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  1. Lytha's Avatar
    Good news. I managed to eat some pasta with cheese out of the oven today. Granted - it was more cream and salt and veggies than pasta, and it was a tiny portion and it grew stone cold before I was finished, but I did eat it. A year ago, I'd have called this sort of food something valuable and lost from the past.

    With food, it's weird at the moment. Basically, I have my mental list of about half a dozen things that I can eat.

    Every once in a while, a thought happens in my mind that something was yummy a long time ago / that something might just work now, perhaps.

    Then I think about it for a week or longer, sometimes walking past it in the store, looking at it. Mostly deciding that it won't work or will be disgusting anyway.

    After these long ponderings, I may acquire this object a while later anyway; prepare it how I have thought about how it may work now (for instance: buns with cheese are a no-no, but if I soften up the bun with milk and mix it up with an egg and fry it, I can somewhat have a bun with cheese), and at the moment, I experience the surprise that it works indeed quite a few times.

    Of course, with disappointments. Chips (that's crisps for the UK people) taste like cardboard paper. The formerly yummy bun with tomatoes+mozzarella from the bakery required a lot of oil and a frying pan and tasted like meh anyway. There are insane amounts of salt and pepper and oil that have to be added into everything.

    Oh yeah, and "sweet" is still gone out of my life. A neighbour gave me a chocolate easter egg today. :( I don't know what to do with that one. Rubbish bin or give it to someone else, I guess.
  2. Lytha's Avatar

    Things are improving. I've discovered, for instance, that I can eat half a portion of microwave french fries; if I add my extremely fatty dip sauce, that is. And they don't taste totally crappy, and they're getting better at aiming at the esophagus instead of into the trachea. Black olives also work, and they even work as a snack. That is: YES: I actually eat asides from the 1 evening meal/day now. Occasionally.

    Anyway. There's something that upset me a few days ago, immensely that is.

    You guys know that I had a neck dissection, right? A "modified radical neck dissection type I", to be precise. Left side is now missing: submandibular saliva gland, vena jugularis, musculus sternocleidomastoideus, some more tiny muscles between thyroid glands and clavicula/jawbone. As well as all subdermal fatty issue and all the lymph nodes they could grab.

    This leads to some problems with holding the head upright (especially if the bus driver uses the brakes vigorously), and with raising the head when lying on the ground - situps are so much fun now. Also some other disability issues with some exercises. Turning/rotating the head is clumsy.

    And it looks bad, due to the asymmetry and due to the fact that you can now see my arteria carotis in plain sight. This is what idiot chicks in the bus tend to stare at, especially in summertime when I flaunt it by wearing short sleeves and cleavage.

    So. Right. I'm getting used to it.

    Up until 2 months ago, the entire region of the skin was totally numb. Now the prickling, pinching and twitching has seen some successes. First, I had a sudden excruciating pain in this area, when walking around outside in the snow. Some Novalgin helped.

    Last week, I experienced the same in the office. No Novalgin available there.

    The pain was as if you have a cramp in some muscle. Alright? AS IF, I am not thinking that I actually had a cramp. Because the pain was just outside of my skin. Precisely where normal people have a sternocleido. Phantom pain / missing limb pain, I suppose. It went away after a few hours.


    I also thought that it was the normal way neck dissections in cancer cases like this were done - I see plenty of people without sternocleido(s) in the tumor check-ups.

    So, my natural first move was to go into the tongue cancer survivor group (that's in an internet forum; I don't know any of them personally) and ask them about what they do with their phantom pains in the missing sternocleidos. I also mentionend that it felt "like a cramp".

    Apparently, most people get a type III neck dissection, not a type I.

    The first answers were incredulous. "What? Your sternocleido was removed?? WHY IS THAT???" - or "Are you SURE???" - or "You must be MISTAKEN!" - or even "If you have a cramp in the muscle, then the muscle can't have been removed!" (WTFFF)

    I'm feeling like a leper amongst lepers currently. The freak among the freak show.

    Updated 17-03-2013 at 12:43 by Lytha
  3. Lytha's Avatar
    Finished her title progress last week.

