Lytha's Blog

KÄSEBRÖTCHEN, not KÄSEBROT, but yeah! Well, the cheese bun isn't going to work for a while, I guess.

I did some experiments with the soup here (I threw in some croutons, waited until they were all soggy and wet, and could swallow them), but when I tried a mashed potato with lots of sauce later, it just didn't work (2 sips of water after each bite, and the potato was still clinging to the tongue and throat). I guess there would've needed to be more sauce than potato. A lot more sauce than potato. Basically a sauce-soup with some potato.

According to the letter that they gave me, I am supposed to feed through the stomach tube for 1-2 more weeks anyway; but I am so going to ignore that. I've had more than enough diarrhoa by now, and I blame the liquid goo... at least for some of it. The antibiotics would've been the other reason.



Well.

My parents and I went into a nice cozy restaurant yesterday before we went for the cats. I knew that this restaurant offers mashed potatoes and sauces, you see. (Luckily, they also offered some vanilla ice when I realized that it just didn't work). They also offer lots of other EXTREMELY yummy stuff there - a first time visitor usually loads up lots of yummies onto the first plate and THEN realizes that there's a salad bar with about 50 different types of salad, too. That leads to an expensive bill and to more food on the table than the first time visitor can actually eat; but also to the desire to return soon to try out more of the stuff.

Anyway... it was interesting to walk around in town yesterday. I'll have to work on some of my manners, like hiding the stomach tube in my pants instead of just letting it swing freely. Or like not drooling into a hanky too much in public. That worked, mostly. But people did stare quite amusingly.

One lass stared and put her hand to her own throat, as if to ward me off. Another, in the aforementioned restaurant (I was at the table much earlier than my parents had been), initiated a conversation. She knew that this must be a plaster over a tracheatomia, but thought that I had had a nasty accident.

Something nice was to see the effect that a "cripple" like me has when she's saying things like "oi, please don't block the entire path here, guys" to a bunch of 20 y/o lowerclass males. First they turn, ready to be somewhat offensive. Then they stare and say nothing and move to the sides.



Yeah, and the cat recovery? That went particularly bad, actually. Geordi did hide below the bed. Julian, however, did hide in the huge closet below the ascending rooftop at first. My friend had a lot of cardboard boxes and things like that in there, and Julian was hidden behind them all. He basically only left (and very quickly at that) when my father started to help us remove the boxes. Julian was afraid of my father very much, because he doesn't like men very much.

Then he ran towards the living room/kitchen and disappeared into thin air.

For some horrible minutes, I thought he might have managed to climb in desperate panic through that small window and out onto the roof and then down onto the street (dying horribly from the drop), but it turned out that he had found a way into the cupboard with the pans and cooking pots and was hiding behind them.

I could grab him there, pin him down, pick him up, calm him down (he apparently still recognized me, because he would have had half the face of anybody else holding him like that), and stuff him into the transport box.

Removing Geordi from below the bed was a simple matter of inserting a broomstick and moving it around and pulling. He never really perfected the art of assaulting and fencing a broomstick that's trying to pull him out of a hiding place, as Julian is able to do.

Once back home, they knew where they were and expected to be released from the transport box RIGHT NOW. Then Geordi inspected the territory, giving me lots of really insolent and cold stares, while Julian spent some hours below my bed.

I know that Julian left that hidey hole at some time during the night, and I don't know where he's hiding right now. They also came to eat when I gave them food, but Julian was not impressed by the way I smell and sound right now, i.e. he smelled very quickly at my hand, then went for some distance.

Geordi realized that he knows this place indeed, and has slept already in the UFO and done usual activities, like roaming around in the sink while I am sitting on the toilet, rubbing his head and side against mine. He's also saying "meaow!" occasionally, and he walked over me at night. But very carefully, and he did not sleep next to me. Apparently, he was not allowed in the bed of my friend, you see.



Also, dudeeeeeeeees. There's feeling returning into that bodypart just above my left boob. That's definitely good news, meaning that feeling might return into the rest of currently numb body parts (from left upper arm up to the entire left ear, over to the front of the throat and down to the left boob) in a while as well.

It's not all that nice though, because well, there's a massive internal bruise and swelling at that spot, but at least it's not totally numb anymore.


Weight loss during the last 18 days is 7kg, which puts me at a BMI of 20.1 now. I'm going to buy some more cream today, because I'll need a higher BMI to get through the radiation therapy if I don't want to starve.

Oh, it didn't even hit me that you'd use the term brötchen also. We always talked about Käsebrot and Schinkenbrot so I just figured it was a general expression for all kinds of bread! Good to know! ^^

So, cancer brought you a massive number of blog-views, a massive number of blog-replies AND you lost weight!
It's like the magical cure for everything! Well, except for cancer!

