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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.

    I'm developing a PTSD at the moment, unless I am very much mistaken. I'd say that I have reason enough to do that - I mean... think about it. People get PTSD for simpler stuff than I've been going through since start of July of this year. I've been in fear of death and mutilation, I have been mutilated, poisoned, shot with photons, had that mask hold me forcefully onto the table for 31 times, I've had an open trachea for 3 frigging months now... yeah well. So I now need some decent psychotherapist as well, it looks like. Will talk to the psycho-oncologist in a while about it. She should be able to recommend someone.


    Anyway.

    News.

    Right after the last radiation, I went into the shower and didn't leave it for a couple of hours. I only can shower while sitting and I only can wash my (long) hair in the tedious overhead manner instead of the normal way, but that doesn't mean that I couldn't sit down and shower for hours. I wanted to wash the crap feeling from the "therapies" away. Didn't really work, but oh well.

    When I left the shower, the phone rang. It was the radiation therapist with news from the MRT.

    1.) yeah, there's a massive swelling in the throat, just on top of the larynge, obstructing the vocal cords. Hence the croaky voice. She told me not to worry.

    2.) There was a change in the blood vessel MRT since last time. This one they couldn't explain by "radiation damage, will go away", so she made me an appointment with the neurologists. Excellent news: I am indeed going to get to see the psychiatric ward of the clinic now. Well, the neurology at least, but it's the same building. Awesome. (GRRRRR)

    This might be because the thrombosis in my right carotis vein (or is it the other one?) seems to have more or less gone by now; at least the veins in the upper right arm aren't as thick anymore now. The radiation therapist was happy to hear about this thrombosis, because it offers a possible explanation for this abnormality in the MRT, but she insists that I go and have a neurologist look at me anyway. Just awesome.

    No, it's supposedly not a metastasis. But I am still of course worried about that. Brain tumors would be the really ****ty way to go. I kind of like my brain as it is, you see.


    Yeah anyway... these news made me quite upset, so I started to erm... "trockenkotzen"... go through the motions of throwing up, but nothing comes out. It became a problem, so I went to my friends, the oncologists and got some MCP infusion, which didn't help. I think the trockenkotzen is because of the swelling in the throat and mouth and tongue and because of the plaster on the trach - all of these ingredients cause puking impulses.

    I cried while there with the oncologists, and they can handle such things better than MKGs could. Nobody told me to contact the psycho-oncologist at once; nobody offered some valium. They just let me have my crying fit and tried to help.

    They're all nuts, but at least they can handle emotional patients who would dare to show their nerves in the presence of the staff.



    So, then I reduced the morphine from 2x20mg back down to 2x10mg in the following days. I'm now on 1x10mg (none for the night), and it seems to be sufficient.

    But the tongue hurt like hell last week. I refused to talk for about a whole week; then, on Monday of this week, the tongue stopped hurting like hell, but instead of that, the voice wasn't just croaky anymore. It was completely gone.

    It's sort of back now, most of the time. Back to croaky. I could phone with the radiation therapist at least and ask her my 4 questions about the appointment at the neurology tomorrow and about the croaky voice.



    Some good news on the trach front: there's lots of brown goo now again, which means that it's trying to heal. But at the same time, I am coughing an extreme lot now though and this probably does not help the healing very much. Still... the ****er is trying to heal. This is good.

    Also, did I mention yet that I am shedding skin on the front and sides of the throat now? Looks horrible. Looks like Mr. Morden in Babylon 5, start of season 4. You know, the scene where he's in Londo's room and pulling parts of the dead skin from his hands off and dropping them on the floor. I am trying to avoid doing the latter in public, because I am sure that it's VERY gross.

    Children and adults have been staring at my throat like I'm a ghost during the last week. Children stared intensely, but adults also did it.



    All that aside, I've finished 1 sweater (it's gorgeous, IMHO), and started working on another one. This time with a nice lace pattern and fluffier wool. I also purchased enough wool for 3 more pairs of socks or legwarmers. And I purchased a pair of awesome shoes with compartments for each single toe. It's awesome to walk around in these.
  2. Nikhera's Avatar
    Sweater! May I request pictures? :D

    My mom is nearly finished making one for me. She got the pattern out of Burda. :D The wool is light grey and it's all chunky and stuff. And the sleeves are super loose and long on purpose.

    I have socks with separate toes. Toe socks! Everyone says getting socks for Christmas sucks, but I sure love mine 8D They are quite comfy, with the kind of freedom you would never get in regular socks.

    And when I was saying that I can't knit, it's just something about my brain. Like, literally, I am incapable of creating such a motion with my hands, or interpreting the diagram of how to do it. My mom was actually able to knit left-handed after a few minutes of concentration, but I wasn't, lol. Maybe I should try again. Knitting is a good skill to have.

    Anyhow!

    PTSD is plausible. Developing a life-threatening illness, never mind going through medieval torture of a treatment, is incredibly traumatic D: Psycho-oncologist talk sounds like a solid plan.

