Up and down

There is so much up and down in this journey.

The biggest down being the diagnosis. But if the treatment doesn't work, that would be a much bigger down I guess. 

Another down would be the fact that I have been handling the chemo worse each time...last time it took me almost two weeks to get over it. Which does make you pretty scared of the next one...not the best to go into it expecting the worse...

And to make things even harder, I had quite an awefull and a little strange second meeting with my new oncologist. 

The first thing she said to me was: 'hmm...maybe I shouldn't tell you....hmm'

Woosh...I felt instantly numb again.

She: your tumour marker is extremely high!

I felt sick.

She didn't say anything more. 

I had to dig for it, started talking about people living with metastasis for quite a while just to make her give me something positive...something I could draw my attention to...she did however tell me that if I didn't tolerate the chemo there was still the possibility of just excepting the diagnosis and leave it....aaahhh...excuse me, but: NO! 

She then changed and went on talking about not forgetting that the biggest part of me is healthy and just a small part is sick and in case I would get sick again from the chemo I should try and take it on knowing that it is fighting for me...

That helped a little and sitting on the bus I felt strong and powerful and ready to pounce...

...but by nightfall I was small and weak and ready to freak out again...

I wrote one of my amazing breast care nurses from Australia and she wrote me the most comforting message back...

...she said not to focus on the number but on the tendency and on how I feel. And she knows women with a marker in the thousands who are functioning well!

Gosh her massage made me feel so much better!

Question is: why on earth does it seem so hard for German doctors to show something like sympathy or that they care???

What the heck is so hard about it?

Or was she actually testing me and trying to push me to fight more? That would be an anthroposophical thing to do, wouldn't it? Because I do actually like her and I do actually think she cares! She hugs me and pets you in that comforting 'we-are-going-to-make-it-and-we-are-going-to-fight-with-you' kind of way...

New

The last chemo hit me pretty hard a day and a half after it was administered.

I felt so sick within minutes...my whole body was aching. My bones, my skin, everything! I felt very feverish....just as you do when you are about to come down with the flu...

Thank god my mum arrived that night to look after the kids.

It's hard to feel that sick at the best of times. Especially with kids a round. But to feel like that from chemo, and even worse: to feel like that from chemo without any emotional support from the hospital: nothing short of a nightmare!

In Australia the whole hospital staff where really making sure you had quite some support. They always tried in a very nice way to get you to go to supports groups, which was so helpful! And not just that: They actually gave you the feeling they cared!

And there isn't a lot to it. All they did was checking in on you every time you had chemo. The oncologist saw you before every chemo to see how you had been handling the one before and the breast care nurse visited you during chemo...good old times...

......

I need to change. 

Change my life. 

Change my happiness. 

And change hospital!

So I went and saw my GP. And I told her that a hospital called Havelhöhe had been recommended to me by several people. She told me to definitely get in there if I could.

I called Havelhöhe and started crying on the phone! I couldn't help it...it just happened...

I think probably because it's been such an emotional roller coaster and I don't feel at all supported by the system but part of it because I was so grateful that someone actually answered the phone!

The lady wanted to get me an appointment 10 days later, but the tears made her give me one the same day! 

Thank you tears! You came at the right time!

So I went. 

And it was great.

The doctor listened. 

And understood this isn't just about chemo. 

This is about healing my body, mind and soul. 

......

4.

5 days ago I had my 4th chemo...

It went actually quite alright as it was the first time I didn't have to wait for it to arrive!

I even got to speak to the ward oncologist...not in private....but at least I saw him briefly...mainly to organise my next ct scan....which I had to organise! Because nothing runs smoothly in that hospital! And if you don't organise it yourself nothing is gonna be done!

I remember even my chemo would not have started unless I would have insisted! Back then my oncologist, who I had waited 5 hours for, had send me down to the place where they administer the chemo to ask 'if I should be there at 9 or 10 the next day' to start my treatment...

So I did.

The nurse asked who I was.

And asked what chemo.

And asked if I had signed the forms.

I told her my name.

I said I had no idea.

And I said no.

She said there was no way I could start chemo.

I could have left. Not ever coming back. Not ever finding out what went wrong. Probably not ever been contacted as to where I was because no one would have ever missed me.

I said I was not going to leave until it's sorted! Because ones you know the cancer is eating away your inside you just want to get started!

It's the chaotic oncologist...or maybe the system? I don't know...but it's just gotten too much to handle! 

3.

Third round of chemo...I was actually pretty excited and looking forward to it! 

Mainly because my back pain had been getting better after every chemo and with a little bit of luck it might be pretty much gone after this one! You can't believe how much it would mean to me to be pain free...soooo looking forward to it! 

I definitely understand a friend of mine who has had chronic back pain/leg pain for years even more now. I can't believe how she is managing knowing she won't ever be without pain again...probably...unless they find a new treatment...fingers crossed they will!

Back to my chemo...so I was looking forward to it and got there at 11.

All the seats where taken so there was a waiting room chair for me...a little disappointing, but hey, I'm not that fuzzed and easily thrown off...

So I got comfortable on that really not comfortable chair getting my entertainment program happening (watching Big Bang...and don't tell me you don't like it! I think it's the funniest show ever!)

2 episodes later I was wondering if they might have forgotten about me...4 episodes later I was SURE they'd forgotten about me...but they hadn't...just the usual waiting for the actual chemo to arrive...from the hospital chemist! On the hospital grounds! Ordered the day before! 

When I finally started the chemo, my back had started aching quite a bit from sitting on that chair...so I ended up having to have chemo standing up! 

I'm so annoyed and disappointed! So disappointed in the system here! So I'm on a mission to maybe change hospitals/doctors offices...but that's a different story....