A place to talk death and dying issues
Comments
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pearl ~you’ll be On my mind. Sending hugs.
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Pearlgirl, thank you for sharing this difficult news with us. I am also sending you gentle hugs, and completely agree with your statement, "I really like having agency about WHEN I'm going to die of breast cancer". I hope that everyone in your life treats you with gentleness and sweetness.
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Pearlgirl,
Let me start by sending you a big virtual hug. I wish we could each give you one in person. I am sorry to hear that you are going through so much. I hope your medical team can get the pain and nausea under control. It is so hard to deal with everything when you feel rotten. I am sure that in addition to trying to adjust to the news that your treatment choices are limited or in question, you are still trying to adapt to and recover from the loss of your beloved Mom and the need to put down your precious dog. Do you know how soon you will have the results of the testing so you can investigate the possibility of clinical trials or targeted therapy?
At times like this is is easy to feel lost and confused and sometimes helpless. It sounds like you have a strong support group as well as a long-term plan. Please don’t underestimate the additional support that awaits you here. I know from experience that there are people here who understand. While it is true that people don’t post as often as they once did (due to some technical glitches encountered), I am sure some people will chime in with encouraging words or just a willingness to listen. Please keep us informed about how you are doing.
Hugs and prayers from, Lynne
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pearl-girl,
Thank you for sharing your situation so honestly and eloquently. I wish I had some great words of wisdom but even after a decade here and being all too well aware of our reality, I will simply wish you peace
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When I posted to this thread a few days ago, I was overcome with memories from more than two years ago. At that time, my MO had the talk with me and told me that I could stop all treatment or try a long-shot, Adriamycin. I chose Adriamycin, and luckily it worked. I came to this thread at that time because I thought I would die soon. At the time, Pam and Maureen had also been given the talk. They both stayed in contact with us here as they tried whatever they could to live just a bit longer. Unfortunately, neither of them survived, and we mourned the losses. Even now I have tears running down my cheeks as I think of them. I feel a twinge of survivor’s guilt. Why I am I still here? I have tried to honor them and so many others we have lost by not taking my life for granted. I enjoy every day that I am here on this earth. My days are still numbered. My MO has repeated the talk several times over the past two years as treatment after treatment has failed, sometimes quickly, sometimes after a longer stretch of time. So far he has been able to pull something else out of his bag of magic, but I know the options are not unending. I remember all the support I received here two years ago. I want you to know that your words, love, comfort, and understanding were not lost on me. I appreciate all of you. Today is my birthday. I am excited to be here to celebrate. Last year my hair all fell out in the shower on my birthday lol. I had started on Halaven at that time. I had time to grow the hair back into a pseudo-pixie before it fell out for the fourth time a month or 6 weeks ago, this time from Ixempra. Who needs hair anyway! I don’t post as often as I once did. I feltthat I was no longer helpful, no longer knew what to say. I looked back at all the friends and acquaintances I had lost here, and it hurt. I recently realized that I shouldn’t focus on the pain. Those very same people enriched my life with their words, experiences, and support. That is what is important. I have been blessed. I told my dh that this is my best birthday ever. I am surrounded by love and I am still alive!
I hope you all enjoy the weekend. I apologize for rambling on (again).
Hugs and prayers from, Lynne
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pearl-girl, I have no words, except to say I'm so sorry. I wish I could give you a hug.
50sgirl, wow, talk about a roller coaster. You're basically told that there is only one Hail Mary left for you. It works, then it doesn't. Another Hail Mary... Happy birthday to you! Please don't stop posting but DO stop thinking that your posts are not helpful. They are helpful. I'm here almost every day. You and the other ladies are my strength. You all GET IT! Even if all we have to say is, "that sucks!"
Carol
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pearl-girl, I don't know what to say but would like to send you some virtual hugs. I hope you find peace.
50sgirl,
I don't post much either, half of the time I just don't know what to say. I do love reading your posts, you have a gift of writing what a lot of us feel too. I hope you have a Happy Birthday!
