The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

#IStandWithLisa

In case you missed the ferfuffle in the land of cancer blogging and tweeting, allow me to fill you in. Ann also wrote about this and you can see her opinion over here as well.

Lisa Bonchek Adams has stage IV breast cancer and tweets a lot about her life with cancer. You can follow her @adamslisa on Twitter or her blog. She is living her life as best she can and talks about it on line through tweets and blog posts.

Then along came Emma, who we will call the Idiot for lack of a better term, who wrote for the Guardian and compared tweeting to funeral selfies - really? Hence the name. What she wrote was taken down by the Guardian after a day or two but you can read it here. (See things on the Internet never really go away).

The Idiot complains that Lisa tweets too much. Is that really possible? Some people have conversations and dialogues on Twitter so they might have a high volume of tweets. So what?

And the complaint that of over exposure on twitter becomes a funeral selfie? She is not dead so its not a funeral.

So anyway, the Idiot's column was posted and then many complaints were received and it was taken down because the Guardian said it did not meet their standards.

That was bad enough and then Mr Idiot (her husband) wrote for the New York Times comparing Lisa's fight to I'm not sure what. He did talk about his father's death from cancer in England a few years ago and medical costs but it was fairly pointless in my opinion.

When I first read these articles and the blog posts about them from others in cancer land, I wondered have these two journalism professionals (Mr. and Mrs. Idiot) ever bother to talk to Lisa directly? I do not think so. I could be wrong but their writings were not about Lisa but about her tweets. In professional journalism, isn't it appropriate to contact the subject of their writings? I mean again I could be wrong but in terms of verifying information and all that, isn't that correct?

So I stand with Lisa on this. And Mr and Mrs can go take a hike.

A Novel Idea

Let's ask the patients what they want. In the past, funders for the biotech world never thought that patient's opinions matter. I mean really, what possibly could the patient's opinions matter in funding start ups in biotech?

Now funders are asking patients about their opinions as well as on sales and marketing of a drug.

Think about it for a moment, the car industry spends millions upon millions on customer surveys. How else would they know that the number of cup holders is so important to minivan moms? Its an age old theory to ask the end users of a product what they think  - hence Amazon reviews. But it took a long time to get to biotech.

I have a bunch of opinions for on my medications as well:

• Stop making giant pills. Squish everything down into little bitty ones that are easier to swallow. But make them bright colored so you can find them if you drop them on the floor.
• No medications should have the side effect of 'may cause weight gain'. They should all suppress your appetite
• About those bubble packs where you have to press the pill through the foil? No, no, no, a thousand times no. They make my hands hurt. 
• And the stretchy foil impossible to break plastic that tops vitamin and pill bottles? Outta here. They need to be the nice easy paper ones that I can rip off with out a sharp instrument.

Okay? Thanks. Bye.

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.