I'm not the story people want to hear (nothing bad has happened, just musings)

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Has anyone else changed their attitude toward sharing their cancer story? I used to feel like I could give people hope - "It's been 5 years, I'm still here and kicking!" But now, I hesitate.

I found out that an acquaintance/friend had lung cancer, and has done lung surgery for it. She goes to the same hospital as I I do, they're a lesbian couple and have a kid the same age as ours, I could relate. I reached out to her on facebook, but I wasn't sure if I should have, since my cancer treatment ultimately wasn't successful. I ran into her wife yesterday and made sure to say "I know my story is not the best one, but I have been through 4 lung surgeries, so if she wants someone to compare notes with" etc. But I don't want to worry cancer newbies! I feel bad, because I theoretically could be a support, but I also theoretically could be her nightmare scenario. What do you all do?

Also, strange how the definition of "good" is different for different people and over time. Her wife said to me "We found out her type of lung cancer doesn't respond to chemo, just surgery, so that's good." As in, they don't have to do chemo. My cancer also does not respond to chemo, and therein lies the problem for me, not good at all, since surgery can't control it anymore. Nor radiation, nor immunotherapy.

Thinking of everyone, love the life in these chats.

Patricia

clg03 over 3 years ago in reply to Tony73

Yes, indeed. How someone telling me I look good is going to "make me feel" better about having advanced cancer is puzzling. It doesn't. What helps is love and presence and a walk in the park or a postcard or a letter or a call. Thankfully, most people seem to get that. I was inundated with cards and letters during the dark times. The cards were colourful, the writing was sometimes moving, touching, and replying took my mind off things. Or allowed me to share how I felt. We're all different, of course. I hope you get the support you need, Tony. Doesn't take many people, just a few of the caring sort.

CLG03...

Tony73 over 3 years ago in reply to clg03

Thanks

Tony73 over 3 years ago in reply to clg03

Its like when someone asks ' how are you' . Well like S xxT...actually and they back off.

People need to accept the honest answers and not hear what they want to hear.

PatriciaV over 3 years ago in reply to Tony73

It kind of feels like they are dismissing all the distress and discomfort you have, when they say you look good. I had that reaction more when I was on treatment, when it seemed like some people just didn't want to hear about the misery part of things, were mostly interested in hearing from the cheerful, hopeful cancer patient.

But I also feel like when I tell people about my prognosis now, they expect me to be keeling over practically. And are amazed that I seem well still. It's puzzling to me that I feel ok, so it kind of validates it that they are puzzled too and say I look great.

ButI hate when people are hopeful (except on here), like "Well, we'll just have to hope something positive comes along, maybe they find a cure, you never know." Um, yes I do. Been there done that, there are no cures in the works in time for me. I'm not depressed, I'm just not deluding myself. Don't treat me like I'm just giving up too soon and need some cheering up! What, am I supposed to try to convince you that I really am going to die soon? Of course I hope to make it past my sell-by date (love that!) like some here, but I'm not counting on it. I've got too many things to do with and for my family, to pretend it's not happening.

PatriciaV

Tony73 over 3 years ago in reply to PatriciaV

Yes you make some interesting observations.