Because of new updates and not good ones, I have a very basic question. Unlike many, I have no family, no siblings, no husband, no children, etc. I have been on my own for many years.
Since day one when diagnosed, nobody ever came with me and I have been to every cancer center always by myself. Friends live out of state, and have jobs and families, etc.
Because of this new update, with now tumors (I thought it was one, but now found out there were two that have doubled in size) and my onco mentioned these may be "treatment resistant." It appears the tamoxifen and afinitor may not be working for these liver tumors. It is already in my lungs and spine for a while.
I have one friend that lives in FL and they had agreed (like three years ago) that they would come and clean out my apt. when that time comes. It was already understood that they will not be able to come while I am in the end process or be with my when dying.
Now, they are telling me that when I die, they may not be able to come here for a week or two depending what is going on.
So no matter what, I will be in the hospital alone and then hospice alone and no one will be coming to visit.
I need to know. How do you know it is the end. This has been about five years now but the tumors in my liver started in February and had doubled by my CT Scan in June.
It appears the meds are NOT working. I am scared. How will I know that it is the end? What happens? I do NOT want to go to a hospital and I know if they cannot help me, I will be moved to hospice in the Bronx (I have never even been to the Bronx).
I am having major anxiety attacks. Nobody to talk to. Most friends fell by the wayside once I had stopped working so this has been a solo trip for me.
I need the truth. I need to know what happens when it goes to your liver and it is treatment resistant. How long do I have about. What will make me have to go to the hospital. The stress alone is hard to handle.
Can someone just , if they know somebody else, that passed from this how it happens? I am just alone and need some kind of answers. Not reassurance but hard cold facts bc the more I read, the more I get confused. I think I have less than a year. I have to make my own plans for my cremation and I do not even have the money on hand. I have a small life insurance of $7,000 that I left to my friend in FL. I figured that would be enough to cover the cost of them clearing out my apt. but now they have all these restrictions. We can't come around the holidays, it may be a week or two before we can go to NY, etc, etc.
I know nobody knows the exact time but I really need to have an idea bc the stress of not being sure how this happens is more scary to me than the reality.
Thank you.
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kearnan
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Hi,I don’t have any insight about the questions you are asking, but am thinking you need some support close by. Where in NY do you live? I am from NY as well. I live in Central NY. Aren’t there any other treatments available to you? Sounds like you are on oral agents. Have they tried any IV chemo? I am not bothered by your questions at all, but saddened you feel you need to ask them. ❤️
My mistake in the beginning was that I had never even been hospitalized before or really ever even sick. So I had no idea what to expect or questions to ask.
It was when I found this forum board that I learned much more than what I learned from my onco and then began to ask questions. What is a big learning experience, is the friends that disappear, the ones you least expect and the very very few friends who you do not expect to step up a bit.
Oh yes my dear, friends and in my case my own family is not available to me. Thank God I have my son, his father and my girlfriend crew and pastor to check in on me. Do you attend church? virtually?
I live in Brooklyn, NY. Things are now getting a bit worse and my palliative care doctor is starting to talk to me about hospice and blah, blah.
I asked my onco exactly what should I expect towards the end bc I live alone, have no family and no friends close by. I mean was I going to just wake one day and die.
So she explained it to me and of course, now I wish I never asked but I need to be prepared myself.
I am super super angry that NY is not a die with dignity state. Something I never thought about before. I am angry beyond belief that my breathing will get much more harder, I will wind up in hospital and then shipped off to hospice. I am angry that I need to go through this. I cannot do hospice at home bc once the nurse leaves after 4 hours, I would be completely alone so that is not feasible for me.
I wish I lived in NJ. I would love to be able to clear up some matters (like clearing out my rented apt.) and other minor things and then be able to say I am ready to go without having to go through what I was told.
They put animals down if they are suffering, so I am just angry that NY does not have that in place. It would give, in my situation, more much comfort to know that I will be the one that says enough is enough. So my anger is very immense bc I will not have the choice.
I feel like there must be a support group somewhere near you that will have resources and patient navigators that can help with things like this. If you are in new year what about Sloan Kettering? mskcc.org/experience/patien...
I have dual coverage of Medicare and full NYC Medicaid. In order to be able to get both, a volunteer attorney from NYLAG helped me set up a pooled trust fund. Center for Disability Rights (CDR) in Rochester is the one. The attorney goes to various cancer centers and says she does about 500 a month for people.
I do not even have to pay for Medicare or an rx subscription. Medicaid pays that for me so my entire SSDI is mine. But to qualify for Medicaid, I am $1,800 over the limit for a single person, so CDR automatically takes it out of my SSDI but then it is set up so that they automatically mail my rent every month and I scan them my credit card and Verizon bill and they put it out of that money.
Medicaid does not count the money in the pooled trust so now I qualify. I have no copays for anything and plus I get free car service to and from any doctors appts., does not have to be cancer related. So I am blessed and I know it. CDR only charges $20 a month as they are a non-profit, so every month by the time my rent is paid and I scan them my bills there is about $15 left every month which is the way it is supposed to work. Once I pass, whatever is left in there CDR gets to keep so I use practically all of it every month.
Unfortunately, Sloan does take Medicare patients but they only take those who buy an additional plan (as most people have to do bc Medicare hardly pays for anything). So because I have NYC medicaid, I cannot go there.
So this year, we are supposed to be getting a 10.5% cost of living increase so for me that is like an extra $300 a month and I will probably have to put like $250 of it into the trust so that I still qualify.
I thank God that this cancer center had social workers, people that applied for me to get SSDI, attorneys that come there every Friday. Unfortunately, due to Covid, the people that helped me the most no longer work there and there are new faces but I am set up so I am happy about that.
Dear KearnanOf course you are anxious and feeling so alone. My heart goes out to you.. LOTS.
I will try to answer your questions and together here hopefully we can find some resources to help answer your hard facts questions, and find some respite from your anxiety.
First, I would not rely on your friends from Florida. They do not sound as if they can be responsive. Other advocates would be more reliable.
To talk day or night to an informed person I have used the American Cancer Hotline. They have e-mailed me the facts about my cancer and have talked to me kindly and accurately. You can also call them when you are anxious. I do hope they can be there for you.
Their number is : Cancer Helpline
Contact Phone Image800.227.2345
Second is to ask your oncologist (especially if she is in a hospital setting) to speak to a social worker who deals in end of life issues.
Third: I phoned Hospice and got someone to sit down with me and work out a lot of things like Directives and such. They might be able to provide you with both practical assistance and companionship too. I think it would be helpful to sit and talk with a Hospice Worker because they are the best able to answer your questions about what it will be like, and can be a chosen family for you now and when your time comes.
If you live in New York State then their is this organization. I do not live in NYS so I do not know how helpful they are.. endoflifechoicesny.org/
I hope these places to research, help . I hope that you will feel that you have not only found answers but the deep support that all of us need and deserve.. I hope you feel that you have found the someone (s) to be there now to hold your hand and in the days to come.
