13 September 2017

I speak to the Taxi company „TaxiRuf Köln“ in order to get everything ready for my free taxi rides – they are insisting that I see them at the other end of town and I can barely talk, as I have two screaming kids. I am frustrated and try to arrange everything…. thank god, she calls back later to tell me that I can actually send it to them as well! Off to LaufMamaLauf (my wonderful running Mamas) again! I cannot do any arm excercises, but all the rest and it feels so good!

In the afternoon I join the „look good, feel better“ make-up course in Holweide. „Why Do you have so much hair?“ well, I am one of the only ones, who do this one day pre chemo 😉

Parminder is in her late 20s and has very short hair, which looks very soft like baby hair – she had finished the chemo in May…. OMG after chemo it takes this long for a little bit of baby hair to grow!??! She also told me that the lashes and eyebrown were first grey, when they grew back – well, they tell us how to put eyebrow makeup on without having eyebrows!

One lady looked really tired when we started and was glowing by the end – it might as well have been the huge bag with complimentary make-up though, which you get.

I managed to get a last minute dental cleaning appointment afterwards – apparently it is fundamental that your teeth are alright and I am grateful.

My friend Andrea tells me about Tatjana Richartz. She is a hair and make-up artist, who used to work for the movies and now has a little salon with hair, make-up and wigs. I have an appointment the same evening.

They are amazing and I cancel the appointment in the grim wig shop straight away.

Talking about wigs. The insurance only pays the minimum of €350, which seems a lot, but if you get something in this range, you look like a playmobil woman. Therefore I will face to pay a bit more, but that is ok.

So many people want to help and Eva said that a regular schedule helps a lot… I think about it and select a few people who I put into the What’s App group „Alex needs help“. This way I have a single point of contact, if I need quickly help with something and they can decide amongst themselves, who could help – with all this in the back of my mind, I think I am ready for chemo No. 1 ….

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12 September 2017

The tiler is here early early and Leo gets all excited and meets him with helmet and all his tools, ready to assist. Bless!

Off I go again to Holweide – bone scintigraphy! Oh joy, once again they inject some radioactive substance and I need to wait for three hours until they can check my bones.

I visit Elke, who is still in B5 and have my first meeting with Beate Rahn, the psycho oncologist – she seems a bit tired and I have the feeling that I should cheer her up, but listen to her. I shall concentrate on my healty cells and come up with images how they protect themselves from the red poison, e.g. wearing raincoats and rubberboots. That sounds a bit boring… well, I worked on cruiseship and my little green healthy cells will go on a cruise and have a lovely time during cocktail parties, while being safe from the poison. Whoohoo!

Back to the nuclear medical department – they check the bones and the doctor … it is the nice one again and I should get his name… says that my bones look ‚unused‘.

I go downtown to our office and have a quick lunch with my colleagues Bernadette and Sonja before meeting my kindergarten friend Lars to go wig shopping. Mom and our babysitter Lilli take care of the kids.

Meeting Lars is often as if we had just seen each other and instead of wig shopping, we just chat away in a cafe.

I enter one of the recommened wig shops by myself afterwards and find out that you actually need an appointment… but the place is scary and very dusty.

I decide to go for dinner to „XII Aposteln“ by myself and catch up on the paperwork – being German I got myself a huge folder for my cancer project 😉

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Lars

11 September 2017

Markus is off to Cincinnati for 4 days, but Mom will be here, as I will be radioactive and should not go near the kids the next day….ahhh….Today I should find my way to the pioh center, where the oncologist, Dr. Reiser, meets me for a first chat before the chemo – I was still hoping that we would do the 4 cylces only, but he confirms that we do 4 EC (Epirubicin and Cyclophosphamid) and 12 T(Paclitaxal), that I will loose my hair after the second cycle and that EC has the heaviest side effects – sickness, vomiting, hairloss, low immune system, necessity of blood transfusions, which they can also do… lucky me…, allergic reactions, etc…- but every patient is different. „No worries, I want to do the full chemo“ and Dr. Reiser says he would wish for more patients like me. I double check that I should really not drink ANY alcohol – „you can have some, you might just not tolerate it too well“ hmmmm… he says that sports are actually not only ok, but benefitial for chemo.

The advantage is though that I now get free taxi rides to pioh up to five times a week – yeah!

He wants to start Chemo on Thursday, but I should doublecheck with Holweide, if they see any issues with that… I am a bit sick now after all that, but Maja is not far away and meets me at Cafe Fleur for a quick coffee and drops me off at home. Maja’s friend Sabina did the whole breastcancer thing….I can do it!

Meanwhile I have spoken to Caritas to get someone to help me at home. Markus changed his working times in order to bring the kids to kindergarten in the mornings, but I still need someone to pick them up and look after them until he is home. They have a long wait list, but tell me about an organisation called „Home Instead“ – Frau Raticova assures me that they will arrange someone for the following week, if the insurance company agrees – I like her straight away and try to pronounce her name correctly 😉

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This is next to pioh – I need to tell my friend Hannah about it 😉

10 September 2017

I meet my colleague Eva for a second breakfast and get the book „Why does Mom wear a cap during summer“… Lovely catch-up and off we go to fly home to Cologne.

