Another day, Another step

Hi all, 

I know it took me a while before posting again, but I was in no shape to write a long blogpost! haha.
But for a little while now, I am. And seeing lots of you asked me about it, I thought it was time to give you all an update again.

So, what can I say.. It has been a bit more then a month ago now since I had my 'big surgery' and if I'm really honest this month has been by far the worst month of my life. Never had I ever expected to go through such a tough time as I ended up doing.

On the 30th of april was the surgery which was the 3rd one in just about 3 weeks which made it pretty heavy anyway, but the previous 2 surgery's had gone quite alright but I already knew this one would be a lot heavier, but still I wasn't too worried.
Eventually this surgery was a bit bigger then the doctors intended it to be, They had planned to remove the tumor and part of the bladder with it. They ended up removing the tumor, almost half of my bladder, and when they opened me up they noticed that unfortunately the tumor already had too much involvement with my intestines so they had to remove part of that as well. Along with that they took out around 30 lymfe nodes which they thought could be metastasis. ( uitzaaiingen NL).
Also they placed 2 hollow tubes in my bladder, sticking out of my stomach/bladder on the outside, which were used to radiate me internally for 7 days.
So when I woke up, I had 2 big drain tubes coming from my stomach, 2 radiation tubes sticking out of my bladder, 3 drip infuses in my hands/arms, a bladder catheter and a epidural tube in my back as pain medication, along with a few big ass cuts in my stomach haha. So you can imagine how I felt when I woke up, surely I have had better days;)

Time in hospital I can't remember much of anymore because of the medication I was just lying there most of the time, being super drugged up and stoned. Not really the kind of stoned you want to be though. ;)
Even holding up my phone and replying to all of your messages was just too tiring, so my apologies!
Unfortunately out of all things that possibly could have gone wrong, ended up going wrong and ironically I of course do clearly recall all of those moments. seriously every day something else would come up, from a bowel obstruction which resulted in me throwing up around the clock and getting one of those horrible tubes forced down your nose and throat in to your stomach( as if I did not have enough tubes right?), to allergic reactions from the morphine/pain medication causing the most horrible muscles cramps and panic attacks of some sort. I won't bore you all with all the details but if I had to do it again, I seriously don't think I could.

Aside from all of that,  the days sort of just passed by as well. for 7 days I was not allowed to really move or get out of bed because of the bladder radiation. For those 7 days, they would come and get me and my bed;) 3 times a day to radiate me via the tubes in my stomach, even though this was not very nice it sort of broke up my days of laying there in bed as well. So in the morning they would come and get me and then at 12 and at 4 again, kinda gave me some sort of rhythm.  The last day of radiation finally was there and I was doing a bit better, and super relieved radiation was over and done with. Unfortunately ( yes, I know, seriously, more bad luck?!.. where as normally removing these tubes would not be big of a deal, with me it turned out in to this scene of a grey's anatomy episode, you know,  where doctors ran across halls and shout and everyone sort of panics. But by now i'm kinda used to the fact that I just always have to be a little different then other people, so oh well )
anyhow, as I was saying, they pulled the tubes out ( which is the weirdest feeling...) and by doing so they hit an artery of some sort and this caused a bleeding. It looked so scary, blood spraying out of 2 holes in your stomach ( yes, I told you, It was just like on tv ) and next thing I know is a room full of 20 doctors and getting hooked on all these wires and monitors. What happened was that because of the bleeding, one of the doctors had to stop it by pushing very, very hard on both of the holes and putting so much pressure on the operated area, it caused a lot, and I mean, a loooot of pain, which then resulted along with loss of blood, my body to go in to shock, loosing my conscious and a dangerously low blood pressure, which can result in well,your hart to stop, so, I get the room full of doctors. In the end they managed to get me conscious again and rushed me off for scans and almost another operation again. To be really honest, I kinda can laugh about the whole situation now because it was so absurd, but at the time it was really scary and it is something I will never forget.

After all of that, my body had to sort of deal with it and I was a bit weaker again, but nonetheless I was making some progress and about a week later I was finally discharged and allowed to go home. I was expecting to feel much better immediately but I did not really take in to account that I still had to take home that horrible bladder catheter and that my body obviously had been through a lot, so the first week at home was mainly mentally a bit hard on me, but at least I was home again!

