Just thought I would pass on to everyone that a show called The Truth About Cancer will be on PBS tonight. Here is a link about the show
http://www.pbs.org/wgbh/takeonestep/cancer/index.htmlAt the top there is a place to check where and when it will be playing.
An amazing dialog.... if you didn't see it, check your PBS listing for when it will be on again. It is not a blue sky, everything is going to be wonderful story line. It is hopeful, but does not depict the current situation in any false optimism, other than a much less than sunny gray color -that we are not currently winning the battle against the many forms of this disease, but making small bits of progress and understanding. It has moments of brutal, raw candidness. Painting the battles in brush storkes of raw emotion. I found myself with a lump in my throat through parts of it. But in the end, I am glad that I watched.
As with all those who pass through the world of these OCF forums, I was struck by the emotional courage of those in this battle. I am constantly inspired by the ennobling inner strengths exhibited, by not just those in the story, but equally by the people who have crossed my life via OCF. It is a privilege to be part of their journey regardless of its destination. The show was sobering in many respects, but worthy of your time.
If you are emotionally fragile right now, tape it for later. I am 10 years from my diagnosis, and I still carry the emotions of the early years, and I am still impacted by specters in the shadows of my routine aches and pains, which never let my mind go to anything other than think of the big C again, no matter the real cause. It is perhaps how I will always be. But the fears and the uncertainty have become so much a part of my emotional make up, that I wear them like an old familiar sweatshirt. One that perhaps I should have discarded long ago, unattractive to look at, but strangely comfortable in my acceptance of what it is, and how used I have become to its fit and feel. Perhaps this is survivorship....
I recorded it and watched it last night. There is an HD version avaiable as well plus you can stream it from the PBS site. It was very moving and well put together. I especially like the talk section at the end.
As a "survivor" who won't have his six month PET scan until next month, I found the show very moving but especially enjoyed the talk section that followed with Linda Ellerbe who dished on how upsetting it was to be constantly told first thing by well meaning friends and colleagues: "Oh you'll be fine". Brian's post of the feelings and spectres even a decade later captures one of the hardest parts of cancer for me: the constant checking by doctors for "reoccurance". Be forewarned, this show's protagonists don't have happy endings. I thought it also odd for the show to comment that Lance Armstrong won the cancer lottery when the male doctors who were on the Linda Ellerbee part were all prostate cancer survivors. While I know first hand from watching my father die from metastic prostate cancer how painful and traumatic these cancers can be, I also know the special burden that oral cancer places on us. If there was any mention of OCF issues, I missed it (but then my eyes often watered up at some scenes). Any OCF members with PBS connections? The stories on this forum would make a riveting show.
As usual the show made no mention of oral and head and neck cancers. It did have something in one spot about brain cancer, but ironically brain cancer is a separate type and not part of the head and neck cancer group.
[quote=Brian Hill]As usual the show made no mention of oral and head and neck cancers. It did have something in one spot about brain cancer, but ironically brain cancer is a separate type and not part of the head and neck cancer group. [/quote]
What I constantly find amazing, wait, let me back up.
My wife works in the medical field. When I was diagnosed she was working with a group of ophthalmologists, some of which specialize in eye cancers and do research at St. Jude here in Memphis.
She is now working for an ear group, which has ENT and ENTH&N on staff.
Both of these groups have told her what a "rare" cancer I had. Of course all of he standard questions about how much did I smoke etc, then they are blown away by the negative answers. Perception is everything.
Kevin
You are so right. It is a factor of perception and reference. If you compare it to 200,000 breast cancers a year, or the number of lung cancers, it is dwarfed and seems small, but I hate to say rare. Ocular cancers and other head and neck cancers are rare. Not oral cancers. But all you have to do is look at the death rates as a percentage, and 98% of ALL breast cancer patients are going to survive. (What you are seeing with that is early detection's impact.) Compare that with the 50% 5 year rate for oral and you would think that it would get more attention. This is what OCF HAS to change.
I watched that show and found it very interesting.
Brian,
I'm a data junkie.
I'm always thinking of stats, and how to best present the real picture.
