42.

Last chemo in Berlin. 

Leaving with a tear in my eye. 

But, 'the doctor and nurse are easily exchanged' my doc said. And I don't need to worry as everyone who chooses to work in oncology is going to be carring and nice. He was so right!

41.

Back to chemo this week. 

But feeling much better as I had more time to recover due to the canceled chemo last week. 

It didn't wipe me out as the last two. So I'm hoping for the best and that it'll stay this way. 

Maybe the last two were worse because I was mentally down and had to still recover from a root canal treatment as well. 

Whatever it was, I really hope I will tolerate it better from now on!

Today is day three after chemo and I feel ok. 

Actually I'm pretty impressed with myself as day one after chemo I went to Mila's summer festival at the school. And on day two after treatment I made it to Lilla's summer festival at pre-school! And even went to a Biergarten near by to meet friends for dinner last night! 

I lost my hair though!

I brushed it 30min before heading out to chemo and there was no stopping it. 

I knew it would happen, and I knew what to expect as it happened before. 

But it was still pretty confronting and I couldn't help but cry a little. 

Because I was running late I just chopped it off myself. Later we trimmed it to all one length. 

I look like a half plugged chicken. 

But learning from last time when I lost it, I'll keep it at 2-3cm for now as it is easier to pull out the loose ones every day for a week or so...by then there will be hardly anything left and I can shave off the last bit. 

Blood

I couldn't have chemo this week. 

My haemoglobin was too low. 

So I had a blood transfusion instead. 

It actually couldn't have come to a better time as the weather forecast is almost 40 degrees and that would be hard to survive feeling knocked down from chemo side effects. 

40.

I've turned down the drip with the anti nausea medication this time. It still knocked me out but not as bad as last time. Next time I'll turn it even slower. 

Side effects where pretty much like the one before. I can definitely tell it's a much stronger chemo. But this time I wasn't in such a pain after. 

It can only get better. 

39.

The first time on the new drug. 

I think it's called Taxol, but I'm not sure. 

I think I'll lose my hair this time, but I'm not sure. 

I think I'll have to be on it for 2-3 months, but I'm not sure. 

I do know for sure that this chemo is messing around with me much more as it is much stronger. 

I'm getting more medication to help with the side effects but still can feel the difference. 

The day off chemo I was already zoomed out receiving it (memo to myself: next week try and turn the drop down much slower!). 

The day after chemo I was in such pain! Apparently it's a good sign and means the metastasis is getting eaten up. 

Two days later my whole body ached like when you have the flu. 

Three days later the nausea kicked in. And stayed. 

Until it was time to go in again. For #2. 

Fingers crossed I feel better after the next one!

38.

#38

I had no idea, but this was the last time I had Navelbine. 

The chemo that lasted a year. 

But now it's not doing its job anymore. 

The last ct scan showed its travelled into my liver as well despite me being on chemo. 

So it's time to change the drug and try something new. Something stronger. 

19 cycles of Navelbine ✔️

37.

In and out I went today...

It's gotten to such a routine. 

36.

I'm in such a foul mood today. Foul and sad and angry and bad. Oh and grumpy. How could I forget grumpy...

I think it's mainly due to the fact that I've been putting on weight even though I'm trying to lose it! 

It's the cortisone. I know. But that doesn't make it any better or easier. 

35.

Chemo #35. 

In I went. 

Out I got. 

Easy. Quick. 

But I'm worried. I'm actually freaking out. 

I started having numb and tingling fingers, and sometimes toes. It started just before Easter. I thought it was a side effect from chemo. 

By now my pinky and ring finger on my left hand are pretty much tingly/numb 24/7. And 2 days ago I realised I haven't got a lot of strength in my left hand. Not as much as in my right. 

I can't open lilla's skirt buckle with my left. Or at least it feels strangely weak. 

It was ok as long as I thought these are just side effects. 

But today I was told they might not be. There could be more metastasis growing in my neck/upper spine. 

But what I'm really freaked out about is that I worry it is ALS!

My dad passed away on ALS almost 8 years ago. It went really quick. 

He was diagnosed in May, by August he was on a breathing machine unable to move more than his head and in October he let the doctors turn off the life support. 

What if I have develop ALS? On top of the cancer. 

I can hardly breath. 

That would be the worst. 

34.

This is not only chemo #34, it is also 1 year of chemo! 

Yes, yesterday, on fools April a year ago, I was diagnosed!

A year ago I was sure I wouldn't make it another year...even though my doctor back then told me there is still a lot they can do and try to keep it at bay. 

But it took me weeks to believe him. To even just listen to what he was saying. I just didnt hear it...couldn't hear it...

