What’s It Like Finding Out You Have A Terminal Illness?

February 13, 2019 | No Comments » | Topics: Life Experiences, TRUTH

(photo: @noahsilliman)

It sucks. hah.

For me, the entire process involved a great deal of disbelief – some of it rather normal, I suppose, and some of it quite intentionally brought about by myself.

I’d actually first noticed the tumor myself.  Not even being out of my 20s yet, I had a hard time believing it could be what I suspected it was, and managed to convince myself it was fairly harmless.  At one point, while seeing a doctor for an entirely unrelated thing, I pointed out the lump to him and he gave it a quick look and feel but didn’t seem overly concerned by it and nothing came of it after that particular visit.  That ended up adding to my own idea that it was something harmless and not worth thinking about much further.

Believe it or not, I went on to essentially ignore it for over another year!  You’d imagine, first thing you’d do when suspecting something was up, would be to run off to every physician imaginable and do all you could about it.  What ended up overpowering any inclination to do just that was, instead, a desire to ignore it and almost wish it away – if I never got confirmation it was something serious and never got diagnosed with something serious… it was nothing serious! 

That time between initially coming across the suspicious lump and finally getting confirmation it was what it was involved many hours of self-diagnosis, thanks to endless hours on medical websites (such as WebMD) from the legit to some pretty crackpot sites.  I’d come across one article that would convince me I’d be dead within a month, and another that would leave me feeling I had nothing to worry about at all; some articles mentioned symptom after symptom I was absolutely certain I had and leave me feeling frightened and anxious, while others would mention symptoms I quite clearly never had and so would convince me I had no reason to be concerned at all; some suggested that bump (and obvious mass, as I could actually feel it when pressing around it) was one problem, while others allowed me to believe it was something else entirely. At various points along the way I was both convinced I had just about every malady one could imagine, alternating with being certain there was absolutely nothing wrong with me at all.

The only reason I finally went through the process of getting confirmation it was indeed cancer involved, again, an entirely unrelated condition.  I needed surgery for a relatively benign thing (“If it involves getting put under, how benign could it really be?”, my dad asked at one point) – gallstones.  The funny thing is, while this suspected tumor had the potential to be some serious business, I ignored it for quite awhile.  The gallstones were not too big a deal, but I was all over them instantly.  Gallstones can make for some serious pain; a tumor can just be kind of painlessly there and unnoticed.  The gallstone pains were immediate and real; the tumor was still kind of abstract, in a way.  Nonetheless, while in the process of getting ready to have surgery for the gallstone problem, I figured it best to point out to the main physician I was dealing with that I had this lump.  After all, I didn’t want it to complicate the surgery!  Odd thought process there, too.  “Hey, doc… I don’t wanna complicate this fairly routine procedure so figured I should point out this possible cancerous tumor”.  He made it a point to schedule some other appointments with other specialists during the whole lead up to my gallstone surgery, and that’s when confirmation was received.  Thank goodness for those gallstones, though, as my absolutely having to go through the process of getting surgery for that is really the only thing that forced me to see these other doctors, follow through with these other appointments, and finally deal with the issue.

While I certainly could have benefited from an earlier diagnosis and that whole year+ of denial was sorta silly, at the very least I suppose it did help me avoid that shock many often feel with diagnosis.  I’d essentially resigned myself to being certain I had *something* by the time it was ever concerned, so never actually went through a phase where I was blown away or overwhelmed by it.

Funny enough… I don’t much worry about myself.  I’ve been all over the world and seen people living in some pretty miserable conditions.  Relative to the overwhelming majority of the world’s population, I’ve lived a pretty fortunate life and have been pretty damn lucky.  Born in to a well-off, close-knit and loving family; financially secure and even well-to-do; going on many years of a stable and fulfilling relationship; having done and seen some remarkable things in my life to this point, how could I ever feel sorry for myself when there are countless kids in Africa who will know little more than suffering before they die short of their 10th birthday?!  In the context of human history, I’ve already made it well past the lifespan most others could have expected.  I’m not some 20 year old getting wiped off the face of the planet in an instant during some war; I’m not some young child who was diagnosed at so young an age I’ll likely know nothing of life but cancer before I die. 

