Category Archives: A bump in the road Summer 2022

Just one more thing: AIACE

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Somewhere along the way when my stress-levels were at their highest, my brain-fog the thickest and I felt completely stuck between hospital and sickness insurance, I wrote to AIACE-DE (the German branch of our “union”, or “pensioners club” AIACE-EUROPA which represents former EU staff). I am a member of the German branch (for now).

As is so typical in Germany with the reluctance to put anything in writing, the same thing that almost always happens when you send an e-mail – somebody tried to call me. I obviously was not in any fit state to talk to anybody, neither on the phone nor in person, so I waited for the e-mail reply which never came. I don’t know why it is not accepted in Germany that when you send a question by e-mail, it is because you need the response by e-mail.

I was then put in touch with a person (not sure if they would want their name publicised here) in the Danish branch of AIACE, and they were incredibly helpful. I received all the information I had been looking for, IN WRITING so that I could study it whenever I felt able to.

I am thinking of trying to become a member of the Danish branch, since it is so much more useful. I may or may not remain a member of the German branch since I am not convinced of its usefulness. I would miss out on the social events, but they are in any case very boring, just like I am sure they are in all other national branches of AIACE.

A new lease of life

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The last few days, I have been a little overwhelmed by the events of the last couple of months. It all seemed to suddenly hit me like a sledge-hammer, but now I am ready to complete the last post for this category.

I have been surprised at how quickly I got to feel almost back to normal – physically. I have just a few mobility issues, but my strength needs working on as soon as I am allowed to. I do get tired more easily and often need a nap during the day if I want to not have to go to bed too ridiculously early in the evening. I do feel a lot less tired as in late winter and spring, as already touched upon in a previous post, and would urge everybody to pay attention to their general well-being, and not ignore persistent feelings of fatigue, no matter how diffuse.

My follow-up consultation with the surgeon (or one of them) was brought forward to 5 August. The final results were in, it was still good news, and the surgeon wanted to let me know as soon as possible.

No chemo (which would have been very unexpected and which I would not have done anyway), and also no radiation (which I had psyched myself up for, and would probably have done, but I am very happy not to have to make the decision).

BUT they are recommending hormone inhibitors for five years in an attempt to avoid recurrence, so that is a major decision to have to make. It has never taken much for me to feel that life was not worth living, and I have many “better-to-be-dead-then” scenarios. Chemotherapy is one of them, and the side effects of hormone inhibitors another. I have an appointment with my gynecologist to discuss this next week.

What I will do is lead as anti-inflammatory, and thus anti-cancer, a lifestyle as I possibly can (even if it means dropping red wine altogether 😊). With the growing awareness that diet and exercise can play a big role in trying to stave off cancer, that will be my project now that I have to decide what to do with my life in an age of pandemics, with – for now – no cancer, and – forever – no dog ☹.

I am considering consulting a naturopath, for example this one. I am also continuing the mindfulness meditation routine I started prior to surgery, and I have dusted off my infrared lamp and have started using it for scar treatment and general well-being.

Before surgery, I sold all my very heavy Canon and Sigma gear and bought a much lighter Fujifilm camera and – so far – two lenses. However, I am still waiting for the urge to take photos to reappear. If and when it does, the results will appear in future posts.

Random thoughts while I wait for the first check-up and final pathological results and the verdict: further treatment needed or not

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I could not have felt in better hands than in Brustzentrum Vivantes am Urban. I felt surrounded by top-notch competence as well as kindness all the way through. The atmosphere there is relaxed and pleasant. (I can remember a time when the head doctor did his rounds followed by an entourage who clicked their heels and made notes of his – it was almost always a he – words of wisdom. There is none of that kind of bullshit any more, at least not in that clinic).

So far, I have none of the problems many others seem to have (swollen arms, etc. etc. etc.) and although I am not allowed to lift my arms all the way up over my head yet, I think I could if I wanted to. I am quite sure staying in hospital for at least two nights after surgery (in my case four nights), and the care you are given during that time, has a lot to do with avoiding post-op complications. In some countries, women are sent home on the day of surgery (I am guessing insurance issue). Quite frankly I don’t see how that is even possible. It is major surgery, after all, and personally, I felt very weak and dizzy the first 24 hours. I am so thankful that I was allowed to stay four nights, but I would say that two nights should be the minimum.