May you feel and find deep kindness in your process
And the reason I am on this message board is because of all those, like you, who write and have aided me beyond measure.We all contribute and build upon each other's responses. I am grateful for all who have sent care with any words they do.
hi Mary. just a quick fyi that USIrishColleen sent us both a reply but was sent to my name so not sure if you saw/read. just wanted to make sure I 'delivered the mail' to you properly...lol.
Carol, Thank you for letting me know. How do I access that Message? Is it on a particular place ? I am laughing at myself navigating (or attempting to) tech.
good morning Mary. I am not a tech wizard either😉. I probably worded it unclearly. the 'reply' Colleen sent to us is located within this thread....it is right below my 'long' reply to kearnan....just scroll down. the first line says 'kokopelli2017 and Mary115,'
I am in palliative care while going through this. My palliative care doctor basically writes my pain meds. She was in hospice for 10 years before coming to my cancer center and then Covid hit six months later so now she is 1/2 hospital (located several avenues away).
Thank you for your kind reply. I have had a palliative care doctor for two years. Once it spread to my spine and the pain got bad, my onco referred me to palliative care which is in the same cancer center. My palliative care doctor (I call her my pain doctor bc she is one who writes my fentanyl pain patches prescriptions and oxycodone).
Dr. E (my pain doctor) worked in hospice for 10 years before coming to my cancer center in palliative care. She was only with the cancer center for six months when I was referred to her. Then Covid hit and they took her out of the cancer center and sent her to work in the hospital (all affiliated but different locations).
She was the one who went through the DNR with me and told me to keep it somewhere where if they had to get in, they could see it. So I have had it on the back of my front door to my apt. for about two years now. LOL.....
My super, the doorman and porters know where it is. She also is going to call the social worker to get me one of those alert things bc she said if I was having problems breathing, I may not be able to call for an ambulance myself. So now, it is getting serious and she knows it.
My cancer center believes in referring cancer patients with advanced cancer to the palliative care BEFORE it is really necessary. They also have a nutritionist and a psychiatrist, both of which I passed on.
I would definitely talk to another doc. If you are being told these new tumors "may be" treatment resistant then you need to find out what the makeup of the new tumors is. It sounds like you need a new biopsy and it should be analyzed to determine what has made the tumors treatment resistant. There are so many treatments... now even if the cancer has become triple negative or her-low... new treatments! Do not give up! --Trish
Well, I am at the point where the side effects from the meds make me depressed and I spend way way too much time in my apt. Hard if you do not drive and have nobody in Brooklyn that does and I live in a primarily residential area so even getting to the store is a hassle but I call this same car service and they take me and wait (20 minutes) and then take me home.
It is funny though bc if I take too long, the price goes up substantially so I feel like I am on a game show, I go running up and down the aisles throwing stuff into my wagon like a madwoman. LOL
at this point in time, you have zero faith in your oncologist and for good reason. your mind will not ease without a second opinion. many here have given you good advice on how to obtain a 2nd opinion and even where to go.....Tammycross (Chris) mentioned MSK and Mt. Sinai as being in the top ten breast cancer centers in US and both located in NYC.
you are so overwhelmed and I get it. but you need to break your 'to do' list into 'sections' based on priority and work on the list one section at a time. otherwise, you are going to keep spinning in circles and will only get more frustrated and overwhelmed.
your first priority is to find a doctor for 2nd opinion. you will feel so much better emotionally if you get that 2nd opinion. call MSK and Mt. Sinai on Monday and see if they take your insurance. and if so, then make an appointment and tell them it is for a second opinion. patients do it all the time. they will accept you even with advanced disease.....they absolutely will. your only hold up is your insurance and that is easily answered by calling.
as for cleaning out your apartment and your life insurance policy......put that as low priority... just for now. please just focus on the 2nd opinion for now. once you know who your new oncologist will be and you get settled into your new treatment plan...then you can turn your attention back to your personal issues of who will clean out your apartment but for now, that can wait.
so that is my advice. prioritize. get 2nd opinion first. worry about who will clean out your apartment second. does that sound reasonable to you?
my heart goes out to you. you have many legitimate worries. I really liked the advice from Mary115 and the contact numbers she gave you for people to speak to. and I especially like Mary's advice to call hospice directly and make an appt to sit down, in person...face to face. would be so helpful in knowing what will happen 'at the end'. fear of the unknown is the worst. this is what hospice does. let them help you. I would put that as a top priority as well. and you do not need to worry where your body will go after death, hospice will make sure you go to research if your body is accepted, and if not accepted, they will make sure you go to the appropriate place.
I am solo as well. husband divorced me during treatment....that was difficult to comprehend. and yes, I have lost most friends. but I do have family support...two sisters. and yet I too feel alone at times, so I can only imagine how alone you must feel. so many here want to help you.
You both offer SO much good information and suggestions, delivered with such empathy. You two must be angels.
I too have been to ALL but one appointment by myself. My Mother (passed 2/24/2020) and my brother came to one of my first appointments after a scan, to get results, as well as learning the type, stage, of my cancer. I am one of six, but could not feel more alone. My whole family seems to be against me, over care for my parents later in their life. It is too complicated to explain quickly, and not to sound like Trump, but a lot of lies were told to my parents from my alcoholic sister. I moved in with my parents in 2008, after losing my condo to foreclosure. I am (and was single; never married) when the real estate market TANKED in 2008. I was a realtor.
I have been everything, aside from the “financial” behind my special needs niece, of who I am her primary caregiver and a co-conservator for her. I had to go to court because the others wanted to put her in a group home and sell the house that our parents have left to her. I am the least financially able to afford to care for her, however, the house is payed for and there is a minimal amount needed to stay in this house with her; HOA dues, water, utilities, cable) The others tried to get me to pay rent at the house where I have been involved with the care of my niece since 2008. The others were off living their lives and have NO idea how large of a part I play in my niece’s care.
I really believe that my Guillain-Barre’Syndrome and breast cancer were caused by all of the stress of trying to help my parents with my niece and deal with my alcoholic sister, Mother of my niece.
Kearnan, I can totally understand where you are at. Lately, I have been having all of those thoughts that you have mentioned about end of life. I have a feeling that I will die alone too. I also worry about who will take care of Annalisa. The thought of her in a group home makes me sad, and I KNOW that my parents would not have wanted her to be in a home. The siblings/trustees will not show the other three of us the “special needs” trust for my niece. I am certain my parents would not be wanting her to have to beg for money to buy some new shoes.
So, I have called the county mental health to request counseling. Our family used to be SO close growing up, but now that my parents have both passed, we are all doing our own thing. I am grateful to have a few VERY good, longtime friends, that reassure me that I am doing the right thing for my niece.