    Then I started to go a bit for her black moa chick - hadn't done this at all on this character yet, except for collecting all the ingredients. But Sorrow's Furnace is boring.

    Anyway... I scrolled through my characters, tried to play the "Ranger without Xunlai Storage access" for a short while and didn't like the ranger gameplay immediately.

    Then I noticed a male Tyrian mesmer who had achieved "Legendary Defender of Ascalon", and I decided that it's time to pull him out of the guildhall, and back into the early stages of Prophecies. He's unique, as in "he has actually got whiteish skin and matching hair instead of following the 'drow' look", and he's named after one of my cats. He just hit "survivor [1]" by doing Augury Rock and has 75% of Tyria explored. I grabbed Mox for him as soon as he hit L.A. (Mox ran a dervish build for the shortest of times, and is now working as a SoS spirit spammer with Union, Shelter, sometimes Displacement, sometimes a Mend Body And Soul). And for the Crystal Desert, when Alesia became more trouble than tolerable on a survivor who returned from a GW-break, I grabbed Ogden (heals) and Vekk (since I've got no use for an elementalist, he pretends to be an illusionist.)

    Nice, so far.


    Oh yeah, I also noticed that my oldest mesmer girl (the one wearing black rogue armor) somehow turned into a legendary survivor over night. Her "/deaths" say that she has died over 1400 times, but has received 1,9mio XP after the last death. I have no idea how that happened, but it makes her another option to play with after I gotten bored or finished with this Julian.


    Account-wide achievements look somewhat bleak.

    - Lucky
    - Unlucky
    - Treasure Hunter
    - Kurzick

    Not Maxed:
    - Luxon (~1mio out of 10mio)
    - Wisdom (~6,1k out of 10k)

    Maybe I'll switch my guild (not that any of the members would care, lol) over to Luxon and grind 9mio Luxon points, buuuut.... do I really want that? Having newborn characters "Kind of a Big Deal" would be kinky though. And it would relieve the pain that is:
    - Dzagonur (Guardian of Elona + Legendary Guardian)
    - Cartography of Cantha, and perhaps Tyria now as well (no more necrotic traversal in Dunes of Despair)

    Yeah well, I don't know.
    Updated 12-03-2013 at 08:42 by Lytha
  4. Lytha's Avatar

    Soooo... that mob in Alkali Pa(i)n seems to be there always. Just east of the area south of the mesmer boss, it is wandering about. I had Frozen Soil (3 points in Wilderness Survival) on Xandra, this time, left her out of the jundundu and let her keep it up. The tricky part was to be sure that the mob was in the radius of the Frozen Soil. Did work flawlessly on the 2nd attempt with this strategy (we wiped 1x first, and thanks to the FS spirit, no junundu-wail + DP accumulation on part of the heroes!). We wiped on the 2nd attempt one time again as well, but we had all of the cavaliers and acolytes down at that point. So I left the remaining mesmers, necros and rangers wander about.

    Dzagonur worked on today's first attempt. (I am not really awake yet).

    Xandra (Spiritspam) and Razah (some restoration with Union and Life) were with the 3 NPC groups at the eastern side.

    Olias, MoW, Tahlkora, Ogden, Norgu and me with Backfire instead of Powerspike (no idea if that was necessary, but it worked) defended the rest.

    Now, the thing is really that new mobs only spawn once the previous mob has been totally defeated. By leaving lone rangers about, you get a lot of breathing time. Also, I positioned my group right next to where I expected General Dorian to spawn while some minions kept hitting on that last lonely ranger: Instant-aggro of Dorian = very fast disarming of his spawning point!

    It was a tiny bit hairy when because we had also aggroed some of his Margonite friends while more kournans came running down the hill already, but the NPCs of the center of the map distracted them from capping.

    I then went for the Monk General and he instantly got his Spellbreaker up, but a group of Kournans without such protection against my group appeared and stood next to him, involving him in their Panicked state. No issues there.

    I got the Paragon General before his next group of Kournans could spawn, he was eager to trigger Norgu's Inepti and my Empathy.