Do you think it would be possible to somehow depict the location of the OCF members and caregivers? It may give a visual that could be especially useful when trying to show how many people are afflicted with head and neck cancer in the states and across the globe to PBS, doctors, all types of venues. I noticed as a caregiver from the Buckeye state, that there seems to be a lot of us here from Ohio. This info could even help bring awareness to our health care system to show where there is a greater need for CCC's around the world that specialize in head and neck cancers. Many people travel hours to get to their CCC's. It would be great to help get good treatment where it's needed.
Or at the least to show what a need there is for help with transportation to treatment.
Maybe the location of members could be pulled from the profiles to be compiled and then could be used to make graphs/maps, etc. It might be a visual that people could use when they are guest speakers, and so on.
What do you think?
OCF on represents small number of oral cancer patients as most do not find us. We could use a Google maps to let people post their location on it, but drawing from what people have put in their profiles would not work. The say things like USA, or a state, or nothing at all. We never used to even require it as a registration feature, and even since doing so there is no way a making them put in a city and state. The national cancer registry, the SEER numbers all speak to how this disease is not rare. But you have brought up an interesting idea. It might be interesting to see where those who come here all are. They would have to join the map on their own though.
I do this on another aviation message board that I post to regularly. It doesn't serve any real function, but it is interesting to see where people who like to fly off the grid - landing in riverbeds and fields are at.... I'll talk to Chester about your idea.
Sounds good Brian, I think you're on to something!
I often wonder where exaclty people live too. It would be nice to see the areas we live in.
Yes, that kind of data would be interesting. I have ran in to several folks through this board from the Midwest/Ohio. I linked on to PBS and the show currently isn't airing, at least in this area. Maybe this weekend I will link through the web site and view the links. I sure agree with Brian's comments about looking over your shoulder with every little ache or pain. Like everyone else here, learning to adapt and go on continues to become more bearable although it's always there, tapping your shoulder.
LiveLong, LiveStrong--Steve
Since we are starting state chapters the geographic data would be very helpful. Is the data from SEER broken down by region,state, treatment location, patient residence?? It would be interesting to compare our informal forum data with the hard data from SEER.
Is it possible to canvass all past participants on the forums via email? We could get the geographic data and inform them of the formation of state chapters and request participation.
On numbers and the need for education, prevention and adequate insurance:
The nurse for the ENT Oncologist I go to at Tulane University Hospital worked on the ENT unit at Charity Hospital before Hurricane Katrina destroyed it. She told me that patients came in "smelling of death." Although uninsured and indigent patients are treated at the local facilities on an emergency basis, there are not enough ENT beds for patients without insurance and unable to pay. She has had trouble getting these patients into the public hospital in Baton Rouge an hour away from here and sometimes cannot even have her calls there returned.
Much of the health care of even the middleclass here as elsewhere is on an emergency basis because many families cannot afford health insurance and many employers offer only minimum plans which do not cover catastrophic illness such as cancer.
This is not only a problem for the financially strapped. My husband went without insurance for 2 years from age 60 to 62 until he was eligilbe for retirement because our small business insurance covering only the two of us was about $1250 a month. He could not find a more reasonable rate because he is diabetic. We took a gamble reasoning that I was healthy and if anything happened to either of us we could pay out of pocket and make payment arraingements if neccessary.
The need for awareness, screening and suppoprts extends across all of these populations.
Malka
The SEER database has lots of information in it, but you have to remember that the information is much like the Nielsen TV ratings.There isn't a monitor on every TV in the US. There are only 13 SEER collection points, not the entire US. Some cosmopolitan, some rural. It would be financially and logistically impossible in our country today to monitor everything. So it is a good database for projecting things, making assumptions about what is happening in the US through extrapolation of the gathered information, but it is not as finite as looking at every city in every state. The SEER numbers can be accessed by anyone, and you can do you own searches of them with a little practice. Someone emailed me with the obvious question to those not familiar with cancer or disease statistics in the US, and that is what does SEER mean.
Surveillance, epidemiology, and end results.
We have the ability to send an email to everyone that ever provided one to OCF in the past. But I would guess that about a third of them would come back as non deliverable as people change their address, and others would just not be answered as people after being helped, sometimes never come back, as even the discussion of cancer raises fears in them. One person who I think is at high risk for recurrence because of the treatments the had, (or didn't have) does not even go back for scans and exams. They say that it isn't part of their life anymore....
While your post about the insurance and medical system reflects my own opinions, I think that everyone, even the politicians agrees that the medical system in the US is broken. I am not optomistic that anyone is capable of fixing it.