Don’t get me started about the food – I think that is the same everywhere and a whole other issue, and I eat everything anybody serves me, but geared towards healing and regaining strength it is not.

But now I am back home, stuffing myself with salads, vegetables, pulses, and a little bit of meat or fish, berry smoothies, and one piece of fruit per day. I walked home from the hospital with a friend of mine schlepping my suitcase. We stopped for a coffee on the way, to celebrate that both my drains had been removed. The rest of that day I tried to keep still although I did not feel tired, and did not have much pain. Yes, I can feel that something is going on in the scars, probably trying to heal, but pain as such – not really, more like a burning feeling. At the hospital, if and when I took any of the painkillers they offered me, it was more in order to be able to sleep despite the discomfort in neck and shoulders from being so inactive.

While in hospital, I had a visit from a psychologist. She seemed mildly surprised by my general attitude – that a double mastectomy is not the end of the world, that it may have saved, or at least prolonged my life, and I would rather lose a pair of sad, nearly 70-year-old boobs than an arm or a leg. Once that had been cleared up, we had a very nice chat about this, that and the other. Although I did discover one thing: I still can’t talk about Max (my ex-dog) without crying. Perhaps I am channelling all my trauma, sadness and post-op melancholy out through that one aspect. I don’t know – the psychologist said I was welcome to contact her again should I feel the need, so if the inability to even think about Max without crying continues, perhaps I will.

I was also given a prescription for prosthesis – something most staff at the hospital seemed to take for granted that everybody wants (those who do not opt for reconstruction). I am still undecided whether I do. It sounds so impractical and bothersome to me, but there is a chain of those ergonomic shops which has a branch that specialises only in all kinds of breast … whatever … bras, inlays, … I don’t know what it is called, and I will certainly go along to see what the options are. My feeling is that I will prefer a life without bra straps, and in fact, on yesterday’s walk the weather was so lovely that I hugely enjoyed parading an off-shoulder, “look-no-straps”, blouse I bought just before surgery 😊. I think I shall just keep looking for clothes that camouflage the flatness a little bit. Or not. Part of me also wants to contribute towards breast cancer awareness raising, not to mention demystifying mastectomies, and that is not done by conveying the signal that we need fake boobs  to feel like real women.

I don’t want to turn myself and everybody else into chronic hypochondriacs but I can’t help thinking that perhaps we should pay more attention to our general well-being. I think I should have known that something was wrong somewhere in my body. Not that I had any pain anywhere, but I used to wake up with a kind of heaviness and demotivation, performed more and more “overspringshandlinger” – I can’t find the right words for that in neither English nor German but used the mañana-mañana delusion a lot, (like – “I’ll do better tomorrow”) especially when it came to exercising my dog properly, for example. Also, I needed a nap almost every day, and went to bed earlier and earlier in the evening. On the rare occasions that I really thought about it, I put it down to “spring fatigue”, and to getting old.

It is the kind of thing that sneaks up on you so slowly and gradually that you do not really notice it until it is gone again. So it is purely on hindsight and comparing that to how I feel now that I can see that I should have known. Now, I wake up with a feeling of lightness and motivation to get out of bed that I have not felt since late spring or thereabouts. My surgery was a week ago tomorrow, and apart from the first 48 hours or so where I slept A LOT – basically whenever I was not eating … – I have not needed to sleep during the day – not even yesterday after walking ten-thousand-and-something steps 😊.

This morning, I plucked up the courage to remove the bandage and compresses and look at my scars. They are still covered in sort of transparent strips of plaster, my entire upper body looks badly bruised, and there is a tiny bit of swelling here and there, so it is impossible to predict the end result, but from what I can see now, it looks as good as that kind of scarring will ever look. And above all quite symmetrical, which for some reason is important to me. I have seen some horrid photos on the web that makes one wonder what on earth the surgeon was thinking. Some scars are a complete mess, looking as if no effort whatsoever was made to make them look remotely neat or straight and definitely far from symmetrical. So far, I am contant with mine.

