Lytha's Blog

Sooo...

1. hole is a perfect circle again, and significantly smaller than last time. However, it's more or less exactly 4mm now, which means that the MKG was right and that I didn't measure it precisely before. Not looking at it for 5 days gives a better feeling of "it heals, phew" than looking at it every 2 days.

Still, given that there'll be chemo and radio next, I guess the hole will be with me for quite a bit longer now.


2. Due to the better mobility of the unshackled tongue, I could look below it last night, investigating what hurt on the right side. In the mirror of my bathroom, I saw something there that looked quite like the cancerous tissue had looked like.

To remove any kind of suspension right away: in the light of my bedroom and with a handheld and thus closer mirror, it turned out to be just a weird tissue that had grown a bit into length. I sometimes had taste buds grow in size like that before. Must be nothing worse than basically a pimple on the tongue.

Anyway, I then had 30 minutes of living through what seemed to be a case of "what do I do when the cancer returns". This is absolutely not looking good: if it returns at some point, I'll probably just give up.



3. Anyway, I am horrified, actually, I am mortally afraid of the idea of being in an oncology in less than 20 hours from now. And I still need to pack my bag(s). I'll need 2 bags, because I'll take my cuddly pillow with me.

Thinking of you and hoping things aren't too ****ty!

Hiiiiiiiiiiiiiiii

I am back home! (For another 45 hours).

This oncology was perfectly alright. The staff was extremely, and I mean *extremely* nice. All of them.

The rooms were 2 beds at most.

As a reminder: I had heard the worst of this clinic. "this is where people go to to die!! don't go there!". It's an admittedly shabby building from the 60s, and yes, the room doors hadn't been replaced just since then and they looked shabby. And yes, the toilet was on the corridor again, but this time, it was just outside of my room. This meant that I heard the other mobile lady walk to the toilet each time, but who cares - as long as I don't get my own diarrhea into my pants, because the toilet is too far away, I don't mind to hear that other people use the same toilet.

Now well....

Monday

I arrived at 8, got the room. The other bed was empty, so I had the room all for myself all day. According to my own rule of "I don't want new cancer grannies as new friends", I stuck to my room on that day and on the following days - the short glimpses at those 50kg on 1.80m men was more than enough to tell me that I really didn't want new cancer friends.

They then did two anamneses chats, first the nurse, then a young guy who had just finished university and no doctor title yet. He was in his practical year. Both of these talks were extremely thoroughly done.

Not much more happened except that I got shuttled to the radiation - or, as I now know, the "tomotherapy" - that's how they call themselves. This intra-clinic shuttle is an awkward and annoying business. It only drives hourly. And it's always 10 minutes later than the full hour/half past an hour. It also does a full tour via all the stations of this university clinic that aren't up on the hill yet: oncology, dentist clinic (MKG ambulance and tumor control happen there), children's clinic.

So anyway, to the scheduled tomothera at 16:00, I had to take the shuttle at 14:30 (14:40 real arrival time), because he'd arrive at 10 past the full hour, and that would've been too late. So, I went in there at 15:10 and the assistants stared at me and told me to go on a walk for at least half an hour.

And then happened first a chat with Dr Letter (as a reminder: he's one of the radiation therapists, or let's call him tomotherapist. I suspect that *he*'s the next candidate for another Stockholm syndrome, by the way), and the first radiation.

The first radiation was the worst. My heart was racing, I had a hysteric coughing impulse at around half time, and they had a bright light on my face, tracing where they were shooting the stuff from - they were recording this on camera, I think. This bright light caused quite some warmth. Also, the mask didn't fit well, because the nurse had told me to keep the shirt on. Yes, those 2 mm of fabric make a difference as of how tight this mask is.

Anyway, the tomo was done at 16:55, they called the shuttle service, and they forgot to take me along. I sat in a deserted entrance hall and wondered and wanted to hide and cry, but I couldn't move away from there to ask someone if they really had called the shuttle or to go to the toilet. After half an hour or longer, one of them noticed me and started to harass the shuttle service via phone. They also kept me somewhat company so that I didn't feel all alone.

This didn't change the fact that I had to take the shuttle at 18:10 instead; which is an extremely long waiting time, apparently.

Yeah well, back at the oncology at 18:40, the doctors and especially the chief doctor were gone home already. So much about getting introduced to them, or about being part of what they decided to do next with me.

Instead of this, I received a bottle for more urine collection (the only explanation I could assume for this one was the the oncology ambulance up on the hill hadn't managed to send the reports down to the oncology), and the order to collect it for another 24 hours.

