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

Advertisements

A Ship in Troubled Waters

Self indulgent/whiny/woe is me/negative post ahead…

Over the last few days the enormity of what faces me next week has sunk in, and I say that with the full respect to those who have gone before me, and two that I personally know, who have said not a peep about their ‘journey’, and yet have been kind enough to lend me a sympathetic ear.

This time next week I will have met with, and been marked by, stoma nurses, supposedly guiding my surgeon as to where the most appropriate place to site my ileostomy is.

This time in 8 days I will have commenced my bowel preparation, which is about as much fun as a fire hose through my insides, and wiping my ass with sandpaper.

This time in 8 days I will also know my surgery time, which, for reasons unknown to me, seems to be a state secret until the day before I am supposed to have a prolonged, not-by-choice sleep.

This time in 9 days I imagine (read as hope) that my surgery will be complete and I will be convalescing in a hospital bed, waking to my loved ones confirming that (a) I am still alive, and (b) that all went well.

So why the whining? Because I’m over it. I didn’t realise how over it I was until I went in to have my port flushed yesterday and sitting in that shit awful chemo room reminded me of how much has passed, and more importantly, how much more is still to come.

I’m over feeling tired. All. The. Time. I’m over the fact that in that respect, the worst is still to come.

I’m over people being overtly positive about how well I’m doing/done/looking and thinking that I will therefore ‘beat’ this. I know you mean well but it gets wearing. The simple fact is that while the odds at present are in my favour, they’re still not great. It’s more likely than not that I will die from cancer. To be completely blunt, it’s more likely that I will die from cancer before I turn 40.

Even that assumes I survive surgery, and I can tell you that the fear of not doing so, has, in recent days, consumed a vast majority of my waking moments. The rational part of my brain tells me that my fears are unwarranted, and yet the irrational part of my brain imagines Lyndell cradling Annabelle and my dad having to explain to my mother, who herself has an imminent terminal fate that something went wrong. And then nothing.

I’m over the fact that this potential death sentence is my/our future for as many years as I walk the earth.

I’m over putting on a brave face. The simple fact is, I’m scared shitless. In the last week every time I’ve looked at my daughter I’ve been on the verge of tears. I had to ring my dad and ask him to be my executor in the event that my surgeon/anaesthetist are not as good as they claim…Imagine how that conversation went down??

I’m even over shitty stuff like losing my hair. I always said that I didn’t mind if I lost my hair and if that’s what it takes to survive, then I’ll happily be bald as a cueball, but it sucks washing your hair in the shower and watching clumps of hair fall out. Perhaps I could see some to Donald Trump.

Most of all I’m over thinking about what I’ll miss if/when I’m gone. I feel sick when I think of Annabelle calling someone else ‘dad’. I can’t fathom that person helping Annabelle through the most important years of her life, and yet at the same time, if I do succumb to this shit of a disease, then I desperately want Lyndell to remarry so that Annabelle has a father and Lyndell finds love again…

I’m over having to think/write about this shit at all!

Anyways, I’m sorry. For  some reason everything caught up with me today and I had to vent.

Until next time, be kind to your colon’s, and each other.

 

 

Fear and Loathing in Newcastle

I’m writing this entry smoking a cigar which was was born in Cuba, grown and harvested in Hawaii, rolled in Nicaragua, and then brought back to the hallowed Aloha Isles for sale due to the fact that tax laws in Hawaii make it cheaper to do so, as opposed to the whole process being completed in Hawaii.

“Smoking a cigar” I hear you say. “You should avoid everything that can cause/exacerbate cancer” I can see you thinking…

FUCK THAT SHIT! At the very least let me enjoy this…

I’m not a fucking moron though, I recognise the increased risk that enjoying a cigar creates, particularly in light of the fact that at present, my cancer hasn’t spread. Fortunately (I’ll get to it in a second), it hasn’t spread to my liver (or other organs, more importantly) and so I’m able to write this post in some sort of weird, hopefully prognostic  way… I know on the face of it that it sounds ridiculous to smoke a cigar given I have cancer. Indeed, when I completed the admission forms for my pending surgery, I said that I was a “smoker” and added that I smoked a cigar once or twice a year. Tonight is my first cigar for 2016, and my second is planned for the party I have for when Miguel is removed from both my anoos, and my memory.

