Time for hospice and Im really scared
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Linda so glad u checked in. I myself a month ago decided to stop treatment bc of the se. Someone came n wanted to talk to me about what now, not ready for hospice yet, so the next step is the step before hospice. Very glad and at peace with my decision, it gives me more control over my futurem cancer has tried to take over, not going to let it. I am trying to live everyday smiling, only obstacle is I am on oxygen 24/7so it sort of hampers things a bit. Also if I had money I would b traveling, going through my bucket list, lol
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Blondie, reading your profile, it sounds like you have been through the mill several times. You have my sympathy. It must have been rough. You know yourself the best and I am sure you have made the right decision. I hope that while you may not be able to travel that you are able to enjoy yourself each day. I have a friend on oxygen and he still goes to parties and out for jovial lunches with friends. He can't get around the way he used to, someone drives him, but he sits in the midst of things and has an absolute ball. People come over to him because he's happy, funny and very upbeat. He is clearly failing and his days are limited, but he is making the most of each one. I just get a bit nervous when he lights his cigar while wearing his oxygen tube on and with the tank next to him! I think that's a no-no.
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Smoking with an O2 tank??!!! He could go out like a Roman Candle and everything around him with it! I would ask him not to do that around others.. cigars in the privacy of his own dwelling - his call. Whew. I would so leave the room! Scary.
Yes live for the moment. Future will take care of itself. Knowing when to say enough is enough is an art form. When side effects and life in cancerland make you more miserable then happy, or when it takes too long to recover from all the fun and games- leaving you wondering WTH? Then it's time to call it a day. I really think life in cancerland is like the little kids games candyland and shoots and ladders.. roll the dice up 4, roll again -back 3 on and on... Someone should make a spoof cancerland game out of a candyland board and do it the way we experience cancer. Leave it in chemo rooms for diversion. Cancerland is really a different reality from normal life especially for stage 4 folks since you can never escape the big "C's" reach -except in your mind!
Stay cool - hot here!
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thanks I agree, the nurse came today and they since I stopped treatment want me to go on hospice, I will think about it...they are advantages, will discuss it with the drs.....cancer sucks....0 -
Linda, I hope you have been able to enjoy your day and are comfortable. I think I am going to stick to posting on this thread, but I will be keeping you in my thoughts.
Blondie, you are right. Cancer is awful. Are you feeling any better now that you are not on treatment?
Cynthia, I think of you when I see my hummingbirds. I only have Ruby throats, you may have other kinds, but the tiny creatures are wonderful to spot darting around the yard or coming to the feeder by my kitchen window. They look so put out when they see me and will often back off and leave, but they come back fairly quickly. It is surprising how they can express their feelings. They definitely have expressions on their faces and combined with body language, they can make themselves quite clear. Later in the summer they fight over the feeders and dive after each other. One will really give another a hard body slam and I can hear their beaks clicking as they fight. I had no idea such little birds were so argumentative.
Best to all, Sarah
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Yep I feel like my old self and my friends and family are glad that "I'm Back". If the breathing would get better it would work. Thanks for asking0 -
Good Morning all. Linda I hope you are pain free and enjoying this Beautiful Saturday. Blondie you are right cancer sucks, you are in my thoughts and prayers if that's ok. Sarah I don't know what kind of hummingbirds visit my feeder but there are a lot of them. I had to move the feeder because it was close to my large picture window and I keep flowers in my living room. One day a little hummingbird flew into the window thinking he could get to the flowers. Sadly he died. That broke my heart so I had my husband move the feeder and I moved the flowers. Hugs and Love to You All, Cynthia.
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Hi Linda,
Thinking of you today. I am hoping your rough patch is over. I hope you are pain free and with your loved ones. wishing you peace!
I'll be following you eventually. I have had issues with edema. Keep ruling out this or that. Then the onc did a CA-125 for ovarian cancer which came back 100. It should be less then 30 and mine was 30 in 2007. So who knows if that's got anything to do with the edema, but it would be my luck. No more surgery or chemo for me, so what difference would it make. My Mom had a huge ovarian tumor that was benign and I had a Great Aunt who had breast cancer and later died of ovarian cancer. We have shitty genes, SOL. So lots of fun and games in cancerland.
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Rose u r so right.
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Hi all, I have been thinking about you and wondering how you are doing.
Cynthia, I am so sorry to hear about that little hummingbird. I would have been devastated. I was watching ours yesterday afternoon and could hear them fan their wings in warning and also their sharp chirps as they tried to chase each other away from the feeder. They have loud voices for such tiny creatures.
Blondie, I am glad you are feeling better off all that chemo. Nasty stuff.
Rose, I am so sorry to hear about your recent unsettling findings. Maybe it will turn out to be benign.
Linda, I am wishing you peace and contentment.
