Last day at home

Last day at home

(Warning: This blog post is non-technical but purely personal. I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)

This is the third post in a series on my personal road from first signs of leukemia, through diagnosis and treatment, to, hopefully, full recovery. Click here to read all posts in this series.

This post is about Sunday, September 18th. The day before my hospitalization, my last day at home in a long time. Just a typical last day before a prolonged period away from home. But with a few unexpected things as well.

Mixed emotions

One of my first thoughts this morning was that today I’ll have to pack my bags to take with me to the hospital tomorrow. They have asked me to be there at nine, and with the expected traffic that means I will not have time to pack in the morning.

Now, packing bags is nothing new to me. Especially before Covid-19, I traveled about a dozen conferences a year. I have a bag with some standard travel stuff that I can just pick up, throw some clothes in, and be on my way. Routine. Nothing special. Today will be the same, just perhaps a few extra clothes because it’ll be for a longer period – although my wife can of course replace clothes during her visits.

But as I thought about that, I noticed an emotion that I never had when going to conferences, and also never before have had when thinking about my hospitalization. I noticed that I did not want to go, or that I wanted to postpone it.

Some readers might now think that it’s purely logical to not want to go to the hospital. And of course, I would much rather not have needed to go to the hospital. But I do need to go there. It’s the only way for me to get well again. And until today, I really wanted to get it started sooner rather than later. When I was told the results from my bone marrow puncture were inconclusive and another puncture was needed, I was annoyed as hell. Not because the puncture would have to be repeated – okay, I won’t pretend that the procedure is a ride in the park, it’s annoying, and I rather not undergo it a second time – but because this meant that the start of my treatment was delayed by a few more days.

And now, the day before the start of the treatment, I suddenly don’t want it to start. Or rather, part of me doesn’t. Naturally. I’ll be away from home and from my wife for four weeks. And though it’s impossible to predict how chemotherapy will affect me, I totally expect that it will be rough. So yeah, of course I am apprehensive.

But the smarter part of me, the part located between my ears, still wants to get this treatment started as soon as possible. Or rather, it wants to get this treatment done and me cured as soon as possible, and knows that starting the treatment is a prerequisite for that.

Morning walk

After breakfast and my morning pills (because, yes, I now have morning pills and afternoon pills and evening pills and I am constantly making mental calculations such as “I had my last antibiotics at 9, so the next dose should be … seven hours later, right? … so that’s at 4”) – so anyway, after that I went for a morning walk.

I’ve never enjoyed walking. For me, walking was what I did when I wanted to go somewhere and the distance was too short to take a car or a plane. Not something you do just for fun. But when I got my diagnosis one of the questions I asked the hematologist was whether it would be smart to take as much rest as possible while awaiting my hospitalization, or whether I should start doing something I’ve not done for many years: exercise.

Her suggestion was to definitely exercise, but not overdo it. It’s okay if I need to increase my breathing. But when I notice my heart rate goes up, I need to take a break.

Since that day, I have taken two walks every day. They are not very far. They are definitely not very fast. And I have to take breaks and sit down from time to time. But I do take them. Well, except Thursday and Friday, the two days of my last hospitalization.

I had been lucky with the weather before, it had been dry and sunny and the walks in the forest near where I live had actually been quite enjoyable. But this morning, the sky was grey and there was a near constant drizzle. Not really the ideal circumstances for a walk in the woods, so instead I just made a short-ish walk in the village.

Masked visitor

When I was back home, my daughter called. She asked if it was okay to visit us today. She will of course also visit me in the hospital, as much as my condition and the hospital’s visitor policy allow, but she wanted to visit before I get admitted. However, she added, she did have a very mild cough. Not Covid-19 – she had already done a home test. Probably just a cold or nothing at all. So she wondered how I felt about her visiting. After all, she is aware that I really should not get any infections right now.

We (my wife and I) considered the options and decided that we really wanted to see our daughter if at all possible. So we agreed that she was welcome, but all of us would wear medical masks, we would maintain distance, and she would not stay for more than an hour.

Near the end of her visit, we noticed that our house cat, Lion, behaved unusual. We once had four cats, but three of them have already passed away. Lion is the last survivor of the bunch, and already 20 years old. And we suddenly noticed something seemed to be wrong. He kept returning to the litter box and then walk out again. Or he would sit as if peeing somewhere in the room and then we would see one or two tiny drops. He meowed in a moaning way, and he didn’t walk with his normal stance and energy.

At the vet

Obviously, as soon as my daughter drove off we took the cat to the vet. So glad that vets have weekend duty too!

I had one huge fear. Lion is already 20, quite old for a cat. He has several health issues as well. We know he won’t last long anymore, and if the time comes we will definitely grant him the favor of a painless goodbye, as much as it will hurt us.

But all I could think was: “Not now, please not now”.