Fear

The last sentence above is a lie. Miguel will never escape my memory. Regardless of how effective my treatment has been thus far, Miguel will always be the shitty cousin. He will forever be a reminder that despite my awesomeness, I’m not immortal. I may be lucky. Maybe Miguel will be sent back to Mexico and he’ll never raise his ugly face again. Personally I don’t think I’m that lucky.

In a lot of ways, the present is far more scarier than what has passed thus far. To refer back to my previous post, the chemo and radiation in particular, continues to work for some time after treatment finishes. Indeed, the optimum time for surgery is up to 60 days following the cessation of radiation. My surgery is 59 days after I last let Zeus violate me. It’s good to know that my surgeon is up to date with the most recent medical opinions in terms of optimum time for surgery.

Not having to attend for treatment is great, but it brings with it a whole new fuckload of fear. At the moment, but for my specialists assuring me that the radiation is continuing to (hopefully) shrink the fuck out of Miguel, I am left with the (sometimes) overwhelming fear that the cancer, without any active treatment, is spreading through my body like gonorrhoea through a brothel.

And that sucks.

I live in fear that during my operation to remove Miguel they find metastases to my liver (or worse, other organs) that weren’t seen previously. I spend hours each evening reading medical journals about the efficacy of the monstrously tweaked treatment plan my specialists have prescribed.

I live in fear that I may be the 1% of people who don’t survive surgery, which my rational brain tells me is irrelevant because most people with my type of cancer are old, and even a simple fall/broken hip can spell the end for them, and that, statistically speaking my surgery should be a walk in the park.

I live in fear knowing that, at the very least, the next 5 years of my life are filled with blood tests. various scans, and other tests to detect whether Miguel has appeared in other parts of my body.

I live in fear that such news brings with it a realisation that, despite my best intentions, regardless of how hard I ‘fight’, I won’t have the measure of Miguel.

I don’t necessarily fear death, rather I fear what it means I miss out on. I fear being not being able to see Annabelle go to school. I fear not being able to see her become the incredible person which she will no doubt become. I fear becoming just a distant memory for her, someone who exists only as a photograph. I fear not being able to fulfil the expectations that Annabelle has of her father by virtue of me not being there. I fear not being able to enjoy the adventures that Lyndell and I would have had, but for Miguel. I fear not being able to grow old with Lyndell, who, for no reason other than bad luck, has to experience the above, and will have to deal with the aftermath of my demise.

Loathing

Since my diagnosis I have tried to be positive, and to be philosophical about what lies ahead. That said, I’m not immune to asking myself the age old question “why me?” “Why not the fuckers I prosecute who have done nothing good in their life and who add nothing to society?”. I’m not a saint by any stretch of the imagination but I’m not a complete cunt, emphasis on the word complete.

Of course I loathe the fact that I (and by ‘I’, I mean Lyndell, our respective families, and friends) have to go through this.

I loathe that Miguel makes me a substandard father, husband, friend, and colleague.

I loathe that my ability to withstand the rigours of treatment thus far is not indicative of my chances of survival.

I loathe the fact that every time someone dies of cancer it’s reported that they ‘lost’ their ‘battle”. It implies that they didn’t try hard enough to survive. That’s just flat out, fucking bullshit! I don’t know many people in my situation, because I stroll into treatment, talk to my nurses and the loved one who is kind enough to give up a day of their time, and have my hot lunch. But, having sat for hours in a chemo ward I can tell you that people there don’t do it for shits and giggles. Sure, some of us are lucky to have options as to treatment, but in the end it comes down to the fact that the alternative is simply unpalatable.

Most of all, I loathe the fact that cancer exists. I loathe the fact that it has ‘touched’ my family, both immediate and otherwise. I loathe that cancer took my grandfather who managed to survive being a P.O.W during WWII, only to succumb to metastatic melanoma, decades after that misery; I loathe that my father and sister had to undergo surgery to cure this shit of a disease; I hate that Lyndell’s aunt and grandfather have had to endure this shitty merry-go-round that constantly keeps you second-guessing.

Conclusion

I don’t really know how to end this post, other than to say thanks for reading my rant, and thats exactly what it’s been.

Until next time, be kind to your colons…and each other

Like a knife through hot butter

So I saw my surgeon this morning who advised me that 18th March is the big day for surgery. “That’s all very well and good”, I hear you say, “but what are they actually going to do to you?”. Well, read on and find out. I apologise in advance as there will be some measure of detail, some diagrams, and maybe even a picture of a rectum or two just for shits and giggles.

