05 June 2007


Here's how to help me out

Last year when Gillian and her Team Thunderpants entered the Underwear Affair, a charity run for "cancers below the waist," I thought it was a cool idea and an interesting opportunity for people of all sorts to parade around in their skivvies. But it wasn't anything I gave much thought to, nor did I donate.

This year, of course, I have one hell of a cancer below the west. So Gillian's run this year is a lot more personal.

Since I found out I had cancer at the beginning of this year, many people have asked me if there's anything they could do. Here's something: donate this year to help raise money that might find a cure, or develop better treatments, or reduce how fucking much it hurts sometimes to have this disease.

And, just in case Gillian's boss does more Google searching (for, say, an editor in Vancouver), I'll avoid posting photos of her in her underwear as Darren did.

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I didn't want to say that in the fund raiser site, but how sad it is that now there are now all these vacines against the cancer causing HPV traits and most HPV infections will be prevented. Actually, cervical cancer will one day become a rare disease. Especially if men too get vaccinated. How sad and unfair, isn't it...
Get your kids vaccinated. I sure with there was a vaccine against colon cancer! :)
Yes, there isn't. It's just that colon is getting exposed to all these chemicals and everything the body is throwing out. I'll get my kids vaccinated, when I have some.

I was just thinking the other way around though. Recently someone famous died of cancer and while searching for the web to read about him, as I tend to surf the net just about anything really, I found that blog of a young woman. She had a very rare cancer and she went to the best doctors, but nobody diagnosed her and they all were saying that she was allright, that she had idiopathic disease and stuff. But she was in enormous pain.

She had the pain since eight years old. She said in her posts that she had a benign growth on her nerve, that later turned cancerous. Anyway, what was certain though is that when she was older she reached adulthood she started going to top doctors and all dismissed ensuring her that she was fine. In the end a low level doctor diagnosed her with cancer. The cancer was 8 * 6 * 6 cm. Huge. But it was very slow growing. It was growing on the nerve, causing extreme pain. I translated the cancer in english, because the blog was in non english language and if I got it right it was probably malignant schannoma. It grows slowly and rarely metastasizes.

I remember the same motive in other cancer testimonies I red in the past, about other people with rare cancers, usually slow growing cancers, but ultimately fatal (it was a cancer of the mouth minor salivary gland called Adenoid cystic carcinoma). That woman was still alive in 2005 or so, after being diagnosed around 1990. I don't know what happened since, I haven't looked for new information.

Doctors were consistently refusing to diagnose them, until a low level doctor finally diagnosed them. I searched the net and found that doctors' primary concern is not get sued, so if a rare disease comes along, they refuse to diagnose it.

Also, they refuse to prescribe novelle drugs for the same reason of the fear of lawsuits. If something goes wrong they'll have to pay a lot, perhaps they will even lose their medical licence.

What happened to that girl? She lived for two years with no remission after treatment, then cancer came back. She ended up with 70-80 tumours in the lungs and also as part of the treatment her leg was ambutated.

She also got some novelle drugs that helped her and shrunk the tumours, after going through a lot of bureaucracy and she tried to get more, but she didn't say if she got more. She died some day later after her last post about the novelle drugs.

Many of these rare cancers, grow very slowly, but are very fatal.

So, Derek you are lucky receiving the novelle drugs really and having a common cancer, because you have some real chance to make it through and doctors actually help you instead of trying their best to get rid of you.

In the end of the day, if you really have a rare cancer that allows you to live 10-15 years perhaps with no treatment, maybe it's better not to have treatment at all? If you have treatment you may have 10 more or so? But with ambutated leg or disfigured face? Not sure what to say. Probably, most people would go for living more I guess? Not sure.

So, if you get disease I suppose, better be common or otherwise you are in big trouble.
I think the fear of malpractice lawsuits is somewhat lower here in Canada because large awards are less common. It is true that a lot of people are misdiagnosed early on, especially with rarer forms of cancer.

Everyone needs to be their own advocate for their health. I would not have received my diagnosis when I did if I hadn't brought it to my doctor's attention and been persistent in making sure I saw a specialist. It's true that I might have been able to go in a few months earlier if I had been more prone to worry, and maybe not had to have such drastic treatment in the end, but it may not have made much difference really -- my cancer has probably been in me for years and caused no symptoms until 2006.

But I am much younger than a regular colon cancer patient, and my cancer is behaving differently. No one is the average, so being your own advocate is one way to ensure that you get better treatment. I'm happy with that doctors here have done so far. I just hope it works.
Hi My name is jungho and I live in toronto. I am 34 years old and I also found out a cancer in this year. the cancer that I have is a rare cancer called a small intestine cancer. the stage was 2 and I was told that I was very lucky to found out eairlier such a rare cancer. well....however the 5 year survival rate is about 20% after the sucessful resection. this is the information that I found out from the internet. hm...
But I did not give up anything for my life. However the little hope that I have is that my cancer is misdiagnosed. hmmm...who knows? right?
you got married and have kids but I am single and I broke up with my girlfriend recently due to the cancer. hmm..but I am still positive about my life.

I heard that the inflammatory psedatumar can be misdiagnosed as a cancer even by expereinced pathlogists.

I think that you also better to check the pathlogy result again.

nothing is gonna be worse than now. hahahhahahhahhaha

god bless us.

p.s: I am a south korean guy. I hope you understand what I wrote down. cheers.
Remember, Jungho, that 20% survival rate after 5 years includes somebody, and that somebody has at least 1 in 5 chance of being you!