thanks so much to all of you for your thoughtful and caring replies. you are an amazing group of women, but i already knew that!
yesterday i gave an overview...a lengthy one at that...lol. today i will be more specific....
the deterioration of my spine is progressing rapidly the past couple months. i swear the only thing holding me up at all is that despite my failing spine, i have a very strong abdominal core (obviously my core back muscles not good). i use my core to compensate. but after 2 minutes, the back pain becomes unbearable and i must sit. well a strong core is helpful but it cannot replace the spine...not it's job.
i have spent much time and energy in seeking docs and procedures in trying to 'fix' this spine which is honestly unfixable. maybe a better word is to 'improve' my spine. i get my hopes up each time. and each time i am disappointed. this last attempt last month with the radio frequency ablation to kill off some of the pain nerves did me in. i was certain it would help with my mobility. it did not. this doc is both a spine and pain management specialist with a great reputation. he truly wants to help me. the other doc is a reputable spine surgeon. he performed a laminectomy but said nothing more he can do...that he is afraid my spine will crumble with aggressive surgery. i am doing this on my own without any outside help. just trying to advocate for myself. my onc provides the pain meds which is huge...but i am on my own with the mobility issue. i even purposefully lost weight so that my spine would have less of load. and i do stretching and core exercises every day. well, almost every day.
i am at a crossroad. i need practical help. my bedroom is a mess. my laundry is piling up. i haven't showered in several days...too difficult, too unsteady, and too painful...(humiliating to admit). i rarely leave the house. my room mate is helpful but cannot expect more than what is already being done, which is a lot, and i am thankful for that. and i spend way too much time alone.
bottom line, realistically my walking days are over...at least out of the house. i need to accept that. i am working on that...accepting what i cannot change. i just can't figure out how to make this transition on my own. i need to learn how to use a wheelchair. i need to accept that i can no longer shower on my own. but who would help me? i do not have much of a support group...my circle is small. and i am too depressed at the moment to figure this all out on my own. i have no care givers. i was always the care giver. i don't know how to be on the 'other side'. but i guess i need to learn. my daughters still look to me as their mom and i have promoted that. i do NOT want them bathing me. i can't afford to hire someone. i guess i could suck it up and ask my sister. not thrilled with that option but i need to learn how to ask. i have spent my life being 'the strong one' and have never really asked for help. it makes me so uncomfortable. but i know i must. i am not going to make it without help. it is time for me to accept that. not easy. but it is time to switch gears, as much as i hate to admit it. oh how the mighty have fallen (wink).
i don't know much about palliative care....i was an acute care nurse. my therapist mentioned it to me yesterday....that it might be helpful in providing some services. my onc mentioned it at my last visit 3 months ago, but i was not ready. but i am now! i thought it was pretty much like hospice but i am hearing it is not. is anyone here on palliative care? or know how you qualify? or what services they provide? perhaps it is a starting point? and of course i can google.
please know that i realize all of you are struggling and suffering as well. mbc is such a game-changer. my heart goes out to you all!!!
i promise that this will be my last 'long' post. you all are probably wishing by now that i had stayed 'undercover'....lol.
sending hugs to all....
carole xo
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Please never think that any of us wish you had stayed "under cover." I know that we are all so glad that you "came out" and shared your story. This group is a godsend and often has so many similar stories to share. God bless you, dear one!
thank you for that Linda. you made me feel so welcome. i am so happy to be a 'participating' member of this group of strong and caring and amazing women!