And I managed to laugh out loud at your description of "letting it swing freely"!


I know I said it before, but good to hear you getting some of your groove back! Keep on truckin' babes, keep on truckin'!

Geordi just witnessed for the first time in his life how a PEG ( http://en.wikipedia.org/wiki/Percuta...ic_gastrostomy ) is being given the daily cleaning ritual. I have to turn it around clockwise once, pour the content of a 50ml syringe of water or clear tea through it, and then remove the bogeys. I'll do this daily for the next year or so, because that's how long I'll keep the tube.

Geordi sat down. He watched. He stared. I did show him the syringe and he gave it a short sniff before moving away in disgust.

Now he's hiding below the sofa.


I guess it does look gross? I'm really not the right person to judge about that anymore. :)

Anyway, that might explain why that old strange lady who was put into the 3rd bed in my room while I was waiting did act as she did. I had been busy cleaning the PEG when she was being moved into the room, you see. Ever after, she stared at me without blinking or looking away. I know that she was able to understand the nurses and the doctor, and that she could smile (at them), but I was just stared at. Even though I said cheerfully "hello!" a couple of times. She was most likely from the neuropsychiatry or the psychiatry or something, since she seemed somewhat autistic or catatonic or whatever.

My syringe/stomach tube activities had probably grossed her out at the first sight, so she had no smile to spare for me.


Upier:


Käsebrötchen


Käsebrot

You don't have to use all the lettuces and tomatoes and other stuff to get a nice Käsebrötchen that I'd find appetizing right now. Just the bun and some gouda would be awesome.

By the way, I managed to chew a little bit just now. On soggy croutons in a bowl of soup, but that's better than not chewing at all. And I didn't bite my tongue at all.

Julian is really going to be a pain in the butt about this all. I got him out from below the bed, and then he spent the rest of the day on top of the closet. Geordi went to see what's up a couple of times, but left him alone.

So, in the evening, I had enough of this and put a bowl with tuna right under his face. He growled but did eat something. Then he growled some more and left the closet, so I captured him, snuggled a bit with him (the little pest needs to smell like I do, I suppose), put him onto the fridge, from which he escaped quickly to find the bowls of food. He did eat some more, found the cat grass, gave me a really bitter glance and went back below the bed.

Geordi is back to normal, except that I don't like the bump on the back of his head at all. I don't know if it did grow since I last time saw him, but I've seen too many jaw and skull bone cancers in the last 3 weeks to not be afraid now. The problem is that I really can't drag him to a vet rightnow, due to my cripple status.

Also, I am really afraid of his claws in combination with my sutured wounds. I don't want these threads pulled out just yet.

Julian is quite back to normal, I'd say. I catnapped him last night and dragged him into my bed to snuggle, and he didn't claw my face off. Also, later that night, Geordi was lying next to me in bed.

Both seem to think that the PEG is something very frivolous, and I am quite saddened that the PEG means that Geordi refuses to lick my bellybutton clean anymore. That may win the weirdness award of this blog entry, but I really found it cute when he came to do that while I was lying in bed. Now he just stares at the PEG and leaves in a hurry.


These issues aside, I am also pissed off because it looks like I developed an allergy against the antibiotics that I had to take orally (well, PEGgaly) for the last week in hospital. I have plenty of cute red dots over my body now. Good thing that I'll see my physician today anyway, she can give me some antihistaminics then while she's busy staring at me.


By the way, the whole thing is called "pT1, pN1 (1/40, ece+), L0, V0, now R0, malignity G2"

I feel like a wreck. The arm that got the vaccinations yesterday is hurting. The tongue is... well... my tongue. Front left part is feeling awkward, and the threads annoy me. I still can't swallow. I still can't walk my stairs up properly. Talking to a pharmacist while standing exhausts me completely. And I have this diarrhoe thanks to stress, antibiotics and the yucky liquid goo, which is capable of passing through me in a matter of 1-5 hours. My throat is still swollen like mad. My tracheotomy is still open. I've plenty of bruises everywhere thanks to the anti-thrombosis stuff I received in the hospital. My left ear and left shoulder are still totally numb and feel thick. I felt as if I was going to collapse a few times today. Also, it must be >30°C here today, I'm sweating like a pig.

So, what I am going to do now is to feed 1.5 days on clear soup and old white bread (I just put it into the soup and wait until it's liquified), and on tea with honey+salt. At the same time, I insert nice symbiotic bacteriae into my system; hopefully allowing them to re-settle my intestines while the colon is taking a 1.5 day long break.

From Thursday, I intend to try carrot-goo.

Since I'm learning how to swallow at the logopedician, maybe already tomorrow, I'll hopefully be able to somehow consume the carrot-goo, too.