The night was not very good, because there was a confused old lady next door, sleeping with the door open. And she had either a radio or a tv and this was on. Also, she was too retarded to press the red button to call a nurse. Instead, at around 22:00, I suddenly heard a disturbing "hello"..... "hello"...... "hullo"..... every couple of minutes. First I thought it was from down the street, then I pressed the button for her and told the night nurse that someone was saying "hello" every once in a while, either from the toilet or opposite rooms. She located this very quickly. Next, there was a loud and long discussion between this nurse and the granny... with the door wide open. The more radio.

I fell asleep a while later, and the night nurse entered the room at exactly that moment; scaring me quite a bit. ("eeeep!" *spasm*)

3 hours later, she looked again into my room ("EEEEEEEEEHHH!" *spasm*)

Explanation: she was doing her job extremely well ("check what the patients are up to or if they just died or something"). I was alone in the room, so I didn't expect anyone to open that door at night: Roomies go to the toilet and come back in. And here at home, no strange humans enter my bedroom at night as well. Sure, it's retarded of me to believe that a burglar would be impressed by me screaming at him like in a horror movie, but whatever.

So... summary: No chemotherapy on Monday. A very disturbed night of sleep. A very disturbing first tomothera. No names or faces of the doctors in charge known yet. No idea what was supposed to happen next. The urgent impression (24 hour urine collection bottle) that this would in fact NOT be over anytime soon.


These are the ingredients for bad emotional reactions from my end.

Tuesday

Tuesday started, after the nurses had done the usual (measure blood pressure and temperature), in a bad fashion as well.

The young doctor-to-be came in with a sheet of paper about coloscopies and the introduction of it as "as you know, there'll be a coloscopy done tomorrow at 8:15" - "WHAT?" (yes, I had told him about this colitis ulcerosa the day before, but he apparently had received it as far more active and worse than it currently is. So, the doctors had agreed that this needed to be checked out, in my shuttle-induced absence.) I let him to his appointed job of explaining the risks of this medical procedure and accepted the paper. No, he wasn't forcing the signature out of me right away - that's at least something good.

After this, my emotional state was critical. Imagine being downright ANGRY+AGGRESSIVE and utterly DEPRESSED+CRYING at the same time. An extreme example of the "fight and flight" effect of sympathic nerves. (the asympathic ones are for feeding + sex). "fight and flight" yes, but "flight" wasn't quite possible, because I mentally *agreed* that I wanted to get the chemo done. I did NOT want to move in there and have them unexplainedly check out body parts of mine that had no immediately obvious connection to the reason why I was there though!!

And Mr Newbie couldn't or wouldn't tell me the connection (which was there, in fact. But more about that later.)


The 24h urine collection turned out to be just a 12h collection, but that didn't do much to improve my state.


In this emotional state, I hastened over to the dentist clinic to have the MKG say something about the lesions at the bottom of my tongue, as the tomotherapist had told me to do on Monday. ("this might be the start of a fungus. Ask the MKG at the next opportunity.)

I had to wait 10 minutes to see the ladies at the front desk and cried about 3 times during these minutes and was aggressive during the rest of the waiting time. I was in the aggressive state when I reached the front desk, but I apologized for being verbally mean. I'll apologize some more next time I see her. She told me to go on a walk for 30 minutes and that they'd call me in to the doctor instantly then, no waiting time in the waiting room.

So I went and cried in the toilet for 5 minutes and had some enraged and crying phone calls with friends and my sister (the physician).

It might have been helpful that the MKG, as a super-surgeon, just ignored the emotional hurricane and looked at the physical problem. He just gave me some paste and stuff to apply it with, and told me that no, it's not a fungus. It's lesions from the fluoridization (clean the mouth excessively with clear water after each of these and remember to have it done here as soon as you think it's time).

Back in the oncology, I was actually in time for the doctors' visit ... or they had waited until I was back and went to me then.


I didn't know their names or their status, so I just talked to the one who initiated the conversation ("how do you do" *shake hand*) and ignored the rest at first. I went at him directly with the issue of the coloscopy. Two others piped in during the conversation (one turned out the chief (afterwards), the other had probably been on station doc's business on Monday), so I talked to them as well. I must admit that I wouldn't even recognize the others at all, and not remembering faces is really unusual for me.

After some exchange (no, I did neither cry nor insult them, but I told them that this medical procedure meant DELAY for NO reason in my opinion and that I had been told that this clinic experience would only be 1.5-2.5 days and that I felt like being lied at and that all of this reduced my compliance to tell anyone anymore in the future about things that MIGHT be relevant somehow, and no, the colitis isn't active and dramatic now and no it does not requite drastic medical interventions right NOW, and yes, I would tell them during the next 6 weeks how my defecation is like) (no, I didn't tell them that "they could also do a MRT of my left foot now because they could do a study about that as well"... that was during the phone call with my sister)....

