Don't tell me...

[jmarie]

After a few weeks of random unexplained pains, symptoms and now having tests done to rule out spinal and brain mets I can't handle hearing these phrases anymore. They come from very close family members that's are my usual source of support in these times but I feel like they have suddenly buried their heads in the sand and are in complete denial over my situation.

Don't tell me...
...don't worry
...it's nothing, I'm sure
...keep the faith
...your being too negative
...don't be nervous
...I have a good feeling, its not cancer
...oh I have had that before and it was nothing
...your just being paranoid
...you have to stay positive
...just don't think about it
I am sure there are a hundred more and now I am going blank.

Of all of these, the comments about faith are the worse. Don't discount my deep faith in God by implying that if it turns out I have a brain met that it's because I didn't have enough faith. I don't mean for this to turn into a religious debate, but I am just frustrated by people close to me trying to pacify me with all this crap.

[Grace14]

I know exactly how you feel!! I get the same thing the best one is stay positive I hate that...do you understand that I have a life threatening disease!! I know I'm only stage 2 but that could change fast. I just think that sometimes people just don't know what to say. I totally get what your saying though!!

[beth568]

Don't discount my deep faith in God by implying that if it turns out I have a brain met that it's because I didn't have enough faith.

Yep, this is one that bothers me, too. I understand what people are trying to say, but some of the trite stuff about just trusting in God or saying that a positive attitude is the best weapon can start to rub me the wrong way. The disease is going to do what it does, and if I'm having a bad day and not thinking "positive," that doesn't mean I've caused a bad outcome.

I guess people come out with this stuff because they're scared and unnerved by the idea of cancer, and they're trying their best to be encouraging. My mom keeps telling me that she "has a good feeling" about what my next CT scan will show, and I'm trying to appreciate her optimism, but part of me wants to tell her to stop it, because I'm already a nervous wreck.

When you are feeling something intensely, no one can talk you out of it - you just have to get through the worry, and the discomfort, and move on. Our instinct is always to tell people to stay hopeful, to give themselves a break, whatever...but really, I'm learning that the best thing to say (or hear) is something more realistic.

I'm sorry that you're not getting the support you need. I hope that, once you get some answers and can move forward with the trial, they'll get a clue.

[Cj51]

Don't discount my deep faith in God by implying that if it turns out I have a brain met that it's because I didn't have enough faith

Oh, I SO hear you on this! I try very hard to appreciate the sentiment that they're trying to make me feel better, but it's hard not to snap at people when they spout trite crap like that. I detest the implication that if you pray hard enough, believe hard enough, think positively enough, fight hard enough, believe that God will heal you deeply enough...etc. that you can 'beat this'. I even had someone tell me recently that "You'll be fine, and you'll look back on this in a few years and think 'that wasn't so bad'." *(#$&#I*!

The only person that ever made a lick of sense was the nurse who, when I asked her if attitude really made any difference, said that people with a positive attitude tend to take better care of themselves, and thus have better outcomes. That I could understand. But I would wager that most people don't think it through that far. Me smiling and staying positive makes THEM feel better, and makes me easier to be around, and makes it easier for them to deal with the idea. And sometimes, it makes me feel better, too. But sometimes, I need a moment to let reality sink in, and to fall apart a little bit and it's more helpful to have someone acknowledge that I have good reason for the fears and anxiety I'm feeling than to deny the whole thing and tell me not to think about it. Hello, people, this is cancer we're dealing with, not an infected toenail.

I'm sorry you're having to deal with all of this, the stress, the worry, the pain, and everything else. It sucks, and there's nothing to do but put one foot in front of the other and do the next thing. And come here to vent occasionally.

I'm praying for you, Jess, for strength, for your family, and for a positive outcome.

<hugs>
Cj

[CheeseHead]

Yep, that sucks. If I'm feeling depressed/angry enough I'll tell those people what I think - I hope fairly politely. After that, they're quiet for a while.

If I'm doing ok, I'll just go "yeah, yeah" and leave it at that...


Cheese (not feeling exactly hunky-dory at the moment)

[Gaelen]

Me smiling and staying positive makes THEM feel better, and makes me easier to be around, and makes it easier for them to deal with the idea.

This, in a nutshell, is why we are subjected to the whole list of trite and (yes) insulting platitudes - they make the person talking feel better, ease them out of an uncomfortable situation.

I wasn't put on this earth to make everyone else "feel better" that someone close to them has a terminal illness. Just as nobody on earth was put here to magically ease my road and make all my cares disappear, neither was I put here to do that for everyone else. My disease is real, my risk and pain are real. Making me the architect of bad things by inferring that if I'm not positive enough, or god-fearing enough, then I'm not doing all I can to deal with my disease is BS parroted as a platitude to make THE SPEAKER feel better.

People in general usually want their reality in (mostly) small doses, and they (mostly) would rather not have to deal with tough situations and difficult emotions. They want life to be sunny and things to be easy. I could use some of that sunny, easy life, too - but the ideas that everything is solvable and life is always sunny and easy are just not real-world. I've only got X amount of time to live...and I'd rather live it surrounded by real things (and people who know how to be real.)

Strong thoughts, Jess.

[KimT]

Well your situation doesn't sound real good these days. Your lung mets are troubling and you've had several failed chemo regimens. When people say things like this, it's really to make themselves feel better. Your loved ones are seeing your health deteriorate and you have few options left with regards to treatment. I hope it doesn't offend you to say that. It is what it is,kwim? It's still insensitive sometimes what people say though. I just posted a vent myself last week. Sometimes it's just refreshing for someone to simply say...man that sucks, I'm sorry. I really hate the pep talks sometimes. I want to talk about what frightens me without worrying about upsetting someone else.

