Deportation

On 7 January this year I smelt a strange, but familiar smell while showering. It wasn’t last night’s curry, or rank BO, but the pre-surgery antiseptic wash they give you before any ‘major’ medical procedure.

I say major but really, it was a walk in the park, or at least it was supposed to be.

The following day I sauntered into the radiology ward, ready to cut the final physical cord tying me to cancer. I would literally be having my lifeline removed and although I was anxious about it: “What if it comes back, only to have to have another one put back in” type stuff, mostly, I was excited.

I was disconnected from my last chemo infusion on 24 August 2016, and yet every 4-6 weeks I had my port accessed and flushed. It wasn’t necessarily painful, more uncomfortable, but the real annoyance was that it was a constant reminder to being unwell. Oncologists won’t generally let you have the port removed until they’re reasonably confident that you won’t need it anymore. Getting approval to have it removed was an acknowledgement by my oncologist that I’m past the worst of it.

Anyways, I was led to the waiting room and given the sartorially elegant hospital robe to change into. It was nice to be able to keep my undies on for once, safe in the knowledge that my anoos would not be violated…for once.

No sooner had I changed that two nurses set about putting in a cannula. I’ve been told on numerous occasions that I have lovely veins, and but for my reversal, nobody has ever had an issue tapping them. The veins in both my elbow and hand were standing out like sore thumbs but the younger of the two nurses decided that a vein in my forearm that was completely invisible to me was the right one to go with. She did a test and her explanation for there being no blood return was that the needle must have been situated on a valve, as opposed to not in the fucking vein AT ALL.

I met the interventional radiologist that would be responsible for my procedure, as well as his cronies. One of them sniggered as I recounted my medical history – piece of shit.

And then I waited. And waited. And waited some more. The ward was a hive of activity, but it consisted of nurses and doctors walking in and out of the lunch room, with various baked goods. I had come during a morning tea and NOBODY gets between medical practitioners and their lamingtons.

I was finally wheeled into theatre, hopeful of getting at least some Midazolam to take the edge off. They took an x-ray to check the location of the catheter in my jugular before they go to the ‘fun’ part. The x-ray was different to my usual scans in that it was simply looking down, as opposed to a cross-sectional scan which my CT scans are. The result was that my lungs were filled with dozens of black ‘spots’, as if I had been shot with a shotgun. My anxiety immediately went into overdrive until I asked the radiologist and he twigged, assuring me that they were blood vessels, as opposed to multiple metastases. We laughed and he reassured me that if he saw anything on it that caused him concern’s they wouldn’t be removing the port.

I then steeled myself for what was the worst part of having the port put in – the local anaesthetic. I like to think that I have a pretty high tolerance for pain and this had me wincing like I’d been kicked in the balls. Thousands of fire ants crawled into my chest and before I knew it, I saw the glint of a scalpel.

The head honcho decided to let one of his cronies do the cutting and while in hindsight I regret allowing it to happen, he was pleasant and told me what was about to happen the whole time,

The videos on YouTube showing port removals, and all the anecdotes I’d read re same led me into a completely false sense of security. It took FOREVER for them to even access the port due to the star tissue having formed an inpenetratable pocket around it. At one stage, I actually heard a ‘twang’ sound as they cut through a band of scar tissue.

Then came the tugging, coupled with the cutting, as they managed to get the forceps on the port itself, and were trying to pry it from it’s home like a caesarian hippo. At one stage the forceps, or scalpel, I’m not sure which, slipped and plunged into my chest/shoulder, waaaaay past the limits of the local anaesthetic. I haven’t screamed like that since my surgeon tried to yank my drip out a few days after surgery. One of the nurses helpfully wiped the tears from my cheeks, held my hand and said “You’re doing so well, sweetheart”. Bless her – she continued to hold my hand and let me squeeze it like a vice each of the four times they topped me up with local anaesthetic. Surely that must be some sort of record.

Finally, the radiologist waved my port above my face like a clock when you try and hypnotise someone. I asked if I could take it home and the tear-wiper dutifully took it away and cleaned it up a little so it was less of a biohazard risk.

They then set about stitching me up. You know those dudes who hang themselves from hooks and you see the all the skin stretching etc…yeah, it was like that. Each knot was pulled harder than the last, and at one stage, I thought the doctor had been an upholsterer in a past life. Those stitches were internal, whereas they intended to use glue to close the wound itself, as it heals faster, and gives a better ‘cosmetic’ result.

They wheeled me back out where I was met by the same nurse, who kindly got me some laminations, a juice, and and a muffin. She ripped the cannula out of my arm, which did nothing to alleviate the dull throbbing, and sent me on my way, with a couple of pieces of paper setting out what I needed to do, and not do, in the coming days/weeks.

I faithfully followed those instructions, and far from having a neat, pencil-thin line such as that promised to me, I have a gaping stab wound in my chest which has only today, some 3 weeks after it was removed, started to show signs of starting to heal.

I am yet to regain full strength or movement in my right chest/shoulder, and I’m hoping that it is just a normal part of healing from the procedure, as opposed to something more permanent resulting from the cronie playing ‘hide the surgical instrument’ in my chest/shoulder.

There is a huge amount of scar tissue which can be felt at the site of the wound, hopefully, with time, it will settle and soften, just as the scars on my stomach have. The worst thing about having it removed is being unable to swim until it heals, and I can’t tell you how pumped I am to get back out in the surf with the GoPro.

I have another scan coming up in a few weeks, the day after my birthday actually, and a colonoscopy scheduled the week after. Talk about a shit-tonne of fun. The scanxiety has already started to set in, I think because the timing of it is such a big milestone. It will be almost 2 years since I had the bowel resection which technically put me into remission, based on (a) having a complete pathological response to neo-adjuvant treatment (no cancer in what was removed) and (b) scans taken shortly after surgery revealing no spread anywhere else.