Their line of thought had been: If the liquids leave the patient's body via the colon instead of via the kidneys, then the patient will suffer the kidney damage side-effect of the Cisplatine. Our newbie had written that patient has diarrhoa, a somewhat active colicis ulcerosa, AND blood in the stool (I had some of that, last Wednesday. ONCE. The newbie had written it in a way that suggested that it was ALWAYS bloody.)

After this exchange they somewhat agreed and accepted that they had to cancel what they had scheduled for Wednesday. I had to sign that I refused this medical procedure. I am not going to make a habit out of this, but in this case, I think it was appropriate.

I know that I did not give a good initial impression there, but I was in that emotional state and it really was not appropriate.

My then freshly arrived roomie also got a strange first impression, I fear, but oh well.


Instead of more diagnosis (which would have been ridiculous, because the chemo is supposed to boost the tomothera, and that one was already in progress!), the chief came into the room not much later and told me about the chemo and the variants and listened to this odd patient who also bluntly refused to accept that they could also inject the chemo into the left arm (fear of the side effect of a vein being crap and the stuff entering the muscle, not the vein). So, he scheduled the following:

- since there are 3 ways to boost the tomothera with this chemo (1x/weeks 1+5; 1x/weeks 1+3+5; 1x/weeks 1+2+3+4+5+6) and patient got angsty with this last variant, he at first ruled it out. Then I asked about the likelyhood of the side effects and it turned out that 1+2+3+4+5+6 use much less concentrated poison, and this reduces the chance to get deaf and to get kidney damages quite a LOT, we opted for this.
- this means in combination with ****ty veins and a patient who hides her left arm when someone enters the room on the search for a vein, that they need a different means of pouring the chemo into the patient. This is the "port" thing, because you do not want to do a central vein catheter every week.
- appointments at the surgeons next day to tell me about the "insert a port" procedure
- sonography of the blood vessels in the shoulders
- appointment with the anesthesician.
- 1st chemo for the evening, after the tomothera
- release from the oncology on Wednesday, as the guy in the oncology ambulance had told me. Both because I had voiced that this was a massive issue for me, and probably also because they witnessed what my appetite did as the time spent in the clinic increased: from a completely eaten meal on Monday down to maybe half eaten meals on Tuesday)

You see that these oncologists have more experience with patients who are on the very edge of going nuts because of stress and illness than the surgeons do. The MKGs might've done what they had planned (they have a godlike and superiour intellect and education, after all ), no matter what arguments the patient offered, and might've thrown in some sedativa drugs.


At noon, I heard that they planned to do the sonography right away, but they didn't manage to do this until I had to take the shuttle to the tomothera.


Then I got a needle into a vein (MKGs are better at this, they can do this with the small ones at the back of your hand and don't have to use the big and nice vein in the ellbow; however, it was fixed in place much better than the MKGs managed. It was as if it had been glued to the spot. No chance for anything) and was off to the tomothera again.

The second session was a lot more bearable than the 1st. Also, I didn't have to wait for the shuttle this time.

I also asked if I could talk to Dr Letter again about my couple of questions (like: "what do I do when I have a coughing fit? Signal that there is a problem and that they need to stop??" - "nah, just when it gets really bad and you have to sit up or something")


Once back in the oncology, a nurse approached me immediately that I was about to get the 1st chemo indeed during this night.


Now the chemo....

0. Some pills against sickness.

1. 1l of water with some NaCl (that's cooking salt) and some more electrolytes during 2 hours. This lasted actually about 3 hours, because it didn't want to flow in at first very well.

2. A wild assortment of 3 bottles of medicine, must've been another 1l of liquids. There was cortisone, and more stuff against sickness, and something else. Also, another pill or two against sickness.

3. 0.5l of NaCl (step #2 and #3 were done in about 1 hour; this night nurse knew exactly what she was doing and how long each infusion would run)

4. "last opportunity for a bathroom break"

5. the night doctor then applied 2 more infusions: (a). more NaCl, (b) the Cisplatine itself
(1 hour)

6. another 0.5l of NaCl (this was inside of me after another hour or so, but the tube was removed much later at night because I started to fall asleep when the Cisplatine entered - too much stress and "fight or flight" had happened inside of me during the entire day already. Stress me enough, and I'll fall asleep, it appears.)


I went to the toilet about every 2 hours that night. Not only had they infused a lot of liquids, but I had also continued to drink some water, because the mouth was dry.




So much about Tuesday.




I'm going to clean my mouth now before writing another wall of text about today's events. Not because anything was bad, but only because it's time for the big cleaning.

Oh, the roomie was perfectly nice. A mix of breast+lung cancer, both apparently not related to each other. Both accidentally found by doctors taking x-ray pics of her torso after an accident that she had had last easter.

She snored somewhat, was in the "underweight" range, and looked about 15 years older than she was, but she was nice. So yes, I made another cancer pal.