So, I also have some good news, well, great news actually. I now know that all of the fighting was at least for a very good cause. about 2 weeks ago I went back to hear the results of the pathological? tests they did on all the removed tissue. This was basically telling us if they removed all the cancerous cells, and if the lymfe nodes had cancer cells in them too, which would mean chemotherapy.
But none of that was the case! Above everyone's expectations, they removed the tumor clean and all 30 lymfe nodes were clean too. So all this time they thought the cancer had spread quite far already, but as it now turns out, I did not! Which is a much much better prognosis for the future for me.

So I think this kind of puts an end to my story today, I'm doing well, I'm at home and walking a bit again, as well as getting out of the house and getting more and more like me old self again. It really is still a bit of a hectic journey, now more emotionally as well. Even though I had amazing news and the future starts to look a lot brighter to me now, strangely enough, now is the time that I feel frustrated at times, or sad and angry. I struggle at times to accept what has happened and want to do so much more but my body is just not having it. I know this is natural and it's all part of the process.

It's very cliché but I think the most important thing to remember is that life is so short, so damn short. It can be taken away from you in a split second, I can still clearly remember the moment they told me that they were scared this was it for me, and that it had spread on to the peritoneum, and now, today, i'm fine, and life is given back to me.I do know how that sounds but really it is just the most strange and almost  a surrealistic feeling. One of the things that has been very important these last few months is the support that I've had from everyone, and especially some of my closest friends. I would here like to take just a second to thank you, Mum, dad, Michelle, both Julia's! Alliki, Marlieke, Martijn, Iris,Hendrik, and my 'amsterdam family, maddy,sanne,lot,mart and the others' for being there for me. So many more of you have been there and I thank you all and would like to name you all, believe me ;) but these few people have played a very special part for me and I'm not sure how I would have coped without you.
Okay now i'm done being all openly emotional on here ;) The next few months i'm going to start focusing on getting my shit together again! School will start again in February, until then I want to get my strength and energy up again, recover, save up, see as much of all of you out there in person!! in time find my own place in Amsterdam again, so if anyone knows any nice accommodation around Amsterdam, give me a shout:) and I also have some plans to travel before school starts again! I think I will continue to write blogs on here every now and then, maybe even like a travel blog like I use to have!
So, i'll be off on sunny holidays sooner then later I think, If I have to lay down a lot, I might as well be doing it next to a pool or on a beach right?!

Thank you all so much for all your cards, flowers, gestures, messages and kind words, I hope I can get back to you all asap.

I'm Ok!! :)

take care,

Merel.

a little update

So, as I am sitting here on my couch recovering from my first surgery, I thought it would be appropriate to try and do an update. 

First of all, Thank you!! Thank you all for all the kind messages, notes, letters, flowers, phonecalls, presents, lovely words and so on! It has been very overwhelming but at the same time amazing to see how many people make an effort..

I was/ am still a bit uncertain about blogging about this, and I have noticed that last 2 weeks I just could not make myself write another blog. Even though I would have expected myself to not have any problem whatsoever with it. But all the positive feedback I have received gave me this little push in writing again right now, so, thanks everyone! 

So, after my last blog post a lot has happened again. It is as if my life has become this 'intercity train' that is sort of broken or so haha. It goes extremely fast the whole time, but in stead of racing by all these stations as it suppose to, it just stops at all of them and then carries on too fast, not giving you time to process what you have seen at your last stop. - Which in a regular train you would get time for ;) 

well, that might be a bit of a weird translation of my brain , but in all honesty, it has been, and still is very hectic. About two weeks ago I had more exams at the AVL, (  this is a specialized hospital for cancer patients) it was a long day, with lot's of different scans and tests.

I then had to wait about a week for all the results to come through, and they told me they would try and come up with a treatment plan at the same time. 

