You ever wonder how deep you could sink into nothing at all?
There are always multiple ways to frame situations in life. When the oncologists told me straight after my first ‘all clear’ scan that I needed to have my chemotherapy port removed from my chest, I could have chosen to take this as a positive. Surely they wouldn’t be requesting it to be taken out if they had any major concerns about my health. A few people I know have responded with this logic upon learning that the oncology staff want to schedule taking the port out, and I’m happy for them. I, however, am not one of them. To me, them telling me that my port can be taken out is them alluding to the fact that if the cancer comes back, I’m totally fucked and the port won’t make any difference whatsoever.
Having a port in your chest also comes with some increased health risks, so I think the actual reason they take it out is far simpler and more straightforward – it is just the process. If you aren’t on active chemotherapy, and the port is not being frequently ‘accessed’ (that is medicalese for a needle being plunged into the port in your chest, before pumping things into it; they aren’t small needles either), then dry blood can cause issues with it, causing the line to become useless. The device also increases the chance of a blood clot occurring, but only by a very small percentage. When I got it put in, the nurse putting it in told me that in other countries they don’t have a policy stating that they need to come out again once inserted and that they tend to leave them in for the rest of that person’s natural life. That sounds lovely. I bet those countries have more sun than we do in England, too.
To give some context, in case anyone reading this feels like they didn’t get the memo on what these ‘ports’ things are… A ‘port’ is a Portacath. It is a small silicone device that is inserted under the skin in the chest, that is connected to a line. When they put it in, they insert the line into a major vein in the neck, running it under the skin from where the silicone device is, north of your chest and into the vein. You can actually see it through the skin.
They are put in with local anaesthetic administered to the neck and chest area and I can confirm, it is pretty uncomfortable. Nowhere near as uncomfortable as having an endoscopy, but this isn’t Medical Procedure Top Trumps. They’re all terrible in different ways. I wrote an account of the procedure in an old post, actually, so my more dedicated and long-standing readers may already be aware of that, but it was ages ago. I’ve also written about my experience of having an endoscopy too, but that is a memory that is deeply entrenched in a dark corner of my psyche, and only comes out to play when my mind feels like re-traumatising me in the form of a bad dream or a rough mental patch. I have spoken to the odd person about their endoscopy and they’ve told me that they didn’t find it too bad… Although I respect these people tremendously, they really do need to have a mental evaluation to make sure that they are Ok. Despite an endoscopy being required to diagnose me, which makes me enormously grateful for its existence, it is, essentially, a torture method. I don’t fully remember the whole thing due to the sedative they administered to me before starting, but I remember black bile leaking out of my mouth, and the sensation of choking on my own sick whilst I struggled to breathe. Where else would you hear those kinds of things? Correct – a prisoner’s account of being tortured!
I was supposed to have the port taken out straight away once I was told that there were no signs of cancer anymore, back in February, but I asked if they could wait until after the next scan. It felt like tempting fate to take it straight out, and I was suspicious that the staff knew something that I didn’t. Why were they so sure I wouldn’t need it again? Am I actually fine now? No one will tell me I’m fine – I keep being told that I have to “live with cancer” for the next 5 years. Turns out, oncologists just really hate telling people with pancreatic cancer that they might survive, and like to adopt phrases such as “it’s a really difficult cancer.” I know that it’s a difficult cancer – I had it / have it / am living with it / am sick of thinking about it – I’ve seen plenty of things alluding to the difficulty of this cancer. I don’t actually know where I’m at with it. But I’m definitely living with it in some way – it won’t leave me alone.
Well, today was the fateful day. The port was coming out. I had already rearranged the appointment once, as I received the call about scheduling it approximately 10 seconds after leaving the oncologist’s office after being given my scan results. It was in that very meeting that I had reminded the oncologist that it needed to be taken out, so either the schedulers are mediums or the oncologist pressed his panic button under the desk, which must flash an emergency light in the scheduler office, allowing him to bash out my name in morse code for her to then find me on the system and call me to make the appointment. They also might just have had a working phone system, and the oncologist called them straight away, to ensure that it was scheduled before anyone forgot. It was probably the Morse code theory.
I chaotically said yes to whatever words came out of the scheduler’s mouth. Then, upon hanging up, realised that the time I had scheduled did not agree with my work calendar whatsoever, and that I’d need to reschedule. The problem was, this was Thursday and I was off work on Friday, and I’d just received some positive scan results. So I did what any respectable person would and waited until Monday to do anything about it, just over 24 hours before my appointment time. They were very accommodating, luckily. They had every reason not to be.
I’ve learnt to be a certain way before these types of events. It’s somewhere between tentative and apathetic. The resulting state is one where I waltz through the day or two before the procedure, never fully thinking or worrying about it, but never not thinking or worrying about it too. It is an ever-present threat which lodges itself in the brain. I know it won’t hurt, but it isn’t that which causes me to linger on it so much. Who wants to have their chest cut open and a device, which is connected to a major vein, yanked out? The same group of people who think endoscopies are bearable – of course. The whole thing just gives me the ick.