Statistically speaking, the majority of recurrences occur within the first 2 years, and almost all of them within 5 years, which is why, after half a decade, you’re declared cured.

For me, that date is 18 March 2021, and every quarterly blood test and 6 monthly scan which comes back clear makes my odds of hearing those words that much greater.

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

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Noho me ka hau’oli

A tad over two years ago I found out I had a Mexican fugitive hiding in my ass and last night I had Mexican for dinner.

I originally had plans to be in Hawaii for the 2nd anniversary of my diagnosis but unfortunately, like most things in life, that didn’t pan out.

What did (and still is) pan(ning) out is the best trip to Hawaii I’ve ever had, and that’s saying something given this is at least my 7th trip.

I’m typing this overlooking Kalakaua Avenue, which is the main drag in Waikiki. If you were here you’d hear cars, music, singing and even still, at nearly 9PM, the sound of waves lapping against what is arguably the most famous beach in the world.

This trip is like no other for so many reasons: It’s something I’ve wanted since I was first diagnosed, confident, but never sure [you can’t be], that I’d make it; It’s our first proper trip with Annabelle of any significance; It’s the first trip that my sister and her partner, Dad, and us, have truly relaxed and hung out since Mum died; and it’s the first time in a long time that, notwithstanding niggles which my anxiety tells me is going to be the end of me, I’ve barely thought about Cancer.

The last sentence is a bit of a lie. Even in this paradise, it creeps into my thoughts at least a few times a day, but something has changed. I’m no longer worried. Of course I’m worried that it will come back and all that yahoo, but I can’t control whether it does or it doesn’t, and so in that sense, I’ve finally realised there is little point worrying about it.

When we checked in, we were upgraded thanks to the generosity of a handful of lovely friends who we consider family, even though by blood, we’re not. I’m typing this from the 21st level, overlooking an inky black Waikiki Beach. When I first saw the room, and every other time I’ve been in a room of such a height, I’ve shied away from the balcony, and appreciated the view from the safety of the room.

It’s different now…

I’ve stood, leaning on the railing (but not too much, I’m not fucking stupid after all), and looked out over Waikiki Beach, and Diamond Head below me. But this time it’s in awe, as opposed to in fear, almost as though, for some reason which I can’t explain, I deserve to be here.

I’ve loved sharing this trip with my sister and her partner, brother in law, best mate and his family, Dad, and of course, Lyndell and the Raptor. But there are two things that stand out, and that I will remember til I no more: (1) Introducing my daughter to the colour, music, and vibe of Hawaii; and (2) Re-introducing my Dad to Hawaii in circumstances where he hasn’t been here in almost 20 years.

I’ve spent a day with a bloke and his wife who until then I only knew through Flickr (photo sharing site) and had one of the best days ever. I’ve done laps of our hotel pool underwater to the cheers of Annabelle. I’ve eaten burgers that require more than 5 napkins to clean your hands. I’ve walked down the street, forgetting who I am, or what I have to do, other than meeting someone for lunch/dinner/another cocktail.

As is the case with all my trips to Hawaii, I’ve put on weight, although truth be told I’d put on weight before I got here. There is a beautiful complacency with grazing for a day or two, and then skipping the odd meal, only to more than make up for it, both in terms of taste, sustenance, and replenishment, the next time around.

On a purely selfish note it’s incredible knowing that a bunch of people who I love dearly travelled huge distances, and endured delays and annoyances to get here, to spend time with me. I’d like to think that even without my diagnosis, perhaps they would still have made the trip, but I now that it wouldn’t have been now, and I know that it wouldn’t have been en masse like this.

This whole trip, I’ve had too much food, too much sun, and lord knows, too much alcohol. And I know that when we get home in a few days, that life goes back to ‘normal’. Back to work, back to home life, back to a life where Cancer is always in the back of my mind, and sadly, often at the forefront.

But at the moment, and even in the knowledge that I have to go back to the ‘real world’, life is good. It’s better than good. I can’t for the life of me imagine life being better than it is right now at this very moment.

I have a job that I love, and which has allowed to meet so many wonderful people who I am fortunate enough to call friends; I have friends who have become family; I have family who are prepared to meet me on an island in the middle of the Pacific Ocean, and others who can’t be here but make sure I have the best fucking view of it you can get; I have a wife who, if you looked up the definition of ‘strength’, you’d find a picture of her (no doubt sipping a Hawaiian Mule); and I have a daughter who, despite the fact that drives me fucking crazy, is the most marvellous thing I will ever do in my life, and who has so thoroughly enjoyed her first holiday.

And so on that note, Noho me ka hau’oli (“Be Happy”).

Aloha and until next time, be kind to your colons, and each other

Toilet training and trusting farts

It’s been 3 weeks and 4 days since I had my ileostomy reversed so I thought I’d give you an update on all things fecal.

Hospital Stay

I met my surgeon and anaesthetist just prior to going into theatre. My surgeon advised that the wound would be closed using a ‘purse-string’ suture and would heal via secondary intention, as opposed to being completely closed. He explained that it would take a tad longer to heal, but that it would result in less scarring, and there would be less chance of infection. Given I’d already been given a healthy dose of Midazolam, I wasn’t really in any state to argue with him.

Surgery took a little longer than expected because being the awesome healing machine it is (remember how my body closed around the wound drain in my first surgery?), the stoma had well and truly attached itself to my stomach muscles and abdominal wall. Other than that, it apparently went according to plan and I woke up a few hours later a little foggy and with a lot less baggage.

The following morning I was up and about and my stomach was already exhibiting signs of life. I graduated to a fluid diet from lunchtime onwards and but for an impromptu spew (I think from taking on too much of the ass flavoured broth), things were fine. Later that evening my bowels fully awakened and in the words of my surgeon, things were a tad ‘chaotic’. I didn’t get much sleep that night and every trip to the bathroom felt like I was shitting molten razor blades.

