A place to talk death and dying issues
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Rosevalley, I appreciate your update on CalicoCat. I will be saying special prayers for her, my hope is that she is able to be resting as comfortably as possible.
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Rosevalley thanks for the update on Calico, I wish her peace.
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Rosevalley,
I am a newcomer (progressed to Stave IV in Jan 2015) and your posts have been so helpful to me (I am now on Aromasin/Affintor and have read the old threads) along with Romansma (Hope's) posts! Thank you for all your contributions to this site. My thoughts and prayers are with Calico and you and all of us dealing with this disease.
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Rosevalley, thanks for letting us know about Calicocat. She is in my mind. And you take care of yourself too
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First, a little business matter. I mentioned in a previous post a book that was created by the American Bar Association and AARP: Checklist for My Family: A Guide to My History, Financial Plans, and Final Wishes. I bought the book from Amazon and learned that there is a website where anyone can download the checklists that are included in the book: http://www.americanbar.org/publications1/books/aarpforms.html This is a great resource for those who are trying to tackle those "loose ends."
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I continue to hope that all the folks who hang out on this thread know that I keep you in my thoughts and hold hope each and every day that you find the peace, comfort, meaning, and fulfillment that you desire at whatever stage of life you find yourself. Calico, Rosevalley, Hortense, Blondie, Skylotus, I think of you with deep appreciation for all you have shared here from your hearts and hard earned wisdom. Rosevalley, you have been so kind to share a brief update about Calico, and I hope she continues to feel our loving presence in her life even though she is no longer able to share her experiences with us here. To all my other friends who continue to post here, I am grateful whenever I read any of your posts.
suersis, you and I both, as well as many women who visit this topic, find it meaningful to be open about our thoughts, beliefs, concerns, feelings, plans, and what-have-you about death and dying. And like many, we share openly our intentions and focus on quality of life "over" quantity of life. It often seems like a very precarious balancing act--and certainly one that each of us has to learn how to manage best for ourselves given our unique values, beliefs and interests. I know that doctors as a rule tend not to be very good at estimating longevity, so I decided a while back that I would just make a list of end of life needs and plans then start plodding at my own pace to get some of those needs and plans resolved. I'm still working on it, and I have decided that I will just do the best I can and not worry if I leave unfinished business. I don't want the business of death and dying to detract from my ability to live in the here and now. Again, an interesting balancing act. suersis, I hope Femara will give you a good run and that you will be able to live as fully as possible while you come to terms with your mortality.
In the personal update department, I have been faced with some difficulties while continuing to live with cardiac disease (three diagnoses at last count), and after trying three different meds in the contest to find the right third heart med to take, the fourth one seems at last to be tolerable. Now I will just try to wait patiently in order to see if it will actually be helpful. Because of a progressive cerebrovascular illness kicked into high gear from my last chemo and hormonal therapies and a toxic combination of that illness+hormonal therapy (resulting in TIA's), I am no longer a candidate for current hormonal therapies. Interestingly, my status post-mets diagnosis is still NED. My MO states we will have to be cautious and careful "if" I need to have chemo in the future, but he acknowledges I might rightfully choose no more chemo because of my ongoing risk for stroke and heart complications. I try to live in the present as much as possible, and I am grateful for all that is still working well.
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Today is a " Die In" in DC...to remember our sisters and brothers ...177 who died today of Metastatic cancer.
newbie20111 ( not a newbie anymore) . Remembering two friends with METS who died this past month.
By the way, have you seen the Metavivor website.? Putting names to the numbers. 100 per cents of their funds go to fund research on METS ( most recently $750k raised to give to preselected researchers.)
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Big hugs, thanks for the update on calico
Thank u and know i think about u often
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Thank you for the update on our Calico, Rose. I know it was probably what we expected, but hoped it wasn't so. My thoughts are always on each of you..love & peace.
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I will miss Calico's presence here and her observations and humor, but passing out of cancerland into peace is a blessing. I hope her DH posts. Big hugs to you all on this path we must walk.
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I am following this thread. Prayers and comfort for all dealing with end of life. This thread is helpful. Thank you.
I sent a box of family stuffand my stuff to my nieces. Slowly moving things forward. My niece asked " what do you mean by moving stuff forward". Explained to her my liver status and explained i wanted to "move stuff forward " while I was still alive. Really made me feel good.
I'm still going and fighting for my life. Just started gemzar and praying this new chemo will offer me reduction of mets. I want to make it to 65. (I'm 63). That would be five years. After that gravy. 👍 The goal setting keeps me on track.
Only my love and care for all.
Diana
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Hey rosie
Diana i myself set up goals, when i got the recurrence in 20 09 it wa til the twins graduated 2012, then 2013 when my granddaughter graduated, now it is February.
