Talking about IT

[Joppette]

Nick's post was so amazing, and the responses so good, that it inspired me to post a thread similar to his. He wondered how we handle those who do not care/advocate/support lung cancer issues.

I was very surprised by a comment that was made by a member of my Gilda's support group a couple of weeks ago. She is a breast cancer survivor, and said that she and her husband never discussed the "C" word. She said they went about their lives as if nothing was wrong, even through her surgery and subsequent treatments.

She said he was recently diagnosed with Parkinson's and they don't talk about that either! She thought that if they discuss it, it makes it more real.

This took me completely by surprise. And yet? When I was dx with lung cancer, my husband didn't want anyone to know. This perplexed me. He felt that #1 - if we discussed it, it did make it real. #2 - if people knew, they'd be asking all kinds of questions that he didn't want to deal with.

To the #1 - I say IT IS REAL. Putting the proverbial "head in the sand" approach only makes the experience lonely, and that is the last thing someone living with cancer, or any other disease wants to feel. This discussion board is proof of that. It is healing to share the burden, the not feeling good, the side effects, and the profound effect the disease is taking on us physically, mentally, and spiritually. It is immensely helpful for caregivers to be able to "talk" about the pain they are suffering, without judgement or criticism. It is critical to healing to have support, whether on-line or in person. I advocate for both (as if you didn't already know that about me).

To his #2 objection, I say we SHOULD talk about it, and answer people's questions. You never know when something you've shared with someone else may come to play in their lives down the road. They will remember something you said, and be able to deal with their situation better. Knowledge is power, we need to share that.

And for those of us that believe in prayer, how can we ask for that if no one knows what is needed in prayer? If you don't believe in prayer, maybe it comforts you to know that you "are in someone's thoughts". Another element that is important to healing.

I just wondered if there are folks here that feel they can't share, and talk about it, and what effect that is having on you?

Judy in MI

[biker90]

Hey Joppette,

Thanks for bringing up this subject. My wife and I never hesitated talking about cancer with anyone interested. It started by visiting forums like this and thus identifying with the people there. Reading their stories made it lots easier to talk about ours.

I wonder how many "lurkers" (people who read but don't post) there are out there? I bet we'd be surprised by that number. Making that first post was hard to do but once the ice was broken it made the whole cancer experience a lot less lonely.

We got on a prostate cancer forum as soon as I was dxed so logging into lung cancer forums was easy. And even though the two are vastly different in the side effects of treatment I bet that if you left out the name of the cancer, the posts would almost be interchangeable.

We told out children and relatives as soon as I was dxed. That was hard because no one likes to inflict pain on a loved one. However, we felt it would be much more painful if we didn't tell them. Then we kept them up to date all through treatment and today we still discuss it with them from time to time.

I was still working when the prostate cancer came about. I told my boss and anyone else that was interested. Ya know what? I had an instant cheering section from all my co-workers.

There are some people out there without cancer who just don't want to hear about it. That's fine with us. We never push our story on anyone. We have many friends who have various kinds of cancer. Some like to talk and others don't. We feel we have helped a number of newly dxed folks come to grips with their situation. Doing that is a very rewarding experience.

With cancer, patience is essential and attitude is everything.

Hugs to all,

Jim

[Joppette]

Thank you Jim.

I appreciate your thoughts on this and your coming in and posting about it.

Attitude is everything. I completely agree with that!

Thanks again.

Judy in MI

[jaminkw]

I learned the value of "saying it outloud" when I was in therapy. Then I spent my professional life convincing others of the same. It is not always easy, especially if you come from a family where NOTHING of any emotional consequence was talked about. So sometimes I struggle but always wind up coming here and saying it outloud and saying it outloud to my husband and close family members. As far as talking about cancer, I do with anyone who is interested. Well maybe they are not all interested, but it is a healing tool.

Judy in KW

[Nick C]

It's good to talk about it...unashamed...sure fear is a component, but it doesn't need to paralyze us.

I don't talk about it all the time...I'm sure I talk about it more than most.

Very cool post!!!

Well done!

[Joppette]

Thank you Nick!

Judy in MI

[Alan]

Hi Nick, Judy and all,

My friends and family were concerned and shocked really when they all found out about my surprise. Well, when it happened, it wasn't much of a surprise to me. They sent cards and e-mails and called to check in. No one really wanted any details, mainly showed concern and worried about Susan, my wife. Many of them seemed like they were afraid to be the one next to me if something awful happened. They kept their distance or so it seemed to me. It was interesting because family was never all that close anyway. One of our oldest friends is a chemo nurse and she wanted every detail I knew. She helped me through alot.

I want to talk about it but only if someone is really interested. Turns out they are the ones who have been affected by some sort of cancer in their family or group of friends. None of this is new I'm sure to any of you. I find that when I'm with a group of other survivors, the talking can last forever and turn to laghter then tears then laghter. No one can get a word in edgewise. One time 4 of us were asked to attend a sort of conference to talk about things the hospitol could do better for patients. The moderator at times looked like a 3d grade teacher trying to keep a group of unruly brats in line. We got so far away from the subject and were yacking at eachother. It was crazy. Anyway, I discovered how easy it was to open conversations with people who looked so alone and scared. Like me or anyone else, they are always happy to have an ear nearby. Those are truly the most rewarding and welcome times.

People have their own issues whether it's cancer, heart problems, anything. I would never open any conversation with my problems. Some have said "if there is anything I can do". I think from now on I'll tell them to make a charitable donation of their choice. Maybe they will think about it. Maybe I'll tell them to paint my house. That was out of line. sorry.

I didn't discover this group until almost 2 years from dx. I can talk about it here all I want. How cool is that? I read almost all the site. I'm surprised by the number of people who have been writing for years and years. I hope I'm still writing some years from now. (you may not). Anyway, talking is much easier with other survivors. When I read Judy's note about being the speaker at her upcoming function, I welled up myself. She said she cried through her speech. I'd cry right with you, I wish I could be there. Alan