I graduated to solid food on Sunday, and was given something for lunch that I was told was chicken. Truth be told I have no idea what it was. That evening the surgeon told me I could go home that night if I wanted, but I requested to stay another night, if nothing else so that I could have another meal of solid food before I went home and was fending for myself.

After ‘pork’ for dinner, and wheat-bix for brekky, I was discharged and sent on my way with the cheery wishes from my nurses that they hoped to never see me again.

It would be remiss of me to not mention my roomies during my stay in the hospital. I didn’t have the luxury of a single room this time, although the first afternoon/evening I had the room to myself until just after dinner.

The first two patients were brought in just after dinner on Friday who had had prostate surgery. Their surgeon was pretty much the worst example of a ‘professional’ I think I’ve ever encountered. He was Asian, and could have been mistaken for Leslie Chow from ‘The Hangover’. To the first patient, he exclaimed “you have infection bladder” before making this weird noise that was between a laugh and a sob. To the second patient, he says “How you feeling? Good? Excellent. I’ll see you in a few weeks…oh and cancer came back” with an awkward laugh. The patient asked for clarification and the surgeon replied “the bladder cancer came back. I had to do some more cleaning up. I’ll see you in a few weeks” and then walked out. My heart dropped for the pair of them, but particularly the second fellow.

Fortunately, the second fellow was discharged the following morning, and hopefully his first stop was the Healthcare Complaints Commission. Patient number one was with me for the long haul however.

Patient number three replaced number two and he seemed to be on first name basis with all of the nurses and orderlies. Turns out he was a frequent visitor. A lung cancer survivor, he now had emphysema and had about 60% lung capacity. It took him a solid 20 minutes to walk across the room to use the amenities and then at least half an hour of deep breaths to recover. Didn’t seem to stop him ducking out to buy chocolates or have a quick smoke however… Fuck. Me. The worst thing about that bloke though was that he just. did. not. sleep. I mean, EVER. Overtime I woke up to thread a turd through a needle, the bastard was wide awake watching TV. Maybe it was all the steroids he was on to help his lungs function but was an enigma. He was still there when I was discharged.

Patient number four was a fellow who I worked out was a couple of years younger than me (having overheard him recite his DOB to get his pain meds) who was in hospital for pancreatitis. He seemed to be in a fuckton of pain and the meds were barely making a dint. I felt sorry for him until the morning of my discharge when I overheard the surgical team talking to him and I discovered this was his 6th admission to hospital in as many months, and was all down to his drug and alcohol use.

Back to patient number one, because this bloke really took the cake. He had a urinary catheter but one which came out of his abdomen, as opposed to his old fella. I noticed him struggling to get out of bed so I asked him if he wanted me to get the nurse. He said yes and I dutifully pressed the buzzer. When the nurse arrived and I explained it was for him not me, all hell broke loose. It turns out that the old bloke’s catheter had exploded and bloody piss had soaked his bed, his clothes, and had spurted over the walls and floor. I hadn’t been able to see because I was lying down in bed. All of this happened and the bloke didn’t say a single word. Incredible.

Needless to say, Im sure you can understand why I was glad to be home.

Home is where the shart is

I was home on the Monday morning, only 3 days after surgery.

The Monday and Tuesday were, quite simply, hell on earth. There were times that I longed to have my ileostomy back, if for no other reason than to give my napalmed asshole a rest.

Have you ever noticed when you have diarrhoea that it stings? It’s because of (a) there’s an increase of bile in it, and (b) water is actually pretty abrasive. Both of those combine to make for a pretty miserable existence, even more so when you’re on the can every 5 minutes.

Fortunately, 3 Imodiums later and things had settled down. I found that eating bland foods like bread rolls and chicken helped to slow things down and it was at that time that things started to improve.

Gradually I started introducing different foods into my diet, cautious not to put too much stress on my recently reconnected join. That was until about two weeks after surgery when I decided to throw caution to the wind and put my pipes through their paces.

I started with chicken nuggets. Nada. Then we had dumplings for dinner. Not even a peep. A chicken schnitzel with pepper sauce and a pint of beer had no effect whatsoever, and neither did the following 6 beers, or the Thai curry we had for dinner that Friday night. Pushing my luck, I had some paella with spicy chorizo which had been fried. Again, nothing. After a successful consult with my surgeon, and his reassurance that things were going well and I could expect to return to almost normal in the future, I celebrated with two Indian curries. Again, not even a peep.

Since those three Imodiums, I haven’t had to have any more. Fortunately, all of my turds have been soft and perfectly formed, albeit on the small side. They’re like dwarf poo. Except for one, and it was glorious. I still feel urgency, but have never felt like I’m going to soil myself. My surgeon said that if I’ve survived this far without shitting myself, the odds are pretty good I won’t fill my pants from here on in.

Unfortunately, one of the hardest things for my new plumbing to get used to is only having to go to the can once or twice a day. On a good day I might go 4 or 5 times, and each time is a small cluster of craps, while on a bad day, I might go 12 or more times. Last night for example, I couldn’t go more than 10 minutes without having to visit the latrine, resulting in me getting about 1/2 an hours sleep in total. The surgeon says that it will improve in time, and that I should be grateful that I’m doing so well so soon.

How am I feeling after it all

Physically, I never thought I’d feel so happy to do a shit. Each day/week is better than the one before it and it removed any anxiety I had about having the ileostomy reversed. The pain was much more manageable for this operation, and by the time I went home, I was only having Panadol. The wound is healing nicely, and instead of resembling a bullet wound on my stomach, or perhaps an impromptu pen holder, it now looks like a small dent, as though someone attacked me with one of those melon-ball scoopy things. By only half closing the wound, it heals from the inside out, essentially filling itself in as it heals. Crazy, eh?

