Round II - This time I will KILL IT!

[Bereta_Eder]

Pekka,
this is a "head talishman".
When there's an illness in some part of the body, people leave that small picture which depicts the body part in question, next to a holy icon. It's a way of praying. I leave it here to know there's a lot of people caring for you.

[pchang]

I could not find any clinical trials in Finland. Your doctors are probably not allowed to look beyond your own country. Search for a patient advocacy group for glioblastoma. Searching for "brain cancer patient advocacy" only turned up groups in English speaking countries (US, Australia, etc.). You may need to use Finnish.

[Pekka]

pchang, no, we can go abroad for treatments. At least that's what it says in the rules (meaning it's a theory, they'll deny your right for it but you might get lucky).

I'll look into the trials you've forwarded earlier today. I'm applying to one of them. Maybe the vaccine one.

So it was just confirmed that I have no help, I asked my wife to help me and she said she does not have the time because she has to go to work. ANd after that, there is no time to help me find trials. Sweet. "I have to work". Sure. And use Facebook.

[Pekka]

OK so I just contacted the one with vaccine... asking if they take foreigners, I meet all the other inclusion criteria so I hope it's not limited to US citizens...

[pchang]

Good luck.

[molly bloom]

So it was just confirmed that I have no help, I asked my wife to help me and she said she does not have the time because she has to go to work. ANd after that, there is no time to help me find trials. Sweet. "I have to work". Sure. And use Facebook.

I'm sorry for that Pekka- she doesn't sound like she's coping well. I would have been inclined to reply 'And I have to live, thanks very much' but then I always have been a sarcastic bastard.

I have never used Facebook. Want to marry me ?

[pchang]

I'm not sure you should take his signature seriously. Marriage sight unseen? R u having a dry spell?

[molly bloom]

I'm not sure you should take his signature seriously. Marriage sight unseen? R u having a dry spell?

No, I'm just 'avin a larf.

Still happily partnered 29 years and counting... 30 come November.

[Pekka]

molly bloom, no that's exactly it, difficulties with coping... I have to work harder understanding this from both POVs... she does have to carry on and so why do I get upset when I see her looking pass me? And when she is not, it's "putting your head in the sand..". I can't have it all ways myself!

Anyway, had a decent day... I've found rhythm of sorts... I've found that yoga in the morning helps a lot, then some indoor biking, we have this spinning bike... so listen to some music and get a sweat going on... shower... after that I feel completely normal. Morning time is difficult, I feel depressed, like REALLY depressed. As in desparation mode, but after these activities some energy is released inside and my head gets that hope mode again. And I get the fighting spirit, as in let's kick this cancer's ass! Then some medibles in the evening time to take the physical pain of radiation therapy away and relaxation purposes (and to help with sleep), I've found these things to be extremely helpful. I just stick with this and I'll be OK (for now).

pchang, so I got a hold of the guys with the vaccine research and they said me being "international" is definitely NOT a problem, as long as I get my insurance to clear it out for me. Now, like I've said earlier, in theory we have such policies, I just need bunch of signatures (obviously few of them will veto so it's another fight), but in theory there should be no other obstacles I'm REALLY happy about that. I was concerned that maybe the accept only US citizens for obvious reasons but that is not actually the case. They still, naturally, choose who they take in but they said they've had quite many people, non-Americans in the past for these studies. I'm genuinely excited about that I'd LOVE to roll into the vaccine program, or just about any other program. There were many others as well that were promising, I'll take placebo, I'll take 6 months more, I don't care, I just want the opportunity. Oh and it would make a nice trip as well

[pchang]

Good news. Now, we must conquer the bureaucrats.

[molly bloom]

molly bloom, no that's exactly it, difficulties with coping... I have to work harder understanding this from both POVs... she does have to carry on and so why do I get upset when I see her looking pass me? And when she is not, it's "putting your head in the sand..". I can't have it all ways myself!

Anyway, had a decent day...