Random thoughts POST-OP

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The day and night before the day of the surgery, it took a fair amount of deep, slow breaths in order to not freak out slightly, but when the time came, after the trials and tribulations since diagnosis, I was actually relieved to meditate myself far away and be knocked out cold by the anaesthetic.

The day before, I had been booked in, prepped, undergone the usual tests and interviews, and had everything explained to me in more detail than I actually cared to know.

Since then, I have been getting better and better. They take such good care of their patients here, especially the first 24 hours after surgery with very regular checks of blood pressure, temperature, drains and compresses all through the night. They also came round a couple of times to take me walking a few steps since I was still very dizzy. How women in some countries are sent home on the same day is beyond me, and most of them are even happy to. Perhaps that says more about the hospital than about the women ….. In the same fora I read about horrible post-op complications and I can’t help thinking there might be a correlation between the care and vigilance during the first couple of days and the rate of complications.

The first thing I checked after I woke up after surgery was the number of drains I had: Two. This was positive, since I had read that if during surgery they had needed to remove more than the closest lymph node, I would have another one or two drains. Shortly after I was back in the room, one of the surgeons (of which there were two, working in parallel, one boob each) came round to say everything had gone really well, no unpleasant surprises, and the main lymph nodes were clear. There is one test remaining which takes a bit longer to perform, but in my case that seems to be a routine formality. This morning the other surgeon came round with the same message.

I expect to go home on Monday, with a bit of luck sans drains, and – if things turn out the way they seem to be expecting, also sans cancer and – miracle of miracles – sans need for radiation. If that turns out to be true, I have been really lucky.

Further random thoughts while waiting for surgery (administrative admittance and preliminary examinations 27 July and surgery 28 July)

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I miss Max. Although he was only with me for a year, he is such a character, and has left a huge void. Funnily enough, what I miss most is what I had “feared” the most when adopting him – the early-morning rounds. Although I have always been an early riser, I thought I would have to stay as immobile as possible and have coffee first thing in order to be able to start functioning, but with Max, I really enjoyed getting out – first thing – somewhere between 5.00 and 6.00, when the air is still (relatively) fresh, and not many people in the streets. When it was light enough, we sometimes went as far as Tiergarten and had a look at the many wild rabbits frolicking there at that time of day. Coming back home, the coffee tasted even better ……

Since diagnosis, I have not had neither the strength nor the discipline for that, but I am hoping to take that habit up again, even without Max, as soon as I can. I have no idea when that will be. For now, I go for shorter walks and do one or two of Gabi Fastner’s videos (linked to in several previous posts) in order to stay in some kind of shape.

Depending who you ask, it will take from a couple of weeks to several months or even years before I feel back to normal again after surgery, or at least normal enough to go on walks of any considerable length, and that is assuming I will not need any further treatments, which is what several people who know about these things seem to think. I am keeping my fingers crossed while trying to stay open to the fact that I may need radiation. If chemo comes into the picture, I am still undecided whether I would do that, but I don’t think so. That is like being in Hell, and then you die anyway.

A post-op stay in some kind of recreational facility has been suggested to me. My insurance would cover it, and I would love to get away from Berlin for a little while. If I can find a place that focuses on physiotherapy and gymnastic exercises, and even massage although I hate that, I would definitely consider it. Also healthy nutrition, which I am assuming would mean that it would be more likely to be in Poland than in Germany, but I will hear what they say at the hospital after surgery.

The sooner I can get back in shape, the sooner will I be able to visit Max in his new home and go for a walk with him and his new owner. There is nothing better than walking in the forest with a dog.

Some people are wondering why I am so adamant about a double mastectomy without reconstruction. I could have chosen a single mastectomy and perhaps reconstruction, and double lumpectomy in the other breast. I wonder what kind of mess that would look like, plus, the risk of recurrence in the remaining breast is very high. The second choice would be double mastectomy with reconstruction.

To those wondering about my decision – “going flat” as we say in our circles, all I can say is – well – google it, and check out some Facebook groups. To me, that decision very quickly became a total no-brainer. The further risk of complications and more surgeries, and the fact that “implant syndrome” is a thing – no thanks. And not only that, but I seem to remember a study a couple of years ago revealing a new form of lymphoma associated with breast implants. No thanks.