This sucks
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Brenda, I'm going to repost your link in Just Diagnosed- Be prepared thread. Great link. I'm a firm believer in be prepared. Thanks.
https://community.breastcancer.org/forum/5/topic/748296?page=10#post_452539
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Phenominal and comprehensive list. I had already stsrted my own system of using spiral notebooks and bringing copies of tests, etc. to appointments, but her list is far better. Thank you for reposting it.
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I haven't checked in here in a while as I had started Folfirinox chemo for my Pancreatic Cancer and one round of the darn stuff just about killed me. I had to get rehydrated twice at different hospital's ERs and was hospitalized twice for its side effects - suffice to say I lost about 12 lbs in two weeks. I couldn't eat or even sip a drink for about three weeks. Couldn't even take my pills or they would come back up volcanically within 30 seconds. Chemo can be nasty stuff.
I have decided not to do another round of it, or anything else, as nothing would be curative. Pancreatic Cancer is so lethal. On my doctor's suggestion, I have entered Hospice care. I would rather have a shorter, higher quality life than a longer one sick and miserable from medical treatments. That, to me, is not living.
I'm home again and feeling much better. I can eat and drink again, my pain is being managed by Fentenyl patches and I am enjoying my life once more. Hospice nurses check in on me by phone, and once a week in person. Apparently, I am one of the healthier dying people they are caring for right now.
I do not know how this disease progresses, but Memorial Sloan Kettering told me two months ago that if I did nothing I had a median life span of 12 months, and if I took Folfirinox I would have a span of 11 months - so, does that mean since I had some Folfirinox that I lose a week or so? Who knows. So far no doctor or nurse can tell me, or wants to tell me, how long I might have. They just say that everyone is different. I did find out that pancreatic cancer is one of the worst to get, that it is one of the most painful ones and that I may get all sorts of complications due to blockages in my gut. At least I know about that now.
As it is, it is I feel alright, though I do get tired and sometimes have to nap twice a day. I am happy, and that is what matters to me.
I have been occupied by getting my paperwork in order with my husband. Who knew that there was so much to do and think about? Just consider all the automaticly renewing magazine subscriptions and household bills, - who's name are they in and are they on my credit card or my DH's? Things like EZ pass badges have to be switched to his name so that after I die he can keep using the sensors and not get stopped at some random bridge. There is a lot to do to wind up a life. It's keeping me busy
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Hortense, well, you certainly have been through the (proverbial) wringer! It sounds like you have reached a place of peace and acceptance with your decision to enter hospice care, and I hope you find that you are able to experience a good or good enough quality of life for some time to come. I recall two people who had pancreatic cancer: one who entered hospice care early and had good pain control throughout but difficulty with nausea, although that was ultimately controlled well, and one who entered hospice care with just a few weeks to live and whose symptoms were much harder to manage. Who knows if the difference was because the second person's body was so ravaged by treatment and the hospice team had so little time to get to know him in order to find out what would work best? Across our nation, MDs still "wait" to refer to hospice at the very end of life rather than refer earlier. I've posted before on the research that suggests many people with cancer have a better quality of life and greater longevity if they leave behind aggressive cancer treatment and focus on hospice and comfort care sooner. My hope is that you will be one of those people.
Rosevalley, Blondie, Calico, Skylotus, holding you all with hope that today brings you comfort, peace, more than a few moments of joy and kindness. I continue to honor your spirit!
This thread exists for all regardless of stage of life, and I continue to be relieved that we have a thread that allows anyone who is interested to explore meaningful end of life issues.
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hortense--thank you for updating us. I hope you feel as much love from everyone here, that you gave to capriness and many others. My love to you.
Brendature, calico, rosevalley, blondie, skylotus...always thinking of you. Amazed and thankful for your contribution here. I can only imagine all you have accomplished in your lives, how many you have touched with your grace. Love to all
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Always thinking of you wonderful ladies. I'm touched by your posts, inspired by each and every one of you…
Sending much love…
Rose.
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Hortense- I hear you, feel your thoughts and agree with your conclusion. QOL is the gold standard on which I measure everything medical. I truly think that patients are the only ones who can adequately measure what cancer and treatments do to them in a wholistic way. Only the patient knows how the meds make them feel, the side effects, the effects on day to day life. It takes courage and conviction to turn down a "might be effective" treatment to gain a brief fleeting foot hold on life as it used to be. Having your head in a bucket sucks. These are such hard miserable decisions but all the data shows that hospice patients live longer and are happier then those who do not sign up for hospice. So the stats are on your side that life will get better before you transition on.