Sorry, if you all stayed with me through all of this. Kearnan s feelings are very much like mine these days.
hi Colleen. yes, Mary is an angel....such a kind, caring woman...and smart😇. boy, you have a lot going on. so sorry to hear all your worries on your niece. it's good to hear you are seeking mental health support....I too see a therapist and it really helps.
Colleen— so very sorry about your challenges. You are so brave and kind to care for your niece when others are not. Doing the right thing is hard… and you are right stress has negatively contributed to your health conditions ( me too!). So happy you are true to yourself and try to care for you too.❤️
Thank you for your reply. I have been my niece’s primary caregiver, and my parents were the financial “bit.” She inherited the house, and my siblings, who have been raising their own families, have NO IDEA how much I helped my parents. NO, it was not easy and it was very stressful with my sister being drunk and high, 24/7. The people who really know me, know how I live my niece, Annalisa. I hope that someone “up there” is watching me with her.
There should have been legal papers prepared for your niece to avoid all this. One person who has the power of attorney to make decisions for her, etc. People do not think about these things until it is too late.
My friend has a two year older mentally disabled sister with the capacity of a 10 year old. She is 65 and lives in the same neighborhood as my friend with 5 other mentally challenged people and they have people that live in group home with them watch and help them. My friend gets her for all holidays, they go outings but a few years back after her mother died (and there were no other siblings) but she went to court, got to be her legal guardian. My friend's mother left a two family home but my friend won't sell it (they have tenants downstairs) and she met and married a man very late in life so they live in an apt.
Sad, but with many it is about the money. That is why people need to take a look at what they have and who they chose bc other family will then go to court. Sad.
My parents had a special needs trust for my niece but I have not seen it. It is referred to a couple times in my parents trust, but the trustees (a sister and two brothers) have not produced it. They were busy raising their kids and was unaware of exactly how much I did for my niece. A friend of mine says that it probably says, something to the effect, “X amount of money per month should be given to ‘whoever takes care of Annalisa.’ “ My sister told me that I was the only one benefiting from my parents home, because now the court has determined that my niece is able to say where she wants to live (in the home that her grandparents left her) and with who she wants to live with her. My siblings were trying to get me to pay rent!I did some research and have an idea of how much I could be being payed to be her caregiver. It IS all about $! I truly believe that I got Guillain-Barre” Syndrome from the stress that I was under living with my alcoholic sister.
You can get paid by Medicare/Medicaid bc you are aiding your niece. But you have to be certified in some light training program but they are encouraging that. But if your siblings are giving you a hard time now, they will probably just make it harder for you.
I have seen more friends' families dissolve and relationships between siblings come to an abrupt end when the last parent passes. Especially if they had not made a will.
People will argue about the stupidest things. My friend, Lala, is one of 8 from an Italian Family. Once the mother died, they fought about everything down to drinking glasses. None of them talk to each other and their mother was NOT rich at all. It has been 10 years and none of them talk to any other sibling. Their mother is probably looking down horrified.
Well if you niece decided she did not want to live there or wanted to live with somebody else, I would imagine if they sold the home, that your parents would also have listed you as getting a share. But I have seen instances where the parents were not getting along with one or two of their children at the time of their passing and never modified their will so they got nothing.
My palliative care doctor worked in hospice for 10 years before coming to the cancer center. She knows I have a scan on 8/23/, it will on my patient portal by 4 pm on 8/24, I meet with my onco on 8/25 and then Dr. Egan wants to speak to me on 8/26. I also told that I do NOT want to wind up at Maimonides Hospital. Personal reasons that I have experienced there. Maimonides Hospital is several avenues away from the breast cancer and cancer center. Maimonides also has a bldg. of surgeons to meet with and discuss if one needs surgery in a different location. They have a therapy building, and a spine injury center all in different locations in Brooklyn but all Maimonides.
I just dont know if I want to take meds that may be even harsher bc right now I do not feel l am living. The afinitor makes me so so nauseous, and in conjunction with the Tamifoxen my feet and ankles are so swollen. I am alone 25.7 and I do not drive and in this heat, I could not last long.
I just wish NYS had the die with dignity act. That would be my choice. Why would I go through the pain and indignity of wearing diapers, etc. It should be my choice to choose to die with dignity. I am angry that this choice is not mean.
I know that Sloan will not bc I have medicare and full NYC Medicaid (pooled trust). They will take someone who has Medicare but they have to have a supplemental plan that most people have to pay for on their own bc Medicare is useless. They do not accept NYC medicaid. I may try Mt. Sinai. My palliative care doctor and the NYLAG lawyer both told me I would probably be sent to Calvary in the Bronx. (I HAVE NEVER BEEN TO THE BRONX). They have one in Brooklyn but my palliative care doc (who was in hospice for 10 years before coming to the cancer center) said it only has 25 beds and is impossible to get into so I would be shipped to the Bronx. It won't matter bc nobody will be coming to visit anyway and yet it bothers me bc I do not want to go to the Bronx. Ridiculous I know but my thinking is all out of whack.
I could get an aide but I refuse bc my apt. is small and I have been living alone since I was 19 so I could not handle someone in my apt. for a few hours. I told her I would rather crawl to the kitchen to make soup than have somebody else do it for me.
and btw Kearnan. what I just wrote to you is what I had written to you in a PM (personal message) a couple days ago that I sent. but since you did not read, I got it to you this way instead😉. I made some edits to it to include Mary's research and great advice etc.
I agree with all the replies that you should focus on your medical issues and ask for a second opinion. I too have liver Mets and even after my onc changed my meds, my latest scan showed that the liver Mets increased in size and number. So my onc prescribed new meds (my 3rd line of treatment) and said there are a lot more down the line. To hear that was reassuring. So I ask you not to give up and ask another oncologist what options you have.
I have multiple lung and liver lesions as well as some bone lesions and add to that some brain lesions too. But I have learned not to let the thought of these buggers consume my mind. I say this because I have been battling with MBC going on 5 years now. But when I was newly diagnosed with MBC, I also was very anxious about scan results, tumor markers, etc. Through the years, I have learned to just let God and my oncologist deal with it. I reckoned if I can’t do anything about it maybe they can. I pray that they discover more oral meds for MBC.
May I ask what is considered small? I was under the impression since February that there was ONE tumor and that by my next CT scan (she never changed the verzenio and falsodex which I was stable on for a bit over three years. My liver was a completely new organ. She kept me on the same meds and in June they had INCREASED SIGNIFICANTLY. And from the bloodwork I have been getting every week, bc she said they could tell by my bloodwork, it does not look like it is working but she said that could be for other reasons (the nos. in my bloodwork). I said well I do not want to continue to take this medication that makes me so so tired, nauseous and very swollen feet and ankles. So I will take it until my scan bc now she is backing off the fact that the blood would tell, now it is well until you can then we will for sure.
