Round II - This time I will KILL IT!

[Pekka]

Yeah, will definitely post pictures.. spent 3 hours building today, the sauna will be awesome! Yard work is a lot of work though...

It seems to me that I feel better by the day, and what is happening that I'm exercising more, and I'm definitely dropping out more, as in I'm less and less part of the "rat race" and what society expects of me. I did not know the hold it had on me. Now that I don't care anymore and in a sense have broken free to some extent, do what I want, think what I really want and follow up on that, not really thinkign what others MIGHT think (be it legal or illegal), having no boundaries or rules but "don't hurt others, look after your family" I can say that I'm happy now. Very different than before, but I do not regret. I'm thinkign other people might benefit from this as well. Stuck up on their boring lives. If you hate your jog, quit. Quit tomorrow I say! Don't even go there. If you do, make sure you steal something, some good stuff too.

That subtle strangle hold society has had on me surprised me. I'm not talking about market forces telling me what to want or what to feel like. This is much more powerful. Maybe it the propaganda starts in school. Maybe we need new schools. Or at least new curriculums with less "our country is best" kind of ****. More critical thinking, more freedom - more absolute freedom. More positive stuff, more hey, we have a short life, let's enjoy it. Work is not important. Life is. Life is not work nor work is life.

[Buster Crabbe's Uncle]

This sounds pretty "Breaking Bad". If your life gets THAT interesting, do keep us posted.

[Uncle Sparky]

Are you medically cleared to sauna? I know after my surgery, that was one of the forbidden pleasures. Of course you're Finnish, so probably have a natural need to steam.

[Pekka]

Are you medically cleared to sauna? I know after my surgery, that was one of the forbidden pleasures. Of course you're Finnish, so probably have a natural need to steam.

Sure.. No problem, in fact it helps some (no cure there), raising body temperature, gets my metabolism going on and relaxes physically and mentally. I'm used to do 100C saunas at least once a week. Right after surgery sauna is a not a good idea but from surgery I have healed and have no restrictions.

About Breaking Bad, it was my favourite show and I do have Heisenberg t-shirt but nothing like that Let's jsut say that societal norms have no meaning to me. I live in smaller groups (family, friends, people from my community, country comes last, it is there but hardly). That said, we have a mortgage and I cannot risk it so I probably won't do anything really stupid

[-Jrabbit]

Checking in before bed and these PekkaPosts have made my day.

I've just been through a cancer death -- the wife of a close friend (memorial this weekend), so a lot of this hits home for me. She was inspirational, and I see that same embrace of life with you, Pekka. Attitude means a lot and, given all that's transpired, yours is outstanding. I can't help but admire what I'm reading in this thread.

Hang in there, man. Thinking of you often.

[Pekka]

Thank you Jrabbit, I guess I try to live by the poker wisdom "chip and a chair".

Tomorrow I have a docs appointment but nothing significant should take place. MOstly Q&A opportunity I think. At least I hope so, MRIs will be taken in some months... I guess I'll receive my blood sample results but we're not expecting anything out of them, they've been consistently good.

Still, I'm nervous going there. I'll plan something nice for the evening to reward myself. Like a movie or good work out... something fun. Guinness is of course a go. I've been a bit stressed out as folks from my company have been sending me messages about stuff, nothing extreme but something they could just find out and do instead of hassling me with it.

It's Sunday, I'm with my kids, I'm definitely not at their disposal. I didn't answer and I'll keep doing so until the message gets through. Not my problem anymore. But they don't mean anything bad by it.... just a bit ignorant I guess. Last time I was contacted was... last Sunday. Again, I'm with my kids, on a sick leave.

Went to a church today with the family. Easter event... it was quite nice, last time was a long time ago (well our Wedding - not that logn time ago). ago)... Also, planning on taking a short motorcycle trip tomorrow (for liek 15 minutes). That'll be fun

[Pekka]

Friends, I want to say that please, even in the most dire situations, facing impossible odds, fighting is ALWAYS an option. There is always hope. There just is. It is these inner feelings that betray us. Giving up is also an option, but it's just not a good option. After all, how do we ever find out how the story ends unless we strive to read the last page? And until we get there, the story will go on, day by day. And we write every page ourselves, so the story will be what we make of it.

[molly bloom]

Friends, I want to say that please, even in the most dire situations, facing impossible odds, fighting is ALWAYS an option. There is always hope. There just is. It is these inner feelings that betray us. Giving up is also an option, but it's just not a good option. After all, how do we ever find out how the story ends unless we strive to read the last page? And until we get there, the story will go on, day by day. And we write every page ourselves, so the story will be what we make of it.

Pekka- can't remeber if you like chocolate. It may please you to know that you can get a Guinness chocolate bar- so you get a sugar high, a Guinness flavour hit and some anti-depressant all in one delicious bar...

http://www.amazon.co.uk/Guinness-Luxury-Milk-Chocolate-Caramel/dp/B007RBIU6G

Treat yourself. You deserve it.

[Pekka]

Umm, thanks, looks delicious but I'll try to avoid sugar at all cost Maybe I'll treat myself one night though, I will for sure.