These results came back a week ago on Wednesday, and we had to come in and talk to a specialized nurse who is with me in this whole process. She told me that they could not see any 'seeding' metastasis on distant, this means it was not visible in my lungs or liver etc. but they did see 2 enlarged lymph nodes and as she described 'a big process' which concerned them. They think the tumor on top of my bladder is about 7 by 5 of 6 cm big, and then of course there is a part also gone through the wall of my bladder, so inside my bladder is tissue about 2 or 3 cm or so.  

She told me they wanted to do a so called laparascopic surgery and also take a bigger 'piece' of the tumor inside my bladder. This laprascopy surgery means they make a few holes in your stomach and then blow a lot of air in, and go in with a camera, so they can see everything on the inside of it. 

They wanted to do this to judge if my peritoneum ( buikvlies NL) showed any seeding of the cancer. 

2 scenario's were discussed with me, 

- If this would be the case, I could not be healed anymore, she said this was a bad prognosis and they would then switch to 'extending your life' and making you as comfortable as possible. They could offer me HIPEC, which is a very extensive and heavy technique of heating chemo in your stomach to kill as much cancer cells as possible.

- If it was not that case, so if it is not spread to my peritoneum they then said I would probably receive radiation therapy( bestraling NL) on the tumor and then surgically remove it.   

As you might understand this was very hard to hear and ever since this all started I have not struggled as much as I did last week. It is as if you get smacked in the face over and over every time you go and listen to test results. At first they did not know when this first surgery would be possible to do, and it could take a few weeks again, which seemed like a disaster for me. 

But as you could read in the beginning of this post, i'm already recovering from this surgery :) So luckily for me they called the next day that I was scheduled for that upcoming Monday ( so 3 days ago now) 

So I finally have some good news, they could NOT find any seeding in my peritoneum ! 

(I bet you were all waiting for me to say that ;) it's like i'm writing a thriller here haha. -  juussstt kidding.) 

But yes, it is such a relief, i'm actually to a point where I kind of almost struggle to belief if it's true or just scared that they will end up saying 'oh sorry, it actually is spread'. But it is of course still a very serious case, It is strange how you extend your boundaries along the way. What at first seemed like the worse case scenario, now seems like good news.. 'oh, so it is only cancer spread to the lymph nodes, god, what a relief! ' But I still remain positive, and feel like last week I really did 'finally' hit rock bottom, and now the only way is up. And this feels like the first step. 

So now I'm at home, upcoming Tuesday i'll have to come back to hear about the results of the biopt they took from my bladder. And everything after that will kind of depend on those results. They are still not sure what they are dealing with and they can only set up a proper treatment plan after they know what type of cells they are trying to kill. 

They still keep all options open, they even said it could all be still just a very out of control infection?!! But they do seem to think based on what they see, and know from experience, that it is nothing 'good'. but sti

- okay, well, I literally just got a phone call from the oncologist 5 min ago.  whilst typing this,. so forget the 'it might still be good' part, because it is not - 

okay uhm, so he called, i thought to check in with me, so I kept blabbing on about how I was doing haha, but he is not a man of many words and stopped me right in the middle to tell me he had more important things to discuss then my recovery haha. 

Unfortunately, but as we all sort of already knew, it is not 'good' and it is the aggressive urachus cancer cell type. And they want to start treatment asap. So next thursday I will be operated straight away again, this time to 'move 'my ovaries higher up in my stomach, because I still have a wish for children, and the radiation might damage the ovaries, so they will have to be moved. After that they will start treatment straight away because they want to prevent further spread/damage. 

So I guess this is good news, the fact that they will treat me quickly, but i'm still a bit shaken up. Weird how you already know what is going on,but still when a surgeon calls you up like that you are still a bit shocked. I now also feel nerves already for the upcoming surgery seeing I did not find this last one particularly pleasant ;) But I guess I will hear more about it Tuesday when i meet my gynecologist. It is already very lucky that they can even treat me like this, and that modern science gives me the opportunity to even do something like  'move your ovaries' out of the way a bit! 

And she sooner it all starts, the sooner it is over and done with right! 

I think I will stop blabbing on, on here now as well, because I think i'm just a bit nervous haha. 

Thanks again for the support, it still means so much to me!

Watch yourself people, here I come:) 

I say, Onwards & Upwards!  

Merel 

 

  

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