The Red Cross is wonderful again and while I wait at the bulk luggage for Leo’s car seat, start chatting to a lady, who sits next to me, as she asks what is wrong with me. „Breastcancer“ and she tells me a bit about own experience. Then she asked me when I was diagnosed and I said 10 days ago „I cannot believe how you speak about it having just been diagnosed“ and I make a note to keep it this way.

The car seat arrives in 1000 pieces and he Air Berlin – nevermind that they only still operate because of my tax money – let me down big time…. I am forced to take the pieces home to later prove that it was actually destroyed … ahhh … idiots – how am I supposed to get Leo home without the seat?!?!?

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9 September 2017

My bold brother Micky, his wife Anna and the kids Finn (my other godchild) and Janis join us in Freising and we go to their annual fair with loads of rides and great bavarian food.

I feel that this might just be a wee bit too much for day two after the operation and they take Leo and myself back to their place in Munich.

Changing the bandages hurts, but mainly because I have to wear a tight bra 24 hours a day and I have difficulties lifting my arms, as the sentinal wound hurts on the left side, the port on the right side and I do not even notice that the left breast was also operated 😉 – the bandage covers the whole in my breast where the tube with the sole secretion bag was and the plasters are really sticky…. so it really could be worse – Sleeping however is a real pain, but we are getting there.

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8 September 2017

Somehow everyone in this hospital thinks that I will stay for another two nights!?!? They want me to keep the bag with the sore secretions, which is hanging on my body and I certainly will not take this home 😉

While they decide, if I can leave or not, I have my first appointment with the Breast Care Nurse, Frau Eßer – what a lovely lady! I get information on a make-up course, wig shops, tips to cope with the side effects of chemo … and there will possibly be a lot and I am being told that I am not allowed to carry anything – GREAT – how shall I fly to Munich with two little kids not carrying anything!?!?

Well, first I need someone to pick me up from hospital and drive me to the airport, then I try to get Air Berlin to give me assistance, but no luck. I actually get the German Red Cross at Köln Bonn Airport on the line and they will help me out! Perfect!

Andrea – one of my mummy friends – picks me up and drives me home. I will only take Leo with me to Munich to make things easier…. Simone – Mummy friend number 2 – picks me up  45 minutes later to bring me to the airport…. Oh no…. I forgot ALL my paperwork, mobile charger and everything from the bedside table in hospital. I will get it on Tuesday!

Everything goes really smoothly, Leo meets some other kids in the plane and Anke (my friend from Ealing) and her daughter Lale (my godchild) pick me up! Great to see them and chill a bit in their garden, while the kids enjoy the trampoline and make pizza for us 🙂

Anke’s husband Jan, who I met during my flight attendant training and studied with in Ealing, show me a book „Cancer cells don’t like raspberries“… Interesting! I have already cut all all white sugar since the diagnosis! I am also drinking a lot of fresh carrot juice, as this should be good 😉 Well, it won’t do any harm either….

7 September 2017

It is the day of the B2B run, but my colleagues are running without me, as I have to be early early and sober in Holweide…

I am there with another 9 women to be operated. They have appr. 600/ year!

Prof. Dr. Warm is really nice and explains that they will first mark the two tumors (No.2 is only 5mm – I did not feel it, but he pointed it out and there it was… felt like a little pea under my skin) and then they will remove the little one during the operation.

Prof. Dr. Breidenbach told him about my plans to fly to Munich the following day and he said that this should not be an issue 🙂

I get an aditus and in the MRT they locate the tumors, stick some massively long and thin needles into my breast to where it is, put me into the MRT again to see, if it is in the right location and do the same again. It is not nice and I have these long wires sticking out of my breast 😉 – they tape them and I can go and check in to station B5. My escort should take my little suitcase, but I have no escort and manage alright. Feel a bit lonely though.

In B5 they nurse asks me to remove all my jewellery and put on the operation shirt. I have a little wristband with Mias name, which I cannot get off – she says that it has to go…. and I cry – Breast Care Nurse Frau Eßer gives me some tissues and says that we can tape it 🙂 She also gives me a heart shaped pillow – there are volunteers, who make them and apparently they are the hot stuff for breast cancer patients, as they give the sentinals a bit breathing space, they also take pressure of car seatbelts off the port. Thank you!!

There are no single rooms anymore, so I meet Elke – she is almost 60 and survived breast cancer 7 years earlier… now she have ovary cancer. It was discovered quite late and a lot had to be removed…. make a mental note to insist on vaginal ultrasounds in the future, as this is the only way you can see this early enough!

