Bone Mets Thread
Comments
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Patty, very happy to hear you are heading home! Enjoy your holiday!
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So happy for you, Patty! And such sad news about dunesleeper. I always admired the honesty of her posts... I too hope she's peaceful and pain free.
Wishing Happy Holidays to a most generous and kind group of women...
Rose.
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So so glad to know you'll be home for Christmas Eve, Patty! Thanks for sharing the good news at a point we all need some.
Like everyone else, I am crushed about Charlene. I think Caryn said it very well. The range of hospice experiences can vary greatly. I've known people who actually perk up and do well for many months -- better than when they were still doing active tx. And I've known others who only last a few days. Sadly, I think it depends a lot on where your mets are, and how weak you have or haven't become from chemo. It's very hard to gauge someone's situation from the word "hospice" alone.
I guess what I find especially sad about Charlene's hospice situation is that we weren't told in time to let her know how dear she is to us. I hope the messages Linda and Terre relayed will reach her and comfort her in some small way.
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Patty, so happy that you're going home in time for Christmas! Enjoy!
Lindalou, that is such a lovely sentiment in this time of sadness. Thank you for sharing it.
Linda, if you're able to get an address for Charlene, I'd love to send a card, but if not, then I hope she knows how much she meant to all of us.
Merry Christmas to those who celebrate & Happy Holidays to everyone! Cheers, Dee
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Patty I'm so happy for you! Best Christmas present ever!
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Valerie, I am happy about your news.
Patty, Enjoy the holiday with your family. I am glad you are home again.
My DH has had a couple of bad days and is still in ICU, but hopefully he will turn around soon. The current thinking is that the source of the issues, dropping hematocrit, very low blood pressure, rapid heartbeat, exhaustion, very low urine output, was that fact he was given heparin so soon after surgery during which he required many units of blood. The vascular surgeon felt that the heparin was unnecessary since the source of his October pulmonary embolisms, the tumor thrombus in his vena cava, was removed during surgery, but he was overruled. Today they considered additional surgeon to see if there was internal bleeding, but after receiving two more units of blood, DHseems to be stable. I extended my hotel reservation here in Boston since I will be staying longer than planned.
I wish a Merry Christmas to everyone who celebrates. I also wish everyone a new year filled with, joy, love, and peace.
Lynne
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Lynne, wish your DH continue to improve and wish you and your DH a very special and peaceful Holiday season!
Rosevalley, who made her last wish to be a full presence with her family at this Christmas, wrote the following yesterday in another thread that I want to borrow to mark this moment with all my dear friends here:
To each of you special blessings for all the traditions that warm your heart and speak to your soul! Light the candles, the tree, whisper the prayers and chants, sing praises and experience joy- be totally present with your loved ones! (((Hugs))) to you all.
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Patty I'm so glad you get to go home that's great. Your family will be so happy very nice to hear some good news. Did they find out why you were loosing the weight? Regardless enjoy your turkey with family.🤗
Dunesleeper I am thinking of you dear lady and hope that you are pain free and with family.
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Patty-So happy to hear that you are home enjoying Christmas.
Lynn- yourself and Dh remain in my prayers! Are your sons in Boston with you? I hate to think of you alone in a hotel on Christmas Eve. Wishing you could come over to my house for some tamales and green chili. Tomorrow I'm making a standing rib roast and Yorkshire pudding. I would like to be able to pamper you a bit. You so deserve and need it right now!
I'm heartbroken at the news about Charlene. No words...
For all of the other wonderful,strong, brave women on this thread, MERRY CHRISTMAS!!!
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Hello to all,
Patty, I'm so happy you're home in time for Christmas! Enjoy your time with dh and the boys. I hope you are feeling better and better everyday.
Kendrasue, thank you for sharing your good news, I breathed a sigh of relief. We were all thinking of you and praying for good results.
Lynne, thinking of you and dh and glad to hear he is stable. Prayers for steady improvement here on out.
I know all of our hearts are aching for Dune, she is a woman of incredible strength and spirit. Prayers for her that she is comfortable and pain free.
Merry Christmas and Happy Holidays to all you beautiful women here, wishing you a peaceful and pain free holiday season.