Wednesday

Before breakfast, nobody knew my schedule for this day.

During breakfast, I learned that I was supposed to take the shuttle at 9:40 (i.e. leave the room at 9:15, because you never know if the shuttle arrives on time or even ahead of time for once), to go to the surgeons and have all of the stuff done, then stay on the clinic grounds on the hill and go to the radiation. And once back, they'd release me instantly.

Yes, that's a day without lunch. A really long day.

Day #3 of a clinic's visit apparently kills my appetite until I am down to "almost half a slice of white bread with cheese, then I'm done". Well, I did take the cocoa with me though.

Anyway... the surgeons occupied me from 10:10 to 14:00 indeed.

A student did the anamnesis this time, and I made him nervous because I was looking over his shoulder while he typed, and I corrected him. He made more and more mistakes as this went on, until I apologized for each correction. But no, you see, I don't take Iodine. I take Thyroit (sp) supplements because half of the thyroid gland was removed due to an autonmous adenoma some years ago. I also don't take it at a schedule of "100-0-0" (100 pills in the morning, 0 at noon, 0 in the evening).

I also had several satisfying communication exchanges that day; it already started with the shuttle's driver... who made the experience that yeah, you can chat all along the way with a patient from the oncology. Not all are in an emotional turmoil and just stare into the air most of the time. This guy thanked me in the end when I left, for a "very nice and interesting conversation". Doh.

With the surgeons, I had something along the lines of:
he: "Yeah, you're right, these are really rare side-effects. But you see, some patients actually seem to go for these small chances, just like with the lottery. Chances to win there suck, but everyone plays the lottery anyway."
I: "I am not stupid, I don't play the lottery. Do you? As a doctor, you should be smart enough not to do so."
he: "nah, I don't."
I (to the student who was listening to the conversation: "do you?"
student: "uhm... no"

This was funnier in the conversation itself than here on "paper". Ah well.

Or:
he: "this side effect hasn't happened in the last year here in this clinic."
I: "you're supposed to say: 'this hasn't happened here in the clinic in the last 20 years', you know"
he: "yeah, I know. But I don't yet work here for more than a year."

Or:
The guy who'll poke a hole into me next Friday: "Well, we'll see each other on next Friday then!"
I: "... uhm. YOU'll see me next Friday, but I suppose that I won't see you!"

The surgeons also seem to have pen-stealing habits. One has forgotten or mislaid his pen. So he asks someone, for instance the student, if he has one. As a result, the student has no pen anymore and must find another one from someone else, because the doctor with the pen has run off.

I suppose that after a few days of this, the pen-less person will come across his old pen again.


Ooooh, and mystery solved concerning the colour code. Dark blue is the surgery room outfit for the guys who wear bright blue when not in the surgery room.

So, the dark blue guys in the MRT must've been anesthesicians for the intubation of that baby patient, not technicians or something like that.




Anyway...


Sonography revealed something disturbing: there's a thrombosis where the central vein catheter had been. This explains the odd shape of the veins in my right upper arm, and this means that this vein is off-limits for the port.

Also, it revealed that one vein was stolen from my left shoulder during the total neck dissection of that area. I hadn't been told about this, but so it is.

Two other shoulder veins remain as possibilities for the port. They'll most likely go for the other one on the left side, because there are already scars (I had some liver spots removed there a long while ago), and surgeons like to use old scars as entrance points, it appears.


Another funny and somewhat remarkable occurence: The shuttle driver and I hadn't been alone on the way. In the back of the shuttle, there had been two other people. I had randomly glanced back at some point, taken in the way the lady looked like and asked the driver: "and this lady is for the MKG, right?" he (surprised): "yeah, she is".

When I was sitting in the surgeons' waiting room, this lady slowly entered and asked the front desk ladies where she was supposed to go now. It appears that she couldn't find the way from the shuttle to the MKG clinic, and thus slowly waddled to somewhere else. It wasn't even totally random: this building also has some stations with funny names, named after doctors of this clinic, probably those who are of some renown. So, one of the stations is named after the chiefiest of the chief docs of the MKG. The lady apparently remembered the name of this chief doc from her chat with him of the day before, and had asked random people where to find something called like this doctor. Well, almost nobody knows how the doctors of another building are called, but several knew the name of this station.

I listened to this (yes, I am curious), recognized her, and then went to them and intervened and told them my above hypothesis, which was actually proven to be correct.





At 14:00, I was free and wanted to hunt for a café or something, so I followed the map of the place and the "café" icon. I didn't find this café, so I asked some random people in white and was pointed to a bistro, where I had no difficulties at all about consuming some fries and a cocoa. 100% of it. I am sure that I wouldn't have managed to do more than nibble somewhat at the oncology's lunch - and I have to say that the food in the oncology was MUCH better than that they served in the MKG.

