On death and dying....surviving grief - Page 2

Colleens_Husband · 05-07-2008, 08:44 AM

Dear Friends:

Perhaps I am not the right person to bring this up as I have only 34 posts on this site but I would like to open a dialogue on what grief and loss can do to this community.

First off, grief is a necessary part of life. It is completely appropriate to feel grief when we lost so many community members so quickly. Everybody should take some time to reflect on what the losses means to us.

I hope the events of the last few days brings everybody together in this community, as opposed to drifting away from each other. Many people will feel pain at the loss of our friends and will begin to fade away from this community in order to protect themselves from even more pain which will surely come. Sometimes the best way to get through psychic pain is to lean into the pain. Go towards the pain instead of away from it.

I would like to suggest that coming towards each other in this community may be a better and healthier way to deal with the emotions of loss. I know it is counter-intuitive, but instead of having a quieter community with less posting, maybe you are better off becoming more active here.

I belong to another web community for an extremely rare disease called Guillain-Barre' Syndrome (GBS) which I was a victim of and which left me paralyzed for several months. We had several deaths in the community over the course of a week or so and it left the community drained and emotionally exhausted. Nobody went to the chat room anymore and more and more threads were posted but were unanswered. For almost a year, our community fell apart. We were all awakened back into action when the Guillain Barre' International Foundation found that there was a slight increase in the death rate from GBS during the year that we took off. The increase in the death rate shocked us back into action.

We never knew that we were making a real and positive difference. Our suicide prevention programs were effective. Our calls to get immediate medical service did prompt people to get to the hospital before it was too late. And our pleas for patients to be their own medical advocates did result in better medical care for the victims of GBS.

All of you are serving an extremely important function. I came to this site for knowledge so that I could help my wife would make the wisest and soundest medical decisions she could. I got that here in the form of first hand knowledge from people who actually lived through this ordeal. You have really made a difference.

I sort of promised myself that I wouldn't get involved in this community and just be a lurker, but I am a sucker for brave people and people of character. I hope all of you renew your efforts here. What you do here is important.

Lee

Andrea Barnett Budin · 05-08-2008, 12:10 PM

I'M MOVING THIS POST OF MINE FROM JEAN'S CANCERLAND THREAD. I'm not sure y'all saw it and I think it's worth your contemplation. Sent with LOVE...

I have been trying to process all that has happened this week. We have lost 3 beautiful, wonderful Spirits who have graced this board for a long while. These are Sisters we have come to know and have felt so blessed to have them in our lives. We must all remember to say THANK YOU for giving us this gift! Out of our cancer experience come the most amazing bittersweet realizations and relationships.

We grieve now, as a virtual community (as Flori has wisely noted). Our hearts go out to the families of our Kate, Michelle and Carol! We are struck by the unspeakable sadness of having a loved one rent away. We understand on a level that is incomparable, as we live in Cancerland...

May their families know that we have felt very much a part of these brave warriors' journey. We have done our best to support and inspire them, as they have with all of us. There simply is no place like our unique community. We share a bond that runs deep, at our core. We love these Sisters in a most profound way.

I have been silent for a bit, reaching for some way to deal with so much that is truly mournful to me. I have chosen not to succumb to the temptation to completely identify with these great ladies who have lost their fight for life. It is easy to say -- When will it be my turn? Too easy. I cannot allow fear to rule my life.

My dearest friend Sue was at times my staunchest supporter. Sometimes it felt as if she was actually a blood Sister whose heart beat in rhythm with mine. Other times she was like a mother who wanted to protect and shelter me. And I hope and believe she felt the same about me. I adored her.

Sue had a rare stomach cancer and fought for nearly 15 years. She went through numerous chemotherapies, transfusions, surgeries, PET scans (and you know the drill!). In time, she was in constant pain and no longer wanted to live. You know for a long while I tried to inspire her not to give up, to try Reiki, supplements, whatever I could think of. Finally, I accepted that in the end it was her life and I had to respect her decisions. This is agonizing when you love someone with all your heart. But I did it. For her.

Sue told me emphatically and repeatedly to listen carefully -- WHAT I HAVE HAS NOTHING TO DO WITH YOU. YOU ARE GOING TO LIVE A VERY LONG TIME, ENJOY YOUR FAMILY, FINISH YOUR BOOK. YOU HAVE A LOT OF LIVING YET TO DO. When she died a few years ago I was devastated. But I remembered her oft told words. And I offer the same to all of you right now, my Sisters on this board.

We all know that though we each have been dx with bc, that we are HER2+, each of our cancers is different. There are so very many variables. We cannot compare apples to oranges. I had the roughest of times with Taxotere. It brought me to my knees. While others had milder side effects. Every tx, every drug we ingest effects one differently than another. This is what worked for my diarrhea, constipation, nausea, and so on. We try it and find, Yes, this is great. Or, No it did nothing for me.

So my point is that we must not look at this last week full of the worst of news and think the worst for ourselves. We must not compare what we have with what they (our Kate, Michelle and Carol) had. Each of us in unique. Each cancer is unlike any other. Each reaction and/or result differs.

And, truth be told, the greatest tribute to these valiant women is to consciously choose to live each day with zest and gratitude, love and joy. That is what they would want for us. To hate this disease called cancer, or to rail at the unfairness of it, does no good and in fact does terrible harm to our very Souls.

