2025-11-13

I was so afraid...

I have no family (never married), no children, no siblings, no close relatives, almost all my friends live abroad, no cat, no dog, no goldfish. I have only my mother but she's 93, very frail, and won't be with me for much longer. I've been taking care of her but a thought kept eating at my mind all the time - who's going to take care of me when I grow as old as she is and am unable to take care of myself? My mother kept saying, "you'll go to a nursing home". There is one problem with this idea - who's going to pay them? I have money; that's not a problem - but what if my mind starts failing? I could start imagining all kinds of nonsense (I've seen it happening with my grandmother, decades ago) - e.g., that they are trying to scam me - and could decide to stop paying them, after which they'll kick me out.

In addition, I have three different eyesight problems, each one of which is likely to make me blind. One of them has already started happening but it is developing slowly and when it becomes advanced, it can be solved with eye surgery. Unpleasant, but needs must. The second one is genetic (my mother has it). Once it starts happening (it hasn't yet), if it is discovered early, it cannot be cured but it can be treated, its development can be stopped - at the price of an injection in the eye (ugh!) every few months. The third one cannot be predicted, stopped, or cured. If it happens, the eye becomes completely blind and there is no solution. However, the probability of it happening can be reduced significantly with laser surgery - and I've had that done already. Still the three problems combined are very likely to make me blind one day. And without my eyesight, I'm worse than dead. I've experimented using my computer with a screen reader but I just can't make sense of it...

Well, it's one of those good news/bad news moments, folks...

The good news is - none of the above is going to happen. Yay!

The bad news is, I have cancer.

Oh, wait, there is worse news: now I have something in common with Joe Biden. I don't think that I'll be able to survive this thought...

But let's start from the beginning.

Nobody in my blood line (and I can trace it six generations back) has had cancer. I know of only two relatives who have had some form of cancer - and they are not blood relatives. Nevertheless, I've been afraid of this disease pretty much since I was a six-year old kid and read about it for the first time. Makes sense - a disease that is deadly, incurable, and accompanied by horrendous pain - what's not to be afraid of?

My doctor knows about this phobia of mine and each year tests me for prostate cancer, probably just to make me feel better. It's an easy, non-invasive test - the blood is tested for something called PSA (prostate-specific antigen). Every year, my readings are within the safe limits. This year they were slightly above the upper limit - the safe limit is 4.1, the test showed 4.8.

"No way this is cancer," said my doctor. "In cancer patients this reading is at least 16-20. But, just to be on the safe side, I'm sending you to an urologist."

"No way this is cancer," said the urologist. "This test often gives false positives - e.g. from prostate inflammation."

So, he's treating me for prostate inflammation (despite the lack of any symptoms) for a week and has me take the test again. This time the reading is slightly lower but still above the safe line - 4.43.

"It's probably nothing," said the urologist. "Just needs monitoring. But, if you want to be on the safe side, get an MRI scan."

Of course I want to be on the safe side when cancer is involved. It's just that all these tests take time - it's been more than a month since the initial blood test and more time is needed until the health insurance approves the MRI scan. But eventually I take it.

The computer-generated diagnosis is "PI-RADS 5". Translated to the language of mere mortals, this means "90% probability of cancer". Uh-oh.

With such a diagnosis, a biopsy is strongly recommended - to know for sure and also how bad the cancer is. It takes another two weeks to arrange and also means that I have to spend three days in a hospital - which isn't exactly trivial, because, as I said, my mother is very frail. She needs me. She doesn't have the strength to open a bottle of water that I have bought for her from the supermarket... So, I have to arrange for someone to call her daily and check if she needs anything while I'm away.

The nurse that checks me into the hospital and takes a blood sample tells me not to worry. "Your PSA is low." "Yeah," say I, "but the MRI...". "Yeah," she says, "how much is the PI-RADS?". "Five," I reply. "Oh..." she says and immediately shuts up.

