Last words

It’s amazing how fast things are happening now.  The entire year 2020 was a walk in the park, full of happiness, activities, travels, playing, working, all that.  Late last year, things took a turn for the worse.  The doctors have scrambled to keep up since then.  Now they have given up.  They’re giving me a few weeks to live.  In a way, this is reassuring.  It means that the doctors and I fought until the end.  We didn’t stop a moment too early.  I’ve done everything I could to beat the cancer.  I took all the opportunities I had.  The cancer was stronger.

My therapeutic options are exhausted now.  What this means in detail was the topic of a conversation I had yesterday with my oncologist and the head doctor of the palliative care unit.  Flucha was there as well.  I reiterated my wish to be at home as much and as long as possible.  For the moment, this is not a problem.  I can still take care of myself.  The doctors predicted it wouldn’t stay that way.  Decreasing liver function, caused by rapidly growing metastases, will give me increasing troubles, from tiredness over weakness all the way to confusion.

Flucha is willing to handle all this, but will she be able to?  Will she have the time or the strength?  Even with my mom joining us in a week, this might be difficult.  Good thing there is a care service we’ll be signed up with.  They’ll come as needed at first and then more regularly later.  It looks as if this aspect were under control.  I’m not worried about this.

I’m more worried about the progression of the disease.  What symptoms will I suffer?  How brutal will it be?  The doctor told me pain shouldn’t be an issue.  They will provide me with a range of painkillers in various strengths to keep me largely pain-free.  I’m surprised how little pain I’ve experienced up to this point.  Maybe it was the years of suffering up steep climbs on my bicycle that have stunted my perception of pain.  It looks as if this aspect were also under control.

How am I going to die?  The doctors had no answers on this.  “The cancer is in the driver’s seat”, they said, as if this explained anything.  It’s clear that the liver will play a major part as it is the organ most affected.  It could be that diminished toxin clearance will slowly poison me.  But what would this be like?  It could also be that I get another infection, some gut bacteria in the blood.  What then?  The doctors said they might decide not to treat with antibiotics at all.  “The cancer is in the driver’s seat.”  But if they won’t treat me, I wouldn’t need to go to the hospital in the first place.  I could just stay in bed when fever and the shivers hit me again, and wait what happens.  I could put myself into the driver’s seat and say, goodbye, I’m dying of sepsis now.

Whatever happens, it’s clear that there’s only one road to walk down now.  There are no forks and no intersections.  The destination is clear.  This morning, I’m feeling quite good, with enough energy for this post.  I don’t know how many more such days I’ll be enjoying, and how much more I’ll be writing.  Maybe these really are my last words.  The word count of this blog stands at just about 99,000.  I was never one to chase arbitrary goals.  If I won’t reach 100,000, it wouldn’t change a thing.

It’s been a most unexpected, crazy, terrifying and ultimately terminally frustrating journey.  It still boggles the mind how I ended up here.  Thank you for being with me throughout.

Dying man

After I went home on Saturday, things seemed normal – whatever counts as normal these days.  I felt weak and spent most of the time in bed, only appearing occasionally for some meals, to meet certain physiological needs, and to watch an episode of Sherlock on Sunday night.  When I had lived in London, I had followed Sherlock, but the last three episodes aired after I left, and I have never had the chance to catch up.  Neither the fever nor the shivers returned.  It seemed that all was good, or at least on its way toward improvement.

On Monday morning I got a call from the hospital.  They had identified the bacterium in my blood.  I needed to fight it with intravenous antibodies.  The ones I was taking, big pellets not unlike what Maria and her friend are made to swallow in Maria llena de gracia, were no good.  I went, on the bus this time and with the bag for seven days.  There was not much action in the patient storage area that I had first encountered in February, but things took long.  At least the bed was comfortable.  Eventually, I was wheeled up to the eleventh floor and then through a door ominously labeled palliative care unit.

The unit was nice, a bit more pleasant than a regular hospital ward, with pictures of flowers on the walls.  Everything was calm and relaxed.  I got a room all to myself.  The nurses are even more attentive than on other wards.  They always ask if they can do anything good for me.  This sounds almost like a piece out of paradise, but reality is graver.  I had just crossed the threshold from being a very sick patient to being a dying man.

For me, this was only a confirmation.  It didn’t shock me.  I had come to the same conclusion on Saturday.  The CT results, the morphine, the hasty release from the hospital left no room for interpretation.  Lonsurf was the last drug on the treatment list.  Now that it has failed, there’s nothing more to try.  I’m out of options.

