No viable tumour cells…

So March 18 has come and gone, just like Miguel, that shitty pain in my ass.

As we were driving to the hospital ready to be checked in, I received a call advising me that my surgeon was running early and could I get there ASAP. I replied that I was looking at the sign to turn into the hospital and would see them soon.

Lyndell dropped me off and parked the car and came to meet me later. No sooner had I given them my name was I given two wristbands, asked a buttload of questions (they were most happy that I told them I’d shaved my bits) and given a gown to change into.

Next thing I know I go out to see Lyndell, my sister who had flown down from Brisbane and my parents in the waiting room, and we were ushered into another room where I was allocated a bed and given some stylish stocking to prevent blood clots forming in my legs during surgery. As if that wasn’t enough, they also fitted me with inflatable calf cuffs that would inflate/deflate throughout the operation.

I thought that I would have half an hour or so with my family but it was not to be. In what seemed like less than 5 minutes, I was waving goodbye as I was wheeled towards the butchery.

I met my anaesthetic team who were hilarious. Sensing that I was anxious as all fuck, he gave me some Midazolam which he referred to as a couple of cheeky pale ales. My sort of doc. Then I was wheeled into theatre to be met with what seemed like a cast of thousands and more machines than I’ve ever seen in my life. I commented that it reminded me of the opening scene of “Monty Python’s The Meaning of Life” and asked if they had the machine that went ‘BING’. True to form, my anaesthetist laughed while the rest of the people, including my surgeon, looked at me like I was speaking Greek. I then recounted the scene, although I can’t remember how far I got into it because I was given propofol, aka the ‘milk of the gods’ and I commenced a long nap.

Unbeknownst to me, poor Lyndell was receiving no joy in terms of updates, other than “he’s still in surgery” or “he’s just come into recovery”. We all thought that because I was taken to theatre so much earlier, that I would be out sooner, when in reality, they didn’t start the surgery until the allotted time. Unfortunately they didn’t tell Lyndell that and she thought the surgery was taking much longer than expected, and of course, fearing the worst. I’m grateful that my sis and parents were there to keep her company, I can only think of how terrifying it was when Annabelle had her surgery and that was only for an hour. To say she is a trooper is selling her short and then some.

Anyways, my next memory is waking up the following day, where I apparently enquired whether KFC delivered to the hospital. The tube shoved down the back of my nose and down my throat however suggested that I would not be having the dirty bird anytime soon.

All was going well and I even managed to get out of bed and shuffle the 15m to my new room, which was agony and the hardest thing I’ve ever done in my life. The sponge bath that followed made up for it somewhat.

My surgeon visited and informed me that the surgery went exactly as planned, and that he had examined my liver and that there was no metastasis, which was my greatest fear, particularly when I looked down at the surgical dressings and it looked like there was a wound which my anxiety based research showed me was present after a liver resection. He also informed me that he thought he had got clean margins, but that in order to be absolutely sure, he had performed an ‘Ultra-Low’ Anterior Resection (uLAR), instead of the planned LAR. I haven’t had a chance to ask him yet because that can mean either my whole rectum was removed (which has flow on effects once my ileostomy is reversed), or whether it is simply below the pelvic plane). Hopefully it’s the latter, but I’ll know more when I have my follow-up consult with him.

Morphine: Geoff says ‘yeah but no but yeah but HELL NO MOTHERFUCKER’

So as anyone who has had major surgery will tell you, when you wake up you have a nifty little pump thing called a PCA or Patient Controlled Analgesia. Having been previously informed that it was impossible to overdose, and being in fucking agony after my trek down the hall, I pumped that thing with reckless abandon, unfortunately a little too recklessly.

Lyndell left to come back later as I was sleepy and I dozed off. Unfortunately, my sleep was so deep that when I awoke, I was surrounded by hundreds (ok that’s a tad of an exaggeration) faces yelling at me. I was delirious and thought I was in another hospital. I could see my parents and sister but the rest were just unknown faces. It turns out that, unbeknown to everyone, Geoff and Morphine are not the best of friends and my tolerance is somewhat lower than normal. Apparently I was ‘unresponsive’ for quite some time, and they needed to give me a dose of Narcan, or Naloxone, which is the stuff paramedics give to junkies when they OD on heroin. All I can really remember is shivering like I had been stuck in an avalanche for a week and basically feeling like I was stoned off my fucking chops. Fortunately, Lyndell was there to see me, but unfortunately, my parents and sister were. I later found out that I had a Glasgow Coma Scale score of 3. I’ll let you google what that means, but suffice to say, shit was pretty real for a while there.

