Time for hospice and Im really scared
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Liz, went off of it cause thr se were crippling, in bed all the, lost weight , my qol was non existent. Stable, I have no idea. Sorry a bit depressed this weekend...
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Eshinall, I also was diagnosed stage IV in Jan 2012. At the time I was told that chemo would be held off till I needed it. Well a scan back in Jan 2014 showed a node on my lung.The scan in April showed that the node had grown so it was time for chemo. I was really upset to be starting chemo. Started Gemzar infusions. First one tried it by vein cause I didn't want a port. Vein infusion was painful so got the port implanted. (outpatient procedure, was put under so had to have a ride home afterwards) So far it hasn't been bad. 2 weeks on one week off with minimal side effects, hair thinning, nausea, a little vomiting, of course some fatigue. The infusion it self only takes about a half hour once the nurse sets you up. My most recent scan according to my onc shows that I am stable. I did ask her what was next if/when the chemo stops working for me and she told me that it is possible that I might go back to an anti hormonal. I will worry about what is next another day, so far I will enjoy what I can still do and just keep on going (with a pity party every once in a while)
Charlotte
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I know that many of you who post here would want to know that Linda died on Saturday, August 16th. And I realize that you may choose to share your thoughts and condolences here, where she was such a strong presence. If you would like to share more at the topic I created to share news of her death, you may find that topic at https://community.breastcancer.org/forum/8/topic/823772?page=1#idx_1. Like many of you, I am filled with sorrow over her death but so very grateful to have known her, and to have had my life enriched by her presence, through BCO. She leaves a powerful and loving legacy.
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Brenda,
I am simply in shock and can't write another word right now.
Caryn
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I feel the same way. I only post here occasionally, but read this thread almost every day. I just burst into tears when I read your post Brenda. I don't know why I am shocked that things happen so quickly, but I am. What a beautiful tribute you wrote to your friend.... I need to find the quote of the day thread. I learn so much about living AND dying from just reading the words that you and everyone else writes here.... thank you.
Andi
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Linda,
I will ever think of you when I am outdoors. May your memory be for a blessing - you and Teri have helped me so much through your sharing of your feelings, thoughts, experiences, and outlook.
Janet
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Enjoy this new adventure Linda - body free and pain free! I enjoyed your perspectives and love of everything. May your family find peace in your memories and love. Blessings all around.
cindi
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RIP Linda!!! I have no words I am in shock. Goodbye and God Bless to Your Beautiful Spirit.
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Brenda, I read your post and couldn't help a sharp intake of breath. It seems so quick. I did wonder if she was failing as she didn't post, but somehow, this seems so fast. Thank you for letting us know.
Rest in peace Linda. I will remember you.
I am sitting here with my daughter's little hedgehog in my lap, wrapped in a towel, trying to feed him through a syringe because he has developed jaw cancer and I can see that he is starting to have trouble eating. The vet tells me that he is not in discomfort and I can see that his eyes are bright and I can hear him running on his wheel at night, but it seems so wrong. So unfair. Soon I am going to have to make decision about this innocent small being in my lap who is busily trying to dig a new nest in his towel as I write. He's seems so full of life, but it too is coming to an end. Cancer is awful.
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Oh Hortense it pains me to read about your little hedgehog. I hate this disease. My heart was broken when I learned that Dear Linda left us so soon. I was so looking forward to reading her story. There are so many people with this disease that are not doing well. I think I have been going around with blinders on because everyone has been doing so good. Now I am starting to fear this awful disease again and I don't like this feeling. Hopefully I can get back to my warrior mentality and continue to fight. Hugs to all, Cynthia
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Please don't fear, Cynthia. Take the best care possible of yourself and try to enjoy life. If blinders are necessary to give you peace, put them on. (((a warm hug to you)))
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Hortense - I hope your little hedge hog is pain free. It's hard to watch them decline.
Cynthia- I hope you have regained your spirit. Very cute little dogs you have.
The end of summer blooms and the loudest crickets we have ever heard at night time, make me think of Teri, and her love for the nature.
May you all have peaceful end of summer days. The leaves are just starting to change, tips of some of the trees leaves are golden and red.
Peace to all.