Best, Sarah
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I don't remember reading about anything having to do with a humming bird. I was just watching one in our backyard flitting from daisies and cone shaped fushias. They move so fast. We see them up at the cabin in the deep forest and can not figure out what they eat up there except for foxglove - then what after the foxglove is done? My daughter told us how 2 raccoons climb down on to the roof of the car port at their condo and bask there laid out sunning themselves -this is downtown in Portland! She is charmed to watch them since they are on the 5th floor and have a great view of them. I LOVE watching wild life. The last time we went to our bird sanctuary we saw Eagles and a big fat beaver motoring through the water. I kind of wondered if an Eagle would go after a beaver probably not, they are pretty big.
I wish everyone a day filled with wild life. Thinking of you Linda and hoping no more rough spots. Wishing you peace.
Blondie I hear you. Funny I used to live in Philadelphia, 20th and Delancy right down town, first apt after college. (4th floor no elevator) It's interesting to see Folcroft and know where that is even! Small world. I understand your perspective and feel much the same way.
Hortense I will assume that any elevated numbers on my labs are just blips on the radar. So many things can raise those numbers, inflammation, infection any number of things. It's not even that crazy high. I am not looking further for more trouble; I figure I have enough, more wouldn't change much. How are your baby foxes did they grow up and take off? Those were wonderful photos you shared.
Blessings to you all. Hugs cindi
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thanks Cindy, small world!!0 -
Yes it is a small world. Now that I live on the other side of the country in Oregon, sometimes I think about things I loved about Philly. The art museums, Barnes Institute, Redding terminal market, street vendors, South Street music, film and art.. on and on. It's such a different place with so much history, old streets and wonderful architecture. To walk the narrow streets of Philadelphia while it's snowing is just magical, all those historic brick town homes with their leaded glass windows. It makes you feel like you are transported back in time hundreds of years! The physical beauty of Oregon is fantastic though and I do love it.
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Yep it is awesome and people come from all over the world to visit here...0 -
Hi all and especially Linda. I have been away for awhile and it is so nice to come back to this thread and catch up with everyone. Linda, I hope you are having relaxing times with your husband and that you are not uncomfortable in any way - physical or emotional.Today, I drove up to the Seeing Eye in NJ to watch my puppy, Wendy, have her Town Walk. It is a sort of graduation where you get to watch them work with the instructor. Next she goes into a pool of dogs that are candidates to be matched with a blind partner and train together for a month before truly graduating to live with their partner. They work really hard to make good matches so there are 50 dogs in the pool for 20 people. If she is not matched in this cycle she goes back into training and tries again in the next class. I know this sounds silly but I was away a long time today so I am trying to stay up so that Rana, our current trainee does not have to go to bed yet as bed is still in puppy prison (she is only 4 months).
On another note - do you ever think about what "artifacts" you are leaving for your family? This has started to be a recurrent thought for me. I read about someone who was making videos and it sounded like a neat idea until I realized I would be totally self conscious. What I really need is for someone to capture candid video - but that will never happen. I thought about writing an "ethical will" but that too seems daunting. When my daughter started high school they made the parents write a letter to their kids to be read privately during a special time during orientation. I had trouble writing that too. But yet I feel this tug that I want to leave something. Is it just my over controlling nature that I don't want to let my family and friends each have their own memories of our times together and that I want to manufacture something? Or is it fear that I will be forgotten when I am not actually here? I think maybe I also want to have it so that I too can enjoy memories of good times when I get to the end and maybe am not as comfortable, active or happy as now? I don't know.
Janet
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I have wondered about leaving things and then I think back to my own childhood. I kept cards and photos and things that folks I loved had given me. I am the only one who would have understood their importance. Then it hit me that I could let everything go and all those memories are right with me. I don't need the physical items. So much physical stuff we carry around with us and it's a terrible burden at times. Like furniture you keep because it was your Grandmothers.. but not really your taste. Letters tattered and worn.. decades old.
I kind of like the Buddhist monks who do the crazy elaborate sand paintings and then blow them away... impermanence. I will be remembered by those I loved and lived with. Then when they leave I will go with them. I will fade gently into the archives of my family in mannerisms and thoughts carried by my kids and their kids. No one will remember where these ideas and traditions, behaviors and values started.. too far back. My Mother, Grandmother, Great Grandmother, Father, Grandfather and Great Grandfather all adding to our mindset/ personality of what makes our little part of humanity unique. That's enough legacy for me. No marker, no memorials, no blog in the paper.. but living on through your family.
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I am not one to save and collect lots of "stuff". When my mom passed away last year. I kept jewelry that I remember her wearing and some other odds and ends that reminded me of her. I also kept a large wooden bowl that my grandmother used to chop things in. As for the stuff I do have, my girls can just decide what they want to keep (hopefully someone will appreciate my vintage mesh purse collection). But as rosevalley wrote, I do love the idea of living on through my family.
