24.

I had chemo 24 at home again. 

Mila had her Christmas school party on this arvo and straight after her ballet concert. I just didn't wanna miss it. 

So I took 100mg Navelbine this time. 

I was so exhausted from the huge day I had and really didn't feel like it...but there is no escaping it. 

The day after, I was first ok, but at nighttime I had a big fever attack. First I had the shivers, then I was boiling. And vomiting all in between. 

It was scary. 

The kids didn't seem to be faced by it. 

I was obviously very sick there on the lounge and they just watched TV. 

I guess it's better that way. And who knows, deep down it probably has scared them too. 

It's sometimes so hard to know what they need. They seem so resilient and ok with the situation. Obviously they don't understand how life threatening it really is they just believe in the good outcome. 

Lilla came up to me and said: Mummy, you have to die because you've got cancer!

I said yes that's true, everybody has to die but not everybody dies of cancer. 

She replied her friends dad died of cancer! 

And that was it. I wanted to explain but she turned around and was fine with it. Just like that. 

This wasn't the first time she told me. And it was probably not the last time. 

I think it's much harder for Mila as she is 9 1/2 and is so much more mature and has a deeper understanding. 

It must be so hard for her to see me so sick. And at the moment it feels like every time we go one step forward we are going three steps back. 

But I think we are doing a good job in hiding the very ugly truth and still being open and honest about the situation. 

Luckily she never had to see me in a very bad stage of pain attack or depression. 

Not yet. 

Who knows what's still to come?

I'm trying to stay positive but it's hard. 

Weak, broken, hopeless

I'm so depressed at the moment. 

So down. 

So sad. 

So scared. 

Of dying and of leaving my children without a mother. 

This is really not like me. I'm usually very positive and have been taking this diagnosis as a chance. 

But even the mentally most positive and strongest person is gonna have a hard time sometimes. 

I'm struggling with the sense of it all and with what's right and wrong. 

And I'm struggling with my weak body. Thinking off it I'm sure that's the main reason I'm mentally broken right now. 

Feeling your body not cope and being weak like I was over 100 years old it's bound to make you feel broken to the core. 

I wanted to be independent again. 

Wanted to be myself again. 

And I get 'me' in the worse possible state: weak, broken and hopeless. 

So many tears. They just keep coming. I just try to hide them from the kids. I don't want my girls to be frightened. 

 

23.

This week I wasn't as lucky as last time. 

This week I was sitting next to a guy who listened to music on his phone. That wouldn't have been a problem obviously, but this guy turned it up so annoyingly loud that I was forced to listen too. And it was the worse type of music: Deutscher Schlager!

I felt tense and annoyed, not relaxed and positive like last time. 

Maybe that is the reason why this week has been pretty hard. 

I had quite some nausea and quite some sore muscles and flu like symptoms again. All side effects from chemo. 

And I have been pretty depressed. Which is not like me at all. But that I'll write about in another post. 

22.

Chemo number 22.

All ready for it. 

Had to be wheeled there again as I'm still too weak but that's ok. 

I felt great after the last chemo so I was looking forward to this one. 

And I met another lady who I could talk to while sitting there. That was a nice change. Talking to someone in the same situation or at least very similar situation was so good! 

It's not even that we talked about our disease or anything in particular, but just having someone opposite you who truly understands, someone who is part of the same club, it felt good! 

21.

New doctor, new chair, new chance. 

Old chemo. 

This time IV again. 

To make sure everything gets in. 

With the tablet you never really know how much does get absorbed. 

I was so weak. Have been from the past 3 weeks being so ill. 

And today I felt pretty down after having to vomit again. I didn't for a couple off days. 

So the doctor gave us a wheel chair. And my neighbour and friend pushed me over to the doctors surgery. 

I'm so glad I changed doctors. It's just around the corner now. About 500 metres. So easy. And still so far when you are ill and weak. 

It was a pleasure being able to go outside and breath in some fresh air.

Thank you Mr. Wheelchair!

Sick

It's hard to feel sick at the best off times. 

But to feel this sick on top off chemo and cancer and everything is just incredibly hard. 

I don't think I've ever been that sick. 

Bed bound for over 6 weeks! 

Totally out off reach for the girls. 

Just not involved in anything at all. 

Just sick, weak, down, hopeless. 

Hopeless that it'll ever be better again. 

And all because off an over reaction/allergic reaction to oxycodon. A morphin type pain relief I was supposed to take for my back pain...

The back pain which came back and seems to be staying. 