The faith stuff doesn't bother me. I have a strong faith. But my understanding of faith does not mean I will get everything I want. I'm dealing with my second primary. It blows. I don't think I got cancer again because God doesn't love me or because I didn't have enough faith. S**t happens. My faith helps me to deal with my diagnosis. It helps me on a day to day basis but I still know that I may one day die of cancer. I hope not. I'd like to see my son grow up. But I don't think my getting cancer again is because I didn't believe enough. I still believe. But sometimes God says no.

I'm sorry your loved ones are insensitive. They really don't know though. You can't unless you've been through it. It's nice to have a place like here to talk frankly about our frustrations and know that someone else gets it. I would post a hug smiley but I don't want to piss you off

[Cj51]

People in general usually want their reality in (mostly) small doses

That's something I'm going to have to think about a little more and remember.

I would post a hug smiley, but I don't want to piss you off

Now that's just plain funny.

[Nickmark59]

I know what you mean many people asked me and my wife are we angry at God for giving me cancer . My answer was always It was never gods fault and I never blamed him, it was my own fault what ever I did to trigger it was all on me Not on God.
But I did ask god for his help and accepted kind words of those who prayed for me who did so with the best of intentions.even if it did come out wrong sometimes.
For those who God called home it was never there faith was not strong enough that is what god wanted. If tomorrow my cancer comes back it is not gods fault either.
But when my time does come believe me I have a lot of questions for him when I finally get to meet him.
Then again maybe I do not want to know the answers .
This is definitely one of those things in life till you live in our shoes you have no idea.

[tdsamal]

Jess,
I understand your feelings on this one. People just don't understand unless they have been through it. I honestly believe they don't know what to say and they open their mouths before they think People are really uncomfortable around cancer patients because they hear that word and they automaticaly think death. No one wants to think about that but, they also don't want to NOT say anything. I think I would almost rather they say something stupid, than to just ignore me. I have lost many friends because of my cancer. They are just to uncomfortable around me. It makes me really sad because now is when I need them the most. The people that bring in God are only trying to share their faith with you. They mean no harm. We all know that God will one day say no and it will be our time. I still have my faith and turn to him. He is the only one I can count on to help me through this difficult time.
Tammy

[jmarie]

Usually I had been ok in just ignoring these comments but this last month I couldn't handle it. Over the last few weeks when I have had extreme back pain I kept saying to those very close to me something isn't right, this isn't normal back pain. My hubby was the only one who agreed with me, the others kept saying, "Oh no, its just a pinched nerve" which I guess technically it is "just" a pinched nerve, pinched by a bone tumor . A certain person kept saying "I refuse to even think about that", or "a lot of people have severe back pain that is just soft tissue damage". Well now that I have proven that the pain was severe enough to be a met and that I wasn't being paranoid, dancing around singing "I told you so, I told you so!" Just doesn't seem right. But maybe I got these mets because I didn't have enough faith or wasn't positive enough Sorry just a little bitter right now...

[michelle c]

I hear you Jess.....You have every reason to feel bitter, some people just want to bury their heads in the sand and don't want to hear about or have to deal with cancer and tend to dismiss it. Vent away Jess....anytime! Hope you're able to get some sleep....

[CRguy]

Sorry just a little bitter right now...

This is your place to let it out, my friend.

keep surfin' Jess.
CRguy

[Laurettas]

I'm a caregiver, not a cancer patient, but I find this conversation very helpful. I would like to ask, for my own benefit, what would be the best thing to say to someone in your situation? My husband has had cancer twice now so we have been in on the receiving end of the comments but at the same time, I don't want to say the wrong things to other people. Sometimes, unfortunately, things just slip out that you don't mean to be offensive, so I would like to know from those of you dealing with these situations what would be most helpful for you to hear.

I totally agree about the attitude thing. To me to insist on people being ill being positive all the time is unrealistic, not to mention puts pressure on them. Which no one needs in those circumstances. Can't imagine how it would feel to think that if I am in a bad mood or depressed or whatever, that I am causing my illness to get worse--what a huge burden.

The faith issue is another one. We don't control what God does or does not do and we can't see the whole picture the way that he does. That is where trusting God comes in--to trust him when things happen that aren't the way that WE think they should be. Am going to the funeral tomorrow for a six year old girl who fought cancer for two years--millions of prayers for her said from people all over the country, but she died anyway. Now we all have to just trust that God knows what he is doing and for our part, make her death bring about positive things. Her illness has caused a lot of healing among family members, brought about a lot of love and concern from many, many people and united them in a goal of making this little girl's life be as good as it could be.

[Gaelen]

I would like to ask, for my own benefit, what would be the best thing to say to someone in your situation?

Laurettas - however you respnd, I know that I feel best when the words are obviously meaningful and from the heart (rather than a platitude that just flies off the lips.) To me, things like these work better:
- wow, that has to be a tough place to be in
- I can only imagine how scared you are
- jeez, that sucks!
And the best one -
- is there anything you need? how can I help?

All acknowledge the patient's feelings, don't minimize the situation, and express empathy and willingness to be there. That is not just helpful - it's priceless.

And for those who won't say those things because they're NOT prepared to be there, I'd rather hear "I'm so sorry" and have the conversation end right there.

YMMV.