11 February 2018

I am sooo exhausted, but it was actually Markus, who went out and I was in bed early 😉…. yet, I take it easy today after getting up with the kids! No need to be ill again and Karneval with all the crowds and everyone kissing each other, is the worst time of the year anyway!

It is Karneval parade in Niehl today and since Nina & Stefan live en route, they invited a few people for a pre parade soup & drinks get together… just my thing and having a place, where you can use the loo and warm up or rest in between is priceless…. Dress up, make-up, off we go!

During Karneval, chemo looks are actually really handy… no worries about make-up in the hair line or any hairline at all …. no worries about hair not fitting under my wig, no need to hide eyebrows 😜

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10 February 2018

I was so upset yesterday, disappointed, tired, hurt and all the hassle with the insurance company, who on top of all decided to send me a registered letter to confirm that they are cancelling all support, while I am out of Germany. I am fine though – I am honestly beyond caring, but this was not what I needed after chemo. The next bomb that exploded was the news that my company will be taken over by Amex, which will be interesting …..I clean myself up and what a difference a bit of make-up can make 😉

I join Sylvie in the Oellig pub – I love Karneval …. but I take it easy, do not sing too loud to save my lungs, have no alcohol and leave early! I will meet my friend Hera next week in Singapore and who do I bump into on the street?!? Three of her kids ❤️ I have not seen them for ages and am thrilled!

Today my brother and his kids are arriving from Munich and we might go to one of the smaller parades in our hood, but we will take it easy. Karneval celebrations are lasting until Tuesday night and it is the best time of the year and I am happy I can join in a little bit!

I should probably start thinking about what to pack for my trip, but then again…. I probably don’t need much anyway 😉

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9 February 2018

Post chemo recap:

  • hair, shaved, but regrowth noticeable (down on back of hands!?!?), but still nothing to shave on the rest of my body
  • lashes – second set almost all gone again
  • eyebrows – second set almost all gone again too
  • skin – super dry inside and out
  • weight – total gain of 7kg!! Feel extremely fat and uncomfortable in my skin, but the Indonesian cuisine will help
  • water retention – I hope it is not all fat, but water as well that causes my face and body to be blown up like this…
  • bones – hurt a bit, but hopefully a bit of light yoga and warm weather will help
  • fingertips – numb, but it can only get better
  • lungs – a bit short breath, but no coughing – only a mild cold and this is probably due to the dry sinuses
  • nerves – raw… I have no patience, am very thin skinned and easily upset and anxious and super emotional – looking forward to more meditation in Bali
  • brain – foggy … guess I am on the highest concentration of chemo poison now
  • perspective – brilliant …. onwards and upwards from here now, as there are no more chemos lined up

I guess I need to change my diet now, as the comfort blanket of chemo is slowly disappearing and there is still a bit of tumor left…. In a way it is not only the routine that is missing, but having the poison every week, gives you comfort that you are ‚doing‘ something to fight the beast…. until the radiation, there will be enough chemo poison left to make sure any tumor cell left will not have a chance to grow now…. That is my idea of dealing with it now anyway.

Yes, chemo is over, but that does not mean I am back to normal…. and I do not appreciate anyone telling me that it is. Six months is apparently needed to recover from chemo and this is not only concerning the obvious damages visible from the outside, as my hair will grow quickly. I thought about it last night, as I had hot flashes…. yes, this is now ‚artificial‘ menopause, as chemo killed my fertility, but this will continue for the next five years, as the anti-hormone therapy has the same effects… great outlook. And it is probably joined with weight gain again… oh joy 😉

What will help? Carnival therapy – I might dress up and join Sylvie and the crowds for a little while! 🤡 … give me an hour and I will be home again, but hopefully in a better mood 😉

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The naked truth post 16 chemos….

8 February 2018

Why do these things always come at once!?!?

My mental state is weak – one day post chemo – yet, I have to urge to get issues out of the way, tell people how I feel and when they hurt me. I have accepted that I am vulnerable, when I talk about my feelings, but I do not have to pretend that I am all strong.

It is freezing, but sunny and I ride to my beautician appointment, do some grocery shopping and notice that the first the crocuses are appearing…. reminds me of my hair slowly coming back… I might stop shaving now that chemo is over 😉

After I come home, I am exhausted and just need some rest, as I did not sleep until 2.00am, but my insurance company (AOK NordWest) calls me twice (bad communication on their side) to tell me that I will not get my sick pay and no household aid, if I leave the country. I am very thin skinned today and actually cannot help myself, but cry on the phone and do not appreciate that they put me through this twice. The point that really upsets me, is the fact that I have survived five months of chemo with two little kids at home and I am in a very weak state right now and yet I have to fight here. My doctors say that I should do what is best for me and to travel to Bali is my way of regaining strength for the operation and radiotherapy. I went to sea for nine year and travel is something that really does not stress me. I have organized to get help on the way and therefore I do not see what difference it makes, if I travel within Germany or leave the country, but this is Germany and there are rules and regulations. I do not consider this a holiday…. anyhow, I clean myself up and mobilize my last energy to find alternatives. I am accumulating leave days at work, while I am ill, maybe there is a win win solution from that end, as one of the breasties suggested?!?! I am checking with HRG and my doctor. And concerning the household aid, I will contract them myself during this time. I have managed so much, I will not let the insurance company spoil this last minute. Bali I am on my way! No matter how…. This is emotional stress that I really don’t need right now.