This is where the 7kg disappeared to, I suppose.


3rd tomothera was not bad at all. I almost fell asleep during it.

However, there's a mild sunburn-like thing on my throat now, and the scars are looking funny. I think it may be good that I'll have a 3 day break this week (no tomothera after a surgery! + weekend). Yes, this extends the tomothera for longer than 6 weeks (6+1 day now), but it gives the skin some more time.



Yeah, and then I was released from the oncology. I had the opportunity to ask the chief doc some more questions, they removed the needle from my arm, they gave me the paper, and waved goodbye.

The cats were extremely glad to see me, though Geordi was also unhappy that I had left them alone for so long (he assaulted my sock-clad feet a few times with his paw). They had been fed by friends yesterday and today.



Plans for tomorrow up to saturday:

- Dentist clinic. I'll get the other kind of fluoridization, because this won't do anymore. I've a lot of more ulcerations in the tongue and at the front of the gums. Or maybe it IS a fungus, what do I know.
- Also, the MKG can look at it again and repeat his diagnosis, if the guy at the Prothetik thinks so too. The stuff that he had prescribed DOES help to soothe the pain, but there are a lot of more white spots now than before.

I simply had NO time to get a pro fluoridization done so far this week, and the bloody teeth need their fluoride now. Daily.

- some grocery shopping
- back home, sleep + eat
- taxi to the tomothera at 15:15
- back home, eat until 22:00, sleep
- don't eat or drink anymore after 22:00
- taxi to clinic at 6:15ish
- get a port
- stay over night, let the guys show you how heparine (because of the thrombosis near the heart) is injected and make up your mind if you can do it to yourself or not
- leave clinic next saturday.

This roomie was different than all others before. Wheelchair, dialysis, artificial exits for the wasteproducts, QUITE a personal history, 10 years younger than me. We got along quite well, but she talked a bit too much and without an ending point in the end, when I could already leave the premises. I'll visit her again though, if she's still there next Thursday.

Soooo well. I didn't blog yet that on last Thursday, the radiation machine went on strike just after it had taken my daily CT, did I? That was fun. 3 hours longer for the radiation than planned; and they only insisted that I should wait so long so that they'd get a 4 day week for me instead of just a 3 day week - everyone except one of the assistants agreed with me that we wouldn't do a radiation therapy setting after a surgery (that's what was going to be done to me on Friday.)

On Friday, I had my surgery, the implantation of a so-called "port", which is like a small balloon or cushion at the front of the shoulder, above the breast. It has a tube leading straight to the area infront of the heart. Infusions are from now on entering my body through there, which means less hassle with the veins. Less clumsy poking. Less pain when the vein just decided that it's enough.

Whatever they gave me just before the surgery, I am not sure. It must've been Dormicum or Tavor... Tavor more likely, because Dormicum is usually injected, I think. Anyway, I didn't go to sleep. I was wide awake and my mind was clear and I observed the proceedings with a lot of interest. This was apparently a bit abnormal, because one of the nurses made some remarks about how alert I was. He then quizzed me about my name, address and such, which I found a bit weird, but I just answered him. A bit spooky that I probably would've also given him my phone number or my PIN numbers if he'd asked me... so I wasn't completely clear at that point after all.

I then had an entertaining chat with the anesthesician as well, who hoped that I'd go to sleep before he went for the veins - I didn't please him in that regard though, which led to a really very well done needle in the vein. You know, when you're asleep, then they just poke around and give you bruises and all, but when you're awake, they apparently do a good job after all.

And I didn't even fall asleep when there were already 2 or 3 of them in the room and they put the inhalation mask on my face. Because I kept breathing through the throat instead of the mouth then. The mask went on and off at least 3 times in total until I finally was gone.

On the way back to the room I caught the dosage of the painkillers (2g Novalgin), and that meant a bit of trouble for me later on.

Because the surgeon (not the one who was supposed to do this one, but a female one, but also alright) came to talk to me, and I was apparently coherent and alert enough to tell her this dosage and other stuff, so that they relied to the radiology that I was in perfect shape to get another radiation treatment. Which I really was not. Clear mind != readiness to have that mask put over my face and to spend half an hour in this stressful situation there.

So, at 16:10, a transport arrived for me towards the radiology. I really don't get this, and I WILL talk with Dr Letter about this on Monday. They'd have ended up either with a crying, hysteric person who refuses to be pushed into the room; or with a crying, hysteric patient who just acquired a new phobia and whom they'd have to sedate and possibly fixate for the next 5 weeks for each radiation treatment. Total bull****.

I managed to get rid of the transport and to tell the two nurses who then came to assess the situation that they should phone with Dr Letter instead of the extremely pushing assistant and talk with him about it. Apparently, so they did, because I was left alone for the rest of the day.


