Pain

Palliative Care/Hospice

My husband's oncologist suggested in September 2013 that my husband consider in-home hospice.  He told us that he could stay on in-home hospice as long as needed and that they could be his eyes and ears.  This is something we never knew before always thinking that hospice was always for the last few months.  My husband has been on in-home hospice since that time.  Hospice did tell me in the beginning that they can graduate you off of hospice if they feel you don't need it any more but that rarely happens with cancer patients.   Hospice only gives you enough medication for 15 days so you have to keep on top of it.  The nurses that come to our home are always nice and a great help.   In fact one night one had to come to our home at 9:30 pm because my husband's feeding tube came out and she changed it right then while he sat in his recliner.  Me, I don't think I could come to a strange home at that time, and for that matter, even during the day.  So my hat is off to these women.

This is something you might want to talk to your doctor about.  I don't know what type of insurance you have.  My husband is on Medicare and so far we haven't had any expenses to pay for.  I do know that hospice only covers the medication you are on for the cancer.

My husband is declining and there have been times I feel he should be checked but he won't let me call them.  Call it a man thing, at least I do. And always when the nurse makes her next visit I tell you what has happened.    I am thankful that his pain is controlled.

Wishing you peace and comfort.  Sharon

 

KTeacher said:

Thank you

I find out the results of my PET scan tomorrow.  I will find out if I continue on palliative chemo (taxol) or if I stop.  I will be going on Medicare in April.  We will be looking into supplimental programs next week.  Thank you for the information.  I think I need to contact Longterm Survivor for some information also.

I'm here Bev

Write me here or PM me either one if I can help.  Pain control has been pretty high on my priority list the last half a year or so.  I've kept up with it, but just barely, and with the distances involved to see the oncologist it has been a real pain (pun intended).  I just went on hospice care a week ago.  I've already got things under better control.  Local help with physician supervision.  A nurse comes to see me here at home twice a week, and there is lots of other stuff as well.  I'm pretty weak, and I've lost a bunch of weight, so I got a better chair to sit in (hospice provided) and mattress (cause my hips hurt from too much time in bed).  Also I'm getting better care at certain things, including constipation, which has been quite a problem on the narcotics).  I'm not giving anything up.  I've been on paliative care for a year.  That included toxol and other chemotherapies.  That was never intended to be curative, merely paliative, and I've been off chemo for about 4 months now.  I had to talk my wife into getting these people out here.  My wife is a former geriatic social worker, but so much has changed with hospice in the last 20 years she was way out of date.  We are glad they've arrived.

 

If you are having significant pain, and that pain is new, you know the implication.  I had a few months of tumor response, although taxol was a really hard drug for me to take.  The oncologist never once suggested any of this to me,  he's one of those guys who doesn't seem to know how.

 Pat

 

 

 

 

 

 

 

KTeacher said:

Thank you Pat

I will find out more tomorrow.  I plan on asking lots of questions.  Taxol hasn't been difficult.  This new pain is concerning.  I don't know what to write sometimes.  I will pm you with some of the more difficult questions.  I'm feeling that I want to put some things on the general board, I am finding that there is not much information on this part of the journey.  I know we are all survivor's, I guess people can just scroll on if they don't want to read my posts or don't find them helpful.  I feel so bad for my husband having to watch me go through this.  I don't think that my son understands what is happening.  We went down to Southern California to see a new grandson, when it was time to leave my son said get better mom.  I burst into tears.  I don't cry that often.  I did then.

Please keep posting........

Bev I feel you should keep posting, and if it is just a bad day, write it down as well. Some may chose to skip over and I respect that as do you. When I said, i'm here to give support, that is what I ment. There will be times I might not know what to say, but you will always have my support and prayers. 

I do understand your son, from both sides. First my parents, and we discused everything with my Dad'a cancer and my Mothers Kidneys falling. Also with my son when he thought I would not make it. I told my son I understand what he is feeling, but now is the time to ask me questions you might have so I can answer them. If you wate to long, they don't get answered. Sounds hard, but I did with my Mom, but didn't with my Father and I regreat it for 30 years. To be given that time is running out sooner than we want, you have time to say things so many never have. I was suposed to only have 6 months with my Father, but we got 6 years. When my Mom pulled the plug on dialysis, we had 12 days. I spent every one with her and have no regreats, I was lucky to have the time to say everything. Yes, it is very sad, and a blessing too.

Have peace.

Bill

it hurts to hear about your pain

Bev,

Now that Pat has responded I feel you have got the best we have to offer.  Work the problem with your doc, those pharmacies are full of pills where something might work.

You answered my first post  (as did Hondo, Kent, Skiffin, Phrannie, Tim, Greend and Patricke) and I hoped we would cross paths on one of your trips to Portland.

Always my best for you.

Matt

KTeacher said:

Thank you Pat

I will find out more tomorrow.  I plan on asking lots of questions.  Taxol hasn't been difficult.  This new pain is concerning.  I don't know what to write sometimes.  I will pm you with some of the more difficult questions.  I'm feeling that I want to put some things on the general board, I am finding that there is not much information on this part of the journey.  I know we are all survivor's, I guess people can just scroll on if they don't want to read my posts or don't find them helpful.  I feel so bad for my husband having to watch me go through this.  I don't think that my son understands what is happening.  We went down to Southern California to see a new grandson, when it was time to leave my son said get better mom.  I burst into tears.  I don't cry that often.  I did then.

Write/say what you feel....

We've all been walking down this road....some longer, some shorter.....but shoulder to shoulder in support, love....and MUCH caring for a long time.  The pallative path is one that could be in any of our futures....every step we take with you, Pat.....and now Joe.....is not only because we truly do care and want to be there for you....but it's a way to learn to get through our own futures.  Everyday I've been on this site since the beginning, I have walked away knowing something I didn't know before.  Not just treatment help, or after treatment do's or don'ts....not just the clinical things.  But I find out about myself....the "who" of me.....I am a better person all around because of the time I've spent here.  Helping others either by what I've learned....or merely holding someone's hand.....it's all changed me.  We're friends to the end....period!!  Hugs to you, KT.....I'm praying they get you some releif today.....Pat....You are our brilliant star....the one we look to, to find out exactly what's what.  Everybody feels better when you've posted and we hear the nitty gritty from a physician's point of view.  Together till the end.....that's how I feel.

p 

It must be the weather

 

I am not sure why but lately my pain and spasms have also been on the increase. Not sure if I need a change in medication or in climate, just hopping for more sunny days ahead. The way I look at it now is, it is always something.     

Tim

Sorry for your pain.

 If you are in a state that allows medical cannibus talk to Dr. I was resistant but conventional meds were insufficent. My brother suggested I try so I ask Dr. In Mississippi the only way to get it is if you have a seizure disorder. I have been considering moving to a state that is more liberal. I want to get back in the mainstream of life and get off the opiates.