I cannot rest now anyway and there has been enough crying for today …. It is carnival and I put some makeup on and go and celebrate with my kids – very low key though at a Nina’s house 😉

7 February 2018

Today’s taxi driver did drive me a few months ago, when I was still on EC and he is sooo excited drive me to my LAST chemo 🎉

The health insurance calls me, just as my blood is being tested, to tell me that I am allowed to go away for two weeks, but not outside Germany….. I don’t care, I will go, even if they do not pay my sick benefits – who cares?!?? I still have savings 😉 so far the AOK NordWest were brilliant, apart from the ridiculous amounts I had to pay for the wig, which I have accepted …. despite the fact that it lives a sad life in the cupboard, I use it like an emergency blanket…. – let’s see what will happen – I really don’t care right now as long as my kids are ok and continue to have their rhythm while I am away 😀

As chemo runs through, I notice that they forgot the cooling pads….. maybe because nurse Fassbender is not there?!?! I do have to say good bye to her! My eyelids are so heavy…. I cover myself with my coat and literally sleep as my head hits the backrest of my chair….

„Frau von Korff?!?!“ I open my eyes in panic and dash up „Did I snore?!? “ I was deep asleep and even dreaming ❤️…. „Noooo, you are done!“ I cannot believe it! My LAST chemo is over 😎 just like that – nothing I had to do 😉

I thank the team, Dr. Reiser and suddenly nurse Fassbender is there as well – what a joy to see her. A final advice from Fassbender’s wisdom: „Even, when your hair is back and you look fit and healthy and everyone is expecting you to be yourself again, give yourself time! Your body will need another six month!“ Thank you ❤️

I am looking forward to say good bye to my blown up cortisone face and body, the aches and pains and all the rest – I look forward to reading or any concentration span that lasts longer than one minute, eyelashes, eyebrows and hair, everything….. I am tired, drenched, but relieved! Good night!

6 February 2018

What a day, but some things need to be done!

I see Prof. Dr. Breidenbach to get my MRT results. There is still a 4mm tumor visible on the MRT, but all is good. She is currently considering to only remove the tissue around the tumor, then see if there are cancer cells in the ducts between the two tumors and if not, plan radiation as the next step, but will consult with Prof. Dr. Warm. Oh well, my duty is now to recover and get some strength for the operation and the next steps 😀 No problem there….

I drop off yet another sick notice at work and visit the DKMS life offices, where I meet another Insta cancer girl. The cosmetic seminars for cancer patients, which they offer complimentary, are wonderful and I am happy to support them by sharing my point of view as a patient.

The afternoon is filled with more admin work in hospital Holweide… the administration when you have cancer is a part time job in itself, but the social services help me to apply for the handicapped pass and I look forward to all the benefits!

It is snowing, the tube system has it’s issues with it and I have to dash with fireman Leo to a dress up kids gymnastics session….pfew…. I am happy that Mum is arriving (with loads of schnitzels and potatoes ;)) to support me.

Tonight is our regular dinner date with the girls and look forward to a quiet evening before my LAST chemo tomorrow! I cannot believe that chemo is almost over….. somehow I am a bit sentimental. The weekly routine has given me a rhythm, something to do and somehow a regular life – will there be emptiness in my life?!? No! There is Karneval, Bali and the prep for my operation to fill the gap, therefore I am not really concerned 😉

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5 February 2018

Today is a good day – I slept next to Leo, who was not feeling well, trying to not fall out of bed and having his feet in my face, but full of happiness and I feel much better and stronger today. I will take it easy, as I need to be fit for my last chemo on Wednesday and for my trip next week. I have not even thought about it much – I guess sun protection should be my greatest concern, as chemo patients should by all means avoid the sun. I will take care of that tomorrow 😉

No matter how I feel, I always get up with the kids and we have breakfast together, but I often return to bed with coffee number two after they leave. This is where I am now, the sun is shining into my face and I am enjoying the peace and quietness. I meditate and it it is time to get up, dress up, put some make-up and embrace this beautiful day. Today I feel gratitude for what I have – I am really lucky!

Thursday is the start of Karneval and I still have to dig out our costumes, but we have so many, that I do not really worry. I love Karneval and my brother Micky and his sons will stay with us and on Monday, I invited everyone to our ‚open house‘ breakfast, which I have been doing for years. I am an open house person in my normal life, but since being diagnosed with cancer, I no longer want visitors and rather meet somewhere else. Maybe it is the fact that I can easily leave at any time, if I am not well? I don’t know… this is different though!