    Xandra and Razah needed a bit encouragement to spam their spirits during the course of the mission, but their Shelter, Union and Life definitely helped to keep their NPCs alive and well against a large amount of red dots.

    And then my entire group helped them and it was over quickly.

    Soooo..... no more worries that Nefertari will be stuck at 29/30 titles.

    This was my 3rd attempt at this mission since my cancer diagnosis. 1st was when I took the Zaishen bounty at some time in the fall of 2011, then another attempt yesterday, and today it worked with some slight modifications (i.e. don't place the minionmaster to the east - place the spiritspammer there and take the minionmaster with your own group! And some minor skill changes on Razah's skillbar.)
  5. Lytha's Avatar
    Well... I've finished off Tyria and Cantha. So, "only" EotN and "only" Elona remain. I went for the Alkali Pan first. After feeling very happy about a very unproblematic defeat of that mesmer undead boss and after cleaning out 75% of the area, I ran into a mob looking like it might've been actually 2 mobs combined, with 2 acolytes and 4 cavaliers. The heroes in junundu mode went moronic (I hate junundu mode, anyway). Then I discovered that I had forgotten how to disable skills on the skillbar of heroes, so we went for a straight 60% DP on almost everyone at that mob. Because the morons kept resurrecting everyone. ... That was the problem on both sides, actually. I thought I could maybe overwhelm this giant mob outside of junundu form and tried to stop the heroes from DPing us out, but it didn't work.

    Well, I figured it out in the end, when it was too late already (presumably, that is). Shift + mouseclick on the undesireable skill.

    GW seems to be the master of undocumented features, such as the shift+mouseclick thing, isn't it? All these things that you only know if you've been religiously following a forum, since it isn't documented ingame at all.

    Yeah well... given that Alkali Pain has to be repeated and that there will be more mobs of this sort then, and that Dzagonur is left, my motivation to play this game is greatly diminished again.

    (Also my motivation to give Anet more money for any of their products, but that was already next to zero anyway. The development they took with PvE in the course of the 4 GW1 games did tell me more than enough - I want to play to relax, not to have reasons for raging fits. And anet does not provide that.)
  6. Lytha's Avatar
    Interesting. I seem to be unable to edit this year-old entry? Anyway...

    Why is Dzagonur on the list of things still to be done for this character? I don't know how I'm supposed to do this mission anymore, especially after chemo and all that and a year long break from GW. You see, I played GW during the treatments, if I recall correctly. And thus I associated it strongly with being 90% dead and miserable.

    I've logged in yesterday for a few minutes and looked if the game is still running. It is, but it is very, very empty now.

    And then I crossed off from the list:
    [x] The Falls
    [x] Majesty Rest
    [x] Talmark Wilderness

    Now thinking about doing Kessex Peak.

    One thing is important for Majesty Rest: While I switched Gwen with Livia in her boss-killing skill setup (pet and Signet of Sorrows), I screwed up and had her on the not individually manageable party slot #8. So, the old strategy for Rotsy didn't work, and I couldn't be bothered to restart. It just worked as well by frontal assault, after carefully taking out his little friends one by one. It would have been easier with Gwen, due to Wastrel's Worry... especially given that I screwed up getting the pet killed at the feet of Rotsy at all. Ahum.
  7. Lytha's Avatar
    So... what have I got by now?

