He finally asked *the question*

UKLady
UKLady Member Posts: 85
in Caregivers #1
hi everyone- I had great fun plans for Valentines but it was chemo and Oncoman day too. I have known the prognosis for my husbands stage IV lung with brain mets since August and the ICU- its been like boxing with hands tied since he didn't want to know. And that was his right.
Until yesterday-that is. He asked and Oncoman answered- six more months.Two weeks ago he was working four day weeks. Today we talked wheelchairs for his continual loss of balance.

My feelings are so mixed- the last six months I felt we could have been making memories-but he was focusing on returning to normal life without even the possibility of surgery- that's brain mets for you.Altered his perception. Now he knows the truth- he is devastated all over again and I worry he will not find peace of mind long enough that as newly married- we shall ever have good memories but part of me is of course relieved that at last we are on the same page with the truth.

I try to do or plan things that will lift his spirits but he just withdraws more and says less. Of course he is depressed and has medication but I feel I am running out of steam doing this alone.

If you read my info page you will know there is no other choice!

Sorry for the deflating post- usually I am more upbeat than this!

Best to you all

Lyndsey

Comments

  • zinniemay
    zinniemay Member Posts: 522
    #2
    with you
    Lyndsey, It is a nasty thing e have to work at every day. My husband was given 1-2 years with treatment , we are not always on the same page. Each day I worry. I try to stay positive as I can but each cough, or strange noise makes my heart skip a beat in fear.
    I know I not saying this right, my heart is breaking I can feel the peices fall to the fllor. But I try so hard to just think things out one day at a time. and remember I loved his yesterday I love him today and that will not change come tomorrow.
    We are almost to the 37 th year of our marriage. How lucky are we! I know we have been so blessed.
    I think sometimes it is the simple things we find the most joy in. Like watching T.V. and Old Judge Judy. Who knows what tomorrow will brang , I sure don't I just know today he is with me and I am happy.
    Wish I could help you, I know it is not easy to feel so alone. You can email me on here privately and I will give you my email or phone number what ever to help you if you ever need to talk or someone to listen to what you need to say.
    Your friend
    Jennie
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #3
    Lindsey
    When my husband was diagnosed in July with liver cancer all of the prognosis reports said 3-18 months. He continued to make long term plans for the first 4 months, and then in December we had a long discussion one night and talked about end of life issues and cried in each others arms. Then he was air ambulanced to Virginia for a possible transplant and we never talked about it again. Every day I went into his hospital room and asked him "Do you want to keep trying for a transplant?" and everyday he said yes. On the 14th of January He said to me, "I don't want to do this anymore" and he passed away that afternoon.

    I guess my point is that I just waited for him to be ready to talk. I didn't try to correct him when he talked about what we were going to do when we retired, etc; I just let him arrive at his acceptance of his terminal illness on his own time frame. It was the hardest thing I'd ever done up to that point. Especially since I am a problem solver, a worrier, and a realist. I think coming to grips with your own mortality is an unbelievably difficult process. Each of us is different. My advice is to just be ready when he's ready. Take care of yourself during this difficult time and don't sweat the small stuff. Be on the look out each day for the small miracles and blessings, they're there, if you watch for them. And remember that love is eternal, and remain grateful for the time that you have together.

    Its easy to say, but it's REALLY hard to do. And none of us are doing it perfectly, believe me. Wishing you the best,
    Penny
  • karenbeth
    karenbeth Member Posts: 194
    #4
    prognosis
    Lyndsey,
    I know what you mean about "boxing with hands tied"--my partner was also diagnosed with lung cancer with multiple brain mets in July 2010. He is is still undergoing first line treatment and luckily is responding some. The whole brain radiation did away with most of the brain mets. However he has new (small) brain mets and obviously that is not a good sign. He goes to his treatments but if I don't push him he is very passive about making and keeping appointments, asking questions, and has never once asked about his prognosis. He doesn't come to these message boards either for information or support. I supposed I too am in some sort of denial and as long as he is feeling okay, able to work, and we have a shred of hope, I can bury my head in the sand and push my fears away. But we are going to have to have the big conversation one day soon.

