The flat Fujifilm fumbler

Some photos from the first time I took Mr Fuji out for a walk

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Still hoping to rekindle my interest in photography, I took a walk to the cemeteries in Bergmannstraße and, incidentally, to a market at Marheinekeplatz, back in mid-August. The fact that I only bothered to look at the photos on my laptop weeks later says a lot about my lack of passion …….). (By the way: recommended pitstop: Café Strauß, in a disused building belonging to the cemeteries).

Anyway, although I can’t claim to be back in photography mode, I can say that I am definitely better able to take sharp(ish) and more detailed photos with Fujifilm than with Canon.

The flat Fujifilm fumbler

Thoughts on the way forward, lifestyle, hormone inhibitors …

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Let me just emphasise this again, as touched upon in a previous post: Do not ignore a sustained period of inexplicable fatigue, no matter how diffuse. Cancer tumours will put your immune system into working overtime, so even if feeling tired daily is your only symptom, if it lasts more than a couple of weeks, and you have no other explanation for it, start the detective work together with your GP. Fatigue in itself is not mentioned anywhere when you search for symptoms of breast cancer, but in my case, it was the first, and for a long time the only one, and I was just lucky that the invitation to the public mammography screening came when it came.

So where do I go from here. Recurrence seems to be a – recurrent – theme after having had one of the hormone-positive types of cancer. At my follow-up consultation with one of the surgeons a week after surgery, it was recommended that I take hormone inhibitors. I had already read about those, mostly on Facebook, and did and do not like the sound of the side effects. When I asked what would happen if I did not take them, the surgeon just repeated that they recommend them, and added that I should discuss this with my gynecologist.

The following is my own take on what I have gleaned from having done some more research and after my first post-op consultation with my gynecologist. I am not trying to tell others what to do – it is simply this – a step in my own process of decision-making.

Not everyone experiences side effects, and many only have one side effect: arthritis in the fingers and hands. However, other side effects can be quite crippling, and also include things like mood swings and weight gain. Issues which a lot of us can manage to experience very well even without taking those pills, thank you very much.

With the types of tumours I had, together with my age, the indications for taking them are fewer than for many others, and the statistics are in any case not clear. There are no guarantees. One can get another type of cancer, not hormone receptive, or one can get run over by a bus. And it is not as if science can state for certain that if I get cancer in five or ten years, it will be because I did not take those pills, and vice-versa – if I am still cancer free in five or ten years, it is because I did take them. Unfortunately, the statistics are not – yet – that specific.

I am coming to the solution that I will take a very small dose, and if the side effects become unlivable with, I stop. It is important to note that most of the most common side effects go away again after stopping.

There is growing awareness that diet and exercise play a significant role in prevention, and again – it is all about strengthening your immune system. Of course, just like with the above mentioned statistics, it is not the case that one can definitely say that if you are still cancer free five to ten years after surgery, it is because you dropped red meat and sugar, nor vice-versa – noone can say with certainty that if you eat red meat and sugar, you will get cancer (although research is actually starting to point in that direction, and especially in the case of sugar which is like fertiliser for cancer).

For now, I eat salad, salad, and salad 😊(there is enough information online on how to eat an immune-boosting, anti-inflammatory diet – I am not at this point going to go into details). I am also moving towards intermittent fasting, since another persistent piece of advice is to stay slim, in fact ultra-slim, and try to not have any excess fat on one’s body at all 😊- for now, not so easy for me since I like food, and am still a bit limited in the exercise department (now that I am no longer wearing compresses, my scars start to hurt long before I have done my 10.000 (let alone 20.000 which I would prefer) steps per day. I could wear compresses on long walks, you say? Certainly, and I will, as soon as the temperatures drop from the current over 30 C each day. I listen to at least one guided meditation each day. I try to do floor exercises (Gabi Fastner style) as much as I can, but that should really rather wait another four to six weeks.

And finally, although not directly related to a diet/exercise regime) I listen to at least one guided meditation each day, and on days where I remember it, I use infrared light on my torso/scars. Both of which I find contribute greatly to a general feeling of well-being, althoug in the case of the infrared light, the jury is till out whether it has a positive effect on scars.

After the summer, when I will no longer feel like eating salad for all meals, I will start looking into (mostly but not exclusively) vegetarian and vegan recipes that comply with the nutritional guidelines for immune-boosting and anti-inflammatory food, and do some real cooking, and also see how I can incorporate rare but regular, and to me quality-of-life-enhancing treats, which in my case are things like a glass of wine, a bit of cheese, ….. (My desire for sweet things, which was never great but I have been known to enjoy the odd cake when having coffee in a café, or a dessert, especially if it was one that I had never tried before) has practically gone now that I know just to what extent cancer loves sugar.

