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Sooo...

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Well, since last Friday, I know officially that I've cancer on the side of my tongue. Next week, there will be some intense extra diagnosis fun in the hospital; and according to the results of these, then there will be therapy. This will inevitably involve a surgery at the tongue, which, according to my sources, can last 10-20 hours (it's not really something you'd want to do.)

There are several things that annoy me about all of this: from fear of loss of my ability to speak, over fear of loss of the teeth due to the x-ray therapy stuff, over to more simple things: like my cats not being allowed to visit me in the hospital (and me probably being in no shape to go and visit them too often).

And, ridiculous enough, another detail that annoys me is the fact that I'll miss out on the Zaishen quests. With the insanely long quest rotation time of the vanquishes, this means that I won't be able to take advantage of them and use them as my guide when I keep pushing Nefertari towards GWAMM... because, yeah, it's ridiculous, but I want to do that.


Yeah well, also it's scary what kind of emotions pop up at the moment. It goes from extreme, utter depression (I've had crying fits that I wouldn't have thought possible and my friends and family don't want to hear anymore about death now... how helpful); to some sort of hysteria that unleashes itself in form of some manic euphoria; over to massive anger and hate against everyone.

There are nightmares too, now. I haven't slept at all last night because one of these popped up when I was about to fall asleep.



So. I think that blogging about it might be somewhat therapeutic - and I even fit in a connection to GW! I really can't be arsed to set up a blog somewhere else right now just for this, so this here will have to do.
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  1. Lytha's Avatar
    Hm yes.

    When I said "assaults me with smalltalk at mealtimes", I mean the following: He sits at the table in the diagonal opposite corner of the room. He seems to be lurking until I get up to get me something to drink or some salad or whatever, and then gets up to get the same while taking the opportunity to tell me about Bad Öxen, where he happened to be 3 years ago, you know. (And I am sure that that rehab clinic's village isn't actually written like that, but whatever).

    Other people here don't do suchlike activities. With them, it's just "hello", "morning", evening", and PERHAPS a "have you slept well tonight?"

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


    I've some terrible news now.

    First, let me do a drawing of our seating order:



    |
    |
    | 11 12
    # Table 3
    # 9 10
    #
    # 7 8
    # Table 2
    # 5 6
    #
    # 3 4
    # Table 1
    # 1 2


    # = wall
    | = windows

    I'm sitting on chair #6.
    Chair #5 is the place of Mr Be., my favourite table mate and one of my favourite people here in total.
    Chair #8 held Mr W., the guy with the trach. He departed towards home this Tuesday, now this chair is empty.
    Chair #7 is occupied by Carola.

    Due to sight contact and many greetings dealt between us, our table is in very good standing with table #3.

    Table #1 keeps closer to themselves due to their age and perhaps as well due to my horribly picky eating habits ("there are so many starving children in the world who would love to have a potato - and that woman next table always returns more than half of her food!!"). I say "hello" to them, but they barely recognize the greeting.



    Anyway, chair #4 was the home of Mr. Ba., a guy who entertained table #2 and #3 for 3 weeks now by having an exceptional need for sitting space. His chair, when he's sitting on it, occupies about 2/3 of the room between our tables. I'm squeezing myself into the remaining space, and whenever the lady from chair #3 or Mr. Be. want to go and get something, they're having a hard time to get through.

    This led to a stronger companionship between table #2 and #3, because we've always been pushing the tables some centimeters closer to the windows in teamwork whenever it got too tight - thus giving Mr. Ba. more room to sit on.

    It was funny.


    .... and the bad news is that he'll be departing towards home tomorrow.
    Updated 15-02-2012 at 18:01 by Lytha
  2. Lytha's Avatar
    Excellent news: the guy who has replaced Mr. Ba. needs even MORE space.


    Anyway... the time schedule software seems to hate me by now so much that it assigned a grand total of 3 therapies for the 2 remaining days here (I expected around 15 therapies, judging from the last few weeks), and so I went to the time scheduling team once again and complained some more. If I learned anything here, it's complaining - in a friendly and nice manner, but getting what I want in the end. I've no doubt that the time schedulers were quite pissed off at me anyway, but we managed to correct the time tables in a friendly manner at all times.

    I didn't bother to ask for the cold water treatment again this week - I really don't get the point of it, except that it's a temperature shock that wakes you up by the scare moment. Well. I'd rather sleep a bit longer than to have that. Also, it means no more opportunities for the scheduling software to put me and Mr Creep into the cold water room at the same time. A win-win situation, really.

    Besides, a very quick google just did show me what I suspected anyway: no studies proving that there's actually any point in this type of treatment.


    By the way, my sister was here yesterday. She instantly recognized The Creep without me pointing him out, because he crept up to her as well immediately at lunch. So, it doesn't seem to be just in my head. Nice.

    Did I mention already that I bothered to google that rehab clinic he must've been yapping about? It's for urological, gynecological, gastro-enteral, and systemic (meaning: leukemia) cancers. The only matching group of cancers between that clinic and this one here would be the urological area. And that's the area in which I simply just can't have had cancer when he was there, 3 years ago. In other words: he's an idiot, in addition to being a creep.



    Oh, and one more thing: my new tablemate is a HNO cancer as well. When you talk to him, he's a very *NORMAL* guy (and quite pleasant to talk to, if I may say so). I was absolutely overjoyed to hear that he's also having his problems with blood extraction and HNO procedures, just as I do. Only that he said that he'd puke at the doctors, while I cry and turn into jelly.
    Updated 20-02-2012 at 14:52 by Lytha
  3. Lytha's Avatar
    Some more hugs and goodbyes and I was already off.