    - Ability to speak with an almost normal voice - unless the head is turned to the right side; unless there's a lot of noise; unless I've done too many sit-up style gymnastics; unless it's before midday; unless I am nervous or in stress; unless I want to go for pre-recurrens paresis variety of the pitch.
    - I don't quite need the water bottle at all times and after every 2nd sentence anymore.
    - according to my speech therapist, the facial muscles and the tongue muscles are a lot more accurate by now. Still lithping with the sharp "s"-sounds. Tendency to spittle a bit sometimes.
    - I fit into size 0 now, though it might be tight around the butt with some pant cuts.
    - the hair on my neck has grown for a year now and doesn't leave the pony tail all the time anymore. Less appearence of a sick dog, in other words.
    - my "Igor"-style (cp. Pratchett's Discworld) scar around the throat seems to look less horrible, according to some people. I think that may be because I'm hiding it under a scar due to the winter season at the moment though.
    - the patches on the left side of the throat which lead to immediate coughing fits when touched gently are a bit more scarce. For example: A while ago, I was in coughing fits when I touched the throat next to the left ear lobe. This is not the case anymore.
    - I don't have the PEG anymore, and exchanged the plastic tube for a nice, though not quite on centre 2nd belly button! This is quite an eye-opener whenever someone looks at my belly!
    - I've still the chemo-brain. Tried an IQ-test sample a few days ago, and oh man, no, I wouldn't be able to match the Mensa criteria anymore. But I can concentrate longer than 5 minutes when reading a book again. That's something.
    - I managed the staircases up to my flat without struggling for breath a few weeks ago. Then I lost more weight and now it's bad again. Also, back then, I could swim 40x25m without drowning. I don't dare to go swimming at the moment because I'm already getting black spots in front of my eyes when just walking around though.
    - My veins are apparently better. They don't pop open when a doctor is slapping them gently to stick a needle into it anymore.
    - My hormones are back to normal. No more annoying irregularities, just a very short cycle.
    - I've discovered recently that I can eat a few more things, though with changes to normal food preparation (meaning: I need a LOT more olive oil than normal people): I can put a "soft crumpet"-with-tomato+mozzarella+other stuff into a pan, fry it, and eat it. With a lot of olive oil, I can eat potato-bags filled with creamed cheese. I have discovered that I can mix a whole lot of kcal bombs together (i.e. cream, miracle whip, sour cream) with some spices and get me a sauce that fits to most things.
    - the last coughing fit "until the dinner revisits by the entrance" was 3 days ago; but that one was a lot easier to my nerves than the one before in summer of last year.
    - I'm also much calmer now when some food particles, like the outer skin of an aubergine, decides to visit both trachea and esophagus at the same time. The mean ***er actually left the trachea on its own when I just kept eating, after neither coughing nor a few swallows of water didn't dislodge it.
    - Yeah... "sweet" is gone from my life, it seems, but salty, umami, sour and bitter are back. I actually happen to have "bitter" as a phantom taste present at all times for a while now, but that's not bad at all.
    - Smell is still wobbly. There are still occurrences with "smell bombs", but at least I don't feel like throwing up then anymore. What I mean with that... well, normally, smell is very, very muted now. But sometimes, some smell comes across extremely smelly. Walking as a vegetarian past the meat area of the grocery shop was good fun for a while. The meat salesgirls hate me by now, I think. Nothing like a customer who walks past them, suddenly starts gagging, covers her nose and mouth and gives them a frightened look. Oh yean.
    - The chemo welts are gone from my toe nails. :p
    - speaking in AD&D terms, I think I lost a lot of appearance, constitution, strength and sadly some intelligence. Gained a few points in wisdom and charisma though. Very absurd.
    - PTSD-style flashbacks and intrusions are a bit more rare now, though there still are a lot of triggers. Getting a CT is still one of the usual culprits, or having to enter the radiation therapy building or even seeing one member of that department's staff.
    - Nervous tissue in the left cheek, left earlobe and left side of throat is still busy. Tickle, tickle, pinch, pinch. I felt warmth and cold there, recently. Oooooh yeah.

    And, oh yeah, I am -so far- free of recurrences or secondary tumors.

    Ewwww. It became a wall of text.
    Updated 15-02-2013 at 14:02 by Lytha
  8. Lytha's Avatar
    I am alive, but it still sucks. If you ask me, there were 5 or even 10 too many radiation therapy sessions. Still doing rehab stuff, and after several months of "no progress at all anymore" and another episode of weight loss, I see now little, tiny bits of progress. Like a bit more saliva during the day, like me actually smelling and tasting a few things again, like not having had a bout of aspiration->coughing->throwing up for half a year (well, until the day before yesterday), like not being always a nervous wreck at all times no more... things like that.

    Life still sucks.

    Anyway... I've been reading in other places while I wasn't blogging here.

    One forum in particular is great. There are either hypochondriacs who think that they've cancer because they have a flu; or massively disabled people who chat about that with a bizarre air of normality.