    The term you are looking for, with the throwing up sensation, is called dry-heaving. It is gross and sucky D:<

    I hope you hear good news from neurology! <3

    Aaaaand to end this incredibly disjointed post, hey, at least you had an authentic "attempted murder victim" scar for Halloween. Still, people are rude. XD
  3. Lytha's Avatar
    Well, mostly the throat gets the stares because the top part of the epidermis has gone all blackish and is flaking off; the skin below is red (and now, after a few days of being exposed to the air, also flaking off). I am normally very pale, so it's an eye-catcher. A disgusting one.

    The neurologist was cute.

    Very cute, actually.


    Uhm, and he was quite confused at first, why I was there. Then he didn't see the "small embolia" in the MRT pictures. So, he just let me do some funny movements and walk up and down a bit and tickled my feet with something. He also hit my ellbows and knees with a little hammer. Quite a few times, actually, because my reflexes seemed to be a bit abnormal.

    Then he went to the neurologists who specialize in radiology and asked them what they thought about the MRT pictures, and they were not sure if that small bright dot wasn't actually just a glitch.

    So, next MRT should have pictures of the brain with a contrast enhancer substance, and be done in the next few months. That is all.
  4. Qin Li's Avatar
    There is certainly a lot of procedures and treatments, compared to once upon a time when the healer would prescribe herbs and ointments.

    The entire experience sounds daunting. It helps to keep a positive and courageous attitude as you have.

    If I may, with all that's going on, I'd say that people staring would be pretty low, if not the last thing on my mind. I hope you're not troubled by that.
  5. Lytha's Avatar
    "Herbs and ointments" is reminding me of one of these doctor encounters that I had in the last months.

    I don't know if I mentioned it here, but I had to go to an oncologist specialist this quarter of the year to get papers for the oncology ambulance where the chemo treatment and now the weekly checkups are being done. I randomly selected one by googling for it, based on the proximity of his hideout to the clinic. Turned out that he's a naturopath, and mostly working as a palliative oncologist.

    Before you get the wrong impression: I am normally all for treating non-diseases like flus and colds and such with placebos like homeopathy and herbs and ointments; patients may profit from the placebo effect, and there's really no harm done.

    However, I don't agree that real-diseases, such as broken bones or cancer should be treated with the kind of placebos that naturopaths offer. Adding them to the mix of stuff in palliative care is also dubious; while the placebo effect may be effective for some dieing patients, it reeks of "getting money out of the desperate, helpless and dieing people".

    This guy offers things like acupuncture. He's "treating" cancer by heating it up mildly and comfortably. He's injecting extracts of mistletoe. He has a diet specialist specialised in particular in traditional chinese medicine, i.e. this person will tell you how to "cure cancer" by dieting according to the yin and yang.

    I find all of this very dubious. So do the insurances here, by the way. In other words, everyone of these really ill patients has to pay for this stuff on their own.

    Reeks of quackery.


    Anyway, I just wanted the papers for the insurance, nothing more. He wanted to see me once though before filling out the forms, and he took the opportunity to jump at me with an offer about mistletoe injections. Three things he told me about these:

    (a) these injections are good against cancer cells, and strengthening the immune system
    (b) no negative side-effects at all! (sounds like placebo, all right)
    (c) insurance will pay for this.

    I didn't agree to anything and once back home, I googled it. The last two of his statements are just plain wrong. There are quite serious side-effects, and no insurance will pay for this, unless it's some specific cancer and even then only for palliative care. The first of his statements has no scientific proof at all; or rather: studies didn't show an effect bigger than you'd expect from a placebo.


    Not really a point to this anecdote. Just be careful when you're dealing with doctors who treat stuff with herbs and ointments these days, if you've got a real-disease.

    Being careful when dealing with doctors from the traditional medicine also doesn't hurt though; or at least watching what they're doing. The oncologists did approve of being watched by the patients, by the way: they had no issues with patients reading their own files, they actually encouraged me whenever I piped in during the chemo sessions with investigative questions, criticism or whatever.

    If they wouldn't deal with anything by instinctively prescribing some heavy drugs, they'd be the most awesome type of doctors I've encountered so far. And luckily, they're awesome enough to suppress that instinct of theirs if the patient doesn't want the heavy drugs.
    Updated 03-11-2011 at 23:37 by Lytha
  6. Lytha's Avatar
    Rehab starts on the 15th November. Time to go nuts and do some last-minute shopping and doctor appointment-rescheduling.

    Oh, also the PEG causes intense fun now, whenever I cough (I cough a lot), whenever I'm going for a dump on the toilet, and also probably whenever I laugh (haven't laughed in weeks though, so I am not sure about that.) I was at the gastro-enterologists today because of it and received some stuff, shall now wait a couple of days to see if the pain goes away with the pills or not. Thanks to the rehab, I'll have to reduce the waiting time until I decide that I'd rather have another enterological inspection of the thing until the end of this week.

