Denial or just surviving

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  • jen2012
    jen2012 Member Posts: 1,607 Member
    #22
    geotina said:

    Dear Jen:

    I am sorry for the spot you are in right now.   It is serious and if I understand your post correctly, both you and your husband know the situation you are in and the seriousness of it.   Pallative care teams are there to  make sure the patient and family are well informed of the situation, make informed decisions and develop a plan to make sure the patient is most comfortable with pain and the like.  If they have done this then they have done their job.   It is so very tough, I know this from experience.  If they are causing extreme distress, then ask them to discuss things with you in the hallway.  If you do not have a medical directive naming you as the decision maker, I might suggest you get one.  Make sure you know medically everything going on.  You can have this discussion in a conference room.  If you are not sure  of something, ask that they meet with you privately.  

    Take care - Tina

    timing

    Tina..Seems I tend to walk in on the end of the conversations.  I'm relying on the oncologist for all med info and emailing her for clarification as necessary.  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #23
    thingy45 said:

    Honestly hope is all we have

    honestly hope is all we have. We know that one day we have to acknowledge that we have done our best. Nobody can tell us when that day is. So hope is a powerfull mental state.

    we can also get hit by a car or bus, so who is to tell us otherwise, it makes me so angry when dr or nurses try to tell us how we should feel. You have enough on your shoulders that you should not have to deal with negative people also.

    you are so in my thoughts and prayers, every day.

    many hugs and keep smiling and hoping for better days to come.

    thanks thingy

    Its really good to know we arent alone in choosing to deal this way.  Nurses are pretty special...most have been so upbeat, encouraging and positive.  

     

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #24
    traci43 said:

    Yay, clear MRI!!!!

    At least that's one less thing to worry about!  Wish that was all you had to worry about.  I think what everyone else said about the doctors make sense.  I hope you can get them to talk to you instead of your husband.  You're doing a great job taking care of things.  Hope things improve and soon.  Traci

    me too Traci!
    I'm really looking forward to some normalcy again. I think his spirits will improve when he can get up and walk again. Very relieved the brain mri was good!
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #25
    Cathleen Mary said:

     
    Jen,  Just reading your

     

    Jen,  Just reading your post made me angry for all that you are going through. Although I know I am in  the minority, I have little use for pallative care or hospice.  I had terrIble experiences in that arena with both of my parents ( i thought the first was a fluke so was open to trying again) in much the same way you are experiencing. My own directives state that they are never to be involved in my care.  That said, I know many others feel they were absolutely wonderful and are forever grateful to them. 

    Would your husband's oncologist be willing to be the go-between and speak to the palliative care team?  You need a break. You have every right to have hope and to deal with this illness as best serves your family. 

    Hugs and prayers.

    CM

    good idea CM

    I think asking them to go thru the onc is a good idea.  We appreciate their help in managing the pain, just not the negativity that comes with it.  They zap the energy right out of the room.  My husband said just seeing their serious faces depresses him.  We definitely dont need that.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #26
    emma_s said:

    You chose the right thing - to have some hope

    Jen, my husband was in a similar situation after he had a surgery on broken femur last year in June. He was histerical, crying, had a lot of pain, trying to convince me and my son that this was the end, etc. I thought my heart would break... And I had no choice but to pull myself together and be stronger as never before for the sake of my family and myself. I'm often trying to focus on positive things even it's hardly to see any. Gradually I became kind of a psychiatrist for my husband even though I need one for myself too.

    I was in awe when his surgeon asked me looking straight in my eyes: "Do you knbow that there is no cure for bone mets?"

    At least my husband' oncologist always has plan for him. The chemo though my husband started 6 weeks after surgery. The main idea was to give as much as possible time for the leg to heal first.

    It's normal that your husband feels hopeless and extremely down. But I hope the things get better as soon as he starts moving a bit. They made my husband walk with a walker on the second day after surgery and on the 4th or 5th day they made him walk stairs.

    Hugs,

    Emma

     

    thanks Emma
    Thanks for sharing your husbands similar experience. They are getting him up but he can only go a few steps. Hopefully that will improve soon. Hugs to you too...not an easy path to walk.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #27
    Sundanceh said:

    Done the Brain MRI Too...

    And it's always good to hear of nothing there....that's the place that scares me the most.  I'm so glad that there is good news there for you two:)

    I'm so sorry, Jen, about everything you have to go through with.  Pain is a hard thing to get its arms around....it's such a moving target and fluctuates so much in any given day unless you're comatose.

    I've been battling horrific pain the past few months.....the pain med dosages are increasing, but I'm staying with, but I suffer in the interims as the body adjusts to the new dosages.....heavyt sweats head to toe, some nausea, sleepiness....and of course, you have to watch the breathing as this can be criticial....so I've really had to monitor to stay within the requirements...even with the pain.

    Past a certain point of pain, you simply can't think, have no patience or attention span to matter, because the pain overrides all.  So debilitating. 

    Tonight, I had to ramp up over normal just to get up and watch the news with Kim....and thought I would check here....and respond to your post. 