    I'm sorry there is no better news for you and your husband. I hope that you are able to enjoy whatever amount of time is left.

    Karen
  • UKLady
    UKLady Member Posts: 85
    #5
    Update ICU
    Bless you for all your responses which are full of common sense as always. Since he asked the question he just nosedived spectacularly. I had to take him on Oncoman's advice to the ER this afternoon.

    He was agitated all morning and just me leaving him for ice packs for his nerve pain which is at the primary tumour site upset him. By noon he was more confused than usual - dementia from whole brain radiation appeared the last month. Ice cubes in the microwave - that sort of thing ;-)

    Bearing in mind he was at his field office just over a week ago,it's a bit of a bungee jump from where I stand, after what we have been through already.

    He is in ICU due to "blood test results"- now sorry for the language folks but what the bleepity bleep does that mean-precisely? A question I ask rhetorically of course here.Could a doctor explain? Apparently not till tomorrow - so how come they could make that decision this evening? Which blood test even? He had chemo Monday -'bloods were fine. We all know we here ask questions,maybe not always the right ones even- but not even an answer? Well not answers that agree. One nurse said he had an infection, another a stroke possibility. ICU still doesn't make sense based on that.

    Seeking a doctor this evening is like seeking the Scarlet Pimpernel! Me and Oncoman have a very hot date in the morning not that he knows this. Currently I am this heady mix of calm and serenity with more than just a dash of seething at lack of communication.

    I knew I was a "cool Brit" for a reason ;-)

    Lyndsey,
  • zinniemay
    zinniemay Member Posts: 522
    #6
    UKLady said:

    Update ICU
    Bless you for all your responses which are full of common sense as always. Since he asked the question he just nosedived spectacularly. I had to take him on Oncoman's advice to the ER this afternoon.

    He was agitated all morning and just me leaving him for ice packs for his nerve pain which is at the primary tumour site upset him. By noon he was more confused than usual - dementia from whole brain radiation appeared the last month. Ice cubes in the microwave - that sort of thing ;-)

    Bearing in mind he was at his field office just over a week ago,it's a bit of a bungee jump from where I stand, after what we have been through already.

    He is in ICU due to "blood test results"- now sorry for the language folks but what the bleepity bleep does that mean-precisely? A question I ask rhetorically of course here.Could a doctor explain? Apparently not till tomorrow - so how come they could make that decision this evening? Which blood test even? He had chemo Monday -'bloods were fine. We all know we here ask questions,maybe not always the right ones even- but not even an answer? Well not answers that agree. One nurse said he had an infection, another a stroke possibility. ICU still doesn't make sense based on that.

    Seeking a doctor this evening is like seeking the Scarlet Pimpernel! Me and Oncoman have a very hot date in the morning not that he knows this. Currently I am this heady mix of calm and serenity with more than just a dash of seething at lack of communication.

    I knew I was a "cool Brit" for a reason ;-)

    Lyndsey,

    You for for it
    Lyndsey,
    You go for it, I don't know why they can not answer your questions. There is no reason for that . Or at least tell you something other than "I think" I am not as knowing as others on here. So I turn to a dear riend who is a doctor (don't ask me how I got so lucky to know him) But thank god I do. I told him what had happened and he called the doctors and I do not know what he said or did but the next day they were all there, let me and hubby ask questions and they answered them all. I an truely blessed to have some great people who can guild me into the right direction.
    I am praying for you my friend. I just wish I could express myself in a more meaningful way so you know I truely care.
    My heart and prayers are with you
    Jennie
  • neverquit
    neverquit Member Posts: 220 Member
    #7
    UKLady said:

    Update ICU
    Bless you for all your responses which are full of common sense as always. Since he asked the question he just nosedived spectacularly. I had to take him on Oncoman's advice to the ER this afternoon.

    He was agitated all morning and just me leaving him for ice packs for his nerve pain which is at the primary tumour site upset him. By noon he was more confused than usual - dementia from whole brain radiation appeared the last month. Ice cubes in the microwave - that sort of thing ;-)

    Bearing in mind he was at his field office just over a week ago,it's a bit of a bungee jump from where I stand, after what we have been through already.