Oh, yeah, besides the two tumors that grew, in June 2022 a baby tumor was found. I thought it was one tumor. I said several times...how did I not know this. Why when I referred to the tumor, you never corrected me. I was so annoyed. I probably this late in the game for me, probably not much.
I would prefer hospice at home but a nurse only comes four hours a day and then I would be alone and my palliative care doctor said that would not be reasonable for me.
I wonder if you could contact the palliative care team at the Bronx Hospice. They would be the best people in the world to give you advice and reassurance.
I want to try to get into the one in Brooklyn although Dr. Egan (palliative) told me it is very hard. They only have 25 beds and I think there is one or two in Staten Island. I do not want to go to the Bronx Calvary one. I read some reviews and were horrified and these people have family members that come and check on them.
Our hospice here also does pre end of life help with painkillers, anti nausea meds, counselling etc. I hope you get a good one. When my mum was dying of bowel cancer They had this lady that came and helped her put together the story of her life wpictures. She was really pleased with it and my son and nephews really liked it too. All the best, love to you.
That is what I am worried about. I have been on xanax (3 mgs. per day) for over 30 years. It was written for me long before it was even a controlled substance and came with refills. Plus, I am on fentanyl pain patch for two years, oxycodone for three years.
In my early 40s (when xanax was a controlled substance with no refills and no primary doctors would write it, only specialists), I went to two different medication withdrawal specialists and they put told me the same thing. I had been on it way too long and it would take me at least 5-10 years to wean me off it so it was better that I stayed on it.
Luckily, the NYC Medicaid primary doctor that I have now knows I have advanced cancer so for the past almost five years, I just call and he writes me for my ambien (that comes with refill) and gives me 120 1 mg. of xanax every month. God forbid if something happens to him, bc I would have a hard time. Even my onco said the primary doctor at the cancer center would not write that for me.
Every single night (even before cancer), I had a major problem with insomnia. I take (and my docs are aware of this) 2 1 mg. of xanax, 1 10 mg. of ambien, two 300 mgs. of gabapentin, two Bisacodyl tablets and three stool softeners (for the major opiod constipation) and on top of that 7, yes SEVEN Extra-strength Unisom gel caps at the highest dose.
Even with all of the above (that would knock some people on their butt immediately), it takes two hours for me to feel sleepy and I only get six hours of sleep per night.
Plus Medicaid covers the ambien but not the extra strength Unisom and at 7 a night, that is not cheap.
So I freak out worrying that I will go through a horrific withdrawal bc of all the meds and I am sure they will not give me all that.
I once read reviews on it and I was horrified so I never looked again. These reviews were from family members. I remember thinking OMG, if they do that when they know that the person has family members that will be coming to visit, I can only imagine the lack of care I would get when they realize nobody will ever be visiting. My mind is too focused on the dark side of things and I cannot bring myself out of it.
- i accept you have no one nearby to help/visit you. However you're not alone because this community are 'here' to listen whenever you need to talk.
- why are you worrying about clearing your apartment out when you've passed? My advice would be to leave that to whosoever owns the flat. Put that worry down.
- So that leads into the question , why are you leaving money to these people who you cannot rely on to fulfil your wishes? My advice would be to use the money to prepay for your funeral. Anything that is left perhaps donate to the hospice. If you do this you can put the worry about the funeral down too.
- As others have said, focus on your health. It sounds like the specific treatment you're on has failed to do its job on the liver. Advice others have given about a biopsy to determine what's 'driving' the cancer will lead to finding the right treatment to switch to. Two years ago my liver was full of mets. I switched treatments and they couldn't be seen on the next scan.
- Try talking to your consultant. .."I'd like to have a biopsy to find out whats driving these liver mets so I can switch to the best treatment". If he/she knows you are knowledgeable about the way forward, he/she may change their manner towards you. Worth a try.
- Believe that love is all around you. Because it is!
Agree 100% about the life insurance. We had the doctor sign some paperwork for my sister to get early pay out on her life insurance and we used that to pay for caregivers and funeral expenses. It was a blessing. Agree also about apartment clean out..just sold my dad's house and it is full of 50 years of "stuff" after spending weeks trying to clear it, the buyer said - "just walk away, I will take care of it when I clear the place out" - so I did - what a relief.
Dear Kearnan,I’m so sorry to hear of your situation and can imagine the fear you are feeling. Please be kind to yourself in allowing those feelings and see what you can do to address your concerns, step by step. You still have time and there are things you can do to address each of your concerns.
The suggestion by others to get a 2nd opinion at one of the excellent NY cancer centers is a great one - that may give you new treatment options. And as others have said Hospice can be a gold mine of wisdom and support starting now.
I would also suggest a high priority of getting yourself some mental health support. Most cancer centers have social workers and mental health counselors on staff or can recommend some who are experienced and compassionate in supporting cancer patients. I encourage you to start seeing a counselor weekly to provide you with ongoing emotional support. And the social worker will be able to help you access support from local organizations and programs whose mission is to help people like you.
You also might be able to find supportive networks through local religious or cultural organizations. Even if you don’t currently practice a religion, if you have some family connection to it they may welcome you. Culturally whatever your ancestral roots are, you can find a related organization in NYC ( I wondered if your name is of Irish origin? If so you could check out newyorkirishcenter.org/).
My main point is that it’s not too late for you to make new connections and find supportive networks who can be there for you in this challenging time. There are compassionate people out there and you just need to find them.
I had a talk with my palliative care doctor today. Of course from the bloodwork, it appears that the tamoxifen and afinitor are not working. It has been 7 weeks so now I am having a scan on August 23.
My palliative care doctor told me that if these meds are not working and they do not seem to have too much to offer (Oh, I found out I have two tumors, not one and a baby tumor) that I would have between 3 to 6 months.
I had no idea I had two tumors. I thought it was one but according to whatever they look for, it appears it is not working.
I have to wrap my mind around this. If I have only 3-6 months (and I am not even sure if they are counting from when I started these meds if not working), I do not have much time left.
I had a weird upbringing. My mother died at 26 when she was 7 months pregnant. My father's family had no idea about me or ever met my mother. She called his mother from the hospital and said she gave birth to me and Jerry had promised to marry her. My grandmother, a strict Irish Catholic women with six boys and one girl (two husbands) and basically she raised me. Then she died a year later and I was went to live with her brother, his wife, and their two children. Not the best years but could have been worse.
Anyway, Nobody ever claimed my mother's body so catholic charity buried her with the baby in Harts field I believe. So it was all my paternal family. I know nothing about my mother, was never even shown a picture and could not understand why someone would let a 25 year woman with her 7 month old son die in the hospital and nobody claim their bodies.
Then two years ago, a friend gave me a DNA kit. I knew I had a maternal 1/2 brother two years older than me and I found that out when I was 17 and found the locked boxed that had information about me.