By the way, where do you live in California? I live in Seattle but have a condo near Santa Monica (mostly used by my son and his fiancee). LOL! Have a wonderful day! Linda
My heart goes out to you. I am so, so sorry to hear of your situation. Maybe not everyone knows this, but officially, all of us who are stage 4 (metastatic/terminal) are receiving palliative treatment (as opposed to curative treatment). I am on Ibrance + Letrozole and this combo is considered palliative care. If you are in need of bathing care and are wheelchair bound and cannot harness family or community resources for care, you probably need to place yourself in a long-term nursing home or facility, one way or another. If you can't pay for it, in the US, one main strategy is to figure out how to be admitted to the hospital for at least three days because the hospital will be forced to discharge you to a nursing home. I think Medicare will pay for a certain number of days. Is it 100 days? After that, if you exhaust all your resources, in most states you will qualify for state support. Personally, I am already signed up for MAID for when the time comes. This is a very personal decision, but it makes me feel better to be in control. If you are at the point of being unsafe and needing basic care, call the cops on yourself and explain that you need care but have no resources and do not know what to do. I suppose they can hook you up with some sort of social worker or social services network to help you find immediate emergency care or transition support. I would for sure go on hospice as this will likely help your insurance company provide some resources and guidance, whether you stay at home or get yourself a hospice or nursing home placement. You can call your insurance company right now and request expedited hospice and support. You can also place a nighttime emergency call to your oncologist or primary care doctor and confess that you cannot bathe or care for yourself and don't know what to do.
hi Lynn. thanks so much for your thoughtful and supportive reply. and i can understand that it brings you comfort to have your plans in place with MAID. we all want that final control...or many of us anyways. i had to look it up as i had not heard that acronym before. so obviously you live in Canada. here in the US, that type of assisted death is only legal in certain states and maybe only approx 10 states have passed that type of legislation. at this point in time, MA is not one of them :(. hopefully more will follow in the near future! we treat animals better than humans when it comes to mercy deaths. i have no intention of living in a nursing home. it is the whole quality of life issue and i intend to die at home when the time comes. either naturally or Plan B (wink). but i so appreciate the advice....just not for me! i plan to call my onc tomorrow and see if i can get some help through them.thanks again for your compassionate reply!
Dear CaroleFirstly, I wanted to let you now thatI made it to church, yesterday and the prayers are now encircling you. I believe it will help. Secondly, I totally agree with you about staying at home in your own secure place and doing everything in your power to make sure it stays that way. One of the powers we MBCer have is that we have nothing to lose so it's bombs away! Perhaps your sister just needs to be informed of your need and will hurry to your side.
I have been thinking of you often over the last few weeks. What happened? Have you found some assistance to have a shower and get a little help with laundry and such? Have you found an assisted living place?
hi Lynn. you took me by surprise....how sweet of you to be thinking of me!!! i did post an update....called Update...lol...a couple weeks ago. the short version is that i did ask my sister and roommate for help and they both agreed....yay! my sister is helping me shower and wash hair and run errands. and my roommate, in lieu of reduced rent....is doing my laundry and the cooking and cleaning. it's a big rent decrease but worth it. i finally see my oncologist in two days and will be discussing palliative care and hoping to get some of these services for free?? i also applied for accelerated death benefit on my life insurance policy that i have paid into for years....fingers crossed that they come through for me....the extra cash would be so helpful. should hear back in a week or two. so i am on the right track.
i don't know why i was having such a difficult time asking for help...just not my nature i guess. but it was you all they gave me 'the push'! so thanks again to you and all the other amazing women that replied to my cry for help. and thank you again Lynn for reaching out today....means a lot.
Dear Carole, you are carrying a very heavy burden. Asking for help is not weakness, it's resolve: I was a journalist in my thirties and I remember being in very dangerous situations yet not wanting to "cause fuss". An army officer told me that half his troubles came from soldiers who didn't ask for help on time but tried to go it alone. If I were closer I'd give you that shower. We're all one here. X
Dearest Koko….. write away & write as much as you want… many readers on here are wanting to hear from you! Writing helps and we want to listen xI totally understand you not wanting your daughters to bath you - I have instructed mine as soon as my sh*te hits the fan send me to a hospice or whatever! Do not give me personal care - I do not want role reversal no matter how much you think you owe me or love me!
