• Hospice

    Asked by BudBandit on Wednesday, March 27, 2019

    Hospice

    I'm stage4b lung cancer,I saw my oncologists yesterday 3/26/19,he wanted to start a chemo cocktail,taxol and carboplatin, but my blood count wasn't right,and after I told him I was fatigued (in bed) most of the day and not being able to eat etc. he wanted to put me on hospice care,I asked him to give me a week and let me think about it.My question is ..has anyone been referred back to treatments from a hospice worker?

    42 Answers from the Community

    42 answers
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I haven't had the experience myself, but I do know someone can leave hospice care if their condition has improved or even if they voluntarily elect to leave. Generally hospice is recommended for those whose doctors anticipate 6 months or less from the end. My mom went into hospice care in May 2014 and passed away in July. But she had stroke issues, not cancer. I'm sorry you are having difficulties and I wish you all the best.

      6 months ago
    • banditwalker's Avatar
      banditwalker

      I read some of your history and your diagnosis is fairly new. Have you exhausted any other treatments? Have you gotten a second opinion? Sounds like you are not happy with your current oncologist (I wouldn't be). My husband was put on hospice care, not cancer related. Hospice told us that they now take patients who are at the end stage of life, not necessarily dying soon. They have re-upped patients after 6 months. So, evidently there are some who do leave hospice but I don't think many. There are several stage 4 lung cancer patients on this site. Hopefully they can give you better advice. So sorry. It's hard to make life decisions when you are also feeling like s##t. Hope you have family/friends to lean on.

      6 months ago
    • BudBandit's Avatar
      BudBandit

      Banditwalker,I had a bad reaction with keytruda,that was my first line of treatment,I think it spread my cancer instead of keeping it in check,then came the radiation I did ten treatments of it to shrink the tumor in my right lung because it had compressed my windpipe shut and was squeezing my left one shut,I did more radiation on my back because it had spread to my bones (spine,shoulder arm and leg) When I mentioned I was in bed all day I meant since I saw him last 3-4 weeks ago.Other than those treatments I haven't had any,he wanted me to start the infusion that day until I told him I was still having bad side effects from the other treatments.He also mentioned 7 out of ten people didn't survive that cocktail and this was the best one for my situation.No second opinion yet..don't know where to look...I do believe if I had went ahead with the infusion I would have been too weak to come back from it.

      6 months ago
    • carm's Avatar
      carm

      Hello, I am an oncology nurse and I used to work end of life care. There were times when people would go into hospice and then go back into active treatment. So...you do have that option to revoke at any time.

      6 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      BudBandit, please try to get a second opinion before agreeing to hospice. You have so much to live for.

      Are there any NCI-designated hospitals that you can visit for a second opinion? https://www.cancer.gov/research/nci-role/cancer-centers/find

      Also, radiation made me very exhausted and I didn't have nearly as much as you have had. How do you feel other than being fatigued?

      What treatment is your oncologist suggesting that kills 7 out of 10 people who get it? Those odds stink. I am pretty active in the lung cancer community and I haven't heard of a treatment that is killing the people who get it.

      Have they done genomic testing to ensure that you don't have a mutation that would respond to targeted therapy?

      I'm grasping at every straw I can think of before you go with hospice. You've been full of pep and life and have so much that you are looking forward to doing - including getting married if I remember correctly.

      On the flip side, we are here for you every step of the way, no matter what you decide. I'm praying for you.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      My experience with my mother in a nursing home in hospice was not pleasant. Every time I asked them to do something for her, they would say "isn't she in Hospice?" (She was removed from Hospice because my dad wanted her to have a wound vac on her bedsore, and I believe they allowed her to die because she had been on hospice previously.)

      I don't recommend Hospice in a nursing home.