So, I have a biopsy taken (under total anesthesia, because it's very painful) and on the third day am sent home. The results will take another two weeks, then another week until the oncology commission of the hospital gathers, examines my case, and recommends a treatment. So, another month passes until I get the results and bring them to the urologist. Of course, I read them first. The probability of cancer is now 100%. Worse, the Gleason score, which measures how aggressive the cancer is on a scale between 2 and 10, is 8. This is bad. Like, very bad. After the MRI, I had no doubts that I had cancer but was hoping for a Gleason score of 4 or at most 6, in which case the cancer can be carried even without treatment for a decade or more.

"OK, doc," I tell the urologist, "I know what 'adenocarcinoma' is and what it means when the Gleason score is 8. Tell me something that I don't know."

The doc looks at me sideways and says "You read too much". Yeah, I know that one too.

Anyway, the recommendation of the oncologist commission is "removal via surgery after a CAT scan". I opt for a PET scan instead. It's more dangerous (I'd be subjected to higher doses of radiation) but it's more precise. I ask the doc, "Do you think it likely that the cancer has already metastased into the bones?". "No way," says the doc, "we took a 20-point biopsy. Of these 20 points, only 4 had cancer cells, and only one had 90% cancer; the rest were 60%, 40%, and 30% respectively. This suggests that the tumor is small and isolated."

So, I start arranging for the PET scan. I'm given an appointment in another month. Can I pay out of my pocket, instead of waiting for the bureaucrats at the insurance to approve it and have it done for free? No, you can't pay, and even if you could, it wouldn't be any faster. It uses a radioactive Gallium isotope, the stuff used in nukes, and contrary to what Doc Emmett Brown might think, they aren't selling it in every pharmacy. I'm given a manual, which instructs me to avoid being in the same room with pregnant women and small children for 24 hours after the procedure because, you know, I'd kinda be glowing in the dark. This scan all by itself has a 1-in-20,000 chance of giving you cancer.

So, I have the scan and then wait for another few weeks for the results. They show that my cancer has metastased to a lymph node and a rib. Since I read too much, I already know that metastases, combined with Gleason score of 8, mean a 30% chance of surviving the next 5 years - and that's the most optimistic prognosis. Basically, it's bye-bye time. But I have an old and decrepit mother to care for, so of course I'm going to do everything the doctors suggest, in order to delay the inevitable.

I bring the scan results to the urologist. He basically washes his hands off my case and tells me to have surgery, as the commission recommended. This surgery is kinda risky, because the area is packed with vital organs. It is the least risky when assisted by a robot (unless the robot is ransomwared, I presume). But the hospital that has been testing me so far doesn't have one. So, I have to go elsewhere. I book an appointment with someone who does this kind of robot-assisted surgery - but he's overbooked and will see me no earlier than in two months.

Meanwhile, I'm thinking. I have cancer, right? So, I need a doctor who specializes in cancers - i.e., an oncologist. So far the only doctors I've talked to were my personal physician and the urologist. Both of whom were grievously wrong in their predictions, so I'd like to see a specialist. Of course, there was the oncologist commission that signed off on the surgery recommendation - but I never saw or talked to any of them. So, I get an appointment with some oncologist my personal doctor recommended, who is reportedly very good and well-known in this field. Of course, he doesn't work with the health insurance (probably because he hates bureaucrats), so I have to pay just for telling him "G'day". But that's not a problem.

The oncologist looks at the recommendation I was given and reacts rather forcefully to it. "This is nonsense; you have a stage 4 oligometastatic cancer; surgery is pointless. You need to start hormonal therapy." He sends me to take two new tests first.

The first one of them is straightforward - measuring the testosterone levels in the blood; it's done in a day. I understand its purpose - the hormonal therapy destroys the testosterone-producing glands, because testosterone "feeds" the cancer cells, so the hope is to starve them. The other test however...

It's something called BRCA. I've never heard of it, so I start reading. Apparently, it's some kind of genetic test that determines the presence of two genes, which lead to increased risk of breast and ovarian cancer. WTF?! While men sometimes (rarely) do get breast cancer, it is perfectly known where my cancer is - and does it look like I'm at risk of getting ovarian cancer?! On the top of it, it's very expensive (and I have to pay it out of pocket) and needs another 3 weeks to get results. Fuck.

