Tag Archives: Vivantes

A bump in the road Summer 2022

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.

A bump in the road Summer 2022

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.