    I don't know if I can even wait that long; I'm screaming because of pain whenever I had another coughing fit.
  7. Lytha's Avatar
    Some things:

    - Smell is returning, and quite weirdly so. You see, when I am walking into a cloud of smell, then the first nosefull gives an extreme sensation. It's like a sledgehammer into the face (without the pain; I mean the suddenness and extremity of the sensation).

    For instance, I was walking through town a few days ago, hunting for a new pair of shoes. There was one of these mobile crépe seller carts and the smell was overwhelming at first.

    There was also, a while later, some garbage men working at an open sewer hole, which was also very overwhelming, but less nice.


    - Taste is still completely gone though, so I refuse to eat via the mouth for another while.


    - I'm borderlining depression at the moment, once again. Thinking too much about death. Trying to keep it a bit away as a topic when talking with friends and family, this time. They're all upset enough as it is.


    - Yeah, the PEG issues. After I spent a wonderful Monday with them, screaming of pain with every single coughing fit, it became slightly better. But it still hurts like hell. Especially when mobilizing the tube. There are some positions of the tube and the bumpers that mean almost no pain (esp. in addition to the Novalgin), but it still does hurt.

    So, I've just received an appointment with the gastroenterologists for tomorrow morning, 8:30, for an endoscopy.

    I also received a reminder that if I get fever, I shall hasten immediately to the clinic up on the hill; to the surgical ambulance. Good to know, because otherwise I would've rushed to the oncologists with fever.


    ... wouldn't "death because of PEG issues" be hilarious now?

    ... doing it again. Grrr.
  8. Lytha's Avatar
    Yesterday was a grand day.

    Firstly, whenever I drink water (just plain tap water, ok?), it tastes sour now. Very intensely so, it's like a taste explosion with every first sip. While this is nice, it is wrong. Clear water does not taste sour. Anyway, it's a step forward from "no sense of taste at all anymore".


    Secondly, I might have mentioned the PEG issues already? Last Monday, for instance, I had a lot of coughing fits, and each one ended in me screaming because the PEG hurt. Awesome. Due to the rehab next week, I decided on Thursday that I should contact the gastroenterologists again to have checked out the PEG before I went to rehab - the rehab clinic does not have gastroenterologists amongst their staff, and it's in the middle of nowhere, utter north of my country. If emergencies would happen there, they'd probably need to send me off to one of the two slightly bigger towns up there. And, erm, a PEG can cause quite funny and quite lethal emergencies, if you collect pus between stomach and outer skin and it breaks through into the abdomen cavity.

    So, Friday began with an endoscopy of the stomach. I was on a Dormicum trip during that (must've drooled (unlikely) or coughed or puked or cried a lot during it though, because there was a wet mess below my face when I woke up), but the gastro dude took pictures of something quite scary happening inside of my stomach: white pus flowing through the PEG hole, outside of the PEG tube. This gave him quite the "oh ****" momentum and I wasn sent forth to the emergency unit of the clinic, the place where the ER surgeons dwell. None of them looked like George Clooney though. Aw man.

    These dudes decided that they wanted a CT done.

    So, while I went through a very cute information chat about CTs with one of the very wet-eared doctors that this clinic often has (it's an university clinic, you see), the radiologists decided that they better do a sonography first.

    This sono did show some sort of liquid around the PEG tube, a whole 1.6 x 1.6 x 3.5 cm of it. The source of the pain, I guess.

    Very dramatic, and I went to get the CT done next. The 34th in the last couple of months (and in my entire life).

    But this time was different than most of the other times: I didn't have a mask on my face, so I could observe the machine while it was working. Awesome. Not much to see though.

    I was also put into something borderlining a stress position, with the arms stretched out far behind my head, so that breathing became difficult. And this caused me to react in a very amusing way to the contrast enhancing goo that they injected into me halfway into the procedure. First, my shoulder went cold (this is normal). Then, it felt like I was peeing into my pants. While I was trying to determine if I was really doing that just there, my face grew hot. And then I couldn't breathe anymore.

    Quite amusingly, this was exactly the moment when the assistant told me via speaker to "breathe in deeply and hold it". So, I was struggling for air, had a coughing fit instantly, and this led to me puking. Some of it went onto the machine.

    They were really quite hard-nosed badasses and kept finishing the CT anyway before rushing in and putting a trashbin below my face.

    What I saw from the vomit, it didn't look like just stomach acid and saliva. It might've been pus with stomach acid though. Or liquid goo (PEG food) and some stomach acid.

    What I'm trying to say here is that it might've been the liquid that the gastro had photographed, the sono revealed and that had been causing me plenty of pain.


    I went back to the ER, after they made me sit around and wait for half an hour to see if I developed an anaphylactic shock or somesuch.

    The ER dudes were then the ones who told me that the CT had shown NOTHING at all, no liquids, no nothing near the PEG tube.

    Also, the pain was back to very, very bearable, if still present at all.

