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:
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.
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.
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.