      6 months ago
    • DanielD's Avatar
      DanielD

      BudBandit... Easy for me to say but I gotta agree with LiveWithCancer. Have a second set of eyes, another opinion.
      This is a list of 101 good cancer programs -- granted it's dated 2016. There's one in Mississippi, an hour from you. My guess is that's where you are: St. Dominic-Jackson Memorial Hospital.
      https://www.beckershospitalreview.com/lists/100-hospital-and-health-systems-with-great-oncology-programs-2016.html
      There's not much else reasonably close to you. Still, it may well be worth a trip for a second opinion.
      MD Anderson in Houston is top rated in the country, 7 hours from you. A phone call costs you nothing. I'd bet distance is an issue they've dealt with before and they may well work with you in ways you hadn't thought of. That's true for me -- I got second opinion from Abramson Cancer Center at PennMed and they have been amazingly helpful and supportive.
      Again, I know this is easy for me to say.

      6 months ago
    • BudBandit's Avatar
      BudBandit

      Liveswithcancer,I haven't been able to keep anything down,nausea, meds don't work,even the protein drinks don't stay down.There is alot of pain in my left shoulder and arm,I'll wait till the headache starts before I take a hydrocodone.I have just got to where I could swallow,throat was messed up from radiation,I ate fairly good then with a 50/50 chance of it staying down.I'm dizzy and off balance alot,I just lost all my energy it seems. The treatment he was going to use was taxol and carboplatin.He said that was my best option and all the other options would be the same ratio for me.I'm pretty sure there was no other testing done.They never can get a good BP reading from my left arm...it doesn't even register.I believe between that and the reaction I had with keytruda and just finishing double strength radiation to my spine it has taken me a couple notches down.Maybe he sees more and knows whats in store more than me.Maybe I am having a hard time accepting the fact. Thanks for the smile at remembering my wedding :) I was married this past Saturday.My brother,which is also my best friend,reluctantly said hospice might be best.When I first found out I had cancer I had said I didn't want to go through all the side effects and misery of chemo just for a few months tacked on to my age.Someone here said quality not quantity.I have alot to think about between here and Tues.BarbarianBham,I will be home if I decide on Hospice I hope that hospital bed they bring don't influence my decision :) It sounded like you had a bad experience with the nursing home and not hospice tho.

      6 months ago
    • BudBandit's Avatar
      BudBandit

      DanielD,I am currently going to University Hospital,in Jackson.I'm not sure if medicade covers second opinions,I certainly can't come out of pocket with it.I think I will call St.Dominic and see if they can look at my chart and give me other options as for treatment or at least better odds :) Thanks for taking the time and doing the research for me,How is your "journey" going?

      6 months ago
    • DanielD's Avatar
      DanielD

      I know one instance in which Medicaid DID cover second opinion. The cancer center where you get the second opinion will help you work through that if it's an issue. They'll typically have staff whose job that sort of things IS!. In addition, there are financial aid programs in which the hospital may cover it for you.

      6 months ago
    • DanielD's Avatar
      DanielD

      BudBandit... at St Dominic's website https://www.stdom.com/
      Search "financial aid" and "medicaid". There's info regarding both. And nothing takes the place of calling em up and letting someone talk you through what you need to know, what's best for you.
      Initial call to St Dominic's... I looks like the number is[phone number redacted].
      And check out this page regarding initial consults for cancer patients:
      https://www.stdom.com/services/cancer/new-patients/
      AND....... if St Dominic's can't work with you financially I'll bet MD Anderson in Texas will....... it gets TONS of federal $$ and is very well financed... 7 hours from you...... who knows.. there might be a work around.

      6 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BudBandit, congratulations!!!! Your wedding snuck up on me!!

      DanielD has great advice.

      I have a good friend who has fought one kind of cancer or another for 25 years or so. Lately, it has been lung cancer that's been her challenge.

      About 4 years ago, the doctor she had seen for many years and through many cancers told her that there was really nothing more that they could do for her. She had a tumor they just didn't know how to address.

      She got in touch with me ... but also did a ton of research otherwise ... and ended up switching to my doctor. She's still here. She and her husband are going to Switzerland in a week or two for about 3 weeks. She's been in chemo for bone metastases and will remain on chemo for the rest of her life, barring a miracle, but she's still out there living. She gets really, really sick that first week after a treatment, but that leaves several weeks when she can still see her friends, go to dinner parties, fly off across the world...