Well, Never ever give that to anybody as a gift. The whole family I knew and extended were not even my biological family. Jerome Kearns was NOT my biological father which explains why he never came to see me, even when living with his mother. He must have known or felt I was not his. I see he put in for a marriage cert. in Brooklyn to marry another woman, and then six months later put a marriage license in Manhattan and married my mother. That is why he had no affect towards me. No birth control then, no DNA kits.
My mother apparently had a brief fling with a man who had gotten divorced and had three children. He was my father. I doubt he ever knew. I think my mother looked at the situation and thought my father was a better choice (my fake father on my birth certificate which was revised at 10 days to put his name), he had a decent job, no kids, never married and had a extended large family as he was the last one born.
That was devastating to learn. I was hoping to find sisters of my mother, cousins, anything. Found nothing. Except the maternal 1/2, who without knowing anything of my short four years with her and how we lived and what we went through and all he could is complain that she must have loved me more. He was adopted at 3 months from NY Foundling Hospital.
I just could not deal with my cancer and this man who seemed to want us to have an instant connection and I did not feel it.
So my real biological father had 3 children so they are my half siblings. The middle one Keith has Richard, Cassandra and Jason and Richard and Cassandra came up as half niece. It made no sense until a search angel helped me. I wish I never did it.
There was no bond on the father's side either. Siblings are based on experiences, memories,...they are strangers to me.
Not sure where you are treated. If MSK, they have an oncology psychiatric team that you should ask to be connected with. I knew the woman who pioneered this area and it makes such sense. A friend used it. Also, there is an excellent care center for hospice that a friend used. I can look it up for youm Her mom had used them as well. Super caring. As for the apt, I agree the building can handle this. Where are you on your lease?
This is what is considered a luxury coop building. I have lived here for about 28 years. My LL lives on another floor in a corner much bigger apartment. They have very strict rules, when you come move in and move, have to shut down the elevators and it was to be a moving company that has insurance and the mgmt. company that oversees this building has to approve it. I can't just have friends help me move stuff out.
My ll and I have not spoke for about 8 years. I was a yearly lease when I moved in. Had to do financials on me, background check, and an interviews with the board.
My LL does not want to fix anything. She feels that since I have lived here for so long, I should be paying to have the whole apt painted (when I had a lease that said subtentants were to have their apts painted every three years. When something has to be fixed, she gives the porter $25, he does a crappy job, using old opened paint and the ceiling and paint are falling off the next day.
I not spending a penny on her apt. This coop buildings also provides 24 hour doorman, service, has a large pool in the back with gates that are like a little private park area with tables to eat (no eating around the pool). I never used it. Very cliquey.
Now, I am month to month so that works better for me. It is the isolation, and not driving and I cannot travel in this heat, I would pass it. It is a far walk to the train above ground and three levels and 95 steps in all and by the time I make it to the end of my long block to catch the bus, I have to sit down several times to catch my breath.
Dear Kearnan. You wrote that the correct treatment is not working. As the others have written, there certainly are other treatments and perhaps one can be found that is the effective one for you. Fulvestrant has worked to reduce the cancers in my liver. Then, as noted all over this place, I was privileged to have microwave ablations. I am recovering nicely. Please take heart. You can do this!
I had been on verzenio and falsodex injections for over 3 and 1/2 years. I was taken off it not in February when they found the tumors but in June when she saw that the tumors had increased significantly so as I was told "I had a good run on it."
Kearnan don't let yourself be overwhelmed by the idea of going to another location for opinion and treatment. Call any other good NYC hospital immediately and explain the situation of being kept on the same meds after liver mets showed and now they are much larger you and that you would like a second opinion ASAP. Avoid blaming the doctor to them as it might make them see you as a "possibly difficult patient" and put them off doing their best to help you quickly. Simply state the facts to see if you can get seen to quickly. I would try several places. If they ask for all your medical records upfront explain that you are alone and don't know how to do it. Ask if someone is available to help you through this process, or if you can see the doctor with the records you already have in your possession.Create a list of hospitals to call. Work your way through them. This is your priority.
As soon as you have some success with starting this also call your existing hospital and request an appointment with a social worker asap. You might have to do this via your oncologists office but no problem at all! Call them and insist they do this for you asap as you need help. The social worker should be able to give you the support you need to plan your other things, or connect you to the appropriate people.
Another great resource to call for emotional help and general guidance for navigating these processes is cancercare.org (NYC based) They also have hotlines to call who can connect you with volunteers, social workers etc (all free I believe). Do NOT give up! You are not at all at the end of your options yet, you need the right care to direct you to other alternatives
I am overwhelmed even trying to get food into my apt. I usually have to take car service, have them wait and buy soup, fruits, etc. But the past few days bc of my stress and fear, I basically have been laying in bed or waiting NDEs experiences or what hospice will be like. It is hard when you have no family, actually nobody. I never once had someone come with me since my diagnosis which is just now about five years.
I had purchased a small guaranteed life insurance for $7,000 and a friend who lives in FL (and is retired with her husband and they have no children) first had said yes a year ago. Now, I think they are not to keen on coming here to clean things out.
I have to try and call and start making payments on my own direct cremation so my friends will not be here when I am dying, they will come later. Now, they are telling me it could be two weeks after I am deceased depending when it happens.
Kind of makes one feel crappy but it is what it is. I always worked and had insurance. Thank God it dawned on me I had no insurance two years into this so I was able to buy a guaranteed one for $7,000 and I passed the two year mark in Feb. so it will pay out.
but now I have to see about planning for some place to pick me up and the cheapest is a direct cremation (which still costs about $1,500) bc they dont provide an urn and nobody will be wanting my ashes.
So all she would have to do is (as on my health care proxy) is that they will call her when deceased, and she just has to call the funeral parlor that I have to provide so that they will take me and that is that.
And I hope that her and her husband will still come here to clean out my apt. but I heard him once when i was on hold (or so she thought) that he said We could just have you brother go and split the money with him.
So that bothers me.
Sorry, I just really needed to vent. One friend just refuses to discuss my cancer bc she lost her best friend to it last year and the others started disappearing. Once you stop working, you lose your social connections to people. Plus, I do not have drive...
SOrry just moaning and groaning. Maybe I will see if the super will clear out my apt. (it is a coop building and they have strict rules about moving) and leave him the $7,000.
I stopped eating a few weeks ago and I am NOT skinny. Thanks for letting me rant and rave.
I can make an appt. or call the social worker. The lady that was there when I started had 30 years of experience,knew people to get help, was a godsend. Was very gruff but with a heart of gold. She retired during Covid and so did the other social worker. They have two very young social workers. I do not do the therapy thing. I had to go as a child bc of some quick abandonment and loss. They but you to bed in one place and you wake up someone else house in a different bed. You become immune to it.