    So, in other words: almost 12 hours of diagnosis and the result was that nothing except more Novalgin is to be done now at all.


    I'm supposed to watch my temperature and to watch out for intense, massive pain in the abdomen now, and then rush to the ER again.

    So, rehab is still on schedule.
    Updated 04-12-2011 at 22:41 by Lytha
  9. Lytha's Avatar
    Uhm.

    Suspicious lump in the dissected neck area, needs to be checked for relapse. Via MRT, first.


    Don't want to say much more; I'm going to hit a pillow or something. Back to "mix of crying fits and aggression"... 've been there before, though I don't quite recall when? Ah, when Wenghoever told me that they would cut me open again because of the lymph node metastasis, wasn't it?


    I dunno. I won't let them put me into radiation therapy again, ever, so why bother checking for relapses.... **** it.




    Oh, just one thing.

    I had just returned back into the waiting room, after a crying fit in the toilet. Once back, I put me feet up on the chair (it wasn't a plush, expensive or cushioned chair, so no harm done) to get into the fetal position.

    Of course, there were other people in this waiting room. For instance, some old chick with a fancy hat and a pretty jacket. She glared at me.

    I noticed, and glared back, wiping my eyes some more with the tissue paper.

    She continued to glare.

    I rolled my eyes at her and stared back.

    "And the next person who sits down there gets dirty trousers!"
    "Terrible, indeed."
    "Yes!"
    "Oh. Drama."
    "You look like you're actually an adult, but apparently, you're not."
    "You know, I wish that you'd get what I have. Then we could all see how you act then."
    "PAH!"
    "*****."

    She left not much later, in an enraged fashion, probably to complain about me somewhere.


    Wouldn't it be great to have something like Plague Signet or Plague Touch... or Plague Infusion (I wouldn't want to touch a ***** like her) in real life? But then, I would've used it on some smoking bystander already.
    Updated 14-11-2011 at 16:15 by Lytha
  10. Lytha's Avatar
    Drama. I guess I'm developing some sort of hysteria concerning the PEG now; but alright, it hurt like hell about 10 days ago. Now the skin around the tube is red and I discovered a blister about 4 hours ago.

    So I phoned the oncologists (this lady was very confused as of why I phoned them instead of any other department), then the ER room, where I was told that yes, I should hurl my arse over to them immediately. Red skin, pain, blisters are apparently not good.

    Anyway, more bloodletting.

    Got to know another ER doc and another gastroenterologist (or maybe just an internist). Apparently, the red skin, pain and the blister was nothing to worry about. (duh.)... well, at least, as long as the blood values aren't showing clear signs of a funny infection and as long as there's no fever.

    This guy was quite a bit upset that I didn't know who of the departments was supposed to coordinate my case though, so he and I decided that the oncologists should be the ones, and the boss doc of that clinic, too.

    You see, one of the assistant docs of that clinic had merrily decided that he didn't want to be the one to coordinate my case and that the normal physician should do it. GREAT IDEA, since she has no access to my data file stored on the clinic's intranet. GREAT IDEA, because she has absolutely no clue about cancer, hadn't seen a PEG until I started to show her mine ("no, I am not going to look at your PEG now!!!"), probably has never seen a port yet, and doesn't know where to find an oecotrophologist, or where to get the papers to start a rehab,... or all the other things that oncologists just do.

    If I had an oncologist doctor outside of the clinic, I'd be somewhat inclined to call him my personal coordinator of my case (even though he has no access to the data file on the clinic's computer), but I am not going to that naturopath again.



    Yeah. Tomorrow, the MRT will be done. I need to ask my physician for the current "crea" value of my blood sample from Monday. Anyway, maybe I'll know in 12 hours already if the cancer is back or not. Else I'll hopefully know more on Friday - I'll go to the MKGs then, as he said, and ask for an appointment with the oncologists, too.



    ER doc: "How much liquid do you consume at the moment via the PEG?"
    me: "Hm... not much. Am I dehydrated?"
    "yes, that's why we're poking around in the 3rd vein of yours now and still not getting blood"
    "Oh well..."
    "So, how much?"
    "I don't know, maybe 1l?"
    "Oh, that's not enough, really. What's the problem? Sickness?"
    "The problem is that I really don't give a **** about anything anymore at the moment."
    "..."




    55.5kg, trach still open, throat still shedding skin (and I'm so not going to touch it now, because I-frigging-don't-touch-my-frigging-cancer-lumps), mouth dry again, down to 1000 kcal/day, have consumed some tomato soup today and it worked (didn't even taste all horrible), extremely depressed due to the "potential relapse" mess.

    Have been crying a lot, thought about death in apparently alarming ways (my sister was extremely upset after I hit her with an email loaded with some small part of my emotional baggage), also been thinking about how I'd refuse treatments after the relapse is a fact instead of a potential worst case.