I.e. my topmost priority is now to get rid of the diarrhoa.



Took another paracetamol just now. Really ODing on the stuff, at a rate of 1 pill/day. I'm taking it because of how the vaccinated arm feels like, not because of the ~40cm of fresh scars.




Oh, threads have been removed. I am in theory allowed to shower, if I wouldn't have the horror image in my head of shower water pouring down through the tracheotomy down into my lungs. Yeah yeah, I know that I can just tape it over and replace the plaster afterwards, but today's plaster was done so nicely and well that I don't want to replace it already again. Going to shower tomorrow morning instead.



Also, I've a gross picture for you (there shall be more in a while): My scars (still with the threads and some plasters) last Friday, straight when I was back home. Spoilered because it may be somewhat gross:

Spoiler

There's also still a lot of goo left by other plasters, because I didn't really dare to wash anything between my jaw and my breasts then.



... curious. Even though I feel worse than ever, my face looks almost normal again (by comparison with the last 17 days?) Pale, but not as deformed by the swelling anymore.

Hmmm... morphine would be a reason to die in a hospice, wouldn't it?

Ah well. I guess I can do without somehow too. Lots of people can.

Feeling a little bit better now, I guess it helped that the pain from the vaccinations wandered from the shoulder into the biceps and anti-biceps last night. This means that the pain, while the arm isn't stretched is at a bearable ~3 on the 0-10 pain scale, but at about 8 when stretched.

Also, I did actually consume some extremely mashed apple today (via PEG), plus some clear veggie broth, plus more tea with honey+salt - in other words, I didn't start the process of starving myself to death. Was a close one last night though, I basically only left the bed because I phoned with a *friend* (not a member of my crazy family) and he made me promise.

I just bloody well hope that the nice and symbiotic bacteriae do their job and resettle my colon really bloody fast now and that the pain in the right arm is somewhat gone tomorrow or saturday.

At least, I was down to 1 paracetamol every 10 hours rightnow instead of 1 / every 6-8 hours as yesterday, which is probably a good thing as well.

Going to get some more sleep now, even though the cats won't be amused that I'll oversleep their regular evening meal feeding time.

.. no. Actually, going to get me some clear soup with some noodles now, which I will mash up and try to consume. I might add a little bit of dry and old white bread, too.




If I *could* eat normally, I'd probably go for spaghetti + soy sauce at some time tomorrow, but how the hell should I get that through the PEG? Overcook them, mash them up, add the soy sauce and the water, and inject? OMFG.

This must be some sort of hyperimmunisation. The last vaccination against tetanus was in 2007, so I have no idea why the moron thought I needed it again. She's stealing at least 1 week of reconvalescence from me by doing that, which I would have needed before the ****ing chemo + radiation therapy begins.

So, if I die during these therapies, thanks to the horrible shape I am in now, then I hope that she's sued for malpractice. Maybe I should try to sue that ***** as well in any case.



It also does not help at all that there's this ****ing creep stalking me here at GWO and that the new admin seems to be trigger-happy concerning rights of the users; talking about how she just removed the ability for guest (i.e. the friendly folk from youtube) to read this thread here.

If I were in somewhat better physical shape, i.e. had more arms available to do work with than 0.7 + 0.1, then I'd move off from here right *now*.

So. Antihistaminics helped, and a lot at that: I can actually stretch my right arm for more than about 30° again (without suffering unbearable pain), almost back to 180°, even though I had a natural ~200°. I am ODing on them now, so maybe the right upper arm won't be twice as "thick" as the left one for much longer. I apparently took about 2/3 of the side effects of the vaccinations against pneumococcs with me, without ever having read about them, plus some side effects of the hyperimmunisation that that retard of a physician caused me to have against tetanus. YOU DO NOT VACCINATE AGAINST TETANUS AFTER ONLY 4 GOD DAMN YEARS, *****.

I'll tell her about that in probably just these words (without the cursing) on monday or perhaps on tuesday, depending on how adventurous I might feel on Monday (i.e. capable of walking my staircase twice? Somewhat unlikely, so maybe I should rather go to her on Tuesday, combining it with the tumor control appointment. On Monday evening, I see the logopedician again, and early in the evening at that.)

So, next thing to ponder is the vaccination against flu that she also suggested. I'm thinking that talking about this with someone who actually KNOWS what they're doing is the better course of action than risking another week of being put into a semi-dead state just because the moron physician thinks that it would be advised.

I normally never get a real flu anyway. However, I'll in contact with lots of ill people and people working in medicare this autumn, so the risk is somewhat increased. Without a working immune system (that's what the chemotherapy does), this is trouble.

So, I guess I should phone with the guys at the CIO (centre for integrated oncology) here before I let that crazed physician do any more harm.