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Ughhhh, I am so incredibly sad about Linda. I was in the States for a few weeks and transitioning back to the Middle East in early August and just now logging in, I missed her post about hospice. Thank you to dear april485 for sending me a PM to let me know about our wonderful Linda. I'll never garden again and not think about her. She was such a strong support to two lovely ladies I got to know and love on these boards, Cindy-Rose and Teri. There is a special place in heaven for all of them, and I like to think they are frolicking there now in an amazing garden, surrounded by sweet animals and lovely flowers, something all 3 of them loved.
Love and peace to all of you wonderful, strong women, my heroes.
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Rosevalley - Thank you. The little hedgehog is pain free now. I asked to have him put to sleep on Friday and buried him next to another pet under a Japanese wisteria tree. It is so hard to have to make that decision, but as the vet told me, it is the kind thing to do. Fortunately, with our creatures, they have no idea what is happening to them when they become sick. It is up to us to judge when they no longer have a good quality of life and he was approaching it quickly. I was up at 3 am making sure he ate properly - he was nocturnal - which was alright with me, but when his appetite suddenly slowed down, I knew it was time.
I wonder if I will be able to think so clearly about myself? Right now, I want to be sure that when my time comes to decide about Hospice that I do not wait until I become a burden to my family, and I do not want to be in pain. My nurse-friend's mother had the right idea - her health care directive said that she wished to be put into Hospice immediately when her care became a burden, but what courage the woman had. She also wrote into her health care directive that she did not want to be in pain, therefore she wanted to be medicated enough that she was no in pain, even if doing so shortened her life.
Right after Labor Day, I plan to jot down ideas taken from this thread in order to write a new health care directive that reflects how I feel. My husband and I will be writing new will, so it is the right time to write a Health Care Directive. I have never had a proper one. I've just relied on my health care proxies which I have learned is not enough.
Meanwhile, I am enjoying the sights, sounds and smells of the end of summer - which I wish would last forever!
Best to all of you. Sarah
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Oh Hortense, I am so sad to hear about your Little Hedgehog. My spirits have lifted somewhat. I went to church with my hubby on Sunday and that is something I rarely do(go to church) even though I am deeply spiritual..The health care directive sounds like something I need to do for myself. I have told my family my wishes, but maybe I should write them down. I Love coming here to visit you girls!! Hugs to You All, Cynthia
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Thank you Bon. This is helpful also. It goes over all of the things that need thinking about so that a health care directive can be tailored to each person's wants, needs and beliefs:
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hortense--so sorry about the little hedge hog
I'm guessing with each animal it doesn't get any easier. Sigh.0 -
Kjones - Thank you. No, it doesn't get easier, does it? Even if the creature was really small and spiky and belonged to my daughter. Taking care of it, especially late at night, created an emotional attachment that's surprising. I have had horses and a popular saying is the outside of a horse is good for the inside of a man. I think that is true of most animals we take in and care for. There is something comforting in touching and being with something living that trusts us.
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so sorry about the hedge hog...no matter what kind of animal it is, you can grow attached....Hugs Hort.....0 -
Hortense- I am sorry about the little hedge hog. They are precious. You did the right thing, but it is never easy. My Aunt just put her 21 year old cat down yesterday. We are animals lovers to the marrow of our being and it's so hard. My husband and I have tried to keep our 17 year old terrier mix together all summer. The other day she slipped and fell on the wood floors and flailed to right herself - like a upside down turtle. I scooped her up on to carpet and sat with her. She was frightened and panting. She can't see very well and she can't hear. It's coming time, but we are loathe to do it. When I see he resting her bones laying out in the sun shine on these hot days.. I just smile and let her be.
I have been up since 4am.. got to sleep past 11pm. I laid there until 5:30 when I decided it was hopeless and no more sleep was to be. My Aunt had a bone scan and they think they found a bone lesion.. no comfirmation yet so I am praying they are wrong or she joins club mets with the rest of us. She just finished chemo for BC not 2 months ago. A relative fighting a different cancer told me yesterday that the battle is drawing to a close. She has her pain patches and no more chemo, as it isn't working. She is exhausted and tired and ready - trying to do Christmas shopping on line for her family. We email every day. I will miss her. My Mom is sliding into dementia and conversations are just pitiful.. she tries so hard to remember what to say or do. She tried to leave a a voice message the other day. I could hear my brother trying to coach her on what to do. She said,"but no one answers, no one is home." My brother said "leave a message and she'll get it." My Mom asked,"oh she will, so I talk now?" It broke my heart to hear the exchange and how something so familiar and done a million times, was now foreign. My Mother used to be quite the map master on road trips and independent and creative. I feel like she dies a little bit every few weeks.. her voice is the same. Life is hard. It is so desperately difficult to love people and animals, and not get so attached your heart just breaks.
