first. Two weeks, all being well. Then we reassess.
I asked Dr Ranatunge whether we would move from a double dose to a single dose going forward. She said we'd see how everything went. No fixed plan. Just wait and see how I respond.
I can live with that.
Since being home I've noticed something unexpected — my vision has gone slightly blurry, which appears to be a side effect of switching from IV to tablet based steroids. A visit to Amazon and a pair of reading glasses later, the blurriness is manageable and the headaches I'd been having have largely disappeared. Every problem has a solution, even the ones you don't see coming.
For now — home, resting, cooking, recovering. The World Cup starts Thursday. The beef shin is went in the oven yesterday morning. The next phase of immunotherapy waits on the other side of two weeks and a steroid taper.
One step at a time. As always.