Mentally, it’s a mixed bag. On the one hand I’m ecstatic. Looking down and not seeing a bag is the most liberating feeling. Not having to tuck my bag in when getting dressed, or worrying about it filling up when I’m at dinner or the pub is a huge relief. I rolled over onto my stomach for the first time in 12 months today and it felt incredible. I like to think that I adapted to having a stoma pretty well, and yet no longer having it shows just how hard I found it.

It’s also pretty emotional. I look in the mirror and now see a vertical scar on my abdomen and a hole. It is a constant reminder of what I’ve been through and the toll that it’s taken on me. Cancer has taken so much from me and my family over the last 18 months, and not just my rectum. This last time in hospital was much harder for Annabelle, no doubt because she was older and understood that I was sick. She also understands that I can’t lift her at the moment and the look on her face shows that she doesn’t like it. Of course, that’s short lived, and as I’ve said many times over, I can’t complain when so many people don’t get the luxury of having these problems.

So what next?

Healing, and getting back to normal, whatever that turns out to be. I’m back at work, although I had to take today off due to not sleeping last night.

We’ve also booked our trip to Hawaii, which will be a well deserved break for us all, but particularly Lyndell. Hopefully some cocktails by the pool, perhaps some massages and some serious retail therapy will go some way to paying her back for the stalwart effort she has put in over the last 18 months. We told Annabelle and she is so excited, she keeps asking if we can go now. It will be her first proper holiday and we know that she will just love it.

I’m the first to acknowledge how fucking incredibly lucky I’ve been so far in terms of both tolerating and responding to treatment, recovering from surgery, and adapting to the various challenges I’ve been thrown. Without a doubt I couldn’t have done it without Lyndell. In every aspect of my life I’m surrounded by strong women, and that is no more evident than at home when I look at my wife and daughter. There’s more than a few Lavaflows with your name on them sweety when we get to the Aloha isles xx.

So that’s it for now guys, and all things going well, I suspect it will be the last post for a while. Other than quarterly blood tests and 6 monthly CT scans, there’s not much more to tell you. I’ll do brief updates on my colonoscopy and scan results, and when I have my portacath taken out and of course I can’t not write about our trip to Hawaii, but to be honest, I hope that I never have anything newsworthy to report, because, as the saying goes, ‘no news is good news’.

Thanks for coming along for the ride folks. I hope you’ve had some laughs, maybe learned a bit, and if nothing else, appreciate how fortunate you are to pinch off a loaf each and every day like clockwork.

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

Peace out

 

Not without my Stoma

This time in a week I will have likely commenced my fasting for my last (hopefully) ‘major’ surgery, which is scheduled for some time on the 17th.

I had my pre-surgery clinic today which was essentially a waste of time, although I did have the pleasure of having a lovely nurse tell me that I’m not the usual person they see coming through the doors with bowel cancer. ‘No shit’, I thought.

Anyways, I met an anaesthetist in so far as he walked past, stopped in the doorway and waved, and then I gave blood for the purposes of finding out my blood type (I’m O+, and have been every time I’ve ever had my blood tested, but they need to be super, super sure) and making sure that I don’t have the AIDS.

The only real shock today was the nurse telling me that I would likely be in hospital for the day, overnight if it was an afternoon procedure. All of the reading I had done suggested that I would be in there for a good few days, waiting for my digestive system to reawaken and spring back into turd processing life.

When I queried her about same, she looked at me and explained it was simple surgery and seemingly no more complicated than removing an ingrown toenail. In regards the former she’s right to a certain extent, and re the latter, well I’m somewhat of an expert when it comes to removing those fuckers and even they can be tricky.

To be fair, I’m expecting the equivalent of a long weekend inside, and hoping to be out by Monday. If I’m out before that, great. If not, all good as well.

What will they do?

They cut a hole around the stoma, down through the muscle (and fat, lots of fat) until the stoma separates and is free. They then trim the sides, but don’t offer lipo or even sculpting (slackers) and then get to work reconnecting everything.

The easiest way to think of a stoma is to think of a thin sausage which has been doubled over on itself and then cut along the fold at the top. The result is something that resembles a volcano, with a larger hole, where the waste comes out of, and a smaller hole, being the opposite side which also releases some mucus because the digestive system still likes to do shit, even when it’s not doing shits.

Those ends are stitched back together and then my intestines are pushed back into my abdominal cavity. The join is tested for leaks and if all is well,  they stitch me up in layers from the inside out.

The whole thing should take between 30 minutes and an hour.

After my propofol nap, they send me back to the ward for a short rest before getting me out of bed and doing shit (hopefully literally). Their main concern is my bowels ‘waking up’ and getting back to business. Sometimes that can take hours, other times it can take days, and sometimes weeks.

Prior to my clinic I had read a study where they were introducing food at an earlier stage post surgery, as opposed to the usual protocol of waiting until there was evidence of bowel movement – stomach gurgling, farts, or a good ole fashioned fart.

The reason being is that strangely enough, our intestines don’t like being handled, and they go into shock, called ‘ileus’, which is when their usual action (peristalsis) comes to a halt and the shit hits the fan (well, gets backed up and causes problems).

The short stay estimate I was given suggests that they are utilising this new protocol because hopefully, they have some evidence that it works.

Recovery

Recovery from this surgery is two-fold: First recovery from the actual surgery/wound; and Second, getting used to shitting from my anoos, as opposed to into a bag.

The former is pretty straightforward. No heavy lifting for up to 12 weeks and light exercise like walking to promote healing.

The latter is where the problems lie… You may recall from an earlier post that my surgeon took the majority of rectum out to ensure he got clean margins. The irony of course is that the neoadjuvant treatment was so successful that any margin would have been clean but that’s another story.