Yeah well. I am now supposed to inject myself with heparine from now on for a couple of months (?) because of the thrombosis that the central vein catheter had caused next to my heart (on the right side of my chest), and because this new port can also cause thromboses. Awesome, I am so looking forward to poking myself with needles. I got 2 of them with me now and will get more from my physician on Monday, or something.



So, the wound next to the port hurts a bit, the port needs some adjustment yet (backpack and port? hrmm), and I am wobbly on my legs. I'll go and do some grocery shopping in a few minutes and then just collapse for the rest of the day.

Illness attracts advice from freaks.

A couple of weeks ago, some lunatic on youtube told me that all I'd need to do now was to "find god" and to "trust in god". I told him off for that, gently, I hope. I know that he was trying to help and just doing it an the stupidest kind of way imaginable - but yes, some other people, even my sister-in-law, poked into that direction a bit as well. Seems to be normal for religious people. I normally just let them do whatever they want, but I expect that they let me do also whatever I want instead of doing this "let's convert an atheist" stuff.

So, right. This lunatic now switched from the preaching to "you HAVE TO eat at certain times of day", "you HAVE TO sleep when the sun is down".

Stuff that probably helps him to get through life, but why the **** does he think that this is automatically valid for everyone, especially for people of who's situation he knows next to nothing? And in the "HAVE TO" fashion as well.

This reminded me of the "helpful comments" of a certain poster here at GWO, actually... the comments that I removed because they pissed me off too much, even the sight of "you can't see this comment because he's on your ignore list". "You HAVE TO drink tea to calm your nerves" or whatever random stuff he pulled out of his back orifice.


Anyone seems to have some advice.
- From "use maltodextrine now"
- to "sage leaf tea will help"
- to "manuka honey will help"
- over to "you could also try homeotherapy"
- over to "you know, just TRY to consume half a bag of this liquid goo per day, no matter what"
- or "you really should get a psychotherapist right NOW"
- or "absolutely try and get disability NOW"
- or "you really NEED to get these vaccinations now"
- or whatever.

Even professionals aren't above this; some of the above came from the semi-pro's. The real pro's don't give ****ty advice or they atleast dress it as "you COULD" instead of "you HAVE TO".

The stupider and less experienced somebody is, the more likely that you get a "you HAVE TO" kind of advice.

Well... this makes them easier to sort out, doesn't it.


I mean, I HAVE TO do certain things now indeed. Such as
- see the physician in half an hour (oopsie, need to go soon)
- go to the tomothera at 16
- get a chemo tomorrow at 8:30
- go to the tomothera at 16 tomorrow (and the rest of the week)
- see a MKG sometime this week
- get a fluoridization sometime this week, preferably Wednesday.
- plus eat something each day, clean the cats' litterbox, don't forget to sleep


Why do the Stupid People (tm) try to put more stuff onto this list of absolute necessities?


I mean, I am likely to turn obsessive-compulsive about stupid stuff anyway, like this "I must measure the size of the tracheotomy each time with a ruler and take notes about it", or "I must watch my weight now!!!! omg, half a kg less today!!! catastrophe!!"

... speaking of which, I should work on the latter. I knew that this would happen, and this was the reason why I normally do not have a set of scales here at all.

Of course it's not good to lose 10% of the weight in a month, but I am relatively sure that the oncologists and tomotherapists will have an eye on the weight anyway. If I obsess about it, I suffer more stress and am less likely to eat like a normal person.

Another really social idea I have at the moment is that smokers should pay at least half of their cancer treatments themselves.

You know, here in my country, it's always in the news about "exploding costs of the health care" and such. Some of this is normal because people here get older and older, and older people need more health care than the young ones.

But then you see people like that smoker who I met last week:

"Yeah, I am looking forward to be back at the clinic after today's radiation treatment. I am so going for a smoke right away."

Smoking dimishes the positive returns of the radiation therapy. It's not just common sense that says so, but it's also written in the papers that we patients had to sign before the treatment, and I am sure that studies have proved this effect.

So, essentially, this ****er is wasting money of his insurance by putting obstacles into the healing process.

So, why again shouldn't he pay for the treatment by himself, or at least cover a nice and significant amount of it?

I am sure that even idiots like him would stop smoking straight away at the sight of some bills for all the treatment - I am sure that each radiation is accounting for 1000-3000€ each, since it includes a quick CT á 500-1000€ and then the radiation treatment itself after some calculations.

Also, from a scientific point of view, uncompliant ****ers like him mess up the mortality rates, making it more difficult to see if the new therapies really work better than the previous therapy methods.



Same goes for the last roomie I had, that (ex?)-drug addict. Speaking of heroine here. She had dialysis, wheelchair, and whatever else - and I am sure that her smoking habits didn't help the therapy either.

