Direct, straight to the point, while moving on and keeping it lighthearted!
And if you’re on any of the same Slack instances as me, this is why I’ve had that sick emoji for the last 9 months.

This is not a blog post any more, it’s a novel, I will only apologize slightly.

Why didn’t I just say anything earlier? Well, I told some people, I lost track of who I did and didn’t tell… And to be perfectly honest, I didn’t want anyone to worry. I didn’t tell my own family until a few weeks before I got my final diagnosis.

Trigger warnings and forewords

I’ll include some details on what type and such, this blog post may be a bit long, it may also be a bit graphical in terminology, or may be triggering to those who have gone through, or have loved ones going through similar situations. I feel with you, and hopefully if you wish to read it all, it will give you some insights into how things can flip around really fast, but that in the end the professionals know what they are doing and together with them you’ll figure things out, no matter what the final outcome may lead towards. And also that men are idiots and need to be better at seeing doctors.

One of the media elements used in this post depicts needles, I just wanted to be mindful of those who do not like those as well (I am with you, but I also feel like it demonstrates some of what has been involved in a very particular way)

Diagnosis

So with that in place, let’s get a bit serious (but also a bit lighthearted at times still!), at the beginning of October of 2023 I was told I had cancer, although the actual diagnosis was not given until December 20th of the same year (because there are processes and checks and balances you need to go through, they don’t want to start you on cancer treatment if they do not need to).

They caught it all extremely early, thanks to an unnatural level of pain I had started experiencing. As a man, you’re told the tale of checking your testicles and looking for lumps, much like a woman is told to get mammograms and other more intimate tests I honestly do not know the name of. Turns out, you may not always have a lump, but you can have ridiculous levels of pain.

I initially thought I’d done something silly, like sitting down stupidly (as you grow older, the likelihood of that happening increases substantially 😅), but when the pain did not go away for multiple weeks, some days so bad I could not stand upright, I finally decided to see a doctor.

I had some back and forth with them about what the cause could be, I didn’t agree with them, and thankfully the owner of the clinic insisted on sending me to the emergency room as it sounded like it may be a form of testicular torsion.

Be thankful you’re not the one they rush to the front of the line

Once there, and after quite a bit of waiting (I once heard someone say, and I’ve kept it with me in every hospital or doctors situation since, as I find it to be incredibly grounding; “be thankful you’re not the one they rush to the front of the line”), and a quick ultrasonic scan, and I mean quick, the tech barely put it to the painful area before stating with absolute certainty what the cause was, I was given the initial diagnosis.

They followed it up over a few months with regular ultrasonic checks, and then a couple of CT scans for good measure, to see if things changed, if cells grew unnaturally or in weird places.

The first treatment

When they got the definitive answer, things suddenly happened fast for a while, I was given surgery 2 weeks later (the first week of January), after which they grew specimens to find out about type and aggressiveness, once they had the results, I was automatically transferred to Haukeland University Hospital, one of the leading cancer hospitals in the world. That sounds more serious than it is, it’s just procedure to transfer cancer patients there depending on the type, to lessen the workload on an otherwise strained national health service.

I had a somewhat aggressive variant, which meant it had already in that short period of time, spread to lymph-nodes around one of my kidneys. (ironically, the same kidney that gave me a kidney stone 2 years ago, I think that particular part of my body has a vendetta, I also had a few smaller ones as a side effect of some of my medication during treatment, yaaaaay).

Spreading means surgery wasn’t enough, and I had to prepare for chemo. This is the part I’ve been uncertain about how to share, because this is what many people associate with cancer, and it is the most obvious sign that you are being treated for it.

And despite that, I wasn’t worried about chemo. In many ways, chemo is easier for men, not that men are tougher than women, but because the side effects of most types of chemo is the aforementioned loss of hair, and it is more socially acceptable for a man to be bald than a woman. Strange take on it, I know, but here we are.