Please ask your daughters to help you find a hospice or some kind of care at least - that’s ok, that’s not too much! You don’t need to be in total control or this strong when you’re in pain trying to do the very basics for yourself. Sorry to sound bossy - you need help now, mentally strong people don’t like to admit this… I know, I’m one of them!
hi N. thanks for 'getting' that i do NOT want role reversal with my adult daughters. not now, not ever. i want to be remembered as their 'strong' mom, not that sick, deformed woman, that they had to bath. it is a visual that i do not want them to own. thank you for the words of support.hugs...
I am not sure where you are being treated, but I feel like calling your doctor could have them move in directions to aid you sooner. This is something cancer hospitals deal with all the time. Outsource to them to help with this. They will have a rolodex of options.
hi Carol. first let me thank you for your replies...much appreciated and very supportive. and blunt is fine with me! my onc mentioned palliative care 3 months ago at our last appointment and i declined. i was on a mission that day to go thru my scans and it wasn't on my mind. honestly, i have been in rough shape for a couple years now but this 'only being able to stand for 2 minutes or barely walk' thing is pretty new....it progressed pretty rapidly in the past two months. same with the shower....it has been difficult for a while but manageable. was not my favorite thing to do.....but i got thru it. now it has become almost impossible. same thing....just recently. long story short....you are right. my next appt is march 1st....3 weeks away. i should call in before that. i do have a small support group....my two sisters and my best friend. but the best friend works full time and lives over an hour away. the sister that could best help with showering etc lives 3 hours away. the sister that lives close by is good at laundry but not at bathing...lol. but i haven't asked for help. i plan to change that. i have no choice.
Yep, March 1st is forever from now! A call or a portal note to them ASAP will get them rolling and talking options.
While my case is not yours I had terrible neuropathy in my foot at night. Sleep was erratic and I would wake feeling exhausted. I wrote the pain people and they said...oh we are using Cymbalta for that. Now at that point an appt was a month away. Got that and have been having quality sleep. If I waited, would still feel like I was hit by a train every AM.
For humor, and there is always humor here, they asked if I had bad nightmares at my appt. I said no. Then the next night had a dream that my husband planted all red flowers, my least fave color, in the garden when I was out. Now I wonder, was that a nightmare?
Olay, so get your dr lining up options now so you can select what you need!
xCarol (without an e who was never asked the spelling til Carole King made the earth move under her feet)
HI Carole, I'm so sorry you are experiencing this pain and trauma. And I have to say, your bravery in sharing and your courage of recognizing and asking for help is incredible. Unfortunately, I don't know much about accessing palliative care in the states but I did find a national organisation that may be able to provide advice - nhpco.orgI am holding you in my heart. Stacy
Hi Carole. Palliative care for me is asking for what you need and then given resources and contacts of who can help. That's what they do. You're right, they are not hospice, but there to meet you where you're at and HELP. My cancer center has a palliative care team and they've helped me with whatever I needed. If you have access to palliative care, call them. It's a great place to start and hopefully they can give advice, resources and help. Good luck.
hi there. thanks so much for your very helpful reply. it's so great to hear your praise of your palliative care team. nice to hear they are helping you...yay! gives me some hope that mine will be equally helpful. and yes, my cancer hospital does have a palliative care program and i plan to contact my onc asap.carole xoxo
Carole, I am so very sorry that you are struggling so much. I can't imagine going through this on your own. Please don't ever feel that you cannot come to this group for advice and support. I think that your oncologist or maybe even your therapist could help you find the services you need, especially if they are both recommending it. You cannot do all of this on your own. I don't know if you have a local church, but sometimes they have access to care givers who might be able to help you as well. I hope you find the help that you need. In the meantime, please know that you will be in my thoughts and prayers. Sending hugs.
hi. thanks for the both sweet and helpful reply. i agree with you...i think my onc and therapist are my best bet in getting things moving. so glad i posted. i am feeling some mental relief. you all are so lovely and so supportive. so grateful for all the ideas.hugs....
