I feel a bit lost in space…. happy that I had a wonderful weekend with my kids away from everything and panic that I start my reintegration into my job in three weeks time… ahhh!

Now, how does it work?

Due to the fact that I am starting the reintegration within four weeks after completing rehab, I am still entitled to the allowance paid by the pension fund, which I received during rehab (I have not received anything yet, but that is one of the issues I am dealing with tomorrow). The payments will end, when I am fully back in my job.

What happens, if the reintegration fails?

If I go back to being signed off sick, I will have to apply for unemployment benefits, as my entitlement for sick pay ended yesterday (at least for breast cancer – any other illnesses would still be covered) after 18 month.

Should I partially fail my reintegration, there is an option for a partial pension and should I succeed, I am back in the working world.

What if I have a reoccurrence?

I will only be entitled to sick pay (for breast cancer) in another 18 months time, as during a period of three years, I am only allowed to get sick pay for one illness for a max. of 18 months. Should I face a reoccurrence any time earlier, I would have to apply for unemployment benefits…. as if anyone would have a reoccurrence or metastasis on purpose?!?!

Well, for now, I hope for the best and until then I am marching step by step through the rest of March with therapy and my administrative paperwork jungle. Have a great start to your week!

Chemo buddy Claudia reminds me that we had our operations one year ago yesterday…. wow!

At the time, I thought that was it…I had successfully completed all chemos and operations, was blown up by cortisone and my hair – at least at the back of my head – started to grow again! The plan: operation, radiation, rehab and back to work end of summer …. but it doesn’t always go according to plan…. that is one thing I learned quite quickly with cancer – be flexible!

The rest of my tumor was removed along with the tumor beds and my chemo port and the pathologists would analyse the tissue to see, if any tumor cells are left. The magic letters every cancer patient want to hear are PCR (pathological complete remission) meaning that you are officially cancer free! Claudia received her PCR days before me, which made me suspicious! I was right, I did not get the PCR, as they still found active tumor cells. I still consider myself cancer free after my operation though, as the active cells were in the rest of the tumor and that was now in some petri dish in a lab and no longer in my body….

Nevertheless, it meant another five months of chemo pills after radiation, as you simply don’t know, if there are active cells anywhere else.

To add to my troubles, a few days later my operated breast burst and would not stop bleeding…. There was a massive haematoma in my breast and must have had it already leaving hospital! I had mentioned that the operated breast was quite massive, but the doctor, who examined it said „it is nothing to worry, as it is all soft“… I know better now, as this meant massive complications for me and it means that I will need another operation end of this summer.

Instead of being back in my normal life, I am still having to deal with my administrative nightmare that comes along with cancer, struggle financially and have no idea how ’normal‘ life will work, as my energy hit rock bottom months ago…. and still – I am alive and there are a lot of wonderful things in my life apart from all the hassle!

I am a bit swamped at the moment with bits and bobs instead of concentrating on everyday life without a household aid, but I hope it will quiet down and now it is the weekend and I try to recharge my batteries and enjoy quality time with my kids!

Do you fancy a little taste of what has kept me busy yesterday? I have to be with Mia in hospital to prepare for her upcoming operation to remove the metal from her leg, cancel the start of my bisphosphonate therapy in the light of an infection in my jaw, which needs to be fixed beforehand, organise the dental treatments through my dentist and try to get them paid by the insurance company, stupid calls regarding payments I made 2017 & 2018, objecting the insurance decision not to pay my 3D ultrasound, which detected my jaw infection, calls to settle the issues between the rehab social services and the unemployment office, handling bills, my luggage was damaged and I need to return some forms and the pension fund wants to have proof of when I started university 🤦‍♀️…. but I try to do one thing at a time and my priority is to take Mia to hospital and to have lunch with her and the afternoon is reserved to my kids – and despite all the trouble…. that is the only thing that counts – regardless of the fact that I am a wreck by the end of the day and pass out with the kids!

It is now 18 month since my diagnosis…. 18 month of doctor’s appointment, chemos, operations, radiations, paperwork and waiting rooms…. cancer comes along with a big administrative package!

So far I have ticked off a lot of points on my cancer journey, but today I am closing another chapter. My entitlement of sick pay ends this week and I need to go to the unemployment office to register as unemployed. I have never been unemployed and I am amazed how busy this place is….

Now, what does this mean? The unemployment office has a department for the chronically ill and normally I would now go from sick pay to unemployment benefits.

During rehab I get an allowance from the pension fund and if I start my Reintegration within four weeks after rehab, this allowance will continuously be paid until the reintegration is completed.

