Time for hospice and Im really scared
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Sending you peace and strength. Change is always scary, and this is a big change in so many ways. I hope you'll stay here with us.
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Teri, I am here to support you. There is actually evidence in the medical literature that some patients in hospice care tend to live longer than they would have if on treatment. Hospice will keep you comfortable. My PCP/Palliative care doc had her social worker contact me with information about several hospices in the area, only one of which has inpatient services, one has a hospital floor, and the others are all outpatient based, meaning they come to your home. They can help set you up with the help you will need, maybe someone to come in each day to help you feed and care for your animals. Maybe you will enjoy that more than going to doctor appointments.
There is another friend here on BCO who was in hospice for a while, got better and went off it to try more treatment, then decided to discontinue and went back on hospice. That was nearly a year ago, and she is still with us. If you decide to do hospice, you can always change your mind, especially if one of those new drugs gets approved!!!! In fact, that would be a reason to come off hospice, if you and your doc thought you might benefit from a new treatment.
I truly understand the second-guessing stuff. I have been second-guessing every decision I have made except one. The one I am most at peace with is the refusal to do rads. In my heart, I don't think it would have made any difference in my outcome, but would have just added yet another misery to my existence. I have done chemo, surgery, more surgery, multiple hormonals, zometa, and now afinitor. My experience with afinitor has not been too bad, but if and when it is no longer effective, I worry about what other options are available as I absolutely will not do chemo or IM injections or more invasive stuff. So this is kind of end-of-the-line for me at this point, and it is a scary one. You are not alone, and you have helped me realize that I am not alone. Thank you for starting this thread, and I will be here for you. If you ever want to talk, please PM me.0 -
You are in my thoughts and prayers, Teri. No words of wisdom, but some of the other posts are very encouraging in terms of hospice care. I hope you can feel our love surrounding you and that it will help you to feel a little less alone. We're here when you need us and we are thinking of you. Hugs, Amy
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Teri, Please do continue to post right here with us. Dont feel as if you need to post elsewhere as we are here for you. So many changes...but somehow you will get through all of them. The home hospice sounds like an excellent idea. Were you only considering a placement type, where you go somewhere else? I wasnt too sure which you meant. If you were at home perhaps you could pay someone to come in and take care of your animals when you cannot?
Granny, I loved your post too and I am sure it comforted Teri. It was great info about Hospice and I think it made all of us feel comforted since its probably in our fiuture as well.
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Teri
You are not a "wimp"! S/e's of chemo can be awful. Some people don't get them, some people can tolerate them, it is different for everyone. If you don't want to do more chemo that is your choice. It is just so unfair that this disease makes us choose.
I think forestdweller makes some good points about your dog, that transition for you would be hard, but you would get to see that your four legged friend can be happy.
I am sending you hugs and positive thoughts Teri
Dawn0 -
Terri,
I had 2 big flat-coated retrievers that I just couldn't physically be the best dog mommy for them and I was so fortunate that my nephew took them both. He is 2 hours away so I am able to drive to visit. The last visit I had with him and them, the dogs were happy. They got more attention, more play time as they were added to the household that had 2 dogs already and 2 teenagers! It really broke my heart to let them go to a new home but I knew they would be loved. I was lucky I know. Just wanted you to know that the animals will and can transition to a new family/home if its something that can help you or it gets to be too much to take care of them. This disease keeps making us let go of important stuff in our lives. Maybe its to help us let go of it when its our time. I know without a doubt that you are not alone, no matter what or where you are. Keep reaching out to stay connected and there will always be someone there.
Linda
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Hi Terri,
Just about nothing wipes me out more then someone having to be separated from their dog - especially a Golden..Love Them! Cancer has taken enough from us all. As long as he/she is not agressive or nasty I am sure we could work something out. So that you can keep your dog with you as long as you like. I live an hour and 1/2 from you.
I have some neighbors who rescue only senior Goldens and see them through to the end of their 15-16 years. They lost their Mom to brain cancer. They are also just about the nicest folks you would ever meet. My cousin also worked for the NAPA Humane society, has a rescued senior golden, a smooth collie, a border shelty mix and recently rescued ancient chihua hua and she lives on a farm! (She's a nurse). What's one more dog? We have 3 dog, 3 cats, 1 rabbit and a canary...and 3 kids. My husband would shoot me. But I know lots of folks who love dogs as much as we do. I would love to help out in any way helping you find a home for your dog.
But with that said you need to keep your dog with you as long as you can.
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Capriness- this was a catharsis (sp) in a way. To cry and let it all out. Then go on and take some time to experience some little things in life. Nature for one. A pet if you have one. Eat whatever you feel like ( favorite foods or shakes) if it does not make you sick. God bless.