I got pushed really badly back thanks to this spontaneous and retarded vaccination event. On wednesday, I was psychologically and physically in a state approximating that of "like each saturday after a surgery which happened on a thursday", with more mobility, and a lot more pressure of having to actually get out of the bed - appointment with the logopedician, you see.

It also did not help that I had followed the advice of the mouth-jaw-face dude that I could shower again. Getting shampoo into the lungs or at least into the trachea meant that I coughed the hole back to 8x10mm from a 6x6mm. He's an idiot. No more showering of that area until the ****ing hole is closed.

Communication issues with the family caused more stress.

The creepy stalking bastard here at GWO and his thread also caused more stress.

It also did not help that I was on PMS right then. I am under normal health in berserker state when I have PMS - add in poor overall health, two horrible surgeries, the PEG, the tongue, the stress, and it's easy to see what I was like.

Basically, I guess I was about to go "boom" on Wednesday evening, when I only somehow managed to creep out of the bed because a friend had made me promise to at least get up and drink one more cup of tea+honey+salt. The alternative (staying there and never getting back up again) seemed like a much easier option.


Yeah. Since then, I have regressed a lot. I only "eat" via PEG anymore and don't do any experiments with swallowing more than water or tea. Pills go in via PEG (which is quite a messy task with some of them, let me tell you that.) No more adventurous ideas about trying out croutons or dreaming of buns with gouda cheese.

I found out on that wednesday night that it helped to stare at photos of salads on wikipedia though, which is probably sounding like I went totally nuts. Erm, but it helped. They looked yummy. At least those without ranch dressing or other "american style" de-evolution.

Thursday came and went and I increased the food input to 3/4 apple, tea+honey+salt, half a bag of soup with some noodles... which I actually did eat instead of PEG. Quite a disgusting goo that was in the mashed up state, but no matter.

I guess because that had been so disgusting, I went back to 100% food per PEG on Friday, increasing it to 1 1/4 apple, 1 carrot, 4 slices of old white toast, tea+honey+salt.

Friday, my sister also came and did some grocery shopping for me and she went to the pharmacist to buy some more bandages, and pills, and the antihistaminics.


So.

Diarrhoe: seems to be somewhat in control now, thanks to the two symbiotic bacteria types that I kept pouring into my system, thanks to tea made from dried blueberries, thanks to some pills that emulate some of the stuff that you find in black tea.

I'll be getting some teabags with Ceylon tea today and add them into the mix.

Food input will remain anti-diarrhoe for another while, i.e. apples, carrots, potatoes, noodles. No creamy soups and especially no liquid goo.


Arm: Still swollen, but the swelling is now half as thick as before. Arm is much more mobile and typing this comment here does not hurt.


Communication issues with family: I talked with them. Apparently, they weren't angry with me at all (which I had anticipated and thus lashed out even harder). I'd say this is solved for now. I hope they travel with my sister for one week to the north of the country, because they wanted to do that last month and delayed it.


Appetite: Well... half an apple now plus 3 slices of old toast. That was the breakfast. I didn't feel like leaving the bed too early.


Grooming status: Wearing pants again. Alright, it's pyjama pants, but better than just the nightshirt. Will "shower" myself tomorrow again.


Swallowing status: I will try some disgusting stuff today because the logopedician recommended it. I don't know how you call it in english, it's like "slightly solidified jelly" and it's green. As for my carrot, apple and potato recipies, I think it's best if I eat them via PEG because then I don't have to taste this high quality cooking style.

Just assaulted a bowl of mashed potatoes (not too liquid) and soy sauce. I won.

Spaghetti and soy sauce would be better, but I guess they'd still win.

Diarrhoa returned, but part of this is because I accidentally injected about 60ml of air into my stomach today - the homemade "soups" sometimes block the tube and then it's difficult to keep going. Air is likely to enter the fray. Air in the digestive system wants to leave, obviously, and takes some stuff with it on the way. (yucky.)

Right arm: The swelling has wandered off to the lower third of the arm now. When I am in bed, I can stretch the arm again about as normal, I can even twist the lower arm around by 180°, as it should be, without too much pain. When not in bed, the swelling can wander off back into the biceps and block the mobility of the arm some more.

So, I am off to bed once again, will read some more Pratchett.

Bah, sorry babes for not keeping up - but I keep forgetting to log in.

Don't know if I mentioned this already, but this whole thing freaked me out and FINALLY made me dash to my doc to check out a mole-like thing I have. It just appeared and it refuses to change colour or heal so I dashed to get it checked.
And no, I won't be making a Soo... 2.0 post - luckily I am fine. But the thing worried me for some time now and I kept forgetting about getting it checked out.