    Well, the journey with the trains was quite uneventful except that in each of them there was someone sitting on my booked place. But they gave in and went away immediately after I confronted them.

    I did weigh my luggage as soon as I was back home. 11kg in total. That's about the amount of weight to be expected from a basket full of annoyed tomcats, but the luggage was split into 3 parts: laptop bag, backpack, cardboard-with-my-paintings from art therapy. The 3 way split probably made the weight more bearable.

    So, I'm still somewhat afraid of later today when I go and get the cats. If it really won't work, I'll ask people here in the house if they can give me some assistance with the cat basket.


    I was REALLY glad to see that (a) the house hasn't burned down or something, (b) nobody broke into my home while I was gone, (c) the dust particles from below the shelves haven't evolved into a new form of life while I was gone, (d) it wasn't totally frigging cold and freezing in here and the radiators are still working.


    -----------


    The cats are here. Julian went below the bed immediately and Geordi is inspecting the apartment thoroughly while throwing poisonous glances at me.

    I managed to carry them up the stairs - so the special gym for us special people *did* do something for the muscles, after all.
    Updated 22-02-2012 at 19:52 by Lytha
  4. Lytha's Avatar
    Yeah, what shall I say. 1 day after I was back home, Julian got a FUS (meaning: he had accumulated urinary stones and managed to put them into his urethra (all the way down into the penis) and he couldn't pee anymore). So, my priorities changed. He's top #1 priority now. At the moment, we're visiting the vet on a daily basis.

    Today, he peed again, and the overall amount of urine matched that of a normal morning pee. However, he needed 1 hour to dribble it all out of himself.


    Anyway.

    Zeh Lump will get another sonography, tomorrow. I finally told an oncologist about the perma-bleeding and he told me to go and see a gynecologist about it. So, I had for the first time the effect of "what does a doctor's assistant say to my cancer story after hearing it for the very first time" - bizarre, to say the least.

    ... also, I'd REALLY like to know why people tend to interpret a year of birth "197x" as a "195x" all the time as soon as they've heard the word "cancer" in correlation to this person. I know that I lisp and I can understand the problem with other numbers, i.e. a "90 = 19" ("neunzig = neunzehn" - I can eliminate this problem by going all rhinelandian and transforming it into a "neunzisch"), but 70 and 50 "siebzig != fünfzig")? Doh. Probably some freudian involved there. "cancer => this person must be older than that".
  5. Lytha's Avatar
    Urgh. I'll be in the hospital in about 2 hours. Should drink some cocoa or something.

    Bags are packed and I don't think that I've forgotten something.

    Julian and Geordi will stay with Astrid for these 2.5 days. It's not strictly necessary - I am sure that if I wanted, I could force the MKGs to release me next night (or rather force them to agree with me that I don't have to spend the pre-surgery night in their hospitality) and then I could feed the tomcats on Wednesday earliest morning. But she said that the two ratcats will be a very welcome distraction and she might need that at this time indeed.

    Yeah well. Both know very well what it means if I stuff things into the bags. It means that I'm going to wander around in the wilderness again (from their point of view). And that I might return in a half-zombiefied state, or at least that I'll dare to smell strangely afterwards.

    They're very scandalized at the moment though because someone also didn't put food into their bowls, but stuffed the bowls into a bag instead. The bowls will travel to Astrid as well. I think it's better when they breakfast over there.



    Julian did manage to pee normally twice yesterday, but he apparently prefers to do so without witnesses. When there are witnesses, he's just dribbling pathetically instead. Pathetically, but very eager to show that he's cooperating.

    I know that it was him who peed normally because I analysed the PH value of the results. Geordi has a very high PH value, Julian is in the lower PH value regions at the moment, thanks to his medicine.
  6. Lytha's Avatar
    I'm back out of the hospital. (Surgery #6 of my life done.) The surgeon's visual impression of the two lumps was: thrombosis in the stump of a blood vessel (cut off during the neck dissection) + capsule around a subcutaneous suture thread.

    Both lumps are now in the pathology for a full analysis, and they'll know the results in 5 days.



    This was... interesting. Interesting to be back at the MKG.

    Doc Pretty was still there, and at first, the plan was that the only chief doc of them who hadn't cut around in me yet should do this surgery. But then there was a very sudden change of plans on Wednesday, and my most favourite chief doc did it instead (the one who was excited to see that I read books of Terry Pratchett, and who had told me about the lymph node metastasis after the first surgery last August). I'm quite happy that it was him who did the surgery, because he had also done a quick sonography of the lumps on the evening before. So he knew exactly what he was supposed to remove. He was now present at all 3 of my surgeries at the MKG.

    I know that I wrote that I felt queasy about him going for my tongue last August, because he didn't emit the aura of a real hardcore pro master of butchery. But when I went nuts last night (more about that later), I think I started to aim some Stockholm syndrome towards him.


    Anyway. Some of the nurses still knew me by name. Others knew my face but didn't remember when we had met before.

    I also extended my claws a bit more this time, when it was about the food and feeding (I told nurse Claudia, for instance, that I'd graciously decline to consume their "laxative" (referring to their brand of liquid goo); the line was delivered with a nasty smile that she indeed interpreted correctly), which made her leave the room in a sad, sad panda manner. Aww.

