Treebywater

My friend Bob passed away yesterday. He gave his life in the battle against pancreatic cancer. Please pray for his wife.

Yay for Kasey!!!!!

After the Coldwater Campaign that we staged today, I was flipping through Newsweek and ran across a "Go Red" campaign ad. Clearly Heart Disease isn't JUST a women's issue, but it is getting a lot of support and awareness right now becasue of the Go Red campaign appealing to us ladies. It seems like... the whole 'women's issue' idea is appealing to folks. Was wondering if LC could grab hold of that and run with it, especially in the wake of what happened with Dana Reeves etc. Since I heard the stats on LC killing almost twice as many women per year as BC, I've thought of this as a 'women's issue.' What do you think--would that help or hurt the cause? And if the former, how do we grab it and run with it?

That wasn't such a bad response.

Beth--this post just struck me so deeply when I read it. Thank you for sharing with us. I'm so glad that you found such a treasure and so sad with you as well.

Well shoot! I mistyped in my letter and put that LC would take half as many lives as BC instead of twice as many... Sooo... I sent another one, copied the text of the original and corrected myself--guess the good news is that they heard from me TWICE!

*nodding* these are helpful thoughts.... Thanks all. I guess my struggle comes not so much from ME not thinking she was a fighter--I've had my angry grief days when I haven't thought clearly on that... but I knew my Mom. It comes more from the language... I guess it hurts to think that others might not know that about her. I had this thought as I was reading this... and it emphasized to me the fighter that Mom was... It became obvious to me that my Mom waited for me to have my husband home. He was out on the boat on a detachment when things got real bad and I had to put in a Red Cross call to get him home. Mom held on to see him get there to be with me. I know she wanted to know he was there so I Would be ok. When I thought of that, and read all the things said here already, I felt a great deal better.

Pfffft. I am UNimpressed with that response, though it may help me craft MY OWN message. Do you have an email address I could use, Ginny?

My Mama was a fighter. She had grit. She was the spunkiest, take no BS, woman that I have ever known. But my Mom's cancer took her fast. She only made it 8 months past diagnosis even with treatment. The doctor's prognosis was 22 months with treatment, 9 without. When Mom was referred to hospice we thought we'd have some good time left with her. Two days later, she was very hard to rouse, four days later she was nearly unresponsive, and for her last two days she was in a coma. Her death came on us like a freight train. When people have cancer, or die from it, it seems like there is always commentary: "He's a fighter." "He's so tenacious, I know he'll beat this." When the dying process is slow and alertness is high until the end people always attribute it to a fighting spirit. I know my Mama was a fighter. I know she was. And she fought her cancer valiantly. She was always so worried people would think she was a wimp, so she tried so hard not to complain... But her decline happened so fast--am I supposed to believe that she wasn't as tenacious as I really thought? Is an 8 month fight against the beast any less valiant than a 2 year fight or a 4 year fight? Are the last days really so telling of a person's spirit? Is the only reason a person lingers or stays alert because of their fighting constitution? I'm sure that's part of it... Did my Mom lack that, then? I think and think and think of this.... The only thing that I can think of in the whole train of thought that helps really is this thought: In a war, is the first man to be killed in the very first battle any less valiant, any less a warrior than the man who fights the whole war and dies on the last day? In my mind, a warrior is a warrior in a warrior. But the 'fighter' words still sting me. Has anybody else felt this way?

I'm so glad everything went well!

I'm so happy to "hear" from you and I think of you so often. I too am praying for you to have as much GOOD TIME and as many GOOD DAYS as possible.

Lori, I'm so glad it seemed to go well. I KNOW that you represented her in a way that will make them think. Praying over the outcome.

Of course you are remembered! I'm so sorry to hear about Claire. You were such a good friend to her.

I'm so very, very sorry.

Awesome, Awesome!!!!

I can't believe it's been two years for you... Your words also very much encouraged me--As I said elsewhere I'm afraid of getting done with the hurting. But the idea of remembering to lessen the pain... That makes sense to my heart. You always say just the thing to make me see things a new way and feel a little better.

