A place to talk death and dying issues
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blondie. - big hugs. Got tears streaming down my face for you and Rose. Wish I could come over and just listen to you. You need someone to do that. Just sit and listen : no suggestions or fixs allowed. I tried calling you but got no answer. Only let it ring 3 times in case you were asleep. Call me if you wanna talk. I always put phone on silent when resting so if I miss your call just leave a message and I'll call you back. You are an important , valuable member of our sisterhood here at bco. We love ya and sr always here to listen.
Rose. dear sweet rose. I don't really know what to say. You have suffered long enough trying everything to make it thru Christmas and you made it !!! As hard as it was i agree it will be easier in the future and now for your family ( esp dd's) not to associate Christmas with moms death. Isn't oregan a right to die or death with dignity state ? Does your Dr participate ? Not suggesting anything, just asking since you mentioned about being put in hospice and being allowed to slip away. I understand your desire to iron dd2 clothes but now is time for you to rest. Maybe this time was planned just so you and dd2 can have some quiet time alone since dh tookoter girls on a trip ( sorry try didn't get to see it after that much effort). Good to know that he is going to e able to do what is needed for the girls after you are gone. I know I often think about whether dh is going to be able to handle everything that needs to be done especially with the kids. However he continues to amaze me with everything that he can do. In my heart I know he can handle it. going back to the ironing , I know you just need to feel normal again and feel like you are still needed but you already KNOW that you are needed right? So just relax best you can. I love you analogy of a refugee in cancerland. It is so right on. Big hugs from Arkansas.
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Well DD1 did great on her surgery. She is a trooper that one! Daddy went with her so she had plenty of support. We went in to see oncologist NP (who I like) cause oncologist is on vacation. They fit me in as I had no appointment and there wasn't any. I really did not want to go to the ER again. I asked for IV support and she said no. She also said no to any IV nutritional support since it "won't change the out come." The surgeon said that doubtful patient will be able to resume meals unless chemo worked. Wish she told me that. Surgeon is however spot on. After all the driving and moving in the car I violently puked all the gatorade I drank up. So I am on my own with oral meds and an un oral gut. How perfect is this? This is why Death with Dignity meds should be legal country wide and covered by insurance Catholic or not.
So NP wants me in hospice. What will hospice do? No IV meds, no IV support, no in patient facilities are covered, no access to oncologist, or my PCP, no DWD meds as I have Providence Insurance and they are Catholic. So there will be basically no relief from this situation. Oral disolving zofran I have. Pain patch I have. If it gets bad they can take me to the ER to die in the hospital. Hospice provides me just about nothing I need or want. If they could give me IV reglan and IV nausea meds, suck out the fluid so it stops burning my throat and mouth on these puke fests then maybe there would be a carrot in signing up, but the answer is no to all of the above. They might even restrict pleurx bottles which they hinted at when I spoke to them in August - F that.
We stopped off to see college DD2 at her work. Bless her heart she looks so young and yet "old" in uniform. She needed vacuum cleaner bags which we brought. She said what DH said.."but the chemo was only 2 weeks ago and hasn't had time to work. How can they give up so easily so soon? Can't they give you something until it works? Can't you take one more dose before deciding?" I told her they said no to everything. Then we hugged and she was silent and a customer came in. My heart broke. DD3 is very tearful, being just 14. So what the hell. Not like my life will be one shred different if I stay right where I am or go to hospice. So I will stay put, if I am alive on the 13th of January I will get dose 2. I will have my head in a bucket puking, whether I am in hospice or not.
My tumor markers dropped from 729 to 709 maybe Herceptin was working.. who knows. The ever wonderful events of life in cancerland. I wonder with the sheer number of colorectal cancers and obstructions with that population how many times does this get played out there? Cancer sucks.
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Thank u patti i know u r there didnt know u called
Rosie i. Cant imagine what u r. Going through, u r such an amazing, brave woman, i wish we ljved closer where we could take care of each other.....u need to start screaming at people they will listen then.....big. hugs
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hi Blondie!
Rose do you have a PCP or OB/GYN or vet that would prescribe suppositories or something besides oral meds? There's got to be a way you can be comfortable. Is palliative care available?
