Sit on it, Potsie

There are better days and there are worse days. The better days are becoming far and few apart. They are the ones when I get halfway through the day and realize I haven't taken any pain meds. They are the ones where my mouth isn't completely gummed up. They are the ones when my mouth and throat are not raw. They are the ones when a sip of water actually provides some relief from the dryness.

Oddly, they appear to happen after I have the worst sleep. Awake every 30 minutes or so... an hour at a time is a blessing.

Undoubtedly, the next night's snooze-fest is better. Sleeping for a couple of hours before waking up, perhaps to pee or have a drink, but rapidly back to the sleep of demented, and usually forgettable, dreams.

But with the dawn comes all the garbage again, with a vengeance.

The better days seem to be about once a week. The worse days... 2-3 times a week. The others just fall into the void between the two. Manageable but still far from stellar.

Over the past week, I have continuously eliminated things I can actually eat. The list is quite small. Occasionally eggs, but I don't know how long that will last. It is becoming more apparent that my diet is going to consist of meal replacement drinks. And even those are a chore.

They generally have little taste, to me, which may actually be a blessing in disguise, and as they are thicker, they have a tendency to gum up pretty quickly. Hence, they are shooters. 235 ml shooters.

And yes, I've tried the watery ones and that was one of the most vile things I've ever intentionally put in my mouth... and that's saying something.

I have no choice but to make this work as the alternative is not something I want to contemplate.

The alternative? A feeding tube. To wit, a rubber hose crammed up my snot-pipe and down into my gullet whereby some sadistic swine would presumably pump high-calorie, vitamin rich swill.

And to be fair, I don't even know how this world work. Would I need to be hospitalized? That's not an option. I have dogs to look after and I need to work.

Is there a portable version? Not sure I relish the idea of parading around town with a tube up my nose, scaring small children. Not that I'm opposed to scaring small children. On the contrary, I do get some delight out of it. But I would prefer the manner in which I scared to be more deliberate.

Would it require going somewhere a coupla times a day and having the tube inserted, being "fed," and the tube removed until next time? I can't help thinking that would get old pretty damn quickly.

Moving on...

I wrote that 3 weeks ago. Things have changed. There are no good days anymore. There are better days and worse days. The better days are considerably worse than they were 3 weeks ago. And the worse days are just that. Sleeping is an exercise in futility. Random, circular dreams that I can't seem to shake. Looking at the clock and being happy it's 45 minutes later than last time I looked. That counts as a snooze. Now Let's do it again.

It is getting increasingly difficult to not feel sorry for myself. I try not to whine to anyone except myself. The dogs seem to sense it as they go along with their routines.

It's always been the case.

I've been telling myself I need to write this, But I either simply don't have the energy or the day just slips past me. I had things I wanted to write about. A coupla funny anecdotes. Even some gross stuff. I was planning on getting to the majority of them, but as you will see, one topic dominated.

Let's start with the whole feeding tube thing.

It was becoming evident that I couldn't eat solid food. At all. Nothing.

I gotta tell you, that realisation kinda sucks.

I find myself seeing images of food people made on social media or someone enjoying a simple sandwich and I don't find myself wistfully longing for the day that I too will be able enjoy a simple repast.

On the contrary.

I just want to punch them in the fucking face.

And I DGAF if that's an irrational feeling. It's mine and I will embrace it. Nurture it until it leads to near homicidal levels.

"Mr. Cashmore, why did you beat the defendant nearly to death with a pimento loaf (IYKYK)?"

"He had a sandwich, your honour."

I might need a really good lawyer.

Regardless, being limited to "meal replacement drinks," that, I should point out, mostly taste like crap, is not a pleasant turn of events.

So, I decided the best course of action would be to try the feeding tube.

Now, this should be prefaced by the fact that I'm probably not in the right frame of mind to be making decisions like this.

Regardless, my medical team thought this would a good thing and make it easier for me to get the nutrition I needed to, y'know, stay alive.

So I trotted on down there and, not without a bit of trepidation, I prepared myself to get a rubber hose shoved up my nose.

I was not looking forward to this. The last time I had a tube up my nose (not something I ever thought I'd say) and into my gullet was after my surgery. I was asleep when it was inserted, which, if we're being honest, is the best way to have a tube shoved up you nose.

I get there and we prepare to insert the device. It was explained to me a couple of days earlier when it was brought up as a possibility. The tube is a fair bit thinner than the one I had earlier, which I might add, I really didn't notice.

I should also say that the only reason I was doing this was to make my life a little easier.

We get started and immediately I was second-guessing my decision. Having a 2 foot long hose, no matter how thin, up your nose and into your stomach is not a pleasant experience.

Quite on the contrary. You need to cough. Your eyes water. You pray to all that is holy to take you now.

Once it was in I was sent up to x-ray for the quickest x-ray I've ever had. The purpose of said x-ray is to ensure the placement is correct. Apparently they are quite precise as to how far in it goes. The tube itself has gradient markings in the millimetres. These guys are not fooling around.

Off I go back to the tubing room. A few minutes later I'm told we need a slight repositioning as it's a coupla millimetres too far in.

OK, not a big deal.

Wrong.

Even an adjustment of 2 millimetres is excruciating. Well, not really, but it seems like it at the time. It is really annoying.

Once fitted, it is taped into place.

Oh, I forgot. It was secured the first time and that had to be removed.

Now, they use this tape that does not like to be removed. So much so, I becomes a battle with the nurse and the tape. On the tube. That's shoved up my nose.

Every movement as she wrestled with the tape served to remind me that I had a tube up my nose.

