zondag 23 december 2018

How are you?

How are you? Such a simple question isn’t it. I get asked that question all the time. ‘So how are you?!’ And I’m struggling to answer it, because do I lie? or just tell the blunt truth and turn it into ’the cancer conversation’. I can’t deny It has had its advantages ( plane seat upgrade anyone? )Hehe.
Having cancer is not a subject you want to talk about everyday but how do you answer a simple question as 'how are you?' without mentioning it. 

I realize over the last years I’ve always shared a lot of my story and suddenly everything just stopped. The truth is I’ve tried many times but quite honestly I just don’t know where to start and my life feels like one long rollercoaster. The more time goes on the more happens and I just have no idea how to get it all across to you all. I figured it’s best to just write what is on my mind. Sit tight folks, you are in for an essay!

So i’m sat here on my suitcase in a very overcrowded train listening to ‘ intro- the xx’ on repeat and watching everyone’s life pass by. These are quite often moments I feel like I want to write as I have so many thoughts. I guess we never really know what goes on in other people’s lives. We just tend to make the assumption based on what we see, but there is so much more then meets the eye for so many people. If I can reflect that back to me, no one in this whole train would ever guess that i’m considered a ‘terminal cancer patient’ or being a girl that has been fighting for her life for over a year now. Let alone have cancer or chemo, because i’m not bald or look that ill. The guy sitting next to me could be going through the exact same or even worse. Someone’s appearance is easy to judge, we are all guilty of it some times, but I’ve been trying to be aware of it because we never really know how someone is feeling or whats going on in their lives. For me it's been quite nice as I can go through life without people knowing that i'm ill or struggling, but it also comes with a side where the assumption quite often is different. If you don’t look ill, tired or haven’t lost your hair, it can’t possibly be ‘that bad’. People assume the worse you look, the more ill you are which is understandable, but not always true. It is a mistake I often even make about myself, ‘I don’t look that ill, I can’t be so ill’ .
My appearance certainly did change, and it wasn’t always for the best, trust me. Even though I did not fully lose my hair, it was a very confronting, but really I feel mega lucky to have kept most of my hair and on top of that I finally through chemo I’ve got down to my ideal weight! hehe.

It’s been by far the most horrific year i’ve gone through, I'm  not going to sit here and tell you any different and be the ' all positive girl'  because quite honestly, I’m not. It’s really hard for me to admit it, because I’ve always thrived on being a very positive person, always looking at the bright side of life and always, always, seeing the light at the end of the tunnel. I guess most of the time I am still that girl, I actually would not change the cards I got dealt in life. I still believe I will beat this, no matter which hotshot doctor, or anyone else for that matters says I won’t. I still feel like there is always a solution, and it’s all about the mind. But yes chemo, not cancer, has certainly had a massive effect on my mind and perspective and so there are for sure days I’m down, I had enough and felt like I lost my spark for life. The one that always been so bright but whilst i’m writing this I also think, ‘ well yeah that’s true, but stop being negative because it could be worse so stop feeling sorry for yourself ’ and then another voice says ‘yeah it could certainly be worse but chemo and a death sentence aren’t really great either are they mrs optimistic?’  
I always have these silly conversations in my mind and if someone could follow them they would think i’m this mad girl! 
And I guess both voices are there these days and that’s okay, but I always want to make sure the first one, the one that I feel like it who is truly me, speaks a little louder. 

