Telling it like it is

I started this blog shortly after I was diagnosed for two reasons: (1) to keep family and friends updated about my treatment etc, so I didn’t have to keep repeating myself; and (2) because I’d been told that writing things down, with logical structure, for the reading consumption of others, was a great way of processing things. The first reason was validated from day one, but I’ve never really felt like this was therapeutic. However I now realize there must be something to that therapy claim, because for the last few days I’ve been feeling a real need to write a post, but just couldn’t find a moment between work, travel and kid wrangling.

A couple of days ago we went to see Prof David Goldstein for a second opinion on whether I should do another round of chemotherapy following my surgery in February. Prof Golstein is among the leading experts on gastro-intestinal cancers in Australia.

In short, Prof Goldstein didn’t have a magic answer. Like the other advice we’ve received, he said there was no conclusive evidence on whether chemotherapy worked in this scenario. I think, on balance, he was recommending that we don’t bother with chemotherapy because it’s likely to make little real difference.

What was rather unique about Prof Goldstein was his degree of clinical frankness. He didn’t really tell me anything I didn’t know from my own research, but no doctor has been quite as transparent about my prognosis in their use of language.

He said that because my cancer had recurred less than a year after my initial treatment it was a very bad indicator. He said the likelihood of cancer returning, very soon, was extremely high.

He also said - and this is something I didn’t know - that it was very rare for colon cancer to keep recurring in the liver only. Rather, it was more likely to eventually find its way to the lungs, brain and elsewhere. I had harboured hopes of just having a liver resection every so often and staying alive that way. So this burst my bubble.

I shared several of my ‘long-shot’ treatment ideas with him. One by one he explained why all these ideas wouldn’t work in a case like mine. Some might “buy-time”, but none were likely curative.

Like I said, none of this is really news to me, but for some reason having someone so eloquently describe the likely futility of my situation was a little on the depressing side. I do however really appreciate him telling it like it is.

For whatever reason this Goldstein visit has massively screwed with my head.

As I walked out of Prof Goldsteins’ rooms I happened to glance at some work emails on my phone. I was overcome by a “what the fuck am I doing” feeling. I’ve just been reminded how short my time on earth is likely to be, but tomorrow I’m booked for a brainstorming session on xyz corporate initiative. I’m going to have lunch with people talking about their performance reviews, their angle for a particular role or promotion, or about hopes and aspirations that I once shared, but which are no longer achievable for me. I’ll be asked why I’m being so quiet, why I’m not being my “usual funny self”. I’ll apologise. I won’t explain, or may only partially, because I don’t want to sound negative about my situation - people don’t like that, you’re meant to always be super positive when you have cancer - or be a downer for everyone else. There’s also the constant feeling of inadequacy. As someone who used to define themselves a lot through success at work, who used to always try and go above and beyond expectation, it is a real challenge to accept that I just can’t perform at the level I used to.

I’m lucky, I work for an extremely compassionate and understanding employer, and with great people, but holy shit it can be hard to juggle work and this whole cancer thing. There are many moments when I think it’s stupid trying to maintain that balance, when just working on my bucket list and spending the maximum time with my family seems like a far better idea. And then I remember that I need to keep working for the income, for the insurance and for the daily normalcy and routine it offers…and just in case - apparently huge long shot - I don’t die and still need a career. For some reason this juggle just feels a lot harder after that Goldstein consultation.

It’s not just work. It’s Easter this weekend. There are families out everywhere playing with their kids. I find myself fighting back waves of a weird jealous anger. Why should they be able to see their kids grow up, but not me ? Why should my kids suffer the loss of a parent ? Everyone is enjoying a happy family Easter together and I feel a weight of expectation that I should be too. I just need to take the occasional ‘time out’, especially on bigger family occasions. My mind plays way too many games with me. I look at a scene - my young kids playing with their cousins, parents watching, and I imagine a future - one maybe not too far off - where I’m not there. I wonder if I’ll be replaced ? I wonder how my kids are going to cope with my death. Will they be ok ?

I took my daughter to use a public toilet today. We used a unisex one. My mind wondered off imaging who would take my young son to the bathroom in the future in that window of time where he’s too old for my wife to take him to the ladies bathroom, but too young to feel confident on his own in the men’s bathroom. Will he be alone ? Will he feel alone ?

It feels like I’m living in a parallel universe of thought almost constantly at the moment - way more so after that Goldstein visit. It’s strangely isolating. How do you properly explain why you’re acting a little 'off’ without sounding ridiculous and over dramatic. Maybe I’m offending ? Maybe I’m irritating ? Of course no one else know’s what’s going on inside your head. Honestly, I’m writing this all down here hoping that my family and friends might read it, and that it services as some explanation, because I know I would never find the way to tell them in person.

This whole mental game ends up being so circular. I fall into a deep rut of negative thought. I fight my way out of it - it might take an hour or a day. Then I’m angry with myself. Angry that I’ve wasted good time on a train of negative thought that served no purpose. Angry that by doing that I might, through my behaviour, be affecting people’s memory of me. Then I resolve to do things differently, to make some new short term goals, to be more positive, to not worry about things I can’t control. And that all lasts for a while, until I find that rut again. This rut seems particularly deep.

Apologies. This has been a somewhat confused and rambling post, but honestly, that’s me right now. Confused and rambling.

Again, I have no idea what’s brought this on because I learned nothing new this week. I guess that visit to the doctor has just been a stark reminder of how shit everything I already knew actually is.

Scanxiety stikes again

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