    I've still my bags packed ready for rehab, so there's either a small part of optimism or just plain "I can't be bothered to unpack the bags now"? Whatever. I probably should get into contact with that psychotherapist really fast.
    Updated 17-11-2011 at 01:27 by Lytha
  11. Lytha's Avatar
    Well. MRT apparently revealed nothing (did it really only take photos of me once per 1cm?), so it'll be totally up to the MKGs tomorrow. Awesome.

    PEG revealed a lot of pus this morning though, about 1-3 cm³ of the stuff. So, I was back at the ER. And if it hadn't been for a really thick gastroenterologist who refused to listen to me completely, the stupid thing would've been removed by now.
  12. Lytha's Avatar
    Ah, I need to blog this here as well.

    I checked out the CD of the MRT here on my computer, and I found that lump. It did show up as a black spot, but it was clearly visible. Also, there's a much more worrying lump in the trachea, just above the vocal cords.

    So, anyway, on Friday, I had a sono done on the suspicious lump. And as I expected after my glances at the MRT shots, it was indeed the rest of the vein that was removed during the total neck dissection of the left side of my throat. There's a thrombosis in the stump, and that is the lump. Yucky, but nothing to worry about at all.

    The other lump is worrying indeed though, and I was sent to the throat-nose-ear doctors at the clinic, let's abbreviate them as HNOs. After the usual waiting time that they seem to have as a special gift for patients coming from the MKG guys, I had an encounter with one of the HNOs.

    These are creepy fellows. All these pointy instruments lying next to the extremely uncomfortable chair... and she actually had a small tube device with a spotlight on front, she had somehow put this infront of her right eye and poked this tube into my left nostril to get a topside view of the lump. Waaah. Very much like a Borg-drone doing creepy stuff.

    Anyway, next Wednesday, a biopsy of this lump will be taken. This is a case for another full narcosis (4th of this year).

    I can only hope that it is not malign.


    Oh yeah, about the size of this lump: on some shots of the MRT, this lump had filled about 80% of the trachea. I don't know how large the diameter of the trachea is at this point, so I don't have any estimation about how much it is in cm.
  13. Lytha's Avatar
    OOOH, I need to contact the psycho-oncologist and tell her that I'm in the clinic the next couple of days. Then she can visit me perhaps, even though I guess that I'll be rather busy in the mornings - they'll need to instruct me about the risks of a full narcosis and of the procedures; they'll need to do the surgery; and I'll be busy packing my stuff because I'm about to get kicked out again. That should be the schedule for the next 3 mornings, in this order, I hope.

    Well, let's just hope for someone pretty amongst the HNO staff, else it'll be boring.

    And a less extreme borderliner personality or otherwise neurotic person in the other bed of the room, pwetty pwease.



    I also had a strange encounter today, while waiting for the fluoride treatment of my teeth. The waiting room was bursting with people waiting, and the granny next to me initiated conversation with me. The reasons were many: I was knitting, and this motivates grannies very often to say something about it, and she (as it turned out to) had an insatiable need to babble.

    She was also speaking in a very, very weird manner. No, I am not talking about articulation or anything, but it was almost as if she expected me to be a telepath or to know her so well that I'd understand half-finished sentences.

    "You know, in that uhm... small village, yes? There is a door of some sorts, right? And well, I then... Yes, wasn't that awful? My mouth afterwards was always... right?"

    I thought that this was utterly bizarre, so I tried to understand at least a little bit of what she was trying to tell me. I didn't get it though, most of the time.

    What I got was that she had some sort of problem with her set of false teeth and was totally worried because of that. Also I got that she didn't understand me at all even when I pressed my fingers to the trach-hole and did my best to speak properly, so I ended up just nodding and such. She was more than happy with that.

    I'm actually somewhat proud of myself that I didn't slap her with a: [i]"Ooooh, your false teeth are giving you a problem? Oh my, I am soooo sorry to hear that. You see, I've an actual reason to be worried, now listen up..."[i]

    Actually I'm being somewhat able to pretend to be able to do socially acceptable behaviour again, it seems.

    Awesome.



    The dentist was also rather interesting. You see, I had told him last week (while crying) that I'm now in the stage called "checking if there's a relapse". I used the correct medical word for relapse in my language. He then had stared blankly at me and just said "okay", which I had found unsettling, but ... well, he apparently wanted to express that he didn't really give a crap. I accepted that stance of his, let him apply the fluoride and went to harass people who seemed to care.

    Today, he gave me that blank stare again and asked why I was still in town instead of in rehab.

    Doh!

    It may be that he just doesn't know enough of normal medicine to recognize the word "relapse" for what it means? Whatever. He's not my psychologist or my oncologist, so whatever.



    Anyway, I've packed my stuff for the 2.5 days in the clinic and I hope I didn't forget anything vitally important. I got my toothbrush and a towel, so I should be set. Hm, I need my hitchhiker's guide to the galaxy though.

    ... and that is actually an excellent idea for another item to spend some money on. I don't have the HGttG in english at the moment!