Oh, did you hear about the new Star Trek series they are planning on making? Please let it be TNG-like and everything-else like.

Argh, I just phoned with the oncologist about how much sense the vaccination against flu would make. "Well, during this type of chemotherapy, the immune system isn't really knocked out so badly that a flu would be lethal. So, it's up to you, really".

In other words, the vaccinations of last week were done for NOTHING as well.

The question would be why he gave me the info paper that covers all the nasty things that a chemotherapy can cause instead of a specific one for this "3x Cisplatin for a day" stuff. I mean, how shall I know which of these side effects are specific for cisplatin and which are for the other things?

Same seems to go for the hair loss side effect. Same probably goes for the sped up menopause. Same probably goes for the ability to have kids (I don't want any of these pestilence bags anyway). Same goes probably for just about everything on that paper.


So, no flu vaccination for me. I don't see the point, because I haven't had a real flu (instead of just a cold) in years, and probably had it only 1 or 2 times in my life so far.



What else is going on... Diarrhoa turned into half-solid poop this morning. That would've been the first time since the 5th August. I'll keep aiming for some constipation effects. :P

The experiment with "solidified green jelly" dish worked very well yesterday, after several problems the day before.

I feel like buying a package of gnocchi and doing experiments with them and soy sauce; or even like going to the veggie restaurant and trying some tabbouleh, a baked slice of potato and a baked piece of carrot.

I will see the logopedician in a few hours and the mad physician afterwards, for that, I need to walk through the center of town. Shouldn't be too much, I hope, else I'll take the bus.

The on/off ads here drive me nuts, because the input field it going up and down on the page while I type. That something the new admin came up with? GAH.

I did some exploration of the sutures on the tongue last night and it appears that they have done something at the far back, where the tongue goes into the lower jaw's skin. There are sutures, too. Might be because of the "gestielter Zungenlappen" thing they supposedly did... erm, that's German for "we apparently took a piece of the tongue, still attached to the blood vessels, cut it out and placed it somewhere else to cover a wound", which I don't quite get. Or maybe they took the piece from back there? Uuuuuuuuuh.

I can just go to the MKG (mouth jaw face surgist, aka super-dentist) who needs to write a prescription for the tumor control sessions next quarter of the year, and don't have to go to the normal dentist before.


So, what remains is to figure out if I need appointments for the fluoridation in the clinic or can just to there when I want to. And I need something to work against my teeth grinding (jaw cramping) habits that I got at the moment, plus an extra fluoridation utensil; probably I can get these from my normal dentist.

Also, I've two cats here that need to be vaccinated just about now, but they can wait another couple of weeks or so until I think that I can actually carry them to a vet. Plus, their teeth might get cleaned then, so it could be expensive.

And finally, I made the mistake of googling "radialis Lappen" (that's "we take a piece of skin and fat, plus 3 attached blood vessels out of your lower arm and insert this into your tongue") yesterday and now I share the excitement and joy of all of the MKGs at the clinic that they didn't have to do this. And oh bloody hell I am glad that the blonde and confident Doc had told me the day before the 2nd surgery that he would stand in the surgery room all the time, observing and if they'd have to do this "radialis Lappen" thing, then he would do it. I didn't trust Doc Nerd to do this, because he didn't emit this certain, trust-inspiring aura of confidence about this specific procedure.

They were all really excited that they didn't have to do this procedure, but I wonder if it might be because the artery that they would've taken is located oddly in this arm, or because my arms are so skinny that they might have needed to find the fat somewhere else? There's still some in the butt and near the belly button, free for taking. The blonde doc was quite irritated by the location of the artery at least. He basically went "WTF" when he examined the arm.



Some more notes about the hierarchy and relations of these docs:

- the MKG who sent me to the clinic had spent a lot of years with them until he had all the academical titles he could get there (a lot). I think he was the previous sub-chief doc there.

- there's an elderly chief doc, "Doc Wealthy" (name translations are fun because they're so fitting somehow), with whom I had next to no contact at all and whom I wouldn't want to cut around in my mouth or in my throat anyway.

Then there were 3 sub-chief docs; already professor in either dentist or normal medicine, and working on the professor title in the other, I guess.

- "Doc Drink" (no, I don't think this name is telling his habits), who did the tongue in the 1st surgery. The one who said: "we're going to do this RIGHT NOW". I think he's the chiefiest of the 3 sub-chiefs.

- the blonde and confident doc (who observed the 2nd surgery)

- "Doc Nerd" (who did the throat in the 1st and the tongue in the 2nd surgery. He did really well at the throat (could've sutured it a bit better, maybe), and caused the s-, sch- and z- troubles at the tongue. His sutures are there to last the full 3-4 weeks though, and he knows how to do knots. He also reads Pratchett, recommended Good Omens (at least I think he did; he used the German name of the novel and I only read them in English). And he was apparently feeling or displaying empathy when he gave me the bad news. While I like all of these things in men (well, except the slightly shoddily done throat suture, the speech impairment and him not reading books in the original language), I don't know what I think of these things in a surgist who's job it is to cut my throat.)