To me, a double – flat – mastectomy is not the end of the world, but I can certainly understand how it must be devastating news to many much younger women.

What really throws me is realising how many young women receive this diagnosis, and how many different types of breast cancer there are, and the number of variables within each type.

Young women with small children who go through years and years of chemo, lumpectomies, and radiations, and starting over again, knowing that their prognosis is not good, but with a young family it is important to stay alive as long as possible.

Particularly heartbreaking are the women who are diagnosed during pregnancy, who have to have the birth induced in week 36 in order to be able to start chemo as soon as possible. A newborn, perhaps a toddler at home, and chemo. Unfathomable. I have been looking for charities/organisations that focus on supporting women in those kinds of situations but strangely enough not been able to find any. Cancer is never part of anybody’s master plan, least of all when you are young and just starting a family, and coping with a serious cancer diagnosis must seem insurmountable at times.

Self-pity is an ugly sentiment, but this is hard. Plus, it seems an explanation is due as to why I decided to re-home Max

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I just had a couple of really dark days – about 48 hours where I could not stop crying, and then about 24 hours where I could not stop sleeping :-).

I guess it was not until my brother and-sister-in-law went back to Copenhagen that I really had time to reflect on the events since diagnosis on 16 June, and a reaction should not have come as a surprise.

The instant feeling of dread and panic when I heard the diagnosis – what was going to happen to Max. The hectic time activating all networks, and their networks trying to find a good home for an eight-year-old rescue dog, in a city already flooded with dogs for adoption, and now also from Ukraine, and the immense sadness at the thought of parting with him. The research – lumpectomy or bilateral mastectomy? The meeting with the surgeon to confirm: bilateral mastectomy. The bureaucracy of first waiting far too long for the cost estimate from the hospital, the misinformation from the sickness insurance as to what I needed to do (wasting several days trying to get that done – for nothing), the nightmarish day at the hospital where in the end surgery had to be postponed. The even worse nightmare of, for a couple of days thinking the shelter was the only solution for Max (even the shelter had to be persuaded after they told me they were completely full), until at the last minute, with the help of my neighbour-dogwalker Frank and Sabine, we found him a great new home. And one of the worst moments of my entire life: seeing him off to that new home in Köpenick (Frank and Sabine kindly took him in their car) (but which was of course a thousand times better than taking him to the shelter).

It all hit me a couple of days ago.

Many people do not understand why I decided that I would no longer be able to take care of Max. As if a cancer diagnosis and the uncertain future that comes with it were not reason enough. (Don’t even get me started about the response from the so-called adoption agency, House of Bitches – pure narcissistic evil, which also should not have come as a surprise since they had been monumentally unprofessional from day one).

Max is very strong, and still a bit anxious and reactive in certain situations. I can just about handle him with the upper-body strength I have now – strength that I will lose after this type of surgery, and – since I am not getting any younger – can’t be certain that I will ever regain. In fact, even hoping that I will not need debilitating treatments post-surgery, it is more likely that I will not be able to completely regain that strength, and that it will become irresponsible of me to take Max out in the streets around here. And Max is the kind of dog who needs a lot of exercise.

And all that, by the way, is also the reason why I did not “just get someone in to walk him occasionally”, as many have suggested. I don’t know how they imagine getting an experienced dog-walker in to walk a dog at least three times a day, seven days a week would be doable. The dog-walker I originally had once a day twice a week was a great arrangement, and luckily, since it was holiday time, he was able to include Max up to six times a week since my diagnosis, but that still leaves at least two shorter rounds every day. But as always, it is people who have never had dogs who are the experts and full of totally unrealistic advice.

I did have in mind to place Max in a dog pension until I knew more about what the future holds in terms of my health (chemo? radiation), but since this is holiday time, they were all full – or at least the ones in any kind of vicinity of Berlin. I was too exhausted to contemplate travelling with him to the other end of the country, even if I had been able to find him a place.