I'm so sorry. You get bad news/confirmation and have to break it to your family and still put your head in s bucket.
I can't imagine how frustrated you are. I know we weren't promised life was fair but this really sucks. Got any pull with someone political? Can you get the meds in Canada? Sneak suppositories over the border?
And now I'm bombarding you with questions. What can we do for you?
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I needed some peaceful pics to look at. My heart aches for you Rosie. Went to a funeral today of a good friend. Diagnosed with cancer on the 21st died on Christmas Eve. Only 4 days. Still can't wrap my mind around that. 4 day
Hope those pics give everyone some relief. If only for a moment
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I love the pictures Susan. Wouldn't that be a grand place to stay!
I just had a popsicle and it was wonderful. I am resigned to the road blocks life has set before me. I suppose I can sell some stock in my retirement and fork over the 3K for DWD meds but it would pay for an entire quarter at college. I am not even sure how to access it with my oncologist being through a Catholic agency. Hard to justify spending the money- I am by nature cheap/ frugal. I mean 3K would buy lots of vaccinations in the 3rd world. I have no personal issue with suicide under these circumstances, except it's messy, causes issues for whoever finds you and might mess up life insurance. I need to go to social security tomorrow and get it squared away for when I die. I want DD3 to get mine so DH can get someone in to stay with her during summers alone when he works.
Zills.. no oral med or suppository will stop the back up of fluid in my gut. It gets trapped and starts backing up and I vomit. This is all mechanical. No med will stop it. Something is open cause I still pass gas.. weird TMI sorry.
M360 I am thinking of you and wishing you well. Hugs fellow sisters on the path. (((((BIG HUGS))))
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Rosevalley- I'm not stage IV (although I may be if I have a lung met) but read this thread. Just have to say you are extremely inspirational, a unique soul. Even during your darkest days you provide loving advice to others and are so very caring. I hope I can be anything near like you especially if I find myself going down this road. So sorry you are going through this. I wish that you get things squared and much peace. I don't know you, never written to you, but felt like reaching out just to say what a wonderful inspirational person you are. Many gentle hugs to you and I hope everything goes the best way possible for you. xo
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rose. - dang and double dang. No good news from Dr or hospice. Must been another very hard day for you. Also for dh and dd3. Can't even imagine that conversation with her. Sorry doesn't begin to explain how I feel but can't find the right words. 3k for dwd meds suck. Cancer and other life ending diseases are so very expensive. Not many people at the end of their road will have this money. Even if I did I would feel bad to spend it on myself. Thinking many things that money could be spent for. Glad you are getting ss squyared away so dh doesn't have to deal with it. Hugs
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Patty my 14 year old has burst into tears 3 times and then composed herself. We signed and hugged goodnight and she went to bed. A little later we hear howls and sobbing crying.. deaf kids have no idea how loud they are. Dad had to go in and calm her down she just lost it. She knows but it's finally real and scary. This will be her 3rd Mom she has lost in 14 years. Left in China, her Chinese foster mom and now me after 10 years. Amazing she gave her heart away at all. It takes strength to love. I hope she will find her way to love again.
I hope all that read and post their personal journeys know they provide inspiration, hope and courage to those standing behind in the wings. we are there for each other. I have learned so much from others posts, heartfelt sharing and struggles. I post because I see and feel your struggles and we do this together and maybe alleviate the loneliness of a hard road. love to all tonight.
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Rose, you have some tough choices to consider. I wonder whether you have more than one hospice program in your area. Sometimes people assume that all hospice programs are alike, but they are sometimes different in critical ways. Although hospice programs tend to follow the Medicare model of care and guidelines, some may have extra expertise in some areas and/or have more highly qualified team members. They also may vary a bit according to their profit/nonprofit status, which also may affect what they are willing to cover. You often mention your insurance company, which I assume is your primary carrier, and I wonder if they are making the decisions about which hospice services you may receive. Do you have an insurance case manager who could assist you with getting everything clarified about hospice services to be covered?
