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