So chemo … what can I really say about chemo.. It’s SHIT, and that is me putting it way too nicely. I honestly could not have braced myself for it in any way. I’ve had a chemo regime called ‘ folforinox’ a really harsh regime consistent of several different chemo agents. I would get it every 2 weeks, and later on every three weeks. I would be in hospital for a day and then go home with a little pump that would slowly release more chemo over the next 48 hours. I am actually lost for words in trying to explain what it has been like or what it has felt like. It has tried to destroy me, all of me, physically, mentally, emotionally. It has hurt me, exhausted me, broke me in a million pieces, challenged me and it changed me.
It brought out a side of me I never even know I had, it tried to fade out my personality, it made me rather die then take one more step in life. I find it really hard to talk about this, because there is only a handful people who I let close enough to see me this way, and even to them I’ve always made it seem like I was kinda okay (not looking bald and very sick in between rounds has helped me to back that up) 
To everyone else Ive just always said ‘yeah its harsh but I'm battling through and i’m sure it all be okay’, Which I strongly believe and feel, but deep down there has been a lot more going on that I haven’t always wanted to admit to anyone or myself. I find it incredibly difficult to open up about how I truly have been feeling or put it to words how lonely and destroyed I have felt over the last year and even writing about it now, makes me feel very uneasy. I am also scared it will upset some of my friends who might not have had a clue on my true feelings over the last year. Some days I’ve experienced thoughts I never knew could ever appear to me. I guess this is something that is comes with the ‘cancer package’. 
I’ve never been able to express how It really felt to anyone except one person, my absolute rock who has picked up the pieces day in day out and without him I don’t know where I would have been. What makes me sad is that at times I’ve closed myself off completely from the world and lots of my friends simply because I had no clue on how to share or juggle life and everything that has been happening. On the whole I’ve got such  amazing people around me and my friends have been a massive focus for me.  They always look out for me and support me. It’s me who has struggled to share and I feel like, It’s time now to speak up and try and start sharing again. 

I want to give an honest look at my life as so many of you have asked me how Ive been feeling and also feel like it’s good to share that sometimes, it’s okay, to not be okay. No one can be positive all day every day, we all struggle at times. I think so many people look at social media and go through life thinking we all have to live up to all these crazy standards. Everyone has their own battles in life, we shouldn’t compare lives, or the issues we have, to others but I guess we are all guilty of it some days. 
What it really comes down to is how you take matters in your own hands, what your approach and outlook is on life and it’s up to us on to chose how we take on the problems we face, no matter how big or small. 

So in my case my ‘problem’ is cancer. And I never really felt like I had to make a conscious decision on how to deal with it, I feel that I’ve been lucky enough to most of the time see the positive side of things and it’s helped me fight it my own way. My life changed completely over the last year, and no matter how much I hate the whole chemo and cancer thing,it has also brought a lot of very healthy and good changes to my life. My days have been consisting of researching, researching, and yes, more researching. Well that’s a lie, I’ve had help of someone doing an incredible amount of research for me when I couldn’t. 
Something I’ve learned over the last year is that nutrition/foods is a very critical part of my strategy to fight cancer. Along with stress management(unfortunately I'm not very successful at that part yet ha).

It’s been one hell of a journey and it has been full of ups and downs, I have, we have, all, learned so much. One of the biggest things that I slowly have started to implement is juicing. It started off with 1 veg or fruit juice every day, maybe 2. One year down the line, and about a million hours of research later , i’m now daily drinking 2 to 4 liters of vegetable juice a day. Along with lots of water, green tea and consuming incredible amounts vegetables and fruit as well. I know this might sound absolutely ridiculous to many of you, it did to me as well when I started. It’s has definitely not been without a big struggle though considering I use to be a ‘tzaziki has cucumber in so that counts as a vegetable right?’ kinda girl. Makes me laugh when I think of that now. 
I will not bore you why I believe all the research is so important but if you do your own google search you will find that it’s vital for a cancer patient to do so (for instance research ‘ gerson therapy’ or chris wark, or Kris Carr to just name a few of the many examples) food and nutrition are no longer a way to just ‘eat’ for me, they have become medication alongside conventional treatment. I understand it might sound absurd to some and we are all entitled to our own opinion. The reason I mention this is, I’ve gone along and told some people what I’ve been doing, and had negative comments or people not understanding what I’m doing without the actual research on their part. 
I guess when all other treatment has pretty much failed you, doctors say they can’t help you anymore and top cancer hospitals in the world tells you ‘ you could be looking at 6 weeks to live’ you start doing your own research and you will do WHATEVER it takes to safe your life. And you know what, I feel very lucky, to now be over a year down the line from when that comment was made, and certainly not about to drop dead anytime soon. 