Hospice programs are built around the concept of comfort care, and as such they will not cover interventions that are life prolonging, in essence those measures that prolong the dying process by the time end stage disease has progressed significantly. The focus becomes quality of life and not quantity, although there is more and more research that shows hospice often prolongs quantity and quality when the focus becomes comfort. Because of the comfort care approach hospice providers focus on measures that are the least invasive and do not harm. IVs are considered invasive, so meds tend to be provided orally, rectally, or via patches and compounded creams, but if those routes aren't successful, then hospice will provide alternatives that use IV set-ups. However, IV fluids are not typically provided because a person's body becomes easily overburdened by fluids at end of life, causing great distress. Generally speaking, PleurX kits are covered, because of their place in comfort care, although individual hospice programs may differ on how they manage this. Hospice providers also have ways to address excess secretions by oral suctioning. There are many comfort measures at their disposal.
Another consideration is whether you plan to continue chemo, which is typically not covered by insurance if hospice care is chosen. Although Medicare is experimenting with allowing both coverage of aggressive care and coverage of hospice care at the same time, those programs are few. Do you think that your MO will allow you to have chemo again if you remain as sick as you are or if you are sicker by the next time? Is that something you discussed with the NP?
When you say that in-patient facilities are not covered, I am wondering if you mean residential hospice facilities. Hospice programs rely on Medicare funds, and Medicare requires that a person have access to in-patient care whenever symptom management becomes unworkable in the home or whenever a caregiver becomes overburdened or ill or has another situation that causes him or her not to be available for caregiving. In the first case, the person returns home when symptoms are under control, in the second case the person receives in-patient care for up to five days then returns home. A residential hospice program, where someone may live until death, has much of its team's services covered (like 80% or even more) by insurance but typically does not have its "room and board" services covered. Often when people say that in-patient care is not covered, they mean that a residential program's room and board charges are not covered. Some programs offer sliding scale fees for room and board or monthly payment plans or even significant discounts whenever repayment would be excessively burdensome to the family, but not all do.
Hospice programs are required to have medical directors, who are required to supervise a person's hospice care. Medical directors typically have expertise in palliative care, while many MO's do not. Many medical directors will continue to work closely with a person's MO or other referring provider. Some MDs out in the field do not wish to be involved in a person's care once she is enrolled in hospice. Also, if the hospice team cannot meet a particular need, then a visit with another provider outside hospice would be arranged. For example, a person who fell and broke her wrist would be allowed to receive orthopedic care. Hospice also tends not to rely on tests in order to assess disease progression, relying on clinical signs instead. This is a big shift for many people, who are accustomed to receiving all manner of tests to "know what's going on." I should mention, though, that if assessment tests are critical to the provision of comfort care, they usually are covered.
One of the biggest concerns that I have about you being at home without hospice care is the lack of team support for both you and your family as you continue to deal with current symptoms, if these symptoms increase, and as disease progresses. Who will be your caregiver when you are no longer able to manage your care? Is your husband capable of being and willing to be your primary caregiver? Are there others available to assist him if he is willing and able, or to manage your care needs if he is not? Do you have home health in place and plan to rely on them rather than on hospice care? Home health does not offer the range of services that hospice offers given the hospice focus on holistic care provided by a team (medical director, nursing, personal care assistants, social worker, chaplain, and others). Hospice also provides bereavement services for at least 13 months (longer if needed) to your family members at no charge. If you remain at home without home health or hospice, do you plan to go to the hospital when your status changes, your needs become even more critical, and/or your family is in great distress? Do you prefer to spend the end of your life in the hospital if at all possible? Or do you prefer to remain at home?
I know that the above is a great deal of information to consider, and you may not feel like considering it. Of course, that's your choice. I also want to give this information because there are many people reading this topic, and it is important for people to know the basics about hospice so that they will ask thoughtful questions and make the best choices for themselves, too. I hope you know that I have deep compassion for your situation and care for you, as do others here. I will keep you as well as your precious family in my thoughts and hope for clarity, peace, and comfort.
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brenda. Thanks for posting the info on hospice. Answered many of my questions
Rose - wow that's a lot for your 14 year old to have to deal with. Breaks my heart toear you talk about her sobbing. Again hats off to your dh for dealing with her tonight. Your dh sounds like an awesome man. You should be proud.