      It might be the cancer that is causing your exhaustion, but it could definitely also be the effects of the radiation combined with not being able to eat. i wish I had suggestions to help with that because getting your strength back with nourishment would help a lot.

      You're in my prayers. And, congratulations again on getting married!

      6 months ago
    • wmsavs' Avatar
      wmsavs

      Hi @BudBandit, congratulations on the wedding. I wonder another suggestion may be to contact Medicaid, telling them of your situation, your dissatisfaction with current oncologist, asking them for guidance and perhaps a permissible second opinion? I also urge you to consider what both @DanielD and @LiveWithCancer suggest. A second opinion can potentially provide insights your current oncologist may not have knowledge of.

      6 months ago
    • MissWiz's Avatar
      MissWiz

      Have been through this with my father who had stage IV colon cancer. Instead of hospice care look into Palative Care. It will give you more options. Support you during continued treatment, and if then needed will be able to transition you to hospice care if needed later.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      A key to choosing somewhere to go is to find out if they are for-profit or not-for-profit hospitals. It seems you have more financial help at a NOT-for-profit hospital, where they treat indigent and have financial help. My hospital waived the deductibles for surgery and co-pays for me, although I had good insurance for the rest.

      As wmsavs and others suggest, you should call Medicaid to ask if they cover a second opinion.

      Examples of what I would check into is a stomach feeding tube IMMEDIATELY for nutrition to build you up and make you feel better. You can get them with an outpatient procedure that's easy and makes a difference, and then if you want, they can be removed later. After you feel stronger, you might be able to handle the chemo the doctor recommended.

      Has your doctor been giving you prescriptions for nausea like Zofran, etc.?

      I don't know where Yazoo City, MS, is exactly, but Birmingham, AL, can't be very far away, and UAB (University of Alabama at Birmingham) has a medical school and medical center that has a NIH National Cancer Institute-designated Comprehensive Cancer Center. I go there and think it's great, but if you live closer to Tennessee, Memphis and Nashville also have one. Here's a link to the complete list by state, with phone numbers.
      https://www.cancer.gov/research/nci-role/cancer-centers/find

      I know UAB takes Medicaid patients, and you can talk to their financial counseling office about financial assistance. UAB's toll-free number is [phone number redacted].

      Best wishes to you. Don't give up without getting a feeding tube to give you a chance. I arranged one for my mom by calling her Gastroenterologist and telling the nurse she was starving to death and lost lots of weight, and they called back & said to bring her in the next morning about 6:00 a.m. She was sedated and went home the same day.

      The American Cancer Society has a free place to stay in Birmingham, so give them a call. Don't give up.

      P.S. If you are a veteran, check into the VA Hospital.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      UAB's phone number didn't show. Toll Free: 1 - 8 0 0 - 8 2 2 - 0 9 3 3

      6 months ago
    • KB2013's Avatar
      KB2013

      I'm confused re: hospice as a service for cancer pts who aren't within two weeks of dying. Maybe it's just my local area but, I was told if you opt for hospice, you will not be given any drugs for treatment, only comfort. Anyone know?

      6 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Hi KB. Generally it's not people who are expected to die w/in 2 weeks -- standard is w/in 6 months. But for the most part, you are right. They don't treat you for what you are dying of. If you had, say bed sores or pink eye, they would treat that. But you can always opt back out of hospice, too. Like if a new treatment for your disease comes available. Or you just decide you want to keep going.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      KB2013, as BuckeyeShelby described, the Medicare coverage rules are that you have to SIGN that you agree that you will have medicine only for diagnoses to keep you comfortable, and your doctor signs that you will probably die within six months.

      My mother had a bad bedsore, and the wound vac was finally used to help it, but Medicare required that she had to be taken out of Hospice to get the wound vac.

      Buckeye Shelby, with my mother in a nursing home, what's the purpose of Hospice anyway? (My sister signed for Hospice with my 92 year old father, and I didn't agree at all.)