    They appear to have next to zero experience with people at this stage of past the radiation therapy. I was offered mashed veggies (yuck) and bread. Bread, of all things. Bread with a consistency reminding me of paper towels or something. So, I basically went on a radical diet while there, except the two bags of liquid goo that I had brought with me and two yogurts and the sugar in my tea.


    Roomies were interesting this time. Ute and Claudia.

    Our room had "tongue cancer" as the theme (though Ute's cancer had been below the tongue). Ute was there for a scar correction in the mouth. Claudia had had her surgeries 2 and 1 week before. And I was there for the "test if it's a recurrence" stage. Basically the three stages of cancer "which has probably been defeated": Claudia at the start, me in the middle, and Ute with the scar correction and cosmetic corrections at the end.

    Theoretically, this theme was nice.

    Practically, it was quite nightmarish. Both had portable tvs. Both watched them, but not the same channel. Both thought that the other one was watching their tv so noisily that they'd have to increase their own volume some more.

    And I had the bed in the middle. Quite the experience.

    Even worse was that Ute needed some oxygen last night (or so she said), and the blubbering bottle was right above my head. Then she wanted to sleep with the light on, and that lightbulb was also right above my head. After one hour, I left the room and phoned with my sister. She told me that it wouldn't be an issue to ask to be released at night. Or to ask for earplugs. I opted for the earplugs and switched off the lights and got about 2 hours of sleep in the end.

    So, I am extremely deprived of sleep now, somewhat starved as well. Not entirely sure what to do now.


    Oh, and the ratcats misbehaved at their catsitter as badly as imaginable. Ouchies.
    Updated 15-03-2012 at 14:07 by Lytha
  7. Lytha's Avatar
    2nd post surgery day syndrome strikes again.

    Only that this time, I had to drag Julian to the vet today and myself to the physician, instead of relaxing in a bed. I won't move now anymore though until tomorrow morning or something. Julian is definitely doing better now. I went to the vet with a fighting attitude ("this cat won't be drugged and catheterized today, because I've seen him pee rather normally this morning. And he peed very normally at the start of the week when I wasn't looking, but I found some sizable chunks of pee in the litterbox, with the pH value matching Julian.") - the plan had been to drug him up today and to try and put a catheter into his penis again to clean it up. But I've had enough invasive medical procedures for this week. And as I see it, there are risks in putting tubes into body orifices. For instance, my latest intubation left me without a voice. So, a catheter could hurt his urether again and cause issues again. The vet agreed after he had a look at Julian and after Julian peed properly and eagerly right away.


    Oh well. I'm not feeling good at all. Took some Novalgin already. When I close my eyes, I see things, such as open surgery wounds and stuff like that. It's 2nd day post-surgery syndrome, at its best.
  8. Lytha's Avatar
    None of the small lumps was malign. Both were encapsulated subcutaneous suture threads.

    I now want to wait for the next CT and hopefully then start to slowly return to "normality".



    Anyway, more important is that Julian has another somewhat major appointment with the vet in an hour. Let's hope that he can finally pee like a normal cat afterwards again.
  9. Lytha's Avatar
    Yo. I'm still alive, and so is Julian, the peeing tomcat. He still isn't really peeing properly, but he is getting better.

    I've another week of medical checkups past me now; last week, all of them wanted to see me again and they did another MRT, this week, only a CT & sono session so far. No red alerts this time, and the red alerts from last time were reduced to yellow or green alerts.


    Anyway, some things aren't cool.

    Last week, while I was just dragging myself to a doctor for the insurance papers, my insurance called me. More or less, I was asked politely when I'd be off to work again. Well, not in these words; she asked me about the current status of the sickness and the sick leave. So I told her quite bluntly that the CT of today was done on the purpose to figure out if there's really a metastasis in the liver or not - that shut her up quite immediately, so she didn't tell me to go back to work. Anyway, this was not so cool.

    And conveniently, this week, I got feedback from the disability thing. They want a photo of me now so that I can get a proper card for this, and they're calling it a 100% disability, which shocked me completely. I had expected something closer to 50%. Also, it won't be a disability thing with which I can terrorize other people in a bus legally ("get up and let me sit down, I've disability"), which sucks.

    Several other things aren't cool as well.

    The logopedician is annoying (inexperienced and incompetent), especially now that I've had a better one during rehab and can compare them. I think that I have to sit out these 10 sessions with her though before I can change to someone else.

    Geordi is still shaving his tummy, which is annoying.

    I'm an absolute nervous wreck whenever someone puts a needle into my veins, and I am borderlining hysteria when I'm put into a CT machine (because it looks so much like the radiation therapy machine).

    Emotions are also still going berserk. Not as badly as half a year ago, but it's still in turmoil.
  10. Lytha's Avatar
    Well. As soon as I'm trying to get better, the cats strike again. Julian had an episode of "I NEED to pee NOW" every 2 minutes for a while, and the urine looked red. I've no idea how he managed to hurt his urethra again, because he didn't have any crystals in it anymore. Maybe there was still a little lump of crystals stuck above his penis bone; source of the leukocytes, and source of the blood now?? Anyway, he received antibiotics (wide range, this time), a painkiller, had his temperature measured, and a palpatoric examination of the tummy (bladder wasn't full at all, so no red alert. Just back to orange alert level.)

    After we were back home, he stopped the peeing. Well, he was back on his toilet twice since then, but that's alright and normal.

    He had started this right after I had cleaned their litterbox and made it proper and nice and fresh. But I really don't know what brought this on. Especially the bleeding.