Then there's a whole lot of assistant docs and normal docs, with some hierarchy amongst them probably. I don't even know the names of some of them, which is irritating me in one case, because I'd like to know which of them did the throat in the 2nd surgery. Just because of curiosity. I think I know which it was, but I am not certain. Most of them are working on their professor titles or still on their doctor titles.

- "Doc Pretty" is probably not very high in their hierarchy, because he's only a doctor of dentist medicine yet. That might explain why he had to work 5-6 days per week as the station's doctor and deal with all the petty patient complaints and questions instead of being allowed to do what these people probably dream of: running around in godly green and doing exciting surgeries.




Upier: No, I haven't heard of it, but a mix between DS9 and TNG would be awesome indeed.

Also, yeah. If you've got something funny that won't go away for longer than 2 weeks in your mouth, then bloody move your arse off to the dentist and show it to him.

Regarding ST:
http://www.giantfreakinrobot.com/tel...e-voyager.html

I never watched much of DS9 actually. I remember religiously watching ST it on Sat1 (rthat was when it wasn't full of scripted reatity detective or court "dramas" but they instead showed things like TNG, young Indiana Jones, young Superman and MacGyver) and then they had the première of DS9 and I remember deciding it check it out but it failed to amuse me. I did enjoy the "liquid" man morphing as someone tried to hit him on the head (or something).

Btw - what do you do with soy sauce? I barely used it in my cooking and when I did, I kind of hated it. Do you just pour it over the food or prepare it somehow? Do you add just a tiny bit of it?

It's a special soy sauce, mildly spicy (not hot) and salty. So, I just pour that pre-bottled bottle over the stuff that I want to eat.


The experiment with the baked potato, carrot and tabulleh had the following results:

- carrot = no good. Too much chewing involved, and even when chewed intensely, it still goes for the trachea

- potato = would work, if it's cooked into oblivion before the further processing. As long as it isn't a bio-potato with the skin.

- tabulleh = yes, worked, but too much fine-tuned chewing involved.

I threw the entire mix into the mixer and am eating it now with a spoon. Looks disgusting, but works.


I read in the manual for cancer in the MKG-area that during the worst phase of the radiooncology, you're supposed to prepare NORMAL food and then just throw it with a lot of water into the mixer and then inject it via PEG. That's supposed to work better than the liquid goo and by far better than some crazed soup diet.

You need to mix it really hard though unless you enjoy blocking the tube. I see this every morning now when I PEG the apple+bread breakfast.



DS9's first season was a stinker, but that happens a lot with tv series, if you ask me. Just look at Millennium's "serial killer of the week" 1st season before the paranoid goodness kicked off in the next season.

Later on, O'Brien had some really good episodes, the doctor became so adorable that I named one of my cats after him, Kira became less of a pain in the butt, and the stupid kids grew up and became less obnoxious. Also, they had Gul Dukat and Kai Win (can't spell them properly), and lots of Jeffrey Combs as Weyoun.

In contrast to other ST, they had plot arcs that could extend for as long as 7 episodes in a row, then some break, and then they sometimes returned to the plot arc. This is something that I consider to be extremely favourable in a series, because I usually do not watch it on TV, but on DVD later on. Plot arcs are awesome then.

Alllllllllright. Oh my gosh.


1. While swallowing, press the tip of the tongue to the top of the rooftop of the mouth. Where it's structured. Right behind the front teeth.

I am not particularly sure where I put it before, but the tip of the tongue (which is now somewhat the side of the tongue) aimed to get through the fangs to the left now, causing the "when I chew, I tend to bite my tongue now" issue.



2. English lacks soft "s" sounds (as in "optimism", just a bit softer). German has them. Lots of them. We're starting with them. If you pronounce the s in "is" softer than it usually is, then, "is there something" gives a nice variety of s/th sounds to work with, by the way.



3. So, this is "tip of the tongue" stuff. Problem is that the former tip of the tongue is now tucked away to the side. There's a new tip of the tongue, and it can do the s sounds.

However, I am not entirely sure how the tongue will behave once it's not tied up anymore at all, i.e. in 1-2 weeks from now. Maybe the old tip of the tongue can then be the new tip of the tongue again.

Also, when I put soundstoppers into my ears and just hear my voice via the body/bones, it thoundth very much like lithping when the "new tip of the tongue" does the job. This effect is lessened when listening to both the body/bones voice and the one emitted from the mouth - much better than what I did before.