Hugs to all, Annie
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Kendrasue, such good new for you
Lynne, I'm sorry I forgot to mention you as I was thinking of you and dh and glad to hear he is stable. Hoping for steady improvement.
My heart is aching for Dune. I'm afraid this is the third blow to me this month & I can't handle it anymore. I'm sorry but I've decided that I must take a break from BCO. I will miss all of you terribly, but I can't handle another loss. I still haven't come to terms with my friend Susan, let alone Carla & now Charlene, & there's a couple of more on the FB, Canadian Metastatic site.
I will answer PM's, so if you want to feel free to send them often, but I can't handle the losses of all my friends. Have a lovely holiday season. Please, all of you, please take care of yourselves, I can't lose any more friends. Love, Dee
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Dee I think we are stunned. There are no words. Just a warm hug.
Regarding hospice, my mom was in hospice. She had nurses come every 2 days or whenever we called, like a sudden rash(due to meds), severe constipation, when pain meds did not work all of a sudden, and supposedly they were to be available whenever. Yes, it could take them 1hr to get to her, but they would come. But then, when death came knocking for some crazy reason, it was of course like 2 in the morning, WE COULD NOT get the nurse, unbelievable we kept calling they kept telling us someone will come, her breathing got so awful, and some in the family took it upon themselves to take her to the hospital, ( I did not want, but there were many of us, and her breathing was just an awful thing to see), she was put on a Pap to help her and she died later that day. Not the way some of us wanted. They were gonna move her to a regular room only, and refused our request for ICU, I came to find out later from professionals (and books I have read since), that because she was DNR there was not incentive to even try to help her live, (we were not talking of resuscitation). At the end, we got a million excuses from Hospice, how this could have happened, BUT it did not make us feel any better.
Hospice is good in that a person gets a real nurse to check in on them, and a doctor if needs be, but one more thing I did not like very much, is that she had her meds in order from her Onco BUT Hospice decided that certain meds she cannot take, and they become the boss in that, if you want ins to pay for it, (even thou we signed papers that we keep Onco and Primary as our docs) ( For sure there is some politics involved in that). For instance, she took Vagifem the last year, it helped a lot for her to protect herself from UTI, bcs it made it less dry, it was in a suppository formula, Hospice decided bcs of hormones it's not good for her, SHE WAS DYING IMMINENTLY, we did not want her to get a UTI on top of it, so we circumvented it, got Onco to prescribe and paid out of pocket. And so it goes...
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we here in Denver have been blessed with a beautiful white Christmas, Here is a picture of my messy back yard today.
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Stefajoy and Dee, I completely understand.
Changing the subject, is there anything I need to be careful about when flying? It's the first time since diagnosis, and I suppose I should have asked a bit earlier...
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Milaandra,
If you've had any lymph nodes removed, you might want to consider a sleeve with glove or gauntlet . In any event, drink lots of water, avoid alcohol and caffeine and move around as much as possible, even if it's only seated exercises. Have a good flight
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Milaandra, if your white counts are at all low, you might also want to have a mask with you to put on after you board. Do not wear it in the boarding area because other passengers may assume you're the contagious one and the airline could even refuse to let you board. But put it on after you're seated, and explain to anyone seated near you that you are not contagious -- you just have a weakened or compromised immune system. This suggestion from my onc rings especially true after just hearing about a cousin's son, home from college on holiday break, who was contacted b'cuz someone on the flight he'd been on had tested positive for TB. As it turned out, Jake (the college freshman) also tested positive for TB! So I don't think it's being overly paranoid to be extra careful! Have a great trip!!!
(((Dee))). Breaks from BCO are totally understandable. Do whatever you need to do to come to terms as best you (or any of us) can with so much sadness and loss. I'm just a PM away if you want to talk, and my phone numbers are on the contact list.
I hope everyone is having a beautiful Christmas Day -- though surely somewhat tempered by what we know about Dune's situation. I'm sure she wouldn't want us to be sad, which I'm guessing is why she chose not to share with us what was happening.
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I found Charlene's Twitter feed. She last posted there at the end of November. It also contained a link to another page of hers where she detailed her work experience and her choice to seek no conventional tx for her initial bc disgnosis. I know, I know ... even with conventional tx, there are no guarantees. It was just hard to read. Who knows what the right choices are? I thinks that's the source of so much of our frustration.
