unrealistic expectations

kellieincajuncountry

I was diagnosed with a new breast cancer in January this year. January'13 I had DCIS and a right mastectomy. This new diagnosis is on right lymph nodes axillary and supraclavical (some in neck as well)

We had a plan....for about 6 weeks. Then a second scan found metastasis in liver. My problem is husband and adult children still believe 6 rounds of chemo and I will be cured. Friends ask if I caught it in time. And no one seems to understand that there is remission but no cure. One person was offended I told fellow volunteers at school ( I told her I figured when they saw me with no hair they would figure it out).

How do I respond? Do I correct family? Well we found cancer quickly just can't keep it from spreading? Sometimes I think I will flip if I hear "you got this" one more time.

Moderators

Dear kellieincajuncountry, Welcome to the community. We are sorry about your situation but so glad that you reached out here. You will find many others who share your concerns and will be supportive and offer their own shared experiences. You may find more activity and responses to your situation among those with metastatic disease in the Stage 4 forum. You can browse the topics or start a new one as you did here. We hope that you will stay connected here and keep posting. Let us know if you need any help. The Mods

mustlovepoodles

Cancer makes most people very uncomfortable. It is hard to entertain that a friend or loved one has cancer; after all, if it could happen to YOU, they know it could happen to THEM. So, they sometimes say dumb things, sort of as a talisman against having cancer themselves.

Personally, I wouldn't correct your family. It will become apparent sooner or later that you won't be cured. On the other hand, you could very well live a long time with cancer, given proper treatment. Maybe give them a break on this--they are scared, hopeful, shattered, and trying to accept the situation. Cancer visits the whole family, not just the one who is diagnosed with it. If your DH just can't talk about it anymore, try seeing a therapist. Sometimes in situations like this, a good therapist is exactly who you need, even more than family.

As for friends and acquaintances, I wouldn't even bother with them. You're going to hear a lot of stupid things that will make you roll your eyes. When they say, "you got this", just roll your eyes and reply, "Yes. Yes, I do." And nothing else. If you engage with them it will only upset you and them, and make you sound bitter an defensive and who wouldn't be? but bitter and defensive will run people off quicker than a skunk with her tail raised. You will need some of those friends and you might be surprised at who hangs in there with you--it might not be the ones you think.

edwards750

Good advice mustlovepoodles. I think friends and family are just scared. They can't help it. So are we for that matter. No one wants to believe we have an incurable disease. Heck neither do we. I think they say things like we got it in time because they want to believe that. Again so do we.

I am almost 5 years out and I am so over comments like those. I share my innermost fears with my group from my church. Other than them I usually just keep my game face on for my husband and children. It's better that way.

It's not that people mean to be flippant they just don't really understand. We are encouraged by our small victories with BC like NED and clear scans and normal mammograms. It's what keeps us sane.

When a recurrence occurs our faith is shaken and our fears are back. Our disease is lifelong. No guarantees. I had a friend who was DX with Stage IV after 8 years and one who is currently dealing with a recurrence. Obviously she is shattered. Completely blindsided.

There are no words that will be comforting. They know and we know. Many Stage IV women do live a long time. There are a lot of them on this website. They are strong and determined ladies. I am impressed by their resolve. I am such a wimp I would fall apart. They haven't and they won't and neither will you.

Keep the faith.

Diane

Frill

I think we all deal with this in some form. Having to listen to idiocy spewing forth from people, family not understanding or refusing to understand what is going on, the comments about strength and courage. UGH!

No one can understand till they walk in our shoes. I can't understand what you're going through. I think what Mustlovepoodles is right, there's nothing to gain by correcting people. Plus, it will just sap your energy and you should conserve that for doing stuff you want to do!

We're all here for you. I find that this and my cancer therapist and here are the only ones I discuss this with in detail. Everyone else is pretty much on a need to know basis. Huge hugs.

Oh! .When you mentioned the "You've got this," I remembered I got my DX in Oct which I guess is breast cancer awareness month or something. I threw away every pink ribbon. I hate pink ribbon anything.

fireheart438

My biggest gripe is when someone on my treatment team makes one of those trite statements or calls me "hun". I try to remember that this time last year I was like them - compassionate but unable to truly relate. That helps me put those comments in perspective...but usually not until after I get over the urge to throw the person in front of a moving freight train.

The other week I got a call from a scheduler at the cancer center who had made my pre-chemo appts and the ones for my first 4 infusions. The times for some of them were just not going to work for me, and I felt like I had no input into the matter. Frustrated, I began to cry. I tried to pull myself together and told her I was sorry. That's when the "hun" (I met you once for 10 mins, I'm not your hun.), "we try to work with you" (Working with me would have meant your calling me first to ask about appointment dates and times to truly give me options.), and "it's okay, it's a journey" (My response to this is not even PG-13, so I'll spare you all.) comments began. I wasn't crying because of the BC, I was stressed because I felt like my calendar is one of the few things I can control, and that was being taken from me.

After hanging up I got myself composed, looked at the appointment page online, and called back to change what I needed to. Thankfully I got someone who was super understanding and helpful. She took the time to really hear what I was saying. And she did it without making me feel pathetic. While it made me mad at first, I decided to use this experience to make me better. It has become a lesson to me to think before I speak and to go the extra mile when I'm helping someone resolve a problem.

But I sure am grateful to have this forum for venting with people who really do get it. A book I read last year that helped me greatly was Tom Brokaw's A Lucky Life Interrupted. In it he is extremely candid about dealing with his cancer and the emotions he went through. Little did I know that a year later I would relate totally. Definitely a worthwhile read.

exbrnxgrl

Hi,

I was also diagnosed with mets about 6 weeks after my bmx (thought to be IIB). I handled it a bit differently than some. First of all, I considered my audience. Since they were all adults, I was not too worried about whether they were comfortable or not, after all , i was the one with cancer, not them. I was very honest with my elderly parents, as they had already lost one child to cancer . While my sister was sick, a lot of info was kept from them or soft soaped and they really resented that.
When I returned to work, I was honest with anyone who asked. Not my job to "spare" their feelings. Over the course of several years all of my colleagues and school community knew my situation. There were no rumors, no looksof pity etc. I controlled the info and everyone knew that they could come directly to me if they were concerned. I set the tone and the attitude and it has worked well for me. I don't want people to be scared of cancer . I want knowledge of the disease to move us forward, not keep us hidden. But, and this is very important, you must know your audience. If you know that being open will cause you more discomfort, then don't! Wishing you the best.

Frill

Here's a good one - my pain dr suddenly on my second visit made up this rule that I was supposed to bring my prescription bottle with me. Ordinarily I would have had it with me, but of course that day I didn't, it was in my purse and I take the train to the hospital and leave my purse on my desk. Plus, there were never any kind of instructions given to me that said I needed to bring my pill bottle with me. I mean, what does that show?

I asked him where those instructions were. Then I set about listing the potential places those kinds of instructions *could* be, but weren't, because essentially he was being an ass. He tells me, "Don't get all lawyer-y on me. I'll write your prescription." W-T-F.

I can't wait until I don't have to see him anymore.