    This was amusing, up to the very recent events. One guy's father in law has real cancer now, and the really bad sort as well (pancreas) and in the final stages. The dude apparently thought that it was pretty normal that cancer people throw up blood, have water in the belly which is removed by doctors, and that cancer people are just depressive and thus can't get up from the sofa anymore.

    Now... well... I've been spending a lot of time since my diagnosis with the repetitive re-thinking of "what would I do if there's a recurrence or another tumor", and I know what I'd never want to have friends, family or doctors do to me in such an event. Most of all, getting what I want instead of what the medical staff would probably advice, that's extremely important to me. An extraordinarily abhorrent idea would be, for instance: The idea of being dragged away from home by anyone and sent into an understaffed clinic and to die in a bed that's placed onto the corridor because all rooms are full... eh, you see the idea.

    I've the strong feeling that family, friends and medical staff see an ill or dieing person as incapable of making their own decisions like a mentally disabled child or like someone with Alzheimer, you see?

    And back to that pancreatic cancer case in that forum: What I observe there in the responses of the other posters, is exactly that.

    That father-in-law doesn't want to go to a clinic or into a hospital. He does not want anyone wearing white in his house, caring for him. His visit in the clinic must've been some sort of hell. I can relate to that.

    Now the other guys who're posting in that thread are all about "tell him to go into a clinic NOW" or "call a doctor NOW and let him drag your father-in-law to the clinic" or "YOU have to do the decisions for your mortally-afraid father-in-law now!" or "make sure he get's a PEG or parenteral food!! He must not starve!"


    Just sickening.

    I guess... it's the stupid family who survives the cancer, and their side of the story survives. Their idiotic ramblings of "Well, we dragged him to the hospital, and thus he had another 2 weeks. We were so glad about this." What the deceased one might've suffered through because of their actions is lost in his grave.

    Is it really soooo much better to die of a failing liver / failing kidneys / suffocation by metastases in the lung than to die by starvation??

    ... I. really. do. not. think. so.


    Ah man. It's just... giving me extremely bad memories and bad vibes. As if you aren't even allowed autonomy on your deathbed? ...
    Updated 15-02-2013 at 00:03 by Lytha
  9. Lytha's Avatar
    Yo. No recurrence.

    Several psychological issues though.

    Firstly, whenever I've got a quiet moment, I'm thinking about how to react if one of the CTs will show something bad at some point. I'm informed now about palliative medicine and their "either death by respiratory suppression via morphine or death by dehydration; and we'll keep the patient sedated as well" stance, and I am horrified by this. Especially the part with the sedation. The morphine side effect or the dehydration aren't that bad.

    Anyway, I'm pretty much sure that I know what I'd want instead, but the problem would be the chat with the doctor beforehand. I know by now that they tend to take over the reigns of the patient's life if there's some sort of malignancy, and to get out of that will be difficult. And so, I'm mentally roleplaying such scenes over, and over and over again. It's distressing.

    Secondly... I had tumor after-care just yesterday. To my surprise, they jumped the chief doc of this department at me instead of one of the two assistant doctors whom I know and like by now.

    I've had 1.5 conversations with this doc so far. First contact was on the 5th October 2011, when I had starved for 5 days, the need for morphine started to become rather obvious and I was, to summarize it rather distressed. It's often said that the first impression is the ticket, and this went definitely down into the loo in this regard. Second half of a contact was in March 2012, when he looked at the lumps at my throat during one docs' visit in the hospital, because he was scheduled to cut them out. This was then rescheduled surprisingly and another guy did that extraction.

    Oh yeah... these tumor after-care things are asymmetric communication settings. Patient is placed into one of those chairs as you know them from your dentists. Doctor wields his status insignia white cloak and sits on a normal chair, eyes are greater height than the patient who is more or less in a lying position. A quick and easy way to evoke patient's submissive stance. Funnily enough, I had been thinking about just that the evening before, when I was doing another round of "what would I do if they tell me that there is something malignant again".

    So, anywaay, the after-care appointment went off on the wrong foot right away. First, I started off by asking in surprise why he was doing this appointment - which seemed to put him rather off. Then he sat down there with some extra expressionless/neutral face and asked how I was doing.


