Palliative Care

Shayenne
Shayenne Member Posts: 2,342
edited March 2014 in Colorectal Cancer #1
This has been really making me nervous. I am supposed to go for palliative care to manage my medicines better, and make sure which one is working better for what, but I always associated it with end-of-life care, and am concerned they said it isn't about thst, but I can't get over the feeling that they are wanting me to prepare for end of life, to get things in order. I'm just really scared that my time is actually almost up for me.

It looks that way when I google it too, associating it with hospice. I'm starting to have feelings of despair and numbness.....

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Palliative care
    Donna, this is off of the internet, wikipedia.com

    Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. It should not be confused with hospice care which delivers palliative care to those at the end of life.
    -p
  • punch_vj
    punch_vj Member Posts: 88
    Definitions...and Context
    I have had the unfortunate "pleasure" of being intimate with hospitals too, for the past several weeks. My sis has also seen the pain management team, or palliative medicine team. Palliative med is concerned with initiating/managing pain, and other symptoms of this disease.

    I infer from your recent posts that they are involved in your case for this purpose, reviewing what you're taking, trying to get the "right" meds to alleviate your aches & pains. Of course, palliative care is an integral part of hospice care, too. However many patients utilize these services with chronic illnesses , like neuropathic pain for diabetes, MS, serious trauma recovery, etc. So, pray/breathe/and keep on livin' and lovin' with all your friends/family in real life and your CSN family :)

    Blessings and peace,
    V.
  • punch_vj
    punch_vj Member Posts: 88
    PhillieG said:

    Palliative care
    Donna, this is off of the internet, wikipedia.com

    Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. It should not be confused with hospice care which delivers palliative care to those at the end of life.
    -p

    On the money, Phil :)

    On the money, Phil :)
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Donna,since I just moved to
    Donna,since I just moved to the U.S not long ago,so I have very little life experience here and I don't quiet understand about all types of care.But I think you are doing well,you got obstruction in your bowel,from what I heard,this is a very common complication from colon surgery.Please relax,plus Beth also told us that the scan of your liver is clear,so that means the chemo is working very well and at least it is moving along.Please don't scare yoursefl,and you should see if you need doctor to give you anti-depress medication.Take care.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Not Your Time...
    Hi Donna

    Phil has already nailed it and V has confirmed.

    You've still got your treatments to do yet which should yield some results. The end is not near for you...my doc said it actually takes some time before one would pass - now this is not the case, but just letting you know, you are going to be here...and for awhile too.

    Your mind and body have taken quite a lick the past month from your blockage issue and the resulting surgery on the scar tissue and the port removal and re-insertion...right now you feel you are at a low point, because your strength and enery are not as high as you would like to help you combat the illness. The mind can work for you or against you.

    It just sounds like they are trying to get a team that can assist you in a more specialized way to ease some of your pain and to oversee your condition - you're not headed to a hospice.
    See what they have to say first, then alot of your fears & questions should be answered.

    I know words can sound "hollow" at times like these, but this is another step in your journey and you have many more chapters to write and tell us about. It's not your time to go anywhere now or in the future. Remember the fable "The Tortoise and the Hare?" The race is not always won by the swiftest - steady steps towards the finish line still yield the same victory!

    You are a tough gal and one day will be using this as one of your war stories when you help inspire others on what you survived.

    Rest your mind - when the mind is right, you can fight! This may be the biggest thing you can do is just rest, rest, and more rest. I'm sure you will see it in a different light.

    Everybody here is praying for you...and it's tough now, but will be so glorious when you overcome the odds.

    I'm going to pray for calm and peace to enter your life, so that you can be open to all of the possibilities that the doctors present to you. Life is very precious and you have much to live for - your daughters have the same beautiful spirit as their Mom!

    I'm sorry you are in such a quandry right now, but with everybody's help and your fighting spirit, things will work themselves out - you will see.

    My continued best to you
    -Craig
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Sundanceh said:

    Not Your Time...
    Hi Donna

    Phil has already nailed it and V has confirmed.

    You've still got your treatments to do yet which should yield some results. The end is not near for you...my doc said it actually takes some time before one would pass - now this is not the case, but just letting you know, you are going to be here...and for awhile too.

    Your mind and body have taken quite a lick the past month from your blockage issue and the resulting surgery on the scar tissue and the port removal and re-insertion...right now you feel you are at a low point, because your strength and enery are not as high as you would like to help you combat the illness. The mind can work for you or against you.

    It just sounds like they are trying to get a team that can assist you in a more specialized way to ease some of your pain and to oversee your condition - you're not headed to a hospice.
    See what they have to say first, then alot of your fears & questions should be answered.

