(Ein wichtiger Hinweis: Ich bin medizinischer Laie. Ich habe nur lange mit meiner Krankheit gelebt. Ich kann alles medizinische hier falsch verstanden oder falsch wiedergegeben haben. Jede in diesem Text wiedergegebene Information ist potentiell aus dem Zusammenhang gerissen, falsch, unvollständig. Hört auf Euren Arzt! Fehler sind meine Fehler, nicht die meiner Ärzte.Meine Erfahrungen sind anekdotisch. Eure Erfahrungen können anders sein.)
After the first part consisted rather of general thoughts on dealing with illness and death and explained a little why I was writing the text, this part will deal more with how August of this year changed everything and destroyed plans in the process.
A letter in summer
It is the beginning of August 2025. Earth. Europe. Northern Germany. Lüneburg. My garden. Holiday. The sun is shining. I am standing near my letterbox and once again add to my mental list that I have to replace the letterbox this year. Something that would offer more resistance to a heavy downpour.
Because when I opened the box, I again noticed this little piece of paper stuck to the bottom of my mailbox. It was part of an advert. Probably for something I didn’t need, that didn’t interest me. Otherwise I wouldn’t have left it in the mailbox and given the rain the chance to soften it. Because my letterbox has not been entirely watertight for some time now and therefore had something in common with its owner.
Later, shortly before the operation, I also bought a new letterbox. My brother put it up while I was in hospital. With a nice big parcel box. Unfortunately I misjudged the overall size a little. It is very big indeed. I am fairly sure that I will therefore soon receive a request from an amateur theatre group asking whether they may rehearse at my letterbox in ape costumes. The dog will certainly be happy to donate a bone too.
Holiday
On that day, however, it was not raining. And for a holiday that was actually quite a good thing. I had a long holiday and many plans. By now I prefer one long holiday to many short holidays. I need at least a week to free my head of almost all work-related thoughts and to adjust to the holiday.
Even now – in about the tenth week of my sick leave for recovery – I sometimes sit on the sofa and ask myself: “Did you think of that too?” and “Didn’t you forget something back then?”. By now I have started reading emails again. Am already observing internal communication channels again.
So with me it takes a certain time until my head is largely free. If I have only two weeks of holiday in one go, there remains only one real holiday week, which, however, is already overshadowed at the latest on the second-to-last day of the holiday by the looming end of the holiday. So by now I prefer long holidays.
Despite the lack of rain, I was not in a particularly good mood. I was expecting a letter, the content of which I already partly knew, and suspected that the rest of the text would not really delight me either. I just had no idea exactly how the statements would be worded.
Otherwise, too, this holiday had not really gone well. I had a multitude of ideas about how I wanted to spend this holiday. Unfortunately I was unable to realise any of the plans during this holiday. Really none at all. I wanted to go to a Jean-Michel Jarre concert in Stuttgart. Didn’t work out for private reasons. But I sold the tickets almost without loss, which kept the damage within limits. I wanted to visit friends in Mannheim. Didn’t work out either. On the day I was on my way there, they were at a concert in a completely different corner of Germany. Tickets for it had materialised at short notice after all. Do one or two things on the house – that did work out. It just wasn’t particularly fun, but rather dirty. There was one more plan for the holiday. One I will write about in a little more detail shortly. None of it happened.
This whole summer was strange. As if it were winding up for something. And it did wind up. It was a pretty nasty left hook that the summer dealt me.
A warning
I would like to warn you once more. If you cannot emotionally bear a report about an illness, you should perhaps stop reading here. Back to the report.
Same procedure as every year
Okay, where was I … ah yes … it was a sunny day. I was at the letterbox. A day in the middle of my holiday. A few days earlier I had been at my annual MRI at the hospital. You are surely wondering why I have to go to the MRI again every year?
Something in my body required constant monitoring. Since CT, due to the X-ray radiation, is something to be enjoyed with caution, monitoring by means of CT was not really desirable. After all, I don’t want to have a well-observed problem but in return catch so much X-ray radiation that I get other problems. By now there are studies that suggest a connection between the mass use of computed tomography and cancer. So the only option left to me was the MRI. And that I visited once a year.
It was about the assessment of whether something in me was getting bigger or had stayed the same compared to last time. That it gets smaller is, unfortunately, completely impossible with the disease I was carrying inside me. There is no medication for it. No change of lifestyle will shrink anything. More on this examination in a later part.
In any case I was expecting the accompanying doctor’s letter, which contains the findings of the latest imaging material from my body. The consequences of the last twelve months of life. The summary of the health-related omissions of the last twelve months. Translated into the language of medicine and condensed into a number.