    Uhm. I told him of some things that annoy me at the moment (weight loss, dry mouth) but that I was better than 10 months ago. Then I remembered that I had the last CT thing on paper with me and could divert the topic.

    He read it and went off a bit on the liver thing. And then we were back at the alcohol abuse thing. You know, I have been recounting my wild years at university now a couple of times, and I think I've had about between a dozen or two dozen interactions with alcohol. I neither liked the taste nor the effect on the brain (the feeling that the IQ just dropped by 20 points), so I never really got into the thing. Last interaction with booze was some sort of office party when I was doing an intern, and I consumed half a glass of sparkling wine. That was in 2001. So yeah, there's definitely some sort of alcoholism issue with me, right.

    I tend to be pissed off when doctors start this topic yet again. And he did just that.

    I then told him that I had some questions and asked him (even though I rather would've asked one of the two assistant doctors...), he had difficulties understanding me because my voice is rather quiet when I've to talk while lying in a dentist's chair, but he answered the questions.

    Then he performed the tumor control and I got another episode of fright when he pulled on the gloves - nothing unusual or worse than every time before here.

    Afterwards I asked him about the scar correction thing - I am not eager for the next intubation narcosis, but I want to be sure that there isn't some sort of time limit put up by the insurance for this sort of thing. And then I remembered that I wanted to ask about when the PEG will be pulled out.

    He took the opportunity to jump at me with a: "Oh right. I wanted to ask you about this, too. Why don't you gain some weight."

    Just another awesome question. Just like "how are you doing."

    Right, anyway, he then decided for me that it would be best for me to leave the PEG in my tummy. Until I put on some weight. In other words: until I grow of old age.

    There was also the indirect notion of how useful PEGs are in a force-feeding scenario.

    The stupid thing about this is that I agree that the PEG shouldn't be removed right about NOW, but I want to have it out of me at the end of this September. That's enough time to try the oral feeding while nervously watching my weight development, I think. If I can hold the weight, it's fine, IMHO.

    But this guy just decided this FOR me, not TOGETHER WITH me. Back at "being helplessly in the hands of some other guys who make all the decisions for me". Back at what made this last year so traumatic. Bloody hell.

    So, now I'm rather pissed off and am mentally roleplaying the PEG issue as well as the recurrence incident. I'm even thinking about if removing it myself with scissors would work or if I'd be leaking all over the place then.

    Oh yeah. And he wrote down my weight and size and something with two words and a "?" behind it. I guess what this was I'll learn in 6 weeks from now, during the next tumor after-care. I'm worried that it might've been "eating disorder?" or "psychiatric consultation?" or things along that line.
    Updated 02-08-2012 at 11:11 by Lytha
  10. Lytha's Avatar
    Yeah, been a while.

    My voice still sucks, but it has a wide variability now between diplophonic croaking and "almost normal".

    Tomorrow is the "birthday" of my diagnosis.

    And on Monday I'll hear about the results of the latest CT.

    That aside, my colitis ulcerosa decided to join the action and give me some more kicks while I was down, and that didn't really help at all. I'm kicking it now with medicine though, so far, it looks like it has already left the building for now.

    I've been doing a "never level up past level 1" in Skyrim recently and had two splendid fights against dragons already. It seems that the game will become significantly easier after a while though, because the skills do improve, while most of the foes continue to be normal bandits and simple wolves. Of course, dragon or frost troll encounters will always be exciting.

    Oh, and work goes well, by the way. It's stuff to do and not too exhausting, and the boss doesn't mind that I arrange my presence times in the office according to my other appointments. :)
  11. Lytha's Avatar
    Croaky -> very quiet -> croaky -> somewhat less croaky -> croaky -> diplophonic -> "normal".

    That's the stages of my voice today. The changes were induced by:

    Croaky -> very quiet: relaxation exercise in speech therapy
    very quiet -> croaky: breathing exercise in speech therapy
    croaky -> somewhat less croaky: not speaking much for some hours
    somewhat less croaky -> croaky: talking while lying down
    croaky -> diplophonic: talking some more while lying down
    diplophonic -> "normal": repeating some of the breathing exercises from speech therapy in the evening, plus a lot of humming. Suddenly, the vocal cords plopped back to synchroneous swinging.