That evening they reduced the dosage of the Morphine, and increased the lockout period (the time between which you can press the pump and the drug is actually administered) and again assured me that it was now impossible to OD. Needless to say, I was reluctant to take their advice and I pressed that little fucker considerably less than I probably should have.

The worst part of that experience, other than, you know, being close to death an all, was that they moved me to the room directly next to the nurses station. That was brilliant during the day, but fucking terrible at night, as the Ward seemed to convert into a shitty gossip hole where each respective shift of nurses would bitch about the previous/next shift of nurses. The result was no sleep and surprisingly, given my proximity to the nurses station, shit customer service.

Good Nurse/Bad Nurse

By and large, the nurses who looked after me were fabulous. Perhaps most interestingly, was that one of the best wasn’t even a nurse yet, she was still at uni. The general rule was that the morning/day shift were fabulous. Massively attentive, kind, and really friendly. They really made lying naked in a hospital bed, unable to move with anything that resembled speed or grace, a palatable experience.

Particular shoutouts should be made to Hayley, Jess, Liz, Gemma (the student), Tracey, and my ostomy nurses.

Liz and Gemma stayed behind after their shift ended and guarded my room so that nobody could come in and try and remove my drain without my consent after it was realised my drain was stuck (see below), Tracey convinced the on-ward doc to allow me to remove my NG tube so that I could feel like I wasn’t suffocating to death (see below) and my ostomy nurses made the confronting reality of having an ileostomy bag that much easier to deal with.

The ‘Bad’ nurses were like demon spawn.

One thought it would be hilarious to recount my overdose in front of my parents and talk about how close to death I was. What makes that even more offensive is that my mother is wheelchair bound and completely unable to talk/express herself thanks to a terminal neurodegenerative condition. So here is my beautiful mum, crying while this banshee scrag of a bitch prattles on about my OD. I politely told her that I was fine for the moment and didn’t need anything and could she leave so I could be with my parents.

The worst one however, Annette (I won’t publish her surname as I am lodging an official complaint with the hospital and I don’t want her to find this blog and perhaps sue me for defamation, even though truth is a complete defence to such a ‘charge’.

Annette was a lying, cold hearted cow whose soul, if she had one, would be blacker than crude oil, mixed with carbon and sprinkled with coal dust. I had the misfortune of having her on a number of days in the afternoon shift, which finished late at night/early hours of the following morning. Below is a summary of her indiscretions:

  • ignoring a request for pain medication/water to take meds with
  • ignoring a request to change my bed while I had a shower, resulting in me stripping my own bed
  • leaving me sitting on a chair waiting for my bed to be made while she wrote up some notes because that was way more important
  • huffing and muttering under her breath when she ‘had’ to make my bed because I couldn’t do it myself
  • lamenting about how terrible the patients on the ward were and how demanding they were as I was wheeled back from recovery following my drain being removed under sedation
  • essentially slamming my pain medication down on the table and then flouncing about when I asked for some water to take them with
  • skipping medication at the allotted times
  • lying about checking in on me recently at shift changeover.

I get that nurses are busy and they have a tough job, and that there are patients who don’t make their life any easier, but to have to strip my own bed three days after surgery because they’re busy having a cup of tea and writing up charts and then bitching about having to do their job is not on.

The tubes and tribulations of surgery

Prior to surgery, I knew that I would have to have a drain and a catheter, and while I wasn’t looking forward to either, particularly the latter, I accepted it. What I wasn’t expecting was a NasoGastric (NG) tube which runs through my nostril and down the back of my throat and makes life generally miserable.

Following my overdose, they took an x-ray of my chest to check for pneumonia etc. What they discovered during that x-ray, but never told me, was that the NG tube had repositioned itself, no doubt during my violent shivering/shaking during the Narcan taking effect, and that it needed to be repositioned. The result was that I spent two days feeling like I was choking on something until Tracey, a lovely nurse with a still strong English accent, convinced the on-ward doctor to remove the NG tube. She prepared me by telling me to take a deep breath in, and that she would pull it out as I exhaled. Fuck.Me! The tube was only a mm or two thick but when she pulled it out it felt like she was pulling a fucking Anaconda up my throat. However, once it was out, I felt like a new man. I was able to drink water and eat ice properly (at that stage was still on IV fluids only) and generally felt like a normal person again, notwithstanding that I still had tubes coming out of my abdomen and schlong.