    I know words can sound "hollow" at times like these, but this is another step in your journey and you have many more chapters to write and tell us about. It's not your time to go anywhere now or in the future. Remember the fable "The Tortoise and the Hare?" The race is not always won by the swiftest - steady steps towards the finish line still yield the same victory!

    You are a tough gal and one day will be using this as one of your war stories when you help inspire others on what you survived.

    Rest your mind - when the mind is right, you can fight! This may be the biggest thing you can do is just rest, rest, and more rest. I'm sure you will see it in a different light.

    Everybody here is praying for you...and it's tough now, but will be so glorious when you overcome the odds.

    I'm going to pray for calm and peace to enter your life, so that you can be open to all of the possibilities that the doctors present to you. Life is very precious and you have much to live for - your daughters have the same beautiful spirit as their Mom!

    I'm sorry you are in such a quandry right now, but with everybody's help and your fighting spirit, things will work themselves out - you will see.

    My continued best to you
    -Craig

    Palliative care
    Donna, since pain meds, anxiety meds, nauseau meds CAN slow down digestion, possibly the team will help you with dosages and choices of meds to keep you from getting another obstruction.

    I didn't realize palliative care is for pain relief/ controlling nausea from chemo, etc., so I would have freaked out, too!

    Diane
  • Hatshepsut
    Hatshepsut Member Posts: 336 Member
    Sundanceh said:

    Not Your Time...
    Hi Donna

    Phil has already nailed it and V has confirmed.

    You've still got your treatments to do yet which should yield some results. The end is not near for you...my doc said it actually takes some time before one would pass - now this is not the case, but just letting you know, you are going to be here...and for awhile too.

    Your mind and body have taken quite a lick the past month from your blockage issue and the resulting surgery on the scar tissue and the port removal and re-insertion...right now you feel you are at a low point, because your strength and enery are not as high as you would like to help you combat the illness. The mind can work for you or against you.

    It just sounds like they are trying to get a team that can assist you in a more specialized way to ease some of your pain and to oversee your condition - you're not headed to a hospice.
    See what they have to say first, then alot of your fears & questions should be answered.

    I know words can sound "hollow" at times like these, but this is another step in your journey and you have many more chapters to write and tell us about. It's not your time to go anywhere now or in the future. Remember the fable "The Tortoise and the Hare?" The race is not always won by the swiftest - steady steps towards the finish line still yield the same victory!

    You are a tough gal and one day will be using this as one of your war stories when you help inspire others on what you survived.

    Rest your mind - when the mind is right, you can fight! This may be the biggest thing you can do is just rest, rest, and more rest. I'm sure you will see it in a different light.

    Everybody here is praying for you...and it's tough now, but will be so glorious when you overcome the odds.

    I'm going to pray for calm and peace to enter your life, so that you can be open to all of the possibilities that the doctors present to you. Life is very precious and you have much to live for - your daughters have the same beautiful spirit as their Mom!

    I'm sorry you are in such a quandry right now, but with everybody's help and your fighting spirit, things will work themselves out - you will see.

    My continued best to you
    -Craig

    Another reassuring statement
    RE: Palliative Care

    Donna:

    Here is a reassuring excerpt from a statement published on the MD Anderson website about palliative care. Their site specifically addresses the misconception that palliative care is only for "end of life" patients.

    I've read your posts and followed your progress. You sound to me like one strong, spunky lady who has all the attributes to be a survivor.

    Congratulations on your victories thus far. Savour your return home to your family.

    Hatshepsut



    "The World Health Organization defines palliative care as care which focuses on patients with life-threatening diseases. The goal of palliative care is to prevent and relieve the suffering of cancer patients and provide the best possible quality of life, regardless of age, cancer stage and treatment plans.

    Many people believe that palliative care is only for patients whose cancer cannot be treated or who are close to the end of life. In fact, palliative care is most useful when it is started along with cancer treatment. This way it can help treat common symptoms caused by treatment and ensure the best quality of life. For this reason, palliative care is often referred to as supportive care or symptom control. If the patient's cancer cannot be treated, then the palliative care focus shifts to end-of-life care, which is often provided by a hospice.

    Palliative care can include:

    Treatment of pain and other physical symptoms, such as fatigue, nausea, constipation, poor sleep, loss of appetite and weight loss
    Treatment of emotional symptoms, such as depression and anxiety
    End of life care"
  • Shayenne
    Shayenne Member Posts: 2,342

    Palliative care
    Donna, since pain meds, anxiety meds, nauseau meds CAN slow down digestion, possibly the team will help you with dosages and choices of meds to keep you from getting another obstruction.

    I didn't realize palliative care is for pain relief/ controlling nausea from chemo, etc., so I would have freaked out, too!

