• Need to find hope in a losing battle

    Asked by Hope4Barbie on Tuesday, March 11, 2014

    Need to find hope in a losing battle

    I'd like to understand better how to approach the situation with our family member -of when and how to do pAperwork and make decisions for her quality of life which :( right before our eyes is fading?
    Diagnosis-stage 4 melanoma spread to -eye-breast-liver also tumor on hip... currently on 2 round of Immune therapy... side effects/ sweeping of feet -exhaustion -not eating-mJor weight loss--?? We are currently beginning to start process of where to start to help her... only been two months and drastically has changed our lives.. my heart is broken - but will proceed to Hope!

    19 Answers from the Community

    19 answers
    • melanomamama's Avatar
      melanomamama

      Don't lose hope. I'm six years out from my Stage IV melanoma diagnosis, and today I got word that both my brain MRI scan and my full body PET scan were clean and clear. That's after five surgeries, two kinds of radiation, and two kinds of immunotherapy. The melanoma has been on my back (a mole), a grapefruit sized tumor in my gut, a 9 cm inoperable tumor in my chest, a small tumor in my buttocks, and a golf-ball sized tumor in my brain. And I'm presently NED. (Meaning no evidence of disease.) It's miraculous, because I've been at death's door at least four different times.
      If your loved one can access a social worker through either hospice or palliative care or the hospital, that person can advise about advance directives, medical powers of attorney, and such, and will also provide an estate planning checklist. They are experienced at helping people focus on the practical things that should be done so an estate is not left in disarray.
      Constance Emerson Crooker
      www.melanomamama.com

      over 5 years ago
    • cam32505's Avatar
      cam32505

      I agree that a social worker is a good place to start. They can help get you what you need to proceed.

      over 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      In a case of rapid decline I would press the doctor for answers on exactly what is happening, and what they are planning on for the next steps. If she is on a plan of treatment to try to maintain a certain level but she is declining, it seems the doctors would be alarmed about it. Call and get answers. If this was expected, then it seems that Hospice care should be in the conversation. We went through this with both parents, it's always good to keep hope, but at the same time get honest and thorough answers about the reality of her prognosis. I wish you all the best. Sorry for the situation, I know it's hard to do.

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      CALL HOSPICE Immediately and have them come out and assess the situation. You DON'T need a Doc's Permission as ANYBODY can call. They will get your records etc or you may have to get them. THEN....Check out my Profile Page for some Good Nutrition Ideas to give you some more bullets in your gun to fight back.

      For Eating I'd start on Smoothies and Veg Juicing immediately...Very Nutritious and Delicious. Take a little power back and TRY and work on her health. Maybe it's too late and maybe it's not. THE BODY always wants to heal as it is designed to be self healing. Chemo and Radiation is debilitating and after the body needs to get it self boosted up. THIS IS JUST my opinion as I realize this is a very serious situation......It' Ain't Over till it's over......Sorry for this horror.....we all have our own but we are here for support and sometimes out of the box ideas.....You never know what will work. AND sometimes it's just time to move on. HOSPICE is wonderful and are great in Pain Management....call NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

      over 5 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      I don't think you can just call hospice. I believe the Dr must certify your prognosis as being 6 months or less to qualify for hospice. Once that's done, then hospice can be involved.

      I do agree that involving hospice may be a good idea. Please speak with your Dr on the prognosis of your loved one. It may be time to seek help from a good hospice group.

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      You need your records but you don't need a Doc's Recommendation.
      You NEED help and THEY are the right place to get it. It doesn't mean it is over either. When I was Hospice Nurse some patients got better and were booted off. Some patients when they stop the debilitating cancer treatments feel so much better. Gives them a little hope and a skip to their step. The Family is helped also and Hospice has Spiritual Help.

      over 5 years ago
    • meyati's Avatar
      meyati

      Different clinics and areas have different rules about hospice. If you don't get any help from the clinic or you can't contact a hospice---Contact your State Department of health-- and Insurance. You'd be surprised on how they can and will help you with things like this. A call from a secretary about this issue- and the clinic- hospice will toe the line.

