Final journey

Dear Licha

I am so sorry to read your post. I wish you the very best for this new journey. Have you considered Hospice? My understanding is that hospice can help with pain management as well as help your loved ones to be of of assistance to you. 

My heart and thoughts are with you.

Susan

I have no suggestions for you

I have no suggestions for you about this fight.  I am only myself in the 'waiting' period, with something amiss... and I am a Hospice nurse. When you do quit treatment, I do recommend Hospice. There are Social Workers. There are chaplains, if you want them. There are nurses and drugs that will be in your home for your use for nausea and pain. On days you need help, folks will come and help get you in the shower, make the bed, and can get you a meal from your kitchen. You can make that a 'rest' day.  You can have that help when and if you want it.  I find it saves energy for other things....Someone I am reminded of though kept moving through her pain, (back), so as to keep her bowels moving. Things slow down when a tumor pushes against the bowel with resulting obstruction. For myself, should I have to make that choice about any 'below the belt' cancer, I will ask about an ostomy. Another's experience showed me that having / managing BM's is exhausing allowing no outings, not even a nice drive on a beautiful day with someone else driving. To me, that is the best quality of life...being outside on a nice day and just breathing it in...

There will be the nutrition question, and there are folks here with experience with that....Iso Pure I've been told, you can get that at GNC for liquid nutrition, I haven't tried it, what I understand is that it is utilized by bariatric patients, so there is something in there that can give you liquid nutrition and bowel rest. BM's will be difficult and I also understand that Senna S, a combo of senna and docusate, appears more effective combined than taking the two together.  I see folks here doing Miralax, and other things, so you just do what works for you.  

Too, I have been told, they are different types of Zofran, an expensive nausea med.  Get what works for you.  Pharmacy's carry different manufactures' meds, and I have seen people swear by one Zofran where the other, a disolving tab, makes them want to puke. With your treatments, I think you have that figured out.  Then there are rectal meds of course for pain and nausea...there are drops of pain meds that go sublingually, under the tongue, and these are always under your control for you. The goal, always is comfort and love, and I wish you a lot of both.

You have my heart with a prayer

NoTimeForCancer said:

God bless you and your brave

God bless you and your brave heart on this journey.

Dear Licha

I am so sorry that you are at this point in your journey.  If you are not ready to throw in the towel, I would recommend you get a second opinion from another oncologist.  When it comes to your life, a second opinion couldn't hurt.  I don't know which chemo meds you've been on, but another doctor may offer you different options.

Sending lots of prayers and good wishes your way.

Hugs,

Kelly

Cafewoman53 said:

Whatever you choose to do

You should not be in pain, I would call hospice because they know what pain meds will work for you,it doesn't mean you are giving up. No one should be in pain on a daily basis.

Final journey

can radiation be an option for you...I hate the thought of nothing else can be done for you. How are you feeling now..are you eating and drinking? Please know my thoughts and prayers are with you.....Val 

Licha said:

Final journey

Thank you so much for your suggestions and I wonder how can I find hospice help is it through insurance?

my insurance is very good ai also have Medicare, but  where do I need to start. Thank again

Bless your heart. Much Much

Bless your heart. Much Much Love to You.

To answer your question as to where to / how to get started. You can look up Hospice Care in, well I was going to say phone book. Google will work. Ask people you may know, ask for references when you interview a Hospice company. You ARE in the driver's seat. Aside from an RN, they also have Dr's on call 24/7.  Find out if the Hospice Agency (the location that is serving you) is established, will you have the same nurse? Tell them your preferences. Make sure it / they are a good fit for you.  Some time with new Hospice companies / agency offices, while they may be good and caring, there are often staff changes because of the coming and going of staff due to census, the number of folks on service. Too, they should have volunteer services. For example, my husband volunteered and read to a patient. A volunteer can do many things, they just don't provide care.  They can assist as needed, usually scheduled.  Some folks need this, others do not. 

