A place to talk death and dying issues
Comments
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so very sad to hear of pam and Valerie’s passing. May they Rest In Peace.
Happy for Lynn’s good news
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arolsson I feel for you so much re children. Nothing hurts as this does. You know they will grow and reassess and see it in a different light.
I guess that is what happens when we are single - we look for support from children and they freak out from it and instead of providing it make a point that this is not their role.
I admire your government for not doing lockdown and I so wish your country is successful in dealing with this virus .I may come and visit you - I am in the UK so it is just a short flight for me. I know it is a bit of a wishful thinking as there are many calls on time and money but still possible ..
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Lynne I am so glad to hear your good news. We all can use good news esp that the red devil is helping.
I thought that I was done for during my last hospital stay but here I am. I just realized that tomorrow will be the 3rd anniversary of my Stage 4 diagnosis. I never expected to be here. My paperwork is in place, my last wishes are written down. QOL is not bad this week Every once in awhile I think maybe this isn’t going to happen...but reality brings me back it sounds crazy but I love that moment.
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Hi everyone, it's been a tough couple of weeks with blood tests producing results all over the place, a bad bacterial infection with high feber and calcium levels off the charts.
On the bright side being as sick as I have been, and with high fever, got me approved for a COVID-19 test and I am negative. (yahoo!)
Have been looking with not much success for palliative care facilities somewhere pleasant. Is this too much to ask? know that these places exist (have been checking out the place in chang mai though it seems to specialize in dementia and elderly care). I'm only 52. All I need is a bed, a wheelchair, good Wifi and a tropical breeze....
anyone with ideas on how to find these places?
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I’m so far behind here but can’t help posting this for a laugh.
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Mea, lol. That lady sure had a since of humor.
Arolsson, sorry can't help. Palliative care in the beach sounds wonderful.
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Thanks SImone. Forgot to mention that my palliative paradise will probably need access to a morphine drip. ; ) Or maybe some locally grown alternative.
speaking of which I have to go back on the IV for hypercalcemia and they are mumbling something about a bone marrow biopsy, and my friend who has offered to help with my will wonders if its not time to set a date with a lawyer...is the universe trying to tell me something?
Just watched Emily Levine's TED talk again and that made me feel better. Highly recommended.
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thank you arolsson
It is interesting how negatively western society is positioned with regard to death..
I think hospice somewhere tropical would be too complicated - insurances health are flights specially with covid cost etc.
Often it is not where we are but how we are there that matters..
Hope it makes sense
Hugs.
I wish these hick ups with you were sorted , vivid was over and I came visiting Sweden and you..
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aroisson, I am sorry your have to deal with the struggle of your kids on top of everything else. After my stage IV dx, we discovered our cat was diabetic and needed close monitoring and daily testing, daily shots, special diet, etc., on top of extra cleaning for her throwing up. This was on top of my additional care issues. I don't handle stress well anymore and can't bend over much, so we had her euthanized when we couldn't find anyone who would take her. My vet's office gave me a bad time about it, but the local humane society seemed to understand and was very caring and gentle. It was a tough decision, but the right one. You need to do what is best for you. No one else understands our struggles and we can only pray someday our family will understand.
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aroisson, your comments about palliative on in the beach reminded me of the movie "beaches" with Bette Midler. Have you watched that movie? It is such a tear jerker, but very touching. I had always hoped my end would be the same, somewhere peaceful with close family and friends. Feet in the sand with waves hitting the beach.
(((send you hugs))) and I hope you find what you are looking for.
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Hello everyone, finally returning after a while being gone. Micmel had reached out to me to check on me and she let me know about Pam and Valerie. She let me know a couple weeks ago and I haven't been able to bring myself to coming back to BCO while I guess I was digesting it all. I am so sorry to hear this news and my condolences go out to all their loved ones and to us, their community of sisters and brothers, who support one another so much.
Lynne - so thrilled for your good news. Whew! Some breathing room! Thank goodness.
Mae - I love that funny obit! That is giving me some great ideas
I read someone post somewhere (maybe FB) about MBC and how the scans and the idea of progression are getting less anxiety producing, but the idea of the med changes and adjustments and possibilities of them not working is what causes the most anxiety. I can completely relate to that. At first the scans were so daunting and terrible. Now, it is routine unfortunately. The constant bruises over my veins and weird skin reaction to the tape they put over the injection site that I always get and seems to last for 2 weeks before it disappears. Constant reminders of the possible bumpy roads ahead.
