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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. satenia's Avatar
    I would like to express my deepest sympathies and wish you all the best for your further diagnosis and therapy.
  2. upier's Avatar
    Holy ****, babes!
    All the best and keep us posted if you are up to it!
  3. Lytha's Avatar
    Thanks dudes. I've caught a flu somewhere recently (probably during one of the many visits in the clinic and at the various doctors), and I couldn't sleep last night. So today, I was just mostly aggressive. I gave the doctor the impression that I won't be a fun and obedient patient... but that's alright, IMHO. I think that it's my right to be cranky about the idea of getting a tube stuck through my bellybutton into my stomach (or where ever they plan to insert this.)

    I am really more upset about such trivialities now than about the diagnosis itself. That may be a bit abnormal.

    Anyway, I will talk more to the psycho-onkologist (psychologist specialized on talking to cancer patients), because I think that this will increase my compliance with the doctors.
  4. Nikhera's Avatar
    Nah, Lytha, it is perfectly normal to be worried about trivialities. That's what people do, because trivialities exist to annoy us when everything else is going good. And to have a big event happen so suddenly, well that can be hard for your mind to process.

    But do talk to the guy! Psychologists are good at making you feel better, and just understand what the hell is going on in your mind and why you're feeling the way you are. Don't fret about your emotions, they're all natural - just ride out, cuddle your cats, take advantage of the time you have with them.

    I hope the next few weeks will go well for you, and I hope all the procedures won't be too taxing on your energy :( My thoughts will be with you. *hug*
  5. Raye's Avatar
    Sorry to hear... I hope everything goes okay.
  6. Lytha's Avatar
    Well, alright. >50% mortality in the next 5 years (no matter what treatment they do); of which I am sure at least 25% if not more happen due to the radiation therapy. That explains why they don't seem to think that there's much of a reason to be concerned about breaking teeth falling out, or the radiation caries.

    Well well. Don't you sometimes think that human medicine is really on the wrong foot at the moment? Keeping everyone alive as long as possible instead of just letting them go with dignity when they want? They could offer assisted suicide, for instance ... instead of giving that radiation therapy torture.

    Yeah yeah, I shouldn't have looked up the mortality rate. Don't feel much worse now though. Perhaps even a bit better because it puts the annoyance factor of the funny little tidbits into another light.

    I never strived to become 80 years old and suffering from Alzheimer disease anyway, so what gives.
  7. Lytha's Avatar
    Oh and yeah... I know that the typical person with this type of cancer is a 60-70 y/o male, alcoholic and chain smoker with a knack for analphabetism.

    Seems that it can hit the 38 y/o females who have smoked 1 packet of cigarettes in their lives at 20ish, who have drunken perhaps 5l of booze in their lives (also around 20ish y/o) and who might have some spelling mistakes but are graduates from university. I don't know why I got it. There was a wound that didn't want to heal for some years (which I ignored, because it did cause no harm), and I am always very low on iron. I guess that that's my two pre-cancerous details in my medical history in this regard. Oh yeah, and I grew up around a nuclear power plant thing. Let's blame that.
  8. Lytha's Avatar
    Being run down by a bus would be faster and more painless, wouldn't it?

    ... oh, here we go again.


    Greatest worry at the moment: when I'm in the clinic next week and have one of these crying fits, will they then just throw some sedativa at me? 5-6 days = 2.5 crying fits at my current rate, and having to hide in the toilet because of fear of "them"... that's complete crap. And yeah, there's a hint of paranoia as well, and I am aware of it.

    So far, everyone is oh so sensitive and empathic and understanding about whatever I say and do (well, not my family and friends, for talking too much about busses and high bridges to them), but I'm still afraid of the nurses and doctors. That's because they've got the drugs and the needles and I just hate them in a prophylactic kind of way or whatever.



    Anyway, going to shop now (the cats need food) and then I'm going to spend the day in bed. Whatever happens, I am sure that I should get rid of that cold before they start the erm treatment.
  9. upier's Avatar
    *shakes fist at the power plant*

    Baby steps babes, baby steps.
    There's no point in worrying about the big picture because it's composed of so many things, so tackling the smaller things is the way to go. Plus making those things work should give you a bit of a boost. And if you don't make them work - it's not the end of the world because they are just little things.

