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!! :)