      In fact, what's the purpose of Hospice even at home?

      5 months ago
    • macfightsback's Avatar
      macfightsback

      Barbarain Bham, KB2013 and everyone else, Interesting discussion. I agree with many comments above regarding getting a second opinion, at a comprehensive cancer care center. I have heard many people online who got a second opinion because their initial doctor told them there were no more treatment options. They did get an opinion and they are still around years later to share their story. As far as the cocktail of Carboplatin and Taxol, it is commonly given as Frontline chemo for Ovarian Cancer. I received it too. It is tough but I am not sure 7 out of 10 patients do not survive statistic. I am not sure how accurate that is! I am an experienced critical care nurse and also someone with stage 3 C Ovarian Cancer. Hospice is for end of life, Comfort Care. I was told it is a 6 month period of time or less someone is expected to die. It means you have given up receiving any therapeutic meds, treatment or procedure. It means there is no hope for survival. Everything is done to keep.you comfortable but not to heal or repair you. You can change your mind if you want but there is no guarantee that you will be allowed to join it later. Hospice in NC paid for my Dad's meds, C-PAP , supplies, Home Health Aides so it is an awesome resource for those who are not going to live much longer. Often loved ones or the patient will change their mind as their loved ones condition worsens and an ambulance is called. That is everyone's right but there are consequences. Once EMS is called Hospice is over. That is why she could not get a wound vac on Hospice. If you need uncontrollable symptoms helped but are still requiring/wanting treatment, Palliative Care is the way to go. You do not get the same kind of support as Hospice but you will get extra help controlling symptoms like pain, nausea, constipation, shortness of breath ect. I hope this helps. I have heard of a couple of Ovarian Cancer patients who went on Hospice for 6 months, started feeling better, went off Hospice and started treatment again so that does occasionally happen but not often.

      5 months ago
    • Gumpus61's Avatar
      Gumpus61

      Wow...... Hospice is a complete support system for patients considered incurable with aggressive treatment. Hospice relieves the load on care givers as much as patients. Hospice is part of the Grieving process and makes the end of life approach real for those in denial. They provide the following services:
      Counseling and support for Family members and spouses.
      Delivery of prescription drugs
      Rides to appointments
      In home visits by nurses
      In home support equipment like hospital beds and oxygen generators.
      Answering every kind of end of life question for the whole family.
      Providing all the medicine needed in the home for end of Life consideration.

      My Mother Died of Cancer and a family in Denial waited too long to call Hospice. They visited and she passed that night. It would have been much less of a trial for all had they been brought in sooner.

      My wife just entered Hospice. After 5.6 years of treatment for a Uniformly fatal and rare cancer where we lived as much as we could as if we didn't have it. They definitely helped Ann understand and expect that after 6 recoveries there was no gain in being miserable treating to achieve a 7th. Now......Ann is the healthiest Hospice patient there could be. With steroids helping her energy we are having good days without the misery of chemo. Folks.......Fight like XXX.....but know when to say when. Only survivors are writing on this site, they don't know Hospice like us care givers, because they don't need it.........just know that we all will one day.

      5 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Barb -- my mom was in hospice care while at a nursing home. Mom had gotten to the point where she was refusing to eat, refusing to take her meds, refusing to allow any kind of medical testing, even taking vitals. She was throwing food across the room. THAT is why hospice was called in -- she'd had a stroke, she wasn't going to get better and she was done, darn it. I could have used the hospice services associated w/the facility, but I chose an outside agency. To my mind, it was additional eyes on her. Also, it brought more visitors to mom -- through hospice, she had a volunteer, nurse, social worker and chaplain. And she truly enjoyed their visits. As the hospice was through my hospital system, I was very comfortable w/them. That hospital group got me through my cancer treatment -- not the hospice, just the hospital. But they are all one big family of services.

      Gumpus -- I'm sorry your wife had to go into hospice, but I'm so glad to hear she is feeling well and is enjoying a bunch of good days. May the good days outweigh the bad.