The result of losing most of my rectum is that they took away most of my waste warehouse. My surgeon helpfully built me a custom made one from part of my large intestine but it needs to learn to work as a rectum, as opposed to a colon.

The other problem is that I also had a portion of my sigmoid colon removed, and my descending colon was fashioned into my new poop storage yard. The colon’s main job’s is to remove water, and because some of mine was removed, and part of it was turned into a rectum, it won’t be able to absorb as much water which means… I’m about to buy shares in immodium.

Some people who have had similar operations speak of permanent bali belly, only stopped by kilograms of ammonium, which in turn blocks you up faster than Trump working for the TSA on the Mexican border.

The thing is, I won’t know how my body will react until it’s done. One thing that gives me some confidence is that I didn’t manage to shit myself after my barium enema which suggests that the ole turd cutter is still in good nick.

What then?

Hopefully, life as usual.

I’m really looking forward to going to beach and being able to swim and sit on the beach and have people look at me because I’m fat and not because I have a noticeable bulge that is a bag of shit attached to me. Don’t get me wrong, you can swim with an ileostomy, and many people do, for me it was more of a self conscious thing. I don’t mind people seeing my scars, but the bag was taking it a step too far. I take my hat off to those who can get past that aspect of things and show off their bag with pride, they’re stronger people than me.

I’m looking forward to being able to lie/sleep on my stomach. Sounds so stupid, right?

I’m looking forward to not being self conscious about whether people can see the bag under my shirt, or worrying that it’s leaking and I just don’t know yet.

I’m looking forward to being able to play with Annabelle and pick her up/wrestle without her accidentally kicking my stoma.

I’m looking forward to not smelling rancid shit each and every morning when I change my bag.

I’m looking forward to thinking that people see me as a normal person again. A lot of people have said that they don’t even notice my bag, and when I wear my suit to work they likely don’t. But I know it’s there, and no matter how hard I try, I can’t help but feel that everyone else does too and they’re. always. staring. at. it.

Most of all, I’m looking forward to/ hoping that my daughter stops thinking that going to the hospital is a normal thing. I hope she stops asking me “Are you alright daddy”? and “Can we go to the hospital”? thinking that it’s as normal as going to the park. Annabelle had a rough start to life herself, and she has passed those hurdles with flying colours, but in addition to that she has to see her dad lying in hospital beds with tubes coming out everywhere, shitting in a bag, being tired all the time and flinching when she accidentally kicks me. But by the same token, at least she has a dad, which so many kids unfortunately can’t say.

Lyndell as always, has been, and is, amazing. We haven’t spoken about it but I know that she must be worried, and I know it must suck being powerless while I’m in surgery, let alone having to look after our now 3yo terror, and a grown ass man who will likely be wearing nappies. I know that Annabelle gets her strength from Lyndell (and her temper/stubbornness from me) and I’m so fortunate to have such courageous women in my life.

So, we’re now up to speed, and my next post will either be “Hey, check out my new brown pants” or “Look at me, I’m shitting like a big boy again”.

Until then, be kind to your colons, and each other.

 

2016 – Anus Horribilis: A year in review

This year was a mixed bag. Some awesomeness, a fair amount of misery, and various things shoved up my date. Here’s a quick summary, channeling Clint Eastwood, who somehow managed to defy the celebrity odds and survived 2016:

The Good

I suppose the starting point is that I’m alive to write this post. There was never any real doubt that I wouldn’t be, but I did give it a red hot go by OD’ing on morphine, losing 10% of my bodyweight in 48hrs, and doctors thinking I’d had a stroke.

I no longer have cancer, and haven’t had cancer since my surgery in March.

I had a complete pathological response to neo-adjuvant treatment which is not only pretty fucking cool, but also not all that common if you read the journal articles.

I was discharged from my radiation oncologist with the cheery advice that the cancer was unlikely to come back.

But for one bad round, I managed to smash through my final 9 rounds of chemo without any major (see below) issues.

My post surgery scans and blood tests have all come back normal which is a positive sign.

I got notification of my surgery date to reverse my ileostomy so I don’t have to shit in a bag for that much longer. That will be nice.

I have been fortunate to have had the ongoing support of my wonderful wife who is one of the strongest people I know. I’m certain that I wouldn’t have had the same response without her being there, attending treatment and appointments with me, and looking after our terror, as well as me, so that I could focus on getting better.

My little monkey, while driving me crazy on a daily basis, is growing into a funny, kind, adorable little person. Even better is that my dad is now able to spend more time with her and is really developing a wonderful relationship with her, something that he couldn’t do while caring full-time for mum (see below).

I have a wonderful bunch of friends. I’ve had a ‘Meatiest’ put on in my honour prior to my surgery. I’ve had people attend various treatments with me which made them almost fun. We had people cook us meals so that we don’t have to worry about it after a long day at the infusion centre. Thank you so much – that party is getting that much closer every day.

The Bad

I lost my beautiful little mum, who passed away less than a week after I finished chemo. Maybe she was holding on long enough to make sure I’d get through it, maybe it was just pure coincidence. For someone who had every right to be mad at the world and to complain she never did. Other than Lyndell, probably the strongest woman I know, and who did so much for me. She introduced me to ancient history and supported my wanting to be a lawyer ever since I can remember. I miss her so much but am glad that she’s no longer in any pain.

Not even 2 months after mum died, my grandma, my last surviving grandparent, died. I’m fortunate that Annabelle got to meet her great-grandmother, as well as Lyndell’s grandfather as well (see below). I always had a soft-spot for my Nanna, and being one of two grandchildren, my sister and I were spoilt rotten by her every time we saw her. She was one of the loveliest people I’ve ever had the pleasure of meeting, and so  fortunate that she was my Nan.

