No apologies for the length of this post. In accordance with my mission/goals here, I need to get this stuff out of my head.
Yesterday started reasonably well. I arrived at the hospital early and low and behold they called me in 1/2 an hour early - apparently everything was going better than planned in the endoscopy unit.
First sign of the things to come was that as part of the informed consent process (normally where they tell you about risks, etc and you sign their piece of paper) they require me to watch a video of what they're going to do to me. Sorry, but that just seems plain scare tactics. If I wasn't so committed to hitting my old mate TC (tonsil cancer - figured by making it more animate, easier to focus on punching its lights out) out of the park, I'd have said no thanks and walked out. Again, I was too honest for my own good. They were a tad flustered and had me on the table ready to go and I (now) stupidly asked about my informed consent. They obliged by showing me - and everyone else in the waiting room - the aforementioned video.
As an aside, you'll be pleased to know it isn't only us mere mortals that get annoyed with PCs. They had this video on a pc compatible file, but couldn't find it. Then when they did find it, the sound clapped out. Other files of other procedures worked fine, but this one didn't - another warning sign.
Anyhow, next piece of stress. They will sedate me and I'll probably hear them talking to me during the procedure. Beg your pardon? Guys, you need to knock me out, my gag reflex is now legendary and it will make your mission impossible to achieve. (Like the movie link? although for my money the TV series was a lot better). Mr Stein thinks they may have underestimated the amount of sedation required for a lad my size and promises to remedy it. End result, I don't remember a thing. One more victory for the not-so-little guy and an instant like for the guy. I did ask if there was a choice to be had as to what side this thing was going to be fitted, surprisingly the choices were rather limited to 1 - central and about one hand width above my belly button.
A slight break here. Even sitting here typing this masterpiece is bloody painful - you'll hopefully understand why when I come to the side effects bit shortly.
Have no idea what time I woke up, but there was a nice young nurse by the name of Summer waiting to escort me up to the medical ward. Due to a shortage of porters at that time, my journey also involved a trainee nurse who was working in endoscopy.
At this time, my stomach is absolutely tight with pain. Know that might sound strange, but is best way of describing it. It felt really bloated and hard and the pain was something I'd never felt before - easily surpassing the tonsil biopsy and loss of 5 teeth. Sure as hell not thinking about my jaw any more. Even with this level of pain, what was worrying more was this sharp,burning pain across my shoulders. Seems (here is the side-effect bit) that when they're making the hole in me, they deliberately (?) let air in and this air likes to settle around your shoulders and provide hitherto unimagined levels of pain for a couple of days or so. That wasn't in the video and nobody mentioned it either.
For those who haven't taken the time to google gastric peg, here is the abridged version. Process involves shoving a scope down your throat and into your stomach (they spray the back of your throat to numb it - tastes terrible, but does work). This scope has a light on it, so they press on your stomach to see where the light is and use that as a guide for cutting through and inserting the peg. Peg is held in place on the inside by a balloon and the visible/external "hardware" consists of a flange type arrangement (that you need to rotate 360 degrees daily), some tube, a clamp to stem the flow and a nice little Y joint that has one flange named "flush" and the other "feed" through which I'll get to do the business. Yep, I get to do it.
Practicality time here - no way will there be anything other than loose fitting shirts worn for the next little while. There is no way you could possibly call this arrangement discreet. I've also been giving some thought as to the issues wearing a seat belt will pose. In the Vette, shouldn't be too bad as the belt goes left to right and above the peg. The HSV will be another issue and may require a small pillow for "protection".
So, I'm now in the medical ward feeling like death warmed up. I'm in a 4 bed room and it's me, two guys and a Maori lady. At this point, I'm going to smash your illusions - my first night in a hospital was anything but enjoyable. The staff were brilliant, don't get me wrong (two different nurses throughout the night - first one was a tad grumpy, but 2nd one was a little honey), but with being woken every 3-4 hours for blood pressure and blood sugar testing (meant I was eating ice cream at 1am to try and stabilise that), the lady deciding she couldn't sleep so turning on her TV at volumes that showed no concern for those of us trying to sleep and the coup de grace being that the tests for the other inmates were at different times to each other, so you had 4 regular interruptions just for the tests. The lady also failed to grasp that she wouldn't disturb us as much if she spoke in hushed tones. One thing you don't need to hear in the middle of the night in full voice is "I've messed myself".
The blood sugar tests were somewhat amusing. The hospital has embraced my apparent type 2 diabetes status, yet everyone else is happy to just let it ride in light of everything else. As you'll have read above, despite not actually eating any food - bar jelly and ice cream for dinner (kindly fed to me by Ruth because I couldn't even hold the spoon due to the shoulder pain) - my sugar levels did actually spike, so this the 1am feed.