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Rose so sorry BIG HUGS!!!!0 -
Sarah, sorry for your loss of your little sweet hedgehog.
Sarah and Bon thank you for the links they were very helpful as I am in the works of writing my living will. There were many things in there to consider that I had not thought of earlier.
I am too so sad about Linda's passing. I have been away from the boards for a while but take comfort in coming back here to read all of your stories. Thank you girls for keeping Teri's thread going.
Tilda
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Thank you for your empathy ladies, it is very kind of you. I am missing the little hedgehog. I glance into the room he lived in and half expect to see his cage and him again. He was an endearing little creature.
Rose - I wish I could hug you. You are facing so many things at once that it just isn't fair. Tonight I can not find the words I would like to send to try to comfort you, my mind is in tangles and my words are not being typed right. In twenty minutes I have erased and corrected more than I have written - darn chemo brain. Please take good care of yourself.
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Ooohhh, so sweet! Thank you KJones.
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hi all,
I have been lurking here lately although I admit I am not as regular as I was before. I really enjoy and learn from everyone's posts. Sarah, I think about writing a directive too but have not been able to get started. I like some of what you have discussed and hope you will share more thoughts and ideas as you are working through this. I had a progression "scare" that maybe turned out not to be, snd I think, after all the dust has settled that I have come to the conclusion that longer on easy non chemo treatment is the way I will choose even if it means less time overall. I guess this theory will be put to the test the next time I have rising tumor markers with no clear change in CT scan. I am sure it will happen again and I will have to negotiate with my oncologist then
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I have been thinking about all of you and hope everyone is doing as well as possible, free of pain and enjoying each day. Goats still make me think of Teri, and I smile at the thought.
I've been busy emptying my mother's house. It's so hard to make decisions about what to keep, what to donate and to get people to make up their minds about what they want to take. My sister didn't want a thing, but now seems to want a lot. I don't mind, I just want her to commit to taking whatever it is she wants so I can figure out how to get the rest out. I keep bringing small items to area thrift shops. Now, I have to start getting the larger things out. I may put them on Craigs List for free. I did that once before and met some lovely people who really needed the stuff.
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Hortense- I looked around and found a place called "Helping Hands" that gives donated items away to the needy for free. The people come and shop in a nice store and take their items home while being treated like any other shopper. I now take especially kids things,home items there. I think if you need a coat and it was given away freely, then a kid should go pick one out. period. (It's run by volunteers and the united way)
I also found a church that gives away items and I have left things there too- free. (bunkbeds etc.). We also give many things to the Women's crisis center and they will hook up with families who need certain things. Many of these women escape leaving all they own behind and have to start with nothing. It's hard giving everything away, lots of work.
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Rosevalley, you are a woman after my own heart. I gave practically everything of my mother's away to charity right after she died. It took months as the house was full, but as I went through things, I would load it up and take it to one thrift shop or another. I had the larger pieces delivered to the stores that could take them. I even listed some furniture for free on Craigs List and gave it to people who really needed it.
We have a free local clothing store and food pantry too, that provides a dignified way for people to get needed clothing and food. I have run food and coat drives for it in the past, and even helped children pick out their "new" winter coats there. Unfortunately, people take advantage of it and greedily fill bags with the best clothing that they resell.
Yesterday I brought all of the rest of the china in the house to the Salvation Army store nearest me, which is beautifully run, and in the two days before that I brought things to the thrift store that supports our local battered women's safe house, The Retreat. If my sister and cousin didn't need things, I would have given everything else to it. If anything is left over, it will go there. My mother raised us to do what we could for others and it is deeply ingrained in me. I hope my children carry on that tradition.
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Thank you. Actually, for the most part I have found going through my mother's things to be soothing. I get to remember so many good times and it has helped me understand her more. In a way, I feel close to her as I wander around her house.
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