    Hope the cold gets better!
  10. Lytha's Avatar
    Oh, I hope that too! It's worse than the tumor right now. Luckily, I already bought some sage leaf tea (for the tongue, but I am sure that it'll clean up the nose as well.)

    The advantage about knowing the mortality rate is that things like the tube that they'll put into my stomach next week doesn't look *so* bad anymore. Also, I can then do some Borg or Jem'Hadar impressions with it.

    Teeth breaking off still is a bad thing though. That's phobia material for me. Whenever I had a nightmare about teeth I woke up screaming and panting. :/
  11. upier's Avatar
    Plus the cold is actually something you can fix on your own. As I said, small goals.

    And I am also one of those scary cats - I used to have this insane fear of needles, but that's gotten better in the last year. I used to almost faint whenever I needed to give blood. And then I just slowly got over it by looking at the other side and breathing deeply. I am not a perfect patient, but at least I am not freaking out.
    As for the worries about teeth:
    http://www.youtube.com/watch?v=NiOaWVQd1P4
    But on a more serious note - that freaks me out also. And to make it worse - it's nothing REALLY bad about losing your teeth. It's more of an inconvenience than anything else.
    Guess it just goes to show how vain we are.
    *catches a reflection of oneself in the monitor and fixes hair*
  12. Lytha's Avatar
    Nice video. I had a nightmare once doing me something similar to what he's doing there. bleargh.

    With needles... hehe. I've a small horror story for you then. I had a CT (computer tomography, really sexy pics of my torso, throat and skull) done on Tuesday this week. She went for the vein in the right arm, because I hadn't drunk a lot of water that morning and all the veins were crap for her purposes. Then she started to inject that radioactive goo into it, and the needle plopped right out of the vein, into the tissue. Or maybe the vein kicked the needle out all by itself. Or something like that. That hurt like something awful.

    And then the girl decided to first insert the 2nd needle into my left hand (eep; but as I said, my veins were crap that morning) while leaving the 1st one doing whatever it was doing for some minutes (ouch, fix it, fix it, fix it!!)

    Yeah well, I'm fine with needles. I need to go for a few seconds into a mental lala-land shortly before they put the needle into the vein, but afterwards I am fine with them and actually don't mind watching the blood pour out or whatever. I even find the bruisings that you sometimes get after badly done injections of radioactive goo for CTs or Szintigraphies rather more interesting than gross.

    Let me tell you though: it's not fun to get a needle into the tongue. I had that ... "pleasure" when the doc took the biopsy sample some weeks ago. I still don't understand why he needed to do 3 stitches then for that small 1x1x5mm sample, but I guess that's the reason why tongue surgeries are those 10-20 hour adventures.
    Updated 29-07-2011 at 23:29 by Lytha
  13. upier's Avatar
    Sweet baby Jesus, I almost fainted reading that.
    Anything tongue related would have been a nightmare to me honestly. No idea why, but I just can't deal with things being showed in my mouth. Well, certain ones, at least!
    Seriously, I almost throw up each time I am cleaning my teeth and don't even get me started on how my dentist-visits turn out. It's a good visit when I don't almost choke to death. >.>

    So you'll be in a complete media blackout next week?
  14. Lytha's Avatar
    No. I will take a laptop with me and only hand it over to the nurses or the locker room when they intend to knock me out for a couple of hours. The doc that specializes for throat, nose and ears is supposed to look at the interiour of my throat's cavities, and I suppose that this might be a full blown narcosis, from what I've been told last Thursday. And a gastroenterologist (the dude who specializes on the stomach and colon and everything in between) is supposed to look into me, probably from both ends... that's another 1-2 hours of being on a drug trip for me. And I don't know how they place that Borg tube into the stomach. Might be another drug trip.

    From that laptop, I will be online at amazing connection speeds. But that's better than nothing.