My understanding from the office side is, Medicare payments go to Hospice while you are in their care. Hospice will take care of all care that is diagnosos related.  Hospice / Medicare will pay for medications that are diagnosis related.  If one of your medications is expensive, they will offer a substutition.  A Hospice company will and should have a Durable medical equipment company who will provide bed, commode, w/c, etc. The Hospice company will also have a pharmacy, usually one who delivers medications to you.  Ask about this benefit if you need it.

If something happens not diagnosis related, you have not lost Medicare benefit to go see your GP or ER if you break somthing, for example. You will and do have the choice to retain your physician, whom ever you designate them to be, and / or work directly with the Hospice physician who often times is the Medical Director of the Hospice. Some physicians want to be involved with their patients as they transfer to Hospice. And /or if it is after hours, your primary physician may defer to the Hospice Physician / Medical Director.  Or your physician may be comfortable and transfer your care to the Hospice Physician, it is also what you wish as well.  Hospice is pallative, not curative, and at this time, often folks will simply utilize the Hospice Physician. They can and do make house calls. 

Your Hospice Nurse usually will have a good relationship with the Hospice Physician / Medical Director on staff.  Also, the Hospice team consisting of;  RN, Director of Nurses, CNA's (they are the ones who provide direct patient assistance under the direction of your nurse), Chaplain, Social Workers and Medical Director / Physician, office Administrative Staff meet every two weeks to discuss your care / case and to be on track with your care plan. They all have and provide input to aid in your needs; whatever they may be. Physicial, Social, Medical, Psychosocial. Whatever it is you need.

Having insurance is good, social workers can help there to explain your benefit. The Hospice staff will be able to identify this also. For example, as there may be a time when and if you have long term care to initiate it with you. And / or they can decipher your policy for and with you to understand exactly what it provides.  That is so tricky and there is so much in the fine print, one really has to be aware of what they are buying. You have good insurance, there too is the private pay option also. The Hospice administrative staff will have insurance / payment information for you. Write down your questions, so when you get your answers from Hospice companies, you can make the decision 1. How they answered you, 2. Followed up, 3. Listened to you. There are many companies, they will come and meet you if they are worth their salt. They have sales people. So it is good to be calm, have your questions, and interview THEM!  Aside from the company you will be working more closely with your RN. If you're leaning toward a particular Hospice, ask to meet the nurse who will be helping you. They will be with you up to the end of your life with you, and you want to like them, trust them. They will interact with your family. They will be in your home with you during whatever, and you need to be able to ask them anything and know they will go to bat for you with whatever your need is.

Too, when and if you should need, there is also a crisis care availibility that Hospice can provide. This begins when there is an emergent need, which can and could be many things. Crisis care, mislabled as Continuous Care can be misleading. The intent is to get you through and over a crisis, it could be a pain crisis, it could be your caregivers are no longer able to care for you for whatever reason, and you are unable to care for yourself. The Hospice I work for also have Crisis Care during patient decline during the dying process. Some families are able to care, administer meds, and others are not. It is for you, for your needs.  Training / teaching is also done with family members. 

Long term care can, if you have it can provide someone in the home, for a period of time, and some time too there is a waiting period, this can start at your diagnosis date.  This the Social Workers can help you with. Insurance companies are all unique. A Hospice company will work with and for anyone in your home that is helping you. 

I hope this helps, and if I can possibly do more, I will.  

Mary

I just want to say too, that WHEN, not IF, as my husband puts it, the warranty is running out and there is no more the service tech can do, hospice can be and is a shelter, not a death sentence, but a place to be sheltered and live and love each day, with more comfort than pain, so that life is lived and that one is enable to enjoy love and our precious breath. Fight! Give it ALL, Have NO DOUBTS. And after the fight, if that's it, when that sob has knocked you flat out, take your corageous spirit, with more peace and love and dignaty than I have ever known, and live your life to the fullest.  Man, this experience puts a magnifying glass in front of me and lets me see things a lot closer. Bless all ya'lls hearts and thank you.