Personally, since the first two sets of post op CT scans after the lung mets were found, and before I started on the drug that got rid of the lung mets, I haven't been nervous to get scans. I've felt confident that they would be getting better after the one taken after Arimidex was deemed "spectacular" by my onc. I do know that at some time in the future...how far in the future is anybodys' guess, the scans won't be good. That's the day that my onc had once counseled me to get my emotional reserves built back up for.
I do my best to not project into the future when that day comes. Why pay interest on trouble before it comes due, as Ben Franklin said. I know that these may be the "golden years" for my post-diagnosis life, and I'm doing my best to get strong enough to enjoy them and to get as much of what I love to do back into my life.

Sent by Nancy K. Clark | 7:23 AM ET | 03-28-2007

http://www.cctrust.org.uk/article1.htm
Like she says, "I have cancer, but I also have feelings".

This is a link to an article by Kate Carr, from the same website as the Peter Harvey one. Unfortunately kate died of breast cancer mets about 5 yrs after her original dx.

Sent by JJ | 7:46 AM ET | 03-28-2007

I COULD GET HIT BY A BUS TOO Copyright 1995 Susan Frisius

"You never know when you're going to die, after all, I could get hit by a bus."

Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.

"You're lucky you have a treatable disease."

Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can
do," but losing pieces of my body, having a radiation machine set off a
nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.

"You'll be fine because you have a great attitude."

If attitude really matters, why did I get cancer in the first place? Or
does attitude only matter after you get cancer? Right now my attitude
about cancer is lousy. So what does that mean?

"Don't worry, if your time's not up, it's not up."

If that's true, why did I bother with the surgery? Should I cancel the
rest of my treatments? Do doctors perform surgery and give chemo and
radiation for no good reason? After all, "if my time's up," treatments
won't help.

"I've read that anger and stress lead to cancer."

Great! Now I caused my own cancer.

"You should simplify your life."

It's pretty simple now, all I seem to do is go to medical appointments.

"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."

The person who tells me this knows I only eat natural foods, cook
everything from scratch, don't eat junk foods and rarely eat meat. "You eat white pasta," she says when she sees my puzzled look. Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label
I wouldn't now have cancer?

One person says, "If you really want to live, you will. Just never give
up. When people give up, they die."

If I were hit and killed by a bus would she think I died because
I gave up?

Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."

Most conversations end with "call if you need anything." I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.

Why do intelligent and sensitive people who care about me say such
things? Can they really believe I'm responsible both for my cancer and
the outcome of my treatments?

I think these people want to believe cancers are caused by a person's
poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."

I have no doubt that everyone I talked to about my cancer was concerned
about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."

I'm sure friends would have been happy to help if I had called them and
asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.

So what would help me while I'm being treated for cancer?

Drop in or call. The only way you'll know what I need is if you keep in
touch. Remember, if I'm out in the community, I'm well enough to be out.
It's when you don't see me that I need your support.

Don't wait for me or my immediate family to ask you for help. It takes
too much energy and I don't like admitting I can no longer cope with
everyday living. When you want to help, don't ask what I need, just do
it. Bring me a meal (white pasta is fine), wash my floors while I sleep,
take my children to a movie, get the oil changed in my car, pick up a
few vegetables for me at a farm stand, change a burned out light bulb,
take my empty yogurt container off the coffee table and throw it out.

Don't minimize the illness that scrambles my life by telling me about
simple causes and self cures. Everything I've held important has been
touched by it - my ability to raise my children, my work, my independence,
my social life.

Don't let your fear of hearing about cancer keep you away. While cancer
has become a big part of my life, it's not my whole existence and I am
able to converse on other subjects.

Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.

If I let you know your company is too much for me at the time, come
back. If I don't answer the phone, call again. I need to know I can
count on you because I'm temporarily unable to count on myself.

If you're feeling helpless because someone you know has cancer, don't.
Take them a meal and eat it with them. Talk to them as you wash their
dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.

Both of you will feel better when you take action.

Sent by JJ | 7:50 AM ET | 03-28-2007

Dear Leroy: I pray your tests come back NED. My husband was on his 'three month break' as we called it and after two months, he started feeling weak for a couple of days, then he fell and didn't have the strength to get up. We went to the emergency room, a CT of his brain was done and they found multiply 'lesions' - "peppered" thru his brain. He is now on his 8th whole brain radiation treatment and has developed large nodes in his neck. They did a scan and found the cancer is back (small cell lung cancer) with vengeance. We are now 'awaiting' the new game plan. The whole brain radiation is being done in hospital, due to him not being able to get around. Even tho you know, when it does come back - it's a whole new set of rules and a new game plan.
You are in our prayers.
Many Blessings My friend.

Sent by Joan | 8:09 AM ET | 03-28-2007

I hope all the tumors are DEAD and gone! Have been thinking of you Leroy, with the news of Elizabeth Edwards and Tony Snow. You are so right about not having caused your cancer. Some people have lousy luck. I am praying your MRI results will show no tumors.