Chemotherapy

Treatment consisted of 3 treatment rounds, each treatment is 3 weeks, quick math, that means just a quick 9 weeks, no problem, we can do this!

When getting chemo, there are various ways you can get the treatment, I was fairly healthy, and could move about on my own, it was caught early, so I got policlinical treatment, meaning I would walk in to the hospital from my hotel in the morning, check that my IV was still good and usable, then they’d start.

I was fascinated to learn that they custom make every patients chemo, based on height, weight, and type. Obviously the bigger you are, the more you get.

In my case, I was to be given three different solutions, on day 1, 5, and 15 of each treatment cycle, you start off with a small bag, the one most people react poorly to, and also from what I’ve gathered, the one you don’t want to have leaking anywhere because it’s bad stuff. Then the remaining two which were combined into one to reduce the daily treatment time.

Things didn’t quite go as planned.

On the very first day, I was a little bit nervous, I don’t like hospitals, blood pressure and pulse was up from the environment. Policlinic was full, so I was being so lucky as to get treatment at cancer ward, this meant I got to lie in a bed and relax, sounded really nice to be fair.

After doing some breathing exercises that I often use before bed to try and calm down (thanks, Headspace!), I got my blood pressure and pulse down to a level where protocol dictated I was allowed to start treatment.

First you get the saline solution, need to have a decent amount of fluids running at all times, as you need to flush the dead cells and the poison out of your body. They then started me on the first bag, the bad one, things were going fine, surprisingly fine, chemo didn’t seem that bad at all. The administering nurses were just chatting around, we were getting on great, honestly it was a very relaxed atmosphere, especially after that first dose was done with.

Then came the 2nd one, the mix, they start the pump, oh yeah, it’s a pump, not a drip, although the setup is the same, there’s a machine in between that makes sure the right amount goes in and all of that, also very fascinating, I got quite familiar with the machines, which ones had a temper, and how to work them if they decided to act up while I was out eating, in the bathroom, things like that.

Back to the chemo though, as soon as the pump display lit up the number 40 (20?), I immediately felt like I couldn’t breathe, I thought my throat was backed up by the need to be sick (I had heard many people on chemo get bad reactions and vomit), but it also felt like someone was sitting on my chest and I couldn’t catch my breath, even though I was getting air.

Why is 40 (20?) important?

This is the amount of fluid left in the tube between the pump and your body, that means that when they zero it out before adding a new fluid to your system, it takes that much before the new material affects you. This essentially means that my body reacted as instantly as can be measured to that particular chemo mixture.

I say “40 (20?)”, because I must admit, it’s been a few months, and I do not recall the exact measurement between the two.

But holy heck did the nurses spring to, the machine was stopped, and the reaction stopped near instantly, and the reaction kit brought out, and steroids administered, in less than a minute, we were back to nothing, but I had to postpone my day 1 treatment, and stay overnight in the hospital for observation, and they also needed to find out what had happened.

A new plan is hatched

As the next day rolled around, the doctors came by to check up on me again. Oh yeah, they do that, although not all the time, the nurses and supporting staff are who truly run a hospital, and I love them all to bits. During longer treatment, you start recognizing them and knowing them by name, it is almost like seeing old friends again when you return, it’s an odd sensation, and you have a slight feeling of loss when you are done and they’re not part of your daily routine any more.

But back to the chemo, the doctor had consulted senior specialists (again, world leading hospital, very lucky!), and my reaction seemed to be to the chemo called cisplatin, one of the two in the combination pack.

They had adjusted my treatment procedure to account for this, and they felt quite confident it was the root cause. They had a plan for what they needed to do to stop my body reacting, more pre-medication.

I forgot to mention the pre-medication, you take some pills to avoid side effects such as vomiting, and also flu-like symptoms from the smaller but stronger bag they start off with.

My new setup involves anti-sick drugs, another one I do not recall the name or purpose of but which allegedly would make me very drowsy, and a good dose of steroids to combat the drowsyness. I recall a nurse at one point being surprised at the levels of medication given to me, as the steroids were usually limited to 12 units in a 24 hour period when hospitalized, and I was given 20 units within a 5 minute window.