So, how am I? I guess I still don’t know how to answer that question. I would say ‘ I am okay’. Because I am. I’ve got days I feel on top of the world and convinced I’m going to make it but there are plenty of days that i’m down, and sad. Often I don’t really know particularly why but what I have noticed is certain topics seem to be recurrent over the last year or so. Confrontation with myself and jealousy. I guess anyone who has been ill or gone through something similar in life might be able to relate to this. I find it incredibly difficult to admit, but I am jealous and I do not like it. I’ve never been a jealous person, but I find myself being jealous of, well, healthy people.
  I guess I find myself sitting at a birthday or other social event and we talk about starting families, pregnancy, buying houses, holidays next summer, making travel plans, promotions at work, marriage etc. Just the simple but great things everyone kinda goes through (and to be clear I would not wish my friends anything else then all the happiness in the world!!) 
But I am sat there thinking, ‘ I wonder if this will be my last Chirstmas, would I ever adopt children because I most likely won’t be able to have my own anymore? Could I even adopt if there is a chance I might die and abandon my kids? Will I see my 30th birthday or even my next? ‘ 

It’s highly confronting when you are 27 and you cannot keep up. I am so tired all the time, and I hate admitting it or not being able to do the things that once seem normal. 
When you wake with pain, go to bed with pain, have to make vegetable juices every single day when you want to just go about your day, when you have to leave your friends housewarming party saying you’re tired, but you are actually so tired that as soon as they shut the door, you have to sit down in a cold stairwell of their building for 10 minutes because you don’t want them to see how sick you actually feel. When you do your food shopping and you need to sit down on the ‘elderly people’s bench’ next to two 80 year olds in the supermarket because your feet are so blistered you don’t know how to walk anymore and everyone kinda stares at you. When you pass out at airport security because your just so weak but was too stubborn to admit you were too ill to fly to go see your loved ones. When you cannot eat anything or speak for weeks because your mouth and insides are covered with ulcers and you are just so hungry, when walking to hospital makes you throw up because the thought of having to go in there makes you feel like you rather die than doing another round of chemotherapy. When the permanent IV in your arms gets confused with a bandage for a new tattoo and a room full of people looks at you in horror when you have to show them ‘no it’s not a tattoo, it’s an Iv for chemotherapy’. When you have to cancel on friends you haven’t seen for ages because you are screaming in pain from toxic chemo diarrhoea for 5 days straight and cannot sit anymore and embarrassed to tell people around you why you actually have to cancel on them (I mean who wants to know about that lol). Being just too damn tired to get out of bed, being scared you might make your cancer worse every time you eat chocolate to cheer yourself up. Or getting anxious boarding an overcrowded train like today, thinking how will I be able to ask the girl who is very busy on her phone to give her spot up on the  ‘less mobile seats’ to me, without just looking like a lazy bitch?! 
I know that all sounds quite intense, but it is my reality. I don’t often even realise my mind has gone to these places and it doesn’t upset me all that much anymore because it kinda became normal, if that makes any sense? It has become part of my life. I just rather laugh about it or take the piss out of myself. It just works a lot better for me to deal with things that way. 
I often find my mind switching between scenarios with a lot of ease. I imagine myself all old and wrinkly telling my 3 grand children about the time nanny was sick a long long time ago, but how great life has been for me. Or, I wonder what songs to play at my funeral and what people would say or who would be there and if I could see them. 
It’s weird how our mind can play tricks on us like that.