I know I am treading water right now. My numbers are just holding steady, no improvement. I take 2 drugs (one since May and the other added 4 weeks ago) which are doing something but not a whole lot. Still the SE are doable and adding misery to what I already have doesn't make sense to me. Right now I am super peeved that they can't drain fluid off my gut because I ran out of the vacuum containers. I only have one. I called for a replacement and thought they would have come by now and certainly today. They said they would. Well nothing came- zip. So my home health nurse called and the supply company hadn't even sent them! They didn't call me either.. ACKKK! So she hunted the approvals and got them to send it Fedx tomorrow. When I ordered replacements on Tuesday and they said they would send 2 cases and told me I was authorized for 5. WTH??? Tuesday they got 2,400cc off. Can you imagine how bloated I would be had she not called - 6 days with no relief? Grrrr. I get this wonderful catheter to finally drain the ascites at home and can't get the containers to use the catheter!!! *&%#
On the upside I see radiation oncologist about my left shoulder for a bone mets zap. Hopefully that will go well. Maybe pain relief - dare I hope? I signed up for palliative care and so far I am happy with doing that! If that is an option for any of you take it! Oy the chit we go through in cancerland... over the river and through the woods, through deserts and fields, valleys and mountains.... Be well as you are able ya'll! I learn from and admire you all.
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Thank you ladies. We are all going through the same thing, aren't we? Although, perhaps at different paces. It's nice to be able to come here and talk with others who understand.
Kjones - I remember and think about Capriness. I sometimes check on her horse, Forest, at the rescue center's website. I should probably do it again. I made a donation there in her honor after finding out she had died. I should probably make another one.
I think Brenda's right in that people might have a better quality of life if they enter Hospice long before many think they should. My nurses are lovely and I can talk frankly with them about everything from day to day symptoms to dying, and I do. Yesterday I asked how other people with my type of cancer had done and was told it wasn't easy. I'd rather know.
I hope to go into hospice inpatient care 2-3 weeks before I die as I do not want to die at home. It wouldn't bother me to die here, but I think the images from it would haunt my DH. I have found that he is surprisingly superstitious for a sensible man and I don't want him to be "seeing" or imagining me sick in bed here long after I am gone. I have tried to talk to him about it but he melts into tears, so thus far discussing it with him hasn't been possible.
Meanwhile, I am still trying to tie up odds and ends, and there are so many. I managed to add my husband's credit card to my EZ pass account today so that when I die and my card is cancelled, the account will live on. I wrote EZ pass last week to ask to have the account's name changed from mine to his, but I haven't heard back yet. That will probably take weeks. I also changed another account from my name and card to his. I don't want companies calling him after I die to tell him my card is not good any longer.
Today I hope to clean out some more files in the basement and write a few old friends that I haven't yet told about my illness. So, a busy day.
Best to all.
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Hortense you are lucky to have inpatient hospice. I have no access to inpatient hospice. It's 309 a day and we would be wholly responsible for it. My neighbor even told us a story of a family who was asked to pay a 4,000.00 retainer before they would accept his wife in their inpatient facility. She was placed and died 6 hours later. They had quite a miserable fight getting the inpatient facility to cough up the money since clearly she didn't "use" it. I had hospice come out and soon found out I had way better coverage and more options palliative and otherwise off hospice than on. I was speechless. I wouldn't have gotten the pleurx catheter for example, which has for the last month made my life MUCH better. Insurance rules way too much in my opinion. I also do not want to die at home because of my 14 year old. I still have not figured out what i can do to get around this. You are so lucky to have inpatient hospice and to be able to afford it. We have 5 facilities here and they are all full most of the time.
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hortense. My mom passed of pancreatic cancer in hospice care. Honestly can say her passing was beautiful with one difficult day I'm sure she didn't remember. They kept her very comfortable.
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I am new to all of this just having had my bmx in June. I received no chemo or radiation recommendation. Went on femara and by the 5th week had to get off due to crippling pain. Went for a cat scan because of those back issues. That report started my Fear.
I have 2 8cm masses on my ovaries and have an appointment with surgeon Monday. Had a bone scan Wednesday of this week. I just went by the hospital to get the report so I would have it Monday. The repot states highly suspicious of mets. Area of concern is t2. There was also a mass on my kidney picked upon that ct scan. Was supposed to have an mri of kidney with that bone scan this week but they would not do bc of tissue expanders in place. Those come out 11/4. I am terrified
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Mab60- don't fall apart until you get all the results in. Right now you don't have enough information. My Mom had benign mass on her ovary the size of huge orange. It took pathology to calm our fears that she would leave us. (((Hugs)))) You are in a very scary place right now. I hope you get the answers you need soon.