The official name of my operation is a Total Mesorectal Excision (TME) performed by Low Anterior Resection (LAR). Sounds fancy eh. For some time now it has been the gold standard of curative surgical intervention for advanced (read lymph nodes involved, not metastatic) rectal cancer, and when combined with neoadjuvant chemoradiation, reduces the incidence of local recurrence (i.e. the cancer coming back in my ass) to <5%. That’s a good thing, because my pelvis is already irradiated to buggery and as much fun as I had with Zeus, I’d like to never see him again.

Unfortunately, because my tumour is ‘bulky’, and notwithstanding that it has shrunk and will likely continue to shrink, my surgery will be a combination of ‘open’ and ‘laparoscopic’. The diagram below shows the difference in terms of the incisions and ultimate scars. At best it’ll look like a snake going down to my man bits, and at worst it’ll look like I have an ass crack on my stomach. Anyways, better to have two asses than be dead. On a positive, I’ll be sure to shave the pubes:

Wounds

A quick anatomy lesson

The image below shows the large intestine, or colon. You can see that it is made up of various parts, with the rectum being the poo warehouse before dispatch, and the anus being the turd-cutter.

The colon’s principle job is to remove water from waste, and to move the turd along until it’s time to drop the kids off at the pool. The large intestine is pretty big, measuring about 5ft long, but is dwarfed by the small intestine, which measures on average, 20ft long.

The dark shaded part is what is removed in a LAR, although, as is the case in every instance, the actual bits removed will vary:

LAR.png

My tumour is more towards the top of my rectum and so they may not remove as much of my poo warehouse. The trade-off is that the surgeon will probably take a little bit more of my sigmoid/descending colon just to be on the safe side.

Because it looks like some lymph nodes have been compromised, they will also take out a large portion of surrounding tissue (read: fat) called the mesorectum. The image below shows the approximate plane of tissue that will be removed:

TME

The final part of the operation is to take a medieval looking torture implement and staple the healthy part of my colon, to the healthy part of my rectum, a procedure called ‘anastomosis’. The device itself looks like some sort of demonic dildo that has double rows of staples within it which creates a double seal, reducing the risk of a leak. They then flood my abdomen with water and pump CO2 up my ass like a reverse fart, to test for leaks, just as you would when repairing a bike inner tube.

Below is the ass stapler:

Ass-Stapler

Hopefully, my surgeon can read Japanese(?) and he knows that the bit on the left goes up the date and not the handle. The cap on the far left is stitched into the healthy part of my colon and the rod part from it marries up with a bracket in the long bendy part. Once they are paired up, the handle is pulled and a double row of staples are fired, creating a perfect (hopefully) seal.

Unfortunately, the fact that I will have an open wound in my sewer canal means that I will have to have a stoma while the anastomosis heals. Fortunately, it will only be temporary, and will be reversed after I finish my post-surgery chemotherapy. After that I’ll be able to poo again, albeit a little bit differently.

What is a stoma

A stoma is basically an opening of an internal organ to the outside world. The most common, and relevant ones in terms of this type of surgery, are colostomy’s and ileostomy’s. A colostomy comes from the colon itself and is more often than not permanent. The waste it removes is more like the turds you are used to seeing when you check to see whether you did a phantom or a floater.

I will be having what is called a ‘loop ileostomy’ which is where they remove the final part of my small intestine, the ‘ileum’ out through my stomach and sew it to my stomach creating an opening through which liquid waste can be expelled into my ‘bag’. I will have to have it for at least 3 months but in light of the fact that my chemo will go for at least 4 months, and my surgeon isn’t keen on digging around in my insides while there is poison in there…I know, what a pussy right, I will have my bag for c 6 months.

Below are two images. The first is roughly what a stoma looks like and the second shows what I will look like with my bag:

Stoma1

Stoma3

I am trying to think of a name for my stoma/ileostomy bag. At this stage I am leaning towards naming it after a defence solicitor who, given he is full of shit, lends his name quite well. I will refrain from naming him here but those who know and work with me will have a pretty good idea who I’m talking about.

Will I ever be able to poo normally again?

The short answer is ‘sort of’, the long answer is ‘probably not really’. As explained, the large intestine’s main job is remove water from the stool, making it more solid. It then travels through to the rectum where it is stacked and stored until it is time to ship out.