Please post as much as you want as often as you want - we're here to listen. Asking for personal care is so hard. After I had back surgery in November, I pushed myself to do things so I wouldn't have to ask anyone to help me (I was glued to my grabber so every time I dropped something - which was all the dang time- I could pick it up. I learned how to put on pants with it and I even used it to do laundry). As for help - there's an organization called Cleaning For A Reason (cleaningforareason.org). They come out and clean your house for free. Also, have you contacted a home health agency? Am I right that you moved to Massachusetts? Check out thinkhomecare.org. They might be able to help. There are resources available, but not all are obvious. I can help you search if you'd like.
Wishing you all the best and sending warm, gentle hugs
thanks so much Susan for the offer to help....so sweet and helpful of you. i am so blessed to have received so many replies with such great advice....such an amazing group of women. i plan to call my oncologist tomorrow and will start from there....hugs,
I am so sorry to see you go through this. My story is very similar to yours. I had spine surgery in 2016 that changed my life as well but not in a good way. I can still walk short distances but not stand for more than 10 minutes. I shower on a bench and struggle with the gripper to get dressed. I am 57, so I have chosen not to give in yet, because I could have so many years ahead. I know the day will come. Although, I have a husband and a teenage son and daughter, they are over it, to some degree. I don't cook, clean much and only fold laundry. I do the grocery pick ups from my car. If I sit up too long my stomach muscles cramp. I am sure it is a strange way of life. My point is I get what you are going through and thank you for posting. I live on the panhandle of Florida, in a small town, and we don't have a cancer center. My doctors are amazing but no cancer hospital. You now have given me resources for my relatively near future. So, you thought you were simply asking for help but now you have give me a gift. I am fortunate that I do have my family but sometimes you can see it on their face. My mother is 80 and my sisters live 7 hours away. I am going to ramble a bit so jump to what you want to read. Back in the 90's my sister developed a very severe case of lupus at 19. The pain was so bad that she could not lift herself up off beds or out of tubs. My other sister and I did it for her. Wet people do not lift well being so slippery. It was so hard to watch her go through it but I found her a new doctor and over the next 5 years he tested her and refined her medicines. She is now 50 and helps me when we are together. I tell that story because I could not wait for her to ask for help. I went and got it for her. I too am going to have to advocate for myself. I rarely go places because of the sitting up and am trying to get the neurologists input since it started with the removal of the tumor crushing my spine while showing no tumor marker increases. Had I only known. I would still have MBC but maybe not pins, donor bone, cement and the kitchen sink thrown in to remove the damage the tumor caused for about 17 mos. pressing on my spine. The pain started in Sept. 2014 and I had spinal surgery in Jan 2016. My original diagnosis was 12/12/12, stage 2, highly curable ductal carinoma es+/pr+ breast cancer. Then, so you can have the full picture, that traveled from my left breast to my spine, MBC. In June 2019 I found a tumor in my right breast. Could it be the same BC? Nooooo. It was her-2 pos, es/pr neg. So the treatment for that was off Ibrance and letrozole and on to chemo for 4 months on one set of drugs and another 8 months on other. I got to take Ibrance, letrozole, perjeta and herceptcin for those 8 months. I won't even get into the side effects. I did lose 80 lbs. That did not help anything but my mind. So, again as you can see what I have been thru, your post gave me so much sadness but great joy. Please keep me posted on all that you do. I want to pray for you and check in with you and know what is working for you. I want to suck the knowledge out of you! By the way, I hate taking showers but I hate not taking showers and I don't want my kids doing it either. My son was just old enough to speak short sentences 2.5 to 3 and still showing with me. I am pretty modest so I can't believe I showered with him but he looked up to me and said mom, your boobs are ugly. Done. Showers ended. He is 18 and having him help me shower now would be a nightmare and slightly creepy. My husband would probably just dump a bucket of water over my head. Fortunately, my mother in law is a retired nurse and would look at me like any other patient. I am hoping to not go there for some time or get a walk in bath with a shower with a seat. You never know though when things will change so who knows when i will need it. By the way, everyone wants me to go to Disney and Universal in a wheel chair for the handicap treatment. I don't know what it is but just a thought. I am looking for a scooter that does have to be on a lift on the back of the car too. I saw some that were the size of a suitcase but not sure how heavy. I can live without speed. Hence titanium (spinal) support and walking so slow, turtle. I hope I can help you too!Andrea (sorry for so long).