    Also, I'm lacking the latest Pratchett. Need to fix both. And I need a copy of Watership Down.
  14. Lytha's Avatar
    I'm back from the clinic. Julian is taking a nap on my lap now.

    Good news first, then some random memories from this surgery.

    1. The trach is sewed shut. Suture threads are due to be removed next Thursday, in a week, that is.

    2. This means that these specialists think that the lump is not a new tumor, but just the result of the radiation therapy. An edema.


    Yeah. I've been bawling and crying my eyes out since these two items of good news. This is a strange way to react to good news, I know, but I suppose I had bottled up ALL emotions as well as I could for the last week, and now the barriers are broken. Or something like that.


    Well.

    The throat-nose-ear guys are extremely creepy. While I was happy with them on Tuesday, I found them creepier and creepier the longer I stayed. It went so far, in fact, that I'm currently disappointed that I did fail to puke into the face of one of them during his last attempt to look at the lump via my mouth. He was a quick and sneaky bastard and jumped out of the way.


    I had a roomie with a trach. Another fine example for my hypothesis that women with trach still communicate, while men with trach don't. She didn't speak at all, but she was capable of phoning with her husband, telling him what she wanted to say by tapping her fingers on the receiver. Also, a well-developed range of gestures. The nurses were quite a bit thick, but I found her perfectly easy to understand. And of course a writing block.

    By the way, it sucks how people treat a temporarily mute person as if this person was deaf or a moron. (Speaking very loud, slow and clear, using simple words... gah. She understood me just fine, and I was speaking at normal speed, and very quiet due to my own trach.)


    Oh yeah... and the surgery. I am remembering more and more of each surgery, so I suppose I am more and more getting used to their drugs.

    You see, you get a tranquilizer of sorts before each. That sent me asleep almost immediately for my 1st surgery this year. It sent me asleep right after I had been moved into the surgery area for the 2nd surgery. It worked somewhat, but poorly for the 3rd surgery - I wasn't asleep until they injected drugs or let me inhale something, but I was calm and relaxed anyway.

    And this time, I didn't notice any specific calming and relaxing effects. I was cool with the surgery anyway, no racing heart or panic already before I had taken the pill. I actually studied my file while waiting this time (under effect of the drugs). And then I had a very long chat with the anesthecians, admired the sight of the surgery room and the monitors (watching your own heartbeat on a monitor is cool). They sent me to sleep with an injection and by inhaling something again. Not even the faintest inclination to fall asleep before that.

    And this time, I remember waking up in the surgery room. I guess waking up there is pretty much normal - they can't just pull the plugs and say that you're gonna be okay on your own, can they? But remembering it is not normal.

    Not only that, I also had another chat and my first crying fit right there, when I was told that the trach had been sewn shut - that implied that the doctors thought the lump to be harmless.

    I also remember some parts of being brought back to the waking room, some bits and pieces there (like crying some more and blowing my nose on the dressing gown which I had been stripped off anyway, and then receiving some tissue paper from the nurse).

    All of this probably means that I'm getting too used to the drugs.

    No wonder after 4 surgeries in less than half a year.
  15. Lytha's Avatar
    Injecting Heparin into the tummy of a person with a BMI of about 18 (or less now) is not funny anymore. A merry mixture of "this spot hurts badly" and "and this spot bleeds madly".

    I had received one Heparin shot in the clinic by the hands of a nurse, and she also wasn't very happy.


    Yeah well. Did I mention already that I'm somewhat on veggies again? At least for the evening meal. Yesterday's cooking attempt yielded nothing very tasty though, and it was extremely too much. Perhaps because of the day of fasting or something.



    Well. At least, both cats were pleased to see me yesterday and came to snuggle a lot. Them scorning me after the first and longest stay at the clinic was probably one of the hardest things about this whole mess.
  16. Lytha's Avatar
    Okay.

    I've contacted and met the psychotherapist (specialisation: PTSD and psycho-oncology, amongst some other things). She seems to be alright and agrees with me that the last few months were one small trauma after the other. Apparently, people will forget some of the nasty stuff on their own though. Anyway, I think this is a good idea, and she didn't seem to disagree.


    Also, I noticed today at the MKGs that this doctor had a nasty scar at the left jawbone. This explains why his face looks somewhat weird. Anyway, he didn't seem to appreciate being stared at, so I didn't ask where he got that. I'll do that at a later time though.

    He then gave me a thorough checkup of the throat and mouth (I interrupted the inspection of the upper throat by starting to throw up); everything was nicely accentuated by my "ow ow ow eep ow" exclamations. Left side of the throat notices again when it is touched, in other words. That is still not true for the lower part of the left ear though.


    The suture on top of the ex-trach I curiously inspected last evening myself (I just ripped off the bandages and had a look) will be removed in a couple of hours, by the HNOs. They'll surely make me throw up again as well, or they'll put that Borg-probe into my nose again. Meep.


    Concerning the rehab, I'm seeing an oncologist tomorrow.
  17. Lytha's Avatar
    The left side of my throat hurts. It's been doing that for a couple of days now, and it's annoying.