This letter is actually written from doctor to doctor, in the jargon peculiar to that profession. But over the years I have, unfortunately, accumulated far too much knowledge about this matter. By now I am very well able to understand what this letter wants to tell my doctor about the state of my body.
That is also a very essential piece of advice from me when dealing with any illness that does not disappear within two weeks: learn the jargon. I consider an informed patient to be essential. But for that you first have to understand the ladies and gentlemen of the medical profession.
This letter was announced to me, as every year, at the end of the MRI examination. But even without this announcement I would have expected it, because it always comes shortly after the examination. Same procedure as every year, the radiologist comes swiftly, looks down at the images on which we patients are to be seen.
As in every year since 2018. By now I can estimate quite well when this letter is written and when it lands in my letterbox. That means I know quite well when I have to look into the letterbox with somewhat suspicious eyes.
I went to the letterbox. Bill. Advert. Advert. Bill. Letter from the hospital. None of these letters was of the kind you look forward to. Letters you look forward to have become rare anyway. But this letter had simply been part of my life for a few years.
A daft plan
This letter was to have a noticeable effect on my holiday planning. In the following it is about a bike ride. Why am I telling this story in this text? To show how the illness spread into all areas of my life – even where one would not actually have suspected a connection.
It was this year’s left hook. The uppercut was to come later (see coda at the end of this series of texts). After this letter, my holiday plans were now, as already mentioned, completely thwarted. The first half of the planning had already fallen through for other reasons. Looking back, that was a stroke of luck.
What was the plan? I had had an idea for a while. For several years I had dreamed of realising it. An idea that had arisen in 2022 out of practical considerations – on account of a necessary bicycle transport – as a loose hare-brained idea for the future. It was then developed further into a ride to someone. As a kind of personal walk to Canossa. And at some point it remained just an idea for myself, to grow from the experience, from the challenge. In the process the route also underwent a significant change.
Because at some point another insight came into play in this idea. I have been in many regions of Germany: in Schleswig-Holstein, Bavaria, the Saarland, Saxony, Baden-Württemberg, Mecklenburg-Vorpommern. I don’t know how many times I have been to Berlin by now. Hamburg and Lower Saxony anyway.
In short: there is no federal state I haven’t been to. From Lower Saxony as obviously the first federal state, because I was born there, to the Saarland, which was the last to be added. For that I only had to get to almost fifty. For a long time there was simply no reason for me to go there.
In my life I have been in many cities, either privately or professionally. But at some point it struck me that I actually only knew Germany from a bird’s-eye view as well as from the perspective of the motorways and high-speed railway lines. I also know some city centres quite well. It had also struck me that I know my way around the Bay Area better than around Bavaria. In San Francisco I find my way better than in Munich. And that simply didn’t seem enough for the fifty years that I had then already lived in this country.
The plan was to change that.
Okay, that in itself is not yet a daft idea. What would have elevated this idea to the status of the daft? Had I realised the plan, I would have ridden right across Germany. Oberstdorf to Sylt. By car no stunt. The daft part? The idea was to do that by bike. (Okay, there is this idea in an even more extreme form. Some time ago I read a very interesting blog by a woman who walked this route on foot.)
Hotels were booked. Routes staked out in the relevant tools. I was in quite good training. Had prepared myself. I have indeed already ridden daily stages of this length and at the necessary frequency more than once.
The rest, on heavy inclines – talking the illness I had into consideration – was to be handled by a motor. Because since last year I own a kind of e-bike.
The e-bike was supposed to ensure that on the tour I would stay below 300 watts, even in those passages where some of Germany’s low mountain ranges had to be overcome. Unfortunately you can only dodge these inclines with a very large detour along the Rhine. And these inclines were considerably bigger than those sand heaps which here in northern Germany pass for mountains, but which are really only little hills compared to other regions of this country.
I had found a route that managed with relatively few heavy inclines. Final-boss inclines would only have been between Gemünden am Main and Fulda.
My illness simply did not allow me to ride up a mountain at 600 to 700 watts. One of my brothers can probably do that, I can’t. And with the two watts per kilogram of body weight and luggage that I allowed myself, the incline would have become very tough. So I got myself help.
With today’s knowledge I doubt that this idea would have been a good one. Whether it was good or whether it represented the stupidest idea since the Tower of Babel, I will not find out. I didn’t ride. Because as I said: everything turned out differently. Completely differently.
The third attempt
Since the idea was somewhat older, it was also not the first attempt to realise it. In early summer 2024, shortly after my fifty-first birthday, my knee stopped me on the first attempt. Patellar tip syndrome. What the hell? I actually thought cycling was gentle on the joints. For two weeks my knee did not even allow me to use the stairs from my flat downstairs properly. Going up was better. The chase after the DHL couriers was difficult during that time.
