When they tell you

Cancer, we probably all know someone somewhere dealing with this disease. Although it might still feel like it's not that relevant to our own lives. 

-But when they tell you, it is you, that has cancer. Life stops for a little while. 

As we were enjoying that first day of spring in the sun, the idea of writing this blog was created. First and foremost of all I would like to highlight as to why I am writing this. I told my friends how much I wished I could fine someone like me, who knows more about what i'm experiencing, and also how much I wished I could find more information about this rare type of cancer. And then we discussed the amount of people that have been so supportive already, but that it sometimes is hard to tell the story over and over. So then we thought, why would I not write it all down? maybe it can help someone else in the future, raise more attention to it, and maybe even find someone like myself. Also, with news like this, a lot of feelings and emotions are involved.  People like to check in on you, show you their support and ask a lot of questions. They are also very unsure if they should talk about it or not, or if its okay to share with others. 

So I would like to do this and just say it's not a big secret and it's okay to talk about it. But because I don't want this to be the center of all conversations around me ( yes, yes, I know I love to talk about myself normally, but really, sometimes even I get enough of it;) ) I decided to share it all on here, so it's out there and we can get on with whatever else is on our minds!

Aside from that I have always loved to write. And with an eye on what's to come I think this would be something I could hang on to, and write things down, as a way to process it all. I decided to write in English because a great big deal of my friends -oh how unfortunate, really, you should all try and learn this!- do not speak the wonderful language of us Dutch. 

So, 

Some of you are already aware, some of you may not be. So here I'll start my story and from now on share my feelings, thoughts and try and keep the ones interested up to date. 

So for a while now, I've had problems, one bladder infection after another, and popping antibiotics like they are candy. I had a feeling there might be something more to it. 

I went to go see my GP ( for like the 10th time in 6 months. I've seen the man so many times, 'oh it's her, again' ) and suggested maybe more exams would be helpful. 

I had an electrocardiogram ( ultrasound?) and aside from an irregularity around my uterus my kidneys etc seemed fine. So I went to see a gynecologist to get it checked and looked at. They told me one of my ovaries was very enlarged and wanted to examine further.   

So, on to more exams, MRI, Bloodwork, and after two weeks of waiting I was told it was all just fine, well, as far as the expertise of the gynecologist went, that was. 

Because it was not all fine at all. On the top of the dome of my bladder they had seen a mass of 6 by 5 cm, and as I was told by the gynecologist it was very rare and unknown. 

She also mentioned that a year earlier on, when I was admitted to that hospital for a kidney infection, it was already seen and reported by the radiologist who scanned me back then. 

I took a little while to sink in, and I still can't believe this happened.

As you might understand, first there was relief, I was still able to have children, and nothing was wrong. But then there was this anger, and still more insecurities. 

Because, what was this thing on my bladder? and why did they never told me it was there in the first place? How much bigger is it now then it was back then?! 

Next day I went to see the urologist that I had seen the year before when I was admitted. She admitted there had been a terrible mistake made and apologized. ( well..yes.., thanks. very helpful indeed ...  ) 

She also wanted to examine me further straight away. They looked in to my bladder with a camera ( not a very nice feeling, I can tell you that ;) ) and there it was, a nasty looking 'thing' inside my bladder. A tumor, and most likely cancer. She wanted to be honest and straight with me, that it did not look good at all, and she was almost certain it was cancer. A biopt was taken, and straight away more scans were scheduled to look for any metastases( if the cancer had spread anywhere else ) 

I don't think i've ever felt so scared as that exact moment. All those feelings people describe when you hear something like this, happened. It does feel like you're whole world falls apart,as if the ground underneath you're feet just crumbles away... seeing life suddenly in such a different perspective, so much fear and sadness.    

The next couple of days are a bit of a blur. I went to have more scans, and had to tell this story over and over to so many loving and caring people. Also one of the main reasons I decided to start writing this all down

After a few days test results came in and they are still very confusing. 

The good news was that the biopt they had taken seemed to have no cancer cells in it. But that little spark I felt got taken straight away by the urologist when she told us this was explainable because of the place she took it from ( the side of the tumor). She is still convinced this is cancer because of its behavior ( yes, tumors have behaviors haha) good tumors are solid, mine is not. good tumors don't 'eat' through other organs, mine does. ( it is already through the wall of my bladder )

Then some other good news, as far as they could see, there were no traces of the cancer on distance. ( so to other organs like my lungs or bones etc.) but then again, unfortunately one of my lymfe nodes around the tumor is very swollen and she informed us to be counting on it to be a metastasis. 

Also it appeared that the tumor might also be up against my intestines but again they were not sure. 

Another reason I have decided to start writing this, is to raise more attention to this type of cancer. Urachus Cancer. 

This is the type of cancer they think I have. And it is extremely rare and unknown. As far as I could research now this cancer represents 0,016% of all cancers...?! ( don't pin me on it if i'm wrong! I can hardly believe it myself, so ;) ) Unfortunately it is very aggressive and the 'general prognosis' is not very good. Very likely to return, and likely to spread quickly. But there are some survivor stories and I do very much like to consider myself one eventually. 

It is basically cancer of the remaining of the umbilical cord( navelstreng nl) normally this dissolves, but in some rare cases this stays ( lucky me..! I have always known I was special ;) ) and then, when you're even more special, this can become a cyst( which they probably seen last year) if this cyst stays to long, it can become malign and you develop cancer. Which usually either connects to the bladder or to your bellybutton.  There is not much research available because there are only so many cases available to study. So another reason why I would say, share this story, who knows what will come out of it. Any advice or information would be greatly appreciated!

So now what? 

I've been directed to a very promising,good and specialized hospital here in Amsterdam ( Antoni van Leeuwenhoek/ AVL ) where I am expected upcoming Thursday for more tests 

( PET scans, blood work etc) and hopefully I will know more afterwards. As far as the urologist had discussed with AVL they think they will surgically remove the tumor and all the tissue damaged and then perform a new type of chemo called HIPEC on me too. but of course nothing is certain yet I guess until they know more.  

Meanwhile i just have to wait it out. It does feel like my life sort of fell apart. As many of you know I had finally found my 'path'. After a lot of travelling and working abroad i had started a 4 year degree at AMFI ( Amsterdam fashion institute, international fashion&Design ) having a really nice student life here in Amsterdam and great boyfriend. Unfortunately that last 'bit' ended a little while ago and everyone knows getting over a heartbreak sucks! But now I also know that i'll have to give up school, at least for a while, and give up my house in Amsterdam too. All of these things are sad and sometimes hard to deal with. 

But none the less I try to feel positive! I am a strong believer that most things happen for a reason ( although i'm not sure why they are throwing so much shit at me in one go, but hey, I'll manage! )

and I know I just want to fight this horrible disease with everything I have got!

I feel positive and think I can only come out of this so much stronger. 

Not having rent to pay makes more money for fun stuff! Not having a boyfriend makes life at times a whole lot easier as well ;) and having cancer makes you see and appreciate things a lot clearer, it really does, and whatever the outcome will be, it will change me and my perspective on life forever.  

So there it is, the whole story so far.

I find it somehow very scary to start this blog and post this, but I also really want to do it.

I hope in the future I will be able to write stuff down and able to process it all. I also hope after I overcome all of this, I can raise more attention to this matter.

Thanks so much for all the amazing,supportive and lovely messages I have already received in this super short time. It really means so much to me! And it really helps me to know i'm not alone. So thank you all again. 

Have a nice Tuesday all. 

Merel