Even though I miss him very much, I do feel good about the solution we found, and would once again like to say that without my neighbours/dogwalker/dog trainer couple, I simply would not have been able to pull off this solution, and I am forever grateful for their help at one of the lowest points in my life. And the instant feeling of dread and panic I felt while wondering what would happen to him is something I never want to feel again. If I ever mention the possibilitiy of acquiring another pet – someone please shoot me.

In the coming week, I will concentrate on bringing my spirits up, eating as healthily as possible, go to a few exhibitions hopefully not too well visited and which I can reach without using public transport, staying away from people (I REALLY do not want to catch Corona right now ….), and keeping my fingers crossed that things will fall into place with the payment.

It is still, after a week, a “he-said-she-said” situation with the sickness insurance saying they have paid the bill, and that I am NOT to pay it myself, and the hospital saying they have not received the payment and suggesting that I pay the bill myself. Getting rather sick and tired of the whole thing and dreading any future similar situations.

Surgery postponed till 27 July

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Caught between two bureaucracies that cannot or will not acknowledge each others’ existence

FIRST VERSION 11 JULY, UPDATED FOR CLARITY 12 JULY – A GERMAN VERSION IS IN PREPARATION

This is largely for my own records, but also to have something to refer to if people ask what on earth happened, when, upon arrival at Admissions at Vivantes Klinikum am Urban at 7 am on 11 July, for pre-surgery tests and examinations, with surgery scheduled the following day, I was asked to pay the bill before anything else could be set in motion.

After final diagnosis on 16 June, and as soon as I had seen the surgeon at Vivantes and we had agreed on the double mastectomy, I was informed by my sickness insurance that I must apply for direct billing, and to that end, I would need to submit a cost estimate. I immediately asked the hospital for this estimate. To actually receive it from them took more than a week, and many e-mails.

When I finally received the cost estimate, I submitted it and applied for direct billing on the same day. It took several e-mails to several different people to make sure that somebody was actually there to see what was pinging in at the JSIS/RCAM, or whatever it is called, end. In the process of submitting documents there were several “internal error” messages which one could only hope someone would fix, and when that happened, eventually, what had previously been entered had disappeared, and I had to start over. Several days were wasted that way.

Eventually, I was informed that they had approved the direct billing application and sent the approval directly to the hospital. What they DID NOT tell me, nor the hospital, was that they had no intention of complying with the hospital’s request to pay the entire amount in advance only based on the cost estimate. I can kind of understand that to them, a cost estimate does not constitute an invoice, but they should have told me that things were not working out the way I thought since I naively thought no news was good news. When in fact, as it turned out, that direct billing thing is a curse rather than a cure.

In the approval sent directly to the hospital, accepting direct billing and confirming that they would pay the estimated amount, they give the exact address to which the invoice should be sent. What the hospital DID NOT tell me was that they had no intention of sending an invoice, since they were unable to mail it to an insurance company outside of Germany. Or at least they did not tell me that till the day of the supposed admission (i.e. the day before surgery). I will never live to understand why they would not send the invoice outside of Germany even if they do look at JSIS/RCAM as a Mickey Mouse “insurance company”.

I, and lot of other people at the hospital, including the surgeon, wasted an entire morning, in my case six hours to be precise (which I could have spent with my brother and sister-in-law visiting from Denmark, had I known that it was all for nothing), trying to get this sorted, with me squeezed between sickness insurance staff and hospital administration, armed with laptop and phone. On several occasions, people on the sickness insurance side told me they had already spoken to the hospital and things were being worked out and I was under no circumstance to pay the bill myself; and the hospital saying nobody had called them, and they were unable to set things (in this case formal admission and pre-surgery tests and examinations) in motion before the bill had been paid. It was farcical.

And then it became too late to start doing the tests and examinations and I left with a new appointment (technical admission 27 July and surgery 28 July). However, currently, the situation seems deadlocked and I have no idea whether things will have fallen into place by then.

It is a good thing I have one of the slowest-growing and least aggressive and invasive forms of breast cancer, according to two different medical professionals at the hospital.

When two bureaucracies are so far from each other, why do they have anything to do with each other at all? Why am I forced to pay towards a sickness fund which clearly does not work in the country in which I live? Is Germany no longer member of the EU? What did I miss?