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Buckeye Shelby, thank you for the info. I didn't experience the positives at the nursing home my mom was in. .

      My Mother tried to climb out of bed and broke her FEMUR about 2:00 a.m. one day. The Hospice nurse didn't arrive to look at her leg until 2 p.m. and said it was broken and she needed to go to the hospital, where she had surgery on her leg.

      macfightsback, we didn't call EMS. The nursing home waited for Hospice, who didn't come for 12 hours, although it's possible that the nursing home didn't call when it first happened. . . Would anyone here want to wait 12 hours for a broken leg to be treated?

      I would NOT recommend a hospice situation in a nursing home, due to the delay in getting things approved, plus miscommunications. It turned out the nursing home doctor was out of state at a funeral and never saw Mother after her leg surgery to prescribe her medicine to continue as indicated by the hospital discharge papers. That explained why when her leg and her arms swelled and an RN commented she looked septic, why she wasn't given any medicine and died 2 days later. The nursing home never told my family that until she died there 11 days after admission, and their doctor wouldn't sign the death certificate.

      I see no advantage to being on Hospice in a nursing home, only negatives. She would have had better communication and care from the nursing home without Hospice.

      5 months ago
    • macfightsback's Avatar
      macfightsback

      BarbarainBham,. I am so sorry about what happened to your mother. I have only delt with Hospice in my father's home which is the best situation for it. Hospice in a Nursing Home would not offer what others expect. Some people need extra nursing care and support in a facility because the family is unable to care for their loved at home. In a nursing home situation you do have a choice to call EMS if they are moving too slowly, 12 hours is negligence in my opinion. Of course once you call EMS, she is off of Hospice. I would call 911. It is ridiculously cruel to make someone wait over 12 hours for medical care when someone has suffered a trauma. I believe that nursing home should be investigated. It should be closed. I bet Medicare would close them down for such horrible lack of care. I am so sorry again about your Mom. As a healthcare provider myself, family involvement and support improves the quality of life for patients and how well they do. It is not a guarantee but it really helps. It sounds like your Mom could not speak up and be her own advocate. I am sure you and the rest of your family did the best you could. The Nursing Home violated your trust. You expected, as you should have, that she would receive a certain level of care and they failed miserably. I would talk to a lawyer about what can be done and file a complaint with Medicare and any other organization they require approval from to stay open. You can't bring your Mom back but maybe you can prevent this from happening to someone else. My prayers are with you and your family.

      5 months ago
    • KB2013's Avatar
      KB2013

      Gumpus61, you have made the wrong assumption about the people on this site, people who are also patients. We aren’t unaware of what our caretakers (if we have one) experience both physically and mentally. Many of us, myself included, have assumed the role of caretaker (caregivers are those who provide medical care, common misnomer). Personally, I was caretaker to both parents who suffered incurable, remissionless cancers and took care of all their life’s remaining legal and financial obligations after the funerals. My father got cancer years before my mother, I was 37. We were alone 24-7, in/out hospital. At home, I slept by his bed. By day I had to try to answer his unanswerabe questions as to where all his friends were. Friends of a lifetime were nowhere to be found. His wife, my mother, wouldn’t go near him, fearing cancer was contagious. Cancer kills...lots of things. I rode the ambulance with my dad, more than once and stayed in his hospital isolation room so he wouldn’t be alone. Then one day I told a nurse I was going home to get cleaned up, change clothes. She said she’d keep an eye on him. I no sooner got home then the phone rang, they said he couldn’t breathe. I got to his room, three nurses were just standing there watching him suffocate. Blood disease, they weren’t even trying to help him. I saw the terror in his eyes as he struggled to say, “I’m worried about your mother” and I told him “don’t you worry about anything” and he died. I closed his eyes as my heart fell out of me. Had he taken hospice, he’d have been dead sooner and he knew that so, turned it down.
      You say ‘we’ don’t understand hospice? My mother wanted hospice after a year into her cancer so I moved her to a facility and after one week, she was euthanized in the wee hours, as I sat bedside, watching a tv documentary on the death and ressurrection of Christ, (how apropos). Rapid breathing, (from the drug) not awake/aware, doped to the max, Christ was at Calvary. I dozed off then woke to the empty sepulcher. I’d only been dozing a few minutes. I sat up and saw my mother was dead. I closed her eyes and summoned assistance. The funeral home arrived and I stood bedside as they bagged up her corpse and laid her on the gurney. I wonder how they manage to get past elderly residents pushing one of their deceased former dinner mates...I don’t know that secret.
      Now, I have Stage IV, know others who rely on hospice to ready their family members for death and swear it was a blessing to have hospice but I’ve also known pts who reluctantly chose hospice to alleviate burdening their families.
      I know others on here have also served as CARETAKERS and not just as cancer PATIENTS and have stories to share as well.