The people I wait with are from all walks of life…. old, young, different nationalities and I am wondering what their stories are… there is the macho, telling everyone how it works, while the fragile old man feels uncomfortable being here…

After an endless wait, the official is lost and has no idea what I want…. apparently they have never had a case, where the pension fund continued to pay …. I still need to register with them according to the social services. They have all my details and will call me back!

I receive a call from my dentist. The 3D ultrasound found that there is an infection in my jaw bone…. I need a root treatment in one tooth and another one in the tooth next to it, which was done 25 years ago…. the bone will then hopefully heal itself!

Problem 1: the bisphosphonate therapy can not start next week

Problem 2: I need to go to a specialist and am facing costs of appr. €1.800/tooth…. I need to speak to my insurance company, as my dentists thinks that it is unlikely that they pay….

To sum it up – I had enough…. it really is a never ending story and I just want to go back to normality and don’t want any further treatments!

9:45am and my FitBit Alta vibrates like crazy blasting fireworks to celebrate my 10.000 steps mark…. and no, I just started my sports programme with LaufMamaLauf. The simple trick was to celebrate Karneval until the wee hours of the morning 😉

I won my FitBit a month ago, just in time to test it during my rehab!

Can I recommend it?

Yes! By all means! It wasn’t love at first sight and I still don’t like the fact that it isn’t waterproof, as I love to swim and I get angry, when I leave the pool and my FitBit moans that I have not moved for a while… but generally I like those little reminders and I celebrate the fireworks I get – stop wherever I am and have to watch it!

The ultimate highlight is the monitoring of my sleep though! Fatigue is making my daily life difficult and now I know that I sleep very restless and have something I can work on…

I am back in my daily routines of doctor appointments, administration nightmares and regulations, but it all adds to my FitBit step account and that motivates me!

I am on my way home…. the Black forrest dressed for the occasion with sugared trees, as it snowed again last night… I have never been to the black forrest, but it is so beautiful. As we pass the last mountain before reaching Freiburg, all is covered in deep snow and I love this winter wonderland… we follow a snow plow and see the black clouds hanging over Freiburg – it is breathtaking …. I love the nature, the snow, the funny accent and the wooden houses, but enough is enough and I look forward to going home!

Would I recommend Todtmoos and the Wehrawaldklinik? It depends what you are looking for…. I made the most out of my stay, but I feel that it is one of the quieter rehabs from what I heard from other rehab facilities and I would have loved to see more yoga, meditation, relaxation, creative therapies and maybe creative sports, like Zumba or any feel good activities. Half of the patients are here for psychosomatic issues and they had by far more activities like that.

I am happy they do, but why would you not offer it to cancer patients? Isn’t our soul entitled to relax, unwind and try new things? Isn’t cancer something that can cause mental stress?!? Don’t we classify?!? Is rehab only looking at the physical side of things? If these activities are offered at the clinic anyway, why not offer it to cancer patients as well?!?

I have benefitted from the rehab and would say that it was ok, but I would not rave about it… I kept a little bit quiet and to myself, but some connections I made were special and especially during my last week, I enjoyed the company and conversations, but I really wanted to focus on myself and the peace and quietness!

What are your experiences, my fellow cancer folks?! What were your expectations?

I wanted to tackle my cancer fatigue, I wanted to get fit again and hopefully loose some weight (which was a success, but not due to any programme the clinic recommended, but just sports and healthy nutrition and being sick for two weeks), have some mindful me time, where I recharge my batteries (and the quietness and rest certainly were good for me), have someone work on softening my scars (I had once a week lymph drainage, so that helped) and return fit and strong into everyday life….. I doubt that I am much fitter or stronger, but I will wait what it will be like once I am at home!

Next step – Karneval in Nippes with my kids this afternoon, hopefully a wee bit of Karneval for myself tonight and starting my life without a household aid tomorrow…. wish me luck!

There is a new tab in my blog „What helped me?“ with things that helped me during therapy and I will continue to talk about rehab and follow up care! Let me know what you think and if there are any tips you would like me to include….

#feelitonthefirst – did you know that you need to not only check your boobs, but also the area around it until you reach the collar bones and arm pits?

Start with a visual check – is anything different? Any lumps, dents, any change of colour? Continue to examine the entire chests area laying on your back and side using the three middle fingers. Move in little circles all over your chest area in rows like a lawn mower. If you are not sure, there are several instructions how to do it on YouTube and websites like Brustkrebszentrale.de!!