What would you do? If you only knew you did not have that much more time to live? 
Think about it carefully. Because really, when do you actually know for sure, you will die? Most likely when it’s too late. No one really knows when they will die, not even when you get told a certain life expectancy. You and me aren’t really that different. I could get hit by a bus tomorrow, you could get hit by a bus tomorrow, I could die of cancer tomorrow, you could die of cancer tomorrow or next year, I could die of cancer next year or tomorrow. We never know when until it’s too late to change what you made of life and so we don’t tend to live our lives likes its the last day we live, do we?  No, we carry on with what we know and actually quite often that is exactly what you would do even if you knew you were going to die. Getting a death sentence doesn’t necessarily changes everything, because (medical) miracles happen, and accidents happen too. I’m not quite sure what I’m trying to say here really but I guess people ask me often ‘ don’t you want to travel the world again,or is this the life you want to live if you know you are going to die?’
I guess I could ask you the same question, are you living like it’s your last day? 
I have had a amazing life so far and seen so much of the world and I don’t try and live my life as if I will die tomorrow. It’s quite the opposite. I try and live my life as if I have a long future, I make plans, I dream and I fantasize. It’s the little moments in life that do not feel little anymore at all, they feel big and important and often even like the most special I’ve ever experienced. Moments that made me laugh and cry at the same time, with pure love, happiness and true connection. As long as I don’t have any regrets & I have been happy, I feel like I have had a good life. Of course I do feel the threat, I try and remind myself daily,  be a good person, be kind, don’t judge, be open minded, love, forgive and laugh as much as you can, if you can. Don’t be afraid and seize opportunities you want to take. All this is easier said then done for sure but all we can do is try. Not taking life too serious is actually a massive thing in my opinion but still doesn’t always comes natural to me.

So, fast forward a year and a bit, I’ve stopped chemotherapy a few weeks ago because quite honestly I could not take it anymore. After 18 rounds I could not bring myself to go through it again and I also feel It’s time for a new approach. It’s been a year of chemo,the cancer is still there and they still do not know if I will live or die, and there is no known other treatment option available except clinical trials. I’m still stable against all odds, my tumors sometimes grown a bit and sometimes shrunk a bit. They don’t know why I am still alive and why I was able to sustain this type of chemo for so long, but for both I personally would say its because of my diet and mind, more then it was chemo. This is also the reason I’ve decided to trust my own instincts and follow this new path with regards to treatment. I’ve started an immunotherapy clinical trial phase 1 and it’s scary as hell, there isn’t even a name for this drug yet. But they have had people that were given up respond to it, or even going in to full remission and that gives me hope. I feel we are nowhere in life without a little hope and so I have to take a leap of faith. 

Am I facing challenges in life? Obviously yes. But who isn’t. I can truly say this has been the most difficult year of my life. But is that necessarily a bad thing? Would I ever change it?
At the end of the day, I’m still here, sat on a suitcase in a crowded train, living life just like anyone else. Today I’ve been surrounded by people I love most in this world. I could of been dead, or bed bound, or just in any position where this would not have been a possibility. 
I’m not claiming to be misses grateful here because I am like most people: slightly annoyed with the loud eating guy next to me, the screaming baby further down the train, and the smell of sweat is making me a little sick. Not to mention how irritating the girl with constant nervous feet tapping is. If anything im not particularly grateful for being on this train right now hehe.  But I do try to look at the bigger picture. Too often, I fail. A little less often, I see it, and I try to look for it every day.

So here I am, it’s almost Christmas again, last year I wondered if I would see another Christmas. I did, and quite honestly I believe It won’t be my last either. 
So how am I? I am okay! 

Merry Christmas Everyone, 

xxx Merel 

zondag 22 oktober 2017

short update

Dear all,

whilst im having a ' good' moment, and kinda clear minded I wanted to quickly write a post as many of you have so many questions and I sometimes get overwhelmed trying to explain.
Im doing ok, im struggling a lot, mentally and physically but fighting my way through it all.
Working on laptop seems easier then texting as its costing me loads of energy to type on there and keep up.
Surgery did not go as planned, they did open me up and wanting to do Hipec, but unfortunately the cancer has spread too far in my stomach, its pretty much everywhere. So they had to close me up and come up with a new plan. Which will be Chemo therapy. they leaving me te recover now and chemo will start in 2 weeks, after 2 months they will see if its working or not, and take it from there.