Your life story is very sad and now you can find a social worker and the wonderful people at Hospice to help you have some days with companionship. It is never too late to create a family.. the grief may not go away over the loss, but kind care and connection can provide some good moments now. I am glad to read that you will find a social worker to help you. I am sorry that you have cancer and that you do not have a family to be by your side. It is sooo hard to move to get food or basic care when one is despondent. Taking the one step to find a social worker is a big step right now, and I am relieved to read that you are taking it.. then you can follow the excellent advice that you are getting here... May you feel the concern and care that people are writing to you, and
May you feel the strength to contact the Social Worker and Hospice..
I know it's hard when someone we like leaves, and I'm sorry to hear you had those issues thrown at you as a child too. Know that not all therapy is the same though. Some are not so good at it, or don't jive with us, and we need to have the patience to keep searching to find the right fit. I understand how you feel like the young new workers are too lacking in life experience but you don't know what they've experienced in their lives either. Maybe they had early loss too and will relate to your situation so it's worth giving it a try with them. If that doesn't work out I really encourage you to try one of the support non-profits as recommended to you. Many of them have people you can talk to on the phone They ask you enough to line you up with a better fit, or you could request an older person, etc. Don't even think it as therapy - just someone to talk to who can help you get perspective on your priorities and possibly connect you with resources so you can get more control over how things are arranged and more to your liking. That's what they are there for - not just "therapy". Be open to exploring these avenues of assistance for yourself and keep us posted how things go
Hi Kearnan, I’m sorry you’re going through tough times alone. I think we’re all alone even if we have support from family and friends. Only ladies who are in the same situation could fully relate. You received a lot of very helpful advises. Obtaining 2nd opinion, getting physiatric help, prepaying your funeral with insurance money.
I want to add that if you’re not comfortable with your oncologist, please switch! The good oncologist should provide the answer to your questions, so you don’t have to wonder when. In the meantime try to get your burden off your shoulders and live the best live you can.
I agree get a second opinion and switch oncologist. Let them know why you are changing; they might now care but you can at the least educate them on what it means to care about their patients.
I am going into my fifth year and I think the final phases for me. I can't imagine what another doctor can do. I do not want to feel sick but be alive living myself in this studio. I have lived alone so long that I am even stressed of having to stay at the hospital one night. I will see what the CT scan says.
The only good thing *but if these meds are showing that the cancer in my liver appears to be spreading and not slowing down" so that is why she is moving my scan up. I said I better not have to take these meds and then find out in September that the tumors tripled in size if they are not working.
I personally am not where you are yet.....but I can tell you about a very dear friend and what she went through. She was diagnosed with BC, had chemo, and was told she was clear. Two years later she had a stroke and was later diagnosed with MBC. It had spread to most of her internal organs. She tried a few treatments to no avail. She lived a very good life for one year, with no cancer treatments, just treatments to keep her comfortable. As a matter of fact, she was at a Halloween party she had at her home and was up and enjoying the party, laughing and smiling, and except for sitting here and there to rest, one would not have known she would pass in mid-December. Now, after saying all this, everyone is different!! Resistance to one set of medications does not confer resistance to the many more that are out there!! All of our bodies are different and you may find, and I hope and pray that you do, that you find another medication and are given a lot more time, time to make new friends, time to enjoy the fresh clean scent of the air after a good rain, time to see more glowing orange and red and pink sunsets and sunrises! Do whatever you can muster to make some friends if you can, don't worry about your apartment and cleaning up your life. Make friends with the nurses who help take care of you. My daughter is an RN and she has come to love and respect, and actually has called many of her patients at their home to keep in touch, check in on them and just say hello. Try to live in the moment, and enjoy it, because it's all any of us have. No one has forever on this earth....even healthy people. No one knows what the next minute brings, but we do have the present moment and all we can do is live and make the most of right now. Believe me, I think about the end more than I should, but then I remind myself, if I live in tomorrow I will not have lived today and today is truly all I have.
Many counties, cities and states have help for people who are ill and the elderly for companionship and care. If you check the websites of your local area maybe you can find some help so as not to be lonely. Check with your medical facility and local as hospital as well for help with companionship. If you don't belong to a church, maybe reach out to your local churches, many churches will offer help and companionship without any expectation of recruiting you or making you attend their church. Please take care, please try to throw caution to the wind, even a little bit, and take what you have in this moment and enjoy it and let tomorrow fall away. Tomorrow will come regardless of how we live today, so whether it's eating something delicious and enjoying each bite and morsel, talking to a stranger in the hope of finding a friend, seeing the beautiful colors of flowers and enjoying their scent, or anything wondrous and wonderful, find your joy if you can....and some day I know I will look back through these old posts and hopefully be able to take my own advice. Take care, and big hugs from my heart to you.
They seem to be preparing me for the fact that if the scan shows what they suspect, that it would be time for me to stop treatment and from their experience (my onco and my palliative care doctor who had worked in hospice care for over 10 years before moving out to the cancer center I go to I would have between 3-6 months. It is already in lungs and spine. I just can't stop shaking. I have nobody and right now, I can barely take a shower without crying.
Funny though people who do not understand MBC (some people in my building) will tell me I am looking great and am I in remission. I just get tired of explaining. People think you have to look really sick to be very sick, but we know that is not true.
It is very hard to explain why we look so well, while our bodies are failing and slowly dying. I know that people who do not understand mean well, but I get terribly aggravated with the few that insist on arguing with me that “I will get better and be fine”. I’m here for you, really! If you ever want to chat or write, or vent, or need a shoulder, I am here for you, send me a message, I will reply. In the meantime I am holding hope for you, for more time and quality time at that. You are in my heart and thoughts, my prayers if you will accept them. Take care dear fighter!
I did watch some videos of photos taken the day before women and some men passed from cancer and they looked perfectly normal at home, watching the TV. If you looked at me, you would have no idea that I was sick.
Hold on to that, because maybe a little more time, or maybe quality time is still ahead of you. Faith and hope go hand in hand and little of both can make life better, regardless of how much time is left.
I really would like to have hospice here among my stuff. But my friend's mother who had cancer they took her to their home and in their finished basement put in a hospital bed. She said the nurse was a godsend bc her three kids were small, but that it got to a point where her mother was mainly sleeping and never wanted to eat and one day my friend woke up and went down to check and her mother was screaming and was delirious and my friend got scared, called an ambulance and called her two siblings to get there asap.
My friend said her mother could not live alone even if she got a hospice nurse four times a day. Lisa had to change her, move her. I won't have that.
Unfortunately no one knows what our end will look like, cancer, or not. It’s good to prepare as much as possible for the end….and that is wise. At the same time I think it’s important to remember to live while we are still alive. Life is very complicated, and can be so all the way to it’s end., yet it’s still beautiful I hope with all my heart that you can find the answers you need, to give you peace of mind, that is something I think we all seek. It’s scary, I know, the unknown is just too much to process. Can the people at hospice help you find some resources or help you find ways to make your time preparing as comforting as possible? This is a time in our lives where the need to feel comfortable and safe means the most. I’m sending good thoughts your way, and I am thinking of you. Take good care, time is precious no matter the length.