When at the same time the rivers also burst their banks and fields were flooded, I was sure that it probably would not have been a good idea to ride even after my patellar tendon had healed.
I had been to the orthopaedist because of it. Again an MRI, because nothing could be seen properly on the ultrasound. I fervently hope that it doesn’t one day come out that MRI examinations make you grow a third eye or that in old age you attract coins magnetically. Although the latter would be handy. I am just a little afraid of what happens if that also works with sewing needles.
With a little care and rest for the knee, everything came right again. That’s what you get when you are in full training but don’t warm up properly. I should have known better. I did know better. I just didn’t stick to it. My own fault.
I then had nothing better to do than to plan a second attempt. After all, I had invested quite a bit of money in preparing myself.
On the second attempt in late summer 2024 my knee was fine, but instead a signal box in southern Germany was broken. This attempt failed because of the train consequently being cancelled and the complete absence of alternatives with bicycle transport. I learned of it at two o’clock in the morning on the day of departure, which should have taken place around eight o’clock.
And it was actually excellently planned: there is (or rather: was) a train that starts in Hamburg, stops in Lüneburg and ends in Oberstdorf. Practically tailor-made for my purposes.
Here we are again with the consequences of my illness. This illness really penetrates into every area. Because with the said train I would have had to heave the bike into the train only once and out of the train only once. Which, given a total weight of the load of about 35 kilograms – fully packed – would have been a significant relief.
35 kilograms was a weight that with my illness I was no longer allowed to lift just like that. I can lift it, that’s not the problem. I was simply no longer allowed to lift it. Instruction from the doctor. Because it might possibly lead to problems that would be extremely unpleasant.
Not being allowed to lift 35 kilograms meant that I was not allowed to load the bike into the train in toto. Probably that wouldn’t have worked anyway because of the width of the load, but then I would at least only have had to take off the two rear bags. With regard to the weight, I would have had to take the luggage off the bicycle twice and put it back on twice at every change of train. Luggage here meant: two front bags and three rear bags. Take off before getting off, put on after getting off, roll to the new train, take off before getting on, put on after getting on.
When you then have to change in, for example, Hanover, Cologne, Stuttgart and Ulm, you want to throw the bike into the river at the latest at the Neckar.
That is precisely the reason why these trains like to build up delays during holiday periods: because some cyclist needs too much time for the change. To avoid that, I booked this direct train. On the day of arrival I would then have ridden from Oberstdorf to Immenstadt by bike – with a detour via the southernmost building in Germany. So went the plan, which then came to nothing.
In 2024 I nevertheless rode long distances. Just not one big, continuous route. Instead I rode three smaller tours: Lüneburg–Staberhuk–Neustadt, Emden–Oldenburg–Brake–Bremen–Lüneburg and Berlin–Havelberg–Lüneburg. Basically that was one ride per week during my holiday.
The three rides comprised in the end roughly as many kilometres as the planned Germany tour. Give or take. About 1,000 kilometres. There were just considerably fewer metres of altitude than planned.
And these routes were beautiful. Lüneburg–Staberhuk was a tour to my place of longing, Emden–Lüneburg a journey through my past, and Berlin–Lüneburg was something I had always wanted to try out. They were more than a full replacement.
I am a little proud of these bike rides. Even if I don’t know to what extent the strains of 2024 were responsible for the events of 2025. The measured values don’t really suggest it, but the uncertainty remains. The strange thing about my illness was that you can do all of that and nevertheless be left with the thought: was that a good idea?
You carry something into the house for your parents that is a little heavier. Was that a good idea? You lift a child onto a wall. Was that a good idea? You carry a somewhat heavier rucksack because there are valuables in it and you don’t want to leave it in the car. Was that a good idea? You help the pellet delivery man with his pallet truck to push the pallet into the garage, in order to speed up the delivery. Was that a good idea? You ride from Lüneburg to Staberhuk. Was that a good idea?
I wrote of the ever-present fear. This question – “Was that a good idea?” – is one of the drops that hollow out the stone. Because you constantly ask yourself whether you will have to pay for it at the next MRI when – as I already wrote – the radiologist names the number of the day as the consequence of the last twelve months of life.
I did not see the problem so much in the ride itself. Otherwise I wouldn’t have attempted the idea in the first place. But in the surrounding stuff. Hauling bicycles into trains, for example.
Third attempt
The third attempt would have been this year. But that didn’t work out either. It was abruptly stopped by an upset stomach (details I will spare you) even before the start. The day came on which I actually wanted to set off – but I couldn’t set off. I was sitting on something else.
Bloody hell …
I had divided the tour in two anyway: first from Oberstdorf to Lüneburg. Then a few days’ break because of my mother’s birthday and my MRI appointment in 2025. And then on from Lüneburg to Sylt.