      Infernus non habet furor

      5 months ago
    • macfightsback's Avatar
      macfightsback

      I am sorry you went through this KB2013. Was your mom suffering and requiring alot of medication for comfort? I have been a caregiver of my Mom and Dad, my Dad was on hospice at home and I am a nurse who worked in ICU for over 35 years. So I have been on both sides of this. What state did this happen in? I am in NC and we do not euthanize patients here. If someone is dying and the patient or their family wants them to be kept comfortable those people are given medications to help them relax and ease the pain. The medications are only given to achieve that goal. The side effects of those medications can hasten death. Whomever is requesting those medications is instructed about this risk. Most choose to be more comfortable or for their loved ones not to suffer. Hospice can be done at home. My Dad wanted to go to the hospital so he would not burden us. My sister and I said No, he would never be a burden. We cared for him at home. He was awake and alert u

      5 months ago
    • macfightsback's Avatar
      macfightsback

      Continued. until the end. My sister and I were by his bedside when he died. It felt like a kind and natural event. He was only on Hospice at home a week before he died. We called the Hospice nurse the evening before he died because he had a lot of trouble breathing and she told us to give him all of his meds. He was able to sleep well that night but began to struggle again when he woke up the next morning. Of course, it was hard watching him die. We were with him. This is what hospice is supposed to be. Of course, not everyone has the resources to do Hospice at home. So sorry all of this happened to you.

      5 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @KB2013, I literally have tears in my eyes after reading about your journey with your parents. How very heartbreaking.

      I too took exception at Gumpus assuming that we cancer patients are unaware of what it is like to be a caregiver. That's very closed-minded of him.

      I have stage IV terminal cancer like so many of us here do. But, I also have a husband who has had quadruple bypass surgery and all manner of other ailments. I am his caregiver more so than he is mine. Neither of us resents the other and neither of us resents the fact that we have health issues that offer challenges.

      And, having lost my 43-year-old son suddenly ... I know the devastation of losing a loved one so quickly that you don't get that final hug or final goodbye.

      So, to assume that we have no idea what the caregivers go through is ridiculous and short-sighted. My dad and stepdad died of cancer. I helped take care of them. It prepared me in some ways for my own journey.

      With all of that said, I was sad that Ann has chosen to go into hospice though I certainly understand and support a person making that decision after a long run with cancer (or any other health issue).

      5 months ago
    • KB2013's Avatar
      KB2013

      macfightsback. No, she wasn’t in pain. She trusted her gp who she’d been going to since he got out of med school so I think when he told her she could receive palliative care and it would be better than cancer treatments at her age (80) and recalling my father’s misery, she chose not to treat. She was diabetic with high bp and afib before this diagnosis so maybe she was just ready to go as her spouse, siblings and friends were all gone.

      5 months ago
    • KB2013's Avatar
      KB2013

      LiveWithCancer...as one who follows you, I’m aware of your experiences and the loss of your son. Your perseverence is remarkable as has been your contributions on WhatNext as well as those tv features and the links to issues affecting cancer patients which you post here. I wish the best for you and your hubby — :)

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      macsfightsback, thank you for your comments about the nursing home. My mother died in October 2016, so I fear it's been too long, although I agree they have some problems. I was too distraught immediately afterwards to complain.