Hope you're all having a good Christmas Day. I'm getting ready to go to the movies and then out to dinner. Thai, rather than Chinese, but a typical Jewish Christmas 😉
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Just wanted to add a quick PS about travel... Knowing I had 2 trips planned and was concerned about getting sick due to low counts from Ibrance, my local onc had written me an RX for a really strong antibiotic, "just in case." I thought it was kind of stupid, but it turned out to be a great idea, because that's exactly what happened, and I was so glad I had the antibiotic on-hand and could start it immediately. So just another thing you might consider doing, Milaandra -- asking your onc for a script to have with you, "just in case."
Back to finishing up dinner. Thai food sounds great, Caryn! Enjoy! And thanks for sharing what you did about Dune. It's just so hard to know if conventional medicine might have served her better back then. Sometimes I think our bodies are just preprogrammed to either have a recurrence or not, no matter what we do or don't do. But we'll never know.
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I hope everyone had a good Christmas Day.
Chelle, the snow is perfect for Christmas. It was in the 60s here in Boston. I cannot believe the weather we have been having in this area. The ski areas are north are hurting since this is usually a big week for them.
I can understand why Dee is taking a break. There have been times when I have thought about doing the same thing. Lately there have been several on these boards who have passed away or started on hospice. It both saddens and frightens me when I read the news. Right now I feel so normal that I sometimes think there is nothing wrong with me. If someone saw me, they would never suspect that I have stage iv bc. I do not feel particularly sick. I seem to live in a fantasy world in which I am a strong, healthy woman. When I read sad news about friends on these boards, it forces me to face the reality of this horrible disease. I know what keeps bringing me back here. It is the feeling of support, understanding, and connection with all the wonderful women who take their time to care about each other and make themselves available to all who need them. This is the only place I can find people who truly know how I feel. I am grateful to each and every one of you special people.
My DH is still in ICU. Every time that he takes a step forward, he takes half a step back. He is feeling discouraged , and I wish I could do something to make everything better. We will be here for some time I think.
On a happy note, my husband and I have a new granddaughter. She was born at 11:49 p.m. on Christmas Eve. We haven't seen her yet because she is in New Hampshire, but that doesn't lessen our joy. I have attached a picture of my son's sweet daughter, Scarlett Elizabeth in the arms of her mom
Have a good night everyone.
Lynne
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Little Scarlett is adorable. Congratulations to your family.
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Oh Lynne, she's beautiful! Congratulations! And I'm so sorry your DH is still in ICU. Sending good thoughts that he recovers sooner rather than later. Nine hours of major surgery will take a bit of recovery. No wonder he's frustrated; I'm sure he wants to get on with things - and to see the new granddaughter!
Lynne, what you wrote about being ok, and being forced back to reality - speaks for me as well. I have arthritis pain and probably some pain from the mets - hard to distinguish which is which - but overall, I'm quite healthy and just getting on with things. The fatigue is the primary reminder that I have cancer. And living in a kind of denial; I accept that i have Stage IV cancer, but also figure I've got a fair amount of time left - at least long enough to pay off this house we just bought. So, seeing so many pass or enter hospice is indeed a sobering wake up call and reminder of how horrible and unfair this disease is. I have considered taking a break too, but the support and friendships here are so valuable to me. Even though I do feel guilty sometimes for being so healthy.
Dune going into hospice is a major shock and I am devastated to say the least. I've gone back through her posts here on bc.org, and the private messages she sent me and there's no hint of anything this bad except getting the flu when her wbc was low and not being able to shake the cough she had. Her niece said that Dune was "awake and talking, but not making a lot of sense". So I'm almost wondering if she didn't have a stroke or a fall or some type of brain injury. I didn't ask her niece; didn't want to pry and her niece was already uncomfortable enough with some random person from New Zealand calling. Skylotus (Tricia) is also in hospice, a beautiful warrior princess who has fought the hard fight. Carla and Cathy gone too soon. Hope trying to decide if she will continue treatment or go to hospice. Blondie, Rosevalley, and all the others facing or in hospice. Just too much. My year started off with my friend (and our best man) Bob dying from falling and having a head injury after surviving with AIDS (not just HIV Positive) for almost 30 years. And it seems like it's been one loss after another this year - both here and in "real" life. Just way too much.