Caryn
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20130502 - I thought later that I should add something to my post about not wanting to leave things when you die. That isn't entirely true. I have a mildly retarded autistic daughter who adores picture albums. In order to get her to tell us things we made picture books of places familiar to her and that was the only way we could get information out of her when she was young. I have a album started for her because her world is concrete and pictures help her get her mind around things. I guess what everyone needs to do is consider the person you are leaving something to. All families have traditions and each family will be comfortable with their ways of doing things. I love that. It's what makes the world so rich and varied. So enjoy your quirky wonderful traditions what ever they maybe... no apology or justifications. Many paths up a mountain.
I am feeling blessed tonight. I went shopping for valances and after painting a bedroom all day, tired and sore - I found what I wanted! Yay! As I waited in line behind a Mennonite Mother and daughter, the man in front of them clearly had lost something. He also had some kind of neurological disorder.. maybe Hunningtons (sp?) his choppy sudden jerking movements were spreading his purchases all over. In a fit of embarrassment he had dropped something, (I found it and gave it to him) but he left the pay-out line to regroup. Then went to the back of the line to try again. Everyone told him to go to the front of the line and he graciously accepted, paid and left. His burden was high and stressful. I felt his pain and thought, you know I would rather have my burden than that. Not often cancer looks better then something else! It also made me smile to see the kindness of others in line. Gentle acceptance and smiles.. no grumpy impatience. Nice!
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Rosevalley, I love your post from August 7 regarding what we really leave behind. I came back to this thread to print it out so I may reread it often. Impermanence; I love it. I wish I could express my thoughts as well as you. Thank you.
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I think I did not express myself very well. Not yet at the point where I can hold my memories without triggers, I had not realized this to be not true for others. My dad is like you, he did not need my mothers things to remember her, but I have no idea how often he thinks of her and I find that stumbling across things like old letters from camp brings me very pleasant memories of times I had sort of forgotten. I like the idea of letting other choose what they save but I was really writing about leaving something specific, like an ethical will if only I was better at writing one. Sorry for the rambling. I am feeling kind of edgy today, came to read her and am feeling even more so as I struggle with my dependence on "stuff"
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Linda,
The light is streaming across my Buddha garden, dancing on the leaves of the plants. So beautiful to see this in the early morning. The heat is supposed to break to day. It was 100 yesterday! I hope you have a view of your lovely garden with it's bird bath and stepping stones. I wish you peace and painfree days, with friends and family.
Hugs and Love,
cindi
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Hello Linda, All. Just stopping by to say Hi, and You are all in my thoughts and Prayers!! Hugs and Love to You All, Cynthia
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Linda, I think of you during the day and hope you are resting reasonably comfortably. I know you have a strong support team which is the best sort of care. Best to you, Sarah
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hI Linda thinking about you!!
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Dear Ones,
Our home sits next to the James River in Virginia. Here the James is wide and on most days calm. There isn't too much traffic on the water but the birds, deer, raccoons & turtles more than make up for the quiet. Recently a large barge has appeared on the other side of the River, we think they are dredging the channel so larger boats might pass by more easily. They leave two bright lights on at night, I guess to avoid accidents and vandalism. From our spot across the water the lights aren't so bright as to bother or keep us awake, they actually twinkle like two stars hanging more close to us than they should. Lately, when I lay awake in bed at night, I watch these special stars and, as I did when I was a little girl, I recite the little wishing poem:
Starlight, star bright, first star I see tonight, I wish I may I wish I might.....
Now, we all know that I can't tell you exactly what I wish for, lest my wish not come true. I don't think I really need to tell because we share so many wishes together! I hope that you can all see a star tonight and come up with something wonderful to wish for. I hope that you can see the stars too, Linda. They are very bright tonight. But no worries if you can't see one, I made a special wish for you.
{{{hugs to all}}}
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beautiful scenery Vadre, so peaceful! I hope for each and everyone one of us finds peace from within and may our wishes come true . We will keep wishing upon a star so hope will always finds its way to our heart. Linda , ihe you are comfortable and pain free. Love to all.
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Love the pix so peaceful looking
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Hi Blondiex46,
Did you go off chemotherapy because you didn't want it anymore? Is your disease stable? I was diagnosed with Stage IV in 2012 and have been on Femara, Aromisan/Afinitor, and Xeloda, which is no longer working. I think my once wants me to go on IV chemo and I'm petrified of IV chemo because of the S/E and that I have never heard of anyone becoming NED after IV chemo. I have never been NED. Just hoping for more info.
Liz
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eshinall - Liz - Why don't you write a new topic called - Time to start IV chemo scared need encouragement. Say what you did in the above post. Then see what the other women on the board have been through and the treatment responses they got from it. Then you will be better able to make informed decisions. Good luck. Wish you the best.
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eshinell I had chemo abraxane, and have been in remission for over a year. It was Very easy on me and my hair thinned but never completely fell out. My mo tried me on Taxol first but it was causing my nails to turn black and neurothopy in my feet. Now I am on Femera with monthly Zometa for my bones. I hope you find a good treatment to get you in remission. Hugs, Cynthia
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