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Dear new bc.org friends,
I'm a new participant here and joined especially to meet others with ascites, doing paracentesis procedures (and indwelling drains) and to participate in this Dying and Death topic, since it's up front and center for me, because I went on hospice 8 weeks ago today.
You've been wonderfully welcoming and I'm grateful to be included. Thank you!
My name, longtermsurvivor, isn't my hope or wishful thinking, but my lived reality. I've been living with advanced breast cancer for 25 years. While I can't give you my survival secrets, I can share a bit of what I've learned - how to maximize "ease of well being", engage healing allies, substances and practices, and what I've learned about caring along the way.
Just like I'm an outlier in cancer land, I am too in hospice, as most cancer patients are on hospice for less than 2 weeks and don't have the opportunities to benefit the way I have. Because I knew I was hospice bound, 4.5 years ago I began palliative care with a doctor who has since become my hospice doctor. Also, I was allowed to keep both my oncologist of 23 years and my osteopath. I don't know how hospice worded the request, but I'm allowed to remain on Femara which controls my lung and pleural mets, though not the liver mets and ascites.
During my time on hospice, my team has encouraged me to captain my own ship and I've come to rely on them as trusted co-pilots in touch with me and the larger picture. It's very important to me that my team understand, respect and support my personal goal to die as I've lived - as consciously and lovingly as possible. Or, as I said earlier, with ease of well-being. I'm all about relatedness and energy.
My work, as my energy winds down is to transition from self-care to allowing others to care for me. To trust integrating the best folks as allies into my care. I am transitioning from many people who care about me (hundreds) TO people who've been caring for me (dozens) down TO those who can and will take care of me in a way that feels good for me, offering what I need, not what they'd need in a similar situation.
infantilization of the dying freaks me out!
I believe this dying is the final work of my life, not giving up or dropping out or being anesthetized.
And, I've studied with many loved ones who've died - observing from their experiences what I do and don't want for myself.
There are many ways to die.
Another woman with breast cancer and ascites who is approaching death is the author and poet Eva Saulitis who's written extensively about it at Caringbridge, Alaskan in Cancerland and in published articles. She ended her most recent Caringbridge entry, "Death is perfect."
It's always wonderful to meet another person with a similar experience, though her circumstances are rich with loved ones surrounding her and I, who live alone and have practiced self-care for a lifetime, am challenged to trust the loving care of my intimate friends. I can't take care of it all by myself now. I'm increasingly other-reliant. It's a difficult transition to make, but hospice is helping me clarify my needs and supporting me in these final days.
I am so grateful for hospice. It's working well for me.
Rose, I've no advice to offer, just love and this Peggy Seeger song,
Love Call Me Home
https://www.youtube.com/watch?v=p_FPHKzfUak
My intention is to add another story to this topic for those who are reading now and others who will come to the archives in the future.
May each person find ease of well being, healing allies and necessary care to live and die as best for her/him.
love always, Stephanie
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ok Rose. I get it. Sorry it took so long. I'll quit tilting at windmills and imaging how to bootleg suppositories.
I completely get the money thing. Good luck at SS.
I have the same concerns about my kids and my death since they were adopted too. I just tell myself that their lives are better for whatever time we had. My life is better for having them.
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Rosevalley, thank you for sharing such intimate parts of your life with us. You will certainly help others of us with those difficult choices. I know you are aware of assisted suicide and understand your concerns about the money. You must be an incredible mother and wife. I can feel that in your words. But this is a time when you must think of yourself. Have you talked with the people at Compassion and Choices? They may be very helpful working with you and your family in making decisions or finding alternative hospice choices. Hope you get some comfortable rest today.
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Stephanie, I am very intensely listening to you. Your decision to join here and your posts are so very much appreciated! I noticed the extremely mindfulness and resourcefulness of your approach to your illness. I admire. I also admire your great successes! It's still saddening that you are now dealing with the approaching of death, though. However, what an eye/mind opening concept that "death is perfect"!
Rosevalley, wish you finding a way to achieve some relevant "ease of well-being". For now, is it possible to make all the oral meds you need cream and apply them on your skin?