While waiting, I visit another oncologist, for a second opinion. Thank goodness, he tells me pretty much the same thing - surgery is pointless, you need to start a hormonal therapy. On the subject of the BRCA test, he politely says "Uhm, I probably wouldn't have required that." No kidding.

Remember the first test? It's ready in a day. But it shows that my testosterone levels are below normal. So, I have a disturbing thought. My testosterone is low but my cancer is very aggressive. This suggests that it develops without enough testosterone just fine. Which means that the hormonal therapy (that relies on starving the cancer by killing the testosterone glands) is unlikely to work. But what do I know? I'm a computer virus expert - not an oncologist. So, I start reading.

The literature suggests that I am right. In cases like mine, hormonal therapy is not guaranteed to fail - but is very likely to do so. The recommendation is to combine it with another therapy (radio or chemo) and/or monitor very closely how things are developing, in order to catch early if the therapy is failing. Well, makes sense.

So, three weeks later, armed with the test results (good news: the test shows that I'm not likely to get ovarian cancer) I visit the big-name oncologist again. He glances at the results and starts prescribing the hormonal therapy - some injection that will implant under my skin a container that slowly releases the medicine, and some pills.

I hesitantly voice my worry that my testosterone level is low yet my cancer is aggressive, so the therapy is likely to fail. This visibly annoys the expert. "There are international guidelines that I have the legal obligation to follow," says he. Oh, well. At least I have the consolation that I'll die according to the international guidelines. I'm not scared of death - but this kind of cancer goes into the bones and once it does, the pain will be horrendous. (Death will be caused by the tumors entering the spine and destroying the nerve centers that control the heart and the lungs.) Plus, I really don't want to leave my mother alone. She can't take care of herself and will never agree to go to a nursing home, so the fight now is to prolong my life at least until she dies.

I wisely don't ask the oncologist how long I've got to live. Mostly because I already know the answer. As mentioned above, the most optimistic prognosis is a 30% chance of living 5 years after diagnosis. The most realistic prognosis is 8-12 months. The truth will be probably somewhere in-between.

I ask him if I need to get some tests, in order to see whether the therapy is working. "Only after 3-4 four-month rounds of this treatment," is the answer. Are you fucking kidding me? We have to wait a year, in order to check if the therapy is working (or, more exactly, to see that it isn't)? I might not live that long! I have to endure another lecture about the international guidelines, blah-blah-blah. Oh, well. Let's be optimistic here - it seems that the expert thinks that I'll live at least for another year. Personally, I have my doubts.

The doctor writes a prescription for the injection with the slow-release medicine. He warns me that the medicine must be administered by an expert, not just anyone with an "M.D." after the name. It's because the injection contains some kind of spring that ejects under my skin a container that slowly releases the medicine - and if the spring is triggered prematurely by an incompetent operator, the whole thing has to be thrown out and I have to buy a new one. No worries, doc, I'll come to you for this.

The doctor's office is at the 8^th floor of the hospital. The pharmacy is, of course, on the 1^st floor. So, I trot downstairs and present the prescription to the pharamcist. "We don't have that," says the pharmacists. "I can give you an equivalent medicine that is called something else." Will that be just as good? How the fuck should I know? I need to ask the doctor who prescribed the original medicine. Can the pharmacist please phone him and ask? No, of course not. That's my problem; he just sells medicine. So, I trot back up to the 8^th floor. (There are 5 elevators in the hospital, but there are also huge crowds of people going to the various floors, so it's faster to move on foot.) Of course, by now the doctor is busy with another patient, so I have to wait for half an hour in the corridor with no place to sit. Eventually, the doctor appears, so I request one bit of information. Can I use this other medicine that the pharmacy happens to have? Yes, you can. Trotting back down to the 1^st floor, I buy the medicine (it's not cheap but nothing shocking) and trot back to the doctor's office for him to adminiter it "expertly".