    The CT pics really were sexy though. You could do all sorts of things with them, because they were essentially in 3D, but when I looked at them here on my computer when I had them, I was mostly just fascinated by the fact that you could see the nipples, some funny skull-like shadow shapes near "that thing in between my lungs" (reminded me of ... Doom? Quake? Heretics? something like that), how the eyes looked like including the nerve and muscles that hold them, and about all these funny air-filled holes in the skull.

    That doc did not find any metastases in lung, lymph nodes or brain, by the way. I forgot to write that in this blog here yet, but it's sort of the only good news there has been in the last couple of weeks. So it's kind of important to say.



    Going to shop the stuff that I forgot yesterday, some more cat food, and some fresh croissants. Later today, we're going to kill some Varroa monsters (mites) in the bee hives by treating them with some acid - this sounds so interesting that I simply can't just miss out on it.

    Tomorrow, my parents will arrive at some point and we start the cat transfer to my friend (who'll be a cat-sitter next week). Because a last night here without my two little murdering furry bastards would be a nightmare for me, they themselves will be sent to this friend on Monday morning, just before I go and hit the clinic.
    Updated 30-07-2011 at 09:14 by Lytha
  15. Lytha's Avatar
    I've slowly started to build a pile of things that I need to bring with me to the clinic. And I've written lists, both for things to do today, and for cats' luggage, and mine.

    Well, and now Geordi started to toss that pile all over the place. Got to love these cats.

    The little bastard even just threw the >500gr glass bottle with chlorhexidine (* just calling it randomly with a random name; it's stuff to clean the mouth and tongue with) around, he's so determined to clean up the place.



    Oh... my sister, who works in psychotherapy (from the physician's point of view, but without the pills and drugs that psychiatrists like to give to everyone; not from the psychologist's background) tells me resolutely that they won't toss me into the psychiatry or give me antidepressiva or sedativa for having crying fits every 2 days. They never have people like that in the psychosomatic / psychiatric clinics; and they can't just drug you up in a normal clinic, apparently.

    But I should bring this issue forth openly right away so that the roomie knows and won't press the button to call the nurse. And name-dropping the psycho-onkologist every once in a while might be a good idea as well. I wanted to talk with her last Friday anyway, but she's only in her office from monday to thursday.
    Updated 30-07-2011 at 11:34 by Lytha
  16. Lytha's Avatar
    There are some more precancerous tidbits about me.

    My grandfather (dad of my dad) actually died from skin cancer; my dad had some years ago a malenoma (well, a skin cancer) x-ray radiated away. Of course, both were male and >75 years old when they got it, while I'm still female and still half as old. But the cancer gene seems to be present in my blood line.

    Let's just hope that my brother will run immediately to the appropriate doctor specialist when he's got a change of skin tissue structure when he's at that critical age.
  17. Lytha's Avatar
    Also, 50% mortality is average for all of the patients, all age groups. While I wouldn't call myself "young" anymore, I'm not yet 80 y/o and about to succumb to whatever else I would have at that time.

    If a glass is 50% full, do you call it "mortality" or "remission"? Ah well, I am rambling in a dissociative manner now.

    Anyway, let's go for the "let's join another minority" approach. It's less likely to recover from cancer than to die from it, so let's go for the unlikely option. (If some anesthetician goes for the "let's do the unlikely thing and hurt her vocal chords while doing an intubation" approach, I'm going to kill him though before the end. Oh yeah. They better watch out.) *



    * arriving at "hysterical euphoric mania" mood now, apparently. Bipolar depressive disorder must be something awful to have.
    Updated 30-07-2011 at 11:29 by Lytha
  18. Nikhera's Avatar
    It's hard to gauge subtext from just writing, but from what I'm reading you're actually being very down to earth and levelheaded about your situation. Very aware of the emotions you're feeling...meta, as it were.

    And at this point, I don't think my word will be as assuring as your sister's may be, but whatever you're feeling, your doctors will have dealt with that and way worse, too. ;) But I don't think crying fits are an excuse to drug you. We're people. They are aware of what you must be feeling, they wouldn't forcefully drug you up.