I’m absolutely gutted for my dad. In addition to losing his wife and mum, one of his closest friends died of a similar condition to the one mum had. I was lucky enough to know his friend as well and I know that his death, only a week after mums, really rocked dad to the core. I can’t imagine how my old man keeps going, particular given he has his own health problems. To describe him as a hero is selling him way short.

My wife lost one of her close friends from uni in tragic circumstances only 2 weeks before Christmas. Having to break the news to her was one of the hardest things I’ve had to do and I can’t even imagine how her husband, a wonderful fellow, is coping.

Just as 2016 rushed to an end, and we thought that we couldn’t endure any more sadness, my wife lost her beautiful Pa. He had been diagnosed with bowel cancer some 20+ years ago and had a recurrence in recent years, which, but for palliative care, was unable to be treated. He was a remarkable man, who grew up on the land but made a point of travelling the world, and documenting it in photos. An enduring memory of him will be our daughter singing and dancing while he played the violin to her. Annabelle was so lucky to be able to meet such a great man.

The Ugly

I’ve had a number of things shoved up my anoos this year: cameras, staplers, more cameras, hoses, dye.

I’ve had my pelvis irradiated such that for a while my shit resembled molten lava and it felt like I was pissing razor blades.

I’ve been shitting in a bag since March. Overall, it’s not that bad, but it’s a different thing entirely when it leaks at 2am and you have to clean yourself, change the sheets and then spend the rest of the night worrying that it’s going to happen again. If you think your turds stink, try smelling output from an ileostomy first thing in the morning. To quote Rn Burgundy, “It stings the nostrils”.

In the space of 48hrs I lost over 8kg through diarrhoea. That’s a lot of shit. You know the warnings on the back of Immodium packets about the maximum dosage? Yeah I smashed that out of the park.

I have peripheral neuropathy in both my hands and feet. My fingers are affected down to my palm and my feet alternate between feeling like I’m wearing a wet sock, and feeling like I’m walking on shards of glass. I can’t even walk on grass barefoot.

I have chemo-brain. It affects my memory in different ways and the best way to explain it is to imagine a fog hanging over every memory and everything happening in slow motion. It has really affected my confidence, particularly in court, which really irks me. Maybe others can’t see it, and maybe they can. I know it’s happening, and perhaps that’s the worst of all. Perhaps it really is “all in my head”.

I have ongoing anxiety which spikes every 3/6 months in the lead up to blood tests/scans to monitor whether the cancer has returned. I can feel it in the weeks leading up to it and it makes me a shit (shitter) person to be around.

So what’s next?

I’m booked in for my ileostomy to be reversed in mid-February and at this stage will take 3 weeks off to recover from same. I’ll save the details of that op for my next post but suffice to say, I’m more concerned about the recovery than the surgery itself.

My hope is to have my portacath removed at some stage this year, although the odds of that happening seem slim. If I can manage to have clean blood results/scans for the remainder of this year, I may be able to convince them to take it out at the end of the year, or early next year.

Other than that, and regular blood tests/scans, cancer-wise, I’m done. If only it was as easy in reality as it was to type that. While I was having treatment I wanted to simply get on with things and ‘move on’. Ironically, the further I get from diagnosis and treatment, the more it seems to play on my mind. I can’t tell you exactly how it’s changed me, and perhaps I never will be able to put it into words. I can’t even tell you whether it’s changed me for the better or worse. Only time will tell.

What I can tell you is that 2017 is looking good, albeit this post is written at the end of the first day of the new year.

Workwise I have some huge trials coming up this year which are both interesting and challenging.

I’ve been approached to participate in a clinical trial determining whether aspirin helps against recurrence. There’s also some exciting plans in the pipeline which I’ll keep you posted about in due course.

On a family/personal front I’m looking forward to a trip to Hawaii for a long, well deserved break as well as some trips to New Zealand and some interstate jaunts. And that party is getting so much closer.

So folks, until next time, be kind to your colons, and each other.

Peace out

And we’re in…

Warning – this post is entirely about my ass, things going into it, and things coming out of it… You’ve been warned.

I recently ‘celebrated’ a year since my diagnosis. Not with champagne and caviar. Not with a cuban cigar and a 30yo single Malt. No, I celebrated with a rubber hose being inserted into my anus and my bowels being flooded with contrast dye while they took photos.

On Friday I had a Gastrografin Enema, which was about as fun as it sounds. Essentially, it’s a leak test, and is the final step to make sure that it is safe to go ahead with reconnecting my small intestine, pushing it back inside where it belongs, and stitching me back up.

You’d think I’d be used to things going up my ass by now. At least two fingers have gone up there, a camera, and a stapler, and that’s what I’m aware of. But(t) for the fingers however, I’ve been asleep for the remainder and so have been blissfully unaware of the discomfort. I wasn’t so fortunate on Friday.

There are two types of contrast material that they use to check the anastomosis; Barium and Gastrgrafin. Barium is the usual contrast of choice, but Gastrografin is preferable in cases such as mine where there is a risk (albeit tiny) of there being a leak. You see, Barium leaking into the abdominal cavity is bad news. Like, medical emergency bad news, whereas if some Gastrografin leaks out, it’s more ‘meh – unfortunate but it won’t kill you’.

I was met by Cameron, the Radiation Technician and Neisha, a student in the last year of her degree and shown into a room that looked like it was off the set of ‘Hostel’. On an aside, why is that whenever I have to drop my pants and have a medical procedure, there is always a hot chick?? Anyways, I digress.

They went through what was going to happen in cheery tones, trying to skirt around the issue that they were both going to see my anoos. Any dignity I had left after finger tests, colonoscopies, rectal surgery, sponge baths, CT scans disappeared like a fart in the wind.