I deliberated about posting and chose to wait and am glad I did. The ladies here have given fantastic advice and suggestions. I pray you seriously consider each and every one of them. You do have friends - all of us - take heart ! There is not one of us at all who haven’t gone through the fear factor of facing our mortality. It’s a by product of MBC and it’s real. The trick is how you approach it. If your mind goes south they body will indeed follow. Your mind is very powerful and has the ability to heal or crush you even further. Guard your heart and mind and stay focused on anything positive every day. If you believe in God, grasp Him firmly and pray and talk to Him. He is close by. I know that first hand when I almost died in the hospital when both my lungs filled with fluid and I was gasping for breath. They wanted to intubate me and I refused. I was on an iron lung and lost my right one. I’m here today because of my faith and the Lord himself who visited me in very dark hours. You have a purpose on this earth. Find it !
Regarding your supposed “friend” in Florida. Forgive my harshness, but screw that. I don’t consider a friend who is too busy to take a trip from Florida to be with you. There are no excuses and the pandemic doesn’t prevent it. If it’s money that holds them back, a simple plane ticket is cheap up and down the coast, so I don’t buy the excuse. Use you life insurance policy to meet with a social worker or hospice and get a trust with someone - and they have individuals - that will take care of your affairs, apartment and all, with the 7k. List things you want to donate and such. Give the rest of what’s left to a charity. I wound count on your “friend” to fly up to clean up your your apartment. If seeing you is too much of a hassle, cleaning up certainly will be even more so.
My first priority is what everyone has shared. YOU. It’s all about YOU right now - your treatment, a new onc, your mental well being and your peace of mind. Be selfish and ruthless in your healing journey. If and when you depart from this earth, do so knowing you battled to the end and did so with dignity and strength. We all and I mean all of us are entitled to pity party. Everyone has. It’s human nature. Now snap out of it and goes up your loins sista !!!
I know that eventually this would be the outcome but when you are that close, suddenly it becomes so so real. I am angry that in NYS we do not have the die with dignity act. So I will have to endure not being able to breathe, being put in the hospital where once they determine there is nothing they can do be sent to hospice. In the Bronx. I do not even think I have ever even been there.Just scared bc I am truly alone and nobody will be visiting me in hospital. I do not know what to expect, if I will just wake up and being unable to breathe.
My palliative care doctor told me when somebody calls the ambulance for me...(and I am thinking there will be NOBODY but me) what to expect.
As it is now, I am eating like an apple a day, sometimes a banana. I have no appetite. But I do not feel really sick.
I do not know if I am going to wake up suffocating or what. If we had the die with dignity act, I could take care of my business, and then go and have it done.
I hate that I am being forced to endure what lies ahead (including losing control of my bowels). I should NOT have to go through this. I wish I had lived in NJ or another state that has that.
First, you need a new oncologist. Mine in NJ always makes it a point to uplift me. She said if a drug stops working she has lots more to give me. I constantly worry about the spreading as well. Don’t give up. Your worry about being alone is so understandable. Does the hospital offer support groups at the cancer center? It’s a terrifying time in our lives. Reach out for support but do some research and check reviews on doctors in your area also. I drop doctors all the time if they are not giving me compassion or good bedside manners because that is important to any illness especially ours.
Getting out of bed, taking a shower and dressing exhausts me. Plus the heat in NYC right now is horrific with like 100 degree humidity. i have an inhaler so its in my lungs plus it stayed in my spine, radiation shrunk it a little because it was too close to my spinal cord and a good chance of being paralyzed.
Can. you speak with your cancer center "social" worker to assist you. I learned of palliative care. I don't know much about it. I read about it. Tell your oncologist about your concerns and ask for a referral to therapist, etc. Tell them you have no help at home. Does your health insurance have benefits for therapy etc. Your concerns are reality for many of us. Continue to express yourself here. That is why we are here for each other.
I have been in palliative care now for two years. As a matter of fact she called me today. I cannot have hospice at home bc I have no family at all and no friends even live in NY plus they have their own families, lives. So she told me that it would not really be feasible for me to have it at my rented apartment bc there would be no one here.
Kearnan during all of this stupid cancer life, I learned : how to say NO, what SELF CARE really means, be careful who I call FRIENDS, FAMILY can be disappointing, TAKE ONE DAY AT A TIME; CRY if I feel like it -- it is ok to feel lousy; LAUGH! DANCE! SING LOUD! This is your journey. Oh and get to a new oncologist team! Be strong my MBC Chic!
No, it's over. I am so average. I got diagnosed at 57 (the average age) and read that most, not all, live for about five years after diagnosis. This is my fifth year so "Average Annie" is right on the dot. It is already in my lungs and spine. But Maimonides is supposed to be one of the best where I live but I had been told from the beginning that one day this would occur and no medications would stop the cancer from spreading and that it is then many women stop and enjoy the rest of their time.
I can't even do that. I do not even have somebody to clean out my apt. (and I hate the thought of strangers going through my things, even though that seems ridiculous.) I have lived on my own since I was 19.
The thought of laying in a hospital or hospice bed and unable to clean myself or whatever makes me angry. Thank you though.
The family is not disappointing bc I have no family. Long story, but was raised by various paternal relatives and just about three years ago found out he was not even my birth father. I wish I had family bc even if angry, they will come together if one of them was sick.
Unlike my friends (who I rarely speak to) bc they will email and ask how I am doing and if I am truthful, I never hear back.
Plus, I am aware they all have kids and grandkids and some are taking care of their own elderly parents. I have two friends who live in Staten Island, but will not drive on highways, only in Staten Island.
I guess I am sick and tired of being sick and tired.
Dear Kearnan - you are not alone. Everyone is here for you and each other - many have provided very sound advice. A second opinion is first and foremost a priority . There are many lines of treatment- when one fails you try another. Are you ER/PR+ hormone positive?
I am in an MBC support group through my cancer center and there have been a number of women who are ER/PR+ that have had very good results in staying stable or reducing mets in their spine, bones, lungs, etc, through CDK4/6 inhibitor drugs (Ibrance, Verzenio, Kisquali) -a daily pill combined with Fulvestrant (aka Faslodex shot). A few have even reached NED status - no evidence of active disease! One lady is over 13 years metastatic.
Please don’t give up. There is ALWAYS Hope, Here’s another good resource for MBC - website is called SHARE and they have a MBC hotline 1-844-275-8427 as well as telephone/online support groups and other very good MBC resources including webinars and clinical trials.
I have done all that. The Ibrance and then 3 1/2 years of the Verzenio with falsodex injections which was stopped in June after the tumors they found in February increased significantly which meant the treatment I was on was no longer working. I just thought even once I knew, I would have more time.