Sent by Maureen J. Patton | 8:32 AM ET | 03-28-2007

After my wife's next set of scans the plan is to have glorious cocktails, then keep up the inebriation until the results call.

Sent by Art johnston | 9:02 AM ET | 03-28-2007

We seem to have all lapsed into a state of hysteria. We all need to calm down and remember the days before the 'announcments', when Mrs. Edwards and Tony Snow were still out there doing their jobs and living their lives "cancer free." I admit I am not having a good week either. I had a chemo session last Friday. I am down to only one more treatment. I asked my Dr. on Friday if he was sue he only needed to do 5 months of treatments. He said we can do more if you like.:) I don't know if I will be able to just sit around and wait for the next blood test, the next MRI or scan, and not be hysterical. Maybe we all need to step back, take a deep breath and remember that we were looking forward and we were positive before the terrible news last week. My dear husband and sister have been sending me articles and links every day on the positive results of cancer treament. My frineds call and tell me about their friends who have beat cancer. So dear frineds...let's just take a collective deep breath and calm down. Leroy...please give us some good news. I don't think your new family could bear something happening to you right now. We need your positive attitude and your grace to get us through. Good luck and God Bless you.

Sent by Patti | 9:19 AM ET | 03-28-2007

This is for JJ. I have printed out your response and have it hanging in my office. You have summarized my experiences very well. Thank you.

Sent by Lisa | 9:46 AM ET | 03-28-2007

JJ, thank you so much for taking the time to type out your entry for today!!! i am laughing and crying at the same time reading it ! i, too will print this out and post it forever on my door! thank you to all my fellow bloggers. on this beautiful spring day here in the north east i relish all that life has to offer ..today!

Sent by marianne dalton | 10:12 AM ET | 03-28-2007

Kudos definately to JJ - her comments directly speaks to the experience and how others treat cancer patients. And I agree with you, Leroy. Reoccurance is not as scary to me as it once was - I was so terrified of it after my first round of chemo ended - I really didn't know how I'd go on with it hovering over me. But somehow I worked my way through it - mainly by staring at it face on and getting on with my life - and here I am in the middle of my first reoccurance and IT (cancer) just is a part of my life. Not always the most comfortabe or pleasant but IT's here. But I go on -taking one day at a time. I'll be thinking of you Leroy.

Sent by Martha | 10:25 AM ET | 03-28-2007

Dear Leroy and group, WE all need to take a one minute time out! Lets focus on something beside the obvious. This morning I saw the first Robin of spring on my lawn. Look out your window and picture yourself walking your kid to school. Remember the last date you had with your spouse before you had cancer. Please everybody, take one minute to smile.it,s hard but lets all try.

Sent by Ron | 10:32 AM ET | 03-28-2007

This is my first comment, but I have been reading for a long time. JJ--Thanks! I needed that laugh/cry, perhaps more than I knew.

Leroy--Hope you already got good news about your MRI. God bless you!

Sent by BP | 10:53 AM ET | 03-28-2007

JJ: I was telling my sister that I needed to go buy a mop and try and clean my filthy kitchen floor :) Maybe I can sit down and do it. You write so beautifully and I'm sure it is a relection of how you live your life. We are all here for you. Thank you for your beautiful thoughts...I too have printed it and put in on my refrigerator....(my dirty refrigerator... giggles)

Sent by Patti | 11:03 AM ET | 03-28-2007

JJ I loved that post. Leroy, hoping nothing shows up on those scans. I am, as far as anyone can tell me, cancer free after treatment but I've had more than one recurrence scare from an ambiguous scan result, some of which resulted in additional biopsies. I try to put the scans out of my mind until I hear the results. if they show my cancer has recurred I guess I will deal with it then. Even when I went through the scares I was pretty good about putting the possibility out of my mind until I heard somehting definitive. This may mean I'm just really good at denial but it always seems to me that, if the cancer recurs, I will have to give it enough of my life (and already HAVE given a lot through a year of treatment), I don't want to waste moments worrying about it before I have to.

Sent by NR | 11:04 AM ET | 03-28-2007

JJ - You are a teacher, having been shanghaied into the cancer school. People act out of what they know and feel, and when cancer affects someone in their lives, the questions start flying, often very difficult ones. Just in this blog, we read widely varying descriptions of what to do when someone you know has cancer, how to respond, what is welcome, and what diminishes a survivor's resiliance. To offer yourself is a big risk...the last thing a friend wants to do is make matters worse. It is amazing and rare to have someone in your life who's instinct is unerringly right on when it comes to offering help, action, comfort.
The rest of us must learn, though, and that learning sometimes comes at the expense of the person dealing with the cancer and their family. My husband (dealing with stage IV lung cancer) and I try to look beyond the rare clumsiness or ignorance of someone's attempts to assist us, and just receive the good will that causes them to reach out past their own fear, sorrow, shyness.
We also have had to develop our own capacity to identify what we need and how to ask for help. The article you sent about things people can do to help is so rich and useful! Small things to big things, all with positive effect.
We are all teachers, we are all students.
Ceese Stickles

Sent by Ceese Stickles | 11:26 AM ET | 03-28-2007

I read this blog every day, Leroy, and appreciate you sharing your life with us. I hope there are no new tumors!