Why did nobody at the hospital emphasise to me that they needed payment in advance. This is mentioned on page two of the cost estimate which I did not think I needed to read extensively but just forward to the sickness insurance as soon as possible.

Why did nobody in the sickness insurance (and I have been in touch with a lot of people there lately) tell me that it would be best if I paid the bill myself, for subsequent reimbursement, and that the direct billing procedure would NOT work in the case of a hospital in Germany?

And finally, and I don’t mean to whine, but the last month or so has been stressfull to say the least. I now know what people mean when they say a cancer diagnosis and the uncertain future that comes with it causes chaos in one’s head. For me, not least because I had to find another – good – home for my dog (in a city already flooded with dogs for adoption), while (trying to) prepare for major surgery, and whatever treatments may be needed afterwards. It has been hard, and sad, and caused panic and anxiety attacks, “brain fog”, and sleepless nights. There must be so many people in similar situations. I think people deserve things to be running a bit more smoothly than this.

Hopefully the last update for a while: a great home for Max found

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With the invaluable help from my neighbour/dogwalker/dog trainer, we have found a new home for Max, and it is even in a much more suburban and quiet area than this one, and in a house with a garden. Max’s foster parents from before I adopted him also have a big hand in making this happen.

Immense relief knowing that Max will be in good and loving hands now added to the immense sadness of the last few weeks. Not to mention the stress.

Added bonus, Max’s new owner would like to stay in touch, and would like me to visit for coffee and a walk in the forest, and – always depending on my health, of course – I have offered to house- and dogsit if she ever has to be away for any length of time.

Also, after a couple of weeks of nailbiting trials and tribulations, one of two important approvals from my sickness insurance company has come through, and the other one is alledgedly in the pipeline. In that context, I guess one of the “problems” was that the waiting lists in Berlin for this kind of surgery are relatively short, which is incompatible with the heavy bureaucracy of the sickness insurance for current and former EU employees. Had I lived in Denmark, I would probably have had to wait for the surgery for months rather than weeks, and therefore had plenty of time to get the paperwork done.

Head- and stomach aches, as well as brain fog, suddenly lifting, and I already have a bit more both mental and physical energy. I can now start to look forward to the arrival of my brother and sister-in-law, whom I have not seen for three years, and relax with them until surgery on 12 July. This will also mean that my home will feel less empty with them here, even after Max moves to his new home some time this coming weekend.

Update on Max the Schmuselhund

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My wonderful neighbour/dogwalker/dogtrainer are helping me with Max now since it was all getting too much.

A lot of stress, also with my insurance company dragging their feet, gave me brain fog, stomach aches, and sleepless nights. Not mention printer/scanner kaputt, and new printer not working either.

Anyway, Frank and Sabine hated the idea of the shelter as much as I did, so they have assured me that that is out of the question and they also interviewed a potential new owner for Max, and took him to see her and spend a trial sleepover and picked him up again. I already don’t know what I would have done without them. We are now waiting to hear the final decision of this potential new owner. I am keeping my fingers crossed since we all like her very much and her surroundings would be so much better for Max than mine. Should this fail, we do have a relatively long-term, but temporary, though very good, solution to fall back on.

However, while waiting for this decision, the search is still on, and anyone interested in further information about Max can check out previous posts, and/or send me a message and I will send them the Steckbrief about Max which Sabine and Frank wrote.

If they are still interested, they should contact Frank and Sabine on this e-mail address.

Condemnation all around …

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… because I now have to consider the last two options for Max (shelter, and if that does not work out, then euthanasia).

I and many others have spent weeks exploring all options to make sure it does not come to that.

I don’t wish bad things on (most) other people, but I really think all those who are so judgemental should try, for just one day – not weeks – to know what the chaos of receiving a cancer diagnosis, worrying about what is going to happen to one’s dog, and facing major surgery on a date coming ever closer, and an uncertain future after that.

Just one day, and feel the sense of desperation, dread and anxiety it causes, and how it makes it impossible to focus on anything else. Not to mention the immense sadness which has to be put to one side and dealt with later.