My wife is very attached to Lion. Not saying I don’t love that cat, but her bond with him is much stronger. It will be hard enough already for my wife to be living in our house every day for the next day and be reminded, every day, of that one thing missing: me. I cannot imagine how hard it would hit her if she had to process the death of Lion at the same time.

So I was really insanely relieved when the vet told us that Lion had a bladder infection, and that she would inject some meds and give us more meds to give over the next days to make that infection go away.

I still know – no, I should really write: we still know, that Lion is at the end of his life. We know we’ll have to say our final goodbyes to him in the near future. But at least not today, not this day, not at the very day of the start of my hospitalization.

Video work

The injection the vet had given Lion clearly took hold very soon. His behavior was back to normal, he ate and drank normally, and was back to being his usual self. So now it was time for me to also return to normal.

Already since the start of my disease, I had dropped first most and later all client work. But I still continued to work on my private projects, such as the Execution Plan Reference, and the Execution Plan Video Training. And as part of the latter, I had completed the initial recording for the second chapter of the basic level of block 3 (the chapter on the Nested Loops operator) in the period between my first hospitalization and the unexpected second hospitalization caused by my bad tooth.

That had been good timing. I had been able to use some of the time in hospital to get a good head start on the first round of editing. At this point I should probably admit that I have for a short amount of time considered throwing it all out. My voice sounds less energetic then it normally does, which is of course obvious because I simply have less energy. And if the volume is set high enough, an annoying background hum is audible. But I decided to just keep it as is, for this time. For a practical reason. So that I can do stuff when in hospital, if I have the energy and the will power to do so.

Whenever I record a video for the Execution Plan Video Training, I want it to be perfect. So if there are places where I mispronounce a word, or where a too annoying background noise is heard, or where I notice any other mistake that I cannot fix with Camtasia’s video editing tools, then I mark that part of the script and re-record it later. I find it’s most efficient to first finish the first round of editing, then do all the necessary re-recording in one go, and then use the editing tools to cut and paste the two together until it appears as if I am able to record a 40-minute script without making even a single error.

I obviously cannot take my recording equipment with me to the hospital. So I really wanted to finish the first round of editing today, and get the re-recording done. That’s why I had worked hard to finish editing in between the moment my daughter called to ask if she could come and the moment she arrived. And once back from the vet, I retreated in my recording room and re-recorded all the fragments I had marked for a do over.

And once that was done, I decided I had done enough productive stuff for the day.

Last evening at home

I played some games. I watched some totally irrelevant stuff on YouTube. I sat down with my wife for a last dinner together for the time to come. And after that I returned to my computer to finish this blog, that I have been writing all during the day.

I still have one thing left to do. Pack my stuff. The thought that started my day still needs to be put into action. So after posting this, I will fill a weekend bag with several sets of clothes, my shaver, chargers, a new toothbrush, tooth paste and shampoo, and some light reading. I’ll pack my laptop later, because once I am done packing I will spend the rest of my evening as a normal, relaxed evening at home – the same way I spent my afternoon, playing computer games, watching stupid videos, and perhaps wasting time on one or another internet forum.

I have already set my alarm to wake me at seven. We’ll need to be in the car at eight-ish, so that even if traffic is heavy I can still be in the hospital at nine.

But that’s for the next episode in this diary / blog.

Leukemia diary
A badly timed toothache
First day in the hospital

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8 Comments. Leave new

  • Wilfred van Dijk
    September 19, 2022 09:00

    Veel sterkte en een spoedig herstel toegewenst!

  • i wish you a speedy recovery Hugo. I am reading about your health the first time and i have several mixed feelings. But somehow i know the fighter in you is going to fight this off ! all the very best.

  • Andy (@SQLBek)
    September 19, 2022 16:08

    BIG HUG Wish there was more I could do to help you through all of this Hugo.

  • I am glad Lion is on the mend. Hopefully, he will last well past your recovery to help your wife deal with your absence.

    If the doctors didn’t mention it, you may need physical therapy after your treatment due to the muscle atrophy from your hospitalization. Any exercise you feel able to do in the hospital, you should try to do to minimize the rehabilitation needed afterward. Your going for those walks over the weekend was a good idea. Any walking you can do in the hospital will help. Even from bed you can try leg lifts and such if you have the energy.

  • Mr N E Jellis
    September 20, 2022 00:07

    Wishing you all the very best for your treatment Hugo.

  • I wish you the very best Hugo. I have stepped back from the community to deal with family issues for nearly a year, so I just found out about your troubles.

    Leukemia is not an easy thing to deal with, but I hope you have a quick and successful recovery. I wish you and your family strength, support, and hopefully a bit of humor poking out of the mess somehow!

  • Hugo Kornelis
    September 21, 2022 09:55

    Thanks, everyone for your very kind and compassionate comments. I will not respond to each individually, but I have read them all, and I appreciate each of them!

    September 21, 2022 21:38

    I wish the best about your treatment Hugo. So much encouragement


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