      I live in Alabama, and another issue was that my mother had previously climbed out of bed and broken her arm at the previous nursing home, so my dad told the "new" nursing home about that and asked if they had a way to keep her in bed. They claimed it was illegal to restrain her, so he agreed to having her bed kept closer to the floor, so any impact would be less if she fell. Problem was every time an aide came in, they pumped up the bed to make it convenient for themselves and left it that way, so it was rarely close to the floor unless one of us lowered it.

      Everyone should be aware that on the internet, Medicare Patient Rights say that it's illegal to restrain a patient UNLESS they are a danger to themselves. My mother had some dementia, especially when she had been asleep, which is why she kept trying to get out of bed when she was too weak to stand alone. An RN at the nursing home told me they had one patient who was restrained for similar reasons, but the family had to get an attorney to make it happen.

      GUMPUS, please respect the fact that everyone has their own varied experiences, including as caretakers.

      BUDBANDIT, please update us on what you chose to do. Remember that Birmingham, Alabama, where UAB Comprehensive Cancer Center is located, couldn't be very far away from where you are. (University of Alabama at Birmingham School of Medicine) Also they may have research options not available to the general public that may help you. I suggest you TRY anything to give you more time with your new wife! The sunny Spring weather we're having is very uplifting for travelling, too. Wishing you the Best.

      5 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Barb - yikes! Your poor mom. I'm not sure if that's a specific hospice issue or a specific facility issue. Either way, that is horrible. I completely understand your issues w/hospice care.

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      BuckeyeShelby, I agree, but I think the confusion was partly caused by the question of who was in charge of her care because she was in a nursing home. The rep only visited her in the afternoon. Hospice at home would be totally different.

      One interesting thing is they told me before she went there that if she had to go to the hospital for any reason, that a Medicare Advantage policy would have a waiting period before they would cover her care. Luckily she was on original Medicare.

      5 months ago
    • BudBandit's Avatar
      BudBandit

      Barb, thanks for your feedback and concerns,and everyone else that has offered suggestions and advice,DanielD and Livingwithcancer. I did set up an appointment with the facility DanielD had located,St.Dominics. I had a visit with him and he also thought I should wait 2 weeks to give the radiation effects time to wear down,to see if I can eat and get my strength back. That was last Thursday, this is 4/15/19. He gave me more steroids and a stronger pain killer and it was the first time in weeks and maybe months I had been able to get out and about. I also got a test result from the first radiation treatment for that lone spot in back of my brain. He took a gamma knife to it that first time. That was a couple months ago. It is stable: not growing or going anywhere but... when I got back home the radiololgist who did the surgery called back and said that they found 4 more places in my brain,3 up front and one in back..where it joins my spine. From what he could see of the head scan it had spread yet again down my spine even though I had just finished treatment on my spine for what a cat scan had picked up. It now looks like I have fluid building up on and down my spine (and brain). He has a full body scan (the radiologists contacted oncologists #1) set up asap..I will be seeing oncologists #1 in the morning and he is going to tell me what to expect with that and what the new test result means.. as with the decision..I'm leaning towards hospice right now. This stuff is taking off too fast and spreading too far and I'm not taking any of the treatments well so far. And from what I read the real nightmare is with chemo,so far its been a bad reaction to keytruda and radiation..if thats what you want to call a bad reaction. I have lost about 30 lbs in 4 months and the sickness started back again yesterday. Its pretty devastating, one minute get your hopes up and the next somebody throws gas on the fire just when it was cooling down. It's also hard to see the sunshine outside and not have the strength to get out and enjoy it. I was hoping that would give me more bounce..It didn't do what I thought but then none of this is going like I thought..

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      GUMPUS61 plus everyone,
      Thanks for your reply listing what Hospice does, but I think those things are provided by Medicare for anyone who asks. I could be mistaken, but in the distant past before Mother went to the nursing home, her doctor ordered home nurses and occupational therapists to the home after her hospitalizations. My grandmother had a hospital bed provided at home.

