My friend's mom is in hospice today

Options
Helen321
Helen321 Member Posts: 1,459 Member
edited December 2014 in Colorectal Cancer #1

When I was at Sloan, I ran into an old friend from elementary school.  She was there for her mom who had stage IV cancer that had spread to her brain.  I was in chemo at the time and not in a very good mental place so I can't remember the original site.  The fact that it was in her brain stuck with me.  Today she went into hospice.  She is in her 60s.  I've only seen her mom a handful of times in the last few months but we had this connection because we were both going through the hell with anxiety at the same time.  I've kept in contact with my friend and we've been each others' sounding boards.  We just were able to understand what the other person meant when everyone else was carrying on with life.  I prayed for her a lot.  Added her to all my prayer chains.  I don't understand this stupid disease.  Why does a treatment work on one person and not the other?  I am greatful to be NED, I want to remain NED, I want her to be NED too, I want everyone to be NED.  Watching people go one by one has been harsh.  Why aren't we finding better treatments or a cure?  Sometimes it's all too much and makes me so angry.  As she enters hospice today in incredible pain, prayers needed that the doctors will stop her pain, and that she and her family will get through this together.  I pray for a cure to be found today.  Let today be that day.  That day has to come.

Comments

  • LindaK.
    LindaK. Member Posts: 506 Member
    Options
    What a good friend

    I totally agree with you Helen.  My husband was on home hospice for 3 weeks and then we finally had to take him to an inpatient facility due to his pain, confusion, instability, etc.  The home hospice care was not so great, I had some difficult middle of the night phone calls with them and then apologies all the next day by the administration of the Visiting Nurse Service.  Those apologies did not give me any comfort.  They had told us not to call 911, but the on-call hospice nurse (who was 50 minutes away) told me to call 911 if I felt I had to.  Seriously??  We did have one good nurse who was on call during the day and came to our house twice during some serious pain.  She was able to talk my husband into going into the inpatient facility.  He was totally unresponsive 4 days later so it was a good call, I could never have taken care of him in that state at home.  They provided such awesome care and pain control.  The nurses have complete power to up pain meds as they see fit.  My husband never had another extreme pain episode once he was admitted there.  For that  I am grateful.  It's a tough decision to make.  My husband would not go in the ambulance so I drove him.  It was a very emotional drive.  My husband passed away there after 11 days, it was peaceful as I imagined it could be so much worse.  No more suffering, only for me missing him so.  He was 61. 

    I have been focusing way too much lately on all the bad times, the hospitalizations, the NG tubes, the vomiting, the chemo, the hair loss - and all for what?  It is just so sad.  I have not heard one word from any of the people at either cancer center he went to. I want to write to them and ask them now where my husband falls in all their precious data.  They told him 2 years ago he had a 90% cure rate.  At the time, my husband (usually an optimist) said  "Well, someone has to be in that 10%"

    I wish for the same things Helen, 1 year ago tonight we had a surprise belated 60th birthday party for my husband and we also labeled it a "F Cancer:" party.  No more birthdays or parties for the man who wanted to live.  I'm sorry to be such a downer, but I am grieving.

    Linda

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Options
    LindaK. said:

    What a good friend

    I totally agree with you Helen.  My husband was on home hospice for 3 weeks and then we finally had to take him to an inpatient facility due to his pain, confusion, instability, etc.  The home hospice care was not so great, I had some difficult middle of the night phone calls with them and then apologies all the next day by the administration of the Visiting Nurse Service.  Those apologies did not give me any comfort.  They had told us not to call 911, but the on-call hospice nurse (who was 50 minutes away) told me to call 911 if I felt I had to.  Seriously??  We did have one good nurse who was on call during the day and came to our house twice during some serious pain.  She was able to talk my husband into going into the inpatient facility.  He was totally unresponsive 4 days later so it was a good call, I could never have taken care of him in that state at home.  They provided such awesome care and pain control.  The nurses have complete power to up pain meds as they see fit.  My husband never had another extreme pain episode once he was admitted there.  For that  I am grateful.  It's a tough decision to make.  My husband would not go in the ambulance so I drove him.  It was a very emotional drive.  My husband passed away there after 11 days, it was peaceful as I imagined it could be so much worse.  No more suffering, only for me missing him so.  He was 61. 

    I have been focusing way too much lately on all the bad times, the hospitalizations, the NG tubes, the vomiting, the chemo, the hair loss - and all for what?  It is just so sad.  I have not heard one word from any of the people at either cancer center he went to. I want to write to them and ask them now where my husband falls in all their precious data.  They told him 2 years ago he had a 90% cure rate.  At the time, my husband (usually an optimist) said  "Well, someone has to be in that 10%"

    I wish for the same things Helen, 1 year ago tonight we had a surprise belated 60th birthday party for my husband and we also labeled it a "F Cancer:" party.  No more birthdays or parties for the man who wanted to live.  I'm sorry to be such a downer, but I am grieving.

    Linda

    I so agree with you Helen.

    I so agree with you Helen. I'm finding myself very depressed and angry lately. And resentful that my life has changed irrevocably. We all have to go sometime but people who haven't been given this life sentence don't walk around with that dark cloud over their heads like we do.

    I don't think they're ever going to find a cure because of every cancer being different and everyone responding to the treatments differently within they're cancer category. It's going to have to be early detection. Yet with the rate of diagnosis at almost 50% of the population doctors are so slow to think that cancer could be a possibility for people. Hoiw many people on this forum were diagnosed at about 50 years of age? It seems like most of us. I think the genetic testing is going to be the way to go in the future. Where does it even come from? I have friends that had to put their horse down because he had a huge colon tumour. He's a horse, he ate only what we'd call a vegan diet, he was never around cigarettes, he didn't eat fast food or carcinogens or too much sugar. So how does that happen?