      The final directive in 42 states is called 5 Wishes-----it covers funeral, do you want music in hospice, sets up the legal medical representative and back up, questions about life support, do you want to wear a diaper, back rubs, Oxygen, IVs, tube feeding, pain control, etc.

      over 5 years ago
    • meyati's Avatar
      meyati

      I just checked online--and found hospices listed here, even the one in my plan, that the counselors said that I couldn't contact, etc. If hospices are advertizing-I think that a person can contact them---so contact the hospices- read their reviews. I'm sure that they'll help you with your insurance-medicare-whatever

      over 5 years ago
    • buffcody's Avatar
      buffcody

      Lots of good advice above. I wont try and sort it all out and improve on it. I couldn't. A couple of considerations I feel are important though. Hospice requires the end of treatment except for palliative treatment (treatment to make the patient feel better on all levels). However, there is palliative treatment that is provided more and more by cancer centers to assist patients who are continuing treatment and need help of various kinds that will assist them to feel better and cope tither their situations. I have Stage IV melanoma and the group I work with of this sort consists of a social worker, a physician, a nurse, and a chaplain. It's called a Quality of Life Program and is under the direction of the local cancer center. They can help with a variety of needs, but it is not hospice. I found out about the resource through the local hospital.

      over 5 years ago
    • meyati's Avatar
      meyati

      My type of cancer is rare-and leads to radical face surgery without much reconstruction--the social workers, nurse navigators, and chaplain all walked off. 2 of my doctors brought up this issue and told me that they'd help me. One way they are helping me is to enter that I'm a good patient-and one oncologist is filing charges about this. They were so callous or arrogant that they left a paper trail.

      over 5 years ago
    • Hope4Barbie's Avatar
      Hope4Barbie

      Thank you all for such great responses! As of today -Attended doctors with family member-(weekly visit) unfortunately the prognosis is getting worse -her liver is shutting down rapidly...:( other fActors have also made her feel worse.. TODAY WAS A HARD DAY... we have discussed options and will continue to do all we can to help her.. As it stands pAperwork is in processing and contacting a list of care providers to help her at home. I've looked into hospice but S mentioned if she chooses this we will discontinue treatments ,which even at best might be her last HOPE-
      Each day will bring new decisions -we will be contActing a lawyer to help with taking care of estate and important issues- WE ATE NOT TAPPING OUT YET-but need to be prepared.
      Anyone with information on dietary supplements -please let me know as she is not eating and we are trying fruit based drinks-she is lactose intolerant!
      Bless you all for your time and Courage!

      over 5 years ago
    • melanomamama's Avatar
      melanomamama

      I have some observations about hospice based on my all-too-extensive personal experience. I hope you find this information helpful. You should know that helping a loved one through hospice is not anything like "tapping out." It may be the most difficult, most important, most loving thing you will ever do for her.

      When deciding whether to go on hospice, a primary consideration is the quality of life of the patient, and the patient's own decision about that. Hospice is designed to keep a patient as comfortable as possible. Sometimes family members want the patient to fight to the bitter end with cancer treatments, while medical providers say the treatments are too hard on the patient and have little or no chance of improving her health. Sometimes patients live longer, and with a more relaxed frame of mind when they stop struggling with harsh treatments, and use their remaining time talking to friends and family, listening to music, watching movies, or doing whatever they can that gives them pleasure.

      If the patient is lucid enough to decide, she should be the one to have the final say on whether or not to go on hospice. It does mean giving up on cancer treatments, but the patient can always go back off hospice if a treatment comes along that looks promising.
      If she's at home, what she'll get on hospice are, visiting nurses (not full time nursing care - that must be provided by the family or by long-term care insurance). Hospice nurses are great at evaluating the patient's comfort needs. They suggest ways to avoid bedsores, and advise whether to use a bedside commode (which they provide), or insert a catheter. They bring in an adjustable hospital bed, so the person can sit up in bed, or lie flat. They provide a "comfort kit" with painkillers and anti-anxiety drugs, and they teach the family caregiver how and when to administer those. They call the hospice doctor to order any needed prescriptions without delay. The hospice social worker helps with the end-of-life checklist of things the patient needs to tie up, such as finishing a will, signing an advance directive authorizing a family member to make medical decisions and helping the patient decide whether or not to sign a "do not resuscitate" order. They may ask whether you have made arrangements with a funeral home to come for your loved one when she dies. They also help the patient and the caregivers deal with stress. (There is also support for the caregivers later on during the grieving process.) The hospice also provides pastoral counseling if the patient wants that service. The experienced hospice pastors have special skills with helping dying patients through any spiritual crises.