As the nurse got the tape into a half-nelson, she reach for a pair of rather dangerous looking scissors.

As she snipped away at the tape, no where successfully enough for my liking, all I could do was gag and envision the scissors slipping and getting shoved in my eye. Frankly, I don't think this was an unreasonable fear considering how my year has been going.

Finally the tape was defeated and my body parts were intact. The minor adjustment was made and the tape was once again applied.

However, this time the tape was on in such a way as to be uncomfortable. I mentioned this and the nurse said should fix that which led to round two of nurse vs tape.

Picture of the artist with a tube up his nose

Once re-secured, she set about explaining how I would actually operate this thing.

There is a bag into which a meal replacement is poured. The bag is then hooked into one of the multi-use hat stands you see all over hospitals.

Then you sit. You sit while it slowly goes into your stomach. This takes anywhere between 30 & 45 minutes.

There is also an in-depth cleaning and sanitising procedure both before and after feeding time.

It was becoming clear to me that is was not designed to save me time.

Nor comfort. I mentioned that I was acutely aware that something was in the back of my throat. Not unlike the feeling when a pill you took hasn't gone all the way down.

I was surprised by this because, as I believed I mentioned, I didn't even notice the thicker tube in the hospital.

It was explained to me that this was most likely a result of the damage done to my throat from the radiation and I would get used to it (I wouldn't).

I had my feeding and was sent on my way.

Now I don't know about you, but I find it impossible not to feel self-conscious when walking around with a tube up your nose. I knew everyone was looking at me even as they tried not to. It really does make you feel like a bit of a freak. An invalid.

I went through the rest of my day and was already having thoughts of ripping this thing out. I decided to see how it was in the morning.

I had also started to think about the logistics of feeding. Where could I hang the bag at home? At work? And if I managed 4 feedings a day and assuming each feeding and clean-up took an hour whereby I was mostly locked into one place, how would I realistically manage that.

The next morning the answer was clear. I wouldn't. This rubber fucker was coming out.

When I was back at the cancer centre, less that 24 hours since it had gone in, I informed them I wanted it gone.

I was slightly surprised that there was no argument. Apparently I pretty much get what I want.

The nurse once again pulled the tape off my nose. There was no need to take it off the tube this time as, apparently, they do not recycle.

You're getting grossed out just imagining that, aren't you?

As she got ready to remove the tube, both hands firmly grasping it and a foot planted on my chest for leverage, she hauled on it with a vengeance. A motion not unlike she was pulling back on a bull whip just before landing a vicious and accurate lash.

My eyes watered and I coughed. I couldn't help thinking this is kinda what it's like on TV.

OK, that's done. Now all I have to do is hold my nose (literally) and suck down 4 or so of these drinks each day. Even with the gacking, it's only about 5 minutes a shot and has none of the added maintenance or discomfort that comes with the tube.

The stuff they gave me to use with the feeding tube only comes in a rather disgusting variation of vanilla. I don't mind vanilla but there is good vanilla and there is bad vanilla. This is bad vanilla.

Which reminds me of a story from many years ago. I have an old friend whose adventureness when it comes to the culinary work is somewhat.. lacking. Fair enough. He knows what he likes and what he doesn't.

Several of us somehow managed to get on the topic of favourite flavour of ice cream. We all had our preferences but when it came to his turn, he said "vanilla."

Of course we laughed at him, as we were wont to do.

Comments about how boring he must be, (which really was far from the truth in most things) how he must love sitting around with the family sized tub of mayonnaise and volume 5 of Best Golf Jokes.

After enduring this a little bit he suddenly and loudly burst out with "Vanilla's a flavour!"

Now, while accurate, it simply caused us to laugh all the more and watch him slump into a grumpy little mood, which we always enjoyed.

But once again I digress.

As it turns out, there is an even higher calorie version. The downside is I have to buy this myself. Another up-side is they aren't completely disgusting. The chocolate is passable as is the strawberry. It also has the distinction of being the best tasting strawberry of the lot. Not a very high bar.

There are a coupla things I'd like to mention before signing off.

The more astute of you may have noticed the facial hair change in the last photo of me.

Unfortunately, I had no option as it was going away on its own. It came on quickly and within a matter of days, I could literally pull out chunks of my beard.

Now, I knew this was a possibility but even so, I was not prepared for how rapidly it came upon me. My moustache should (we hope) remain largely unscathed.

Anyway, the long and the short of it is I trimmed the rest so I don't look anymore ridiculous that usual. I am not allowed to shave with a blade because of how it would irritate my already irritated skin (more on that later).

The other was chemo. It was cancelled last week as my weekly blood work showed my platelets were low. We will see if they get better and if, so, we'll do a 6th chemo. It's funny, no one asked me about chemo last week as they usually do.

We have done 5 which, apparently, is the magical number. Any more is a bonus.

1 week of radiation left. 5 more zaps. Then we move into a coupla weeks where things will probably continue to get worse. But the light at the end of the tunnel is that after that, my body should start to heal from the side effects. The downside is that it probably will get worse and I am not looking forward to that. 

Some effects may be longer lasting than others. I may never be able grow a beard again. But my taste should start to resume. I should be able eat real food and thereby my desire to punch people in the face may go down. I'm not betting on this one.

All in all, things could be a lot worse and there have been a couple of highlights to brighten my mood.

Like the Oilers going out in round 1, for example. Quack.

Anyway, time to get this edited and posted.

As always, if you see something we missed, please let me know. Also, if you have any questions, please ask. I will try to get to them in the next post, which I promise there will not be a 3 week gap.

I leave you with a question.

What is a chemo dump?

All good things.

S