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Teri, I really don't know what to say. I just want to give you a big hug.
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Teri, sending love and support for you........as has been expressed many times over, we are all here to hold your hand. Please dont worry about your babies for now as of right now, they love you and can be a great help to you in that unconditional love that all animals offer.
The word hospice is really scary as it seems that is the beginning of the end but that is not necissarily so. As Linda a stated, many have improved enough in hospice to return to active treatment.
Post here as often as you need as there are many here to talk to.
Love n hugs. Chrissy
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Teri - sending you love, hugs and lots of support. I am hoping for you that there is a way to have home hospice so that you can continue to be with your babies for a long while to come.
As you can see from all of the wonderful posts, this is your home. You should continue to post here for support, encouragement, friendship and know that you are not alone.
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I just can't believe all the support I've gotten on this forum. There's no way I could change over to the hospice forum.
Thank you, thank you, thank you EVERYONE!!!!! I love you all for being here for me. Sometimes I'm nowhere to be found because I'm feeling so messed up I think there's nothing I could say that would help anyone else. But then like here, I see that you don't have to have specific advice. Just be there.
So, once again, thank you. Tomorrow I start my search for the perfect hospice program. I'm not as scared as I was before.
Teri
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Big smooch to you, Teri, and to your furry kids too! Good luck in finding something that feels right for you. We'll be waiting to hear more!
Rose.0 -
Teri, I have no good advice (or even bad advice), but I want to send my best wishes. I hope your search finds you a place where you can keep some of your animals.
Pam
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Hi, Teri,
Of course you have been nervous, and of course you have been feeling fear, although I am glad to hear that you are less fearful now than you were in the beginning. You have found yourself at a turning point in your life, and the unknown can be quite unsettling. What you have been experiencing is normal, although knowing that doesn't necessarily mean that you won't have challenges in facing this time in your life. You are an intelligent person, and like many of us after mets has been diagnosed, you probably conceived of your life as likely to be shortened by this awful, awful disease. I think we often know certain things on an intellectual basis and hope that will prepare us in some way, then WHAM! the emotional part kicks in and often hard. Then what to do: Try to "buck up and stay strong"? Notice the emotions and express them as it feels safe to do so? Let go and feel the full force, hoping to survive? I imagine that one of the reasons you were able to cry is that you felt the love, compassion and support from so many who genuinely care, and that made it "safe" to let go a little (or a lot).
I agree with an earlier poster: there is evidence that many people who enter hospice have both extended quantity of life and heightened quality of life (for example, in better symptom control and less distress). As a matter of fact, research suggests that hospice care is strongly associated with increased survival; people live longer if they have their symptoms well managed and under control, they plan for various outcomes (including death), and they start working on concerns that promote their dignity. You might want to interview several hospice providers in the process of finding one that is the right fit for you. Also, you can receive hospice care at home as long as you are able to maintain independent living safely. Years ago hospice providers would make admission contingent on having a caregiver in the home, but that is generally not the case now. You also are allowed to have a network of friends and family who take turns in providing care at your home in the event you do not have a primary caregiver. You might want to ask if the home based hospice provider is affiliated with an inpatient hospice program (which makes it easier to transition to out of home care when the need arises). Some of those programs are found in hospitals, but many are located in freestanding "hospice house" type programs that feel more like a home (rather than an institution) setting, and many of those programs allow visits from pets. (For more info about hospice, you might want to check out www.nhpco.org .)
As far as the second guessing goes, many of us do that. How many times do we have the benefit of hard earned wisdom or the challenge of mixed feelings when we look back on previous decisions and wonder if those were the right decisions to make? Even though we know that life does not come along with its own "playbook," learning while living is still hard to accept when faced with tough choices and specific consequences. I imagine that you have done the best you can in facing the choices that have come your way, and I see you now trying to do the same. Trying to stay focused on your options at this point in your life, rather than revisting those of the past, will help you to avoid thinking that is "crazy-making." You already are experiencing enough challenge right now without adding to your stress (yes, I realize that is easier said than done).
And I imagine that many of us not in your position as well as those who also share your circumstances often struggle with feeling alone. Personally I think that is part of the challenge of dealing with life limiting illness, and even when we overcome feelings of being alone or lonely in our struggle by connecting ourselves with what matters to us (people who understand and whom we trust, nonhuman animals (!), nature as a whole, another universal force or power that holds meaning for us), when we face a new challenge we may feel alone again. I think that is part of being human--that tension between feeling alone within ourselves and the urge to connect with what brings our life meaning.