      I had a long-time friend who was bedridden on hospice for three months at the end of her life. She enjoyed a constant stream of visiting friends who loved her, and who brought homemade food and little surprises such as handmade cards or flowers from their gardens. One visitor washed her windows for her, and another weeded her garden. She and I used to play guitars and sing, so I often sat at her bedside and sang with her. If her pain or agitation was more than the comfort meds could handle, a hospice nurse was always on call, day or night, to advise how to make her more comfortable. When she died, she was clutching a little stuffed kitten I had given her. I now have the kitten. I sleep with it, and I carry it with me to comfort me during my doctors' appointments.

      Neither you nor the patient need to be alone. Hospice will provide help and answers, and their experience is invaluable. They can even teach you the signs to watch for that indicate that death is near. It helps to know if your loved one still has some time left, or if it's time to gather the family around her. Every death is different, so hospice can't always predict the precise timing, but they can tell you when the patient has turned the final corner.

      My heart goes out to both you and your loved one. I hope you have time to sit calmly with her and to listen to whatever she needs to say. When she becomes bedridden, rub skin cream on her feet, hold her hand, comb her hair, wipe a cool washcloth on her brow, and sit in silence, listening with joy to her breathing. Where there's breath, there's life.

      Constance Emerson Crooker
      www.melanomamama.com

      over 5 years ago
    • meyati's Avatar
      meyati

      Hi Melonomamama, Thank you for explaining this. It makes me feel better to know that there are some places that work the way I thought that they would work. I watched my father die, and his agonies. I'm very scared of the pain. I don't think that is unusual. I asked about pain killer for when it got bad,and I was given a lecture about being a dope addict. Many people that know me a little think that I'm a Mormon because I don't use tobacco, tea, alcohol, acetaminophen, soda pop, NSAIDs. I'm in remission-as all cancer patients, I don't know for how long. I feel sad that I could have been given a little bit of comfort instead of a rude and cold shoulder. I don't know about others, but you bring comfort and knowledge to us at this site. Thank you

      over 5 years ago
    • melanomamama's Avatar
      melanomamama

      Hello Meyati. I am so sad you and your father had to suffer so. I hope that was a long time ago. Now, once the person is on hospice, the whole purpose is to control pain and suffering. There's liquid morphine in the comfort kit, and I was told I couldn't give my mother too much of it. Whenever she appeared uncomfortable, I was to put some with an eye dropper into her mouth. Whenever I did, I could see her relax.
      But if the person isn't yet on hospice, they can be more stingy with the pain killers, especially morphine. I had a friend who was hospitalized when she was near death, but she hadn't been officially placed on hospice yet. Her pain was excruciating, but the nurse said she couldn't have another dose of morphine for an hour and a half. I told the nurse to call the doctor and have him change the order so she could have it as needed. The nurse tried to ignore me, so I opened the door to my friend's room so all the other patients on the ward could hear her screaming. That did the trick. The morphine was there in short order, and they finally kept her comfortable until her death. There's no excuse for severe pain anymore. I still cry when I remember my friend's horrible pain, and that nurse's callousness.
      Constance Emerson Crooker

      over 5 years ago
    • meyati's Avatar
      meyati

      Hi, my dad did have morphine, but it got where it didn't work anymore, I'm sure that you know about that. I don't believe that the word hospice wasn't used or known about until about 1970-My father died in 1955.

      Apparently in this state a person must have labs that show internal disintegration and or heart or respiratory problems before a person qualifies for pain killer and hospice. I'm told that my lab work won't be affected, as my internal organs will be just fine.

      Doctors say that it is a shame that I cannot be a donor-my heart is described as sound as a heart of a yearling plow horse-and everything else is the same. It's just that if I don't have an accident, and the cancer comes back, it will tunnel through my brain until one of the nodules hits a vital gland and eats it out. I also know that a person can survive for a while without some of the glands or with damaged glands. I had a professor that had most of his glands beaten with a steel pipe. He laid on the sidewalk- still breathing for hours before anybody found him. Then he ended up with a steel plate and lots of hormone supplements. That doesn't give me hope either.

      My son had a spinal injury at sea. He developed mental problems from the pain, trauma, being misdiagnosed-so he's a mental patient too.