    This is rather obviously caused by nervous tissue growing back, so it is actually good - let me remind you that the left side of my throat, including the left ear, left side of the jaw, left shoulder, parts of my left back were numb since the 11th August. The left boob had luckily recovered relatively quickly from this state of numbness.

    So, now the rest of this area is tickling, itching, hurting. And I actually notice if something touches the skin in that area. That was the reason for the "ow ow ow eep ow" thing during yesterday's examination of the throat.

    Nerves creeping back into this area...

    Which is nice.

    I still wish that it would stop smarting.



    In other news, both cats are utterly annoying today. First, Julian dripped. ("OH YUCK NOT ON MY SWEATER! Stupid cat." - *HISS* (don't call me 'stupid cat) *and he assaulted my right shank* - "I can't believe that you just assaulted my shank. You better hide in the kennel and stay there!" - *hiss, glare, & assault on the left foot*....)

    Then, Geordi didn't want to leave my lap when I had to go to the bathroom, and once there, he escaped via my back. That means that the cat pokes the claws *deeply* into the skin on the back, uses the grip to get enough momentum to catapult itself over my back and away.

    I think they both better hide for a while now.




    Anyway, I got an appointment with an oncologist in a short while.


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


    ... and I tried to rip his head off during that appointment. I don't know if I'm on PMS (it's long overdue) or if I'm just generally pissed off at the moment, especially at doctors.



    Anyway. News on the food front:

    - cooked vegetables (or veggies thrown into the wok) work somewhat. Aubergines are especially fine. Barkley is not as fine unless it's very cooked. Potatoes aren't vegetables, they are too dry no matter what.

    - I can eat egg rolls now. Too much chewing makes the left side of the throat hurt a massive lot though.

    - When I tried a vanilla/chocolate fla, some days ago, the chocolate part was just plain disgusting while the vanilla parts were only mediocre in their disgustingness. I really need a LOT of sugar molecules now to taste anything; any less and it just tastes like the rotten milk that probably makes up the biggest part of the ingredients. It was the same, if not worse, for a strawberry yoghurt. Completely disgusting.

    - Tea, aromatized one from the local tea shop, is okay. I throw in a lot of sugar, too. I smell the aroma, so it's fine. The sheer mass of sugar near the bottom of the cup even makes it taste somewhat sweet.

    - I'm working on a cocoa now. Drinking it through a straw is exhausting the left side of the throat though. It tastes disgusting, but not as bad as the yoghurt or the fla had been. Also it's not rotten milk, just milk. There's some vague idea of sweetness, too, in other parts of the tongue than I knew to be somewhat active again.



    Oh, and the egg roll of today was a lot better than the one from some days ago. This bodes some hope.
    Updated 02-12-2011 at 18:13 by Lytha
  18. Lytha's Avatar
    Hm.

    My dear mother was all like: "I don't understand why you're so aggressive towards the doctors. Whenever I had some illness, they always HELPED me. So, what's with the hate and anger?"

    Well. Firstly, I direct my anger mostly towards those whom I dislike or towards those who have seriously hurt me. The graduate medicine student who managed to make a vein pop (the bruise is still going strong) is one recent example. Or these HNOs because they had magical eyes and could distinguish an edema from a tumor by just looking at it, without the need for a biopsy. Also the HNOs because they always try to look into my throat by pulling my tongue out with a tissue paper.

    Or the radiation therapists, because of what the radiation therapy did to me and because they just did pat me on the back after the last session and sent me away for 6+ weeks (more than 6 weeks because of the rehab trouble and delays).

    The oncologist yesterday was indeed being the target of somewhat irrational anger though. It pissed me off how young and good looking and cheerful he was; he probably graduated just a few month ago and he only just had started working in the oncology at the earliest in this November. Also, I was already furious that they wanted ANOTHER frigging blood sample (last one was from Wednesday of last week! God damnit, it's ENOUGH already with the ****ing poking and poking and poking and prodding) and then he -as all young doctors, it seems- turned itchy because I was studying my file when he entered the room. And I had to tell him the frigging case history again and I wasn't in the mood. Anyway, I apologized for trying to rip off his head (a few times), tried to behave for a while, and ended up trying to rip off his head again.


    The first doctor who had sternly told me off for daring to read my file had been the MKG on the special day when the results of the very first biopsy were finished. He had actually taken the file away from me and with him when he left the room to get some more papers. This was -somewhat- understandable, because there could've been a paper stating "malignant tumor" in the file. And those kids apparently think that it's better when the patient learns of the diagnosis by means of the doctor's words rather than by reading the file.

    The other doctor telling me off for studying the file had been Doc Pretty. They had described the tumor in a strange way in the file, a way which looked as if there had been actually TWO tumors (one on the tongue, one below the tongue), and I was getting paranoid and angsty about them having lied to me.