As you can imagine this has been the worst possible news and mentally i'm having a really tough time. Never tough enough for me to give up or stop fighting.
But at the moment im struggling with loads of things and my parents and friends are amazing to me. The support I feel is immense and I want to thank you all.
I'm going to need some time to recover from surgery and regain strength, so bare with me on replies and visitors as I seem to need to be by myself a bit as well.
As soon as I can, you will see more updates, from me, or family, and Ive got people helping me keep SOW going as well.

Love you all, onwards& upwards, as always.



vrijdag 22 september 2017

When cancer strikes twice

It's September. Fall is setting in and as i'm writing this, lounging away on my couch, I look at the tree in our garden and leaves are changing color. I wonder where I will be next year this time. None of us really know where we will be in a years time, do we? I'm not quite sure why that feels different for me, seeing everything can change, for anyone. But as for the last 2 weeks, I know that the upcoming year won't be one of my favourites, I guess. But then again who knows, things might not be as bad.

Most of you must know, when i'm writing on here, something is up. And unfortunately it is. My latest CT scans have shown reoccurrence of cancer, in my abdominal area, spread on the lining of my stomach ( peritoneum ) and on my bladder. For the sharp ones among us, you might remember that this was a possibility 2 years ago as well, and classified as ' the worst case scenario'. What back then, luckily wasn't the case, is the reality today. What this means is that you are basically classed as 'non curable'  and in time, cancer will take over the show. Sounds a little better then 'in time you will die' right? haha.

Now, technology comes to my savour, as i've been 'selected' as a candidate for a specific surgery called HIPEC ( ah the joys, i am 'selected' )  This ain't no walk in the park, this surgery is very extensive and will test me once again on all levels and additional Chemotherapy is expected as well.
- A short explanation: HIPEC is a surgery which generally last 11 to 14 hours, in which they open your stomach from upper chest to bladder, remove all visibly effected tissue caused by cancer, and then continue with flushing your system with a heated chemo fluid for a few hours, hoping it will destroy all remaining cancerous cells. You will wake up in intensive care and recovery will start from there. This procedure has good results, in some cases people are cured even. In most cases, it will hopefully at least buy me another 5, or sometimes even 10 years. And who knows where technology will be by then?! There are no guarantees and I realise all too well that the risks of this surgery are serious and life threatening. But so is cancer, and left untreated-dying soon-is whats coming,so fuck that, and bring on this surgery. You meant to lose quite some weight, saves me running every other day ha! So there's a bonus already. Oh and and eating loads of cake. Well, once you can eat again that is.

As you can see, i'm trying my hardest to remain positive and fight this with all i've got. And I'm a sucker for lame cancer jokes as they just make it all a little more lighthearted. I must say, it's surreal, a treatment like this was my worst nightmare when researching it 2 years ago, thinking, " how lucky am I to not having to have this surgery" to now hoping I was actually a candidate for it. Funny how things change. Nightmare becomes dream, well. sort off.  I am more emotional this time around then I maybe was last time. But I reckon that is because I know what's coming, I can brace myself a little more.

What bugs me a lot is, that I finally pushed on with SOW, the company I set up a while ago but have been struggling to push through for several reasons. I now made the decision to get moving and just do it. As life is short. I'm always on the move, may it be in my new van chasing dreams here in Europe #vanlife, as it's pretty amazing, or jetsetting off to a 'beachy' destination to chase waves. I've set up SOW to be an extension of me, and to do 'my part' in this world and to inspire other people to just stop overthinking everything and follow your dreams. I want to contribute and donate to cancer research, and I will. But now, i'm facing a new challenge, having to fight for my life and fighting to set up a company at the same time is kind off a tricky business. The whole collection meant to be online by January, but little did I know about what was to come. So, i've had to come up with a new plan. I will still work my hardest on presenting you all with some smaller items.  Think of jewellery, little bracelets, surf leggings, and some other items. As I can make these now, and from my hospital bed in time.