      This poor old man screamed all of the time from pain.So the VA took him from oncology and put him in the mental ward. The nurses and doctors didn't like that. Some of the patients didn't like that either. So the ward nurse comes to my son, and asks him to make a statement that the screaming was bothering him, etc. My son got so mad. He went to every patient, every nurse and aid, every doctor, and he reamed them out. He told the patients that the poor old man shouldn't be in this pain, the doctors wouldn't help this poor old man, and it could be them next. This man was a brother in arms. Wear ear plugs. Then he told the medical staff that they should be ashamed, nobody would treat a dog like that.

      That was 2 years ago. They did increase the poor man's morphine dosage. Here in New Mexico-why is it that an inpatient mental patient is the one advocating for a dying cancer patient- a complete stranger?

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      There is long acting morphine and slow acting and can be used together. Methadone can help.
      Heroin is the Best IF you can get it.....takes ALL the pain away and puts you in a nice zone.
      It's a mess and people should be able to be put out of their misery like we do mercy killing for our animals. There are a few states that allow this. ALSO....If at the end I decide to kill myself my poor wife won't get the life insurance that she will sorely need. IT'S a horrendous Mess!!

      over 5 years ago
    • melanomamama's Avatar
      melanomamama

      We have the "death with dignity" physician assisted suicide available in Oregon, but you'd be surprised how hard it is to kill yourself regardless of pain and desperation. Patients mostly keep the lethal prescription on hand just in case, and then die without taking it. They have to be alert enough to drink the drugs themselves - nobody can feed it to them - and when you're that alert, you still cling to life. But I'm glad for the law. Even having the lethal prescription on hand can ease suffering, because the patient knows they can choose their own way out of misery.
      Speaking of which, all this doom and gloom talk of end-of-life pain does not apply to all cancer deaths. I have seen more people die relatively painlessly, and just wind down like a broken clock. I asked my doctor point blank whether death from my cancer would likely be lingering and painful. He said that I'll be going along fine, it will hit me, and suddenly I'll be gone. That was actually good news!
      Constance Emerson Crooker

      over 5 years ago
    • meyati's Avatar
      meyati

      You forgot something else Barry-if you commit suicide, your burial insurance is null and void. I'm going over to a funeral home that's been around for a 100 years or so, and buy a plan-then hope that the home doesn't go bankrupt. So far, when homes have gone under, other homes step up, and honor the original plan.

      I have a DNR, but if anybody calls the paramedics-the state takes ownership of your body, and it wants you to be alive------ I knew a man with cancer in his throat around his vocal cords-etc. The family hired a caretaker. He slipped, and the side of his neck hit the edge of a counter, that opened a heavy bleeding gash. The caretaker saw this. He gargled, -NO,NO- When the ENTs came- he pointed to the DNR- and said an audible -No, no. His son came and tried to stop them, and the old man was saying leave me- let me die. So they decided that he was suicidal-and they took him to a nursing home, where he was tubed-etc. He cried- wrote on his board- Let me go home- leave me a lone- and he had a final directive. The cancer finally moved to his bronchial tubes and suffocated him. Here he was in a position where he would have died withing a few minutes, but they made him live in pain for 9 more months. He writhed in pain and agony, trying to scream. They completely ignored his advanced directive-and the express wishes of the family to let him meet his god or whatever is beyond the veil.

      My state allows for doctor assisted death, as of 3 weeks ago. A federal judge ruled. Several doctors got together with a lawyer, and these poor people in the last stages of cancer, ALS, Parkinson's, etc. testified, the doctors testified. But that doesn't signify that you can find a doctor that would assist. Then the state guidelines to even enter hospice are so strict-they want to make sure the patient will probably be dead in 2 weeks, so the hospices aren't under investigation for using beaucoup addictive drugs. Too bad they don't have some electronic pain meter for us that are extreme pain, but our systems aren't shutting down yet.

      over 5 years ago
    • daca1964's Avatar
      daca1964

      Hi there, it isn't easy. Weight lost was a big one for me lost 40lbs in first 6 months. Then there was the flu like symptoms. I had Stage IIIB Nodular Melanoma. I'm almost 5 years out. Sounds like hers has spread really fast. It's not an easy situation you are in. Take everyday as a gift. Hope it all works out for you.

      Deb

      over 5 years ago

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