Anyway, we're going for a new round of chemo, this time triple dosage. Now, side effects are almost guaranteed they say. I did not like the new doctor I saw. She did not answer my questions, in fact she _refused_ to answer many of them, gave me conflicting information as what other docs have said before etc etc. Did not look me in the eyes a single time, kept staring at her desk, it seemed she was more depressed than I was. She kept saying "we have the best case here", she was like a broken record. It was the most scary experience so far. I think she's a good doc, but such an introvert and a believer in what she does that it just made me scared. And it was obvious she had absolutely no faith in my case. None. And she refused to give me any susbscription for any kind of pain medication. I asked for it a few times.

I think it was a positive thing; now I know I need to change my team. They're jstu doing "standard protocol", not ready to listen to me or talk with me, in fact I asked who is the person/doctor I can forward my quesitons to (she was supposed to be the one), and she said "well, we don't do consultation, you can ask our nurses and they'll forward questiosn to doctors" and about clinical trials "Well, you can search yourself, they usually have contact information there and you can... like call them or write them". No **** I can call to a phone number, thanks for the HELP!

So positive thing was that I really now know we'll have to fight this by ourselves and forget these folks, they do their best but it just is not enough. The illusion is now gone and I will never trust them again.

edit: The weirdest thing is that I don't feel that bad yet, the only thing that depresses me are my doctors, who I can't talk to, call or even email. They have made it clear they are not at my disposal for questions. Kind of BS.

Then she quickly mentions I might lose my vision and hearing soon, so maybe get some eye drops (wtf?) and call to a hospital if any OTHER "side effects" occur that are not to be expected. Now I have lost of questions. Too bad she won't answer them. Then she wanted to see my ankles. It's like... what is this, do you want me to feel untrusting, and oh, "do NOT take vitamins". It's like she's trying to kill me faster than necessary. I'm trying to see if I can get abroad somehow, this isn't working at all. This is some juju with really toxic drugs.

[Pekka]

JUst talked to my mom more, she found a private clinic here and it did look pretty good (I checked it out as well).

It offers good service (or so they say) and the consultation prices were affordable. So next up, private clinic Friends, I'm not looking for them to cure me (obviously it does not yet exist), I'm looking for a doctor who treats me as a human, not a subject. Who answers questions and has true faith and hope in their own job and my case. That's it. If it costs me to have a medical team I have faith in, it will be worth it, regardless of the end result. I felt immediately better, after knowing this is the course I will be taking. I think this alone will add to the quantity and quality of my life, which is what i'm looking to do.

[Bereta_Eder]

Pekka, I can tell you from personal family experience that a good doctor (as opposed to a mediocre/indifferent one) can add years of life to a patient.
Wishing you the best

[Kidlicious]

That's great Pekka. Good decision.

[molly bloom]

I'm looking for a doctor who treats me as a human, not a subject. Who answers questions and has true faith and hope in their own job and my case. That's it.

I think that's the most important thing- there has to be trust, confidence and a good working relationship between the doctor/specialist and the patient. All the doctors and surgeons I saw answered my questions, without evasion, and the surgeon was quite forthright about any dangers and/or side effects. The nurses too were quite wonderful- as it said in 'Nurse Jackie'

Doctors diagnose, nurses heal.

Apologies to any doctors out there...

Do you have anything in Finland similar to district nurses who do home visits, Pekka ?

[notyoueither]

JUst talked to my mom more, she found a private clinic here and it did look pretty good (I checked it out as well).

It offers good service (or so they say) and the consultation prices were affordable. So next up, private clinic Friends, I'm not looking for them to cure me (obviously it does not yet exist), I'm looking for a doctor who treats me as a human, not a subject. Who answers questions and has true faith and hope in their own job and my case. That's it. If it costs me to have a medical team I have faith in, it will be worth it, regardless of the end result. I felt immediately better, after knowing this is the course I will be taking. I think this alone will add to the quantity and quality of my life, which is what i'm looking to do.

Good move

[Pekka]

molly bloom, I have no idea, haven't heard about that at least.

notyoueither, yes... in fact I feel very strongly about that right now. Considering this is Stage 4, and very possibly recurrent one which was then operated on, making the situation worse for me in terms of how much time I have on average (not that I believe in that number), I just cannot trust the people I've been dealing with. They made their decision according to the protocol, yes, but had I had an actual choice, I would have opted for a biopsy, and then we would know FOR SURE it was Gliblastoma Stage 4, meaning that we might have tried radiation first, to make it smaller, then operate it and try to get as much as possible, then chemo, then whatnot. That option of course is not possible now since these calls were made for me. And then suddenly everyone was "surprised". YEah, and that's the whole point of doing a biopsy in the first place, or so I have read from a layman's book. I even asked for it, "shouldn't we try biopsy?" and my oncologists, I mean my ex-oncologist told me "that makes no sense. If you had your head open, why not just remove the thing?". I guess we now know, too bad I was on the wrong side of that bargain.

So, I might have already passed my initial prognosis, and even if it wasn't recurrent, and hitting average would be like.. next Christmas, it's just too depressing. I'll beat that, I'll try my best to set a record. 12 months is not enough for me or my children. I'll make at least 24 months in good health and another 48 months in relative health and then I'll be in some sort of exciting trial, buying more time. I'll make it to my 40s, even if that means in not so good health (I'm 33 now). I will not die before I hit 40. I won't be just living, I'll also have a life. I'll then get back to my ex-doctors who did their best to not give me a chance or hope.