I want to prove that no matter what obstacles may come your way, in whatever it is your doing, you can overcome them. There is a solution to well, everything. If you are willing to jump a few hurdles and think outside the box. Not let life and it's shit scare you, even when you think there is no way out. Because there is. Over the last few years i've picked up on several things, and social media might make look things a lot more rosy then they are. It might have seen to some, ' she's just living this amazing beach and travel lifestyle. Always on the move. Not a care in the world and kicked ass surviving cancer, so of course she's now just living live and enjoying it all'  and yes, to some extend this is true and social media only enhances this. I am chasing my dreams, but don't be fooled. I face the same challenges in day to day life as others and feel insecure about the choices i've made, or things I do. What I look like or how am I gonna pay rent end of this month and so on. And it might not look like I have a care in the world, it might not look like other people have a care in the world and everyone is doing great. The point i'm trying to make is, even if you're having a hard time, and things are just, well, shit. The trick is to stand above it al, don't let it stop you or trying to look at the bigger picture.

Saying that, that is exactly what I will do. I will work my ass of to get better and get SOW successful, it may not where I wanted it to be this January, but it will be successful in time. That is what I believe, and need to believe, in order to actually be successful! I refuse, once again, to let anything stop me, and fuck, especially not cancer. I will get there, in time. And so will you, whatever it is you're doing.

Surgery will be soon-ish, 3 to 5 weeks from now. Until then, I'll be devoting my time to surf, friends, family, getting fitter and SOW, of course;)

When cancer gets you down, again...#yougetthefuckbackup #stillkickingcancersass #notallwhowanderarelost

Onwards and upwards, as always.

xo Merel.

ps. 'playing the cancer card'(-did she just say that? yep-) But could do with some more followers! lol
insta: @sow.studios 

woensdag 7 september 2016

Cancer has teached me, to be patient, to be happy, to fight, to appreciate, to accept, to love, to live but also that you cannot control life, there is no point in winding yourself up over things.  Pretty much everything happens for a reason, and there is no point in trying to change your own ‘route’ . 
Ever since this journey -yes I actually see me having cancer as a journey-  started, I’ve tried staying my strongest, being the most positive I can be. Because I think this is a big influence on my body’s health, and aside from that, cancer brought me so many positives in life also. But Lately, with all the recent things happening, I’ve noticed this change in me, I’ve noticed a built up in anger, and frustration. And yesterday has been the biggest confrontation with myself in a long time.  

As I got results of my most recent scans and bladder exams, unfortunately there was something found in the bladder again that they are not sure of what it is. It could be a number of things, one of them being the reoccurrence of cancer. Of course this is really scary. But this is not why I got so angry. It was about having to adjust and give up my plans again for this disease. It is out of my control and I will just have to accept and move forward in a new way for now. I know it seems silly thing to get angry about but it happend anyway. But I’ve decided that it’s time to stay true to my own hashtags! ;) #wontgetmydownthiseasy #stillkickingcancersass 

So my South African surf instructor course adventure/ volunteering will just have a wait a little longer for me. Soon enough I will hop on that airplane again and jet off to my sandy lifestyle next to the beach. I have a few really big dreams, some of you out there know about them, they involve risk and a lot of willpower and unfortunately for my friends, also involve spending a lot of time abroad. Two different friends, very close to me, said to me lately, maybe you need to make smaller dreams for now, maybe you need to set a smaller goal. And even though I understand this comment and I see the reasoning behind it, it infuriates me. 
Because  I refuse. I refuse to make my dreams smaller, I refuse to set myself lower standards because I’m ‘sick’. I refuse to be captivated by fear. Fear is never something I want to make my decisions on, ever. 