There is no screening programme in place for people under 50 and you know what, in the mammogram my tumor was in fact hardly visible, as smaller and younger boobs are too tight for good results! Ultrasound would be a better, but it is not part of the regular check up…. and therefore it is your responsibility, as you are the expert, when it comes to your body and you need to look after it!

I will not get tired of repeating that I only found my lump by accident and I had only been to a regular check with my gynecologist three months earlier and there was nothing…. another three months later and I don’t want to imagine what the consequences would have been – I could literally watch my tumor grow and it scared the hell out of me…. breast cancer treatments have many options and advance fast, but the chances get slimmer the later the cancer is diagnosed.

My rehab is coming to an end and the endless days of sunshine as well…. my skiing plans will probably be replaced by more knitting and crochet work – anything that helps to get some feelings back into my fingertips 😉I will give you an update once I leave the black forrest, will digital detox a bit longer and try to find a bit of Karneval in Todtmoos!

I feel that I benefitted from the rehab, as no matter how fit, unfit, awake or tired I am, I had a time out to focus only on myself and I could mentally recharge my batteries…. the fatigue is still there, but today is actually a good day – right now I feel slightly more awake (which might be different in an hour, but I am grateful for any small improvement along the way)! Onwards and upwards ❤️

Gee, I really should play the lottery…..

According to the rehab doctors it is a miracle that I have not developed a lymphedema yet, as we are being told – and no matter if only one sentinel was removed or 20 lymph knots – the following are total no gos for us:

– sauna, sunbathing or any kind of heat (oups….18 months of sauna…. guilty)

– increasing your circulation (no extreme sport, no massage, no heat…. whoops…. I love massages and my sports)

– weight lifting with the concerned arm (no lifting of anything heavy actually, no working with weights, etc. and no yoga positions, where the arms hold any of my body weight…. same goes for push ups, etc….. hmmm…. tubes, push-ups, burpees, yoga…. guilty in all aspects)

– extreme Probleme fast movement with the arms (no Nordic walking… – I might be ok here 😉)

Apparently, you can develop a lymphedema years after your sentinel removal and once you have one, you keep it forever. Hmmm…. I think there is more panic than necessary, but I shall be cautious – in some areas 😉

Rehab recap – I feel still extremely exhausted and I have no idea how to handle everyday life, but will give it a go. A bit of normality is maybe just what I need… step number one – learning to handle life without my household aids. Step two – finding back into working life: Reintegration will start April 1st and if all goes according to plan, I should be up and running by mid May…. theoretically! The doctors don’t think that this Willen enough time, but it is the maximum they can suggest and my doctor at home needs to adjust it according to how I am coping. I just hope that the fatigue will go away …. the miracle Talasar pills did not do their magic, but at least I tried! I enjoy the peace and quietness, the sunshine and will benefit as much as I can from the sports offered! Our walking rounds have really accelerated and after climbing the stiff hill to the clinic, I need a break! I sneakily sit in the sun for a wee bit enjoying my time before the weather shall turn tomorrow…

Oh and yes, we watched the Karneval parade with „Narri Narro“ instead of „Alaaf“ confetti instead of „Kamelle“…. what an experience…. as long as you don’t start comparing 😉

Hello World, hello Life!

Since my cold stuck like glue and the doctor heard something in my lung, while my inflamation levels are high, I was put on antibiotics on Tuesday. There is improvement… finally …. at long last and I am glad I had booked a day trip to Freiburg today!

Rehab recap so far….

Todtmoos is an internet free zone and mobile reception is next to nothing (at least for Vodaphone clients like me – they dream about 3G, but only get Edge…. in some place). As a consequence a little bit of digital detox comes in quite naturally for a while and I deliberately decide to not buy hotspot access and take a time out, but it is lovely to finally update my FitBit (it actually believes that I have not slept for a week 😳), check my messages and do anything I cannot do on my laptop…. and another highlight is to catch up with my fellow cancer blogger buddy Leukofighter Alex, who could not make it our blogger workshop, but who actually lives in Freiburg!

He shows me around town, there is Guggamusic blasting through the alleyways and it is great – the sun is shining, we even see the French Alpes, I see and learn a lot about Freiburg, but most importantly, we chat away and it is so good to see him!

Due to my cold, I have now missed out on two weeks of sport. Actually, I still did all sport programmes like mobilisation gymnastics, Qi Gong and yoga, as my pulse does not even rise, but I got the no go for swimming, aqua gym and walking…. in a way, the calm was good and I hope I can be back on a fitter track starting Monday!

