12.

Going to chemo the day after my amazingly strength giving talk was a walk in the park. 

I didn't mind it at all! It was just one thing I did in order to be alive and be on my way. 

And I had my summer break coming up the week after. 10 days Majorca with my girls and my mum! Bliss! 

Plus I had finally manage to inject my misteltoe therapy all by myself! So proud!

One persons wise words

I've got this friend. Her name is Tamsin. I haven't known her for long, but boy do I love her. She is amazing!

Through her work she met this guy. From Bahrain. Kind of stranded in Germany. And he is an oncologist. 

She told him about me and my struggles with the German system and the German doctors. He offered to meet. 

And so we did. 

Isn't it amazing how one persons words can change your whole outlook? How one hour with someone can give you strength you thought long lost?

And I'm not talking any religious or follow-me-and-believe-me-and-you-will-be-saved-none sense (sorry if I have offended any religious or follow-me-and-believe-me-and-you-will-be-saved people)

I'm just talking the good old come-on-and-open-your-eyes-to-the-positive-things-talk. I mean we all need it ones in a while. The person who can bring us down to reality who can ground us and see what is really important. The one who can take our fears away. 

And that was just what he did!

One of the first things he said was, that I was undoubtably the healthiest person in the room. That we are all going to die but that everyone usually ignores that fact. But I am facing it. And it makes me real, and makes it possible to really see the important things and the real beauty in life. 

He said a whole lot of other things as well. We talked for two hours. But that's not important. 

What is important is the fact that since I've met him I'm so much happier and lighter! Yes I do sometimes have fear creeping up on me, no doubt about that. But I can handle it. 

And what is more important: since we talked, I don't consider myself dying! I consider myself very much living! And I'm going to use this opportunity live through at me. This opportunity to change and finally start looking after me and start to feel I'm worthy of being looked after. And important. And believe that I have the right to be happy. 

It's a big change and I'm taking it one step at a time!

11.

This chemo was kinda strange...not the chemo itself (even though I was nervous as I had quite some side effects again from the last one), but my oncologist!

She has always been a little odd. She is very vage and never gives you straight answers. You always analyse later what she probably ment by what she said...it's tiring, exhausting and doesn't help me very much. 

Usually I feel worse after I saw her. Not a good starting point...

But this Tuesday topped it all!

She had been not wanting to do a ct scan. In her opinion, my tumor marker is indication enough to just keep on going. 

I find that a little strange especially as she hadn't got a marker from before treatment. She has one from after the second cycle and one from after the fifth. 

And they haven't changed. 

So they don't tell her anything.

Plus the marker is a very unreliable source of information anyway. 

However, she had always told me if I would like one, we can do one. 

So today I told her. I had made up my mind. I would like a ct scan done. 

Her imideate reaction was: Don't expect a good result. 

Why not? Shouldn't we expect a good one as my pain has gone down so much?

You can expect what you like. I expect what I like! But at least you have 10 days in Majorca on holiday to get used to it. 

Er...but in my situation a 'same as before' result is already a good result, isn't it?!

Shrugging...

So there is a chance it might have gotten worse? What would happen then?

We would have to start radiation immediately! So no holiday in Majorca...it's up to you if you wanna risk that. 

If there is a chance it has gotten worse isn't that another reason for doing a scan? I don't care about 10 days in Majorca if that would give me years with my children! 

...and on it went...after me and Susi got out we just looked at each other and said: absolutely mad!...crazy!

I was in such rage I started crying. Who is she talking to be like that? What the heck is she thinking? She is dangerous, mean and mad!

The nurses figured something was wrong...they asked me...I told them...they understood, they comforted me, they said she is like that with every patient at one point, they said patients are leaving because of her, and they said she needs to be told. 

So they told her. Right there. Right then. 

She came over and apologiesed. She said everything she said happened out if love. I said I don't need that kind of love and asked her if she has ever thought about the patients feelings? And that it is pretty hard to stay positive anyway, but it is near impossible if the oncologist is as negative as her. It's draining and exhausting and I don't need that. 

She asked if I could forgive her, and asked if she could hug me...I said yes. 

*****

The next day I had my ct...and two days later got my results. 

She was very happy. Good results. The metastasis in the lungs stayed the same. But they are very small and make up a tiny percentage of the whole lung so can't possibly cause the cough I had or short breath. Phew!

And the metastasis in the spine are clearing and leaving behind very beautiful dense bone...yay!

And thank god Susi was there! It would have been twice as horrible, twice as exhausting and half as exciting without her that week!

Dark but glowing

This week was shit!

I don't know why, but the last chemo hit me hard.

Maybe it was the rather exhausting weekend before (we had dropped the kids at the grandparents place in Bavaria for a week of summer holiday fun), or maybe it's just gonna get worse again from now on chemo after chemo (that would be fatal, fingers crossed it was the exhaustion!).