Now I got used to it. 

There is easier times and not so good days, as to be expected...but it's definitely amazing how much a human being can take. And I mean there are so many people who have it much, much worse than me...

33.

Chemo 33...

Pretty straight forward today. 

Except that from all the excess fat/water retention from being on cortisone, the nurse had trouble finding my port. 

But she is a good nurse!

She found it. 

She marked it. 

She got the needle in first go!

Phew!

I did end up with quite a bruise though...but nothing to worry about. 

And I did use the time sitting at chemo to knit! 

I've been getting back into the knitting lately. It's such a relaxing thing to do. And so rewarding! 

I do struggle sometimes with my cramping fingers though. But it doesn't seem to be as bad as it is crocheting. 

The cramping is another side effect I just started having. 

I'm not sure from which of my medications...

Morphium?

Cortisone?

Chemo?

32.

I was dropped off at chemo by Suriya today. 

What more do I need? 

Chemo 32 ✔️

Getting stronger every day ✔️

31.

Suriya is visiting a friend in Prag/Pilzen this week. 

So I've been ticking off appointments and things I needed to organise. 

And today I went to chemo. 

Just another thing to tick off. 

I can't believe how strong I've gotten. 

Even over the last couple of days. 

No more shaky hands. No more blurry view. I even managed to visit a friend on the third floor and I wasn't even out of breath getting up there! I didn't even need any time to recover! Sure I went up slowly, but still! Crazy! 

So today's chemo went quick and easy. 

In my favourite chair. 

What more do I need? 

30.

Chemo 30.

Sounds big. 

Sounds like it needs a big tick. 

Sounds like it deserves a big ✔️

And on another note: I got this amazing surprise! A parcel just for me! All the way from Oz!

Aren't those unexpected gifts the best?! 

I felt so pampered and special and thought of and happy! 

Thank you again my dear friend Peta! 💖

29.

I walked to chemo today! 

All by myself! 

On this beautiful sunny day!

With this gorgeous spectacular view from my chemo chair!

I'm pretty exhausted, my hands are shaking, my eyes aren't focusing but I am happy!

So good to get stronger again.

So good to get independent again. 

All thanks to the cortisone. 

After two weeks off being on 8mg a day the Cushing-syndrome kicked in. 

All 'puffed-up-pan-cake-face' is my middle name now. But who cares? I can eat. I am not vomiting. That's all that matters.

Another great thing: my mum and brother and his girlfriend took the girls for a week during school holidays. 

They had a ball! And we had a week off!

It was great to have a quiet week to gain even more strength. 

Even though I kind of overdone it a bit when I went grocery shopping to the organic shop. I was stranded on their lounge for 30min before I was fit enough for the way home. 

But I made it. And it felt great!

And I even managed to bake scones on the day my mum dropped the kids back!

28.

Chemo 28. 

I'm getting stronger. I'm getting happier. 

I can even make it to the corner and back. Walking very slowly, getting into everyone's way. 

I did not make it to chemo yet. So still in the wheel chair. But that's ok. Maybe next week. 

I tend to over do it and then I have to pay the price later. 

I still need a two hour nap to recover from exhaustion after walking for about 400 meters. 

Just to be able to make it to the bathroom is great. 

I can have a shower sitting down in the bathtub. 

I can get to the fridge and I can fix myself a tea or some food. 

After I'm shaking. 

After I can't focus my eyes properly. 

After I am totally out of breath. 

After I'm so exhausted I need a couple of hours rest to recover to a state able to do it again. 

But that's ok too. 

One step at a time. 

Right now my radius is living room to kitchen or bathroom, maybe next week I can get to the kids room or even to the washing line to hang up the laundry. 

Exciting times ahead. That's for sure!

27.

I'm slowly getting better...still too weak to walk to chemo so I've been pushed here in my lovely wheel chair...hurray for wheel chairs and friends who push you! 

And an even bigger hurray for friends who push you to the shops and to have a nice little lunch just before chemo!

It feels so strange and incredibly good to be able to go/wheel to a shop!

It might sound ridiculous, but I have been looking forward to it for days and got really excited. 

Like a child going to a lolly shop. And all I got was laundry liquid, tissues and such things...oh and a new mascara! 

I haven't been putting any make up on for months...not plugged my eye brows...not even washed my hair for weeks in a row because I didn't make it to the bathroom...so getting a new mascara felt like such a pampering thing to do! 

Hitting rock bottom

I don't even know where to start...

First off all because the last couple of months have been so hard, second, it's been a while since it happened but I just couldn't face it writing about it...or maybe I was just still too weak as well...it's been hard tiping with very shaky hands and very weak watery eyes from exhaustion. 