All that said, I don't think those who have passed or who are close to passing would want us to be too morose for too long. I started learning how to work the riding mower today; it doesn't steer very well. So it looks like a drunk was mowing..zig zag all over. And I thought of how telling about that would make Dune laugh. As evidenced by your beautiful granddaughter, Lynne, as well as Myra's beautiful granddaughter, Caryn's grandchildren and grandchild to be, etc., life continues, and there's still joy to be had. So, raising a glass (of ice tea - it's only 4:00 in the afternoon!) to all who have passed and all who are here....each one of you is a treasure.
Wishing everyone love, hope, peace, and happiness during the holiday season and all year.
Terre
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Lynne. I feel what you feel too, about living this fantasy of being healthy. Sometime these boards are the hardest reminder that I am not. And yet, I still come back day after day, to be around other woman who understand better than anyone, and also to lend my support if I can. I only just started BCO last April or May, although I have been stage IV for four years, so I am just starting to experience the losses.
But I like what Terre said and I do think I'll stay here for a while to mourn the losses, and confront our fears together, then move on and enjoy the things we still can celebrate... Like Lynn's granddaughter Scarlett.
I feel so so sad about all of our friends in hospice right now. But at the moment I also feel pretty good and pretty strong, thanks to the last few posts here
Lots of great ladies here. I'm excited (not fearful) to get to know you all better.
Stefanie
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50sgirl,
Congratulations on the birth of your beautiful granddaughter. She is precious.
Birth and death, the inevitable circle of life. For us, being part of this forum places us in an even smaller circle where death is far too common. It is constantly hanging over us and very, very concentrated. We experience it more acutely than the average person, even if we are in good health ourselves (and no one should feel guilty about doing well or living a relatively normal life. I will happily celebrate everyone's good health and fun, even when I decline). Yet, even though we know all of this, it can become overwhelming. Sigh...this is our current reality, but my fervent wish is that it won't always be so.
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Oh Lynne she is absolutely gorgeous I am so envious. Hopefully you can visit her soon.
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congratulations Lynn! She is so pretty! I have recently learned that our oldest dd is expecting our second grandchild in August.
I hope everyone had a blessed day
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greetings from Honolulu. I enjoy just staring into the distance of this view
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Good Morning all,
Lynne, congratulations on your granddaughter Scarlett! She is such a gift to you right now. Hoping your dh can move out of ICU soon and gets stronger with fewer set backs each day. Take care of yourself too. Those long days in a hospital are difficult.
Bosco, What a view ! So serene, and peaceful. Just what we all needed.
Chelle, Thanks for your pretty winter scene.
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Good morning to all,
Chelle, I would have given anything for that view of the white snow in our back yard. It just didn't feel like Christmas with a temperature of 52. The day before it was in the 60's here. The snow will come when I no longer want it.
Lynne, congratulations on your beautiful granddaughter Scarlett! I'm sure you can't wait to see her. Prayers for dh to take a turn around for the better real soon.
Bosco, what a breathtakingly beautiful picture! Thanks for sharing.
Terre, your post really struck a cord with me, so well written.
Hugs to everyone here, Annie
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Good morning all,
Lynn, Scarlett is just adorable, congratulations! Things will turn around slowly but surely for dh. It was major surgery. Do take care of yourself as well!
Chelle - congratulations to you are in order as well!
Bosco - WOW. Gorgeous!
Annie - all the snow we got on Monday completely melted. The weather is incredibly mild and oh so perfect to take nice walks.
Terre - I agree your post is so well written - it really says it all.
I too sometimes want to take a break, but always come back. I have received so much support and love on these threads and understanding. I am too attached to you all to stay away for too long. We grieve together and we share our good and bad times. We're a great bunch of resilient ladies, whether we take breaks or not.
I promised pix of Praline, but my sister is experiencing technical problems with her fancy doo complicated camera. Patience is a virtue...
Wishing you all a great week-end!
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Thanks to all of you for the beautifully expressed feelings about living with cancer this morning. We all understand. And the photo was awesome. The view of the Pacific from Hawaii always has a calming effect on me. Unless there is a hurricane of course!
Chelle-my oldest dd is expecting our second grandchild in August too! Babies!!!
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