Whatever it was, it hit me pretty hard...thankfully the kids where away, enjoying themselves. 

I felt like crap. Tired. Fatigued. Exhausted. Sore. Breathless. Old.

On top of that I had flu like symptoms again...including a temperature.

Now imagine...feeling like that, not able to do anything other all day than stay in bed or on the lounge half asleep waiting for it to get better...kinda thirsty, but too weak to get a drink...kinda hungry, but too sore to get some food...

You are bound to get depressed. 

This illness is depressing in itself. But as soon as you physically feel like shit, you mentally go down the drain! 

You start to 'feel' the illness. You start to imagine it's getting worse. You start to believe it's the end!

You really do! 

And what is even worse: No one sees it! No one can see how bad you actually do feel!

It's unfair and it annoys the hell out of me, but it's the ugly truth!

Everyone I meet says the same thing:

OMG! You look amazing! And so healthy!

Yes, thank you. It's the fucking chemo glow. Would you like to try? It's pretty awesome!

It annoys the hell out of me! 

And don't get me wrong. It's not my friends I'm annoyed with, it's the chemo!

I wanna feel as great as I look! Healthy and glowing and strong! 

But instead I feel old and weak....soooo weak! I can hardly manage to go to the shops to get a carton of milk these days!

Depressing....

But I feel much better now, having chucked it all out there! 

10.

Chemo number 10...

Had to come here by myself today...missing Susi...

At least the weather is beautiful and warm which allowed me to sit out in the meadow again.

And guess what I did?

I called Susi!

I had talked to my oncologist just before, so I wanted to update Susi and ask her opinion...

The oncologist took a new tumor marker last week. 

I didn't expect a big change as I haven't felt that different to the time she took one last. But I was pretty nervous. I was all short breathed and exhausted from the fear of the result. 

She didn't tell me the number, as it doesn't matter. It's all about the tendency. 

She didn't even specifically said what exactly the difference to the one before was. 

But as she is not wanting to do a ct, and she is not changing the treatment, it's got to be about the same as the last.  

She did say though, as this treatment seems to help with the pain and seems to keep it stable, she wants to continue on the same schedule. I was a little shocked but she said it'd be silly not to keep on going. Especially as she has just got the two tumor markers and none from before the treatment she can't say exactly what the tendency is yet. 

If it stays stable for a while she will be much more confident to do it less often. 

And it doesn't mean it'll be this schedule for the next 5 years...just for now...

I do think however, I'd like a ct. I think I'll ask her to have one done in 2 weeks...

If it's better, I'll be ecstatic!

If there is no change, that'll be good as well in my situation I guess!

And if it's worse, at least I know...right?

Or maybe I don't want to know...

9.

9 down, 3 to go. 

For now. 

All comes down to tumor markers and maybe a ct. 

I got a cough liquid and antibiotics for my annoying cough today...and fingers crossed it is 'just' a cough...feeling pretty much like a nutcase fearing every little ache has got something to do with 'C'. 

But my back pain is back a little bit too...not at all bad. I'm not taking any pain relief...not because I'm not trying to, just because it really isn't bad...it's more in the background creeping up on me some times...bringing back the fear as well... 

But my hope and positiv outlook are stronger! Just a little bit, but stronger! And I'm sure if I'm given a bit more time without bad news it's gonna be growing to be much stronger than the fear!

And in case my tumor markers and a ct will show I'll have to keep on going with chemo I'm ok with it. Don't mind it at all! I'm actually most chemo days looking forward to it. Not because of the chemo itself, but because of the beautiful and wonderful place that I can call 'my' hospital! 

It's like going to a retreat in a way. 

Today I even had chemo outside...there is this park bench in a meadow just outside the oncology building...and today we asked if I could sit out there in the sun. And they said sure you can, just stay in the shade most of the time! 

So for the biggest part of it I was outside enjoying the sun and the buzzing bees and fluttering butterflies...with Susi...

8.

Chemo number 8....time is flying...

And this time Susi is there with me! Much more fun obviously...

She was looking forward to come and see the new hospital and meet the nurses and my oncologist.

We had a good chat to her and she said she doesn't need a ct at the moment as she isn't in two minds about my treatment. She is very sure it's been working a treat as my pain is pretty much gone...she did say however, that if I ever feel like having a ct done we can do one anytime. 

We have been clarifying my plan a little as well. So we are going to finish the 6 cycles and after my mum is taking me and the girls on a 10 day holiday! Yay!

Ones back I'm probably going to go on a fortnightly schedule to keep going with the Navelbine chemo as it would be advisable to kick the cancer in the butt every other week or so...they where her words...

And I'll definitely gonna keep on going with the misteltoe therapy! For ever! So I should really get my shit together and try injecting it myself...eeeeeekk...at least I manage to watch the whole thing now. So there is a real chance I'm gonna be able to do it all myself someday...fingers crossed.