What did I do in the meantime after my kids departed?!? I am the proud producer of a knitted hat and scarf and I used the sewing machine the creativity lab to make a hoody and cardigan for myself, a loop Mia and long sleeve for Leo …. I am reading and sleeping and it is good!

I don’t think that this rehab is increasing my fitness level, as it seems to be tailored to people, who are very sick, old or have never done any sports, but I still benefit, as I can do things my way.

For now, my main goal is to find back into normal life without a household aid and after April 1st into working life…. rehab is actually planning my reintegration with my employer and I am guided into the next steps: getting signed off sick from the day after rehab until the end of reintegration and registering with Arbeitsamt, as the health insurance payments end March 9 – which is ok, as the pension fund payments, which I get during rehab, will continue to be paid until I am fully back in job…. there is a lot going on and I am grateful that I am getting the support!

What are the rehab people like? Everything and anything… all walks of life, but I am one of the younger folks…. and now I am on my little pensioner bus returning to rehab!

I am sick as a dog – a really bad cold kills my last energy….the kids are here and I simply do not have the nerve and power to do things with them the way I want to. If at least I could sleep in their apartment during the weekend, but the clinic said no 😢… I see their point that I am ill and I need a good night’s sleep to recover, but it is so hard to leave them at night….

There is also a positive side to everything though and due to my cold, I am not allowed to go to walking or aqua gym, which means I a lot more time with the kids and Monday, I just have to switch a seminar and can spend almost all day with them…. Yipehhhh!

It is the hardest bit during this whole cancer journey though! As much as my kids motivate me, give me strength and structure to my day, not being able to be there for them as much as I want just hurts. I am too tired, too thin skinned, too weak….. and it is something I just don’t want to accept!

It hurts and I push myself and as hard as it is, I have to admit that I am at the moment not fit enough for my kids! Daily life actually scares me right now and I have no idea how I will find my way back into working life, but this is one of the goals of rehab….

One problem though: Being tired all the time, means that I have no reserves for colds or other illnesses, which might play it’s role in the whole dilemma though and I am waiting for my mind to clear 😉

I am still happy to have my kids here and to generally have my kids, but I think that I will probably benefit best from rehab after cold and kids have departed.

My mind spins, after I see a terrible accident yesterday, where three kids on a sledge crash high speed into the end of the slope – just meters away from us – and are being catapulted into the air to crash onto the frozen ground and some abandoned concrete pipes. I still see them flying in slow motion and one girl, the eldest, probably 10 or 12, was actually flown to Freiburg with severe injuries!

They did not wear helmets and neither did Mia and I, as we just returned from the ticket booth. I had my back towards to slope and did not even see them come…. I am hoping that the kids will be ok, I am grateful that none of us were hit, I love my kids and it breaks my heart! Helmets can save lives!

Today I actually notice the first improvement…. yipehhh!! Onwards and upwards!!

PS: i am really bad at replying to messages of any kind – the internet is dreadful and sometimes I receive messages, but it doesn’t mean I can answer 🤷‍♀️ thank you for your understanding!

There is fresh snow everywhere and the clouds open. I feel the warm rays in my face while doing Qi-Gong and I feel happy.

I feel I have arrived in rehab mode. The new doctor wants to see me today, as the lung test shows that my volume is restricted, which is probably due to the pneumonia I had December 2017…..She examines me, as I am coughing and says I should not trivilise my cold. She takes aqua gym and walking off my schedule, as I have a bit of a temperature, prescribes some medication and I shall see her first thing tomorrow morning.

While the vibration lounger is loosening my tight muscles, the psychological group session catches my interest. There is one man amongst us breasties – yes, men can also have breast cancer – and it is a new perspective.

I have a vibration therapy for my fingers on an Anduflex cushion and now I want to go to the crafts room before I have a single session with the psychologist…. I stroll along, at ease, and look forward to a little rest in between taking in as much sunshine as I can. It feels so good….

What I forgot to mention yesterday, is the blue fatigue brochure I received. It is published by German Cancer Aid, German Cancer Society and German Fatigue Society.

The blue guidebook series includes approximately 150 brochure, all well researched, tailored to patients, relatives and anyone interested. They cover all different types of cancer, but also related topics like prevention, fertility, fatigue, etc. Not only do they give answers to medical questions, they also offer help and show perspectives. The booklets are available with most onchologists or can be ordered directly via the German Cancer Aid website.

Deutsche Krebshilfe (German Cancer Aid) is a non-profit organisation financed purely by donations and definitely something worthwhile supporting.