((((Kim)))) I'm sorry it was such a hard day for you. I think some Daddy's do things differently. I know mine seemed to need to distance himself from all that happened as soon as possible. If it was a bad headspace day for me I sometimes translated that into, "I thought Dad loved Mom... what's going on?" But overall, I think in reality it hurts him SO MUCH that he can't bear the reminders of it. I'm sure your Dad does miss your Mom terribly and I'm sure he loved her right to the end and loves her still now. Maybe it just hurts him to live in that right now. ((((hugs)))) to you.

I'm so very, very sorry.

That is such a lot to have on your plate right now. I'm glad though, that you came here, and I hope we can support you through any and all of it. I don't know why it seems like life piles things on all at once... I hurt for you.

I didn't write it as a "How to" or a "This is the only way that works." I tried to make that clear with my verbage... I did write from my journey and made that clear as well. This isn't something that I'm trying to shove down people's throats, or even something written out of anger at people who didn't show up for us... But I think a lot of people don't help because they don't know what to do--just as you said, Connie... So, I wrote this on my blog to offer some suggestions based on what I've experienced. I wasn't trying to probe motives or the 'whys' of why people do or don't do the things they do. I was trying to offer guidance to those who might not know what to do--of course based on my experience. Another thing that I was trying to emphasize is that everybody IS different. That is why I think it's so important to follow the lead of the family. And for the record--I edited the part about it not helping if you only show up at the end, because I can think of instances where such help and support would have been welcomed. I don't think that is the main point of the original blog post, though. Really, this isn't about just about Mom and my missing her right now, and I didn't open it up because I wanted to talk about my feelings in those regards. It's not even me griping about people's short-comings. It's simply a collection of thoughts that I had after my experience with Mom, and now an experience as more of an 'observer' with friends of ours. If I came off as though I thought I had the answers about how all of us are supposed to act when the horror that is cancer hits us, I truly apologize.

BTW--this was aimed more at the non-primary family members/caregivers people... And I am editing to add that in general I didn't think of anyone who uses this site as the 'intended audience.' I am really speaking to folks more on the peripheral sidelines of things... Which is pretty much no one here. (So I probably shouldn't even have posted it, eh? )

(((((Tina)))) ((((Adela)))) ((((Peggy)))) (((((Everyone for whom this is a tough day)))))

Would you actually have preferred that these folks never showed at all? I tend to think that people's intentions are good, and they do want to visit and help, but they don't because they don't know what to do or what to say. Or myabe their reasons are selfish, like fear that they will cry in front of others or feel bad afterwards. Which stinks as a reason to avoid the family and the dying person, admittedly. They need to read things like your blog! In general, I think that doing something is better than nothing even if you miss the mark, BUT... those last days with my Mom I wanted to be MINE and DADS. I was willing to share only with people who had always been there for my Mom. With my friends now--my friend Jennie is watching people march in to see Bob and "chat" with him after not being there at all in the last few months. This needs to be THEIR time. So I think my point is, if you aren't close enough to the people or aren't willing to make yourself uncomfortable until things are dire, then honor the need of the family to be together instead of barging in and taking up precious moments that they need to have together. Does that clear up where I'm coming from on that?

