On death and dying....surviving grief

[SoCalGal]

What I've learned about life is the moment you are born you are guaranteed to die. Everyone wants to live to a ripe old age and die peacefully in their sleep. Life does not work that way.

Life is ROCKY-full of chaos-scary-violent-heartbreaking. It is also filled with love-miracles-blessing-unexplained goodness and HOPE.

Losing friends on this board hits so close to home for all of us. It is deep in ways that only one fighting cancer can appreciate. It brings up our worse fears along with sadness and grief at the tremendous loss we feel. It is a window into what it will be like when it's our turn.

We cannot really mourn as a community at a community service since we are but a virtual community. We can only offer our prayers and love and sympathy to each other and to the friends and family still on earth. We can express what we mean/meant to one another in hopes that the family and loved ones find comfort knowing that their loved one contributed so much to so many others. I hope that the loved ones of our members find comfort in knowing what a vital part of the her2 family each and every one of us is and how without EACH unique voice on this board we are just individuals floating in the universe - alone with a dreaded and incurable disease.

Together we are more parts than our sum. Together we can share a healing energy of strength-love-and courage. I am going to focus on that this week. How much we have built together and how much that means to us all.

I am going to keep sending prayers and healing thoughts to everyone connected on this board. May we all find comfort to get through this week.
Love
Flori

[StephN]

Dear Flori -
nicely thought and written as usual.

This prayer came to mind as we have lost a couple of our Irish sisters now.

An aquaintence sent the following to me when I was at a low point with aggressive mets. I posted it on this site one time maybe 3 years ago or more.

ST. PATRICK'S BREASTPLATE

I gird myself today with
the power of God.

God's strength to comfort me,
God's might to uphold me,
God's wisdom to guide me,
God's eye to look before me,
God's ear to hear me,
God's word to speak for me,
God's hand to lead me,
God's way to lie before me,
God's shield to protect me ...

May these words be a mantra for you and others, as they were for me, as you face the unknown. And I will pray for you all to be blessed in your battle as I have been.<!-- / message --><!-- sig -->

[Mary Anne in TX]

Thanks Flori!

[PinkGirl]

Thank you Flori. We sure are a sad
group right now.

[hutchibk]

I love you Flori. I feel like I have known you a lifetime. Thank you for sharing with us. It really does help right now. Sigh.

[tricia keegan]

Thank you Flori, you put that beautifully and there truely is strength in numbers. What a lovely prayer too Steph, I'll keep a note of that as I have'nt seen it before.

[Terri B]

I feel so bad for all of you. I haven't been here long enough to form deep friendships as you all have. I am shocked and saddened by the swiftness of it all.

[goops]

Very well said Flori

[dhealey]

Thank you Flori and Steph, both post very true and spiritural. I needed to read those today as I am scheduled for yet another ct scan for a problem no one seems to be able to figure out. This disease is such a roller coaster ride. I remember when my mother had symptoms that the docs couldn't figure out, her cancer had come back with a vengence. It saddens me so when we lose a dear her2 sister. Always in the back of my mind, am I next. It is so hard to move past those feelings.

Please forgive the negativity, I am having a bad day.

[swimangel72]

Beautifully written Flori, thank you so much - I'll be adding my prayers for our community here. And Steph - I love that prayer of St. Patrick - a friend sent it to me as soon as she heard about my dx......very powerful and moving, especially for me of Irish decent. Thank you for posting it.

[chrisy]

Flori and StephN, wonderful thoughts, thank you.

[Bill]

Thanks Flori, and Steph. You're right Pinkie, we are a pretty sad group right now, you can almost feel the sense of "quiet" on the site right now.

[sassy]

Thank you Flori and Steph. We are a quiet bunch, as Bill said--reflecting, casting about in our own pool of fears.

But we should also rejoice--in the lives well lived by those we have lost. In the final victory. This is what I have to remind myself of--that though we mourn for and miss our dear ones, we can rest assured that they have moved on to a place of no more fears and worries.

Won't that be a blessing.

[Mary Jo]

Hi Flori,
Thank you for the wonderful post. I was thinking on the same wave length tonight and was coming here to post my thoughts also. But you dear friend, said it all, and said it perfectly.

Thank you.....and love you too..

Mary Jo

[Becky]

What a sad week for all of us. There have been other bad days on the board but for some reason, I feel the worst this week and wish we could all be together and have a real hug, not a cyber hug. I need a real hug today.

(((((Hugs to all of you))))))

[Leslie's sister]

Yeah, I'm feeling the same way. It is a pretty rough week. And then I start to think of others...... Nicola, Sandy, Lisa, LuAnn, many, many more. It breaks my heart.

I love all of you so much. You have given so much of yourselves, helping each other, uplifting each other. I just cannot thank you enough for the love, hope and inspiration that you give to me. I think back to where I was two years ago and I feel so armed with knowledge and that knowledge has primarily come from this site.

I know that we have had differences of opinion on "stuff" in the past, but really when it comes right down to it, everyone is here for each other, sharing their knowledge, helping to pick each other up. We laugh together, celebrate together and today, grieve together.

My prayer today is that God comforts each and every one of you, lifting you up, filling you with His hope and peace.

Lisa

[MJo]

Thank you Steph for St. Patrick's prayer. Here is one that I love:

<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p> </o:p>
"I asked God for strength that I might achieve;
I was made weak that I might learn humbly to obey.
I asked for help that I might do greater things;
I was given infirmity that I might do better things
I asked for riches that I might be happy;
I was given poverty that I might be wise.
I asked for power that I might have the praise of men;
I was given weakness that I might feel the need of God
I asked for all things that I might enjoy life;
I was given life that I might enjoy all things.
I got nothing that I asked for, but everything that I had hoped for.
Almost despite myself my unspoken prayers were answered:
I am among all men most richly blessed."

[Leslie's sister]

Mjo:

Wow.... That prayer says it all. Thank you. What a great way to start the day.

Lisa

[nitewind]

Thank you, Flori for your wonderful thoughts. I am so glad that we have each other to share the sad times and the happy times. And, Steph, the Irish prayer is wonderful, I am nearly full blooded Irish yet I've never seen this. Thanks so much for sharing. Bill, I understand what you mean about feeling the silence. I thank God once more for sending me to this site, I don't think I would have survived without it.
Hugs to all my wonderful cyber family

[Kim in CA]

Dear Flori,

So much sadness this week had me overwhelmed, and I must admit that I wimped out and have not been able to find the words to post. I try to check in weekly to keep tabs on everyone, but sometimes I am just so sad that I end up not offering anything.

I just wanted to say that you have said it all beautifully, and the poems from Steph and MJO are spot on. I know that none of us are getting out of here alive, but it still hurts to see those that have fought so hard leave us.

I will end by saying thank you all for being here and being such a loving and supportive family.

I love you all,

Kim

[Colleens_Husband]

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]

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<!-- / message --><!-- sig -->

[SoCalGal]

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]

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]

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

[Bill]

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

[Vanessa]

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]

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]

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]

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]

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]

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

[fauxgypsy]

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