    I"m sorry about his broken femur....having to stop treatments for things to mend for several weeks is not our choice, but what are we going to do.  I'm dying on the vine right now waiting for an old appendix to heal up, so I can start taking treatments again.  Some choice...but the only one.

    The infection nearly got me though....it was close and I will be glad when it heals up and they pull the wound vac.

    I guess iin some way, I do empathize with what you are feeling.  The days march on so steadily that we ask ourselves if there will ever be anything else?  Things just meld together and form ouir new life.

    Anyway, sharing your story and I tell Kim about you both all the time:)

    I'm sorry we're so tough on our caregivers...like me, I"m sure your husband would do anything he could to alleviate your burdens.  We hate seeing our other hurt so much when we're not in a position to contribute the way that we want to.

    Here with you along with the entire community....

    -Craig

    hi stranger

    So glad to see your post and appreciate you doing so Craig.  Im sorry you are dealing with pain too.  It does make focus difficult.  He has 2 fentanyl patches and heavy dilaudid doses.  The sweating is horrible.  He was soaking thru 4 and 5 sets of clothes a day...plus sheets, pillows etc.  

    As i tell my husband, please dont waste any time or energy feel guilty for making things difficult for us.  We know this is not what you chose for yourself or us.

    As always, I appreciate your support and look forward to you posting regularly again.  Be well!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #28
    devotion10 said:

    Hang tough and disregard every comment that does not

    uplift you and your husband and give you hope. The palliative care team is there to bring about pain relief from the suffering of treatments, surgery, and chronic illness. Palliative care is not hospice ... but they do sometimes find themselves in a position to counsel patients and families when further treatment would decrease the quality of life remaining for a patient whose cancer is not curable and herein lies part of the problem. They may give advice to families before that advice is requested because they sense that the patient could have better quality of life remaining by not continuing aggressive treatment. Each of your husband's caretakers are seeing him likely from a differing perspective.

    But, your husband does still have treatment options that he wishes to pursue ... so anyone, including palliative care, who even goes close to giving you unsolicited advice that you do not wish to hear ... have a plan in your mind ahead of time as to how you will respond. This will help you I think as it did for me.

    You have a great deal of responsibility and this has been such a difficult time for your family.  Stay strong, maintain hope, and steer clear of those that bring you down including doctors-nurses, friends, and even family.  That is a strong statement, but I found that I needed all my strength to be the best advocate that I could for my husband and I did turn away from some people because they simply were not able to be truly supportive.

    You can do this. Your husband is going to feel better after he heals from this ordeal and your family will be back together. It is true you do not know what the future brings, none of us do ... but, you have each other now. 

    Peace be with you. ~ Cynthia

    Hi Cynthia
    Good advice. When I told my my husbands brother about the brain MRI, his response was "that doesnt sound good" i was silent...didnt know what to say, but geez thats really not a helpful or supportive commen th. Have had more sensitive and supportive comments than the stupid ones so I guess thats a plus.
  • rls67
    rls67 Member Posts: 127
    #29
    Hi Jen,

    I am sorry to hear about all you and your husband are going through. I understand exactly what you are going through as a care giver. My wife is not doing to well either. All I can say is stay strong. You are doing the best you can for your husband. You shouldn't have to deal with all the crap from drs. or hospitals. But unfortunatly it is part of being a caregiver. Some people, even drs and nurses seem to lack compassion. Hang in there Jen, you have a ton of people sending good thoughts and prayers your way. Take care of yourself as well. I hope everything gets better for him and he finds relief from his pain.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #30
    Jen

    At my local hospital they were talkng last year about their new forage into having a "palliative care" team, I was thinking at the time, I hope they don't feel the need to visit me (since I'm considered palliative care, as most of us are I think), I told my son if they ever come to pay a visit please send them away as I wasn't quite ready to go yet.  I think the intention is good, but I don't think they have thought this through, most of us with Stage IV are considered palliative care, I've been that for almost 4 years, so I think they should be careful about their doom and gloom stuff and save it for when I decide to go hospice (hopefully a long time away), I don't think the hospitals have this palliative care stuff figured out yet, yes, we are Stage IV, but we still have a lot of life in us, and their discouraging talks certainly don't help with the "let's kick these tumors arse" attitude that many of us have and are doing.  

    You are right to send them away, just tell them thank you very much, but you aren't needed at this moment.  Sheesh, this just ticks me off!

    Im glad to hear about the MRI!!!  And remember others have had bone mets and are still here!

    love and Hugs,

    Winter Marie

  • RobinKaye
    RobinKaye Member Posts: 93
    #31
    jen2012 said:

    pain control
    Thanks Marie...hes had the patches and has been taking dilaudid since his oct stay. The palliative care team added in gabapentin because the pain meds were making his legs jumpy. His pain is certainly better than a week ago but not gone. The palliative care doc was questioning him friday on why he still has pain..since they have not yet dealt with the reason for the pain I was surprised a doctor would question that. He didnt want to turn away services that could help, but we decided last night they are just not helping and i will be emailing his onc today to discontinue their visits.

