What NOT to say

[jumptheshadow]

Has somebody just told you that they or one of their loved ones has Stage 4 cancer?

Please don't say the first thing that flies through your mind.

Blurting out, "Why didn't you get a mammogram?" or "Why didn't you send her for a mammogram?" is NOT what the person wants to hear. Believe me, the thought has already passed through their minds, maybe a thousand times. The only way they will be able to stay sane and strong is if they banish it. If they want to survive, they are working on staying in the moment, keeping a positive attitude and getting through the pain and discomfort of treatment. They are savoring those rich moments when they are able to forget about all of it and laugh. Please don't make their task more difficult with your concern.

Perhaps, like my partner, the person was still a relatively young woman. Perhaps she had skipped three years between mammograms while still getting her physical exams. Maybe she had lost her gynecologist due to an insurance switch and her GP hadn't ordered a mammogram because she was always hearty and humorous and strong.

Please don't question if a person with Stage 4 cancer wants to keep working. It's her choice. If she decides to keep the routine she is used to, with support from her colleagues, then don't discourage her. She gets to make her own decisions. You're not in her shoes.

And by the way, a person's work and goals may actually help them survive. I have a friend who was first diagnosed with metastatic cancer in 1998. He was told he had a year to live. Well, all these years later and with thousands of work miles logged, he is still going. He actually thought he was dying two weeks ago but he is back on his feet now. He is hosting a cocktail party soon. I treasure this man. He has been a great teacher for me.

[Uben]

1. Thanks for saying this

I know it's hard to come up with anything to say when one finds out a friend or loved one has cancer, but some people speak before they think. Carol had been getting mammograms yearly before her diagnosis in 2002, but had quit because every time she had one, they would always call her back in because she had fibrocystic breast disease and they thought there might be something hiding behind the lumps. Everytime, for years, so she stopped having mammograms annually.

Since she had a double radical mastectomy in 2002, she had no breasts to mammogram, but recurred with stage four breast cancer nine years later.

[Irishonly]

3. I am in awe of you

I am planning to try to go to a Relay for Life this spring/summer. I will be lighting a luminari for Carol and one for everyone here fighting. It is a beautiful ceremony and I do ok until they bring the kids out. I them become a sobbing basket case. You are such an inspiration to us all.

[jumptheshadow]

5. Thank you so much for your kind words

Last edited Wed Mar 7, 2012, 11:05 AM - Edit history (1)

You are an inspiration to me. Your comments mean so much.

Our struggle with breast cancer-related issues started with me in 2000. "This is a cardinal sign for breast cancer!" my GP shouted when I told him I had been bleeding from one breast. A highly recommended doctor did a biopsy that put me in the hospital for four days with a staph infection. Worse still, even though the biopsy showed me as clear, she didn't pursue the source of the bleeding, despite the fact that the radiologist urged me to talk to her about it (and I did).

I transferred to another wonderful doctor. She immediately fixed the bleeding and had a plastic surgeon reconstruct my breast, which had been ripped open due to the infection and had healed without sutures.

From then on, like Carol, I was on the "high alert" list, which resulted in fairly frequent biopsies for a while. I am deeply grateful for the follow-up. The process is emotionally and physically draining, however. My cancer center is quite posh, and they provide a very supportive physical environment for their patients. It's still difficult to sit in a roomful of tense women who know they might get grave news at any minute. It's also tough to know that you might be the next person to draw the roulette bullet. Fibrocystic disease runs in my mother's family, so I guess it is my lot in life. It was wonderful news, however, when I was put on a once-a-year mammogram schedule.

Betty spoiled and supported me through all of this. I cannot be too emphatic in stressing how strong she is. We noticed some things last year -- she got greenish circles around her eyes, her breath was sour and she was tired -- but we attributed them to an especially demanding time at work. As I said, her physical exam was fine and her bloodwork didn't trigger any alerts. I was so shocked when I saw her X-rays. They were far different from mine and I knew right away we were in a life-changing situation.

[Irishonly]

2. Thanks for posting this, Jump

I am still amazed at how much pain people can cause because they don't think. My breast cancer didn't show up in a mammogram. I has had the biospy and knew I had cancer when I got the you don't have breast cancer letter from my mammogram. I was told a sonogram probaly not have picked it up either. My right breast was all tumor and I also had never missed a mammogram.

People need to understand the person fighting the cancer and those who love her/him are doing what they can to beat it and to also get through one day at a time. I couldn't have worked although I wanted to. My cousin missed very little work. Everyone is different and people forget the patient and their loved ones know what is best for them.

The worst thing I was ever told I was lucky that it was only breast cancer and it was my MIL that told me that. It cut through my heart like a knife and our relationship has never been the same. There is no "only" cancer. All cancer is terrible and it is always in the back of your mind. The five year survivor rate is only a number as is the stage. A number cannot define who we are. Our fight defines us.

I have been in bad shape for quite a while. I am starting to feel like a humman again and am starting to practice Reiki again. When I am a little stronger I will email you. I am investigating the long distance with crystals. I am past the dubious stage now and am starting to think it's a good thing.

Keep strong. You may not know it yet but you are turning into a great teacher yourself. You stay strong and we will be here.