After Christmas and New Years, I still didn't get any better...in fact I got even worse. I didn't think that was possible, but it was.

Early January I was down to 49kg. 

So weak. 

No muscles. 

Asleep all day. 

So nauseous. 

Couldn't eat. 

Couldn't drink. 

Constant vomiting. 

My oncologist was wheighing up if he needed to get me into a palliative hospital ward. 

He decided to try and IV feed my over night at home first. 

We started on a Thursday night. 

The nurse came to hook me up to the pump. 

It went through my port. 

The first night they just did a trial run with a quarter of the usual amount. 

It runs very slowly over a 15hour period. 

The first night was ok. 

The second night was not. 

It was a Friday night. 

After about two hours, I started getting back pain. 

That same pain in my muscle I was taking the morphin for. 

That cramping, excruciating, breath taking pain. 

It got worse. 

And worse. 

I started to turn all red. 

Burning from the inside. 

But no temperature. 

We called the emergency number. 

My doctor wasn't on call. 

We told the doctor on call the only reason for this could be the IV feeding. 

She declined. 

She told us to take more morphin. 

It didn't help. 

We called again. 

She told us to take more morphin. 

It didn't help. 

We called again. 

She still told us to take more morphin. 

It did not help. 

We did not call again! 

That night we thought I was dying. 

That night I wanted to die. 

I was ready to go, the pain was too much to handle, I was ready to be free. 

I took morphin every 30min. And didn't feel any of it. I took as much as I usually take in a week. Nothing!

When the nurse came in the morning to unhook me from the feeding pump, she was pretty concerned. 

An hour later the morphin started to kick in. 

I was in heaven. So high. Flying. Relieved. Light. Free. Singing (Happy from Pharrel Williams...I know. Funny. But I'm not kidding! That's what I was singing in my head) 

I was spaced out all day. 

That night the nurse said she reckons the food might have blocked the morphin as both substances go through the liver. That it was just plain too much for it to handle food and morphin at the same time. 

She started the pump but explained how to turn it off and how to flush my port. 

Two hours later it all started again. 

We emediatly stopped it. 

It took another couple of hours until the morphin started to work again. 

Since then I didn't have any more IV feeding. No one ever really found out what happened. 

All I know is, it was the worse night of my life. But I survived. 

My oncologist started me on cortisone after. The last resort to tackle my nausea. 

And it WORKS!

Finally! I can eat! I am not sick! I am not vomiting! And I am actually really hungry!

26.

Susi took me to chemo 26. 

We had a long talk to my oncologist. 

It's hard for everyone to understand that I have been bed ridden for months not due to the cancer, but due to the morphine side effects. 

No one understands why I am reacting so strong to them. 

I am reacting strong to everything. 

But why on earth is it so hard to find a medication against the constant nausea?

It sounds like such a simple problem. 

But apparently it's not. 

I have tried everything I think. Nothing helps. Constant vomiting. Nothing stays down. For a while I could eat potatoes with yoghurt dip. Not anymore. Or some corn flakes. But not anymore. 

It's so uncontrollable. It just shoots out of me. 

I'm better off not eating at all!

Christmas & New years

Christmas was nice, but exhausting. I am constantly getting worse. My mum was here which was great and it made it all the more special and Christmassy. But I am still getting weaker by the day. I can't keep any food down. Constant nausea. Constant vomiting. Is this ever going to end?

We had friends over on Christmas Day which was nice. Sadly I tried a mouthful of turkey and red cabbage and everything came out again. Usually that's it done then. But this time I had to vomit for hours...I took some medication which helps against the nausea, but it makes me so drowsy that I am pretty much knocked out for 24hours. Honestly! No kidding. My doctor gave it to me ones before at the surgery in a quick IV and I fainted! Scary.

However, I was in such bad state I had to take it. 

I wish it wouldn't knock me out like that. It's a constant trade-off. Nausea versus knocked out. 

Both not giving you any life quality. 

Then Susi came to visit over New Years.

Which is was great. 

I started crying when she arrived. 

So happy and emotional. 

It was great to have her. 

We talked. She looked after me. Sat next to me when I slept. And read to me. 

Still. I'm getting weaker. Skinnier. More depressed. 

Where is this going to end? And will it ever?

25.

Chemo 25....

I'm weak. 

Need to be pushed to chemo in my wheel chair. 

And I'm pretty emotional. 

But today I could talk to two nice chemo buddies. 

And I could cry as well. 

They understand. 

And they made me feel better. 

After, I left in a good mood. 

And hopefull, as usually I'm not too nauseous after chemo as I get some cortisone as well as a tablet to help with the nausea.