    Also, Geordi acted like a complete dick towards Julian and I had to separate them for a few hours. Yeah. It's not normal that Julian was peeing into the shower and onto the kitchen floor and that he then had these wide eyes, smelled like a vet had put a thermometer into his butt, and as if he had peed into his pants. But it that a reason to hit him into the face? I really don't think so.



    So. What else?

    I've seen a 52.5 on the scales. Let's keep in mind though that this set of scales always seemed to be 2kg below the real weight. Well, it does show the 0 properly, but it was 2kg off back when I was about 10kg heavier than now.

    Still, I can feel interesting bones now where you normally have a layer of fat or muscles.

    As a result of the 52.5, I abandoned my easter project of "let's try if I really need the liquid goo anymore" on my own and instantly. Still, it apparently seems to be a bigger problem in the eyes of other people like the psychotherapist. I guess the oncologists also wouldn't be impressed at all. I remember how they looked at me when I told them that I thought that I still had a pretty wide weight margin, because back in 2001 during my hyperthyriosis, I was down to 46kg or something.

    Anyway, I'm reasonably sure that the weight loss happens because I don't force myself to eat "enough", not because there are some malign cells doing funny things somewhere.


    I also had a strange feeling/thought today. "One year ago, it turned malign". Well; might've happened a bit earlier, but with a malignity of "G2", I guess it could now be indeed the "birthday of the cancer". The erythroplakia had been somewhat inflammated before, but it can't have been malign for very long; then there would've been more metastases.



    Oh, and some more about the logopedician... that is "speech therapist", by the way. I'll still to calling her "incompetent and inexperienced", but also a "one trick pony".

    This chick is around 60 years old and probably been working as a logopedician for the last 35 years. She's one of those speech therapists who didn't visit a university to get the job qualification. I'm sure that she works with stuttering kids in about 99% of her cases; however, she had one other "cancer in the mouth" patient before - and this qualifies her of course as a specialist about these. In fact, she probably knows more about mouth/nose/throat stuff than a regular doctor specialised in this area, for sure. So she says, at least. That's why I call her "incompetent" and "inexperienced".

    She also INSISTS that we're not working on my i, s, z. No. Instead, we need to focus on where the **** I shall put my tongue when swallowing, even if I've absolutely no issues with that anymore.

    For this swallowing technique, she has developed a funny method involving a brightly coloured plastic ring, the tip of the tongue, a mirror, and some crazed maneuvres like "swallow with your mouth open now".

    Yeah, I am absolutely learning how to juggle brightly coloured plastic rings with my tongue there. This is SO going to help me pronounce the i, s and z better, isn't it?

    What's making this even worse is that I noticed the drawings pinned to the wall behind the patient's chair in her room last time. There are about 50 drawings, most look as if they were made by children. And all of them have brightly coloured plastic rings glued to them in some spots. For instance, that horrifying female face had the rings as eyes. The horrible apple tree had them as apple fruits.

    And this is why I call her a "one trick pony".

    This plastic ring crap seems to be the only thing she is doing with everyone.


    Before, I could learn about 1 thing per session from these speech therapy sessions (it's like finding the needle in the haystack, or the tiny gem in the pile of crap). But last Friday had zero useful things.

    She told me 2.5 times again about that other mouth cancer person. She seems to think that "I decide that we do my fabulous brightly coloured plastic ring technique even though the patient tells me repeatedly that she thinks that this is missing the point of why she is here" means "We agreed that we should do this fabulous technique".

    Oh yeah, and she's allergic against cat hair. It's of course absolutely my fault that I didn't ask the vet to kill both of my cats yet since I started my fabulous and important logopedic therapy with her so that she could move even closer to me during the sessions. I mean, without the cats, she could sit on my lap instead of at this HNO alike distance.


    I think I'll contact the insurance if I really have to waste all the therapy sessions with that chick of if I can change to someone else earlier.

    In any case, my disapprovement of her does not help any motivation to actually do these exercises at home.
    Updated 15-04-2012 at 23:00 by Lytha
  11. Lytha's Avatar
    Julian the amazing peeing tomcat had a very surprising almost perfect urine today. Next to no erythrocytes, just a few leukocytes.

    I don't understand this, after the drama of last sunday.

    Unless he really had a single struvit crystal left stuck somewhere above his penis bone and it left his body on sunday, scratching his urethra all the way to the exit. The vet thought it was more likely to be some inflammation in the bladder though, because it had felt like that.



    Anyway, the trouble with Julian means trouble with the delivery of the liquid goo. I need to go to the vet on Thursday and on Thursday, the delivery was scheduled. The Thursday delivery dude apparently is not allowed to just leave the packages infront of my door, while the Monday delivery dude is allowed to do so. Since nobody knows when exactly the delivery dudes will make it to my house, we've re-scheduled it to next Monday now. Even though we know that I'll be off to the clinic then for the whole morning, while I'm only out of the house on Thursday from 16:40 onwards.

    Oh well.


    There were actually one or two little gems in the pile of poop last Monday during the logopedia. She was very offended that I didn't like the brightly coloured plastic ring exercises though, and of course is a sick pet no reason not to learn how to juggle plastic rings with the tongue. Still, there were one or two useful things this time.