Yes, this ‘ problem’ I faced in Bali was horrible, and it happened twice. And I hate that I now discovered it might be something worse than we originally expected. But I do not regret a single moment staying in bali after that first time, and not acting upon that fear of it coming back, even though it did. Because if I had gone home, I would have missed all these really precious moments that will now stay with me forever. And even though I had to go through this immense amount of pain again, I got through it and if it had happened at home, I would have had to do the same. I hate that it hurts the people around me so much to see me go through the bad times. I wish they did not have to, I wish they could sometimes see it the way I do, so they don’t feel so scared or worried.  But don’t forget, I go through them too, it’s me that has to feel the crazy pain, it’s me that have to have all the needles get stuck in me, it’s me that have to deal with walking around a surf camp with a bladder catheter, it’s me that have to drink nasty meds every day, or find a way to handle the daily stomach cramps, feel the pain when I see a little baby knowing I might not able to ever have one again, and it’s me that has cancer. So, if I can deal with these and a million more nasty things, if I can handle having that uncertainty going abroad, than that’s my decision.

Most of my dreams involve that aspect of being abroad, and this is not me running away from home, this is not me trying to leave everything behind, and of course I miss all my family and friends. But this is me. What I want from life right now, I will not find here. I need the heat, the ‘ non western/non european’ mentality, a slower pace of life. I know some people disagree with this, and say you can find this too right here at home, but for me, for me!!, it isn't. I just don’t feel it as much here. So please, let me chase my dreams, let me go. I will always come back. Right now I need to be healthy, live outside as much as I can, and I need to have all those nice random chats with strangers, watch amazing sunsets, drive around bali middle of the night just to feel the wind in my hair, see little moroccan girls play in small winding moroccan streets, laugh at goats climbing trees, dance the night away underneath the stars while feeling that bass buzzing through your body, be outside all day, surf so many hours that I forget to eat or drink just because the waves are so perfect, talk for hours with local friends underneath the stars, have candlelight jam sessions with friends on a roofterras, sit in little asian cafe’s on rainy days, eating nasi goreng for the 7th time a week and still loving it, have that feeling of sand between your toes, killing time at strange airports with eating very overpriced chocolate, finding awesome small shops that sell the most amazing rings, getting food poisoning from that street-stall but the food was totally worth it ( don't worry, aside from nasi goreng, overpriced chocolate and dodgy street food, I do eat healthy. sometimes;) ) and the list goes on an on. I get that these are  ‘temporarily’ aspects of being abroad, and are aspects of traveling. But whilst i’m working on-and towards a more permanent lifestyle out there, I’d like to make the most of my life right now. Again, i’m not saying that staying at home or choosing something completely different is not right either! But this is the way I like to spend mine.  So I don’t care I work in a surf camp maybe not earning the most, or doing some shitty weird job just to earn some extra pennies. Because in the end, I don’t care what job I do, as long as I am happy.  And that is what this lifestyle does. Along with allowing me to focus on my dreams, whilst actually living part of the dream! 

So when I say I feel more angry and frustrated lately, I need to realise, you know what, actually you have so much to be grateful for, experienced so many amazing things already.  I'm truly blessed with the life I get to live. All of it, with cancer in it. So all I need, is to be a little patient. 

Desires, Hopes, dreams are different to everyone. If you are happy and content with where you are, great! But if you are not happy with where you are in life, then move. No one is stopping you but yourself. Don’t tell me it’s complicated, because it’s not, it's actually really simple. People just tend to see many obstacles on the road. But don’t judge me for choosing to try not to let them stop me. Because I never said it is not scary, it really is. But I refuse to let fear lead me in this life.

So friends, I guess I'll be sticking around NL a little longer this time. lets meet! 

#whencancergetsudownugetthefuckbackup . amen :)

dinsdag 2 juni 2015

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,


donderdag 2 april 2015

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!  



zaterdag 14 maart 2015

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. 


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.