Looks like I'll do a lot of "ssssss"ing for a while now and talk rubbish with words with "s"s, because that cleared up the voice quite a bit. I could even do "z" with the "new tip of the tongue".



4. the swallowing lessens don't go quickly enough for my taste. She introduced me to "liquifying solidified green jelly with spit" today, while I am myself already at "I want to eat solid stuff again!!!" and doing experiments with baked potatoes, carrots and tabulleh. She's also talking too much about soups. I don't want a soup diet.




5. The physician explained my arm with the lack of lymph nodes and the issues that my lymph system has right now, prescribed a cooling gel and was optimistic that the arm would regain all mobility in a short while.

Also, she told me that the vaccination's purpose was the one against pertussis (combined with tetanus, diphteria and something else); mostly because of the funny and unhygienic hole in my trachea. She still recommends the vaccination against flu, but I need a few days to think about it. And to regain the mobility of the right arm before I let anyone poke anything into it. The left arm won't be touched by this physician at all.



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Oh, my mistake. There is one of these "s" sounds in "easier". English does have them, too. But they're pretty rare - and I am relatively sure that this was the reason why I thought that I could speak English better now than German at first.

Well, this was awesome. I now know how the dude is called that came and visited me in the intense care unit after the first surgery. We had an interesting "discussion" then; my first one of the "me with pen+paper, other person replies verbally". He actually fetched me something to write with. And he drew a bit of what they had done in the surgery to the tongue and then said that "maybe some of it should remain a secret of our profession though" because I seemed to fall asleep while he was drawing.

First contact with him outside of short eye contact + smiles during the doctors' visit in the clinic. He didn't know yet that I always come with half a dozen questions on my writing block (now he knows.) He's cool.

He explained the surgery technique to me. They cut a piece of the tongue from the *far* back of it, let the veins and arteries attached to it. Then they poked a hole through the tongue and fiddled the piece of skin through it somehow, still leaving the blood vessels intact. And then they sewed the tumor wound closed with this new piece.

If they had known that there was a resection necessary during the 1st surgery, this piece of skin would fit better and I wouldn't have the issues with the "s" sounds now.

Very interesting. Let's hope it wasn't just skin, but also some muscle, because this would mean that I can train and increase the size of this new part, making the tongue less crooked and stopping my issues with the "s" sounds.

This technique explains so much. The swallowing issues. The odd suture threads at the back of the tongue, tickling my trachea. The strange suture threads at the bottom of the tongue that made me go "wtf" yesterday when I discovered them (this is the hole through which the piece of skin was put through, and the veins and arteries of it are connected there). And so on.



And oooh yeah, they must've dislocated the jaw for the surgery. Well, I don't mind.



Also, he gave me a clear: "no, if I were in your shoes, I wouldn't get a vaccination against flu right now".

I'm collecting second and third and fourth and fifth opinions about this right now to make up my mind. Looks quite clearly like a trend to me as in: "the more someone knows about me and this illness, the less this person thinks that I should get the vaccination; the less qualified someone is, the more they recommend the vaccination."

I'm going to ask some more noobs in oncology, plus my friend the radiation therapist, plus the consultant doctors at my insurance.



Anyway, I am attacking a bun with some caprese right now. **** the soups.

Tomatoes need to be peeled though, stupid things.

[... 1-2 hours later ...]

Well, that was exciting. I nibbled about 5-10% of the thing, the I threw it into the mixer, added water and et the rest with a spoon. Maybe I should continue this type of experiments with simple toast and gouda, but I really wanted to eat one of these buns again. And as my gastroenterologist once said: "as soon as the diarrhea is under control, just eat whatever you feel like. Don't do any stupid diets."

So. Gnocchi (overcooked, but not totally mashed up. I am talking about the pasta type, not the stuff made from corn flour) with soy sauce and some cheese.

The problem are the threads on top of the tongue, which, judging from the status of the whole one I spit out some hours ago, will last for another couple of days. The self-resorption had barely begun yet. The gnocchi did get attached to these threads and knots and I had to poke them lose. This made swallowing a difficult thing, done by the right side of the tongue alone. Several gnocchi happily found the way into the trachea, but I could cough them out - I should stay clear from eating in public until I can do this again. It probably looks grosser than me pulling the PEG out of my undies to eat something with the syringe. My cat's can tolerate the latter but are going away in disgust when I am coughing up stuff.

Anyway, I managed to eat the whole portion without using the mixer. It took me 50 minutes for the small bowl though. I think I should add some of the liquid goo and spread it over the day; I really do not want to drop below the 60kg mark.