That is already freaking me out but it doesn't seem to face any of the doctors!

So after vomiting my guts out for 10 days my oncologist hospitalised me for a week. 

It was good to have some space to just be able to be sick without always trying to NOT make it look like I'm dying in front off the kids. And it has been good being looked after by doctors and nurses for a while. 

And the best thing was finding the reason for the vomits: not a tummy bug, but an reaction to my med's!

19.+20.

Chemo 19. and 20. I had at home. 

On the lounge. 

19. was easy. I was by myself. Kids at the grandparents place. I had a quiet weekend. Met friends for warm tea and warm waffles with melting ice creme. Yum!

Then I went to see a specialist for my back pain. To get some medication that helps me properly. Before the pain turns chronic. 

I started the new med's on Monday night. 

Got sick on Tuesday. 

Thought it was a tummy bug. 

Was sick all week. 

20. wasn't that easy. Feeling sick from a bug and having to take chemo on top: not easy indeed. 

Got even sicker. 

Met the new oncologist on Tuesday. 

Was ment to go back for blood tests on Wednesday. 

Couldn't move. 

The oncologist came to my place on Thursday morning to take my blood. 

By Thursday night I was feeling so bad he called an ambulance to drive me to the hospital. 

I spend a week there. 

I had an overreaction to the med's I was given for the pain. 

So they changed the pain relief. 

I'm a little better. But still have to vomit if I don't take my anti-nausea drops...and sometimes just because...

18.

Susi is here. 

She came so we could go to a concert. Jan Delay. Just down the road. And after I'll take my chemo tablet. 

Annika came to babysit and off we went.  

It was great. It was fun. 

And hanging out at home after, with my two friends, made taking chemo like taking any vitamins...easy. secondary. 

17.

This chemo is kinda special. 

It's the first one I'll take at home. 

As a tablet. 

One gulp and done!

Easy as that...

But I'm still a little nervous. 

A friend came staying with me this weekend so I wouldn't be alone. It is a little strange...a little frightening not knowing if I will tolerate it as usual or maybe better or worse. So it's good not to be alone with the kids. 

I started having back pain again. 

Last week. 

The week off. 

I hope this chemo is gonna put an end to it. 

16.

Chemo 16 went very quick and unspectacular...

In. 

Out. 

Home. 

Relaxing. 

Before the storm. Before the girls are home. 

It's just me for the next 6 weeks. 

So today the girls are aloud TV until bedtime and freezer meals for dinner...

Maybe for the whole weekend if I don't feel well actually. 

And next week I can get organised. 

I'm looking forward to it. Finding my own routine. Quiet. 

15.

The 8th cycle of chemo...chemo 15 and 16...

And not ready!

Why is it, that after the 6th cycle I felt so good? So good that I actually felt normal and strong. So good that I managed to forget about the cancer and just enjoy Majorca. 

And after the 7th I felt so weak and tired and nauseous. 

So nauseous that even the week off did not give me enough time to recover. 

If only I could pin down the reason for me feeling so down some chemos, and pretty fine others. I wish I knew why! I could control it a little better! I could enjoy life a little better! And I could organise my days a little better!

I really don't wanna do chemo today! Just don't! But there is no escape. 

Even Mila being home alone with the flu doesn't get me out off it...she is so independent...so grown up...

So here I am...

getting hocked up with the IV...

finding an empty chair...

wanting to relax...

called Mila to see if she was fine...

which sparked one other patients interests as in where I was from as my English was better than the average English you learn at school...

so the talking began...

went from how beautiful Australia is, to love at first sight...

I don't know how it ended up there, but it was funny and entertaining...

14.

Number 14 came around quickly. 

To quickly for my liking. 

Usually I was ready to go again after a week, but this time was different. 

I felt so tired and exhausted and weak and nauseous. Not a good starting point to have another round of chemo. 

I wonder if it really was just from the weekend away. 

Can one weekend exhaust me so much?

So much that all I could do for the week after was stay on the lounge? Sleeping for hours every day? 

The fear is creeping up on me again. The fear that it might be like this every time from now on...maybe even getting worse each time. 

I'm sure there is things I can do to not feel so nauseous. Things to take on top if the Aloxi I've been given through the IV.

But the tiredness? 

13.

Back to reality. Back to chemo. 

After a great time in Majorca. 

I actually managed to forget. Forget the cancer, forget the chemo...

So I didn't mind going to chemo...I wouldn't have minded staying away for longer ether...but I was ready for the next chemo feeling strong and happy and relaxed from the holidays. 