Either increase the cost of the cancer sticks to a reasonable 3-4 digit number per packet, or let the ****ers pay their doctors' bills themselves.

20% tomothera done. 24 times left.
20% chemothera done. 4 times left.

This time, I got sick. Not funny. Also, it's from 8:30 to 14:30 at the least; this time, it was longer because I was vomiting and they had to stand in a circle around me and to try to make up their minds what was the next choice of activity.

I don't know why they didn't just pour the anti-sickness stuff into me BEFORE the cisplatin...

Pharmacist didn't have the stuff that I am supposed to take against the sickness, too... so I guess I'll spend the day vomitting.

OH yeah, and the logopedician appointment overlays the time when the pharmacy opens in the morning. So, no pill in the evening, no pill in the morning.

23 times left. (7 done)
math for the chemothera is off, it's 2 of 6 done. Is that 30% already? Awesome.


I need one of these "chocolate thingies for the time before christmas" for right now. You know, those with 24 little doors and 24 pieces of chocolate behind them. Alright, I am already at 23 times left now, but no matter.



I received another vomex infusion + 1l NaCl today, took a cortoid thing, took 40 MCP drops. Of course, the pharmacist didn't have the other sickness-killers, the ones that supposedly are the BEST. I'll get these tomorrow.

Hopefully, I'll be able to get some calories into myself now, but I am torn between sleeping, showering, or eating.



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

Come on, let's try and cover this with some humor.

How about splitting the **** into small titles?


Chemo, rank (2/6) - "I received chemotherapy and I puked out my breakfast in front of the entire assembled staff"

Radiation, rank (7/30) - "My mouth is very dry"

YEEEEEEEEEEESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS

THIS MKG WANTS TO SEW THE ****ING HOLE SHUT NEXT WEEK IF IT ISN'T GROWN SHUT THEN BY ITSELF!!!!!!!!!!!!!!!!!!!!!! (which is unlikely, given that it was ~3mm in diameter yesterday and given that I haven't seen the brown goo for a week anymore.)

Also, he seemed somewhat amused or weirded out that I started to complain that they have removed the left muscle at the front of the throat, because it looks totally crappy now. He said that there are ways to restore the look somewhat, but that we should wait a bit with that. "A bit" meaning 1-2 years. (Patient doesn't complain about the scars, the crooked tongue, and mostly not about the numb ear, but patient complains that the muscle is gone? And for cosmetic reasons, at that??? Patient is weird.)


Chemo Sickness mostly gone. It returned somewhat because of exhaustion - biking to the dentist clinic was not quite a good idea, though I insist that it helped with the claiming of the paper for the insurance from the physician. Without a bike, that'd have been quite a hike. With the bike, I was there in 10 minutes.


Next radiation to come in 6 hours. I'm going to z-squish something in the mean time.

Wow, it seems I missed quite a bit!
Will look into again later when I have more time since need to dash off now (I've been postponing a visit to a friend for weeks now because of my stupid ankle - it's finally healed, it ended up taking much longer than I hoped) but just wishing you well for radiation that's coming up later today!

Oh, did you play with GW DressUp?

GW DressUp? I totally missed that, sounds like fun.

http://argos-soft.net/GwDressUp/

Some of the things I created with it:

Second post, due to the 4 image limit:



That's pretty much all I log into GW for these days. ;)

Radiation (8/30) - "I got radiation therapy and didn't fall asleep in the taxi on the way home, but I got a sick 'sunburn' today"

26.6% done! That's more than 1/4! Woot!


Ah I see. Hrm, I am reluctant to run programs that mess around in other programs' memory buffer. I use stuff like that for Dwarf Fortress, of course, but I am really reluctant to use such programs with GW.

Your dudes look great though.

Radiation (9/30) - am I at 30% now?

Well... taste buds and the cells in the nose are so badly damaged now that everything tastes like cardboard paper. Some food actually gives me vomiting impulses now.

Also, the salivation glands are badly effected already.

I'm wondering at the moment if there's a wound in my upper jaw already.

According to the tomotherapist, the taste and smell will return about 6 weeks after the treatment is finished. Ouchies.


Salads seem to be still possible to eat somewhat.

I guess I am really in for some weeks of hell now, eh. Well, for 4+6 weeks of hell. Oh for ****'s sake. :(

I know it's probably pretty poor comfort, but imagine the sensation when, after months of not being able to smell and taste anything (or everything tasting and smelling funny), you'll start to experience that side of food again!
And yeah, I am weird that way!

Yes, I know, upier.

Someone at youtube actually said something similar: "I'd be looking forward to relearning how to speak. I am weird, I know." That issue wasn't that bad, luckily (though my tongue is about to turn a lot more sluggish now due to the starting inflammation of the mouth, so the s, z, st, sp, sch, z, tz, tzt and l will sound crappier now than before).