The result of losing a portion of both my colon and rectum is that there will be less water removed and less storage space. That combination means that I will need to have a pretty good idea where the nearest bathroom is, and at least at first, there may/will be times when I may not make it. In the meantime, I will be investing investing in double strength undies and mission brown slacks.

How am I feeling about it all?

With all puns intended, I’m shitting myself. The surgery will take 3-4hours and I’ll be in hospital for over a week. I’ll have 4-6 weeks recovery time before returning to work, but it is more than likely that I’ll be back having chemo within a couple of weeks of going under the knife.

Visitors will be most welcome, but in small doses, and preferably only if you have boring stories because apparently it hurts to laugh.

It’s also while I’m in hospital and for at least a couple of weeks afterwards that Lyndell and I will need the most help, and in that regard I’m (read: we’re) so grateful for everything that you wonderful people have done for us so far. It is a huge thing for me to ask for help but in light of the fact that I’ll be a cripple with two asses but who can’t fart, I need to suck up my pride and ask for a little assistance.

So now we’re all up to date. I’ve finished my treatment and will now be focusing on giving the body a rest from the rigours of treatment, and getting strong and fit so that surgery is smooth and my recovery is smoother.

Until next time folks, be kind to your colon’s, and each other…

 

 

A day in the life of – Chemoradiation (CRTx)

As I near the end of my chemoradiation, I thought that I would do a day in the life of, with a bit of info about the radiation aspect of it in particular, because it’s interesting as hell.

Most of my recent treatments have been in the morning, which is good on the one hand because you get it out of the way early and then have the day to yourself but on the other, it’s fucking brutal having to fill your bladder so early in the morning and hold it. It also means that I piss like a racehorse for the rest of the day. Adding insult to injury is that despite the best intentions of Zeus in attempting to spare my bladder, it still cops some of the radiation, which means that each piss is accompanied by a not-so gentle reminder I’m unwell, in the form of a hot poker to the bladder.

Chemo

As per a previous post, the chemo aspect of this side of treatment is pretty easy. I take three of these puppies in the morning and again at night, within half an hour of eating. Sounds simple right? It is, except for “chemo brain”, which is an actual thing I’ve found, which sometimes makes me cut it pretty fine in terms of sneaking into that 30 minute window.

Below is a pic of the tablets:

Xeloda

As discussed, this is a pretty fucking smart drug. It is almost completely inert until such time as my liver converts it to Fluorouracil or 5-FU, which then travels directly to the tumour itself, where it basically tricks the tumour into giving it a hug and then it kicks it in the balls and steals it’s lunch money. OK, so it doesn’t commit robbery, but it does interfere with the DNA/RNA of the cancer cells which prevent it from reproducing. If it can’t reproduce, then the tumour can’t grow. It also works by starving the cancer cells of nutrients they need to just continue being cancer cells. That also leads to cell death and as the DNA is fucked, they can’t replicate and so the tumour shrinks.

Where it really comes into it’s own though is the combined effect it has with radiation. Tumour cells don’t like being irradiated at the best of times, and they like it even less when they’re struggling for life. Kind of like almost drowning, and just when you get to the edge of the pool, some bastard kicks you in the face and holds your head under water until your name is changed to ‘Bob’.

Fortunately, of all the side effects that Xeloda can cause, the only unwelcome visitor I have had to endure is fatigue. The fact that I am coming to the end of the treatment and have escaped the more sinister symptoms is a huge relief, kind of like doing a a really big poo for the first time in months, which also happened recently, but thats another story.

Full to the Brim

An hour or so before treatment, I start to drink as if I’m in a bar and they’ve just called last drinks, or pretty much a Tuesday afternoon.

It takes between 30 and 45 minutes for water to reach the bladder according to various websites. I thought during the first round of CRTx that I had shortened it to around 15 minutes but eventually realised that wasn’t the case, and that it was rather a ‘trickle down’ effect.

Prior to starting treatment, I had a ‘planning CT’ scan. Unfortunately for me, I took their advice to have a ‘full bladder’ to the extreme and turned up resembling the Hoover Dam. I now have a new found respect for my wife, having to endure multiple ultrasounds when pregnant with our spawn. Unlike my wife however, I have become the master of the ‘strategic wee’ and am able to let out little bits at a time so that my bladder is still full enough for treatment, but not so full that the therapists have to wear wellingtons while cleaning up the flood that was my bladder.