[jumptheshadow]

6. Hi Irish

I'm so happy you are feeling better. And thank you for your spot-on comments. You are so good at support. You always know the right thing to say. I believe you are helping many people, and probably do good for individuals who may never post.

It is very true that how people react to the news defines them in your eyes for probably the rest of your life. At least it did for me. There are a couple of people who stepped right up to the plate and have been consistently wise and kind. I would do almost anything for them. While I'm not at the point of cutting anybody off, I could well get there with one or two people.

One woman blurted out the: "Why didn't you get her a mammogram." Then she realized the impact of her words. She has been doing everything possible since then to be solid and steady and make me laugh. She has a blunt personality and has annoyed me in the past. Strangely, the statement made me more immune to her occasional lack of diplomacy and easier for me to overlook the inelegant train of words that sometimes come out of her mouth. She is a good person at the core. I can see that.

One of the problems is that we're getting advice from all quarters. We know that people are concerned, but Betty knows her own capabilities quite well. The thing that bothers her the most is all the well-intentioned but unsolicited advice. She is feeling much better now that her ligament tear has healed. She has been a respected workhorse and kind soul at her job and her long-time colleagues are very supportive of her. Where once she would lug water bottle replacements in while the guys would watch, that situation is never happening now nor are they leaving unfinished jobs to lag to her shift.

We wish with all our hearts that there was universal healthcare, though. That would be the single thing that would provide us with more flexibility and greater peace of mind.

[Irishonly]

10. Thanks

Universal health care would cure a world filled with illness and I really hope we see it one day soon.

You and Betty know what is right for Betty and for you too. I know sometimes you think your head will explode so I guess I would say is to smile and take advice you want and ignore the rest. Maybe you can just look at it that both of you are loved and people want to help. I smile when I read your posts. The both of you are very special and you are also teaching many others.

[tavalon]

14. I need to learn not to be condescending to people who say stupid things

I know they don't know what the fuck to say, but damn it's frustrating to hear that crap.

The best thing anyone has said is, "Damn, you've joined a club that no one wants to join. I'm sorry and please let me know if I can do anything for you". I'm fairly sure her mother's battle with stage 4 breast cancer has nothing to do with it. Actually, that's my gallows humor. I know it has everything to do with it.

[Po_d Mainiac]

15. Ever got the "Hang in there" thingy?

My response has become automatic. "Weren't those the famous last words spoken to Nathan Hale?"

[tavalon]

16. Who?

[Po_d Mainiac]

17. Revolutionary War history

http://www.connecticutsar.org/patriots/hale_nathan.htm

[Betty88]

4. I have the best wife

love you baby

[jumptheshadow]

7. No, you are the best wife :)

I will love you forever.

[maddezmom]

8. thank you for posting this and all the other responses...this would make a perfect pinned post

as others could continue to add their own stories.

[Irishonly]

9. I saw your post and pinned it

I thought it was a great idea. I think you could have pinned it also. that super powers tab scares me.

[Nay]

11. You know what else not to say to a close relative w a life-threatening disease? "YOU'LL BE FINE."

Maybe I will and maybe I won't, for one thing. For another thing, if you say that to me, it feels to me as if you are abruptly relieving yourself of any responsibility to be supportive or to adapt to a new reality; I am forced to adapt to my new reality, but you have declared that you're going to go on your merry way without a care in the world. Thanks a lot.

[tavalon]

13. Or point out that the biopsy being scheduled for a month out must mean it's okay

That just means there is a scheduling/doctor non-communication. He's heading to another doctor but really it's the disjointed way that clinic is run, not the severity of the cancer that determined our month of hell.

[tavalon]

12. Yes, yes and yes

My hubby went two years without telling me about his bleeding because he was afraid it might be an STD or an STI or whatever the current abbreviation is. Within a two week period we have had to deal with infidelity and cancer. I would never, ever tell him "you should've........." He didn't know and he's busy beating himself up enough for both of us. I keep telling him he couldn't have known and that it's water under the bridge. And it is. I'm still angry, but not at him. I'm angry that all people ever mention are prostate, lung and colon cancer. I'm angry that hardly any of us ever hear about bladder cancer until it strikes.

When is the last time you heard about bladder cancer? I hadn't and I'm a nurse. Now granted, oncology isn't my field of expertise (it is now, after a marathon education). Bladder cancer is the fourth leading cancer in men. We can talk about the colon but not the bladder? What the fuck is that about?

Public Service Announcement. If you are a man over forty and have bleeding from your urethra. Go to a doctor immediately. If your insurance allows, skip the middle man and go straight to a urologist. if it is a UTI, take your meds and thank your lucky stars.

[chrismiller8888]

18. Thank you

Thank you for this - excellent!

[Solly Mack]

19. K&R

[dmr]

20. Unpainted by author's request

hugs to everyone.

[Puzzledtraveller]

21. My mom's doctor ignored her warning signs

and when that doctor had left the practice and she was given a new doctor the new doctor was appalled that my mom had not seen a specialist. My mom was unsure that she had the option to see one, she believed it her doctors prerogative and trusted her. We do not know yet but that may have very well cost her her life. My mom is very passive and non confrontational so I know she already feels bad for not pressing the issue but yesterday while we were doing a three way call my older brother won't get off they why didn't they send you to a specialist and how come you didn't ask for one. If I could have strangled him through the phone I would have.