Zills, the thought that your adopted children will be better off anyway because of having you and your life has been richer because of having them is truly insightful. Great conclusion!
Brenda, thanks for the thorough information of hospice.
Wish all a good day!
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Dearest Rose, I don't want to add to your angst, but it seems that your onco office is not interested in relieving your pain and nausea. They could have sent you up to chemo, had them access and given you IV nausea Meds. Taken 10 minutes. Maybe thrown in some fluids. It seems they want to "get you in line" to their Plan. It is not right. At least you would have had relief for 8-10 hours. They have obviously not suffered as you are. It really pisses me off.
And do consider a different hospice. As Brendatrue noted, there are different ones around, and each will have different philosophy. Most will strive to get you pain and nausea free asap.
Love and hope for relief
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Rose....One of my colleagues developed ascites last spring while still on treatment and taking chemo for pancreatic cancer....He had recently retired but was still covered by our college medical plan and not covered by medicare...He was also receiving palliative care (through our oncology center) and he went to the hospital at least three times for drainage procedures and our insurance paid in total for this...We were both surprised to find out that our plan paid in total for palliative care but limited home health/hospice care to a total of $7500 (my understanding is that Medicare has no such limits)...But, he was allowed to go "on" hospice care and then go "off" hospice and back "on" palliative care for the drainage issue from the ascites...He did use this option for a few months...Wishing you comfort and peace in this difficult time...
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Xavo, I meant to thank you earlier about giving the update regarding DuneS when I was wondering about her at the end of life. Stephanie, I am grateful that you have added your voice to this thread, too. Thanks for sharing your story and outlook. Patty, Beatmon, Sarah, Zills, your words add much to our D&D thread as well.
One of the things I like about this thread is that we bring our unique voices together to create a conversation that is so much more enriched, wise, comforting, and helpful than it would be otherwise. One of the thoughts that occurred to me after I posted last night is how we might try to prepare ourselves as much as we can prior to the very last stage of life on this earth, but that when we are actually in the midst of that last stage (however long it may be) we may face feelings and thoughts and fears and concerns that we had not previously considered. We may prepare by being thoughtful, learning all we can, having meaning conversations with significant others and medical providers, and making what we consider the best plan (and maybe even a back-up!), then find ourselves unsettled and in upheaval as we deal with the reality of the situation. It's at those times we need to remind ourselves of our values, our belief systems, all the most adaptive coping skills we have developed over a lifetime, and our support systems, then reconnect with and use them.
I, for one, know that I have a tendency to intellectualize and cope by analyzing, planning, and implementing (EGAD!), that I am a recovering control freak/perfectionist, and that I am fiercely self-reliant, so I remind myself that I must integrate all that thinking and planning with the full awareness of my emotions and values, quit thinking that there is one right way to do things, and let go and allow others to help. This is a life lesson that I learn over and over in many different ways, and I suspect it will be that way until I die. My life experiences have involved breast cancer for over 20 years now, and if I had not learned about mindfulness/mindful living all those years ago, I would not have coped nearly as well. When I had chemo with the initial diagnosis all those years ago, I was just terrified. I read and listened to tapes that urged me to consider that I could heal into wholeness regardless of the state of disease I experienced and the losses that the disease brought about in my life. The strangest concept for me at the time was that one can "heal into death"--that healing/wholeness can and does include the dying process and death itself. How bizarre, I thought. But over the years I have come to see that this type of thinking resonates with my values, life perspective, and way of living in relationship with myself and others. I maintain not just hope but a commitment to being true to myself at the end of my life. And it brings much needed peace as I struggle with so many health challenges.
Thinking of you all, in lovingkindness, always....
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PS Stephanie's comment about getting Femara while in hospice care reminded me to note that hospice programs may be able to cover radiation, chemotherapy, hormonal therapy, etc., if there would likely be palliative benefit. Typically speaking, if a person's use of various modalities is not guided by a palliative perspective, those modalities are not covered. Perhaps one day we will see more and more hospice programs being able to care for people still involved in "aggressive treatment." I've read that Medicare is interested in determining whether there will be cost savings by providing both at the same time, given that people who are involved in palliative care programs tend to choose hospice earlier than those who do not. One of the pieces of feedback that many hospice organizations receive over and over from both clients and their family members is that they wished they had chosen hospice care earlier.