These fallen soldiers were killed in this war and our hearts are nearly broken that such fine and gentle Spirits have passed on (to what I believe is Heaven, or the Spiritual Realm). I know they suffer no more, that they are at peace and with God. That their loved ones will one day see them and be united with them again.

At the same time as I feel a burgeoning heaviness in my chest over the loss to this world, I will wake up tomorrow, remember them with great fondness and extraordinary admiration and then I will say, Thank you for this day. I will say it before I get out of bed. I will say it as my right foot touches the floor. I will say it as my left foot touches the floor. As I brush my teeth. And by the time I am clean, coifed, made up, dressed and ready to face the world I will have said THANK YOU 100 times.

It is now up to us to fight on, in their names, in their honor. I know it is what they would wish for us. Not to give in, never to give up. They each said it in a thousand ways and I for one will never forget the beauty of their natures. I will embrace the message and carry on... Just some things for you to think about, that I pray will ease your pain my sweet Sisters. I just felt I had to share... With big (cyber) hugs I wish I could deliver in person to each and every one of you...
Andi

SoCalGal · 05-08-2008, 12:25 PM

Great post Andi b-b. Great words of wisdom. I needed that. Lee, too. I love that you post as Colleen's husband. Always makes me smile. It's such a nice statement on your support of her

. Thanks for sharing about GBS. You are right - it's most important for us to share-share-and share some more.

tricia keegan · 05-08-2008, 02:40 PM

I was'nt going to drag up the past week again but feel it may be appropiate on this thread to mention something that made me feel a little better about this week.
When I went to Carols funeral Monday she had written a letter to be read out, one of the things she said is that she was happy her children and hubby were settled and going to be okay and that she was going to a pain free place to wait for them. She said she had no fear whatsoever and only relief she had managed to stay alive and one step ahead of cancer for so long.
The honesty of the those words touched me and her sister in law later told me Carol herself had decided (having taken her xeloda Fri am)that she was tired and would'nt take it again. Two hours later she had passed peacefully in her sleep. I really believe she made the decision to stop not that the disease had taken her and that sheer will and determination alone had kept her going for so long.
Sorry this is long, but it made me accept all this a little easier this week and thought maybe it may help some one else too.
Andi, wonderful post and amazing words which do indeed help also..

PinkGirl · 05-08-2008, 05:44 PM

This is an excellent thread. Thank you Flori for starting it. Thank you Lee, Andi and Tricia for your thoughtful
posts.

Bill · 05-08-2008, 06:34 PM

Thanks to all of you. What a great family we have here!

Vanessa · 05-08-2008, 09:51 PM

Terri,
For some reason I feel compelled to tell you that we do have much better days and weeks here. This one seems to be the worst since I have been here, but I take comfort in the words of my sisters.

harrie · 05-09-2008, 12:13 AM

Thank you for all the inspiring and heartfelt posts. Andi, I believe you hit the nail on the head for me and I needed to read that.
Sometimes it really gets tough, even at this site, reading all what everyone is having to go through and some coming to the end of their battles.
There are so many ways of looking at life, looking at cancer, looking at death. I try to confront and recognize, yet not let it override the peace and gratitude of life. Sometimes it is easy, sometimes incredibly hard.
Coming together and reading the feelings and ideas of others helps.

StephN · 05-12-2008, 12:02 PM

Hi -
Hope everyone is feeling a little better this new week.

I was researching some Scottish music and found the following, that I really liked. Seems an appropriate way to integrate with the sad news we have had. There is no author given in my source.

"For we are, each of us,
a collection of memories
Our personalities are the
collective result of
everything that has
happened to us. yeah it is at the
end of the day we look back
upon the days and years
through the looking
glass of memory.
And when we are gone,
we become a part
of the memories
And personalities of others."

Take a second and reflect on this, as it has helped me cope with my Dad's passing.

Faith in Him · 05-12-2008, 01:13 PM

Andi,

Your well thought out words are just what I needed today after seeing the surgen and getting my pathology report. I did not see it last week but today, just when I needed it most.

Thank you so much for the encouragement you bring to this site.

Tonya

BethC · 05-12-2008, 02:55 PM

Thank you for sharing your lovely thoughts and prayers Flori, Steph and MJO. This is a scary disease that seems sometimes to do whatever it wants.

Beth

eric · 05-12-2008, 05:57 PM

Flori (and Steph) - so well written and so on point! Thank you.

fauxgypsy · 05-19-2008, 08:03 PM

Flori,
In one of the cancer magazines that I receive, there was a story about the (apparently miraculous) effects of fruits and veggies in our diets. It said that eating 5 servings of fruits and vegetables reduced our chances of dying by 50%. I read it twice, to see if anywhere in the article they were more specific. I have a 100% chance of dying. The only thing up to chance is when. So eat your veggies.

It is very difficult to come here sometimes. It is so easy to feel close to so many people in a short time. In a community bonded by this disease we will lose friends. Our friends will suffer and sometimes I feel helpless. Everyone deals with grief differently. Some retreat to make peace with their losses, like me; others draw closer to the community. As a group we see the ravages of cancer more often than most people. At the same time, this wonderful group with its everchanging population (from the newly diagnosed to our living legends) helps make us less isolated. Very seldom in my everyday life do I find someone to discuss all of the changes this has made in my life. The information that is shared, not just the research but the personal anecdotes and experiences, have helped me get through many things. I know I am not alone. Thanks to all of you!

Leslie