    I watched a show recently about cancer research and it was so deflating to hear about how long it takes to find new treatments and how few ideas actually make it to the point of doing testing. I hate cancer and I hate how people and their families suffer. It's such a cruel disease. Our lives are never the same, we always have to worry about it. I was just saying to my husband how I'm feeling really crappy today and so I have to worry if it's the cancer or another abcess while people like him can just not feel well and not have to have that be in their minds. It's soul sucking.  

     

  • Helen321
    Helen321 Member Posts: 1,459 Member
    Options
    LindaK. said:

    What a good friend

    I totally agree with you Helen.  My husband was on home hospice for 3 weeks and then we finally had to take him to an inpatient facility due to his pain, confusion, instability, etc.  The home hospice care was not so great, I had some difficult middle of the night phone calls with them and then apologies all the next day by the administration of the Visiting Nurse Service.  Those apologies did not give me any comfort.  They had told us not to call 911, but the on-call hospice nurse (who was 50 minutes away) told me to call 911 if I felt I had to.  Seriously??  We did have one good nurse who was on call during the day and came to our house twice during some serious pain.  She was able to talk my husband into going into the inpatient facility.  He was totally unresponsive 4 days later so it was a good call, I could never have taken care of him in that state at home.  They provided such awesome care and pain control.  The nurses have complete power to up pain meds as they see fit.  My husband never had another extreme pain episode once he was admitted there.  For that  I am grateful.  It's a tough decision to make.  My husband would not go in the ambulance so I drove him.  It was a very emotional drive.  My husband passed away there after 11 days, it was peaceful as I imagined it could be so much worse.  No more suffering, only for me missing him so.  He was 61. 

    I have been focusing way too much lately on all the bad times, the hospitalizations, the NG tubes, the vomiting, the chemo, the hair loss - and all for what?  It is just so sad.  I have not heard one word from any of the people at either cancer center he went to. I want to write to them and ask them now where my husband falls in all their precious data.  They told him 2 years ago he had a 90% cure rate.  At the time, my husband (usually an optimist) said  "Well, someone has to be in that 10%"

    I wish for the same things Helen, 1 year ago tonight we had a surprise belated 60th birthday party for my husband and we also labeled it a "F Cancer:" party.  No more birthdays or parties for the man who wanted to live.  I'm sorry to be such a downer, but I am grieving.

    Linda

    Hey Linda, that's a great

    Hey Linda, that's a great party!!!!  I am celebrating my 45th today=)  It's funny how that whole 90% thing gets told to anyone, I was the 10% the first time.  This time I'm hoping I'm the 93% category I'm in now.  I'm sorry your husband went through all that, it really is hard to remember the good times with all the chaos.  They're in there, you just have to find them and force them to the surface.  I spend a lot of my therapy doing that.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    Options
    JanJan63 said:

    I so agree with you Helen.

    I so agree with you Helen. I'm finding myself very depressed and angry lately. And resentful that my life has changed irrevocably. We all have to go sometime but people who haven't been given this life sentence don't walk around with that dark cloud over their heads like we do.

    I don't think they're ever going to find a cure because of every cancer being different and everyone responding to the treatments differently within they're cancer category. It's going to have to be early detection. Yet with the rate of diagnosis at almost 50% of the population doctors are so slow to think that cancer could be a possibility for people. Hoiw many people on this forum were diagnosed at about 50 years of age? It seems like most of us. I think the genetic testing is going to be the way to go in the future. Where does it even come from? I have friends that had to put their horse down because he had a huge colon tumour. He's a horse, he ate only what we'd call a vegan diet, he was never around cigarettes, he didn't eat fast food or carcinogens or too much sugar. So how does that happen?

    I watched a show recently about cancer research and it was so deflating to hear about how long it takes to find new treatments and how few ideas actually make it to the point of doing testing. I hate cancer and I hate how people and their families suffer. It's such a cruel disease. Our lives are never the same, we always have to worry about it. I was just saying to my husband how I'm feeling really crappy today and so I have to worry if it's the cancer or another abcess while people like him can just not feel well and not have to have that be in their minds. It's soul sucking.  

     

    I'll be glad to get to my

    I'll be glad to get to my 50th birthday, I'm 45 today=)  I did genetic testing but the department told me that even that is not advanced enough.  Better than the 80s and 90s but still not far enough.  I think it's all financial.  Cancer is a big money maker.  At $2500 per treatment for oxilaplatin, they are sure making a lot of money. Sorry you're feeling crappy.  You are right it's soul sucking.  Thankfully once you are finished with treatment and have a few good scans, little by little your brain starts to let you relax.  Birthdays are hard and holidays, because you're very aware that you are lucky to have them.  Like today.  I'm very greatful to have today.

  • LindaK.
    LindaK. Member Posts: 506 Member
    Options
    Helen321 said:

    Hey Linda, that's a great

    Hey Linda, that's a great party!!!!  I am celebrating my 45th today=)  It's funny how that whole 90% thing gets told to anyone, I was the 10% the first time.  This time I'm hoping I'm the 93% category I'm in now.  I'm sorry your husband went through all that, it really is hard to remember the good times with all the chaos.  They're in there, you just have to find them and force them to the surface.  I spend a lot of my therapy doing that.

    I'm trying

    Not to dwell on the negative, but it is hard most days.  I'm taking it day by day

    Linda