The catheter was the next thing to come out, and if I thought the removal of a NG tube was bad, I was soon to be rudely awakened. Same deal, deep breath in and we’ll pull it out on the breath out. Having it removed felt like a 1000 ants scurrying through my urethra while dragging bread crumbs at the same time. Hopefully I won’t have to have one when I have my ileostomy reversal surgery.

The last tube to be removed was my drain, and this was singlehandedly the worst, most painful part of my entire hospital stay. The drain I had is called a Jackson Pratt drain, which is remarkable in it’s effectiveness and simplicity. It basically works on negative pressure caused by a bellows, which in turns creates suction, thereby removing excess fluid through the drain and into a receptacle. The drain itself can be either flat(ish) or round, and is connected to a tube…duhhh. The unfortunate thing is that the drain is thicker than the tube, and is generally placed from the inside out during surgery, that is, the thinner, tube part is pushed out of the body through the incision while the thicker, draining end remains inside the wound site. The result is that there is a flange or shoulder where the tube and the drain part meet, see below:

Drain

Unfortunately, being the super healer that I am, my body and already started to heal around the drain incision site, meaning that it had closed around it. When they tried to remove it, they got to the shoulder, and then I watched on in agony as my skin was distended from the inside out. My screams of ‘FUCK’ and tears streaming down my face were sufficient for the nurses to call stumps on that endeavour.

The rest of that day was waiting for the surgical team who inserted it, to finish so we could certain whether they had stitched it in by mistake. One of my surgeon’s underling offered to ‘have a go’ if I liked. I politely advised him that I declined any further intervention unless it was removed with suitable pain medication, a local anaesthetic, or sedation, and that any attempt to so without those prerequisites would amount to an assault. He looked up my chart, saw my occupation as a prosecutor, and said he would try and ‘see what he could do’. True to hospital form, that later visit never came, and that evening I finally managed to have a shower and the aforementioned bed making incident occurred.

In the very early hours of the morning, the night shift nurses again offered to try and remove it, while at the same time, bitching about the nurses that morning who had tried, unsuccessfully, to remove it. I again reiterated that the drain would be removed under sedation, or via further surgery. She laughed, saying that they would never sedate a person simply to remove a drain. I explained that I can be very persuasive and she laughed, patted my shoulder, gave me my undone and wished me pleasant dreams. Oh how I wished we’d made a bet.

The following morning, my surgeon came into have a ‘look’ at this errant drain. Without any warning, and certainly without any pain medication, he gave it a good old yank which again led to me screaming and crying, followed by profuse apologies by the surgeon, although I note he wasn’t sorry enough to offer me his IWC pilot watch to me to make amends. And just like that, it was announced that the drain would be removed under sedation.

Again, I waited for most of the day, which was boring as fuck, particularly because I was fasting, and only made more palatable by a visit from the surgeon with my pathology results, but more on that later.

When they wheeled me into theatre, I was again met by an awesome anaesthetist, despite his botched attempt to canularise me. Again, I saw the milky goodness that is propofol and we laughed about why cardiologists shouldn’t be allowed to get access to it (Michael Jackson jokes). Apparently I was unconscious for all of 20 seconds to remove the drain and lo and behold, I was tube free.

Complete Pathological Response

If you take nothing else from this post, this is the important part.

While waiting for the drain to be removed, my surgeon came in and announced he had ‘good news about my cancer’, informing me that he had received the pathology and that he had gotten clean margins. I asked about the tumour regression grade (TRG) which is a scale used to measure how effective neoadjuvant (or pre-surgical) treatment (i.e. the chemo and chemoradiation I had for three months) had been. His response was “I don’t know, I didn’t read that part of it, I just wanted to make sure I got it all out”. With that, he was gone. I was suitably elated, although interested to know what the TRG was as it is massively relevant to prognosis. A minute later my surgeon came back in a thrust a copy of the pathology report in my face and then again disappeared like a fart in the wind.

