tiistai 10. toukokuuta 2016

The English Episode


Thats about it for my Swedish! :D Now, I decided to write an English post of its own of mostly the same subject: Nordic Cancer Survivor 2016 and the latest happenings, but as a now blog post that also has new content. I still have issues with my keyboard, I cant download the necessary keyboard layout modifications, so whilst its still easier to write in English, Im still missing apostrophes and such, so excuse me for my "flawed" English right now. Not that it would be perfect anyways.

So, a small recap about the Nordic Cancer Survivor 2016 meeting. In short: it was amazing! But too short, but that was partly due us Finns, we couldnt stay for the Ung Cancer festival that took place after our two official meeting days from Wednesday till Friday. Even though Sweden aint that far, though 2 planes or 1 plane + train ride is needed to get to Malmo specifically, due to my thyroid condition I did feel a little worn out with all the hectic days and all the new info, teambuilding, brainstorming and all. But still for the most part I felt as if "came home", you know the expression? You are with a group of different sort of people that they feel like your own people. They get shit, like in a deep shit kinda way. And theyre also fun!

What you need to know about Nordic Cancer Survivor meet in general: its originated from Finland from a some odd years back, and first it was just Finland and Sweden, but nowadays our ranks have grown and we include also Norway, Denmark and Iceland. As the name suggests, this is a meet with nordc countries working with young adult cancer patients (tho some kid involvement too, since some of the organizations include both minors and young adults), wanting to share experiences, come up with new ideas, work together, share goals and dreams. Last years meet in Denmark set the bar quite high, although I personally dont require that fancy hotels or such in order to take part in this kinda activity, of course I appreciate the heck out of it, but dont deem it compulsory. (coz we really had an awesome hotel: Clarion Hotel Malmo) I know it was been a some what of an worry with smaller countries organization wise how to "live up to the demands when its their turn", Finland being one of them. But were here to do good, not bask in a fancy hotel or costly activities. That being said, I thank Sweden for all the experiences they provided us!
I personally took a great liking to the Icelanders that came this year, social people, and this time we had more guys in general taking part on this meeting, cool! Next year its Icelands turn to host, and I so hope that Im on the team again, Im dying to visit Iceland and also get to see their system close up, such inspiring people and volunteers doing so much of the work! We are in a way very similar with Iceland, but IMHO theyre more active in a way that Finland should be too. Were still too scattered and "keeping to ourselves". Of course thats on our "wishlist" on what to change, bit by bit. Also, I joined Sylvas gang in one of their Instagram updaters! Im translating them also in English, so go ahead, follow us, you have no reason not to, right :) IG: sylva_ry1982
Lots of activities were also uploaded on my Snapchat (littlethings_7), yet I still have a whole lot of pics and videos on my phone that (still) havent sorted out. I did have an actual camera with me but since Im a terrible packer and packed in a hurry, I of course forgot the charger for it at home. But no worries, I have a 23mpx camera on my phone! All of the material though aint gonna come available to all, but Ill get em once Ive sorted it all. (read: I took a hella lot of pics and videos!)

Next week is gonna be my first time officially as an peer support person, were gonna visit Tays with another volunteer, so if youre a patient there next week 16.5. monday, or youre a loved one of someone there, if you wish us to come specifically visit you, tell the nurses and the message will go to our contact person. Or, you can also send me email (

Today was treatment day, if you recall it was postponed last time due to my new(ish) food allergy incident which ended up in going to the ER. It had nothing to do with Nivolumab although that was the first concern, but Ive had these episodes with fish, and now with asparagus, for so many times that I could write you a timed list of how everything goes down, every time.
Yesterday I had routine labs, though since nobody specifically told me NOT to take my thyroido medication before labs, it didnt occur to me in the morning mostly coz I was just so happy that I actually remembered to take it, Im terrible at remembering morning meds since I rarely have any. So, the results werent that on point due to this mistake but still, doctors get some sorta info about this too, and now it seems my thyroid is on overdrive instead of being laggy. Oh what fun... there really is no one right dosage, its all about finding the best. And for me finding the best is like finding a four leaf clover since nobody, not even me, has a clue most of the time what possible symptom is caused by what. So, Im tired and irritated, bloated, sweating, heart palpitations, greasy hair, the list is looooong. Some have been around for a long time, some shorter, not all caused by Nivo, some stronger due to it but try to comb it with a fine pick, nope, youd have to me a magician or something. Right now Im real tired of being the "pet project", even though my life sorta depends on it. Everybodys allowed to be totally worn sometimes, right.. needless to say, Im still very, very grateful to have received this med.

In the future Im gonna try to write an English summary, even a little one, but since Ive promised this before and then discontinued after awhile when the translation process starts to irritate me, I will promise to do my best with the wits end and free time that I have, if not on every post, then at least most. Lets start from there, shall we.

Its getting real late and Im feeling tired, so peace out for tonight!