Hi Kearnan- I’m so sorry you are facing these steps alone. I was going to suggest 2nd opinion and also utilizing the Social Worker at the clinic where you go. Both mentioned in other posts…. Just wanted to support you and offer what I can to let you know you are not alone. ❤️
The social worker is like 25 years old. They had a fantastic social worker who was gruff but she had worked there for 30 years. She was an angel for me when I arrived.
Unfortunately Covid, made her retire and the other social worker retire and the two new ones are sweet but young. She suggested I could make an appt. with the psychiatrist who could give me pills for depression. I laughed. I am on so much medication as it is now.
I am just angry that I do not have the legal option to die with dignity that some states have. I do not want to go through what I know lies ahead.
I can't begin to imagine how difficult it is to be dealing with this lousy rotten cancer without close family or friends support...my heart goes out to you. One thing I can tell you, though, is that I had my first meeting with a Palliative Care PA yesterday and I think she would be able to find resources for you so you could make plans, answer "what if" questions and find caring people to help you. I don't know how much difference there is between services in an urban center like NYC and the rural Midwestern area where I live, but I have arranged to have my body donated to the university medical school affiliated with the highly respected cancer center where I go for second opinions. Donating our bodies can mean no funeral home expenses and you can arrange for your ashes to be sent to family. or presumably to a cemetery where your ashes can be buried. The Palliative care folks hae probably had experience helping others who are alone. with resources for cleaning out your home. It's so much an issue of finding the right people for this.... I bet there are Non Profit groups that you could donate furniture etc to and they's sell it for funds for their work, But like others have said, it's probably more important for you to focus on your ongoing needs while you are living. Wish I were in NYC so I could come visit you! I hope you can get connected to the people who can help you with all this and I suspect the Palliative Care dept would be a good place to start.
I did that. I cannot believe someone else did the same. Columbia in NYC. I filled out all the forms, then had to have two people notarize my donor affidavit and then I had to have a notary notarize when I signed at the bottom. That is hard bc I do not get around much. Finally, the other day I received the packet (the donor affidavit original had to be mailed to them.)
I read the criteria over 10 times and then I saw it. They will refuse to take the body at the time of death, if one dies from an injection, or a communicable disease, or has open wounds or were stabbed or who committed suicide.
They would take it (no cost to anyone) but Alice since when she calls she has to mailed them a copy of my will (which is not filed with the court bc I have no estate).
Then I see they do not take emaciated or obese people. I looked on my chart and sure enough I am 40,1. I started out four years ago at 43.1 but that still makes me "morbidly obese", I would have to get under 30.0 to qualify and that is not going to happen. Other places too seem to have the same criteria. I got so stressed from all the paperwork and getting witnesses to finally getting relief with the package until I read at the time of death if a person is"obese", they will not accept it. As I am now, Morbidly obese. So once they find out that will not take the body.
And I am certainly not going to start an exercise problem to get under the obese level so that I can be donated. LOL
A couple of minor local comments. You talk about the Bronx as though it were the end of the earth and a place to be avoided, as you apparently have all your life! Like all NYC boroughs, there are many different neighborhoods and cultures in the Bronx. One of the best hospice programs in New York is in the Bronx. I hope that is the one your palliative care doc is talking about. It must be. I believe it is in Riverdale, which is a world apart in the Bronx. Kind of suburban, trees, open spaces, rutted little roads. Couldn't be nicer and the hospice program is, too. Very relaxed program, accommodating.
Second, a minor little fix. If you aren't up to getting a second opinion now, getting support, maybe finding other treatments, do one little thing: Meals on Wheels and/or Gods Love We Deliver. Not only will they bring you food, they will break your isolation, talk to you, check on you. It doesn't matter if you don't feel like eating, it is caring social contact. And maybe they will tempt your appetite.
First no, it is not Riverdale. It is Calvary. And second, you are twisting my thoughts of why I do NOT want to wind up in the Bronx on hospice at Calvary (disregarding of course, the horrible reviews left by family members). I know not one person that lives there. The people I know live in Staten Island primarily and Manhattan. I can have an aide, but I have a large but still L-shaped studio so I would have no privacy. Never even had a roommate. I can only take it day by day just wish NYS had that in place bc I would choose to die with dignity and on my terms, not being alone.
I am NOT talking choosing a vacation resort. I am saying I do want to do in a hospice that is located in an area I do not know, never lived in and know not one person.
I delivered meals on wheels when I was healthier a few times on Thanksgiving. It looked awful. Me and another man (No car), carting heavy wagons. Old people who were living by themselves. A few piece of turkey, cold potatoes, vegetables were cold, milk and juice. We were told we could not go in and chat with them as they would have liked. I found it sad.
Ugh, Calgary. I used VNS and then the Riverdale one (free on Medicare). No, that is not good.
I guess I fell for the hype on Meals on Wheels. Had heard of nice relationships, but they said not to talk to them? And the food sucks?
Okay, I take it all back.
I thought you didn't have people you were close to that would visit. Sounds like you do, but they wouldn't trek to the Bronx, not that you would want to be in Calgary anyway. You have no choice at all?
How about God's Love We Deliver instead of Meals on Wheels? I think they are all avoiding contact because of COVID and Monkey Pox.
I don't. The very few people that I know in Staten Island I no longer speak to. One was my next door neighbor, she lost a brother to cancer last year, then another sibling to a surprised massive heart attack, her sister died from an asthma attack and another brother died from alcoholism. Out out 8 siblings, only three left. She has had too much pain, plus her daughter got pregnant and now is living with them. Forget to mention that she herself had a heart attack, thank God she was okay, then she got breast cancer 2, chemo, mastectomy, radiation. She has had enough pain.
I do not speak to them and the two I speak to apparently were in Brooklyn and never asked me about stopping by.
If i was in hospice and about to die, MAYBE then one of them would come. But they hear how overwhelmed I am about trying to get things grown out but how hard it is, and never off.
Well my palliative care doctor and the attorney from NYLAG (the attorney who helped me to the pooled trust fund) both asked what medical insurance I had and when I said full medicare and full NYC medicaid, both of them immediately said I would probably be sent to Calvary.
People I know are back to work so you lose touch. One live ins NYC but will not travel to brookyn bc of Covid. I do not blame her bc the heat is unbearable and never once IF they call, ask if they could be of help.
If true friends, they should be aware you need assistance (when you make it clear) and if they do not offer, so be it.
One friend I had not spoken to for years suddenly called me up to tell me she had kidney cancer but they out it out and she is cancer free.
I mentioned to her that I was a stage iv breast cancer patient (I thought she knew) and then I never heard from her again. She just called me (after almost five years) to tell me she had had cancer, but once I said I have it now, she never reached out.
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Just a thought
The Artist
One year journey 
Help?? 