hi Andrea. so saddened to hear your spine story as well. very difficult to lose your mobility and independence as you well know. and to add insult to injury, this loss of mobility impedes on your (ok, well mine for sure) ability to help other symptoms/side effects at the same time. i have extreme fatigue, another fun fact🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄, that could benefit from exercise i am sure...but unable to perform due to my disability🙄. not to mention exercise can be very beneficial for depression and anxiety...talking from experience. i literally 'ran' through my first 'bad' marriage!! running, yoga, ballet etc brought me JOY. this impaired mobility certainly is a hard pill to swallow. my heart goes out to you.
i handled the first 3 years of my mbc diagnosis pretty well....after the initial shock! it was two years ago when my quality of life spiraled downwards quickly. the spine went south...resulting in the impaired mobility, the ugly deformity, the loss of independence...and my self-identity took a hit. i hope you are coping better than me. fingers crossed.
with the encouragement of the amazing women here....i have learned to ask for help. my sister is now helping me shower and running errands and actually seems to like her assignment...lol. and in lieu of substantial rent reduction, my roommate is doing all the cooking, cleaning and laundry.
i know you are asking for some tips of what i have learned/researched as far as outside resources for help...but so far i have come up empty. it's okay for me right now since i have help at the moment. but i don't know how long my roommate will be with me...i'm honestly afraid to ask.
in speaking with the social worker at my cancer center, and via google, i have learned the following:
--you can only be enrolled in Hospice if two docs sign off that death is imminent within 6 months
--Palliative care is more of a 'concept' than an actual program....at least at my cancer center which is small compared to some. they provide spiritual/psychosocial support but no real services.
--Medicare does not cover home health aides....unless you have been recently hospitalized and are discharged with a visiting nurse and even then it is for a short period of time.
--Medicaid (and i think SSI) does provide services but you have to have very low income and NO assets
--long-term care insurance is helpful but i do not have that type of insurance.
--most people with home health aides 'pay out of pocket' which i cannot afford. i am divorced and my only source of income is disability SSDI. i do have some savings (IRA) but need to budget carefully...have rent and bills to pay. and when that money is gone??? and of course i don't know how long i need to budget for? this mbc is such a game changer full of uncertainties.
i just started searching and maybe there is more out there than i have looked into. i am sorry to not have more uplifting info to share. i will say in the US, it is appears you either have to have zero money or lots of money to pay for home health services. but if low to middle-class.....there is not much out there?? please do not hold me to any of this....just sharing what i have learned so far. but perhaps my intel is wrong and/or maybe i have not dug deep enough?? wish i could have been more help to you!
thanks for reaching out. and wishing you the best you can be!