So I was quite surprised I was actually pretty nauseous after. 

Maybe because straight after we went to a big family reunion weekend. 

It was lovely, but exhausting. 

So the week after was spend on the lounge resting and sleeping while the kids were at school. 

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. 

7.

I went in for my 7th chemo pretty relaxed knowing I had felt so good after the last two, though very exhausted and tired from the weekend before...

It had been my birthday on the Sunday and as I was feeling amazing I decided to invite all my new friends and celebrate.

• So I cleaned the house on Thursday and Friday. 

• I went shopping for the weekend and brunch celebration on Sunday. 

• My mum, brother and nephew arrived late Friday night. 

• My mum and me went to IKEA on Saturday morning exchanging some wrong slats for the bed we finally had bought the week before...and we got some other things as well...as you do at IKEA...

• We went shopping on the way home. 

• After lunch we all went to a swimming competition cheering on Mila. (She got first place in butterfly and 4th place in breast, freestyle and backstroke. So proud!)

• Ones back home we build up what we had bought from IKEA. 

• Just finished, my friend Annika arrived from Hamburg. 

On Sunday:

• We had breakfast all together and cake and presents. It was just lovely!

• Then cleaning up and getting ready for my guests to arrive for the brunch. 

• We had about 20 people coming over and it was great! But sooooo exhausting.

 

• I, as the host, was in a blur as you are when it's your party...greeting everyone, offering drinks and food, cleaning up plates and glasses, getting more food out, doing some dishes, trying to find more vases, and refereeing the kids in between. 

• After everyone had left late afternoon we took the kids to the playground to get some fresh air. 

• and went out for dinner after. 

So no wonder I was tired. I had totally overdone it! 

On Tuesday I had chemo and it took a little longer than usual so I had to go and get Lilla from Kita straight after. Not a minute to recover. 

And Wednesday, Thursday and Friday I crashed on the lounge after the school run in the morning sleeping for 4 hours each day! 

Today is Sunday and I can still feel it in every part of my body...but it's getting better. And I'm sure it was just the exhaustion and fatigue after all the action and excitement. Not side effects from chemo. But will see on Tuesday how I feel after the next one. 

For now I'm just so happy and relieved and thankfull that my awesomely amazing friend Susi is here! Good times ahead I'm sure!

6.

The last chemo was the first at Havelhöhe...and the most amazing thing happened: I had NO side effects! None at all! 

I was waiting for them day after day...not daring to hope they wouldn't come...but they actually didn't! How can that be? They are giving me the same chemo.

But most importantly, they are giving me lots of complementary therapies as well...

I'm on some homeopathic remedies and I'm on a misteltoe therapy. 

It is an antroposophical therapy which you have to inject yourself 3 times a week in your tummy...and I'm most certain that's the reason I feel so amazing! Apparently about 60% of cancer patients in Germany are on it and it's been used for ages...my grandmother was on it over 30 years ago treating her leukemia.

It's amazing and I can't believe I went from being sick, sore, feverish and not functioning for 10 days, to not feeling anything at all!

I do have to admit though injecting yourself is a huge struggle! 

I tried. And failed. Not just ones! 

It's not the actual injection it's just doing it to yourself is a big hurdle...I can't watch. And you have to watch if you do it yourself...just imagine where it might end up if you don't...eeeek

However, as I just can't manage, I get help doing it...and I haven't missed one yet!

So going into the 6th round was a walk in the park. 

The oncologist was so happy for me she hugged me and cheered. 

I did end up in isolation during chemo though as Mila was diagnosed with scarlet fever that very morning! 

And as we weren't sure if I might have cought it from here, we decided it's better for everyone's sake if I had chemo isolated from the other patients. 

It wasn't the worse trade I have to say. I dint just get a room to myself, I got a comfy bed on top...bliss

Dear friends,

Thank you for being there, for listening and understanding, for saying the right words at the right time, for encouraging me and lifting my spirits, for giving me strength and hope and believe in myself, for making sure that all I see and know is the fact that this is not going to kill me right now and for giving me back the ability to see the good in the world! I love you...

5.

The fifth round was the first round in Havelhöhe...

The two weeks before had been so hard and I had been so emotional and down and loosing the trust in the good outcome of my situation. My thoughts had been all about trying to organise the life of my girls after I would be gone, was writing letters to my kids and lists with important passwords etc for my best friend. 

And even though I still feel like these are things I want to have organised, I'm a different person right now...my fighting spirit is back thanks to my incredibly awesome friends!

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....