Month: February 2025

I had an appointment with my doctor today, and I heard the words: “We no longer consider you critical.” That took some processing. It’s good news, of course. I’m still on the curative track.

I have some tricky surgery coming up, so now it’s all about preparation. I finally understand the timelines I’m dealing with, and honestly, they’re pretty good. If all goes well, I should be out there bugging people to come out and play by summer.

So why do I feel so… meh?

I haven’t fully figured it out yet. Part of it might be that I never really expected a different outcome. I knew things could go another way, and I understood the numbers, but I’m not a natural worrier. I don’t tend to stress over things I can’t control. I focus on doing what I can to get the best results, then I move on. Maybe that’s playing into how I’m feeling now.

But it’s more than that. There’s a lot more to me than just my physical state, and right now, it’s not my body that’s struggling—it’s the other, less tangible stuff. It’s how I feel.

I’m tired. Tired of being tired. I have so much time on my hands, yet no energy to do anything with it. It’s frustrating. And boredom? That just fuels the cycle, making me feel… I don’t even know what. But it’s not great.

I wrote a while ago about misunderstanding ‘the fight.’ I see now how wrong I was. Every day is a fight—but strangely, it’s a fight with myself. A fight to get up, brush myself off, and go again. Some days, I win. Some days, I don’t. And on those days, I feel guilty for not pushing through.

On the bright side, I’m getting really good at Call of Duty. So, there’s that.

This story caught my attention tonight on BBC News. Essentially its the Doctors saying our care provision for cancer within the NHS is inadequate.

Weirdly, I don’t feel qualified to answer this with any real insight. The whole thing about anecdotes not being data applies I imagine. If, however, you can accept that perhaps I may not be as objective as I normally try to be, I can proffer some opinion.

Firstly, let me very clear in a way that I wasn’t in a very early post that got me some online grief. I have never, not even once, come across somebody in my whole experience who I felt wasn’t trying to be helpful. Any criticism I offer here is around the system, not the people.

Now, the bit that really sticks out in this story for me is this bit:

This bit I can 100% and completely agree with. The difference in care and provision I’ve received between Barts Health NHS Trust (Royal London Hospital etc.) and Kings College Hospital NHS Foundation Trust has been beyond explaining. My early experiences with Barts – now I’ve experienced KCH – were awful. Every appointment hugely late, getting hold of the right people always a challenge.

To give you an idea, back when my situation first started in early 2024, I was given a referral to Urology. That appointment still has not happened. I had one phone call where a hassled man talked at me for about 4 minutes, told me he’d arrange a face to face…and all I’ve had since is letters cancelling and rearranging the appointment.

I’d have gone insane if the level of pain I was in really was down to something urology would have dealt with. It gets even more bizarre that I’ve emailed & rang a few times to tell them I don’t need to see them, but the cancellation and rearranged date letters still keep arriving.

There’s an air of chaos around Barts, and also Guys & St. Thomas’ when it comes to cancer care. An air of chaos that simply does not exist at KCH.

It is the compliment of the care I’ve received from KCH that’s made me realise how awful Barts was – please, before the messages, refer to what I said above about the people. I don’t mean them.

Whenever I’ve had to visit KCH every appointment has happened usually within 10 or 15 minutes of the booked time, and they’ve never been rushed. They’re also excellently prepared and seem to have access to all of my notes. My ending up at KCH quite literally, and without any drama, probably saved my life. It was the first time in an age I felt listened to, and they took their time to work things through with me. I was admitted the afternoon I turned up, and over the coming week the A&E consultant who admitted me also checked in to make sure things were moving.

I couldn’t have asked for more.

Anyway, it’s incredibly obvious to me – as a layman – that the funding levels between Barts and KCH must be hugely different. I can’t think of another reason for the difference in care levels.

Moving on slightly, I also think I’ve been very lucky to fall under the care of Oncologist who actually seems to care. I won’t name her, but she has been utterly fabulous in the way she’s helped me through this.

This seems to be my experience too. I was utterly lost and in substantial pain until I happened up on KCH.

How to fix this, or understanding what the causes are, are well above my pay grade or understanding, but I have a lot of sympathy for people who have not found the right path. The difference in my day to day between Barts & KCH is astonishing.

