Question to other cancer survivors here.

[fairyslipper]

I have noticed something that happens in my life over and over again and am not sure what to do about it. I was diagnosed with breast cancer almost 9 years ago now. 4-11 is my anniversary date ( I always do something fun to celebrate  ) It is a big deal to me still because a few months after I was dx'd my mom was. And then my first anniversary they thought it came back. Anyone who has been through this knows how crazy and surreal of an experience a cancer dx is. And it is a pretty life defining moment. I have taken the positive road in coping and used it as a kick in the pants to make a lot of very good life changes. The one thing that continues to haunt me and this is my question to others is.......how to handle people that when you mention it ( I have a lot of shame around this, like I should never tell anyone) to them, because somehow the subject has come up in conversation usually on their end.....and you open up about it a tiny and I do mean a tiny bit..........crickets, or a complete conversation change.........no acknowledging whatsoever of what you have just said. It just reinforces for me that I need to be quiet, I make people uncomfortable etc. I feel really good about living this long after a diagnosis. Very proud of the life changes I have made and everything. What kind of bugs me is in October these same people are all about the pink and the cure and blah blah, but in everyday life, they sure don't want to hear about it. It sometimes makes me feel bad that I still think about it. But it is a part of me, just like getting married and having kids, a very BIG deal. This time of year with the change of seasons, smells in the air, brings it all back. Not in a scary way anymore but in a grateful, I am still here way. How do you deal with people that make you feel uncomfortable for even bringing it up? I am not looking for sympathy or pity. It is usually in response to something they have said, so is relevant to the conversation. I find myself getting angry afterward, and then feeling stupid for once again opening up about something I shouldn't have. Do you think after so much time, I shouldn't be thinking of it? I don't know.....like I said I feel very grateful to be here and enjoy things that when it happened I wasn't sure I would. I hope this makes some sense. Thanks 

[schrödinger's cat]

Your reaction to being diagnosed with cancer is inspiring, and so is the way you now celebrate life. Ugh, this sounds so wooden, but I just lugged a ton of shopping home through noisy traffic while my kid told me twenty variations of the same joke, so my English has gone bye-bye for now. But I meant what I said - it was uplifting simply just to read your story, and a great example to me. 

Can I say something even though my own experience is about losing my father when I was about twenty? The responses I got were much the same. When people talked about their parents and it was my turn to talk about mine, mentioning my father's death was a sure-fire conversation stopper. It's like in an old Western when the baddie enters the saloon. Quite literally, in fact. Everyone froze... everyone suddenly inspected their shoes, or looked about the room as if yearning for a rescuer... no one met my eyes... It made me feel like a leper. "The chill touch of mortality is upon me! Save yourselves, good people! Unclean, unclean...!" Much fun.

So nowadays, I'm thinking it's a freeze reaction because they're overwhelmed. There's this idea in people's heads that they have to "say the right thing" - something comforting or encouraging or tactful, or something that will fix things for us. The pressure is enormous, because after all, the matter is quite serious and they have no wish to make it worse. But what on earth is the comforting, tactful, encouraging thing to say? They don't know. Irresistible force meets immovable object. The result: they stand there like a deer in the headlights. Or they decide to play dead.

I wonder whether it would be helpful to simply say: "You seem overwhelmed, or unsure what to say. It's okay. This is big. I should know, right? If you're not sure what to say, then just tell me, that'll work. You don't need to be familiar with my situation, you don't need to come up with THE most comforting and encouraging thing to say that anyone ever said to anyone else, you don't even need to get what I'm going through. If you wish you could relate to what I'm saying but you can't really, then that's okay too: just tell me. You can then ask me what it's like for me, and I'll tell you, and you'll express your understanding and compassion as best you can, and then we'll hug and talk about something else. I just need your presence, your honesty, and some visible attempt to relate to me. Even a ham-fisted attempt is better than none."

Not sure if anyone would even have listened for that long...

[Rain]

Hi fairyslipper!

First, how very awesome and impressive on your survival, not only physically but emotionally as well!!    I will wish you Happy Recovery Day ahead of time.

Cat has said it so well, it is the deer in the headlights, old Western with the bad guy entering the saloon response.    It is people's fear, and they do not have a part of their brain developed for response.   It is not you.   And, the topic you brought up is an amazing topic ...it is part of your life, cancer does not define who you are but what you were able to navigate through ...and that does define you.

They cannot cope.   When all they need to say is "Wow! And, what does that mean for you personally?" and so on.

I hope you can let go of the "shame" as there is no shame in it for you, fairyslipper.

The best advice I got from a therapist was his quote, "you know, it is very possible that the whole world is mentally ill."    Everyone on the planet has issues, fairyslipper.    People cope with checking out ...the "crickets"    If they just do not acknowledge the elephant in the living room with the sign around it's neck that says "you will die one day" then they can go on with their lives ...for awhile.

And, death is the gift which gives meaning to every breathe, every moment of our life.   Are we living this moment fully?    There will be a last breath one day.   Did we dance?  Did we truly live?

Again, way to go, fairyslipper, on surviving, and most of all, learning to truly "dance" in this life.

Maybe instead share the gift you received from surviving initially with new potential friends.   Share that you love the simple gifts of life, etc.   Eventually, if they are friends they will ask how you know, and then share the source of your learning this gift you have.