    You know, it was really the sight of all these drawings with the plastic rings glued to them that made something inside me go "click". I mean, someone who only has worked with one case similar to yourself and thus considers herself to be an expert is just ridiculous, but bearable. But someone who is so obviously a one trick pony and apparently really only does the "one therapy doesn't fit anyone" thing, that was too much.
  12. Lytha's Avatar
    Do you think that you can get jeans in about 28/34 in a normal shop or is this more a case for "special sizes"? Might be 27/34 or 29/34, too; I guess it depends on the cut near the butt.

    The diet therapist told me today that she thinks it's really unlikely that I'll grow chubby again, so I'm going to get me some new and fitting jeans on Wednesday. Hey, come on, at least it's not size zero (yet... *cough*.)

    Anyway, she was happy because there was definitely more muscle mass inside of me than before, even though the total weight had gone down.
  13. Lytha's Avatar
    Hm... 28/34 is a bit too wide, and 27/34 was simply not available. Also, the somewhat chubby shopkeeper gave me a nasty and jealous glare when I inquired about that size. 27/32 is too short. Yeah well, I went for the 28/34 and I'm extremely happy about my new jeans. It now looks as if I'm thin like that on purpose, not either like I was anxiously hiding my anorexia in the oversize jeans or like I've got the cancer look.


    So. Did I mention already that I'll have a HNO examination on Friday? I'm going crazy because of it already, because I REALLY REALLY can't stand the tube that'll be put into my nose during that. Today, my psychotherapist and I developed something like a script how to get through that Friday, but I don't know how well this will work in reality. I'll definitely bring either a fluffy pillow or a fluffy plushy.

    One of the main problems with HNO examinations is that you aren't allowed to curl up into a fetal position during these. These positions brought me through the last few needle experiences during the CT and MRT sessions. Nooo, you have to sit straight and aren't even allowed to cross your legs. I HATE them HNO jerks.

    Anyway, the examination has to be done, because we all really would like to know why my voice is still all croaky, 6 weeks after the intubation that had caused it to be like this.
  14. Lytha's Avatar
    Well, this wasn't TOO bad, actually. Telling them that I am absolutely afraid of them and that they shall tell me everything they're about to do helps. And the fluffy pillow helped as well. I tranced off before he did the nasal probe procedure, and the chief doc who later on also looked at me didn't do another nasal probe.

    The result of today is that they want to do another pan-endoscopy. Next week. I convinced them that we have to do it on Friday instead of on my birthday or on a day where I already have 2+ appointments scheduled. I'll have to arrive shortly before the surgery procedure and I will have to stay over night.

    Oh the joy.
  15. Lytha's Avatar
    Wow. This was bad. Seriously bad.

    You know that I agreed last week's Friday that the HNOs should do another panendoscopy, i.e. looking into the throat while I'm knocked out. I also agreed that they should be allowed to take biopsy samples, if necessary.

    Instead of this, some rather interesting things happened, which actually motivated me to consider looking for a lawyer in a week or so.

    Let's begin with the night to this week's Friday. I was panicking because of the upcoming surgery, so I phoned with a friend late at night. During this phonecall, the voice suddenly recovered with a mega-jump from "croaky old hag with laryngitis" to "wow, it almost sounds normal again, except for the echo effect at the high-pitched sounds". This actually gave me quite a relief and some hope that the voice would recover again, which I almost had given up on during those 7 croaky weeks.

    Anyway, next morning, I had to go to the HNOs at the hospital. On the way to their building, I walked past the oncology and realized that I would much rather walk in there than into the HNO building. HNO has surpassed all the fears that I once held against the cancer-doctors and their way of treating that illness. Good start for that day.

    Once inside of the HNO (knowing them, I arrived about half an hour before schedule), I was moved out of their floor up to the eye-clinic. Apparently, the HNOs didn't have any free rooms that day. I didn't mourn that though, because only just the sight of some of these nurses, doctors and rooms gave me an expressive nausea (luckily, I had followed the advice of the anesthesia guy and an empty stomach.)

    Up there in my room (#11), I relaxed, because I knew that I had 2 hours before I'd be called to the surgery.

    Only that after about 10 minutes of relaxation, a hectic nurse arrived with the happy pill and the surgery room dress for me and told me that my transport was already waiting. I changed barely in time before the elderly and mustached transport guy arrived indeed in my room. He then told me to relax and get ready in my time, while I was running around in that ridiculous surgery room outfit which barely covers your butt. I didn't feel as if he gawked. Maybe he did. Doesn't matter.

    What mattered was that the happy pill didn't have time to do anything at all in the few minutes until we were downstairs in the surgery area.

    "Why are you shaking so badly?" the anesthesician asked me.
    "Because I don't think that the pill can actually do anything yet?"
    "Why didn't you take it earlier?"
    "I only got it about 5 minutes ago."
    "Oh."

    She told somebody else outside of the room about that, so maybe this caused some improvement for other patients that day.

    The good things about her were that she gave the pill 15 minutes to start working, that she knew how to put a needle into a vein without poking, and that she told me her name twice (I also forgot it twice). Also, she wore the calming blue colour.

    I didn't fancy it so much though that she had to stick the EKG things onto my thorax just when the male nurse entered the room. Okay, I mean, this nurse has already seen most of me. He was either present when they put a catheter into me or he was the one who painted my boobs with betaisodona during the port implantation. But these things weren't done while I was awake and afraid.

    I also didn't fancy the following very much:

    She: "So, had a nice breakfast today?"
    Me: "... do you want to pull my leg or something?"
    She: "Nah, it's just that some people just ignore what we tell them before surgeries."
    Me: "Alright. I breakfasted on a delicious L-thyrox and on the happy pill just now."