Funnily enough, the steroids made me sleepy, I slept through most of my treatments, but would, for the most part, get up to go eat, but towards the end of the week I was so dead tired, and the nurses kindly brought me food in the treatment room. My treatment time was now 8-9 hours per day of sitting in a chair having poison pumped into my veins.

First chance for some recovery

First week was over, my parents picked me up by car and drove me home, 4.5 hours one way, they were shocked at the state I was in, I was so knocked out by the medication that I could not have been sent on public transport as had been the plan of our patient transport authority (I later got my doctor to sign off on me always needing to be accompanied, so we could get at least a little bit of the travel cost reimbursed, but me and that travel authority… we are not friends).

Once home, I had a week of really not doing much, I was tired a most of the time, my parents and me would have dinner together every day after they got off work, this both helped me have someone check in on me, but also ensured I got food in me and I didn’t just sleep the day away. I think my ability to eat on a fixed schedule helped me appear somewhat well off throughout my treatment.

Without food, you have nothing to regenerate your body with, and although I lost my sense of taste, and some tastes and textures made me feel sickly, I still ate even if I ate less. What tasted something, what made me feel unwell, it changed from week to week as cells tried to regenerate, or were broken down further by continued treatment.

Again though, it’s fascinating how the body works, and what you can do to it and still recover.

The first real scare

the week passed, day 15 came, I had my chemo booster, and then I waited again. I do not remember if it was Friday or Saturday night that week, I was to return to Bergen where the hospital was that same Sunday, I had an incident.

As I had just gone to bed, I had just looked at my phone as I often do when I get into bed, I like to check the news, and then I read a little in my book, my arm locked up, my hand cramped, I lost my phone, and my entire body decided I had to roll over to the left. I had no control.

I can remember my thoughts.

“Oh no, this isn’t right” as the cramp hit.

“I’m alone, and I am dieing” as I rolled over and felt my consciousness fade.

I woke up 2 hours later, I know this because I had my phone still, I knew the time I had looked up the news. My tongue was swollen, I had bit it quite hard it would seem. I had soiled my self (really not holding anything back here).

I was confused, and worried. I had a shower, I called the hospital, who told me to call A&E, who told m,e to stop by and they’d have a look. (I would later get a personal apology from the Bergen hospital, as they did not properly assess the severity since they were so far away, but they should have sent an ambulance at once).

My father picked me up in the middle of the night and drove to A&E with me, where they ran me through some tests, said all seemed fine with me, and then said they’d send me to the emergency room as they could do other tests.

I left the doctors office, I started walking down the hallway with my father in front of me, and my arm shot out in front of me, it locked in place, I can swear I said “oh no”, but I don’t think I uttered a word as my body was not mine to control. I cramped up, and I tipped forward, I was not there when I hit the ground.

I next woke up inside a CT machine, same procedure as last time I had again bit my tongue more, the whole shebang. I was lucid, I could answer questions while in the machine, but I do not remember leaving the room, the next memory I have is at the neurological ward of the local hospital.

I had just gone through two seizures in a few hours, I was tired, my brain was not where it should be. My parents were both here by now, had been told preliminary findings by the doctor, information I did learn until today, 6 months later, maybe that was for the better, we may never know. They first thought I had developed a large brain tumor. I can not imagine how terrified my parents must have been at that point.

I did not know what was happening, other than my body suddenly stopping to work at this time, I remember needing to use the toilet really bad, and a nurse leading me, I remember it being a successful trip, my bed was in the hallway, only a few meters from the bathrooms, on my way back, it happened again, I could have sworn my arm went out to protect form the fall, my mother says I covered my face, I guess my brain and my body wasn’t communicating that well, but it’s again fascinating how the body protects it self in such a way.