Getting it out is a different affair to having it put in. When it was put in, a plastic piece of material was used to stick the side of my head to the table facing the opposite way from the procedure. This time, a plastic pad was stuck to my chest, allowing the nurse to operate whilst keeping it as hygienic and mess-free as possible, but I could have, if I wanted to, picked my head up off the table and looked straight at what was happening just 10cm from my head. Of course, I didn’t, as that would have been an instant pass-out for a weakling like me. But I could have, and that felt empowering, when I eventually thought about the fact that I could have done that, half an hour after the procedure had finished. I didn’t have the guts to think about it during the procedure – I was bracing for dear life.
Last time, when it was inserted, I had to have a series of injections that were really painful to kill off the feeling in the area, but this time it was sprayed with something. Initially, it gave a cool sort of sensation, which then advanced to a sting, then, nothing. Perhaps the nurse injected something afterwards, but I didn’t feel it if she did. What I did feel was a couple of sharp twinges early on deep in my chest, shoulder and arm. I couldn’t tell what she was doing, but at one point, one of them made the right side of my body flinch involuntarily, and I started to profusely sweat. I let out an awkward sound, and she confirmed that I couldn’t feel any pain, only some “disconcerting poking”… It didn’t make me feel better. She was doing her best to keep talking to me, and I was impressed with her commitment to trying to distract me, but I was laying back with my eyes closed at this point, and wasn’t really responding.
After 5 minutes or so, most of the uncomfortable feelings had gone. I assume that she had done the gross part at this point, and was just doing the admin work – the stitching of the wound and whatever other things she fancied doing whilst in there. Taking a look at my tattoos from the underside of my skin, dropping a little M&M in there maybe – disinfected, of course. The whole thing probably took 20 minutes max. I sweat so much that I felt concerned about it. Should I be embarrassed? I made some awkward remark about it. “I sweat more during that than I have for the rest of the year so far,” I mocked, trying to address the elephant in the room, and she peeled off the material that was sprawled over the bed. During the mop-up chemotherapy, I was sweating so much that I started wondering whether its purpose was to try and sweat the cancer out rather than kill the cells themselves. It is still a running theory of mine.
Now, as I sit on the train back to London writing this, the area does feel quite sensitive when I move it. I’ve taken paracetamol, which I’m convinced doesn’t do anything, despite having experienced what the liquid form of it does when administered directly into the bloodstream – it’s a totally different drug when it is administered like that. The tablets don’t seem to do anything. I’ve got a bandage on it which has to stay there for a week; once that is over, I get to take it off and pull off the paper stitches – fun! Something to look forward to, I guess.
I had a bit of a strange weekend mentally. Friday night I had a minor panic attack in bed, and tried to wake my wife up, but she was too asleep to care. Totally fair enough, it was 01:00 in the morning. I managed to navigate it, but it was a little weird. All of a sudden, as I lay there trying to fall asleep, I started having some really dark thoughts. It genuinely felt inescapable and for a second, I had no idea what to do to make it better. I grabbed my dog, Lucy, and held her in my arms whilst she absently groaned at me. She nuzzled her head into my armpit as I lay on my back. It made me feel a little better, and I reminded myself that I’ve been through a lot worse over this past year. I’m actually cancer-free right now – which is an amazing place to be. It is a place that I never thought I’d get to this time last year when I was receiving my end-of-chemotherapy scan results, and the surgeon was telling me that he didn’t think he would be able to get rid of the tumour.
Holding Lucy did help eventually, and I fell asleep. That temporal period of panic has stuck with me, though. It frustrates me that I have more episodes like this now I have some semblance of hope, as opposed to when I was in the middle of treatment and felt utterly hopeless. Trying to move into the rhythm of having a normal life is just difficult; I don’t know why, but it just is. I still don’t truly believe I’ll actually survive. I’m sure it’s to do with that. I have to force myself to acknowledge that it is a possibility now, even if it is still an uphill battle. How long can I spend worrying about something that hasn’t even happened? I find myself diagnosing myself with a reoccurrence only a few weeks after a clear scan, whenever I feel any symptom whatsoever. I’ve been moved onto 6-month scans. Surely that’s a good thing, even if the oncologists don’t specifically say so?
The weather is getting better and I have a busy few weeks ahead, so there is plenty coming up that will help to distract me, it’s just about maintaining the energy levels to enjoy it all and not totally crash. Now I’m portless as well as cancerless, maybe I’ll start to accept the distance that is forming between me and my diagnosis, rather than longing after it in some weird, backward way, where I feel more vulnerable with the more that time passes. The surgeon’s voice keeps ringing in my head loud and clear – “Not many people beat stage 3 pancreatic cancer,” I remember him saying. I too easily forget the other thing he said to me – “you have gotten this far against the odds. There’s no reason to believe that you won’t continue to beat them.”