It would help if I knew what untreated cancer does to people, I guess. I don't know that, so I only know that the radiation and chemo have already managed to make me feel worse than at any time when I had that tumor in my mouth.


Anyway... I was just lying in bed, snuggling Julian in my arms, when Geordi assaulted him for daring to lie around in my bed. Geordi doesn't really realize that Julian is usually abducted into the bedroom against his will, you see, and Geordi is a very strict landlord of us two. His house rules include that nobody but him is allowed to lie around in the bed with me.

Now I got a cut at the back of my left hand. Nothing unusual, really. That happens when you have two neurotic cats. However, I wanted to make a note when I got this cut - to see how much slower wound healing is now.

I had a similar scratch on the left arm and noticed on tuesday that it was still looking really bad, but I had forgotten to take a note when I received that one. I don't actually think that I even noticed it when I got that one... doh.

Current status:

- 2x3.5mm. There was some attempt at healing some more during the weekend, but now the new cells are going to be nuked again all week.
- 60kg, according to my set of scales.
- possible to eat: cooked veggies (veggies are wet enough and have enough structure on their own so that it's possible to chew on them, even if they taste like nothing), cheese like mozzarella (soft and wet enough to gulp it down before it becomes too disgusting), milk, cream, vanilla ice.
- funny white spots on the inside of the lower lips, side of tongue and back of mouth. Pain level 1-2 on the nice pain scale 0-10. I am not sure if I should go and see the MKG today or give the radiation madmen a chance to prove how they can handle the damage they do. Given that I need someone prescribe me some Novalgin this week before the real fun begins on Friday night, I think I give the madmen a chance now.
- sick of fear at the moment. Fear is about the chemo this week, the radiation effects that are to be expected this week. Also, I think I need to talk to a pro about my emotions; ideally someone about whom I don't have that paranoid idea that I will end up after the chat by being hospitalized, restrained to a bed and drugged up with sedativa (because of risk of suicidality, or at least damage done to self.)
- the fact that they made me give myself injections into the tummy does not help at all too. I did go through a time when I hurt myself in my adolescence, I still got the scars. That is years and years past and I just don't think that weakening the resistance against "must not poke anything into my skin" is such a great idea in combination with the emotional reactions to the current therapies. Yeah, of course. I could drive up to the clinic each morning to get the injection. What a wonderful and practical alternative.


Current recurring thoughts:

"When I was 15, I said that I'd rather kill myself after a cancer diagnosis, instead of having doctors torment me to death. That was more reasonable than I apparently was when I agreed some weeks ago that they'd give me the current treatments."

"I won't survive the next 4 weeks anyway, so why shouldn't I just leave it at that instead of allowing them to make me feel even worse?" <- I am relatively sure that I'd end up with the police/emergency doctor breaking down my door if I don't go to the treatments unannounced though.



Yeah.... anyway.... I mentioned to my parents that I'd like one of those "chocolate pre-christmas-calendar-thingies". These things aren't yet on sale in the stupid shops. Mother misinterpreted the message as "she wants the chocolate"... which is not the case. I am sure that chocolate is one of the things that taste like **** at the moment due to lack of wetness and consistency.

She sat down and made a thing with 21 bags filled with chocolate. Really nice, if I would have wanted the thing for the chocolate.

It does not have the effect of "only 21 doors left to open" that I wanted though, not at all, because the bags are hanging around as a mess and invite Geordi to rip them down anyway.

Sooooo.... I think I go to the paper store and get me some cardboard sheets and make myself a thing with 30 doors or something. Or 30 numbers and a HUGE red edding pen to cross out the ****ers.


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


The white spots are according to the MKG aphthous ulcers. I didn't have those in 25 years, omg. He thinks that I need to tell the radiation madmen that I need the stuff that they give all their victims so that they suffer a bit less.

Also, I don't have to pay anymore for medicine, quarterly doctor costs etc, because I finally went to the insurance and had all the papers with me. This is for until the end of the year, for now.


Oh yeah, and this MKG was the guy who did the total neck dissection on the left side. I verified his name and yeah, he did it. He's the one who stole the vena carotis (or the other one), the muscle, and who numbed my ear. He seemed a bit reluctant about admitting that it had been him (you never know if a patient wants to bite off your head or something?), but he admitted it alright.

He also felt empathy, apparently. I mean, how ****ty can it get? Aphthous ulcers, for ****'s sake... plus a still open trach, plus sore throat, plus weight loss, plus apparent knowledge of patient about how funny the next few weeks will be.

He didn't display the empathy in that fashion that annoys me (the pro "displays empathy", as he has learned in some lecture), but he didn't hide it in the surgeons' kind of fashion either.