I had been in a funk about this while I was at home, guessing the number of weeks left to me.  It was one more reason not to leave the bed.  This is all of no use, obviously.  The episode of Sherlock we watched on Sunday made some good points about this.  In The Lying Detective, John Watson comes to terms with the death of his wife who died when saving Sherlock from a bullet shot at him.  By the end of the episode, Watson accepts that “it is what it is”, and there really isn’t much more to say.

What holds true for the death of your most loved one, holds true for your own death as well.  It is what it is, and there is no reason to whine.  For me in particular, there’s no reason to whine.  I have a privileged life, better than most, with two children who are wonderful, and with a wife who always makes me strive to be, another snippet from the screen, the person she sees in me.  (I always fall short.)  What if it all ends now?

Everybody has to die.  There’s nothing to do about it.  Some people die early after short miserable lives.  Some people would probably like to be freed from their baneful existences, perilous, drab, without reward.  I feel I’m about to go too early.  I could fill many more years with exciting activities, and I could continue guiding the little ones in the right direction.  But early or late are just details.  Everybody has to die.

This was the state of mind I found myself in this morning.  Unexpectedly, it turned out a nice day.  I finished all of my meals.  I spent half the day on a chair and not in bed.  I felt better than at any point during the previous seven days or so.  Maybe there’s no point blowing the horn of doom too loudly.  After all, I’m still alive.  The cancer is eating me up from the inside, but there’s still plenty left of me.

Days in bed

One of these times when the posts weren’t flowing, and this time your premonitions were true.  It’s not looking good at all.  On Friday, I spent all day in bed.  I’m doing a proper rest day, I explained to myself.  They have them at the Tour.  For convenience’s sake, I ignored that they’re going on recovery rides on Tour de France rest days instead of lying in bed listening to the radio.  I just lay in bed, alternating between periods of mild to intermediate fever and mild cold shivers.  Something was clearly wrong.  I wasn’t ready to take action.  Maybe it’d be better the next day.

It wasn’t.  The next morning, I woke up Flucha with my shivering.  It was much worse than the day before and scared the hell out of Flucha.  She wanted to call an ambulance and send me straight to the hospital.  I wasn’t scared nearly half as much.  Two months ago when I had to go to the hospital to have the liver stent replaced, the shivers were much worse.  They nearly flung me out of bed, but eventually they stopped and were replaced by a fever.  It was then that I took the ambulance.  I expected something similar to happen this time.

Even though I didn’t join in Flucha’s panic, I could see that a trip to the hospital was on the books.  It was all too similar to the time in February when some bacteria invaded my blood.  While Flucha packed my bag for another week at the hospital, I gradually slowed shivering until I was lying peacefully.  I felt as weak as on the day before, but there was certainly no need for an ambulance.  I would have even taken the bus, but a taxi seemed an altogether more sensible compromise.

In the hospital, I was put on a rather uncomfortable bed and thoroughly examined.  One doctor noticed my somewhat tense and twisted face and asked how much pain I was suffering.  I had to admit that I wasn’t comfortable at all.  My back hurt no matter how I positioned myself on the bed.  It wasn’t pleasant at all.

The doctor wasn’t happy I took ibuprofen at home.  “This is not good for you”, she said.  “Ibuprofen attacks the mucosal layer of the stomach and stresses the kidneys.  It’s time you got a proper painkiller.”  Then she procured morphine and injected a bit with my drip.  It didn’t make me silly in the head, but it made the pain go away completely.  This felt good.

The conclusion of the first examination:  The infection markers in my blood were high.  I’ve probably got a bacterial infection that can be treated with antibiotics.  The liver values in the blood are too high.  There was no word about the why and the what to do, but a CT was lined up for later in the afternoon to see what the liver and its surroundings looked like.

The CT was something I would have wanted earlier than my oncologist who was optimistically going with three cycles of Lonsurf and then an CT, a month from now, to see how things have worked out.  It was good to do the CT today.  My body had long been sending me signals that the chemo wasn’t doing much.  When the doctor came with the results, she confirmed this.  She said bluntly, “There’s no point continuing with Lonsurf.  We see massive growth.  You get no benefit and suffer all the side effects.”

Everything happened very quickly after that.  I was put before the decision to stay in the hospital or go home that very afternoon.  This was curious.  Wouldn’t the doctor want to monitor the infection a bit more closely?  The blood cultures to identify the offending bacteria would also take a day or two.  Had they given up all hope?  The doctor handed me a prescription for oral antibiotics to be taken for ten days and for a bottle of morphine to last a lifetime.  With this I was off, first to the pharmacy, then home and straight to bed.