Radiation

Anyways, they take that CT image, and fuse it with the staging MRI I had following the diagnosis to make a incredibly detailed, 3D image of my pelvis. Going throughout that image are a number of different coloured lines showing the directions of beams that Zeus will administer from, and different coloured ‘clouds’ which show the principle radiation zone, as well as the areas that they administer lower doses to, such as areas where my lymph nodes are, to make sure that nothing is left behind. The end result is that my pelvis will resemble Hiroshima at the end of treatment…barely inhabitable and forever stained with the blood of Miguel (I don’t know whether any of the victims of Hiroshima were named Miguel – I suspect not).

Treatment itself is a walk in the park, most days.

I try to avoid eye contact with the other patients in the waiting room except for Terry. He’s a good bloke who has rectal cancer as well. I gave him my paper once after I had finished with it and now I am his best friend. I think he has a ‘radiation shirt’ in much the same vein as I have my ‘chemo’ shirt because he’s always wearing the same thing.

Anyways, it’s somewhat surreal sitting in the waiting room of a radiation oncology clinic. But for two other people, each of whom I saw once and never again, I am by far the youngest person in the room, and by a long stretch as well. People are shocked when I tell them the type of cancer I have because, as you might have noticed, I’m not a 65 year old man.

Then, often as they are about to enter the final round of a game show I’ve been annoying the other patients by answering the questions aloud, before the question is even finished, my name is called and it’s show time.

I lie on a gantry, on my back, place my legs in a custom mould and pull my pants down so that the elastic of my underwear is just covering the top of my shaft. The therapists are kind enough to hold a towel over me so I can retain what little dignity I have left as they shunt me and twist me into the optimum position, and so that the three tattoos they gave me during the planning stage (one on each hip and one on the front of my pelvis, right above my shaft) are lined up with the lasers that bounce around the room.

The lights are off at this stage and it’s kind of like being at a rave, except that I’m not drunk and I need to wee. Once, one of the therapists touched my penis. I’m sure it was ‘deliberately accidental’ but since she is helping a brother out and helping to make me better, I didn’t make a big deal out of it. The lights come on and the therapists flee the bunker like rats from a sinking ship.

On a good day, they only take a couple of quick x-ray images of my insides before the radiation treatment begins. On a bad day, they do a full 360* ‘cone-beam CT scan’ which itself only takes less than a minute, but ends up adding between 3 and 5 minutes to the total time because the therapists then need to check everything.

It’s then a waiting game, and this is by far the worst part. You lie there, perfectly still, looking at the illuminated ‘Caution – Radiation imminent’ sign near the door and hope that it remains illuminated. If my bladder isn’t full enough or I haven’t dropped the kids off at the pool and my ass resembles a Tarago then the light goes off, the door opens and I know that I’m in for a long day.

On good days, and fortunately I’ve only had a handful of bad ones, you feel the gantry being moved remotely and it locks into place. Then the fun stuff starts.

Most of you reading the blog will have seen the video I posted of my mate Zeus and I spending some quality time together. In total, he does a full rotation, stopping 7 times to hit me with his rhythm stick. When the radiation is being administered, it sounds like a swarm of robotic bees. Interspersed with that mechanical drone is a grinding noise as the less in the collimator move, shaping the radiation beam so that it hits the tumour, and doesn’t completely napalm the rest of my pelvis.

Zeus is a linear accelerator, or LINAC for short. He is, quite simply, a fucking marvellous bit of gear. He’s huge, think the size of a truck, but also nimble as Jarryd Hayne as he revolves around me. Basically, he makes x-ray beams, in the form of photons, and high-velocity ones at that. The photons are accelerated from the body of the machine, into the arm which holds the head, before being directed through a series of buffers and into my ass.

Inside Zeus’ head is what called a ‘multi leaf collimator’, sounds fucking impressive, right? Below is a picture of what I’m talking about, because it makes it easier for you to grasp if you can see what I’m talking about:

Collimator.jpg

The ‘leaves’ are those metal stick looking things and they move. As you can see from the image above, that machine is probably irradiating an apple. In all seriousness, those leaves move while the radiation is being administered, to shape the beam to make sure it goes where it’s supposed to, and doesn’t go where it’s not.

Each pass Zeus makes lasts between 25 and 33 seconds. After he does that for the seventh time, the warning light goes off, the door opens, I pull my pants up, jump off the gantry, exchange pleasantries and sprint to the toilet, or, if I have done a strategic wee before hand and don’t feel like I’m about to do the reverse Moses, I ask mundane questions which allow me to provide the information contained herein.

