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My contacts were limited to family and 'phone friends immediately following my diagnosis and surgery for colon cancer. I couldn't drive for six weeks after hospital discharge and thus spent a lot of time (when I wasn't at one doctor's or another!) reading and napping.
It's also when I joined C/D.
It wasn't really necessary to bring up the subject, since my family members were generally the ones who brought it up by asking a.) how was I feeling, and b.) what do the doctors say?, and c.) what are you hungry for?
When I finished chemo, I auditioned for a play, got the role, and began rehearsing. I told the members of the cast, many of whom I had known for some time and some I had never met before. There were no further discussions about the state of my health during the run of the play. (Which was a screaming-with-laughter comedy)
People who don't want to talk about it are usually afraid or still in denial. People who prefer not to talk about it are usually busy doing something else. People who need to talk about it are still wondering what hit them.
Today, a survivor friend who founded and runs a national young adult cancer nonprofit and I went to meet with a 23 year old who has been on chemo for leukemia for a year. She was diagnosed in her senior year of college and had to drop out and move home, and feels incredibly isolated from her friends who are all graduated and starting their first jobs. She talked about how for a long time, she felt really ashamed to talk about her cancer even though she is actively fighting it.
That's why I don't like putting labels on what we should or should not talk about. I had just turned 23, just moved across the country to start my first job, had unsupportive parents 1000 miles away, and had a boyfriend dump me 2 months into chemo. So yeah, I did talk openly with everyone. Call it lack of a support network or a cry for help, but it worked for me. I was just beginning to figure out what adult life was supposed to be when I got sick, and had no basis for connecting with others outside of cancer. Some people rock climb or bar hop after work - I fought cancer. It felt like a normal thing to talk about because it WAS my normal.
Being so open about it has helped me be of service to others in the community who can't or won't talk about it, but need a release. I feel like the entire Boston medical community has at one point seen me naked, bloody, crying, or stuck up with needles. They all know what I weigh, the weird location of my moles, and my scars. I have no more shame. As a way to try to raise awareness about young adult cancer risks for high schoolers and college students, I've answered intimate cancer and sexuality questions to an audience of hundreds, articulated my struggles to get diagnosed to college health center professionals, and spoken at an oncology social worker's conference to highlight the challenges of serving a young adult population. By talking openly about my situation, I've become empowered and have a level of confidence to make change and positively influence those who come after me in a way I never could have imagined.
Which isn't to say there's anything wrong with NOT wanting to talk about it. But everyone's different and everyone reacts a different way. You can't label any one reaction as better or worse - it just is and you have to go with the flow!
I live in a very small town. My ootions are let the rumor mill run with their own stories, or be very public and accessible about my story.
I was a volunteer EMT, still am a volunteer firefighter, volunteer with my Church - easy to day everyone knows me!
Jusr prior to my first diagnosis five local communiyies came together to fom WEPAC. It gets it's funding from the Hoops For Hope basketball game. The game is played by volunteers - female basketball stars from all over the country, including some of our highschool girls. The proceeds pay for mammograms, colonoscopies, and wellness exams for the women living in the communities. My diagnosis came just days before their first game. My story went public, through the newsmen here to cover the game. How convenient to have an actual breast cancer patient willing to do interviews! LOL It all went well, and many women have been served by WEPAC.
Do I talk about it all the time ad nauseum? Sometimes. My life is an out of control rollercoaster. The higher the stress of my blood work being whack, scan results with more bad news, chemo stripping my marrow's ability to produce usable blood cells, paying to stay alive, trying to figure if I will be able to work until the day I die, or will I be forced to retire by illness. The kist goes on and on. So ya, when it's on my mind I'm sure I use too many people as sounding boards. This. Is. A. Big. Deal. I am dying. I don't want to ********** up and leave my husband destitute.
I try to be a little sensitive to not overun people with more information thsn they want. The first diagnosis is somewhat like the first grandchild. EVERYONE gets to see the pictures, even old grouches like me. People share life events, just roll with it.
I wear do-rags on my bald head so that sometimes invites people to ask me how it's going.
One of the reasons I've not talked about it much is because I was moving from the conventional med docs to more alternative and dreaded the reactions of those who asked about me. To my delight, most have been supportive--of course there are looks of concern but for the most part, folks have been interested and several have shared that that's probably what they would do as well.
I know talking about the big nasty C word makes others uncomfortable and talking constantly about it gets on their nerves, so I keep it to myself unless asked.
But, thank goodness there are threads/posts like CD and other forums where a person can talk freely. Unfortunately, there are still those posters who make nasty and snide remarks on these cancer type posts, but at least most of the posters are in the know about cancer and will make a person feel better about himself/herself. There was a time after I was diagnosed that I felt worthless and less of a woman, so talking about it helped. Now it's gone, I feel better about myself and a lot less scared. In fact, I feel invincible because I know a lot more these days and I also feel happy and honored that I've had the privilege of reading about others and their plights!
I know talking about the big nasty C word makes others uncomfortable and talking constantly about it gets on their nerves, so I keep it to myself unless asked.
But, thank goodness there are threads/posts like CD and other forums where a person can talk freely. Unfortunately, there are still those posters who make nasty and snide remarks on these cancer type posts, but at least most of the posters are in the know about cancer and will make a person feel better about himself/herself. There was a time after I was diagnosed that I felt worthless and less of a woman, so talking about it helped. Now it's gone, I feel better about myself and a lot less scared. In fact, I feel invincible because I know a lot more these days and I also feel happy and honored that I've had the privilege of reading about others and their plights!
chick, I have also found that there are a couple of different types of people: Those who will ask how you are, but don't really want to know more than, "Oh, I'm fine"; and those who will ask how you are and really are interested. I've met many of the first and I learned to interpret the signs that they only want a quick answer. Like you, I come here for a discussion on how others handle their illness.
The one thing I do is suggest nicely that it's wise to ask the doctor if a colonoscopy is in order. I won't shut up on that score. And if they cross the street when they see me coming, I'll send them a reminder card.
Well I can tell you that cancer is a game changer or a major life point marker. It is almost impossible today to keep it a secret. The treatments, the appointments, etc. etc.
Well since my last posting on this thread, I've been diagnosed with an unrelated cancer. Had surgery last month and stated my chemo/radiation yesterday (feel a bit blah today with the double whammy).
Since both of my kids know and my daughter broke down in tears at school, her Middle School knows. I get lots of the teachers asking how I am doing. My son's teachers also know. They've been really accommodating when it has come to rescheduling meetings since my daily radiation is early in the morning and usually conflicts with when they hold meetings. Everyone has been helpful and supportive.
The only person close to me I haven't told is my father who is in his 80s and on a 4 month trip with little telephone communication. Since this is the trip of a lifetime, telling him would cause him undue stress, possible health problems. I am dreading telling him when he returns next month. We do have email communication but wow, I don't want to dump this on him right now. When he returns, I should be done with chemo and radiation and in full recovery mode. I've really grappled with this. I haven't even told relatives on his side of the family because I don't want anyone telling him before I do. He really frets about my health and asks me every time he calls or emails. I hate to be the bearer of terrible news....
What do you all think?
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I talk about it