At some stage yesterday afternoon/evening, the nurse flushed the peg, fed me through the peg and then flushed it again. Ruth watched this, I tried to deal with the pain.
Diversion again - despite my efforts to minimise use of drugs to manage various pain, I'm now embracing everything they offer me. I now accept that if they put in place a pain control regime, ultimately it is better for me than admitting I need some help after it has taken hold and it then taking 2-3 times as long to get some relief actually working. Morphine elixir rocks! Shame they didn't give me some to bring home.
One battle last night was finding a position that minimised the discomfort. We finally found a reasonably acceptable spot, ruined by a need for me to go to the loo. Now at this stage I'm feeling really bloated and hoping a good burp and/or fart or two will alleviate some of the pain. Not prepared to risk any unplanned accidents, seems a trip to the loo is putting safety first. I'll not go into details, but even that wasn't a simple process and once more highlighted how dependent I'm becoming on others.
Trying to stand after getting out of bed to go to the loo resulted in a bout of nausea, hot and cold sweats and that unbelievable pain in my shoulders. For some reason, I was back in bed pretty quick with some drugs going in my cannula. About 1/2 an hour later and with the aid of a walking frame, my loo trip resumed.
Having survived the night from hell, shift change sees Wendy come on as my nurse. What a wonderful lady - credit to the profession. During the course of the day she makes me do the flush/feed/flush myself and delivers an emergency kit for in case the peg falls out. Seems the hole will close itself up in 2-3 hours and I'm meant to insert this temporary tube 10 cm into my stomach to prevent that. Now, it seems to me it will take a whole lot less time than 2 hours to call an ambulance and get them to sort it - seems a totally more acceptable solution to me. Anyway, seems I've now got to carry this kit with me like a safety blanket.
Also found out that the stuff they're "feeding" me with is a supplement, not a meal replacement. If/when the need arises to utilise the peg in earnest, I'll be attached to a drip stand that will have a fair dinkum bag of nutrients attached. In the meantime, I need to flush/feed/flush once a day for the next week or so (and rotate the flange thingy daily). I've come home with a stock of syringes (flush is 50ml, feed is 200ml, syringe is 50ml), "food" and all sorts of other stuff. Ironically, the" food" is flavoured, but that is of course lost irrelevant as it is going through the peg. The peg comes with it's own "user manual" and despite it being a rather daunting thickness, the English part is only about 6 pages long.
During the downtime, had a visit from Paul the dietitian who explained the peg deal some more and I made acquaintances with my fellow inmates - Ben and Jim and I had a fair old chat and exchanged war stories.
Some final instructions from Wendy and I'm clear to go home - yippee, the female inmate had messed herself twice more since breakfast, so wasn't keen on being there for the threepeat.
Now Ruth had been with me all day and our plan was for her to bring me home, but the high level of discomfort I was (and still am) feeling meant that getting in to her FTO wasn't really an option. So, call to my main Taxi - Chris - and that is a problem ticked off.
Another little bravado factlet. While I was waiting, decided to take a walk around the ward. Well, made it about 3 steps outside the room and harsh reality set in that this was a pretty bloody painful exercise. Had intended to stop at Harvey Normans on way home to get new cordless phone, but anything but a direct trip home was now off the agenda.
Fortunately, Wendy organised a porter to take me down to the car and I didn't care how "sad" it might have looked, I was thankful for it.
Chris duly delivered me home, Ruth went and got another prescription for painkillers filled and I settled in on the couch. Found an acceptable position quite quickly and just as quickly, Mindy & Dexter decided to come and welcome me home.
Since getting home, I've overcome dropping my cell phone on the floor - in case you hadn't guessed, bending over/down is off the activity list currently. You'd be proud of my ingenuity involving an umbrella to get it up off the floor. Ruth has been and got me some tea (ssshh KFC - it was gooood) and she has also fed the cats (another one of those off limits bending activities) and will come back in the morning to do that again.
I've also been ingenious again in getting hold of the stereo remote from a drawer in the rather low coffee table to turn off the alarm in the morning and have managed to get myself into my pyjamas and get down into the office to write this. Every so often, I'll move suddenly or breathe funny and I'm aware the drugs taken 90 minutes or so ago have only taken the edge off things.
So, there it is, the final procedure required before the full blown treatment starts is now behind me, sort of.
What else is in my medical diary? Well, Matthew has confirmed the kidney tests will be Tuesday at 9am, Helen from Community Oncology support is coming to see me at noon tomorrow and I have my follow-up with Mr Patel on Wednesday morning. I can expect to hear from the community nurses in next few days as they'll come and check on Jake (jake-the-peg haha) on a routine basis.
Thanks to everyone who has helped me out and/or cheered me up (nice text Phil, still waiting for the hookers) over the last couple of days.
I really hope I feel better tomorrow.
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