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Hortense - Good to see you posting and glad to hear that your pain is under control. Hope you're able to spend some time making memories with your DH - leave the cleaning out of the files for later.....sending love, S.
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Rosevalley, Good to hear from you but, oh my, the frustration I feel on your behalf with regard to those catheter containers and the challenges of entering an residential hospice care program when needed. I'm staying hopeful the rad onc will help with the zapping procedure and you will get improved pain control through palliative care. I hope the palliative care program will have an actual team of people and not just one or two members. Our local PC program has one "official" member--an RN who runs herself ragged trying to see people when they are in hospital, and that's it. Seems like so many hospitals want to claim they have a palliative care program but many don't want to build on the team concept much less insure that team members actually are well-trained.
Hortense, your comments about your husband make me think of this Rilke quote: "... [H]ave patience with everything unresolved in your heart and...try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer." Perhaps over the coming months he will adapt to the new circumstances of your life together and the prospect of your death, and he will gradually "live his way into the answer." I have known a number of people who were frightened by the prospect of having a loved one die at home then gradually adjust to the idea and accept it as a mutually meaningful experience to have (this especially applies when hospice care is involved for more than a few days). However, having said that, there are people who just cannot tolerate that option and having a Plan B is helpful.
Mab60, I am wondering if, while you are contemplating the possibility of having metastatic disease, you can allow yourself to slow down and take one day at a time. Sometimes that means taking one hour (or less) at a time. People often start playing "what if" scenarios before they have all the information needed and they often subject themselves to unnecessary suffering. Remember that it is natural to be anxious and fearful but that you probably haven't lived to this point in your life without coping skills. What helps you to cope? Rely on those skills and your support system, including the many wise and warm-hearted people of BCO, to help you get through these days one at a time. Allow yourself to gather information in order to be well-prepared for follow- up appointments, but don't let yourself go crazy with incessant research and worry. They will not help, and they may even do you harm. Also, as many of us have learned, and I am in NO WAY minimizing the seriousness of having metastatic disease, there are treatment options available for metastatic disease. While there is no single person here in this forum who has ever welcomed the news of mets, should you get that news, please know that you have options. And even though I am a big advocate for people planning for end of life, there are times when focusing on end of life matters is not emotionally stabilizing. You might find that a focus on gentle care of your mind, body, heart and spirit is most helpful to you right now.
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Nice post Brenda. I hope Mab60 reads it. It's so easy to lose it when you first get socked with the possibility of mets. It takes time to take everything in, gather info, examine options and listen to treatment options. I remember when my Mom's mass was found on ultrasound we just panicked! I mean with our history- Great aunt with BC who died of ovarian CA, Grandmother died of IBC, Mothers sister has BC.. I have BC. The odds were poor. It turned out the ovarian tumor was benign and here she is years later fine!
The palliative team seems really nice and together. This is a big center in the middle of abig city, lots of patients. I am hopeful for symptom relief. I agreed to try the herceptin since my markers flipped from Her2 neg to Her2 pos. I have yet to read a single case of any chemo helping malignant ascites. I am taking herceptin because it has few side effects and makes my DH and kids happy. My onc says in theory if you control the cancer then ascites will lessen. Just a theory I guess. Plus it's in my lung, liver, every bone, skull omentum and peritoneum. I figure I am just riding the current in my little canoe here...
Hugs Hortense. Did the little foxes and swallows come back to your place? I remembered the wonderful pictures you posted from Capriness' thread. Loved the photos. Your area is so lovely. Lucky to live in such a natural area with wildlife.
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Brenda I read the post and took it to heart. I will try to slow down. I am seeing how fluid the situation can be in the beginning. 2 weeks ago told I had an 8mm lung nodule. Repeat cat with contrast showed nothing in the lung but it picked up the area in the spine they are labeling highly suspicious. Will see the gyn onc surgeon Monday about the pelvic masses -0and will discuss the spine situation on Thursday with oncologist. I really appreciated your reply
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Can anyone tell me why so many doctors and nurses when I was in the hospital a few weeks ago, and also Hospice people, have asked me if I am having "drenching" night sweats? I wasn't until this past week and now I am waking up at 4 am perspiring all over and with damp PJs.
What are the sweats caused by? I plan to ask my Hospice nurse when she calls, but thought I would ask here also. Thanks.
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I am thinking of all you ladies...calico, rosevalley, blondie, skylotus, hortense. I don't post here often, especially after hearing about Calico's progression. But i have been following your posts and updates.I hope everyone is in the comfort of loved ones and loving surroundings.
Hortense. I hope you got the answer to your last question about night sweats. I don't know anything about it, but did not want to see your post unanswered.
Mab60, how are you doing?
Sleep tight,
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