    He is in ICU due to "blood test results"- now sorry for the language folks but what the bleepity bleep does that mean-precisely? A question I ask rhetorically of course here.Could a doctor explain? Apparently not till tomorrow - so how come they could make that decision this evening? Which blood test even? He had chemo Monday -'bloods were fine. We all know we here ask questions,maybe not always the right ones even- but not even an answer? Well not answers that agree. One nurse said he had an infection, another a stroke possibility. ICU still doesn't make sense based on that.

    Seeking a doctor this evening is like seeking the Scarlet Pimpernel! Me and Oncoman have a very hot date in the morning not that he knows this. Currently I am this heady mix of calm and serenity with more than just a dash of seething at lack of communication.

    I knew I was a "cool Brit" for a reason ;-)

    Lyndsey,

    Lyndsey, I hope you get the
    Lyndsey, I hope you get the answers you deserve to have. It's bad enough what you're going through, let alone not getting answers to some very basic and expected questions. Somehow, I think that will not happen again after you see your Doc today. Hang in there, you are a great caregiver for your husband.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #8
    UKLady said:

    Update ICU
    Bless you for all your responses which are full of common sense as always. Since he asked the question he just nosedived spectacularly. I had to take him on Oncoman's advice to the ER this afternoon.

    He was agitated all morning and just me leaving him for ice packs for his nerve pain which is at the primary tumour site upset him. By noon he was more confused than usual - dementia from whole brain radiation appeared the last month. Ice cubes in the microwave - that sort of thing ;-)

    Bearing in mind he was at his field office just over a week ago,it's a bit of a bungee jump from where I stand, after what we have been through already.

    He is in ICU due to "blood test results"- now sorry for the language folks but what the bleepity bleep does that mean-precisely? A question I ask rhetorically of course here.Could a doctor explain? Apparently not till tomorrow - so how come they could make that decision this evening? Which blood test even? He had chemo Monday -'bloods were fine. We all know we here ask questions,maybe not always the right ones even- but not even an answer? Well not answers that agree. One nurse said he had an infection, another a stroke possibility. ICU still doesn't make sense based on that.

    Seeking a doctor this evening is like seeking the Scarlet Pimpernel! Me and Oncoman have a very hot date in the morning not that he knows this. Currently I am this heady mix of calm and serenity with more than just a dash of seething at lack of communication.

    I knew I was a "cool Brit" for a reason ;-)

    Lyndsey,

    Royal Pain
    I think I would make a real pain of myself until I got answers. Have you considered hospice. They are really good at answering questions. If they don't know the answer, they find out. Meanwhile, I would ask every nurse or dr that comes around to explain to you why he is in ICU. I went through a lot of hospitalizations and several ER runs. I know at times I was not the hospital's favorite person, but I didn't care. I always stayed polite, but I did get insistent. Dealing with a terminal dx is difficult enough. Sometimes I would start by explaining that I knew he wasn't going to survive this. Then I would ask what exactly was happening right now. I often found that nurses were best at explaining things. I told them I was the designated family worrier and I had to understand things better. Take care. It sounds like you have one of those famous roller coaster rides ahead. Fay
  • UKLady
    UKLady Member Posts: 85
    #9
    UKLady said:

    Update ICU
    Bless you for all your responses which are full of common sense as always. Since he asked the question he just nosedived spectacularly. I had to take him on Oncoman's advice to the ER this afternoon.

    He was agitated all morning and just me leaving him for ice packs for his nerve pain which is at the primary tumour site upset him. By noon he was more confused than usual - dementia from whole brain radiation appeared the last month. Ice cubes in the microwave - that sort of thing ;-)

    Bearing in mind he was at his field office just over a week ago,it's a bit of a bungee jump from where I stand, after what we have been through already.

    He is in ICU due to "blood test results"- now sorry for the language folks but what the bleepity bleep does that mean-precisely? A question I ask rhetorically of course here.Could a doctor explain? Apparently not till tomorrow - so how come they could make that decision this evening? Which blood test even? He had chemo Monday -'bloods were fine. We all know we here ask questions,maybe not always the right ones even- but not even an answer? Well not answers that agree. One nurse said he had an infection, another a stroke possibility. ICU still doesn't make sense based on that.