oh yah, and i forgot. i am still working on receiving an accelerated death benefit from my 15yr old term life insurance policy. it is taking longer than i had expected. if i do qualify, i will put that money aside for home health care going forward. fingers doubled crossed on that one😉
Carole, I am fortunate that my husband has a good job and we can afford many things. He works for a large, 300k plus company so his benefits are fairly good. I worked full-time for 20 years as well. I looked at home health when I got my surgery thinking we had good insurance. No, not good enough. It was so expensive. Like you, I have a 401k/IRA but you are right with this disease you really can't plan. My mother in law was a home health nurse and before she retired so she knows the drill. I would owe her then though and I don't want to go there. I do have 3 sisters but I would need to move near them. My children will be in college soon so that is not out of the question. I live near the beach now but it is too hard to navigate. They put one handicap pad for wheelchairs at a beach 45 minutes away ao maybe one day I will get there. I thank you for your information. I am now just starting to see if anything physical can help me.i can't wait to see the neurologist, good or bad. I have been very fortunate, my mets have not progressed in 6 years. I hate to always think about the day that changes but I am a realist too. I like the idea of those electric bikes. I may need to look into those. So many people bike around here. Anyway, keep me posted on your journey and I will do the same. Who knows what we may learn. I am hoping for the simple miracle of being able to walk the dogs around our circle, .33 miles and comfortably eating out. Not too much, right? Maybe eat by the beach? By the way I grew up in Central NY and 1 of my sisters and many relatives are still there. I never made it to Mass. Would love to one day if things change. It would be great to meet some ladies on here in person.
Carole, I’m so sorry to hear that you’re in pain and not able to care for yourself. I too took care of things and family. Now, I depend on my husband for everything. Never thought that it’d happen, but so grateful that he is for me 100%. It’s so difficult to loose your independence!
I suggest that you have a good talk with your oncologist to refer you to a palliative care specialist and to a social worker. Not sure where you live, but there are agencies that could assign a nursing aid to help with showering, personal care., laundry, etc. Number of hours per week will depend on your insurance.
Getting used to loosing independence is so hard, asking someone for help is near impossible. I hope that getting pain in control and personal care will make you feel better, both physically and emotionally.
hi. thank you so much for your very kind, empathetic and understanding reply. i noticed that understanding how difficult it is to loose your physical independence is from first hand recent experience. my heart goes out to you. i am so sorry that you are going through such a rough timel thank you for reaching out to me.
Don’t ever feel that you can’t open up on here. The spine thing is huge. That is my issue too. Not as bad as yours . I don’t know where you live but on Ontario, Canada you can get quite a bit of free home care. Like help to shower and light housekeeping and meals and that is not considered palliative.Hope this helps. Will keep you in my prayers.
hi Theresa. thanks for both of your replies....very kind of you! and pls know i am sorry to hear of your spine difficulties as well....such a challenge.hugs...
Carole, My heart also goes out to you. I have MBC so I know about that.
Please call HOSPICE; they will send someone to assess your need,
then provide a nurse who will order medications—pain meds are their expertise at Hospice—, social worker who will support you emotionally and sort out next steps, a chaplain if requested, AND an aide who will comes to you as often as recommended and can cook for you, do your laundry, clean up around you.
I had this care for both my late husband who dies 20 years ago; then 6 years ago we had 2 different hospices—one in Maine, then in Philadelphia area—for my brother. They were amazing. In 15 years they also improved enormously.
I have palliative care already even though my cancer is not progressing yet. They will also work with Hospice when it is time.
hi Joy. thanks for the kind reply and for sharing your own experience. i'm sorry to hear of both your husband's and brother's passing. it sounds like they had wonderful end-of-life care which is comforting i am sure. i definitely need to make some calls!
My sister had a palliative care team and it was wonderful. They had in-home OT/PT come to see her, they evaluated her, THEY ordered the walker and wheel chairs, they helped with toilet grab bars, ideas for chairs that were easier to get out of...They recommended when hospice should take over. The caregivers were not free and were very expensive. My sister arranged to have disability start and have her life insurance paid out early - the doc did the paperwork - and we used that for the caregivers and bills. It sounds morbid but it was a huge blessing.
hi Allison. thank you so much both of your replies! very kind of you! i'm happy to hear your sister had such a wonderful palliative care team and such a great experience with them. i'm a bit confused though as up until your response, mainly i have heard it was free? hmmm. but maybe you went through private agency. well, either way....i will be contacting the palliative care team at my cancer hospital asap to see what they have to offer. i can't afford to pay for services. my SSDI goes towards my rent. time will tell. but thanks so much for your caring!