The doctor takes me to a room dedicated for such manipulations, has me remove my upper clothes and lay down on a cot, then proceeds to inject me with the poison, sorry, I mean the medicine. I can't see what he's doing; I just feel a small prick as usual when you're being injected with something. "Whoops," says the doctor, "it seems that we've hit a blood vessel." "Who's that 'we', doc?" I think to myself. I'm laying down on the cot, afraid even to breathe, so that I don't disturb your activity, I don't even see what you're doing, and there are no other people in the room.

He gives me a pice of cotton and tells me to press it at the place where the injection was done. I have experience with this - you have to do this when they take a blood sample and if you don't press hard and long enough, you get a huge blue spot under your skin. After a minute, he gives me a replacement piece of cotton. What the fuck for? I'm still laying on by back, so I can't see anything. But now I lift the old piece of cotton in order to replace it with the new one and I see that it is deeply soaked in blood. I've been injected many times during my life but I've never seen the result bleed so much. Good thing that the injection was administered by an "expert". The doc searches for a piece of adhesive dressing to put on the wound. He can't find the right one, so he uses some weird U-shaped one, which is clearly meant for some different purpose, but whatever. I am instructed to come back in a week, in order to get the pills that are a second part of the hormonal therapy.

The pills are in a huge box, maybe a foot long. I have to ingest that in a month, 4 pills per day. Then I'll get another box and so on. It's not something you can buy at the pharmacy. It's something you can get only from the special pharmacy of the hospital (in an underground bunker) and it's probably very expensive (it's free for me, unlike the injection), because I have to present an ID and sign a declaration that I'll return the empty packages (probably a precaution that I won't sell the medicine on the black market).

I ask the big-name expert about possible negative side effects from the medicine. He shrugs it off: "Even aspirin is listed to have side effects. Don't worry about it". Doc, this thing sure ain't no aspirin, or it wouldn't be dispensed with more security precautions than live ammunition. "Weeelll," muses the doc, "don't read too much or you'll just get scared". Doc, I've already read it and am quite scared - that's why I'm asking. "Nothing will happen during the first month," assures me the doc and leaves me hanging.

At this point I'm furious and vent my frustration to a nearby nurse who happened to witness the conversation. The nurse takes pity of me and sends me to another, much younger doc, who will explain me everything.

That doc is indeed friendly and helpful and warns me that I might get a rash, in which case I must call them immediately. He also mentions fatigue, muscle pain, constipation, diarrhea, spasms, nausea, weight loss, birth defects (I kid you not; don't try to make any children for at least three months after you've stopped taking the medicine, by which time you'll be dead anyway), and a whole lot of other unpleasant things. But I've already read quite a lot on the subject and he isn't covering all the stuff that I've read about, so I keep prodding him. How about pain in the testosterone glands that this thing is going to destroy? Oh, yes, that can happen. How should I treat it? A regular painkiller like analgin or paracetamol would do. I've also read that this thing can cause acute osteoporosis - to a degree that you can break a bone just by exercising. Oh, yes, agrees the doc, that can happen. (Then why the fuck didn't you tell me?!) Anything I should do about that? Take 800 UI vitamin D daily and have your bone density checked once a year. (Yay, this guy too thinks that I might last a year.)

Anyway. After 7 months of delays for this and that test, at least they've started some kind of treatment. It is likely to fail, as explained above, but it's at least something and let's take things one step at a time, shall we...

2025-12-04

It's been a month since the hormonal therapy started, so I'm due for another injection. Go to the hospital, register, have the doctor write a prescription, go to the pharmacy, buy the medicine, go back to the doctor for him to administer it, done. Simple, right? Well, if you thought so, you're a naive fool.

Meanwhile, the hospital has done some, erm, "re-organization". The registration process, which used to be free, now costs money. About 30 euros for, I kid you not, "administrative services". That sum is not a problem for me but it is a non-trivial amount of money for many of the people who have come and who just don't happen to be carrying this amount of cash with them (and who had no idea that they would be required to pay for this). In addition, the whole procedure which used to take 1-3 minutes in the past (show me your ID, which doctor you're visiting? tap-tap on the computer, done) now takes considerably longer because there's a bunch of papers to sign, so there is a huge line. I spend 45 minutes waiting on this line just for the privilege of paying 30 euros and having my name put on a list. The woman in front of me breaks down in tears, because even after digging out all the yellow cents from her wallet, she's still a couple of euros short. I take pity of her and give her the missing amount.