I meet Hannah for a quick coffee (for a change in Café Wohnraum 😉) before physio and I am all happy until Prof. Dr. Breidenbach cancels my appointment for the next day and I panic… By the afternoon it is rescheduled, but these little things completely throw me off track lately… I pick up Leo and spend the afternoon with the kids, as much as I can and decide not to go to yoga. I do not want to risk anything and rather rest than do too much – lesson definitely learned here 😉 …. and Markus is happy that he can go instead.

4 February 2018

Yes, yes, yes, today is world cancer day! I do my best to raise awareness and cancer research has gone a long way, but still needs more support to go further and one day beat the beast all together!

Anyone can get it, nobody is safe and there is nothing you can do…..but if you have cancer, you are not alone! I am amazed by all the support I am getting – I am much more on a receiving than a giving end lately and I appreciate it a lot! My family & friends, strangers, doctors, other patients, charities, anyone, who I am in contact with and this whole social media network are amazing – thank you for being there!

I am awake during the night, sleepless, thirsty and tired, but no rest for the wicked. Mia starts singing at 5:30 and I get up at 6:15….. I enjoy it though, bake my first mini pancakes ever and Leo joins us. I am exhausted though, when Markus gets up and takes over, but full of happiness ❤️ The rest of the day, I spend in bed and hope it I will be ok again tomorrow 🙄

It is Sunday and hard not to be fit enough for the kids, especially, as they are so sweet and caring, when Leo says he also needs a rest and joins me, as it is quite difficult to rest alone and then teaches me all about his paper aeroplane in great length all details …. It just makes me feel weak and lonely and I feel I am not living up to their expectations, but I do not have the strength to get up, leave alone go outside and join them on their trip to the zoo. I don’t even manage a shower 😜….This is what I hate most about the cancer though – the distance I feel it sometimes brings between the children and me! Then again, I am probably just having one of these very thin skinned and emotional days 😉

3 February 2018

It is a tough day with mixed emotions, a lot of tears, but also happy memories and laughter. It helps so much to have my school friends there and to hold and support each other, but I leave with a heavy heart full of sadness and sitting on the train to take me back to my ’normal‘ life, I feel drenched and alone.

Death is something, which I have not been thinking about much lately. The thought was there in the early days around my diagnosis and sometimes in between, but today it was so present, so close and I still think that it is so unfair…..life is fragile and so am I today.

I had never heard of the Friedwald concept, where one gets buried in the forest by a tree, but it is something that suits Sandra and I would consider it for myself.

I am extremely tired and on one hand happy to have a little time by myself before Markus and the kids come home, since Markus is going to the Kettcar concert tonight and I need to be fit for the kids. On the other hand, I cannot wait to be with them, as they are full of life and happiness and unconditional love and mean the world to me ❤️.

2 February 2018

I am one day late, but it is important and here it is: on each first of each month it is boobie check day! I honestly never checked mine, but found the lump while showering! Breast cancer is one of the best curable cancers, if caught early enough! Check yourself and if you are uncertain, rather have it checked out and insist, if they do not check it properly…. I was lucky that my doctor called a specialist to do a biopsy right away on the next day and I will always be greatful for that, as my cancer is a really aggressive one, fast growing and happyly metastatic, Bit at this point it had only spread locally!

Chemo 15/16 came and chemo 15/16 went…. I feel fit and ride to my physio at 8.00am, followed by podology (lost my little toe nail already and one of the big ones will be next 😢) and my MRT/ MRI appointment at the Hospital Holweide. These appointments are scary, but I am all positive, as there was nothing left of my tumor on the ultrasound.

In the radiology hallway I bump into Regi, the wonderful guy, who comforted me when I was crying after my first CT scan. I ask him about his baby and tell him about Bali. We chat about India and he says that I should go to Kerala. „I have been to Cochin and my neighbours actually have a hotel there!“ „The Killians?“ Yep – they are good family friends….. I love these small word moments!

The MRT starts not so good, as they need three attempts to put the access for the contrast injection… I almost faint after the second attempt due to low blood pressure and am being put on a stretcher for attempt number three, which is successful 😜

I seem to have a needle issue lately, as I felt the port being punched quite badly yesterday and they needed three attempt at the genetics test as well to take blood 🙄 the MRT goes all smoothly though and I will get the results next week, when I see Prof. Dr. Breidenbach!

I am on the train to my parents, as Sandra’s funeral is already at 8:30am tomorrow morning and Christof collects me already at 7:20 😴…. in my suitcase is my wig. I might wear it tomorrow for the first time, but see how it feels. Somehow I think that this is Sandra’s day and that the cancer should not be a subject, but since it is all outside, I might be ok with just the hat…. we will see!