Then came Ross the Radiologist (note the alliteration), a fellow who looked far too young to (a) be sticking anything in my anoos; and (b) be anywhere but the paediatric ward of a hospital. Fortunately, he confirmed what I had hoped, that they would be doing the abridged version of the test today, as they were principally interested in the anastomosis site, as opposed to checking the entire 5ft of my large colon. This pleased me greatly, as it meant I only had to turn from my side to my back and not a full 360*.

Before I knew it, I felt the cold stickiness of the lube and the foley catheter at my balloon-knot and then heard Ross say “gentle pressure, gentle pressure, and we’re in”. Having not had anything pass by the turd-cutter for some seven months, it was a strange sensation.

Ross then helpfully prepared me for the pending onslaught with the comforting words “now comes the uncomfortable part”. With that they began flooding Miguel’s former home with a combination of contrast and air to distend my bowel and put it under pressure to test it’s structural integrity. My flinching, grimacing face and single tear rolling down my face as I yelped “I think that’s about enough” brought with it the comforting pat on the head from another nurse who had managed to sneak into the room while my pants were down. “You’re doing well, darling” she said, like I had a choice to be there at all.

They turned the screen so that I could see the contrast material flow into, and throughout my large intestine. Of most interest was being able to see first hand the anastomosis site, which came with an added surprise.

You may remember I described the anastomosis procedure in an earlier post. I had always assumed that my surgeon did what is called a simple end-to-end anastomosis which means they take the healthy part of my large intestine, and staple it to the end of the healthy part of my rectum and Bob’s your uncle, all done. Kind of like removing the muffler and instead having a straight flow exhaust. What I saw was a custom made rectum, fabricated by my surgeon by doubling the end of my large intestine back on itself and cutting it to create a pouch that would serve as a new rectum. It may not mean much to you guys but it has huge potential for me down the track. Having a shit warehouse again means that I hopefully won’t have to spend as much time on the throne once things are hooked up. The reason being that the large intestine is almost constantly moving by a process of peristalsis. Imagine a caterpillar crawling and that’s kind of what it’s like. It constantly moves to push waste along. If it were an end-to-end/straight through, then my digestive system would simply continue pushing waste until it hit what was left of my rectum, and I would have little time to find a latrine before shit literally got real. This way, things may be a little kinder, but only time will tell.

Many images were taken, and Ross helpfully pointed out various parts of my anatomy that we could see on screen. Next thing you know, Harry came in, because clearly there weren’t enough people in the room while I had a garden hose up my date, and he confirmed that all was well and my torture session was over.

I then scampered to the loo/change room and bore down, opening the flood gates and recreating Niagara Falls with my ass. After what seemed like an hour, but was in reality a few minutes, I slipped a gigantic cotton gauze pad that resembled a sanitary pad for an elephant into my pants and went to talk to Ross to get the good news.

No leaks, no strictures (tightening of the bowel), and from what they could tell, no adhesions (sometimes during surgery the bowel can ‘stick’ to a different part of the peritoneum and cause pain/complications down the track). I was sent home with a cheery smile that we both knew meant “I hope I never have to be that close to your anoos again”. That makes two of us Ross.

Having survived the next few hours, I have a new found respect for women who encounter cramps on a monthly basis. For the blokes out there, imagine being constipated for a week, and the turd is pressing both on your asshole and the top of the pipe. And then imagine someone punches you in the stomach, which breaks up the turd, and leaves a small gap which is immediately filled with air. And then imagine that someone grabs your intestines and gives you a chinese burn. That’s almost what it felt like.

I managed to make it home (and indeed through the next couple of days) without shitting my pants, or leaking any contrast fluid. That may not sound like much of an accomplishment but for someone who hasn’t used their anoos muscles for seven months, it’s equivalent to winning the Nobel Prize for Shiteracy.

Anyways, I survived, and as has been the case with all of my medical adventures so far, was bloody interesting, albeit a literal pain the ass and something that I never want to go through again.

Next step is to see my new surgeon and get a date to be put back together.

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

Move along, nothing to see here

So it’s been some time since I last wrote an entry and I’d be lying if I said a lot hadn’t happened in that time so this is just a quick catch up.

Buoyed from the stellar pathology results, I awaited my appointment with the oncologist to ascertain when we got back to the poisoning. It was a strange feeling. On the one hand I wanted to get back to treatment as soon as possible so as to be actively doing something, and if for no other reason than, the sooner I started, the sooner I finished.

The oncology registrar I saw was not near as excited by my pathology results as I was, and was almost blasé about the whole thing. She confirmed that I would be completing a further 9 rounds of chemo, bringing my total to 12, the gold standard of care. She gave me my treatment plan and I saw that the fun began the following week.

Treatment #4 of 12 and beyond

The worst chemo round I’d had was the one immediately before Christmas last year, and I think that was simply because I was disconnected a couple of days before Christmas and so hit the wall on Christmas Day, making it a less than festive occasion. I lay down for a nap at 4pm and didn’t wake up until midnight, and then went straight back to sleep again.

This first round back was a shocker. And by shocker I mean, losing 5kg in a week, being unable to get off the couch/out of bed/and lying in the foetal position crying, unable to move for fear of projectile vomiting. For a week.

It turned out that they were giving me the same dose as pre-surgery, despite the fact that I had lost almost 14kg from surgery and adapting to the ileostomy. The result was that it completely flatlined my liver function, red and white blood cells and basically sent my body into “what the fuck have you done to me” mode where it wasn’t a happy camper.

That shit was changed quick smart and in a hurry when I went back to see them before the next round and the dosage was reduced to match my much more svelte figure. Fortunately since then, my chemo rounds have been relatively uneventful, other than the fact that whereas I used to experience a ‘chemo wall’ at the end of a treatment week, each treatment brings with it a constant ‘fog’ where everything feels much more difficult than it ought.