    Diane

    Thanks Friends....
    ....No, my liver scan didn't come up clean, I still don't even know my results to the 2nd CT results, since the pain started the day after my scan, and then I admitted myself to the hospital on July 4, I think Beth meant my first scans, when they showed that the chemo was killing was most of my cancer, which I hope it still is!

    I only have 5 treatments left, and it seems that something always happens in-between these treatments, which I'm afraid is making me go off track :(

    I still have fight in me, I don't feel like I'm dying, but I was thinking maybe this medicine team sees something, and I don't. It's just been very depressing lately, especially spending 3 weeks in the hospital.

    But thanks, makes me feel a little better knowing it isn't the end :)

    Hugssssssss!
    ~Donna
  • lisa42
    lisa42 Member Posts: 3,625 Member
    glad to hear about palliative care
    Hi Donna,

    I was glad to hear from Phil and the other who chimed in too about palliative care not only being for end of life, but being for treatment for pain, etc. I wasn't aware of that so I, too, am glad to know this before any of my doctors might mention it.
    I suppose when you get over the fear of the term "palliative", you can be glad that you'll hopefully get some good pain relief.
    Keep the chin up- as hard as it is (and I'm experiencing that difficulty myself), we MUST keep going and keep going with the positive attitude. You can do this, Donna. We're all pulling for you here & I'm praying for you.

    Blessings,
    Lisa
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    PhillieG said:

    Palliative care
    Donna, this is off of the internet, wikipedia.com

    Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. It should not be confused with hospice care which delivers palliative care to those at the end of life.
    -p

    Yup
    I looked it up too, like Phil did. I saw exactly what he just quoted above. Don't get the two confused as they said. It is not the same thing.

    Hugs! Kim
  • snommintj
    snommintj Member Posts: 601
    lisa42 said:

    glad to hear about palliative care
    Hi Donna,

    I was glad to hear from Phil and the other who chimed in too about palliative care not only being for end of life, but being for treatment for pain, etc. I wasn't aware of that so I, too, am glad to know this before any of my doctors might mention it.
    I suppose when you get over the fear of the term "palliative", you can be glad that you'll hopefully get some good pain relief.
    Keep the chin up- as hard as it is (and I'm experiencing that difficulty myself), we MUST keep going and keep going with the positive attitude. You can do this, Donna. We're all pulling for you here & I'm praying for you.

    Blessings,
    Lisa

    a bunch of stuff to know
    You have a bunch of stuff going on in your body, oncologists do a good job when things go as planned or with mild set backs and deviations. When many different drugs and procedures are thrown into the mix you really need someone with the knowledge and experience in dealing with potentially dangerous interactions. The added Drs and caregivers may prove quite useful.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Sundanceh said:

    Not Your Time...
    Hi Donna

    Phil has already nailed it and V has confirmed.

    You've still got your treatments to do yet which should yield some results. The end is not near for you...my doc said it actually takes some time before one would pass - now this is not the case, but just letting you know, you are going to be here...and for awhile too.

    Your mind and body have taken quite a lick the past month from your blockage issue and the resulting surgery on the scar tissue and the port removal and re-insertion...right now you feel you are at a low point, because your strength and enery are not as high as you would like to help you combat the illness. The mind can work for you or against you.

    It just sounds like they are trying to get a team that can assist you in a more specialized way to ease some of your pain and to oversee your condition - you're not headed to a hospice.
    See what they have to say first, then alot of your fears & questions should be answered.

    I know words can sound "hollow" at times like these, but this is another step in your journey and you have many more chapters to write and tell us about. It's not your time to go anywhere now or in the future. Remember the fable "The Tortoise and the Hare?" The race is not always won by the swiftest - steady steps towards the finish line still yield the same victory!

    You are a tough gal and one day will be using this as one of your war stories when you help inspire others on what you survived.

    Rest your mind - when the mind is right, you can fight! This may be the biggest thing you can do is just rest, rest, and more rest. I'm sure you will see it in a different light.

    Everybody here is praying for you...and it's tough now, but will be so glorious when you overcome the odds.

    I'm going to pray for calm and peace to enter your life, so that you can be open to all of the possibilities that the doctors present to you. Life is very precious and you have much to live for - your daughters have the same beautiful spirit as their Mom!

    I'm sorry you are in such a quandry right now, but with everybody's help and your fighting spirit, things will work themselves out - you will see.

    My continued best to you
    -Craig

    Gee
    I'm glad everyone "fact checked" me on this.
    I'm notorious for making things up just to mess with you all.
    Just kidding. I'm not always right. One time I thought I was wrong, when in fact I was right!