I don’t remember hitting the wall on my way down, but I next woke up in the MRI machine, again perfectly lucid when I woke up, but this time with a small bandage on my head, and a couple of stitches I was told.

Some answers at least

The MRI and CT combined now gave a much clearer picture of what was happening. I had suffered two brain bleeds, likely from my two falls, and I had blood clots in my brain. Take note of that plural “s” there for the blood clots, I did not pick up on that, I thought I only had one until today when I had my checkup. They were causing epileptic seizures.

The cause of the blood clotting was unknown, was it the cancer, the chemo, a combination of them, or just really bad luck that I was predisposed to them and they hit just now? They now feel confident in saying it was the combination of the chemo and the cancer causing them, but at the time we had more questions than answers.

The scans also showed a growth in my sinuses, just to add to the fun. This meant I needed a spinal tap to look for infection, I was also on seizure medication now, and blood thinners. The blood thinners had to be administered morning and evening via injections in my stomach (or other fatty areas of the body).

I’ve never liked needles. Over the course of my treatment, I grew to really fear the needles, that spinal tap probably didn’t help much at all. My blood pressure went up, and I got started on medication to keep it low as well, as I was transported back to Bergen to continue my cancer treatment.

When I came back there for round 2, they first needed to check up on that sinus growth, they did not feel comfortable breaking down my immune system further without knowing what it was, as they had experienced fungal growths hiding like that in the past.

I appreciate their caution, but it meant I was scheduled for surgery a few days later. Again, fascinating stuff, the vein finder the anesthesiologist used on me at that time was a mini x-ray with a tablet that showed everything in real time, including as he stuck the needle in, and he could see that it entered my vein, and that it was secured proper. I look away when they stick the needles in, but I had to peek at the tech, I couldn’t help my self.

The procedure was fascinating as well, they went in through the nose, everything was done through the nose, there’s no external scarring or anything, it’s all internal, I wish I knew more about these things at times. I of course was not awake for any of this, but they were happy to tell me more, I also had one of my new nurse friends with me who was a sponge to new knowledge and loved learning everything new from every possible aspects of the hospital.

We were now ready for round two. I had been very unlucky so far, reacting to treatment, the sudden onset of the seizures and the need for injections multiple times a day, so I was now admitted to hospital for each treatment period. This meant I had a lovely room, I got all my meals there, and it just felt much safer than having to move my self between the hospital hotel and hospital every day.

I discovered that my shoulder had taken a few bad hits in the falls. Sneezing would move it around, it would not fully leave the socket, but it was bad enough that they had to sedate me for the pain at least once that I remember with “the good stuff”. My post-treatment papers show that they recommend physical therapy after cancer treatment is over and tumors are confirmed gone. And to do everything possible to avoid the need for surgery to restore the shoulder, but I was also given a fast track ticket to get surgery if it slipped again. I started physical therapy a month ago.

The “boring” bits

The story gets a bit boring now, boring is good in these situations.

The weeks pass, I get a fancy 24 hour blood pressure monitor at one point, the graphs are fascinating as they show how everything spikes from the time the home nurses may show up (oh yeah, I was given help to do my injections even while at home, I can not express how grateful I am to those wonderful people, and how above and beyond I feel like they went to make me comfortable and to make the process as smooth as possible for me), and until they leave.

The blood pressure graph explained

I’m a larger man, good blood pressure for me is 130 over, 80-85 under, or 130/85 if you prefer.

As the graph shows, I was elevated a bit while at the hospital getting it fitted on, I got home and relaxed on the couch with a movie (the first Avengers at this point), as you can see it dip down into the greens.

