Hello everyone

okeydokey-sorry to hear things went the way they did but you, your husband and family are on my prayer list-What a fighter your husband is an amazing guy-God Bless.

okeydokey said:

terrible update

My hubby had his pet scan a few months ago,and it was bad news,His cancer has mets in the bones (spine) and to the lungs also.He is taking keytruda now---they told him it isnt going to cure him but maybe give him a little more time but his time is short they said.He is still doing amazing for the condition he is in.He has lost alot of weight.If it wasnt for the awful pain in his jaw.They have presribed morphine for it--it helps but doesnt completly get rid of it.He is still driving,and doing most of what he always has.He had 10 more rads to his spine which helped pain there.I am so afraid but there is nothing more to do.He keeps on keeping on though,and has such an amazing fighting spirit.I am so thankfull for that.He says he will fight to the end.As I said before he is truly amazing--please pray for him--prayer works wonders

Rita

keeping you both in my heart and prayers, Crystal

So sorry to read this about your husband

okeydokey said:

Yes I agree,and he is so much

Yes I agree,and he is so much a fighter that I hope his time is alot longer than dr says.They wanted him to talk to hospice,and he told them he wasnt ready for that yet.When he is having one of his good days without so much jaw pain I look at him and think that there is nothing wrong with him even.Of course I know that that is only a dream but still...Thanks so much for the prayers

Rita

i will tell you this one thing about hospice that we are discovering.......they aren't there to help people die, they are there to help people live the best lives they can live.  My mom was counseled to sign up with hospice after her diagnosis and her decision to not seek treatment.  (She's 83 and didn't want to deal with the side effects, etc.)  My first reaction was, "Holy cow, they must expect this to go FAST if they want her on hospice already!"   But that was NOT it at all - they wanted her to be able to have the support and care she needed in order to LIVE the rest of her life.  Hospice has been such a gift!  They've helped mom with equipment, medications, visits, they give her answers, comfort, laughter, hope........i can't say enough about them.  And they aren't "doom and gloom" and "waiting for you to die" at all......they've found so many ways to help her DO the things she wants to do.  And yes, when it comes to the point where mom IS looking at the last days of her life, they'll be there for THAT, too, and we'll have such a great relationship already built with the caretakers that it will be a huge comfort to have our hospice friends WITH us, instead of having strangers appear at the "last minute" with the expectation that we are to rely on and trust them. 

It sounds to me like your husband is an amazing fighter and talking to hospice isn't going to change that - if anything, they'll HELP him in his fight!  (Mom's nurse was just telling us of one of her patients who left hospice becasue she was no longer considered "terminal" and is doing well.  People often DO do better when they have the luxury of being cared for by a great hospice team.)   Best wishes to your husband - and to you - for his continued fight.  He sounds like quite the guy!!

~ accordiongirl

okeydokey said:

thank you accordiongirl

I have always heard hospice was just wonderful.I think in my husband's case having them come in would mean to him that he has given up (in his own mind)Also he had a friend that died the next day after they come in,and he is scared.To him I think it means he is going to die right away if they do,which I know is irrational.Also I believe he thinks he would have to quit all treatment,which I dont know about this (have heard different things)He wants to keep on with the keytruda in case it does give him more time.I know hospice is great,and maybe he will change his mind later.I am all for whatever he decides.How is your mother doing?Ihave read all your posts..I hope she is doing well.My prayers are with you both--again thanks for informative post.

Rita

You are correct that when you sign onto hospice, you DO stop treatments - i honestly think that's an insurance thing, because mom's Medicare pays for hospice, but won't cover any TREATMENT related to her cancer.  Hospice can help with symptoms and pain management, etc., but if mom wanted to treat something related to her cancer, she'd have to go OFF of hospice, get the treatment, then go back (unless she wanted to pay out of pocket).   So......there are some downsides, especially if, like your husband, folks want to continue with a course of treatment that they are on.

i would offer this one piece of advice for him if he's ever in a place to need it........gather information, talk with various hospice programs, ask questions, and get concrete answers before assuming that hospice means the end is near (as in a week or less).  What we found out when mom was encouraged to look into hospice is that 90% of people who are on hospice don't sign up until their health is so bad that they DO pass within days or a week or two.  Most patients are on hospice for under 2 weeks BECAUASE they don't seek out the services earlier.  My mom has been so blessed - hospice has provided her a 4 wheel walker after she had a fall, a transport chair because walking long distances is tough, they would get her a lift chair if she needed it.  When the time comes, i'm sure they'll bring in a hospital bed, commode, and anything else she needs.  All of this is cost free to mom and SO helpful.  They also send someone as often as mom wants to clean her apartment, do laundry, change her bedding, etc.  The cares that they provide to enable mom to LIVE the best she can is so very appreciated.  If more people would understand that hospice is to help in all those ways and not just hold your hand while you pass away, they'd certainly sign up earlier.  You are right, there's kind of a "stigma" or a "judgement" we tend to have with the word "hospice" and i'm learning through my mom that it's just not that way.

Encourage your husband to keep talking to his doctors, (and listening, too), and to share with them HIS feelings and desires, fears and worries, about his treatment and his future.  Together i'm sure they'll find the right path for HIM.....hopefully one that is long and healthy. 

All my best to you both.

~ accordiongirl

P.S.  mom is doing okay.  She has good days and bad days.  Swallowing/eating is her biggest challenge - she struggles with that a lot and coughs up a lot of phlem while trying to eat.  She will only eat at home now because of it.  She's also quite fatigued and falls asleep very easily if she sits down in her chair for more than a few minutes.  But she is still able to partake in some social activities at her apartment and hang out with my family some, though she tires easily.  Gratefully, she's not had a whole lot of pain as of yet.  She has some on the side of her face - we think there's nerve involvement - but to date it's been very manageable.  i'm extremely grateful for that.  And mom's attitude and sense of humor is firmly intact........she is on our cell phone plan and typically pays for several months at a time.  She recently told me "Maybe I should pay by the month now!"   We had a good laugh.....it's that, or cry.  i know that she's still willing to put up with the trials of her disease because when she IS done, i think she'll give up quite quickly and go with the attitude of "I'm done.  I'm ready to go be with my husband."   And when that time comes, i'll cheer her on as she will have earned that right to be with dad......and maybe i'll be a touch jealous as i miss my dad so very much and would love to be with him myself.