    It's not yet really "normal", because it requires speech therapy's breathing technique and more volume than my really normal voice had. Also, holding the head forwards and downwards helps with keeping the voice like that.

    Anyway, it'll be back to croaky again next morning. I just know it. The nightly dehydration ritual ("thank you, dear radiation therapists") doesn't really help the recovery or rebuilding of the destroyed voice.
  12. Lytha's Avatar

    I had a really horrible week, and I am not sure how the weekend will be.

    I think the trouble started with that professional teeth cleaning thing of the week before. I mentioned already that this situation had a lot of similarities to the biopsy excision event; meaning that approximately 3 flashbacks were triggered during it and high levels of anxiety were induced, starting with those gloves of his already.

    We've dealt with flashbacks in the psychotherapy and I know a method to shelve them away now. That worked in that situation as well. 3 more images for the mental folder of pictures of horror.

    The following weekend then was alright.

    However, when the week began again and I traveled to my appointments, I had flashbacks while walking around again. More and more of them. Increasing in an exponential manner. Also: when I travel with the bus to work, the fastest method is to take that one bus stop from which I have to walk along a "high traffic" road for a couple of hundred meters. This road was problematic for a while already; I tended to get "waking nightmare"-style images of nasty things while walking there, like run-over cats or humans. This got worse during last week. A lot worse.

    On Wednesday morning, the flashbacks (all concerning the biopsy / first surgery) were coming so fast after each other that I didn't have enough time to shelve them away anymore. This was rather overwhelming and the crying fits started.

    Wednesday evening/Thursday were even worse. I spent half of that night crying (well, up until 04:30 or so).

    At least half of the time I was supposed to try and work on Thursday was spent in a quiet room, crying because the unwanted memories kept coming. I left 1.5 hours earlier because it just didn't make any sense being in the office.

    The walk along that high traffic road turned dangerous at that point. I think it's obvious what I mean with that, given the mental associations I've had with that road for a while now and the mental overflow crisis.

    I called the crisis helpline and talked with him for about an hour then (he asked me to call my sister later that day), then I walked through heavy rain to my appointment at the physiotherapists. Mood swung to euphoric/manic because of that walk in the rain. It switched back to crying fits during the appointment.

    Sister told me to phone the psychotherapist. Psychotherapist scheduled an emergency session for today in the morning.

    Several helpful ideas there.

    Anyway, I was extremely agitated when I had my first appointment at the new logopedician. I guess I gave him a very horrible first impression, but he seemed tolerant enough. I'm sure he has seen worse, because, yes, he really works with adults who're in as deep or deeper crap as I am in.

    The crisis isn't that bad right NOW. Julian hopped onto my lap and that's always relaxing. He of course only did it because I didn't give them their dinner yet, but it's welcome anyway.

    Also, it helped a lot that the psychotherapist told me that this is absolutely friggingly normal for someone who went through that all and perceived it as I did.
    Updated 01-06-2012 at 18:13 by Lytha
  13. Lytha's Avatar

    If I don't watch it, I will hit the dreaded size zero sooner or later. No... the weight is still stable at "between 55 and 56 kg", but the legs are growing thinner and thinner. My pretty and comfortable 28/34 jeans looks like it's a few sizes too wide now.

    Since I wouldn't normally see the food therapist until in about 2 months, I made an appointment with her for the week after next.

    "I need an appointment with that food therapist of yours, because my legs are growing thinner and thinner"... I think this is a line you only hear in an oncology. Or a line that's only taken seriously in a context like that at least (since I don't think that an anorexic would actually see the need for an intervention if her legs grew thinner....)

    I'm just glad that I don't have to inject Heparin into my tummy anymore now, because this really wouldn't be fun now anymore. It's a lot easier to find a spot that doesn't hurt if there's actually some layer of fat, you see.