The spike in pulse (the pulse is a bit high at 90, but it was a stressful period of my life) at 20 and 08 were my doorbell ringing as the nurses arrived to give me my injections. The morning one is lower, as I had a lower base, and also wasn’t 100% awake that day as they came earlier than usual 😂

Fast forward a few weeks, and after 10 weeks, I am now properly home. I’ve now been through all my chemo, I am completely worn out, my parents are living with me in my tiny apartment so that I’m no left alone, one on a couch, one on the floor, me in the bed, it’s a weird situation. They had just sold their house to move into an apartment of their own that wasn’t ready quite yet so yeah…

I’m tired a lot at the time, I sleep most days, I try to get up and walk around the building at least once a day, and I have my fixed meal times still. No food has any taste any more, and I am terrified of catching even the slightest cold (I have no immune system now).

A few more weeks pass, I do followup blood tests, my immune system is returning really fast, they remark on how fast I am recovering. This is a good thing! I am still tired a lot though, small things wear me out. Going from the car into the pharmacy to pick up my medications and back leave me needing a nap.

This improves over time, but now the other late onset side effects of chemo show up.
Tinitus, that constant peep in your ears.
Neuropathy, that tingling sensation you get in your limbs when they “fall asleep”.

That’s now there near constantly, but it’s hard to describe and make people understand just what is going on. I can’t quite feel my fingers or feet properly. My balance is impacted as I’m not always sure when I’ve placed my foot on the ground, I trip a bit in stairs and such, some times harder than others. My fingers I don’t know when I’m holding down keys on my keyboard so I end up having to remove a lot of characters quite often. Cold feels burning, but heat I don’t notice much of at all (picking up ice cubes suck, trying to check if food is hot can get you burnt). The texture of certain things trigger my nerve system in strange ways, like touching paper makes me physically drop things, the “sawing” of cutting with a dinner knife makes me lose power in my hand.

I lack precision use of my right hand. I can’t currently write by hand, I tried building some Lego but I started trembling, and the trembling was the same type as when I had my seizures, so I had to stop fast. Building Lego takes time now. Training it back up and hoping it’ll work proper in the future.

Last week the numbness dissipated a bit, and was replaced with extreme itchiness along nerve paths in my arms and legs. The itching is now gone, and we’re back to the numbness, and some joint pain in my fingers. These are all expected long term effects of chemo. They say it may take up to 2 years to know if it’s permanent, but I’m keeping positive that the shifting between effects means it’s not something permanent, fingers crossed. The neuropathy increases in effect as evening comes around when the body prepares you for sleep, which means I feel everything and nothing, and it keeps me up most of the night.

One thing i do need to keep tabs on going forward: I may have a rare blood mutation which means I show tumor markers in my blood while being perfectly healthy, they are actively watching for this during each checkup I have now though. This may also have been a false positive caused by the liver ejecting them into the blood when stressed by some of my medication at one point.

I’ve left out a lot of things, I am convinced of that. I lost my hair, didn’t really bother me much. I lost my beard, bothered me a bit more, the beard went first, which sucked.

But all in all, what truly impacted me was the seizures. I described earlier on the thoughts I remember having in the moment, those are still with me, I do not feel OK thinking about them. I’ve been worried about picking up more work, as i fear added mental load would trigger new seizures. The nights before something i know is going to be hard, I have had nightmares. Before returning to work at a lower percentage, before big hospital checkups, the night before my brothers wedding. I saw my self in 3rd person in all of those scenarios, helplessly standing and watching, unable to do anything.

That got a bit too real there, I think that’s enough.

Going forward

Through it all though, I’ve had friends check i non my daily, online of course, because that is where most of the mare, spread around the world. I’ve had work check in, sending me text messages letting me know they’re thinking of me and hoping I take all the time i need to recover. I got a lovely bouquet and hand written letter from my colleagues. The bouquet was Lego flowers, they know I love my Lego ❤

As of this writing, I’m back 40% at work, hoping to ramp that up over the next month or so, as I still get tired and need to relax in between sessions, but I am extremely grateful for how work is reacting to this, and how my colleagues are keeping an eye out, as they all know I miss work, and will do too much if not kept in check.

Oh and the featured image on this post? That’s our family heritage site on my mothers side, it was my last trip there right after getting the diagnosis, and I look forward to going back soon.