      With a doctor's prescription, I think the other services are available also, with the exception of medicine delivery and transportation to appointments, which we didn't need. Counseling is available if you ask.

      Very informative, especially hearing the variety of help.
      Thanks, everyone. Best wishes.

      5 months ago
    • macfightsback's Avatar
      macfightsback

      BudBandit, You deserve the best chance you can get. It sounds like a palliative care consultation may be helpful. Palliative Care is NOT Hospice. It is for controlling hard to manage symptoms like you are having, nausea, poor appetite, pain, constipation, diarrhea, shortness of breath, the sickness which is coming back for you ect. I had one in 2015 and they helped me. They might have ways to help you get your strength back and help you feel better. I wish you
      the best.

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      BudBandit, I guess only you know when you can't take it any more, but I'm pulling for you to try as long as you can. I've learned on this WhatNext blog that when you think it's the end, to ask the doctor if there's a clinical trial/research appropriate for you. . . .Wishing you the very Best of Care!

      We'll continue looking for your updates.

      5 months ago
    • macfightsback's Avatar
      macfightsback

      I agree with DanielD and Live With Cancer. Once you can get some relief from your misery, you will be able to think more clearly. I can not imagine how overwhelming all of this is for you. There are many people who have gotten a second opinion and gotten a second chance. It would be worth your time to look into it. Others on this site have discussed resources you can take advantage of regarding financial help. We are all rooting for you.

      5 months ago
    • wmsavs' Avatar
      wmsavs

      @BudBandit, we cannot walk in your shoes or feel what you're feeling. We can offer suggestions that may provide better comfort or even better long-term outcomes. You still have some degree of "fight" in you I am sensing and do not feel you are quite ready for hospice. I do agree with @macfightsback would be more helpful with your ability to control your current issues and assisting with you regaining your much needed strength. Do you have anybody- friends or family with you?

      5 months ago
    • BudBandit's Avatar
      BudBandit

      I just returned from my visit with oncologists #1,I asked him about the palliative care he said he was going to check to see if I qualify.By that,he said once something or the other in my blood gets to a #2 level its going to be to late for chemo or anything,I'm either right there at it or I am there.He is going to set up more scans head to waist or toe,whatever.I am going to stay with his decisions, all the records are there,the equipment and the ppl already familiar with my case.I told him I will accept his best decision and that I wasn't ready to throw in the towel yet,at the same time,I don't want to be on feeding tubes and iv's just for my next treatment.The juggling between 2 drs.at this point seems futile so to make it less stressfull I'll just take what comes. Dr #2 scheduled a checkup to see if I was eating or gaining weight back that appt is a week or so off so I'm going to cancel it and see what these new tests are showing and see what dr. #1 wants to do.I also asked about the clinical trials and I didn't have anything in my criteria that would benefit anything.Wmsavs,I do have have family and friends around but not close,of course my wife is.My brother, this pass weekend, drove four hrs. one way and we watched a 3 hr.movie together and he went home :) Tried to get him to stay the night but he had to go. I'm grateful for the time,don't understand why he drove that far for a movie, but that felt good.

      5 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Awe, @BudBandit. I'm so sorry that the test results are not coming out more in your favor. Sometimes the cancer is just too fast and too stealthy.

      You are in my thoughts and prayers. How I hope your doctor can pull a rabbit out of his hat. In the meantime, your attitude amazes me. Probably one reason why your brother was willing to drive 4 hours to watch a movie with you!! It was worth those three hours together to drive 8 hours. I'm glad he came and you enjoyed the time together.

      Big hugs are winging their way to you ... and lots of prayers are being said on your behalf.

      Please let us know what you learn. I'm pretty sure you're making the same decisions I would, if I was in your shoes.

      5 months ago
    • wmsavs' Avatar
      wmsavs

      Wonderful visit with your brother @BudBandit and glad that your wife is with you. You and your brother gained a lot more by spending that time together than just watching a movie together and I think you know that. Please try to consider that second opinion to just make sure that first doctor is calling the right shots. In the meantime, please continue to keep us posted.

      5 months ago

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