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I just can't stand to think of our beloved ladies suffering when there are so many medications available to ease their pain and nausea.
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Hi Rosevalley,
I've been posting on the financial and career implications of cancer topic too:
https://community.breastcancer.org/forum/8/topics/837348?page=2#idx_56
I think the same thing applies here, there is tremendous regional difference in how programs are administered, including hospice programs.
My hospice nurse came today and I asked what they do about several concerns you mentioned. They are one of four hospices in my region and there are variations between them.
Yes, IV meds.
No IV fluids at end-of-life, but possibly for sx relief earlier.
No inpatient facilities in the county, but their patients do go off and on hospice to be hospitalized to control sx or deal with non-related problems. The hospitals have palliative care units and special rooms for the dying.
Yes, PCP, oncologist, other docs for the stuff that isn't going to kill you, just make you miserable - podiatrist, ENT, allergist, dermatologist, etc.
Yes, they pay for comfort care meds and medical supplies including my drainage supplies. They even deliver or have them delivered to me - saving time, money and exposure to germs at pharmacies. Yay!
No DWD meds now, but they'll have to deal with this once California's new law comes into effect.
Some of the hospices allow transfusions, blood tests and other potential palliative, though not curative treatments.
So, in hospice and cancer as in real estate, it's location, location, location and seeking what you need.
Continued good wishes that both your care and your health improve, Rosevalley.
Your loved ones depend on you for care and your self-care is a way of caring for them.
warm wishes, Stephanie
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Beatmon.. I think the zofran and reglan do help some, but when the secretions the body makes all the time (saliva, spit etc..) buildup and back up there is no place for it to go but back up. Thus the vomiting and why I stick with mostly clear liquids since they tend to stay down. I went with DD3 and DH to get flooring, just one trip to home depot.. wore me plum out. Got the flooring DD2 wanted. So at least the trip was worth it and such a sunny gorgeous day. When we stopped at Walgreen there was a crow convention like 50 of them.. a "murder of crows." They were so animated and funny to watch. I admire crows very smart and so family oriented.. they even play.
Longtermsurv- boy there is a difference which state you are in. I was told zip for the things that matter to me- No IV meds, no fluids, no suction no DWD meds even though they are legal here, medicaid/medicare allow 5 hospice days a month and my insurance allows 5 a year and none at in patient hospice, all are in a nasty nursing home. So I didn't sign up. The fentyl patch appears to be helping but not hugely. My PCP is great. It took 3 days worth of calls but we got the pleurx supplier and their insistence that they had no order fixed! Yay. Onc office said they faxed orders 3 times and they said never got them.. grrr.. You need to take off from work to spend hours on the phone.
I wanted to ask you who will care for you when you can't do it for yourself. Hospice doesn't provide that kind of care do you have a plan?
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Hospice nurse to me is useless, i have a home health care aide who is my son, 2 hours a day. Hospice comss sw twice a month,nurse twice a week, there is an ex priest that comes but he is talking to george, i choose not to talk to him. I have medicare n medicaid n have no life ins, so going through an agency called science car, an i will donate my body they will cremate n send me back.
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HI Rose,
Thanks for asking about differences between hospices! I'm uncertain how much they vary by state and how much by region and how much by agency. Even in the small non-profit that I've enrolled in, I was told different things by three different authorities, but because I know the hospice doctor who's the ultimate authority, I kept asking until I got the answers I wanted, got them written down and now they are "doctor's orders".
Rose, you and I are so similar - not only location of our mets and dealing with drains, but our ability to advocate for ourselves, make the best possible choices when none are good and to stay the course - bending the world to our will when necessary.
I'm neither partner nor parent, so I have a circle of care based on this model:
And we also use this online resource:
It's comprised of old friends and new, acquaintances too - though they've become friends during the past 3.5 years.