I am hopeful that all or most of us will be in the percentile of folks CAN live years and years and years with this disease. And that the doctors and researchers continue to search for ways to make this journey as comfortable as possible for us.
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Love from Philly,
Re "weird skin reaction to the tape they put over the injection site that I always get and seems to last for 2 weeks" :
You are probably allergic to the adhesive. Ask for paper tape going forward.
Tina, Voice of Experience
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thank you Tina!! I will! I always just have been too lazy to ask, but absolutely will next time!!! I just needed a good push in the tush 😉 😚.
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I agree with Tina. I am allergic to the latex in tape and bandaids which is pretty common. Sometimes it just causes a minor rash, sometimes it has actually blistered when left for a long period of time (after my liver biopsy). I don't use latex tape or bandaids at home. In the medical setting, if I cannot avoid it, then I make it a point to remove the tape or bandaid as soon as possible after the scan or chemo or whatever. If need be, I will replace it with a latex-free alternative at home.
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thanks JFL!
I’m such a silly goose for allowing this to go on for so long. It always is a minor rash/burn looking area on my skin that doesn’t itch or hurt, so I guess that is why I haven’t really thought too much about it.
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Philly, Welcome back. It is good to see your posts again.
I continue to do amazingly well. My liver numbers are now in the normal range. My TM dropped from 3800+ three months ago to 1040 last month. I feel better than I have in a long time. It's hard to believe that I was so sick just a few months again. I know that this is a temporary situation. Adriamycin will not work forever., and I have run out of options.
During this time a few things have popped into my mind. I always said I would never try a treatment that would prolong my life for a few months while ruining my QOL or that the treatment waould not be effective. My fear was that Adriamycin might fall into that category. Luckily, my MO assured me that he would tell me if the treatment was not working and it was time to stop treatment. He also knew that I would speak up if my QOL was negatively impacted by SEs. I have been pleasantly surprised.
Another thing that I have thought about is where I want to die. I know there have been many discussions about this here. I had finally (I thought) decided that I didn't want to die at home because it would be too difficult on my dh. Now I am torn once again as I hear that people are dying alone since visitors are not allowed at hospitals, nursing homes, and hospice facilities during this age of COVID. Dying alone frightens me more than a little. I consider myself to be a logical thinker, and maybe this fear makes no sense. What is it that bothers me? I think that as I move from this life, I need the comfort, the reassurance, the love and support that my dh has always provided to me. Does that mean I need to be home? Pam died well, as she had hoped to do, and I think that being at home was good for her and her loved ones. Can I do that? I feel that so much is out of my control. (This is not a good feeling.)
Last, I have become intensely aware of my mortality. I realize that this is most likely my last spring. I would like to experience one last Christmas, but will that happen? I have gained a new appreciation for daily experiences. I dance more, I sing more loudly, I don't forget to tell my family how much I love them, I pull weeds with a smile on my face instead of grumbling about them, I wake up early and eat a hearty breakfast. I tried to prepare my dh for the loss that is coming, but I have learned that it is better to just enjoy our time together. Lest you think I have become a perfect, smiling woman, fear not. I can still be sad, grouchy and complaining. I just try to enjoy the good things.
I have written a book here and most of it is comprised of random ramblings. Sorry about that.
Hugs and prayers from, Lynne
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o Lynne it is so piercingly well written and so bitter sweet.
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50s Girl.
I beg to differ, kid. For a person, you sound pretty perfect to me.
Tina
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50sgirl, I always love reading your posts so if it up to me go ahead and Ramble on. lol!
I think home hospice sounds wonderful myself.
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50sGirl- I am thrilled that you are having this wonderful response to adriamycin!! I understand this sentiment of yours. Having just gotten over a sudden unexpected profound illness ( DH was still able to visit me in the hospital- they changed that a week later) but, although I was mostly too sick to have visitors for long- I did not feel cut off. It scares me to think of being alone- I have since done tons of blood transfusions and tests alone- I also was struck by how suddenly things can change- I hadn’t prepared anyone- but, can you really ?
I vote for in home hospice- my mom died this way and it was her wish and went well. My older retired sister moved in and hospice came to the house. There were stresses, but, she was taken care of by her kids and some friends-in her own cheerful nest, by her biggest fans. I think you have much more control and less unwelcome intervention. I think DH can stay closer to you and be your advocate much easier from home. I know you will get other opinions, but, that is my preference.
Hugs and happy peace in this interlude of wellness.
