Wednesday, February 11, 2009

Say What You Need To Say

I am sure that Dan will update everyone with respect to next steps with respect to treatment over the next day or so. It took awhile to sort out, but he will get the drain put in tomorrow to help with the fluid retention. And yes, he kinda looked like the pregnant man.

We also don’t want people to freak out if we don’t immediately post a medical update. While we use this blog as our main form of communication, we also need a little time to digest things and let our immediate families know what is going on. Calls become really tough to handle… think of it- Dan has his parents and 4 siblings, plus my parents and my brother & his family, so if we were to even spend a half on hour on the phone with each, that is 4 hours of talk time! So don’t feel bad or worried if you don’t hear from us directly… we try to keep up, but I guess that is the downside of having so many well-wishers… not enough time to connect with everyone.

A very timely article was published in the USA Today yesterday about how to talk to people with cancer & about what not to say. I know many people have stated that it’s hard for them to post on our blog because they don’t want to say the wrong thing, which we can understand. But also realize that we check the blog quite often, and for us, it’s nice because we get to read people’s thoughts without having to directly respond. I know, it’s a bit selfish! And I also think that your comments bring comfort to those who don’t see Dan very often. I know it’s really hard for family & friends to be far away & feel helpless, so I have to imagine that reading everyone’s kind words & encouraging messages gives them a boost as well.

OK, enough pontificating. Here is the link to the article

Dan is actually quoted in the sidebar of the article. I like what he says about congratulating people when they tell you they’re a cancer survivor. I was really surprised by this response when we went to the LiveStrong summit in OH this past summer. Cancer survivors, both those in & after treatment, need to be congratulated for enduring what they do, both mentally & physically.

I would also like to add my own thoughts about what not to say.

1. If someone tells you that they or someone they love has cancer, please don’t ask if they are optimistic. This happened to my friend when she was diagnosed with colon cancer. What was she supposed to say- “No, they’ve written me off”?

2. Many people ask me if I need a break. Please don’t ask me that. Yes, these are tough times, but if I needed a break spending time with Dan, my fiancĂ©, something would really be wrong. I liked watching 5 hours of tv before I met Dan, so I feel I’ve been in training for some down time. Plus, my break is going to work everyday, so I get up & out & moving every day.

3. Please don’t tell us that you’re now thankful for what you have after hearing about Dan or that you’ve realized you don’t have it so bad compared to what we are dealing with. This is a backhanded way of saying we don’t have much or we have a really bad life. Neither one of us feel this way.

Now, if you’ve said some of things, it’s not something that we dwell on AT ALL. We know everyone has good intentions. But it’s just things to keep in mind the next time a friend or co-worker might be dealing with cancer. I think we’ve said it a 1,000 times, but the best thing for us to be as normal as possible.

I recently had to explain what was happening to my new boss. I think he handled it very well. He didn't say much other than to express his concern and support. He didn't put me on the spot with respect to a lot of medical questions. He let me say what I needed to say and then we just got back to business. All in all, A+ for him. And, I actually held it together!


Lisa Auslander said...

You two owe me a game night when Danielson is feeling up to it!

Anonymous said...

Waeger Will Win

That's all I needed to say.

And Meg - nice word choice with 'pontificating' - I refer to those words as dictionary grabbers.

4 year survivor in May Waegs - congratulations.


Anonymous said...

Hey, Meg, thanks for your latest post with the do's and don't' s when responding to a cancer patient/survivor. It really does help those of us on the sidelines, witnessing the struggle of friends and family members who are in the throes of cancer. Truly it is awkward and uncomfortable to know what to say when someone tells you that they have been diagnosed with cancer--one can feel stunned and speechless . Your advice and the link to the article is helpful--we're learning and that's a good thing. So thanks for the advice. And by the way, have you thought about writing an etiquette handbook for the flunkies who say the wrong things to cancer patients? I think, it might be a success. cousin Paula

Surviving Daily said...
This comment has been removed by the author.
Surviving Daily said...

I can relate to what you say about communication-traffic-control. Good for you being up front with us about the logistics of keeping up just with immediate family. When I was in treatment it was a big challenge for my wife since I have a big family too and during chemo I was zonked. We managed some success with a family phone tree; but with groups of friends we were very lucky that they were ok with "designated contact people". She still says she would have gone crazy without those phone trees and that was 10 years ago.

So thanks again about telling us what you need from all of us. It really helps.

We keep you in our thoughts and prayers.

Jane G. said...

Dan and Meg,
I am thinking of both of you. I hadn't read Meg's account of having her car towed until today, but if the two of you can stand up to that XXXX tow-car company owner, then you have the courage (and wit--the coin revenge was amazing!)to face anything and everything.
I hope this next treatment will give you the gift of more time and more life together. You deserve the best.
I don't pray, but I believe in a greater being and I am talking to that big spirit in the sky on behalf of the two of you.
Jane (Griffith)

Anonymous said...

Hey Meg,

My mom told be about your situation and had me check out your blog. You and Dan are really an amazing team as evidenced by your awesome and fully entertaining (to read anyway) win over G and G towing. I just wanted you to know that my thoughts are with you guys.

Take care and stay strong.

-Erin Birgfeld

hughesd2000 said...