Good to hear. Read about this (proton bombardment therapy) yesterday :

http://scienceblog.cancerresearchuk.org/2013/09/16/proton-therapy-is-coming-to-the-uk-but-what-does-it-mean-for-patients/

[Pekka]

molly bloom, hmm that's interesting... I've had stereotactic therapy, which is fairly high tech and focuses on very small areas of interest as to deliver maximum dosage and avoid healthy areas. But needless to say there's still side effects... but currently it's supposed to be one of the better options to undergo. I'm not disappointed about that.

My days vary a lot. Right now I'm having an excellent day, but it might change in an hour or two. Most ridiculous small things can trigger anger and anxiety and it takes a long time (or a beer) to get rid off. Morning times are difficult, I feel really depressed and paranoid about having multiple tumors even though there is no evidence of that.

Came back to see mushroom links, as I decided to grow my own maitake/shiitake etc. mushrooms. I've come across about PSK extract so many times it's time to act. I'm not supposed to take any extracts or naturopathic things during chemo and I'm afraid to go against the "advice" as they say it might affect chemo efficiency negatively, but taking those things in their original format (as in fish, not fish oil capsules) is totally OK and preferrable. So I'm not buying PSK extract, instread I need the mushrooms themselves. It will be interesting project, to grow something and see living things. Put some of that love into it

[Pekka]

And now I can't find them mushroom links.. must be my chemo brain or something.

I hope it's side effect but my hands have little shaking, just a bit... and i have general joint and muscle weakness to the point where it is uncomfortable. The latter is definitely radiation but I hope the former is as well. Or a result of the latter one. I can hold my hands steady but when they're realyl tired they shake just a bit. I'm keeping my eyes on it and paranoid

Oh, I also got the job I was looking for, had to turn it down. Pity. I was selected out of 80, to be a sort of cyber defense co-ordinator/arcitecht for a big ISP. Needless to say it would have been a big bump upwards in terms of pay, benefits and career (and interesting job!).

I can't be bothered right now though. I have to have satisfaction that when I get back, all that stuff is still waiting for me, i just need to forget all work stuff now and focus on relaxing and fighting and not stressing. I'm already very much low stress since I haven't been @ work and have given up lots of duties with my own business. I think I have been lying to myself saying that I enjoy my work. In a way I do, but clearly not as much as I thought. I love reading books, doing yoga much more. And spending time with my kids - they're full time work!! Of course I'll be going back once I'm cleared and the tumor is in remission. I might change career path altogether. No more computers for me. Thinkign about setting up some sort of cancer help store, which offers affordable prices (unlike these hippie stores, prices are UP UP and UP!) for everyone, like food products, books, help, information, support, a holistic approach, one stop shop for anyone in need - and NOT ripping them off! That would be cool. I think that is my duty and mission in life - to help others after I'm well enough to be of help. This I have already decided. Just forgetting about money and bills, focus on helping others, this will help me as well.

[molly bloom]

Just forgetting about money and bills, focus on helping others, this will help me as well.

Unfortunately as I found with my muich less serious illnesses, real life has a way of interrupting and hampering your recovery. Trying to deal with three bureaucracies (2 government, 1 local government) while risking blood poisoning and recovering from an enlarged liver and obstructive jaundice is about as much fun as it sounds.

You're the no.1 priority- and remind people of that, no matter how selfish they might think it sounds, it isn't- it's the plain truth that doing the utmost to recover and keep your strength up is the most important thing for you right now- not your job, the house, your wife or even (harsh as it sounds) your children. They have a life ahead of them, and brutally speaking, you might not, so grab hold of things with both hands, your teeth and even your feet, and dig in and persevere.

I like the sound of your (possible career change). The holistic approach- mind and body- sounds ideal. More importantly, you can speak from experience.

Just promise me- no getting into crystals or ayurvedic nonsense. You're too clever for that.


Good luck again, Pekka.

[Pekka]

molly bloom, oh noes! You're getting me wrong! I'm not slipping into alternative hippie world, trying to get better by refusing what science knows and what money grabbers and cheaters, the charlatans are trying to sell. Yes, I am too clever for that.