We had a private company for caregivers and no insurance would cover it because they weren't RN's this is the crux of the matter and something someone should fight. Nurses don't typically want to sit all day and help with cooking, laundry, bathing and toileting nor clean the house. These ladies did all of that. We tried various combinations to limit the cost. In the end, we had them during the day and then my sister's sons and I covered nights. The company was very patient about payment thank goodness because every week when the credit company called my sister to authorize the charge, she would verbally deny it (Brain mets were the root of that) she felt that insurance would cover it and dug in but we were repeatedly denied because they were not RNs. ON a side note, everyone's journey is different and it has been a struggle for me and my husband to separate her disease with mine as they are 100% different.
Carole: Sister, and yesssss ,Warrior . This is coming from another strong women who also takes care of everybody, and doesn't know how to ask for help, my heart goes out to you . I know you like me are very private, but you birthed your children, fed them, cleaned their diapers, and gave them so much more :). I am sure you raised your children to be strong women. :). Please let them help you, until you can find an assisted living / palliative care placement. When I went through aggressive chemo I had to ask for help, even though my husband at the time was doing all of the physical things I needed, he was emotionally distant, and he was going through a deep depression. When I broke my arm in 5 places, while out rollerskating. I also had to ask for help from friends, and family This is when I realized I wasn't Wonder woman, and I was so grateful that GOD placed them in my life. At those times in life that's when you know true love. and I am still soooo grateful for everything they did for me, that I couldn't do for my self at those times . Please reach out to a social worker, and your daughters/loved ones. You can't receive the help you need if you don't ask for it. I do pray GOD will give you relief from the pain you are experiencing Amen! Carole, Sister, and yesssss Warrior I do send you many virtual hugs
hi RLN. thanks so much for both of your thoughtful replies. you are very kind! and of course you are right that i must learn to ask for help. i plan to start asap by calling my oncologist and go from there! you have been thru much yourself and i wish you the best!!
Carole, it is so hard to ask for help. I know. I struggled with that too, but, we have to accept that that is just the way it is.I have a palliative care doc who is wonderful. It is not hospice. She has helped me with side effects, nutrition and my neuropathy and carpal tunnel. Well worth getting palliative care.
You may be able through a referral to get a visiting nurse to help with bathing etc.
thanks again Marianne for your words of wisdom. i am working hard on 'acceptance of what i cannot change'. not easy but trying hard. and i now realize i must ask for help. i have no choice. my spine is deteriorating rapidly these past couple months....it's scary. i'm happy to hear you are finding palliative care so helpful. i plan to look into it asap!carole xo
Thank you so much for sharing and being vulnerable. You help us all, especially me, with your bravery and openness. I wish I could help you, but I am relying on help from others myself. You should 100% qualify for an aide to come and do light cleaning and bathing. 100%. The social services at the Cancer hospital can help organize this. Please call them ASAP.
hi RedAzalea. thanks for the very supportive reply. and yes, i plan to call my oncologist asap as you stated. i am sorry to hear you are struggling and need help as well. you are way too young to be going through this....my heart goes out to you!
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This is coming from another strong women who also takes care of everybody, and doesn't know how to ask for help, my heart goes out to you 
. I know you like me are very private, but you birthed your children, fed them, cleaned their diapers, and gave them so much more :). I am sure you raised your children to be strong women. :). Please let them help you, until you can find an assisted living / palliative care placement. When I went through aggressive chemo I had to ask for help, even though my husband at the time was doing all of the physical things I needed, he was emotionally distant, and he was going through a deep depression. When I broke my arm in 5 places, while out rollerskating. I also had to ask for help from friends, and family 
Curious to know....
thanks for all the advice
Looking for guidance, direction & support - Patient w/ 2nd Diagnosis of XXX Neg Breast Cancer & painful Lymphedema
Good-bye and thank you all