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I feel your caring 50s girl and always look forward to your post
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50s Girl,
Please do not stop posting. I read your posts even when they are talking about a drug with which I am not familiar. They have given me hope and the will to try and carry on.
Happy birthday to you -- and may you have many more.
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Happy Birthday 50sgirl! Hope you are having a wonderful day. I look forward to your posts because you always seem to have the right thing to say. Sometimes I don't respond to someone who is struggling or in pain because I just don't know what would be helpful-but you always seem to find the right words. You are deeply appreciated here. I hope that your MO continues to pull magic out of his bag so that you can enjoy more birthdays!
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Lynne,
I echo what the others have said. You have a way of touching us with your words on a different level. I always feel like you care deeply about what is going on in my life, and what a blessing you are to me
I hope that today, your birthday, brings you peace and hope for more years to enjoy your family and friends. Happy Birthday!
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Happy belated birthday, 50sgirl! I am another one who is always happy to see your posts!
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Happy belated birthday, 50's girl! Add me as another who enjoys your posts! You have a beautiful and calm way with words. I am so happy that we can all celebrate you this weekend. Enjoy !
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50’s Girl— happy belated birthday!! Miss seeing your posts. Hope to read from you more often.
Again, happy birthday!!
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Happy belated birthday Lynne! Another April baby. 😊 I celebrated a milestone, my 60th, a couple of weeks ago. Lots going on for me so it was a bit muted although I insisted on opening a bottle of champagne!
I echo the thoughts of others. You continue to have so much to contribute and have helped and supported me in innumerable ways that you are likely unaware of. In particular, you are opening avenues of discussion with my own MO as my options become increasingly limited. We have some similarities in our disease which might mean some of the treatments in your docs bag of tricks might apply. For instance, I was so pleased to see Ixempra working for you, a drug which interestingly is no longer available here. It may be something I need to push for.
All to say you are valued and loved on this forum. Please keep posting!
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Pearl - I just read your post and I wanted to let you know that I am thinking of you and your family.
Lynne - You my friend, have been a rock for me! Whenever we talk, we laugh and cry sometimes, but I always feel the love. Always. I too have stayed away for many of the same reasons as you, but I can tell you that when push comes to shove, I need you and this wonderful group!
Not to write a book but on April 20th, I collapsed at the dog park . Friends came and got me and my dogs and I ended up in the ER. What I thought was a slow recovery from pneumonia ended up being pleural effusion that had gotten worse. I was in the hospital until Saturday afternoon. During my stay it became clear that I am going downhill and my palliative care doctor said it was time to bring in Hospice. He said that there is a chance I could rally, but until then I need Hospice. Several weeks later, I think he made the right call. I am on oxygen at night and some days. My mind keeps telling my body to get better, but it's not listening. I came home with a renewed will to fight, but today I am facing my bodies lack of cooperation.
Our son was here with his family and they took care of the few unfinished legal issues that I had left to deal with. We were able to spend quality time together and make a few more memories. I am very grateful for that!
I wanted to tell everyone here how grateful I am for you! You have kept me sane and helped me deal with side effects of different treatments. The kindness and compassion found here is a Godsend for me and for others.
Thank you,
Claudia
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Claudia, sending big hugs & still hanging on to hope. Glad your friends looked after you well & that your son was able to visit. Will be thinking of you
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Claudia, my heart is breaking for you. Wrapping you in a gentle and loving hug. Cancer sucks!
Carol
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Claudia, I’m wrapping you in a warm embrace and sincerely hope your body recovers. Thank goodness there was help close by! My thoughts are with you.
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Claudia~holding you close in my heart and in my mind. Hugging you gently.
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Claudia, thinking of you and hope you can rally. Hugs being sent from Florida.