Anyways guys, this was a longer post, and if you’ve made it to the end, you should be applauded.

Until next time, be kind to your colon, and each other…

The China Syndrome…

is a fictional 1979 movie starring Jane Fonda, Michael Douglas, and Jack Lemmon. It’s premise is a news reporter and her cameraman (Fonda and Douglas) film a simulated emergency shutdown of a nuclear reactor. In typical Hollywood fashion, something goes awry.

For those not in the know, nuclear power is generated by radioactive elements, generally uraniam, which is ‘reacted’ to create heat, which in turn creates steam, which turns a turbine and you guessed it, creates electricity.

The premise of the China Syndrome, and hence it’s name, is that if a nuclear reactor were to explode etc, then it would melt through the earth to China, similar to the colloquial, ever efficient digger.

The reason I raise it is that my pelvis presently resembles a malfunctioning nuclear reactor. You know those wheat packs that you put in the microwave and then put on a sore muscle etc??? It’s like I have one of those permanently implanted in my pelvis. It doesn’t so much hurt, more, a constant reminder that I’m having some serious treatment.

Another side effect stems from the fact that my bladder is hit by the radiation, notwithstanding the best effort of my RT’s in shaping the radiation beams around the important bits. I’ve never had the clap, but I imagine that this is what it feels like. Not quite pissing razor blades, more like liquid lava with bits of jagged, semi cooled chunks in it.

Another less-PG side effect is diarrhoea. It. Fucking. Sucks. In one session today I did three courtesy flushes and still the sludge flowed like i was delivering concrete. Even worse is that it itself burns. Your stomach churns like an old witch tending to her cauldron and then next minute, my asshole resembles Mt Vesuvius.

The main side effect is fatigue. As discussed in an earlier post, prior to experiencing it I didn’t think it existed. It’s fast and silent in it’s approach, much like a gagged ninja. I spent Monday of this week on the couch, which in itself wasn’t a bad thing, I watched some US college football and generally convalesced like a lad of leisure. When it hits though it’s profound. I’m talking about not being able to physically get up off the lounge, bed, floor. I’m talking about falling asleep all over the shop like a narcoleptic taking stillnox and a valium just for shits and giggles.

And so completes my first block of chemoradiation. Other than the radiation side effects and some very mild effects from the chemo tablets I take, I’ve again escaped pretty much unscathed. Touch wood that continues.

Until next time, channelling Jerry Springer, “be kind to your colons, and each other”.

By the Beard of Zeus

I don’t believe in God. I never have. Religion is a wonderful thing when it provides hope to people who need it, but it can also be a veil behind which hypocrisy, hate and evil can hide, misinterpreted, either accidentally or deliberately, for peoples own selfish gains.

At school, and indeed at home, because my mother was an Ancient History teacher, I learnt about a different type of God(s). Namely, the Gods of the ancient world. Now, in light of the previous paragraph, I’m not so foolish to think that people many moons ago didn’t do some fucked up shit in the name of Thor and Anubis. I mean, sacrificing virgins to curry favour with some imaginary, all powerful homies is the epitome of insanity.

Anyways, today I started my chemoradiation block.

Chemo

In terms of the chemo, it’s pretty easy. I take 3 tablets of Capecitabine (Xeloda) morning and night. Capecitabine is a pretty fucking smart drug. When it is first consumed, it’s pretty much inert. It is then processed by my liver and travels directly to the tumour itself, where it is then converted to Flourouracil (or 5FU), which you may remember is the shit they pump me full of when I bring Optimus home in my crocheted bag. Here is the kicker, the tumour itself actually converts the drug to 5FU. It basically converts it into a drug that will end up killing it. It’s like suicide for tumours.

The mechanism of Capecitabine/5FU on the tumour is two-fold. Firstly, it prevents the cancer cells from reproducing (which is what they do best) by starving them of the nutrients they need to do so, and also destroys their DNA and ability to replicate themselves, causing cell death. The cells that don’t die, are substantially weakened, and that’s where Zeus come into the equation.

Radiation Therapy

Radiation Therapy, or RT in the buziness, is exactly what the name entails. A huge, kicks machine creates radiation, which is then directed through specifically created beams, to the the area for treatment.