    What's making this worse is actually that she basically repeated the question a while later ("at what time did you have your last drink?"), as if she thought that I was a liar.


    Yeah well. So, this time, I was awake all the time until the surgeon and the chief HNO arrived. I was even awake enough to notice that the knockout injection hurt like something awful in some parts of the arm. Which is apparently normal. Or so the male nurse told me when I told them and started to twitch.

    Each time, I'm awake a little bit longer. Probably I'll stay awake for the whole surgery in a few more times.


    Right. Anyway, I woke up to the sound of my own coughing. And to the pain at the back of the tongue and in the area of the right tonsil. And to more coughing. And then to the fact that my voice is now gone down to 0% left. I can only whisper now. And that hurts.

    The apparently did a little more than just look into my throat. No, they surgically "removed" the edemas that sat on the vocal lips. This horrifies me totally, because when I think of edemas, "cutting it away" is really the last thing on my mind. Especially if that kind of surgery is not done by a guy specialized in phoniatrics, but by a lousy HNO noob.

    Also, apparently, painkillers were not really on the order of the day. The button for calling the nurses had been put out of my immediate reach as well, and the nurses only felt inclined to look after me about every 5 hours at the max. I was also alone in the room, so really nobody would have noticed at all if I had indeed started to suffocate - that was the reason why I had to stay there over night. Just awesome.



    Oh yeah, I also made a dangerous enemy: the lady with the food trays.

    I know the awful taste of the food at this hospital very well. It's barely edible even when you didn't have a radiation therapy in the not too ancient past. Nowadays, I wouldn't even look at it anymore. So, I brought two bags of liquid goo with me and just asked them for a dripper (infusion equipment). Which was fine, according to the nurse.

    The food tray lady arrived anyway, already for yesterday's lunch. Because I hadn't filled in the form, I got the standard non-vegetarian crap. Very appetizing to have something like that standing on the table next to you while you try to get some sleep.

    Well, it was a motivation to get up and shove this abomination away from the bed and out of smelling range.

    Later that day, when I just had napped off a bit, the food tray lady arrived with the food form, waved it around in front of my face and wanted me to fill it out. I told her to go away.

    So, she arrived not much later with yet another non-vegetarian and disgustingly smelling food tray with the dinner. I was awake enough to tell her to take it away this time, so no big harm done.

    At around 21:00, I actually turned hungry and used up a bag of liquid goo. I then had to fight with the night nurse that I could keep the dripping tube for breakfast next morning, because I only had brought one tube instead of two.

    Anyway, next morning, the food tray lady arrived yet once again. This time, she didn't just have some stinking bacon or something like that on the tray but also some extra corny full-grain buns and some coffee. I don't touch coffee if I can avoid it (I'm just addicted on tea), and so the day started with some nausea after a nose-full of that. I managed to tell her to go away though, so I didn't have to suffer the stench too long.

    Later that morning, I was angrily sitting around and waiting that the HNO bastards finally (2 hour delays are no delay at all in the eyes of the HNOs) found the time to see me for the release out of there, the food tray lady arrived again, wielding the food form for next week. She told me that I needed to fill out this form for the whole next week right NOW. I told her no.

    I don't think that we will ever become friends now.
    Updated 05-05-2012 at 17:52 by Lytha
  16. Lytha's Avatar
    Hm. I'm not supposed to speak for a week or so now, but of course I'm running some tests every now and then. (sighs with a voice, "hello" addressed to the cats, just testing the pitch range by emitting air through the half-closed lips (as I learned in my speech therapy sessions), ...).

    At the moment, I am very much afraid that this involuntary voice-lip-lifting has turned me into some sort of mickey mouse soprano. If you've listened to my Let's Play videos at some point in the past, then you know that I didn't have such a squeaky squeak voice before.

    I'm trying to stay calm about it and wait until it has healed, but of course this doesn't really work very well.

    And this just sucks so much. The night before this surgery, when the voice suddenly jumped back to "almost normal", there was such a massive relief and I felt as if a weight of several hundred kg had been lifted from my shoulders. And now we're back down to ground zero.

    It's always the same ****ing crap now. Sometimes it seems that the crap is starting to be less crappy, and -boom- we're back to worse than before. Ever since the 9th August of last year, really: "Oh, I can somewhat walk again now and maybe I'll be released soon as well!" - "Come with me, please. We found a metastasis in one of your lymphatic nodes and we're going to do another surgery on Thursday." *booooom*

    I've actually some lumps on my tummy now (where I inject the Heparin, so 99.999999% probability that this is an injection granulom and will disappear in a few weeks on its own), and I'm extremely reluctant to tell any doctor about that. I told my physician and she advised to ask the HNOs to do a sonography - well, you've read above how swell my stay at the HNO clinic was, so no way. (Besides, I'm not going to let a throat-nose-ear doctor aka HNO do a sonography of my tummy).

    If I'm telling an oncologist about it, they'll press the red alert button again and also launch sonographies. The MKGs might even go so far to ask for a MRT, depending on whom of them I tell about it.

    So... nah.

    Well, maybe I'll tell the MKGs on Wednesday about it anyway. Or not.

    Wednesday will be exhausting enough when the MKGs learn about my "I'm not going to the HNOs again and I don't give a crap about after-care for whatever they did to my vocal lips"-stance.
  17. Lytha's Avatar
    I've noticed for a while now that the hair in my neck is behaving oddly. Well, actually, it isn't. It's just short at the lowest part of the hairline of the back of my head. I've long hair, this area aside, and I didn't cut the hair there.