I posted this to my blog, which is here: http://www.newwaylc.blogspot.com/ I thought I would share... g My Thoughts on How to Help When Someone You Love is Terminally Ill After going through the "last days" stuff both as a primary family member/caregiver, and now as a friend wanting to offer as much support as possible to our friends now experiencing the bittersweet time of good-bye, I want to offer my thoughts on "how to help." I want to say that I don't know everything. I've bumbled and fumbled on both sides of things. But I remember how I felt as a daughter watching her Mom slip away and I know what I've seen as a friend offering support and I have some general thoughts on how to really be of help. I think a lot of this probably applies to all stages of cancer, but it is the journey of the last stages that has caused me to do this thinking and writing. First of all--The words, "Let me know if you need anything," are truly some of the most empty words on the planet... Yes, I've used them. They are what fly out of your mouth because you really do WANT to help. The sticking point is that you have to put feet and hands to the words. Put a little action behind it. People who are dealing with terminal illness themselves or as a family member don't have the energy to call when there is a need. It's difficult to rally your mental capacities to a point when you can put things together enough to say, "Such and such said they'd help... I'll call them." So instead of saying, "Let me know if you need anything," use a little common sense and figure out what might be needed. Bring over food. Our friends Sarah and Larry brought food at least once a week when my Mom was ill. Every week we looked forward to it. We knew that there would be non-cancer centered conversation, good food, friendship, something to laugh about, and a lot of hugs the nights that they came. It was wonderful. Offer to clean--The last thing you want to do when your loved one is sick and time is limited is clean your freaking house. Laundry is a plague. Dishes are an abomination. They stand in the way of time together and they aren't very much fun on a good day. Be a physical presence--the whole way through as much as possible. Don't be afraid to call. Don't be afraid to visit, as long as everyone indicates it would be welcomed and beneficial. Nothing helps more than a hug and a shoulder to cry on. Don't wait until the 'last days' to check in and visit. I know, I know... You'll feel bad because you missed your chance and you have to take this one last time to see that person and say what needs said--NEWSFLASH--THE FAMILY needs that time. If you can be there to be of a support and it is WELCOMED by the family, then be there... but in doing so facilitate time for the family to be alone to say what THEY need to say. THE FAMILY AND THE SICK PERSON are the ones who are important, NOT YOU. To add to that, I don't think there is anything quite as offensive to me as people who don't seem to care until the drama is at it's height. Cancer sucks all the way through. Having a loved one suffering with cancer sucks all the way through. It might not play like a T.V. drama to go over after the initial diagnosis and during treatment, and to be supportive when things are normaler and even a little bit cancer-boring, but you're needed then too. If you don't show up then, I might question your lack of salt as a friend. Then there's nothing but motives to question. And from where I sat as a family member, that hurt. A lot. All this to say that sometimes it is helpful to have a hand to hold as you sit at "the watch." Sometimes what you need is a person to sit with you and your family member and be quiet, to hug you when you break down and realize that your family member can't hug you back anymore, and won't ever again. Again, follow the lead of the ones you are supporting. This is something that is important in all parts of a journey with cancer, whatever the outcome: Don't fixate on the cancer, or the prognosis. And at the same time allow people to express where they are without guilting them. Allow for venting about how much it sucks, or excitement about hair growing back after chemo. Do so by making room for them to talk about it. Do NOT make things all about cancer. There is a balance that can be found between talking about things that aren't depressing and allowing a person to talk about where they are. Be sensitive enough to find it. Usually it comes down to following the lead of the person with whom you are speaking. Know when to butt out. I suck at this sometimes. I do. I want to help so badly and I feel so much better when I am physically doing something to support people I love that I can be overbearing and TOO present. But this one really is key. Ask--"Do you want people here? Is this a help to you?" And if you get the sense that company is overwhelming for the person who is sick or for their family get the hell out. I guess what it comes down to is this--Realize that the time that a terminally ill person has left is precious. What is happening to them is all about them, and all about their family. Anything that you can do to maximize and enrich the time that person has with those closest to them is a help. Anything that takes away from that is not a help. It is, to be quite blunt, a burden. So that's the Val primer. I don't claim to know it all... but this is what I've felt from the seats that I've had in loving people dealing with this disease.

Oh Cindy... How devestating. I'm very, very sorry. Something in me wants to say, given what you told us about the doctor's expected prognosis--don't assume that you will have that time. Get everything said, do all those special things NOW. My Mom's journey with "The H word (hospice) was so much shorter than any of us expected." At the same time your Dad may blow the docs out of the water and be around for quite a while. The prognosis is STILL a guess at this point. ((((hugs)))) to you. We are here to support you.