The machine that does all this magic is called a linear accelerator, and it’s huge. Think about the size of a prime mover and you’re in the ball park, although it looks more like something out of a Transformers movie.

It’s a difficult thing to describe. It has a huge body and then protruding from it is the central arm which has a large disc on the top of it. That’s the part that houses the ray gun. on either side are two arms which operate an x-ray which can take scans during the treatment in real time, to make sure that the beam is going where it’s supposed to.

Anyways, the name of my linear accelerator is ‘Zeus’. I couldn’t think of a better, more apt name to give such a beast of a machine, and although my mum won’t be able to express her excitement due to her medical condition, I know that on the inside she’ll be just as chuffed as I am 🙂

Actually having RT is a piece of piss, almost literally (I can say that after having a whole single treatment LOL). Because I am having radiation administered to my pelvis, I have to have a full bladder. Today, eager to impress on my first day, decided to go all out, to the extent that when the time came to jump on the thin plank-like gurney, it almost came all out.

Fortunately, my RT’s were an awesome bunch of young fellows who were kind enough to let me keep my undies on (although pulled down to above the schlong – but covered with a sheet for my modesty and their safety) and didn’t try and touch my dick. Maybe tomorrow it will be a female therapist and I’ll get lucky, you never know.

Anyways, they put you on a gurney and whack my legs into a custom made cast so that I’m always in the same position, push and pull me to make sure the laser beams line up with the tattoos they gave me previously (see below) and then tell me they’ll see me in a little while. They then run to a bunker, and I’m not making that up. It’s literally called the bunker.

At the planning stage of the process, they placed 3 pinhead sized tattoos on me that they use as reference points for each treatment. Now you won’t see any of the techs on ‘Tattoo Nightmares’, but you’re sure as shit not going to see them on ‘Ink Master’ either. They’re fucking tiny, and a total disappointment. The only cool thing about them is that I hope to have them converted into a ‘connect the dots’ style tattoo when this whole sorry saga is behind me. Maybe i’ll get some sweet constellation, or perhaps the face of Zeus, that would totally be fitting.

Back to the radiation itself. It’s completely painless other than the feeling of my bladder stretching to the point that it resembles the Hoover Dam (that’s a big ass fucking dam in the USA if you didn’t know – it’s even been in movies and shit). The x-ray arms extend first and take some scans. It kind of looks like Zeus is reaching out to try and hug you, only to take photo’s of you with your pants down like a dirty perv. They then retract like I’ve got cancer and it’s contagious and Zeus himself gets to work. The head starts on my lefty side, below my hip and the buzzing noise of a thousand robotic bees tell me that I’m being irradiated. That continues for about 30 seconds or so and then the head moves around a short distance, before stopping and delivering another dose of gamma goodness. It continues to revolve around me until it reaches the equivalent of it’s starting position on the other side, and then we’re done. The warning light goes off, I see people come in and I’m allowed to pull my pants up like a sullied maiden.

Seems pretty easy, right. It is. I just have to repeat it another 24 times and I’m done.

In terms of side effects, it can cause nausea, diarrhoea, fatigue, hairloss and skin sensitivity to the irradiated part of the body (saves me waxing the crack), painful pissing like I’ve got the clap, and the general feeling that my insides have been microwaved, which they have. Apparently, they’re cumulative, which, for all my simpleton friends, means they get worse the longer the treatment goes on. That’s why I only have it weekdays (again, cancer doesn’t work on weekends guys) and have a break between the two treatment block. I should add that the ‘break’ consists of a week of chemo immediately afterwards, and then a proper recovery week before we start the fun all over again.

I’ll close by reporting on a really positive meeting with Sofia Vergara (my South American oncologist Giovanna something) after my RT. She confirmed that my blood test results were good and she was happy to hear that I hadn’t really suffered any side effects, other than fatigue, from the first cycle of chemo. She confirmed that the first cycle was generally the worst, and that the fact I had escaped relatively unscathed put me in good stead to survive the remaining cycles in a similar vein. I also reported that the physical symptoms of the cancer itself had disappeared and she reported that that was also a really good sign, as it means that my tumour is one of the ‘good’ ones, which is receptive to treatment.

Armed with that good news and with only a few happy tears having conquered Day 1 of RT, I had 2 toasted ham, cheese and tomato sammy’s for lunch, fired rice for dinner, and a large ice-cream from ‘Cold Rock’ for dessert.

Until next time, be kind to your colons 🙂