One member is designated as my hospice liaison/primary care provider, though she's not here much more than anyone else. Eventually, my calendar will fill with around the clock care, but I'm still holding out for life and death on my own terms. The hospice nurse is coming next week to orient the close caregivers and respond to their questions and concerns.
Rose, some people do really well with this sort of thing, others don't. As I mentioned, relying on others for care when I've been in charge of self-care for years is my current challenge – trust.
You've mentioned that your husband isn't dealing well with talking with you about your situation, so even though he is there in sickness and health, you might want a close friend or family member to be your designated hospice liaison. You might want to consider a team to take the burden off of too few carers, allowing everyone more "ease of well-being". It can be more about love than money...as we both have learned in life.
Rose, thank you for your warm personal welcome when I first joined this group. It means a lot to me that we're in very similar situations, even though we live in different states and states of being.
Holding you in loving, healing light!
warm healing wishes, Stephanie
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Bon and others thank you so much for your kind support. Dying of malignant ascites and bowel obstruction is miserable. You see the body's response to a gut blockage is to "wash out the blockage with increased secretions." Well when you have a mechanical obstruction like a tumor and increased pressure from ascites then this is a horrible feedback loop. It is just leaving me speechless that with over 40% of ovarian cancer cases having this complication and colon cancer high on the list, that palliation doesn't include any IV relief. I mean I welcome vomiting since it's theonly way to relieve the pressure.. hurts and burns, and 20 hours of the day is spent hoping for it. I just think the management of this process totally sucks. In my opinion my oncology team gets an "F-minus." It's a comfort zero and until your body starts to shut down kidney's fail and liver craps out then you are just in this holding pattern of misery. There are drugs available to lessen secretions given before surgery.. but I haven't a clue if they are given under these circumstances. I meet with my PCP at noon and it's 3am... I am up because of nausea and back up. I will ask about DWD meds and how to obtain. I am cheap but maybe this is a retirement gift from me to me. No messy puking miserable death and I have suffered enough already. My DH willbe totally against. So you might not hear back from me.
I do think very highly of this site and the relief and sharing it provides the sufferers of breast cancer. I know of no other spot where you can question others, seek information and relieve frustration and find support - from anywhere in the world! Really amazing and very helpful in helping patients seek out care and treatment. Whoever thought of it my hats off to you and heartfelt thanks. To each of you fortitude, compassion and heaps of loving-kindness.
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Rose we hear your misery and pain. All I can say, is we are behind 100%. I hope your PCP is compassionate and will help you get the relief you so desperately deserve.
I'm sorry it took so long for us to truly grasp your situation. You are a pioneer and will live long in our memories.
I do hope that you let us know so we can send you on your way in a shower of love. But that's me being selfish. You need to concentrate on yourself and your family.
Peace.
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ahhh Rosie, I do hope someone reaches out to you for relief. Just a thought, are there privatized nurses that can help with its? I must say when I go down this road, a friend of ours is an internist, SIL in residency soon, and a good friend a head nurse. I think the will do for me whatever it takes. I hope and pray you can get someone in your pocket too. It not like you r asking for a lot. We all need to be as comfy as possible. Can't believe you went to the store!, you do have the fight in you girlfriend. Good job.
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Rosevalley, I felt compelled to write and to let you know how much I admire you and how you are handling yourself in what is arguably one of the worst cases of ascites I have ever heard of. My MIL died of colon cancer and had severe ascites and she was so miserable. It was so hard to see her constantly in pain and with such severe N/V. I felt so very helpless. Yet you are still so helpful and reassuring to others who are hurting. My wish is that the world wake up and realize the urgency of finding a cure for the many forms of cancer stealing wonderful people from this world.
I just want you to know that I will keep you in my thoughts that things get better for you and that your final days are as pain free as possible. As a mother, I know how hard it must be to leave your babies. You are an amazing woman Rosevalley. Smart, caring and you don't play games - you tell it like it is. Life is too damn short to blow smoke up someone's ass if you ask me. I admire your style and I know that whatever decision you make concerning your exit from this earth, you will do it your way, keeping your family's comfort foremost in your decision(s). Please know it is absolutely all right to also think of yourself in this. Make this part of your life all about you. With deep respect and compassion.
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