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Claudia, it is nice to see you posting although it is unfortunate that it is on this thread and about this subject. You have been and are such a good friend to me. I am so blessed to have met you and spent time with you. There have been times when I have hesitated to call you because I had no good news to report and I would tell myself that I would “just wait until things improv. “ I now wish that I had called every time I thought about you. Well, maybe not EVERY time since the phone would have been glued to my ear. Of course when I did talk to you, I didn't want to hang up. You are always so supportive.Sometimes I would laugh so hard the tears would stream down my face. We do share a weird sense of humor. As you know, Jim and I have spent most of the last two years at home. You and Jeff, on the other hand, have followed your dreams traveling around the country, riding your horses though the mountains, making new friends, and seeing the beauty that surrounds you. I admire you so much for that. I thought you would be able to do that for many more years. I still hold out hope that your body will follow your mind's thoughts and you will rally. In the meantime, as you know, my love, thoughts , and prayers are with you. You are a dear friend. I have to add that I really hate mbc.
Hugs and prayers from, Lynne
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50sgirl, what a beautiful post. It reminded me "not to wait" to do something, call someone, take that trip, or whatever.
Thank you for sharing this.
Carol
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I am feeling sad these days about the loss of so many of us. It is hard to talk with people outside this group about it, because they don't know any of the people I am talking about, it is hard to grieve alone- ShetlandPony was someone I was particularly close to so her loss has been really hard, we privately emailed a lot so knew it was coming but, the finality is so hard. so many other losses lately and also all the people that I don't know what happened to who just disappeared. The suddenness of some people's death- I know it is a crapshoot and none of us know if we will be here tomorrow- But, BevJen seemed sudden.
Also 3 new people in my world now have breast cancer!
so sad
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nkb: we seem to have lost so many in such a short time. Then there are those who just stopped posting. Sandibeach, AlabamaDee.......or did I miss a post? I am so sorry that there are three people in your world now.
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nkb, It truly is a sad time. In addition to the people we know have passed, there are so many others that just drop off these boards. It seems to happen more frequently these days. Several years ago, it seemed like we were able to keep in touch a bit more and kept aware of how others were doing. Maybe I am mistaken. The losses are definitely hard to take. I try to focus on how the people we have lost were able to enrich our lives and brighten the world while they were here. If I don’t do that, I feel like I am failing them and focusing on the sadness of their deaths rather than the joy of the lives. I do not trivialize the losses which are painful, but it helps me cope just a bit. It has been more than 7 years since my mbc diagnosis, and I have lost so many friends here. The tears still flow with each loss. I sometimes wonder how I am still alive when so many others are not. There is no explanation. I hope and pray that more effective, long-term treatments (or dare I say cures) will come soon.
I hope your three friends receive effective treatments with few or no SEs.
Hugs and prayers from, Lynne
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nkb, it was nice to meet you today in our meeting. I hope you decide to come back. I agree, so many losses in such a short period. Now Moth (Margaret) as well. I am sorry about ShetlandPony, BevJen, Rabbit, and so many more I didn't know.
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I am also in a MBC Facebook support group and the losses there are gut wrenching. We also have so many very young women with this damn disease. It was hard enough getting dx w/stage 2 breast cancer at 34 but I can’t imagine having MBC so young. I hate cancer
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I must admit, I’m finding it a bit rough at the moment but have noticed over the last five years that the losses seem to come in waves. I am heart broken about Moth - we communicated quite a bit by email, particularly after the Community site got so messed up. She was five years younger than me - too young to be lost to this crap disease (Goldens, I was originally diagnosed as stage 2 at 38…).
There are so many that have passed who were regular posters and brought so much knowledge and caring to the Community. I miss them all. I also struggle with those who just disappear. It’s one of the challenges of social media as we have no idea if folks have just stepped away or….
50sgirl, what a lovely sentiment. It is a wonderful way to cope with the losses. Those who have gone did indeed enrich our lives, give to others here and, quite often give as an opportunity for a deep belly laugh (Lita comes to mind 😁).
Sending virtual hugs to everyone.
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I agree with sadieservant, the losses seem to come in waves. It’s difficult to process for sure but I also ache for those who simply stop posting. To counterbalance that I imagine that they no longer post because they are doing well and just living their lives. This may be true but mostly I just find I need this bit of self deception to cope.
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