    But... meh.
  14. Lytha's Avatar
    I had to walk around through bright late morning sunlight and it hurt again. In the eyes (which were blinded), on the face, on the arms. Uhm. I had thought this would be over after end of the chemo/radiation fun.

    Also, I am growing more and more neurotic concerning the regrowing hair and the two toenails with horizontal stripes. I might assault the next treating doctor about these - too bad that the next treating doctor I'll see is a MKG who won't be able to contribute anything useful to chemo/radiation side effects.

    Well, I can jump into the faces of the oncologist and the radiation therapist with these things in about one month.

    The regrowing hair is somewhat curly. I didn't have curly hair before.

    And the nails look as if they want to tell me that I'm only just halfway through from recovering of the chemo/radiation (because the horizontal lines are about at 50% of the length of the nail now).

    Whine. Whine. Whine.
  15. Lytha's Avatar
    Whatever it is that the physiotherapist has been doing to my left shoulder, it seems that he has done quite some progress. I dared to throw a glance at my mirror image just now and the hunchback-of-Notre Dame effect was lessened a lot.

    Erm, there's need to explain this a bit, I think. Ever since August 2011, I've cramped up the "fear muscle" (the muscle that tenses whenever you're in fear) in my left shoulder. It also definitely doesn't help that several other muscles are gone from that side of the neck - the "fear muscle" is more or less the only one left, and he now has to do all the work.

    This led to a very asymmetric neckline, with the left shoulder being seemingly a lot higher than the right one.

    The physiotherapist has been working on that for 3 sessions, and it seems that there's progress. I'm glad about that.

    That aside, I had a professional tooth cleaning session today (removal of the calculus and polishing and stuff). This went worse than expected. I hadn't expected anything bad before this, but when that -male- assistant pulled out the tube that sucks stuff away while he's working, I had fits of hysteria. Last time someone had used that tube was during the biopsy of the tongue.

    Also, he was male, and the MKGs are predominantly also male. Bad associations all the way.

    He seemed somewhat unnerved by this all in the end.

    Then the dentist herself talked about half an hour with me about this all - she had been the one to whom I had walked back in July 2011 when I had noticed that something was very, very wrong.

    She said (among other things): "I'm glad to see you alive."

    Also, she apparently knows the MKG privately, who had sent me off to the clinic immediately. And he had kept her informed about me. Since he knows the dudes in the clinic very well, he probably knew more than just the letters that they gave me.

    The dentist now sends people with strange changes on the skin inside their mouths much more urgently to the MKGs than before, she said.

    Talking with her was actually extremely cool. Due to her not being one of the doctors who are now responsible for treatment or diagnostic procedures or something, but with her being someone who knows MKGers, HNOers, the clinic, and her also being a competent doctor, it was really interesting to see her reaction to my opinion on the HNOers, MKGers and the treatments.

    You see, when I tell one of the guys who treat me what the HNOers have done to me or that I'm afraid of them now, then they see the need to do something (evaluate the problem some more, find ways to cope with it, and make notes).

    She just nodded and agreed empathically. (She also doesn't like to get a tube stuffed into her nose.)

    Basically the same reaction that you get from fellow cancer patients, but I don't tend to run into these a lot; and the added bonus was that she's a pro. Having a fellow cancer patient say that he starts to puke when they put the tube into his nose or needles into his veins is one thing. Hearing a pro say basically the same has some more weight.
  16. Lytha's Avatar
    The joys of the recovery of nervous tissue are two-sided.

    "It's nice that there's some re-growth at last!"
    "Aw goddamnit, it hurts and tickles and I'm almost crying."

    Ow. Ow. Ow.

    I wasn't even aware that the top of the left boob and the upper part of the left cheek (right below the eye) were also affected. Oh, and the back of the shoulder, too.

    The regrowth activity started yesterday evening and it does not look like it'll be done anytime soon. And it wanders about. Each affected patch of skin itches/tickles for maybe half a minute, then it's off to the next spot.

    I don't even think that I could do anything. Cooling it seems counterproductive, painkillers aren't quite appropriate. So... ow. ow. ow.
  17. Lytha's Avatar

    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
  18. 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
  19. 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.


    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.
  20. 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.
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