I’m not religious at all, so don’t get – nor do I really need or want – any comfort from that angle.  I’ve always been a pragmatist – to a fault, almost – and I know I’ll deal with things as needed (so far, at least).  It’s my loved ones I feel sorry for the most.  I hate knowing my parents know, and knowing it saddens them as it does.  My partner depends on me entirely as I’m the sole wage earner in the house, and that does cause me some anxiety and stress.  We’re doing what we can to prepare for things should I go bye-bye anytime soon, but it’s not easy given our circumstances – we’re a same-sex couple and so don’t get any consideration from the state, and the stress and worry over ensuring he’ll be taken care of if something happens to me is something I’d certainly rather not have to deal with given everything else.  You can’t take anything for granted in our situation, and I probably spend as much time dealing with insurers and estate folk to make sure everything is lined up there as I do with doctors.  To bad paperwork isn’t a cure.  All the medical appointments are kind of a pain in the butt, too.  It can be a bit difficult balancing work, personal life, doctors appointments, treatments, paperwork and preparations.  I don’t have much in the way of free time.

What stresses me out the most and probably causes me more grief than anything else in all of this?  My dogs.  And that probably sounds kind of nuts.  But I know people can at least comprehend what is going on and what has happened to me once it does.  But, funny enough, I probably spend more time thinking about them and how they’ll be in all of this than myself or anyone else.  I’ve never once cried during this whole process as a result of diagnoses or discussions or revealing my condition to loved ones; the one thing that’s brought me to tears, and does so regularly, is the thought of my dogs sitting around and wondering what might have happened to me, where I went, and whether I’ll come back home at some point.  I know they’re resilient and adapt easy, and given the lifespan of most dogs there is still a reasonable chance I’ll outlast them.  But, out of all I find myself having to deal with, that honestly gets to me the most.  Part of the process of making arrangements and ensuring my assets and such are all in order for my partner and family has involved also creating a trust for them. 

When I say I don’t worry much about myself it’s not to try and put forth this image of confidence and strength.  In fact, at times it’s bothered me how little I stress over my condition itself.  The fact that I seem the least bothered by it of all that are aware probably bothers those close to me the most.  Sometimes they’ll interpret my lack of outward anxiety as denial.  People almost expect you to be moping around, feeling sorry for yourself.  I’ve not fought those feelings off!  I just haven’t really found myself feeling them yet!  So when people ask how I’m doing and I confidently and honestly respond that I’m doing quite well, they won’t let it go.  “Are you sure?  Really?  Do you need to talk?”.  That kind of bothers me, but I’m also aware they’re not asking these things to bug me and are doing so out of genuine caring.  I just don’t much care for thinking others are constantly feeling sorry for me or expecting me to break down at any moment.  And certain symptoms do become more and more apparent or uncomfortable.  It’s safe to say I “feel off” more often than not, there are complications from this and that, and side effects to be dealt with. I’d much rather do without all that stuff.  But there’s not much to be done about it.

I’m in my mid-30s now.  There’s a decent chance (worth betting on, actually) I’ll get in to my 40s.  It’s even not entirely unlikely I’ll make it in to my 50s, but at that point we’re getting in to some extremely far out odds.  One the scale of things, though, to have 5 or possibly 10 years to look forward to isn’t that bad a diagnosis.  It does give me time to do some cool things, still, and quite enjoy life – which I honestly do!  At the very least I now spend more time with family than in years past, and my partner and I hang out, go out, travel and have fun more than before.  And I’m doing a pretty damn good job of knocking out my bucket list:

  1. Spend as much time as possible with my dogs

It’s hard to not still enjoy life when their looks and antics practically force you to smile and have fun.
– Anonymous

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