    So... I did lose some hair due to the chemotherapy and it's growing back now? Fine for me, really - I just don't understand why it has only happened at the far nape of my neck instead of on the whole head.

    Of course, not the whole skull was radiated as much as the throat, and that neck area probably counts as "throat" in the eyes of a radiation therapist. Still, I thought that radiated areas of the skin lose the ability to regrow hair (I won't be able to grow a full beard anymore, lol), and there are some cm of new hair now.

    Very weird.

    And it must have happened really stealthily, because I never noticed a bald spot there at all. I did notice that I was losing abnormally large quantities of hair while hairbrushing in this winter, but I attributed that to the massive weight loss.
  18. Lytha's Avatar
    Alright. I've learned more than I ever wanted to know about the anatomy of the throat in the past week. It's been... dramatic. Once again.

    It started out on Tuesday of last week with the speech therapist entering panic mode when she read the letter from the HNOs. Something utterly terrible must've been done to me and she suggested that I should shut up completely for a fortnight at the very least. And I should cancel all my other appointments (how so? by phoning them?). And she kept asking me questions even though she had told me to shut up. And she impressed me with her retard-alike phoning abilities. You know: when you want to phone someone at the clinic (or just about any doctor's hideout that I know of, really), then you shouldn't whine "nobody is answering" after the 2nd ringing and give up after the 4th.

    I was also impressed to see that her speech therapy & HNO books were from 1985, since I'm quite sure that things have changed in the art of medicine in the last 30ish years.

    Anyway, this was awesome.

    I carried the impression that "something even worse than I thought had been done to me during that panendoscopy" with me from that speech therapy; I broke into tears on the way to the bus stop, and so I decided that I needed my physician RIGHT NOW and ask her for help.

    So she did. She also hurried to the phone and gave me a show of competent phonecalling habits. She pulled the beeper number and the direct phone number of several of the involved HNOs out of the reluctant nurses' information storage brain cells. She wrote them on paper. She found out quickly that both of the suspects were in the surgery room for the whole day (or so they told her). And then she phoned another nearby HNO (not related to the clinic) and made an instant appointment for me there.

    Yeah. This HNO chick managed to do the Borg-tube-injection-into-my-nose (nasal laryngoscopy, I think it's called) in a manner that didn't cause me any waking or sleeping nightmares so far, and for the first time the rape impression of this procedure wasn't present. Seriously. I mean... you're sitting helplessly on that chair, can't move away, and some creep puts an object into one of your orifices. It also doesn't help that they tend to crawl almost onto my lap while doing the procedure. I think this is also the cause for my bad reaction to needles that are put into my veins.

    Anyway, she diagnozed no reason not to speak anymore at all - to the contrary, she encouraged me to speak. No surgical harm had been to the vocal folds, according to her. She saw an edema at the far back of the trachea. And she saw a paralyzed left vocal fold.

    Oh crap.

    Indeed.

    She suggested that I should get back up on the hill and in contact with one of the two HNOs who had done the panendoscopy to hear what they had actually done to me. ... I hadn't told this chick that I was mortally afraid of them up there.


    Yeah well. I started talking again, judging the HNO to be more competent than the speech therapist. The voice was terrible, but not aphonic much longer. I worked my 2 hours / day, I went to the tumor control at the MKGs and talked to the dude (he was understanding with the HNO issue of mine because I presented the underlying source of my problem (which is anxiety / fear), not my semi-rational other reasons and semi-lunatic ramblings.

    And he had a couple of suggestions for future HNO contacts:
    - there's another clinic with a bunch of HNOs here in town. They can do panendoscopies, too. (this leads to communication issues, because all the doctors in the clinic up on the hill share the same patient file on the same server; the other clinic wouldn't have access to that file.)
    - I could go to the MKG part of the clinic and the HNOs would only be allowed to give council, not do the surgeries on their own (this leads to the issue of HNOs being utterly mean to patients of the MKG due to whatever irrational reasons that they have. I've observed this on all the 3 MKG patients who were sent to the HNO for a council. Extremely long waiting times, extremely horrible prep talks before surgeries, etc.)
    - and a local HNO (like the chick I had been to on Tuesday) could look into the throat as well. (the problem here is that they can't do panendoscopies.)

    The problems with each of these suggestions I've found myself when thinking about them. They are the reason why I think that I need to do some sort of desensibilization therapy regarding the HNO building and the HNO freaks - it's just the most rational thing to keep going to the HNOs up on the hill.


    I also had a psychotherapy session and a bunch of activities of physiotherapists; so I really talked a lot.



    Anyway, I managed to get an appointment for today up there on the hill. My good friend also offered to accompany me.

    I started to be a nervous wreck on Sunday, so I really had a splendid first half of this week.

    The HNOs weren't aware of me being a primary MKG patient, so I only had to wait for about 1.5 hours instead of 4ish. The assistant doc, who had done the panendoscopy, did see me. Not the semi-chief doc, whom I loathe since November. That was fine, because this way, I could ask him if he had noticed a paralysis of the left vocal fold before the panendoscopy.

    I got a Borg-tube into my nose rather quickly, but I could ask him for some nose spray before it. That made it already less worse... a bit. It was also reassuring that my friend was sitting behind me so that I wasn't all alone and at the mercy of the creepy doctors. And I had a small plushy with me, who suffered a lot during this procedure because I pressed him really hard on the tummy.

    Today, the left vocal fold did move, but very reluctantly. Semi-paralysis.

