[johnpowell]

When I was towards the end of mouth/neck radiation I wasn't able to swallow anything, even water, for about a month.

So I was just using TwoCal® HN in my feeding tube. I was using six cans a day which is about 3K calories. I still lost 35 pounds. I ended up under 100 pounds. I am 6' tall. I was never a big guy. But I got bad.. I have a picture.

https://i.imgur.com/UQVgJIP.jpg

I don't get out in the sun much. That brown around my neck is burns from the radiation. It has been a year and that burn is still there. If anyone wants to know what it is like to have a sunburn inside your mouth feel free to ask.

But I hit a point where every joint in my legs and fingers ached and I didn't want to get out of bed because it hurt so much. I hate milk, I never put it in my mouth. But I started putting the fattiest milk as possible the feeding tube. In a week my aches went away.

[johnpowell]

Not sure if this is bad form to respond to my own comment here. But my comments here have probably been massively depressing. I have a positive one.

There was a radiation tech, a older gentleman. He noticed that my belt slowly was failing. So one day he told me to give him my belt while I was in the machine. He kept a leather punch in the booth and put in more holes in my belt while I was getting radiated.

It is the small things.

[CodiePetersen]

Hey John. I know how you feel a bit. Dont worry about people thinking its depressing. It's your struggle and your story and you can tell it how ever you want. I remember tiny things like being able to tell my story helped me when I was diagnosed with a brain tumor.

People may not understand what milk has to really do with your situation but it is those tiny things that make the most profound impacts I'd say. I still look at the tiny needle scars and that reminds me more than the actual scar on my head.

So feel free man. I found being able to talk about it openly helped me deal with it A LOT MORE than anything else.

[YeGoblynQueenne]

Hi. Once you're ready to transition to solids, try making (or asking someone to make you!) junket. In short, it's a milk-based dessert that used to be consumed as baby food. It's basically sweet curd with (fragrant) spices.

Here's a quick recipe:

http://oldrecipebook.com/junketrennetrecipes.shtml

Here's one with rather more detail:

https://theelliotthomestead.com/2016/04/junket/

And here's one in video:

https://www.youtube.com/watch?v=6n9bjLhq2k4

I hope you get to repay your woodworking debt in good time :)

[thaumasiotes]

> But I started putting the fattiest milk as possible the feeding tube.

I'm curious whether this was just whole milk (~3.5% fat), or if you went up to fat-added milks like half-and-half (~10%) or whipping cream (40-50%).

[johnpowell]

Whole milk. I tried the heavier dairy products but they slowed things to a crawl.

The feeding tube is actually very narrow. I tried blending spinach and other assorted vegetables and it clogged it.

You have to do a intro with a person before they install it. They showed me a example of what the tube would be. He showed me what was essentially a half inch vinyl tube with one of those locking clamps you have to squeeze down to close.

It was huge and I was terrified. I just didn't understand how I would be able to sleep with it in. I thought I could blitz a steak and put it in the tube.

But the tube is tiny. After a few weeks you barely notice it. The entire concept of it is terrifying. I couldn't look at mine for a week. That isn't a joke. The concept just flipped me out.

But I thought it was weird that every doctor through my path mentioned that they could take it out in seconds if I didn't like it. Not a big deal, we just pop it out and put on a band-aid. No big deal. ENT person, Nutritionist, Radiologist, Oncologist, Oral Surgeon. It was almost scripted. Everyone said the same thing.

Now I understand. I would have died without it. The Radiologist said as much the first time I met him. "25% of the people with what you have don't get the tube, most of those people are dead now"... I thought that was hyperbole. It wasn't.

I think I had the worst schedule ever. My first treatment of radiation was at 8am. Surgery to put in the feeding tube at 9:30. First chemo at 1PM. It is hard to top that Monday. But I went in for the feeding tube and was completely knocked out. When I woke up they said they couldn't do it. So plan B was needed. From what I gather my stomach rides high so they ended up needing to push my stomach down and then stitching my stomach lower to hold it in place. This was incredibly painful. I did learn that OXY is actually a fairly weak narcotic compared to what they can give you. This dude got high.

Well fuck, I typed a lot but answered your query in the first sentence. I think I am just trying to get my story out before I turn to dust.

[austhrow743]

Could you talk more on how learning that not having the tube in would kill you made you understand why all of the medical professionals were offering to remove it?

[johnpowell]

For sure.

When I first saw the oncologist he made me meet with a lady that walked me through chemo. She laid out that explicitly that I am such a slender guy that I will die without the tube. And my kidneys will fail since I will probably not be able to get down water. I would later learn (PET scan) that I was born with one kidney.

I think they knew that letting me know that they could easily remove it would increase the odds that I would get it put in. To make it seem like a trivial thing. If you don't like it we can just pop it out and things go back to normal. Easy. Might as well have it put in, why not? Everyone had the same spiel.

