This thing was a trip. And never in a good way. It is molded to you and literally bolts you down to a table. The idea is NO moment so the targeted radiation will only destroy what is required. It is so tight that nothing and I mean nothing moves. I have become a little claustrophobic from IMRs in the last few years. Too many trips through that tunnel while in serious pain was my thought.
The mask by itself would have been reasonably tolerable. But they didn't stop there. That Popsicle stick coming out of my mouth is attached to a foam insert literally the size of a fudgesicle. Again the idea is to keep your tongue in the same position for every dose of radiation. Try breathing with a fudgesicle in your mouth and you hands held down?!
I was their first patient (new hospital) to custom cut their own mask. I literally couldn't swallow in this thing. No wonder it made me so claustrophobic. So I cut out a section of the neck till I could. Finding out I really was claustrophobic gave me reason to cut out eye holes as well which helped and a bigger nose opening and mouth slot. The staff was amazing for the most part. But there is no question none of them have every been bolted to a table. I only freaked once on a really bad day. But made my point and people were way more attentive after that. Even just a minute or tow less out of the mask was a HUGE stress relief mid treatment. I did this guy every day 5 days a week for 7 weeks. Doesn't seem like much time when I write it down now or when I started. Seems like an eternity now..
Any way this guy set me off every time I put it on. I first tried doing it without meds. That happened once. So I would do a Valium before the trip into the hospital every day. Eventually I was able to do it with out drugs. Took me a few weeks and it was NEVER easy. If I was really sick I couldn't muster the control needed to get it done (it was only 20 minutes or less being bolted to the table) .
As I lost weight and my hair the mask got looser thankfully. Then they started talking about remolding it. Making it tighter.... I panicked and decided to figure out a way to fool them...so I found an index in the mask and stayed there without moving a mm every day during treatment. Not sure if it worked but they didn't remold the mask thankfully. It was something I continued to worry about until finally I was done and got to throw the damn thing away.
I had my last radiation appointment on a Monday. By this time I was really sick. Stay in bed all day puking sick. My throat was really painful. But the weekend recovery from the radiation burn made it bearable. I could literally taste he burnt tissue in my throat by this time and I had stopped eating or drinking. pretty much. Most of what I was getting now was via IV. I 'd have to go back and look at when TPN started but it was around the end of rad. Actually it was earlier as TPN started the end of Nov. Last Rad was Dec 3. Last Chemo and first day of TPN was Nov 28. TPN is "Total Patient Nutrition". That is where you get fed through a IV tube in your chest and you are get ALL your food and water through a tube. At the cost of $1000 a day! I would eventually be on TPN for 6 weeks. You loose the ability to swallow and take a shit in the process.
Anyway I skipped the last Monday. I knew another dose of rad on the Monday would add at least another full week to my eventual recovery so I blew it off. The rad doc eventually agreed after the fact but he wasn't happy. As matter of fact neither my oncologist or my radiologist were "happy" with me by the end. Fuck 'um they didn't have to live through it, I did..
No love lost for either of them. I never felt we worked as a team, which eventually pretty much pissed me off. That feeling hasn't changed. Tracy (my lovely wife and care giver) has a different version of that story and is likely the more perceptive and factual one. But she isn't writing this I am :) Bottom line...the bed side manner for my two primary oncology staff could have been a LOT better.
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