I also appreciate reading everyone's comments and today I would like to thank JJ in particular for taking the time to write such clarifying comments! My thoughts and prayers are with you but, most importantly, I will follow my instincts and will continue to do the things I do for my friend without questioning whether or not I'm imposing. I'll rely on her to let me know that. Thanks, again, JJ.

Sent by Molly | 11:28 AM ET | 03-28-2007

For JJ. As someone who is lucky enough to not have cancer I want to thank you for printing the Susan Frisius article. It should be on everyones mirror to read in the morning. I am sending it on to a nurse friend who deals with cancer patients.
Thank you for letting us all know your feelings and the suggestions on how to help.

Sent by Sondra | 11:37 AM ET | 03-28-2007

Leroy,

I haven't got anything particularly pithy to say today, but wanted to weigh in and let you know I will be hoping for the best and if the news isn't good, you have a whole raft of people who are going to support you all the way.

PS JJ - Loved your post! I think people are awed and cowed by cancer and don't know how to respond. Hey, folks, just take a chance that your overture might be rejected and go for it! You have a lot less to lose than the person you are calling.

Sent by Diana Kitch | 11:46 AM ET | 03-28-2007

Maybe I've been luckier than most, but while Terry was dying, and even continuing to today, I've had to almost fight people off with sticks who want to help out. One friend in North Carolina even called my local Domino's, gave them his credit card and had a pizza delivered to my house because he was concerned that I may not be eating.

Over the last 6 weeks I've become adept at saying "no thanks, I'd rather be alone" or "not today, but let me call you back."

Sent by Bruce | 12:16 PM ET | 03-28-2007

Cross that bridge if and when you come to it, Leroy. In the meantime, live each day! Best wishes to you.

Sent by Art Ritter | 3:35 PM ET | 03-28-2007

JJ, I was going to write in yesterday and thank you for your wise comments that you posted and now today you topped everything with that great article.

Thanks

Sent by Susan | 4:17 PM ET | 03-28-2007

Still scared after all these years....I, too, am a sort of veteran. But after having a chest xray this morning I got a late in the day call that I need to see my oncologist tomorrow! Yeah, I'm scared!

Sent by Cindy H. | 6:48 PM ET | 03-28-2007

Leroy - savor the time while you are tumor free and worry about the chance of recurrence later (or maybe never if you're fortunate). Sure, the 800-pound gorilla of recurrence is always going to be in the room, but you don't need to acknowledge his presence yet.

JJ - thanks so much for sharing the Susan Frisius piece. It captures a lot of our thoughts on the things that people say to us in an effort to comfort us. It almost invites a follow-up piece for the rest of us on things people have said to us to make us feel better that somehow didn't quite work. I've heard this one a few times now...."You know, things could be worse....". Somehow, I didn't feel reassured that could be worse for me.

Sent by Bob Maimone | 7:07 PM ET | 03-28-2007

Dear Leroy,
Thank you for printing my comments yesterday. Thank you for sharing how you are feeling and doing. I pray your test results are good but even if they are not you will go on like we all do. I like what JJ said and some others too. We must remember that we did not cause this disease in any way. Positive thinking is great but the book "Secrets" is misleading and disturbing. I have struggled with thinking I caused my cancer and now understand that I did not. I agonize over every test but just want to try to live life to it's fullest now and cope with whatever comes along on that day. Leroy, you are better than a support group and I hope that you find comfort in sharing your thoughts and the response you receive. GOD BLESS YOU.

Sent by Vicki | 7:26 PM ET | 03-28-2007

JJ, thank you so much for that post. All this time I thought I was just ungrateful for thinking some of those things. Now I know......a lot of us feel that way. The honesty is refreshing.

Sent by patricia | 8:28 PM ET | 03-28-2007

hi leroy- i know completely what you're talking about when you speak of "getting ready" for bad news- living in naive land and getting slapped upside the head with bad news is TOO much of a shock time after time-
but i wanted you to know that i hope you get GOOD news this time- you deserve it !!!
thanks again for all these posts- i don't know why, but it's a real comfort to me to read them daily after i get done with all my email business- there is something very centering about your posts- thanks-
alice williams, mother of lexie

Sent by alice williams | 8:58 PM ET | 03-28-2007

I'm hoping you get good news tomorrow!

Sent by Grace T | 12:48 AM ET | 03-29-2007

Thanks for sending your post JJ. I have heard my wife echo many of the things in the article as she has gone through her treatments. I have sent her a copy of your post.

It seems like in the last few weeks you couldn't turn the TV on without hearing about cancer. CBS News last night devoted most of the broadcast to cancer. The news of Elizabeth Edwards and Tony Snow have hit me pretty hard. My wife just finished her last chemo for breast cancer, and my father died of colon/liver cancer at 53.

Sent by Jeff Kash | 1:10 AM ET | 03-29-2007