Anyway, this feels like I’m ranting. I am absolutely not – if anything, I’m sympathising with a system that’s struggling to cope.

If I had some advice – some advice I wish I’d have taken – if you’re not getting what you need please, please go somewhere else.

I’ve been quiet lately, and I know a few of you have been wondering what’s going on. The truth is, it’s not that I’ve been busy—I’ve just been filling my time with things that aren’t really moving me forward. My days seem to blend together now, and if I’m being honest, I sometimes forget what day it is at all.

Not long ago, I was someone who prided themselves on being a champion sleeper — only 5-6 hours a night. Now, I’m struggling to even get to bed. I’m often staying up well past 4 AM, which means I’m not really seeing the daylight until after lunchtime. It’s a strange shift, and I think it’s largely because my schedule’s been so empty. When I have things to do, I tend to get up and get things done. So, I’ve been making a conscious effort to fill my days with more tasks, and it seems to be working—I think this might be the first year I’ve ever submitted my tax returns early.

But that wasn’t the question I was asked. The question was: How am I doing? What’s going on?

I’m honestly flattered that so many of you care enough to check in. It’s a tough question to answer, but here goes:

I’ve mentioned before that I’m hoping to come out of this experience with a more positive perspective on people. I can see now how many of my past “reads” on others were way off. I still misread people, of course, but I’m learning to adjust my expectations and outcomes. Sharing this with you feels strange, though. I’m not totally sure how I feel about opening up in this way, but it’s out there now, and I’m rolling with it.

So, how am I, really?

Physically, I’m stronger than I’ve been in a long time. I’d say I’m about 80% back to normal. Pain has become more of an occasional discomfort than something I deal with every day. I’ve learned to manage things better, but I’ll admit, the boredom and lack of structure are starting to get to me. I’m not handling the lack of motivation very well, and it’s certainly keeping Amazon busy.

Mentally? That’s another story. I’m more exhausted in my mind than my body. It’s hard to explain, but sometimes things seem so overwhelming—even though I know I can handle them physically. It’s a strange new experience for me, and I’m working through it. Usually, my stubbornness is my superpower, but right now, it feels like my coping mechanism is failing me. I’m trying to figure out a new way to deal with things, and I haven’t quite nailed it yet.

The good news is, I’m aware of it, and when my brain tries to drag me into “The Funk,” I give myself a stern talk and push through it. Mostly, that works.

What else? Well, my radio-chemo wrapped up in December, and I’m getting closer to the end of the waiting period for the next steps. I had a CT scan recently, and after that, they moved my pre-surgery MRI up by almost a month—this weekend, in fact. Apparently, that’s a good sign. I didn’t totally understand the explanation, but it came from someone I trust completely, so I’m rolling with it. After the MRI, I’ll meet with the oncologist and her team, and then I’ll head into surgery to finally package up Percy and fire it in to the f***ing sun. I’m feeling calm about it all. As you can tell.

I do have a small gripe, though: I often get appointment reminders with no explanation. I’ll be called in for a CT scan, and then two days later, I’ll get a message saying, “Your MRI is now this Saturday—don’t cancel.” For a second, I freeze. I understand they deal with this stuff every day, but a little more context would go a long way. It’s confusing and, honestly, a bit unsettling.

I’m still unsure where I am on the path to surgery, and I think that uncertainty is contributing to some of my frustration. For example, I recently agreed to take on some design work, but I couldn’t commit to the delivery. Now, the team’s asking me to help with the delivery, and they seem confused when I keep saying no. It’s not about money, but they seem to think it is —I just don’t feel strong enough right now, and I don’t want to start something I can’t finish. Plus, it’s Cisco, so there’s that.

So, where am I? In short: Positive CT results, MRI on the horizon, and surgery waiting in the wings. Physically stronger, mentally drained—but I can see a sunny beach on the horizon, if that makes sense.

I’ve also got to mention my family and friends—they’ve been amazing. I know I can be tough to understand at times, even when I’m in a good place, so I can only imagine how hard I’ve been this year. But they’re here, doing their best to hold me up, feeding me snacks, and making sure I never run out of milk. Honestly, I’ve never felt more loved in my entire life.

So, that’s where I’m at. Mentally tired, physically stronger, but surrounded by people who make it all worth it.