    And sometimes, we just win the mutation lottery...sometimes we don't. My grandfather died of stomach cancer, my grandmother, his wife, had lung cancer, and my grandpa from my mom's side had intestinal cancer. So I know either my parents or my siblings will strike that someday too. :/ What's important, is the good news you mentioned: no metastasis. That's what makes it truly brutal. And I'm glad to hear that and I hope the upcoming tests will reveal the same.
  19. Lytha's Avatar
    Yeah, I tend to be rational and aware of my emotions, which doesn't mean that I wouldn't act irrationally on them quite a bit. Might be a result from the esoteric adventures from my not all too troubled youth years, you know, meditation and "find your inner archetypes" kind of crap. Actually, the meditation thing was not too bad of an idea, it helps to hit the aforementioned "lala-land" that I need to be in when I get poked with needles.

    I am not a lawyer, so I am really not sure if they would be allowed to drug you up in a normal clinic against your will or not. The place I am going to next week is a part of the normal university clinic; the psychiatry and neurology is 2 bus stops further along the road. Psychiatry is closer to the radiology therapy building and to the chapel thing for the religious freaks than the building I'll spend this first week in.

    I'm just hoping now that the radiation therapy will be an ambulant sort of 3 weeks of fun. With the Borg tube in my stomach, I should be fine, shouldn't I? As long as they prescribe me something that I can inject into it directly, I mean. There wouldn't be any point in having me stay there, I hope.

    I just hate clinics, that's the problem there. Annoying people, you get woken up at annoying times of the morning, then you get disgusting food at annoying times of the day, and the roomies are probably annoying too. And it's annoying to have to keep an eye on the laptop at all times. The most annoying thing is that this would mean another separation from my cats; and erm dudes, the cats are the best therapeutic effect I could think of right now. A cat biting me gently into the toes for crying too loudly, or a purring cat on the lap calming me down... that's awesome and should count as psychotherapy.

    But noooo... "pets aren't allowed in the clinic", my arse. *growl* Annoying, as I said.


    I'm sorry about your family, Nikhera. Looks like the cancer gene is running in your bloodline as well.
    Updated 30-07-2011 at 23:52 by Lytha
  20. Lytha's Avatar
    My friends and family are acting oddly at the moment as well. Maybe I should explain: When I looked at the tongue about 1 month ago and the alarms went off in my head at that sight, I informed my sister (the psycho-doc) and my best friend. My sister directed me at the correct doctor I should go with that thing to at the nearest opportunity (the dentist doctor, that was). These two basically know for 2-3 weeks longer that some crap might hit the fan, 2-3 weeks longer than the rest of the family and friends.

    I kept it "secret" to avoid becoming the target of that inappropriate "extreme empathy" as I am receiving now from every physician's front desk lady and stuff before I knew that it really was what I suspected. My parents for instance, would've sent that kind of "extreme empathy" into my direction during that waiting time. Not to receive that, helped me quite a bit through these 2-3 weeks of uncertainity but worry.

    There's a weird result now though: while my sister and my buddy are emotionally adequate to myself now (i.e. they are sometimes *****ing at me and they inform me that they're suffering too, and that's alright, really), the rest of the family is in the denial ("maybe it isn't cancer at all"... duh?) and in the "oooh, please don't cry"-stage. Also in the "I must not tell her that it sucks for me now as well"-stage.

    They've some catching up to do, because this is a bit weird and just as inappropriate as their most likely reaction during the waiting time would've been.

    With my brother, it's going to be most difficult. He left country for a holiday vacation with his kids and wife, and when he returns on the 16th, I'll be hopefully already in radiation therapy. "So, it's not as bad as you thought, right?" - "Nah, my mouth just feels like some lunatic poured acid into it, it's fine!"...




    I also think that oncologists learn some retarded stuff in their lectures. Yeah, statistics like the mortality rates are crap to know, but by knowing these, the compliance with the therapy increases.

    Same with the first descriptions that I got about radiation therapy effects on the mouth at first ("oh, it's not too bad, really. Just like when you've sucked on too many sour sweet drops"). I inquired more and further and asked the same person until she told me the truth ("well, after 1-2 weeks, it's sort of hell for the patients"), and now I can cope with that.

    Knowledge > happy bliss.

    Oncologists are morons if they think otherwise.
    Updated 31-07-2011 at 00:20 by Lytha
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