Weight worries, the opposite way around. It's harder not to lose weight when your goal is to put on some weight, than not to grow fatter when you'd like to be a bit more model-like built. Looking at the cancer patients of both genders, this is a typical problem. But oh man, I am SO not going to be one of them. Hand over the cream, I'm going to get me some dessert.... well, as soon as Julian allows me to leave this chair.


Speaking of cats: Julian has forgiven me my transgressions and is back on my lap right now. Well, he's doing the kneading thing on the lap, but after 10 minutes of this, he'll collapse onto it after a job well done.

It pains me to think of the two furrballs being traumatized 3 more times in the next 8 weeks by going back to the apartment of my friend. Maybe I can arrange some other way to keep them well-fed during the chemotherapy. Maybe utilize the neighbor that was sort of hitting on me a while ago, before I got my "2nd smile & extra orifice".

The "extra orifice" is at 7x6.5mm now, with a funny way of producing new skin to the erm right. That's 1mm and 1.5mm less than on Sunday. I am still angry because of the "oh yes, you can shower again now" thing from last Tuesday, because that had ripped the orifice from 6x6mm back to 10x10mm or so.

Yeah well, the dude today also thought it was still big, but advised me to just stay calm and wait. If it's still open in 8 weeks, they'll shut it off in another full narcosis surgery, because it's apparently too complex to go it just on the fly (doh?). But hey, I had also thought that the removal of the "erythroplakia" would've been an easy and quick matter. He said something about "taking skin from somewhere else and putting it in there", I think. I guess these guys just love to do this stuff, so they can't just use a staple gun or something.



What I find very disturbing today, already the whole afternoon, is the strange unreal feeling about it all. I can't really imagine myself getting radiated and poisoned in less than 2 weeks from now. It's just not real.

What's stranger is that the full last month also feels unreal, as if it hadn't happened at all.

Interesting new coping mechanic, perhaps. My best friend is feeling just the same at the moment, by the way.

I have one excuse though: I am sleep deprived. Couldn't fall asleep last night until 3am or so, and I had to get out around 6:30.


---------------

Nah, I can correct the critical line for the weight. Let's not drop below 55kg, shall we. Below that, it's approaching the weight range of the anorexia nervosa style, and I don't want to go down there.

I wonder what a slice of pizza might be like when put into the mixer.

I am doing better.

The weight is worrying me quite a bit now though; I am hovering at around 60kg (8kg less than 1 month ago). While understandable due to the diarrhea, the "excellent" cuisine in the hospital and all the stress, I don't think that a weight loss of more than 10% is a good thing at this point. Actually, I know that even a weight loss of 5% reduces the chances of getting through this quite a bit (I picked that up when I researched cancer a little bit yesterday, just before I stopped doing more research).

So, what now?

I'm on (untoasted) toast with butter and gouda cheese now. For the first batch of this, I needed 50 minutes yesterday, 30-40 minutes yesterday afternoon, and 10-20 minutes this morning. The faster I can eat, the more I can consume, I guess. So this is good. Also, I added more butter. I needs not to be disgustingly buttered though.

Also, I *drank* the apple+old toast+water thing yesterday, which was not so good for the tongue. This stuff is probably relatively healthy, so I will keep brewing it up, but I'll PEG it. And I heard that other veggies can be mixed up into juice as well, so maybe some brokkoli and tomatoes and other interesting veggies like that need to be bought.


I just hate weight issues. I've been at the "I don't want to lose any more weight again anymore!" edge once already, after my hyperthyriosis (and autonomous adenoma that was, not malign). I had been at 45kg then, which equals a BMI of: "oh, holy ****; let's pour some sugar into her veins" (14.8 in numbers)

Then I bounced towards the other end at around 2-3 years ago. I really have to say that "I must put on some weight" is more troubling than the other way around. (Anorexics and 90% of the western females will hate me for saying so, though.) Because, quite honestly, I am baffled as of how to put on weight.

60kg is sort of ideal for my size though. Want to keep it.

Anyway, this is important, because the starvation effect due to cancer is extra nasty and the main reason that people die. It apparently means that the skeletal musculature gets devoured as well as everything else, and this is apparently a bad thing.

How about 500ml of cocoa per day? That supposedly covers 50% of the sugar input per day and has about as many calories as 200ml of the liquid goo - without causing diarrhea.



So, this is the new topic to worry about, I guess. I can worry later about the possibility that I'll go deaf after the chemotherapy.

Can you eat yoghurt? Or milk?
I've been eating bran of ages now (I think it's Kleie in German) and while I mostly stick to the normal version of it:

I was forced to try out some that are already ground down to pieces, making them look like flour. That sounds like something you might be able to throw into your menu - since it's really healthy but still more of a food than veggies.
I'd suggest Nutella - but you need to lick the spoon for that!

Oh and my belly fat hates you too! >.>