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Lynne, so happy to hear that Adriamycin is working so well! One thing about BC, we know it can take a turn quickly and usually associate that with taking a turn for the worst. Well, that goes for a turn for the best as well. Things can improve from a dire situation to something much better very quickly. Great to see you are doing well.
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Lynne, good to hear the current treatment is working and it sounds like you have certainly considered the future in detail. I wish you another Christmas and more
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How wonderful to hear you are having a great response, Lynne!
I also vote for home AND Christmas, my DH couldn't kick me out, even if he wanted to.
I'd ask if there is any immunotherapy combination that might synergize with the good response to chemo, yeah it may not work but it will boost your immune system and has few side effects, and what if it worked? I keep coming back to KattySmith, who got 14 months on immunotherapy-EP4 combo (EP4 is just a next-gen version of Celebrex) and her cancer was ER-positive..
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Lynne, So glad to know this treatment is working for you. Yes to Christmas and even seeing the tulips bloom next spring. My goal was to make it to my nephew's wedding on June 6. It was scheduled two years out, then cancelled due to the virus so now I have to extend my goals. Plus, the granddaughter I never thought I would meet turns 2 this summer. Now I want to stick around to meet a brother or sister if IVF works again.
Home hospice sounds good. I like my own bed.
That said...this illness is exhausting physically and emotionally. There will be a moment when QOL will tell us it's time.
Just not today.
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Lynne, I weeded this morning and because of you, I smiled and realized that I was happy to be doing a normal activity and enjoying that moment.
Many years ago, I purchased long term care insurance..pre cancer. I wanted to stay in my home as long as possible, but I know my DH will become exhausted. With in home hospice where I live, there has to be 24 hour care. So my DH would be so worn out. I have told him that it is okay to switch me to inpatient care..that is what the LTC ins was for. But now that COVID19 could make my death a solitary event..how will my DH decide? Too much to think about. Sometimes dropping dead from a heart attack seems much easier on everyone.
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Iwrite..My palliative RN had me establish goals at my Stage IV dx. One goal was to be present at my 4th grandchild's birth. She is now 3 1/2 years old.
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Lynne so happy to hear the Andriamycin is helping you. I read your post twice and it struck me as a brilliant piece of writing. Thank you for sharing it with us, So many of your thoughts resonated with me.
I don’t want to die at home because I’m stubborn and don’t want my family changing diapers etc. My dh is a good man but somehow we are finding it harder to communicate I’ve had 3 years to make plans and I tell him what I’m thinking and he leaves the room. So I wrote down my requests for dealing with things after I die. Of course he will have to read it???????
However I am at a better place healthwise now. I’ve been able to garden in pots on my deck. I go for walks around my neighborhood. It took a lot out of me And 2 days to do it but it is so good to play in the dirt as I call it. Lots of herbs for summer meals. 2 months ago I could walk a few steps. I had radiation which really helped the mets in my pelvis and sacrum. Kadcyla was great this last time. Hardly any side effects.
Lynne. I will never look at a weed the same way again. 😊. Tina, every time I see Little Lulu I just break out a big smile.
Take care all0 -
Lynne, I too am SO happy to hear you have had good results with this tx! We just never know with this disease what will or won't work, how wonderful to get a good surprise!I have not been on bco lately (couldn't take it when Pam passed), but I think of you every day and hope you are doing well. You are an amazing person and I love your posts. Sending hugs and best wishes for many more good days for you.
LovefromPhilly, Just seeing your screen name pop up brought a smile to my face. Hope you are doing well and enjoying life in spite of this crappy disease.
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I had an upper endoscopy yesterday for my never-ending painful gastritis. Yup, NOT cancer. Right now, several other health issues bother me way more then cancer. Anyway, the paperwork I filled out before the test had a page about DNR's. Do I have one? Yes. Is it on file with them? No. This seems to happen more and more often. The person said I need to carry it with me. Does anyone have a good way to do that? Bracelet? Necklace? I used to wear a bracelet called a RoadID that had lots of info printed on a metal piece. Not much space. They have a system where you can store some info electronically like a DNR and they will print a code to access it on the bracelet. Will an EMT be willing to go through the process to get it? I've heard of other systems like this but forget the name. Was it here? I feel compelled to get this done. I have a DNR but it will not be used if I don't have it with me somehow. How?
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Janet,
I found this website but did not look at particulars as fas how much can be printed on a bracelet or necklace. https://www.laurenshope.com/customer-resources/dnr-jewelry-explained
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