I scanned through the pages until I found what I was looking for, a summary of which is set out below:

  • No tumour cells are seen and the whole of this area has been examined
  • Tumour Regression Grade: 0 (Complete response) no viable tumour cells
  • Regional lymph nodes: 0 nodes involved, total number of nodes is 12

I’m not ashamed to say that on reading the above I started sobbing big, fat tears. I’m crying even writing the above, and every morning when I’m in pain from my blood thinning injections, or when my stoma site or wound hurts, I read it again and tell myself it’s all worth it.

In its simplest sense, it means that I no longer have cancer. That the treatment thus far has been completely utterly effective in eradicating the tumour from my ass. True, there could still be microscopic cancer cells floating around my body and that’s why I’ll still have to have a few months of adjuvant chemotherapy but in medical terms, you can’t get any better response to treatment than this. And to give you an idea of what a big deal it is, all of the studies I’ve read reveal that only between 6-20% of people get such results.

But the long term results are much more than that. The fact that all the lump nodes were ‘clean’ is great news in terms of prognostics, as the lymphatic system is one of the most common way that cancer cells spread throughout the body. The other is the venous system which was also clear in the specimen removed. Essentially, it means that it is far less likely that the cancer will recur later in life. I’m not out of the woods yet, and I have to wait until I see my oncologists to get some more information but suffice to say, I’m fucking stoked. A couple of recent studies I’ve found that in patients with a complete pathological response, they have a greater than 95% chance of not having a distant recurrence in the 5yrs following surgery. Most oncologists will tell you that recurrences are most likely to occur within the first 2yrs and that every day you go without a recurrence, the chance of it happening decreases. my results mean that the odds have swung firmly back into my favour.

Shit in a bag

A couple of days after surgery, my stoma started making funny noises and output, notwithstanding that I was still on IV fluids as opposed to proper food.

What quickly followed was a visit from my stoma nurse, who showed me how to change the stoma bag, and generally care for my new attachment. Then, before I knew it, it was my turn to change the bag, under supervision, and I received full marks.

I have to say that seeing part of my small intestine sticking out from my stomach is still something i’m getting used to, and sometime, I just sit there and watch it work after a meal. The human body really is incredible, and I have a new found respect for medical pioneers who worked out surgical techniques that allow people to (a) survive, and (b) do so with a good quality of life.

While confronting, and annoying sometimes, all things considered, having a stoma is really no big deal. I’m still a little self-conscious about it but have been told that people can’t really notice it if they didn’t know it was there.

So what’s next??

For now, just recovering. Each day I get stronger and more mobile. The pain is getting much better each day. To give you an idea, I’ve gone from 12 Endone a day to 3, and when I run out of this script, I can’t see myself renewing it.

I have 2.5weeks left before I have to go back to work, but to be honest, I can see myself being back a week early.

I meet with my oncologists next week to share the good news and have them tell me how awesome I am, but more importantly, to find out what the chemo regimen they have for me is and when it starts. I can’t have the stoma reversed until the chemo finishes so I want it to be over sooner rather than later.

The bummer is that I have to have more chemo at all. If I was 30 years older and had the same results I have thus far, they wouldn’t offer it to me, but because I’m young and strong enough, I anticipate that they’ll continue to punish me for as long as I can handle it, up to another 9 rounds.

That sounds like a lot, but it’s every fortnight, so it will be over fairly quickly. Plus, I’ve been very lucky side effects thus far and there is no reason why that shouldn’t continue. The bottom line is that this is these guys bread and butter and obviously, I’ll do anything to increase my chances of being around for as long as possible.

It would be completely remiss for me to not mention how incredible Lyndell has been through all of this, particularly while I was in hospital, and now that I’m home. I was shit-scared about the surgery and I was asleep through it all. I can only imagine what she went through waiting to hear the news that all went well.

She has had to essentially look after two children, one who is taking the term ‘terrible twos’ to the nth degree, and one who, for some time, was a stoned cripple.

She hasn’t complained once, even though she is exhausted, her back hurts, and she’s still been working at the same time.

I can’t think of how I will ever repay her, other than to buy her multiple handbags and take her to our favourite place in the world (Hawaii duhhh) where we, and most importantly she, can recharge the batteries and just do nothing.

I love you sweetie, and can’t believe how lucky I am to have you in my life. I couldn’t have done this without you.

Anyways, that was was longer than it was meant to be, and I fear I still missed things out.

As always, until next time, be kind to your colons, and each other.

GK

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