    He explained that they had indeed done what the speech therapist had thought, but apparently they're not doing this anymore as back in 1985, so I should not keep a voice like this only because I did talk in the 10 days after the procedure.

    I shall wait another month now and if the voice isn't back by then, then the phoniatrists will become involved into this whole mess.
  19. Lytha's Avatar
    My problem with this whole sordid affair is that they went for something really precious to me - my voice; just about the only thing about me that I really liked. And that they have NOT been trustworthy in the past.

    Let's do a recap of the contacts with the HNOs.

    1st contact: 3th August 2011. Prep talk for the panendoscopy that was going to be done before the mega-surgery.

    What went wrong:
    - treatment suitable for a MKG patient: 4 hours waiting time, despite having an appointment and being there in time.
    - that ***** managed to give me the worst prep talk ever, presenting the theoretically possible problems of the panendoscopy as if they were going to be bound to happen. I actually suspected that they would do some of these on purpose to spite the MKGs.
    - the ***** also tried to make me really anxious because of the mega-surgery ("oh really, my prep talk was the worst? the one done by the MKGs should've been the worse, given by all the things that can go wrong there...")
    - oh yeah, and she told me that they wouldn't cover the gap in the tongue at all with a small tumor like mine (interesting, so then I would have quite a gap in the tongue now and probably have bled to death on the surgery table...), they wouldn't do a trach unless necessary (so that would've been done by annoyed emergency doctors in the intense care unit? great!), and anyway, with such a small tumor as mine I might as well just go back home and have nothing done with it.

    Yeah. Turns out the ***** was wrong.


    2nd contact: Around the 23th November 2011. They were asked by the MKGs to do a panendo with the extraction of some biopsy samples of those strange bobbles in the trach.

    What went wrong this time:
    - I was still somewhat on morphine at that time, had barely stopped taking it (despite still having somewhat of pain in the tongue). The morphine means that a lot of that stay with them is still a blur in my mind.
    - none of the surgeons bothered to visit me after the surgery to tell me what they had done. This is typical for the HNOs and totally atypical for the rest of the clinic.
    - too many Borg-tubes were stuffed into my nose there.
    - too many crazed creeps tried to rip out my tongue to have a look at the far back of my mouth/throat. It hurt. They sat on my lap while doing so.
    - I was sent to the diagnostics department in the ground floor and 3 ridiculous tests were done there:
    a) a test of my sense of taste. One month after the end of the radiation therapy. That the taste sense was totally screwed up at that time shouldn't have surprised anybody.
    b) an EKG was done. I don't know why. Because of the narcosis for the panendo? Was that really necessary?
    c) I still had a hole at the front of my throat. They made me do a lung capacity test. Good joke.
    - when they released me, the nasty evil semi-chief doc showed me as a mime what would happen if I coughed without pressing fingers to the freshly sewn up trach suture. Him doing that has become a standard ingredient for my waking nightmares of the following couple of months.
    - they sent a totally inexperienced noob at me to get some blood. She managed to destroy a vein on the back of my hand and she poked me so often and just about everywhere that the anestheticians were extremely angry because all the good veins were inaccessible.
    - oh, and the ***** from the 1st encounter was the doctor on duty on day #2 and #3 of that stay.

    Good times. I'm quite sure that some more things went wrong as well, but they're thankfully lost in the morphine blur.


    3rd contact: 4th May 2012. They were supposed to do a panendoscopy. Instead, they merrily did some surgical procedures on the vocal folds, which I never would've agreed with if they had told me about it before.



    Yeah. I don't think that the anxiety and fear did only grow up in my mind without any (semi-)rational and in fact real reasons for it.



    (edit: the whole lot of ******s in this update are the name-calling for this one specific female abomination that they've got.)
    Updated 17-05-2012 at 01:57 by Lytha
  20. Lytha's Avatar
    Hey.

    I got to say, I am feeling physically better now. For the first time in months, I am not afraid of working as before all of this anymore, though I don't know if I shouldn't widen my horizon some more (working more according to my qualification instead of what I was doing before). I also discovered some muscles in my upper arms - about the size of a small mouse, but better than before.

    I also discovered a speech therapist whom I don't know yet, but his voice sounded alright and his qualification actually matches my profile - contrary to the former speech therapist. I've looked her up, and she's really only qualified to work with children. For adults, she only learned how to deal with stuttering. Why the f she didn't admit that she wasn't qualified for me at all, I won't understand. (Probably she just wanted the money. *****.)

    The voice still sucks, and it was really obvious on Saturday. Sister and nephew were here in town and we went to some kids' adventure park. Amidst all the screeching children, I was essentially set to totally mute.

    Weight seems to have grown relatively stable now. It varies between ~57kg in the evening and ~55kg in the mornings. This is not according to my mad set of scales, but it's already re-calculated to the real weight (+2kg to what these scales say). That's a BMI of more than 18, so I am content. I am definitely not eating the recommended 2400(?) kcal every day, and the weight is stable, so I guess the diet therapists are somewhat mental and recommend more than really necessary.


    The cats are doing better, though Julian refused to eat his pills on his own for a couple of days now. Well, I can also throw them into his mouth and force him to swallow them down. Geordi gets some multi-vitamin pills now (with supposedly a relaxing effect for cats and dogs), and he indeed is growing hairs on his tummy and leg again. His fur is also more furry-licious than before and he seems to be more relaxed indeed.
    Updated 21-05-2012 at 12:03 by Lytha
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