And they were right. It is easy to remove. I accidentally removed it myself one morning. And I lost my shit. I shoved it back in and my stomach contents started pouring all over the carpet since the other end was open. I was panicked.

It took about five minutes to shove back in and it required a significant amount of force. The thing is the hole closes up fast. They said if it comes it you have a hour to get to the ER before we have to start from scratch. And I don't drive. And nobody that drives was home. And I live in the burbs`. So I had to just get it back in there.

Fun fact.. Is you toss some lube on the tube it goes right in. I now keep KY in the bathroom drawer. But that was terrifying.. That is how I eat. And getting the it put in was pretty fucking painful. I had to resolve to situation.

[austhrow743]

Ah I didn't realise it was something people exercised choice over and needed cajoling in to.

[johnpowell]

I had inquired into why people refuse and the radiologist pretty much said that religion seems to be a major factor.

He also asked me about the "gun situation" where I live. We have a lot of guns but they are locked in a safe. They are for turning animals into jerky. We don't sleep with guns under pillows. We don't even lock our doors.

But he was concerned about my access to suicide machines. Five weeks later I would understand his question.

[pjc50]

Informed consent is a very important part of medical care, and patients should exercise choice wherever possible.

[thaumasiotes]

I imagine the idea is that, by emphasizing how easy it is to change your mind after the tube is inserted, you can more easily persuade the patient to allow you to put the tube in in the first place.

[johnpowell]

Absolutely. That was the goal. If I didn't like it we could pop it out in a minute and it won't hurt. So no harm in having it done.

I am glad they were aggressive. I would have died a painful death without it.

When the ENT guy said I would probably need a feeding tube I was thinking a thing that would go down my throat. And I was not thrilled about that. Right after the ENT guy I had to see the Radiologist and he was banging on more about the tube.

I still thought it was a down the throat tube. But my sister had google imaged searched g-tubes and showed me on the ride home. Tube in the stomach. No big deal. As long as it wasn't a tube down my throat. Horrible.. But significantly less bad than I had imagined.

I would be dead without the tube. So if anyone else has the same problem you should really get it.

I have to get the tube replaced every ~4 months. Last time I talked to a guy that used to work as a radiation tech at a different hospital. He said they just didn't do radiation on neck people unless they get the tube. Since they will die anyway and it is expensive.

[nullc]

Because if it wasn't trivial to get rid of that would be a big disincentive to start with it in the first place?

[hansthehorse]

I had/have mouth neck cancer. The mouth part was at the very base of my tongue where it enters the throat. The hole they dug via robotic surgery on my tongue is 1x1x.5 I was told half of all people who undergo this end up with a permanent feeding tube so I should try my best to keep eating. Started radiation 2 weeks after surgery while I still couldn't swallow my spit. I ended up mostly surviving on the softest and most calorie dense concoction I could think of - yogurt with both caramel ice cream sauce and maple syrup mixed in. After 6 months I had learned both what pain really was and what morphine withdrawal meant in real terms. I've had 3 clean PET scans since but I sometimes lie awake wondering if I can force myself to go through it again if the test comes back positive. The 24/7 pain of that 6 month stretch will change the way you look at things in your life.

[johnpowell]

Wowsa.. You had it worse.

I had a "swallowing coach" who was a doppelganger for David Mitchell. The WILTY guy. The best posh comedian. And yes, a swallowing coach is a real thing. I was charged 600 a hour for him to watch me eat pudding and be taught how to gargle water. This was actually really important. The radiation killed my ability to swallow. Every muscle in my neck died.I knew I was fucked when I couldn't swallow a pill.

Funny thing is I had to use the blue box (Kraft Dinner, Mac and Cheese) to get my throat working again. I started with noodles that were cooked for 15 minutes and were mush. And I slowly worked my way to Al dente. To get my throat to open up again. I was threatened with them putting a balloon down my throat and inflating and deflating it over and over and over again to work out my neck muscles enough to swallow. I hate the endoscope so the balloon is my worst nightmare. My muse. But the blue box worked. A have to add a lot of milk since I don't really produce saliva anymore. Permanent dry-mouth has been the worst thing about my year of horror.

This is why I quit my computer job and started doing woodworking for a living. I make less but actually enjoy woodworking. When I was deep in radiation and chemo I got a bunch of credit cards and outfitted a nice workshop. I was pretty sure I wouldn't have to actually pay back the debt, because I would be dead. But I am still here. So fuck..

[johnpowell]

That is the fucked thing about cancer. It is never over. Even if you come up clean in a PET it is always still there. Lingering. Forever..

The mental game after you recover is nearly as bad as the actual treatment. When I was between scans I did fuck-all because I could be dead in a month so I will just watch reruns of "Come Dine With Me".

[PebblesRox]

Thank you for sharing your experience with us.

This xkcd has a poignant illustration of the uncertainty: https://xkcd.com/931/