Clean scans makes for a happy man

Part of my routine monitoring is regular CT scans of my abdomen, chest and pelvis to check for distant metastasis. The tech that conducted the scan was cagey as all fuck and didn’t really leave me with much confidence, although my ‘scanxiety’ was relieved considerably when I had the scans in my hot little hands and was able to compare them to the previous scans and my lay eyes couldn’t discern any difference, of course other than the lack of a big-ass tumour in my butt.

My ability to interpret scans was reinforced when the oncologist rang me and confirmed that all was normal and ‘unremarkable’.

“There is no evidence of disease (NED), you’re in remission and I never want to see you again”

Perhaps the biggest news came from my radiation oncologist in my first (and now last) consult with him following surgery.

I had been reading a buttload of journal articles which led me to believe that in light of the complete pathological response, I was technically in remission. It was another to have that inkling confirmed. I sat down and with a big smile, he said “The scans and blood tests show no evidence of disease following your neoadjuvant treatment and surgery. You’re officially in remission. We’re going to keep a close eye on you for some time but you can put this behind you and focus on being a dad, husband, mate and work colleague. The risk of this coming back is negligible at best”. I raised with him some statistics I had read in some articles about survival rates and he agreed, reiterating that “tumours that respond in the way yours has is a self-fulfilling prophecy, they don’t come back”. He added that he could never give me a 100% guarantee but the smile on his face showed me the level of confidence he had in what he was saying.

Fuck. In less than 10 minutes I had my life back. I saw my future which is something that was hiding in the background of my mind for so long.  I saw myself walking Annabelle down the aisle as a real possibility, and even a likelihood. I saw annual holidays to Hawaii as something more than a pipe dream. In the blink of an eye, all the pain, the overdosing on morphine, the stuck drain, the leaking ostomy etc were worth it.

Are you drunk?

One bit of excitement was an impromptu visit to hospital during the chemo round before this one (I was disconnected today). I turned up to work and while talking to a colleague, noticed my tongue feeling heavy and I was slurring my speech. Apparently it wasn’t noticeable to anyone else but it was clear as day to me. It happened once more a few minutes later and then my lower lip went numb.

Suffice to say, I don’t think that’s supposed to happen and so I rang the treatment centre and it was suggested that I spend the day with them to rule out a Transient Ischaemic Attack (TIA), or mini stroke.

My annoyance of having to take a day off work when I otherwise felt fine dissipated when I met my ER doctor who was a real cutie. I was quite happy to have her perform a neurological exam on me and was relieved I didn’t get a half mongrel when she stroked my thighs to test for symmetrical nerve function.

Another CT scan, this time of my head to check for clots, bleeds or crayons (think Homer Simpson) revealed nothing (other than a brain – I made them double check and confirm this). Of perhaps the most relief and further reducing my ‘scanxiety’ is that they didn’t find any lesions or tumours. It’s uncommon, but not unheard of that bowel/colon/rectal cancer can metastasise to the brain and because it’s not common, they don’t routinely scan the head as part of ongoing monitoring. If nothing else, it was another body part that I can cross off the list as showing no evidence of disease.

They’re not entirely sure what caused it, but their best bet is that it was a dodgy reaction to the chemo, likely the Oxaliplatin. A google search confirmed that same was a rare, but not unheard of side effect. They obviously weren’t concerned enough to stop my treatment, as they hooked me up Monday gone and disconnected me this afternoon.

So where do we stand now?

I only have three more rounds of chemo to go. Apparently, I have already outlasted the vast majority of patients in terms of tolerating the most violent of my chemo drugs, Oxaliplatin. Most people don’t make it to 6 without the drug being removed from their treatment because it’s a nasty motherfucker. I’ve survived 9 and there is no indication that I won’t be able to make it through to the end. Again, the more of that particular drug I can tolerate, the better the long term prospects of remaining cancer free. Micrometastises really don’t like Oxaliplatin, and the fact that my response was so overwhelming prior to surgery puts me in good stead that if anything is left behind, it isn’t happy, and won’t be around for much longer.

After I finish chemo I have another appointment with my surgeon and he will refer me for a barium enema. I’ll save that for another post, but suffice to say, I suspect it’s going to be as uncomfortable as it sounds. The purpose of that ‘exam’ is to test the join between my healthy colon and my turd-cutter and make sure that I’m right to have the ileostomy reversed.

How am I feeling about this whole fiasco?

It’s weird but as I get closer to the end of this whole thing I find myself getting more emotional about the whole thing. Finishing chemo is bittersweet. On the one hand I’ll be stoked to not have to go and spend a day in the hospital each fortnight. On the other, not having any treatment removes that safety net that we’re not actively doing anything and it’s now down to my body resting on the hard work it did/has done so far.

I’m not as concerned about the coming surgery as I was the last one because comparatively, it’s a walk in the park. The operation itself takes between 1/2 hr to an hour and to be honest, I’ve watched it performed on YoutTube that many times I could probably do it myself/ I’m more concerned about the recovery, and getting used to what will be the new ‘normal’ for me in terms of using my custom made anoos. Only time will tell and that’s a story for another post.

I’m looking forward to life getting back to ‘normal’. Being able to sleep without fear that my ostomy will leak, or being self conscious about it when I’m out in public. I’m looking forward to getting back in the surf and taking photo’s. I’m looking forward to being able to sleep in. I’m looking forward to being able to eat all the things I’ve been craving (pretty much anything that has a skin on it). I’m looking forward to being able to eat ice-cream/drink cold drinks whenever I want instead of only every second week. I’m looking forward to not feeling tired ALL THE FUCKING TIME, although I know that this will take some time to recover from. Most of all I’m looking forward to being a better dad and husband, and making it up to Lyndell and Annabelle for the time that we’ve lost due to this shitty situation we found ourselves in.

Lastly, I’m looking forward to my “Fuck you Miguel” party, so I can have a drink with all you wonderful people and thank you for keeping my spirits up and generally being awesome. You fucking rock.

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