Definitely hard to find the right words sometimes and sometimes words just don't really matter. Like you said before and it has stuck with me, "you may not always know what to say, but just say something." or now "say what you need to say". And that I will! Just wanted you to know that I am thinking about you and continually praying for many things:
1) for you to find the next treatment that is right for you
2) that the pain and discomfort that you are feeling lessens so you are able to get out there and do the things you want to do.
3)that you both find strength and comfort from each other through this next phase.
4)that you both can feel all the love, support and prayers that are being sent your way.
We are all here to help you up this next mountain.
Dana and the Haxton Clan

Brooke said...

Speaking of selfish...can I vent about Hopkins a little? I have been going up there recently for my own cancer issues (melanoma) and, seriously, if one more person asks me if I've ever been seriously sunburned I'm going to whip out the can of Cancer Bitch on them. I want to ask them if they ask everyone who has lung cancer if they have a history of smoking. IT DOESN'T MATTER AT THIS POINT! WE'VE GOT CANCER. ALREADY. Thanks for making me feel like my poor choices at the age of 16 gave me cancer, when you don't really have an effing clue as to why I've had cancer more than once and I'm 34...

Do you all have this experience when you go up to Hopkins? You don't have to replay, I'm just venting...the care I get there is great, it's just after 15 years of hearing the same questions from residents I guess I'm a little over it. They're big into stickers on the patient chart up there...maybe I'll bring along my own stickers with the answers to the questions each time...

Anonymous said...


Wearing my green bracelet and thinking positive for you guys.

--Becky Arnold

Anonymous said...

For all you golfers out there:
From living and golfing in the United States it is our right and privilege to cheer emphatically (serge is that a "dictionary grabber?")for the US Ryder Cup Team and boooo for the Europeans, especially Colin Montgomery. If you've ever watched the Ryder Cup you know what I'm talking about. Colin Montgomery is probably the most hated Euro in golf and every two years the US fans will BOOO him whole heartedly. Especially in 2010 because he will be the captain of the European squad. Next year I probably won't boo Monty as loud.
Colin's mother died of lung cancer in 1991 and since then he set up a foundation in her name and is planning on funding a cancer center in Scotland. Here is the link.
Sometimes on TV it is hard to see what people really are all about.

Hope everything goes well with the procedure today. WWW

-Tom and Mary

Michael said...

Hey Dan...I just wanted to add to what Mary wrote. Customarily, my "WAEGER CUP" golf hat, which you gave me some years ago, occupies a place of honor on top of a bookcase near the dart board in our pool room (it occasionally gets a ricocheting dart stuck in it, but no offense intended). The hat itself has never actually seen a golf course (and a few of my golfing buddies wish they could say the same for me). In fact the hat is revered like a monument and is located near an Eagles hat that was autographed by Ron Jaworski (the Eagles are a pro football team located in Philadelphia).In any case, unbeknownst to me, the revered hat was recently pressed into service collecting the bets involved in a hotly contested pool match in which my octogenarian mother ultimately prevailed and made-off (like Bernie) with the winnings (a whopping $8).

In the meantime, I saw your dad at church on Sunday, and he said you'd had a bit of a setback, and I wanted you to know that you are often in my thoughts and prayers. Stop over some time when you're in the neighborhood and I'll let you try on my Eagles hat (it's adjustable) and maybe you can teach a few golf tricks. Be well, my friend...-Mike Kelliher

Tyler said...

I thought the last post was great. It's nice that you are "straight up" and tell us what to say and what not to say. That's just the way I like it... you can ask Angie.

Keep up the good work, keep up the blogging, and keep on "winning!"

I'm keeping you in my prayers, Dan.



Heather Allen said...

Hey Dan,
We were thinking of you today. Mom and Dad send their love to you two and the rest of the family. Don't be surprised if you get an email from them sometime soon. (I didn't realize that they didn't already have your email address, so I gave it to them. In fact I had to give them everybody's email addresses.). Anyways, just wanted to let you know that we're thinking about you and hope that everything went well for you today (which I'm sure they did!)
The coins to the towing company was total GENIUS! I love that you guys thought to pour coke over them! Hillarious and so deserved!

Anne Willis said...

People say the strangest things. Granted it's not always easy to react to cancer, but sometimes it's just ridiculous. I agree on #3 - except I think it's fine if it makes people appreciate their life. I get annoyed when people comment about feeling bad because they didn't have to go through anything so major in their life. As if it's a contest to see who's worse off and I'm somehow making them feel guilty for not having the worst life ever.

And don't forget me on game night.

Anonymous said...

Just wanted to wish you both a very Happy Valentines day with lots of hugs and kisses!

We love you!

Melissa & Chris

The Urbans said...

Danny & Meg,

Glad we got to be there yesterday at Hopkins and hope you are feeling better now with the drain and hopefully can keep some food down and gain some weight. I thought the USA Today article was great and many people do need to know what to say (or not say).
Love, Patrice, James & the girls

Anonymous said...

Dan and Meg, just want to wish you a happy valentines day! I hope you can enjoy some chocolate, maybe a movie and just some fun together time. My Maggie was quite excited for the V party at school... she woke me up at 12:15 last night hoping it wasn't too early to wake up!

Dan, I hope that everything went ok at the hospital yesterday and you'll start feeling more comfortable! Meg, I'm glad to hear the conversation with your new boss went well. I'm sure that was a bit of a relief. I'm amazed by both of you... especially your strength and determination!! Thinking of you and you're always in my prayers! Katie