When I think of you, Teri, one of the first things that comes to my mind is one of my grandmother's sayings: "That woman has real spunk." You do have spunk, and that will help you along the way. And you don't have to be spunky all the time, nor do you have to be spunky all by yourself. I hope you will continue to let those of us here who care be a support to you, and I hope you connect with others, whether through hospice or otherwise, who will offer support and caring as well.
Holding hope for you each and every day,
Brenda
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That was a beautiful, eloquent post, Brenda. Smooch to you too!
Rose.0 -
Brenda...wow! That was beautiful and useful. I can't thank you enough for taking the time to write that. You know I'll be re-reading it many times when I need a pick-me-up. You hit the nail on the head many times. Are you psychic?
Like about not revisiting past choices. I felt the same way when I decided to have bilateral mastectomies - one of which was prophylactic. As they wheeled me into the operating suite the surgeon said I could still back out if I wanted to. I told him no. I was scared to death but back when I made the original decision I was calm and in control. I told him I needed to trust the calm and in control decision - not the freaking out scared to death decision. Well it's the same with my decision to not continue chemo. I didn't want to be in pain and throwing up, etc. at the end of my life. I wanted the end of my life to be as beautiful as possible and I still think that was a good decision. It's just human nature to be scared of dying. I'm not scared of death, just the process because it's unknown.
Sorry to rattle on. I just really loved your post. Thank you so much.
Teri
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Dear Teri,
Each new phase in our lives come along with worries, suspicions naturally. Especially when it's not something we are looking forward to, hospice for God's sake?!!!!!!! Know what, each one us on these boards will be at that point someday with the same feelings, worries. I hope & pray fror you and the rest of us we can pass through this phase comfortably surrounded with our loved ones ( hey including us here!!) before our next journey.
Hugging, loving & thinking of you.
Ebru0 -
Just adding total agreement with the other posts. Such wisdom and support. Think it probably helped all of us think about our response to such a decision.
There must be home based care you could use, keeping your animals round you is part of your support and friendship circle. Just cos their not people doesn't remove their high value to your love and support base.
Brenda had some amazing advice to think about.
Moira
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Ducatigirl I find your post inappropriate given the discussion. I've asked the moderators to review.
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Capri,
I have been thinking about you ever since I read your post yesterday. I can add nothing to the advice given or eloquence expressed in previous responses, only add my voice to the chorus so you can see, hear and feel that you are not and will never be alone.
Tina
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Teri, I certainly didn't hear any rattling on from you, so no need to apologize! I am glad that my feedback and support are helpful, and I imagine that the support you have received from others has been truly helpful as well. Don't forget to reach out for support whenever you need it. And remember, allowing others to help is a way of giving to them as well. (I have been challenged to learn this lesson--I seem to have to learn it over and over for some crazy reason--because I tend to be overly self-reliant, but I do know that it has expanded others' lives when they have reached out to me with compassion and caring.) There are many of us here (including you) who appreciate the opportunity to give--to make a difference in someone'e life. That's one of the main reasons we keep showing up here, isn't it? Take good care and know that many lovely people are holding you in their thoughts.
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I don't have any advice that the other wonderful ladies haven't chimed in with already, I just wanted to say that I'm thinking about you and wish I could give you a big hug. Since I can't, consider this a virtual hug and give a snuggle to your Golden Retriever. ((hug))
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I certainly hope I didn't offend anyone by singling out Brenda previously. I truly appreciate ALL of you and ALL of your support. Don't ever think I don't. Hell, I wish we could all meet somewhere and do a big group hug! Just no one better make me spill my drink!
If they had a Make-A-Wish for grown-ups, that would be my wish. And it would have to be in the Bahamas. Aaahhhhhhh. <Clink> <sip>Well, you can tell I'm a little dreamy. I didn't get my full nap today. So I'll probably have to sign off for the evening. Nitey-nite all...
Teri
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Good night, sweet lady. May you rest well, and we will all be here for you tomorrow. I know what you mean about having adult make a wish, and I second the idea for group meeting in the Bahamas!
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Bahamas, did you say? Yes, please!
Dawn. Xx0 -
Capriness, I just read this blog post from someone who has just moved to hospice. She makes it sound like such a great service. If you read it it might help you feel better about hospice care.
http://www.livinglegendary.org/2013/08/18/moments/0 -
Teri I would love the Bahamas! Never been there......lol. Have a good nights rest we will all be here for you tomorrow.
Love n hugs. Chrissy0 -
I can think of nothing to add to what has already been written. I can send you lots of cyber (((((hugs))))) and prayers your way.
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Capri, I'm so sorry to hear all the changes you are having to make at this time. You are in my thoughts and prayers.
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