    Now the one from yesterday... he didn't really tell me off, but he seemed irritated and he wanted to have the file then. On the other hand, he didn't mind showing me the results from the analysis of the latest blood sample (hemoglobin looks very good, leukocytes are coming back - from 2.3 on the 4th November up to 4.5 on the 1st December. That is good. (and at 5.0 the minimum for "normal amount" begins)).

    Anyway... not a good start.



    Also, the anger is another case of misguided anger management, I guess. I am getting completely FURIOUS when I accidentally stumble into that one ****ing cancer forum again. You see, before this all here, but when I was already worried/expecting that it was a malignant tumor, I was doing some research about "do you have to undress for a CT or what?" for the upcoming CT. Google found something about this topic on the cancer forum. I went in there, informed myself that you can keep the t-shirt on, and looked at the further contents of the place.

    I found the tongue cancer subforum.

    I read a couple of threads, mostly from friends and family of the deceased, telling the rest of the forum's readers about the demise of their loved ones.

    Really the ideal kind of lecture for the status I was in at that point.

    Anyway, I started to hate the people there then. I also can't say that I'd like to talk to friends or family of other cancer patients at all in RL, but I can somehow cope with them.


    Yeah, and I stumbled into that place a couple more times since then and I always became furious again. I even hate them for the way they (in this case, the cancer patients themselves) reacted to one of them dieing.



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


    Anyway. I also discovered quite recently that the radiation therapy, the "tomotherapy" is supposedly the newest development and that I should probably be glad that this clinic here is one of the 300ish places of the world that has these machines.

    The side effects of this **** would've been so much worse with IMRT or even more "ancient" machines.

    I still hate these doctors though. It was 30 walks to the gallows, and that was really about 10 times too many.



    Current status:
    Trach: threads are out, but there's still a plaster on top of the thing, and I still need to press the fingers onto it while talking or coughing. This continues until next Wednesday.

    PEG: Dunno, I am curious what it'll say about the end of the latest antibiosis. Hurts a little bit at the moment.

    Port: apparently, it's really meant to stay there. According to that oncologist, that is. I don't like the implication of: "patient is ready and eager for another chemo cycle" or "it's so likely that there'll be a recurrence that it should stay for sure".

    Cats: Geordi annoyed me by ripping another bag of liquid goo to shreds; Julian is snuggling on my lap right now.

    Weight: 56.5kg (BMI = ~18.5)

    Mood: if my mind is allowed to dwell on its own, I end up crying. Else: super aggressive. I still can manage to keep it somewhat at bay in the public.
  19. Lytha's Avatar
    I expanded my diet to vanilla ice cream with cream and cocoa. Tasted perhaps even vaguely sweet, and I guess that it had a couple of calories. But it was much too cold. So, maybe I'd need to heat up the cocoa before throwing the ice cream into it?


    Also, totally awesome: Tap water is now tasting bitter. Spit and pressing that part of the tongue to the roof of the mouth also tastes bitter though, so I am quite sure that the taste quality of the water hasn't changed for real over night.

    This sounds utterly revolting, I guess: But it's a sense of taste returning that had been killed off completely. When that guy tested my sense of taste, he had even asked if I had ever had a taste for bitter in my past; it was so gone that he just couldn't believe it.


    Tap water was tasting sour early in November, salty in the middle of November. At some point, it stops doing that and the next taste sense misfires on contact with the cool water.

    Umami and sweet are still missing now, I guess.
  20. Lytha's Avatar
    Can you imagine a better way to spend half the night than to sit there and be all angsty about the theme "coughing fits could rip the trach back open"? I bet you can think of a lot of better ways.

    The main problem was that I was having coughing fits and that the cool HNO bastards had told me explicitly that these can rip the new scar back open. Also there was noone whom I could phone at around 2am, to talk with about this horror.


    Oh yeah. And 55kg has been hit now. Since this was my personal limit for acceptable weight loss and since the weight just keeps going down (making me wonder if there isn't in fact another tumor somewhere in the intestines), I guess I'll have to tell myself that the scales are lying, or just to stop weighing myself. Or I could lie to myself and tell me that in fact 50kg (BMI = 16.5ish) would also still be nothing to worry about, or something.

    Well, the scales DO lie; they're 2 kg off. So in fact, on a set of well-behaving scales, I should be 57kg now, even more if they put me onto it with winter boots, sweater and jeans.

    It doesn't really help that my legs would probably fit twice into my current pair of jeans and that Geordi's tummy is wider than my upper legs, measured at around their middle part.


    I'm also SO pissed off that a death by keeping losing weight would be a "death by cancer" instead of "death by radiation therapy", which is would be.

    Seriously. These ****ers will sit there and keep being convinced that their antiquated "I love the atom"-style "therapy" works, while it in fact might have been the kick into the butt that prevented me from recovering from the surgeries. Because feeding without any kind of appetite just works, right? **** them.

    Yeah well. **** happens.
    Updated 06-12-2011 at 13:06 by Lytha
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