The flat Fujifilm fumbler

Having “gone flat” ….

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…. as we say in our circles, does have its advantages – no need for bra straps unless you want prostheses. Although when looking around, one does get the impression that visible bra straps are not the complete no-no that they were when I was young :-). In fact, one can easily get the impression, that showing one’s bra straps is a mandatory fashion statement.

As touched upon in a previous post, I am not sure to what extent I want to camouflage my flatness. I guess it will often depend on my mood and what I want to wear. For now, my priority is on comfort and what feels easy on the skin and the still tender scars, and that definitely excludes any kind of padding, let alone prosthesis. There are still tips to follow, such as pleats and folds, as in the photo above, and big print and breast pockets, as in the below photo which happens to have both.

The flat Fujifilm fumbler

By the way, beware of this internet provider ….

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…. with the absurd name of PŸUR.

Their sales reps are – although all smiles – extremely aggressive. They will turn up unannounced, which in itself is not normal, and bulldoze their way into your home pretending that a change of provider has been collectively decided by everybody in your building so that you do not have a choice.

The flat Fujifilm fumbler

And so life goes on …

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…….. trying to balance … welll, just about everything.

Like balancing the awareness that cancer can recur, and that a certain amount of vigilance and “listening to your body” is called for, with trying not to think “so is this cancer or corona?” every time a physical ache or pain manifests itself. And to not be too impatient with the discomforts from the scars (but they ARE exhausting).

And the fear of the hormone blockers which the hospital recommends that I take with the realisation that not everybody gets those dreaded side effects. Something I will discuss with my gynecologist in the coming week.

And the need to get out and walk, visit cafés and meet friends for meals, but not overdo those so that I have to lie low for a couple of days in order to recover from the resulting fatigue (I was stupid enough to do that once in the first week back from hospital and once in the second week). Now that I am entering the third week back from hospital, I hope I have learned the lesson.

And with the rising awareness of the role that nutrition and exercise plays, educating myself (mostly on the nutrition side since I can’t do that much in the exercise department yet) and preparing healthy meals while allowing myself the occasional slip-up and not becoming a complete fanatic.

And taking care of the mental aches and pains with the help of guided meditations (I find myself using almost exclusively this channel) and about to learn more about qi gong (mostly this channel), instead of entering the spiral of negative thinking which I have always been prone to do.

And to not fly into a fit of rage just because to many people, THINKING has become so last millennium. Like the business with the ironing board. Until now, I have always put it away between uses, but it is quite heavy, so I should – OBVIOUSLY or so I thought – not really be lifting it, and given the fact that in summer I use it much more frequently, I left it out, FOR A REASON. So I came home the other day to find that my cleaning help had not only flattened it (??) but even moved it to another room (??). Let us just say that I am glad I followed my self-imposed rule to always sleep on it before sending a message written in anger. But seriously: WHAT. THE. F%§$!?.

No progress with the “Reha”. It is again a matter of two bureaucracies clashing. I have written twice to the clinic I am hoping to go to, Hamm Klinik Nordfriesland, asking them for a cost estimate for my sickness insurance, but they are not responding at all.

And finally, hoping to get back in photography mode.

After I sold my old and very heavy Canon gear and bought a much lighter Fujifilm camera and a couple of lenses, between diagnosis and surgery, as a distraction, I tried to watch some tutorials about the use of that camera (Fuji is a very different system), but was discouraged to find that my brainfog was such that I could not get my head around anything they were talking about. As in – even with camera in hand – NOTHING. This was scary, since this is not my first time around trying to juggle aperture, shutter speed, ISO …..

Since then, I have not had the courage to even look at the camera, and I guess the constant discomfort from the scars also distracted me, and I have been wondering whether I would ever get back in photography mode.

This worried me slightly since – what on earth would I do then – in the age of pandemics, avoiding crowds and rooms full of people, and without a dog? It is easy enough to enjoy the summer without having a hobby, but a long, dark winter is looming …..

So yesterday, I finally plucked up the courage to watch Michael the Maven’s excellent tutorial again, and again with camera in hand, and bingo – it all made sense, or at least as much sense as it could for a technical klutz such as myself. The rest is practise, practise, practise.

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 bump in the road Summer 2022

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.

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

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.

A bump in the road Summer 2022

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.

The life of a Danish pensioner in Berlin