Cancer survival has its gifts.   The same with the trauma, the sorrows shared at OOTS.   Out of sorrow comes a deeper capacity for joy if the person can grasp it.

[Trees]

Hi fairyslipper!

I, too, survived cancer!  (ovarian, two years ago)  The look on the cancer specialist's face as I was wheeled into surgery told me my odds were not good at all.  It was a bad bad time and the following year was far from pleasant.  But for some unknown reason, it had not metastasized and after surgery I had a good prognosis that turned out to be true!  Like you, I have made changes in my life to keep cancer at bay.  And, like you, I love talking about having survived cancer!                 Happy anniversary to you!   

People who  have not been so close to the edge just do not want to contemplate the edge at all.  S.Cat and Rain are right about that.   But like you, I also enjoy talking about my unexpected survival.  I try to frame it as, "Isn't it wonderful!  I am so totally cured from cancer!  It's so wonderful to be alive!", but of course that does not always go over real well. 

For me the difference is that people react so much more mildly to an announcement of previous cancer than to an announcement of CPTSD with previous homelessness and stays on the psych ward.  The amount of sympathy I thought I received regarding cancer was many many times greater than what I had received for the CPTSD.  The contrast made telling people about the cancer seem to be eliciting warmth and sympathy.

Have you been able to find a good site for cancer sufferers and survivors?   It's easier to find sympathy and celebration  among people like ourselves, with similar experiences (just as this OOTS site is such a blessing for those of us with cptsd).

FWIW, my own experience with cancer woke me up to parts of life that CPTSD had weakened in me.  The influx of sympathy brought me a renewed appreciation for human company, however imperfect.  Looking at death gave me a new appreciation for life even though I was someone who had been suicidal for many years, and actually did it attempt it a couple of times.  The "shame" of cancer, compared to what I endured with CPTSD, was pretty much nonexistent for me.

All the crying I did when I had to give up my dog when I became too sick to care for her did help me learn that lots of crying could actually lead me to finally finding it therapeutic to cry.  (I did get my beloved dog back right after the surgery.)  And I was strongly impelled to take care of my health, not wanting to ever see that sad look again on my dog's face!   I realized that even I, isolated hermit that I was, even I had someone whose happiness mattered more to me than my own!

So for me there have been many gifts.   I am much healthier and happier now, because of my cancer experiences. 

(And I cannot even begin to tell you how HAPPY I am to have HAIR again !!!  after all that nasty nasty chemo!  Some people look fine bald, but not me!  And I was so surprised that it mattered so much to me.  I learned that being bald is a lot worse than having too-thick hair that grows like crabgrass and takes forever to blow-dry!)

So let's you and me party down and celebrate your ninth and my second anniversary of LIFE!!!     

[Kizzie]

Happy Anniversary FairySlipper and Trees from a fellow cancer survivor (ovarian in 2007-2008 so 8 years out) 

FairySlipper, I agree with Trees that it may be you are encountering the fear surrounding cancer that many people have.  It's just a really scary topic for some. I recently watched a documentary on the pink ribbon campaign for breast cancer in North America and in it there was some very honest discussion about the campaign by women who were Stage 4. Quite a different tone than the clips of the various campaigns around the US and Canada.  One woman talked about reading a magazine while waiting at the radiologist and seeing an ad for a pink ribbon teddy bear.  She said she instantly became furious because she was looking death in the eye and there was nothing pink or soft or warm or fuzzy about that fact. I understood completely why she was angry because I've been there too.

I don't know that there's any way (or reason) to forget about having cancer, it's a huge life changing event, very traumatic in some ways and oddly life affirming in another.  Like Trees I've found most people are very empathetic, but perhaps it's because I don't talk about it with anyone that I think will not be (FOO with a personality disorder - definitely cricket time with them or worse -"OK, enough about you, let's talk about me!").  So perhaps you can look for people to talk with who you think will respond with grace and empathy.

Anyway FairySlipper, just my two cents FWIW    So glad you are here with us these nine years later! 

[fairyslipper]

Cat, Rain, Trees and Kizzie....Thank you so much for your kind words  In the beginning I did go through an angry phase, but it did pass, and I was just so grateful..... I looked at life after, as a whole new life in a sense. There were things I wondered if I would get to see, like my daughters getting married. They both got married this past year.....and it was beyond wonderful being there. There were and still are many gifts.

I can honestly say, and this just shows how toxic they are, that dealing with my npd/bpd mom, endad and npd brother were honestly WORSE than having cancer! Seriously.

I read your responses over and over, and am just so grateful for all of them. Yay to you too Trees and Kizzie. Very happy we are all still here and that we have met. Thank you all for the wishes for my anniversary date. It is a really special day for me  Just posting here and having you say the things you did really helped me more than you know. It helped me realize that normal people are capable of responding and empathizing as much as possible. I think the times I have shared my cancer experience and that has happened it has been more about me sharing with the wrong people. Thank you for saying it wasn't me and that I shouldn't feel shame about this. I also agree very much with the bad guy analogy and nobody knowing what to say at times.

Cat I am so sorry you experienced similar things when trying to share about your dad.    Sometimes just the smallest acknowledgement is all we need. Just to feel heard and understood.