After successfully registering, I go to the doctor's office for him to write the prescription. Hopefully, not for the medicine that the pharmacy doesn't have but for the other, equivalent one. Whoops, here we hit another snag. The doctor is not there. That office is shared by 3 different doctors and right now it is used by one of the others (some woman). Where is my doctor? No idea, go check in the oncology department (which is nearby).

A spot of luck, I see my doctor in the halls. He vaguely recognizes me (probably because I'm the only person consistently wearing a mask) but isn't sure what exactly I'm doing here. I remind him that it's time for my monthly injection, so I need a prescription. He starts writing a prescription, gets my name wrong because he misremembered it and didn't bother asking, so he has to scrap it and start again, all the while consulting some colleague of his on the phone about treating a friend of this colleague, which friend is apparently under the mistaken impression that she's somehow special and can be treated differently (like, more expeditively) than the other patients.

Eventually I get the prescription and trot down to the phrarmacy. Guess what? The pharmacy doesn't have this medicine this time, either. But, but, but... I need this injected today! Well, this sounds like a problem - but not like the pharmacist's problem. Still, she informs me that they are likely to receive the medicine some time in the afternoon (between 14:00 and 17:00, maybe), asks me for my phone number and promises to call me if/when they get it. Do they have the other one - they one they didn't have the last time? Not a chance; you won't find that anywhere. Any chance that I'll find this one in another pharmacy? Maybe, depends on the pharmacy.

So, instead of going back to the doctor to administer the injection, I take the bus back home (I don't have a car) and start trawling the nearby pharmacies. After a few times of the routine "g'day, showing the prescription, do you have this?, WTF is that? tap-tap on the computer, nope, we don't, kthxbye" I hit a spot of luck - one of the pharmacies has it. So, I buy it and take the bus back to the hospital.

All this takes time. I've started early in the morning but after waiting 45 minuts in a line to register, looking for the doctor, visiting pharmacies, bus trips to, from, and back to the hospital, each taking 30-40 minutes, it's way past noon. I catch my doctor but he doesn't have any time for me, he has to attend some kind of consultation. So, he directs me to the nurses - which really makes sense; administering injections is something the nurses should be doing.

Sure, no problem, says the head nurse, but you have to pay. Sure, no problem, say I, where? On the 1^st floor, of course. Of course. So, I trot back down, pay the equivalent of 20 euros, and trot back up. The nurse tells me to wait in front of the same room where the doc injected me a month ago, so I go there. Some other nurse arrives in a minute to take care of my problem - but when she opens the door, the room is occupied by some other patient. Whoops.

No problem, I'll wait. Afer all, I've been mostly waiting for more than 4 hours since the morning. When I wasn't travelling by bus or trotting up and down the stairs, that is. After a while, a third nurse appears and takes me to a hall, which is filled with people older than me, sitting in chairs, with systems dripping poison down their veins; I guess they do chemotherapy here.

There is a cot in one of the corners that can be enclosed by curtains. The nurse takes me there, closes the curtains, has me remove by upper clothes, asks me at which side I've been injected the last time (because now she has to inject me on the other side) and proceeds to inject me. She does it much more expertly than the doc. I don't feel a thing and there is no bleeding. I compliment her for her work and make sure to tell her that she clearly has more experience with this kind of stuff than the doctor. She smiles.

She tells me to keep laying down for 5 minutes, pressing the spot on the skin that was injected, and disappears. Barely a minute has passed and a fourth nurse appears. What are you doing here? Well, I was administered an injection and... How long ago? About a minute and... Why is your head up? You have to be laying down and relaxing! Well, because some nurse is talking to me and I have to lift my head to look at her, and the fucking cot has no fucking pillow! Get out! So I do and head home. In about a week, I have to come again and visit the bunker for the next big box of pills. Wish me luck.

I'll update this page if there are any important changes and I am still able to do so.