    Seeking a doctor this evening is like seeking the Scarlet Pimpernel! Me and Oncoman have a very hot date in the morning not that he knows this. Currently I am this heady mix of calm and serenity with more than just a dash of seething at lack of communication.

    I knew I was a "cool Brit" for a reason ;-)

    Lyndsey,

    updating- brain swelling and thinking of a switch
    Thanks for your valuable input and kind thoughts everyone-wish I had had more time to respond individually- so yes I had a talk with Oncoman. Flashback to last monday's chemo when I asked about the dexamethasone since Steve was becoming confused. Oncoman reduced the dose. This caused swelling in Steve's brain and guess what folks? Oncoman is back tracking and doubling the original dose!

    Helloooooo? Why do some of these doctors not listen to the person around the patient 24/7 and insist on going by the book? After- I read some good articles and what to look for when dexamethasone needs increasing beyond what might be normal limits. Its not too *out there* at 12mg day.

    I only got pain management referral for nerve blocking from Oncoman for Stevie by quite literally typing the question out and asking what he was going to do to resolve it. (I knew it had to go in his notes then) Grandmafay I so hear you on being polite but not popular! He did not listen for at least three chemo visits about this. (Primary tumour sits on a nerve resulting in huge amounts of morphine) He was pretty annoyed thinking us ungrateful due to Stevie's great scan results but not one time has Steve had relief from the excruciating pain this last 15 months or more-so my feeling was blow the scans what does the patient actually feel like? answer is pretty terrible of course!

    I have twice had to ask recently for replacement morphine prescriptions refused at the pharmacy as Oncoman apparently cannot write them accurately! This of course means a two hour return trip to collect the replacement as its a restricted drug. Yeah I know- I need the outings right? ;-)I'm thinking of asking Oncoman to deliver his prescription next time he stuffs it up! ;-)

    Is it me or should I be thinking we need a replacement? Because right now I am pretty frustrated with Oncoman and the last few weeks of not listening and surely writing a prescription accurately is pretty basic for a doctor????

    Good news is that Steve has responded well and lights are coming on again ;-) On an observation ward- so latest drama over til the next one!

    Best wishes and kind thoughts to you all

    Lyndsey
  • UKLady
    UKLady Member Posts: 85
    #10
    Pennymac02 said:

    Lindsey
    When my husband was diagnosed in July with liver cancer all of the prognosis reports said 3-18 months. He continued to make long term plans for the first 4 months, and then in December we had a long discussion one night and talked about end of life issues and cried in each others arms. Then he was air ambulanced to Virginia for a possible transplant and we never talked about it again. Every day I went into his hospital room and asked him "Do you want to keep trying for a transplant?" and everyday he said yes. On the 14th of January He said to me, "I don't want to do this anymore" and he passed away that afternoon.

    I guess my point is that I just waited for him to be ready to talk. I didn't try to correct him when he talked about what we were going to do when we retired, etc; I just let him arrive at his acceptance of his terminal illness on his own time frame. It was the hardest thing I'd ever done up to that point. Especially since I am a problem solver, a worrier, and a realist. I think coming to grips with your own mortality is an unbelievably difficult process. Each of us is different. My advice is to just be ready when he's ready. Take care of yourself during this difficult time and don't sweat the small stuff. Be on the look out each day for the small miracles and blessings, they're there, if you watch for them. And remember that love is eternal, and remain grateful for the time that you have together.

    Its easy to say, but it's REALLY hard to do. And none of us are doing it perfectly, believe me. Wishing you the best,
    Penny

    Penny

    thank you so much for your sage advice- don't sweat the small stuff really hit home. If you caught up with the rest of the thread you will see its been a trying week with more drama.
    You were right though- he asked me to go get his retirement paperwork on Tuesday -a huge leap for him towards acceptance- bless him.

    Hopefully it will not be too long before he has peace of mind.

    Sending you kind and calm thoughts

    Lyndsey

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