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!