I wake up in the late afternoon and feel slightly sick… was not allowed to eat or drink all day and it is past 4pm…I drink, take some medication and Markus comes to see me. I am so tired and sick that I don’t want to talk and he seems quite relieved, when the oncological psychiatrist arrives to introduce herself – I cannot face that and tell her that I will see her the next day. She has just left and I have to throw up all the water again – Wow, sudden relief! I feel good and have some bread 🙂

I get a massive amount of messages and I am really touched! I will post it on Facebook, but for now I am busy enough with the flood of love and attention coming my way and it helps me a lot to talk about it and feel being loved!!!

Prof. Dr. Warms comes to see me late that evening, tells me that all was good – apart from quite a bit of milk, which made their job difficult, but nothing else was found and the sentinals look ok! „Have a nice flight!“

I cannot sleep as I am not a back sleeper and due to the sentinal and breast operation on one side and the port on the other side, it is the only position I can possibly imagine… well, Elke cannot sleep either and chat away 🙂

I download the audio book „Am Arsch vorbei ist auch ein Weg“ and the voice of the author is tiring enough to make me dose off.

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6 September 2017

I am back in charming Holweide for the CT and get into the CT. I lay there and a computer voice tells me what to do… I shall not move and suddenly tears are running down my cheeks. Maybe it is the first quiet moment after the diagnosis – maybe it is the feeling of being exposed? I leave and know that the MRT is two hours later. I rearrange my paperwork in a quiet corner and dry my tears.

The guy from the CT asks me, if all is ok and insists to talk to me. Now I really have to cry. He takes me in his arms and tells me that all will be fine – I love that guy. He organises for my MRT to be earlier and walks me over there. His wife just had a baby 4 months early and it was a life and death matter for both of them – yet he is so positive and gives me so much energy.

The MRT is really noisy and I get ear protectors. There are two holes in the MRT table, where you have to place your breasts… feels a bit like being at the butchers.

He checks on me after the MRT and says that he has arrange for a doctor to see me now, so I can get the results. THANK YOU!! (need to get his name again!)

The doctor (need to get his name as well ;)) says that we might as well locate the sentinels there and then and injects some radioactive substance into my breast, which they check a little while later in the nuclear medicine department.

There is another little tumor towards the center of the breast and something in the liver, but all fine. Heart and everything else are ok and I am ready for the operation!

Before I leave the hospital, I buy some chocolate to give to CT guy, but as I do, I am already crying again and we both laugh 😀

Mom arrives to look after the kids, while I am in hospital and we go with the kids to gymnastics. Eva, the trainer, is shocked and really nice – the support and love I get is increadible!

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Thank you, Christian!

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5 September 2017

Holweide – what a welcoming site… NOT! I feel like I accidently ended up at some rehab center judging by the scary figures, who stand outside smoking.

Well, inside they are actually really nice. I have to do all the paperwork, then go to the cancer station B5 to have a talk about all that is happening. A young doctor explains how the port will be placed on top of my muscle with direct access to some larger blood vessels – the small once would be destroyed by the chemo .. nice thought! She says that a cylce is normally one time chemo plus 2 weeks rest and suddenly says that there should be 4x EC with two weeks rest and then 12x T weekly… ahhh this is more than I thought…. OK – operation first! They will locate the sentinals injecting radioactive matter – this way they will not have to remove all lymph knots and a biopsy of the sentinels will then tell them, if the tumor has spread in the rest of the body.

I use the time between appointments to talk to Eva, my colleague from Munich, who survived ovary cancer 5 years earlier with two small kids. I get all useful information and arrange to meet with her in Munich the following weekend. Interesting that you even get a disabled ID card…

More administrative work, signatures, etc. and I see the anaesthetist – strange character. CT and MRT are lined up for the next day!

I am glad to dive back into my daily routines, seeing the builders, picking up the kids, going to gymnastics and meeting the girls for dinner and drinks!

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4 September 2017

The rest of the pathologic results are there – the tumor is a little bit hormone receptive, which is good, but a little bit more would be better (ER-ICA almost 10%, PgR-ICA 5%, HER2-neu 0%) and the amount of cells, which divide themselves  arbeiten any time is 80% – WOW that is what I call fast growing!

The good thing is though that the chemo can only get into the cells, while they divide themselves biggrin

She wants to start with 3-4 cylces of chemo…and often the tumor then already disappears all together, but they will still have to operate afterwards. I will loose my hair in the second chemo cycle and she says that I should get a wig in any case. I don’t know, if I want one, but her point is that I do not know how I will feel down the line and if there is an 80th birthday and I don’t feel good, I have the option to wear the wig and not face any questions.

I don’t even want to think about the chemo yet and concentrate on the operation first. I have a whole list of appointments lined up – that should keep me busy!

I will be off sick for at least 9 month – realistically one year!

Prof. Dr. Breidenbach will assist Prof. Dr. Warm, who will operate me on Thursday – see you there!

I call my insurance company AOK NordWest and ask them how they can support me and they will pay for either a friend, who helps me with the kids, 90% of Markus‘ salary, if he takes unpaid leave or a household aid. Excellent!

I visit my colleagues at HRG afterwards and make sure that everyone is aware now. No energy to go to yoga…. well, not that I did not do enough yoga during the weekend 😉

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