    Jen,  have you checked to see

    Jen,  have you checked to see if there is a pain management team at your hospital. My sister had surgery for a tumor on her spinal cord (benign) which had weaved itself into the cord.  The pain she had and still has 3 years later was at times unbearable.  Medications were prescribed, most that you mentioned in your post, but it took pain specialists to get it all working right.  I don't know, just a thought. Doctors who don't specialize in pain management may just be prescribing what they are familiar with and may not understand how all that stuff works together. 

    Robin

  • devotion10
    devotion10 Member Posts: 623 Member
    #32
    Just thought of one more thing, kind of silly, but ...

    I don't know if folks are wearing masks in the room where your husband is ... but, when my brother was in the hospital with cancer we drew smiley faces on all the masks of anyone who came into the room. -- They may not be smiling under there but we made it seem as if they were!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #33
    rls67 said:

    Hi Jen,

    I am sorry to hear about all you and your husband are going through. I understand exactly what you are going through as a care giver. My wife is not doing to well either. All I can say is stay strong. You are doing the best you can for your husband. You shouldn't have to deal with all the crap from drs. or hospitals. But unfortunatly it is part of being a caregiver. Some people, even drs and nurses seem to lack compassion. Hang in there Jen, you have a ton of people sending good thoughts and prayers your way. Take care of yourself as well. I hope everything gets better for him and he finds relief from his pain.

    Thanks - I'm sorry your wife

    Thanks - I'm sorry your wife is not doing well.   This is a hard road for all involved.  Wish they'd just find the damn cure already.  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #34
    devotion10 said:

    Just thought of one more thing, kind of silly, but ...

    I don't know if folks are wearing masks in the room where your husband is ... but, when my brother was in the hospital with cancer we drew smiley faces on all the masks of anyone who came into the room. -- They may not be smiling under there but we made it seem as if they were!

    Cute idea Cynthia - but no

    Cute idea Cynthia - but no masks needed!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #35
    herdizziness said:

    Jen

    At my local hospital they were talkng last year about their new forage into having a "palliative care" team, I was thinking at the time, I hope they don't feel the need to visit me (since I'm considered palliative care, as most of us are I think), I told my son if they ever come to pay a visit please send them away as I wasn't quite ready to go yet.  I think the intention is good, but I don't think they have thought this through, most of us with Stage IV are considered palliative care, I've been that for almost 4 years, so I think they should be careful about their doom and gloom stuff and save it for when I decide to go hospice (hopefully a long time away), I don't think the hospitals have this palliative care stuff figured out yet, yes, we are Stage IV, but we still have a lot of life in us, and their discouraging talks certainly don't help with the "let's kick these tumors arse" attitude that many of us have and are doing.  

    You are right to send them away, just tell them thank you very much, but you aren't needed at this moment.  Sheesh, this just ticks me off!

    Im glad to hear about the MRI!!!  And remember others have had bone mets and are still here!

    love and Hugs,

    Winter Marie

    Thanks Winter Marie - I think

    Thanks Winter Marie - I think you are right about the doom and gloom stuff.  It's probably just my wrecked brain, but it's almost like some of them like the drama.  It makes me wonder if they've ever gone through anything like this and how they would deal with it.    At this point, I just want them to start chemo so it doesn't spread further.  Surgery is now and hopefully chemo will begin in 2 weeks.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #36
    RobinKaye said:

    Jen,  have you checked to see

    Jen,  have you checked to see if there is a pain management team at your hospital. My sister had surgery for a tumor on her spinal cord (benign) which had weaved itself into the cord.  The pain she had and still has 3 years later was at times unbearable.  Medications were prescribed, most that you mentioned in your post, but it took pain specialists to get it all working right.  I don't know, just a thought. Doctors who don't specialize in pain management may just be prescribing what they are familiar with and may not understand how all that stuff works together. 

    Robin

    That's a good suggestion

    That's a good suggestion Robin.  I will ask his oncologist about it today.   Thanks!

  • Phil64
    Phil64 Member Posts: 838 Member
    #37
    jen2012 said:

    hi stranger

    So glad to see your post and appreciate you doing so Craig.  Im sorry you are dealing with pain too.  It does make focus difficult.  He has 2 fentanyl patches and heavy dilaudid doses.  The sweating is horrible.  He was soaking thru 4 and 5 sets of clothes a day...plus sheets, pillows etc.  

    As i tell my husband, please dont waste any time or energy feel guilty for making things difficult for us.  We know this is not what you chose for yourself or us.

    As always, I appreciate your support and look forward to you posting regularly again.  Be well!

    heart

    Jen, Know that my thoughts and prayers are with you and your husband during these trials. Keep hope alive!

  • Nana b
    Nana b Member Posts: 3,030 Member
    #38
    jen2012 said:

    Thanks Winter Marie - I think

    Thanks Winter Marie - I think you are right about the doom and gloom stuff.  It's probably just my wrecked brain, but it's almost like some of them like the drama.  It makes me wonder if they've ever gone through anything like this and how they would deal with it.    At this point, I just want them to start chemo so it doesn't spread further.  Surgery is now and hopefully chemo will begin in 2 weeks.

    Jen
     
    Wishing him the best in

    Jen

     

    Wishing him the best in treatments, faces, and attutudes. 

     

    Take care of you. 

     

     

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