Yes, okay, and in between do the laundry and sort out my bones. Sleep in my own bed. So, strictly speaking, two bike rides that on Strava would have looked like a single one.
I had prepared and packed the bicycle. But then came the aforementioned digestive problem. Unexpected. Severe. Unexpectedly severe.
In hindsight my karma probably wanted to tell me: “Bloody hell, you idiot, get it at last. Just leave it. The time is not right. And the idea is a hare-brained one. It was born as a hare-brained idea, it is a hare-brained idea now too and will remain so for the time being. Get it.”
Residual route
When I spent the start of my tour on the toilet, I still did not want to give up the tour completely. I planned to shorten it a little. Well, to cut away about two thirds. It would still have been a considerable distance.
I always have a little the impression that especially people from southern Germany underestimate how much Germany there actually still is north of Hamburg. The stretch up to Flensburg is somehow coast.
Or indeed Sylt. Those are quite a few kilometres that feel even longer, because there is no motorway as far as Klanxbüll and the A23 ends somewhere in the Schleswig-Holstein middle of nowhere. Klanxbüll would be that place where you have to change to the train to Sylt anyway.
It is also interesting for how many people Hamburg lies, in their minds, close to the North Sea. Okay, that Hamburg does not lie on the North Sea is clear to many. How long the route actually is to get from the Landungsbrücken to the North Sea, on the other hand, less so. The harbour passage from the Elbe estuary to the berth in Hamburg already takes several hours.
The idea was now to ride only the second half in August: from Lüneburg to Sylt. Precisely the proper chunk of Germany that comes after Hamburg. After the birthday. After the MRI.
My hope was that the MRI would come out as “everything stable” and that I could thus get into the saddle reassured. And then the letter came. And it ended this plan too. Finally – at least for this year. And at that point in time it was quite possibly also the case that it would prevent the plan forever.
Since then, with the knowledge from the MRI follow-up check of 1 August 2025, I ask myself whether this ride would have turned me from an elective patient for the operation that was certainly in my future at that point into an emergency. Or, put simply, whether I would have killed myself with this stunt. I don’t know. Honestly, I don’t think it would have turned out that way, but it certainly would not have been clever to tackle this route with the measured values that came out at the MRI.
In future
I don’t yet know whether I will ever dig out this idea again. At the moment I am unsure about that. Maybe it is something for 2027. When I know how everything develops. Whether in 2027 it feels sufficiently good. I got through the operation to remove the problem well enough that there is at least a chance for it.
Should I decide to do it, the journey by train directly from Lüneburg to Oberstdorf is, by the way, no longer possible. The railway has taken this train out of the programme for the 2026 timetable. De facto it has not run since October. And I find that lamentable.
Defiance
It only became clear to me while writing this text that there was probably yet another reason for planning this journey. It was merely the last in a series of decisions all attributable to the same stubbornness: I did not want to let myself be defined by my illness.
I do not necessarily react to fear with withdrawal. But often also by standing up to it. To this day I have a fear of flying. A insignificant fear of flying. Or let’s not call it fear of flying, but a considerable distrust of the concept of “metal tube that flies”. Nevertheless, since I overcame this fear of flying, I have often got on a plane. I believe over 500 times.
It was, in a way, also a defiant reaction to the fact that this fear of flying defined me. That I could no longer get to the places I would like to visit, because sensibly the necessity of flying stood in the way. I know other people who have wanderlust but could not overcome their fear of flying. Who would very much like to fly into the distance but cannot. Who therefore develop frustration with themselves. At this point this restriction begins to define parts of a person.
That is precisely what I did not want.
The situation with the fear of flying repeated itself, as it were, with this diagnosis. The intensive cycling of the last years was an expression of this determination not to let myself be defined by it. In a way, though, it was also a defiant reaction to the illness.
I believe even my doctors were not always in agreement about whether the cycling was a good idea. On the one hand: weight reduction, healthy lifestyle, low blood pressure – all very good. On the other hand, though, also partly quite extreme exertions, which in turn was not good. Although these were exclusively endurance loads, no strength exertions, which would certainly have been problematic with regard to my diagnosis. I nevertheless always had the impression that my doctors found that a little suspect.
It was defiance of the restriction. Defiance of having to hold back. Defiance of living with the handbrake on. Because my illness meant restriction, holding back and a handbrake at many points in life, as I will explain further in the text.
In the end the illness changed me, and these changes cost me quite a bit. Despite the defiance. Or perhaps precisely because of the defiance. Because defiance costs energy. It is the way against the current that reason dictates to you. Against the wind of all the advice. And swimming against the current is not the most efficient way of getting around.
In the next part it will be about my experiences with imaging magnets – and about how life-changing letters can in the end turn out to be the impetus for positive developments after all.