    I would always double check me or anyone else on the board, how many times have we gotten emails that say "I know this is true because a friend of a friend of a friends cousins cousin's cousin's saw it on Jerry Springer...." and it turns out to be false. We are people, we make mistakes
    :-)
    -p
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Shayenne said:

    Thanks Friends....
    ....No, my liver scan didn't come up clean, I still don't even know my results to the 2nd CT results, since the pain started the day after my scan, and then I admitted myself to the hospital on July 4, I think Beth meant my first scans, when they showed that the chemo was killing was most of my cancer, which I hope it still is!

    I only have 5 treatments left, and it seems that something always happens in-between these treatments, which I'm afraid is making me go off track :(

    I still have fight in me, I don't feel like I'm dying, but I was thinking maybe this medicine team sees something, and I don't. It's just been very depressing lately, especially spending 3 weeks in the hospital.

    But thanks, makes me feel a little better knowing it isn't the end :)

    Hugssssssss!
    ~Donna

    Keep fighting
    Donna,

    I'm sorry you've been getting so scared and worried. I'm sure I would, too, in your shoes. I'm just naturally a worrier. In your case, though, it really does sound like they're trying to help you manage your pain and get stronger.

    Try to relax as much as possible, and you'll regain that fighting spirit.

    *hugs*
    Gail
  • dorookie
    dorookie Member Posts: 1,731 Member
    Hey You
    Arent you from like NY? from the sound of your voice I wouldnt mess with you and I am 6ft tall. You are a fighter a NY fighter and not even cancer wants to mess with you girl. I live with a NYer and you gals are tough and very stubborn, your not going to let something like this take you down. I believe in you donna, and you my friend and I want and need you around for a long time, not to mention your family. So back on the Positive wagon and lets getting up.....

    Love ya
    Beth
  • Shayenne
    Shayenne Member Posts: 2,342
    dorookie said:

    Hey You
    Arent you from like NY? from the sound of your voice I wouldnt mess with you and I am 6ft tall. You are a fighter a NY fighter and not even cancer wants to mess with you girl. I live with a NYer and you gals are tough and very stubborn, your not going to let something like this take you down. I believe in you donna, and you my friend and I want and need you around for a long time, not to mention your family. So back on the Positive wagon and lets getting up.....

    Love ya
    Beth

    Yeah...
    ...total NY'er here, and still have that horrible accent lol...

    I am still trying to think positively and believing I will be here for a long time, I had a long talk with my hubby, well, trying to talk to him hurts, about what I want after I die, and he still hates or doesn't even want to hear me talking about death, my life is now moving on, this wwas a really bad setback for me, which made me realize, I may not have made that...it's scary, those trips to the hospital, it just makes me think "this is it, isn't it?" each time.

    I Have to just start refocusing on my mind on other things, I am usually upbeat, and very positive, but this has thrown me for a loop, and have been getting on alittle on the down side, more scared now, but I will pull myself up from this hole as usual, and not stay this way, just taking deep breaths now...

    And I will my darling friend, be here for awhile with you!I still have some hope left in me :)

    Love ya and Huge Hugssssss!
    ~Donna
  • eric38
    eric38 Member Posts: 583
    Shayenne said:

    Yeah...
    ...total NY'er here, and still have that horrible accent lol...

    I am still trying to think positively and believing I will be here for a long time, I had a long talk with my hubby, well, trying to talk to him hurts, about what I want after I die, and he still hates or doesn't even want to hear me talking about death, my life is now moving on, this wwas a really bad setback for me, which made me realize, I may not have made that...it's scary, those trips to the hospital, it just makes me think "this is it, isn't it?" each time.

    I Have to just start refocusing on my mind on other things, I am usually upbeat, and very positive, but this has thrown me for a loop, and have been getting on alittle on the down side, more scared now, but I will pull myself up from this hole as usual, and not stay this way, just taking deep breaths now...

    And I will my darling friend, be here for awhile with you!I still have some hope left in me :)

    Love ya and Huge Hugssssss!
    ~Donna

    Donna - Still plenty of battery juice left.
    When your body is down it does affect you emotionally but you will be around for a while. Like Craig says, there would be signs in your body if you were at the end of your life. You would probably know it instead of worrying about it. You`ve still got lots of life left in you. Tell the hubby he`s not going to have to worry and neither are you. The whole experience is scary but you are a strong woman.

    Eric ( : . )
  • trainer
    trainer Member Posts: 241
    Shayenne said:

    Yeah...
    ...total NY'er here, and still have that horrible accent lol...

    I am still trying to think positively and believing I will be here for a long time, I had a long talk with my hubby, well, trying to talk to him hurts, about what I want after I die, and he still hates or doesn't even want to hear me talking about death, my life is now moving on, this wwas a really bad setback for me, which made me realize, I may not have made that...it's scary, those trips to the hospital, it just makes me think "this is it, isn't it?" each time.

    I Have to just start refocusing on my mind on other things, I am usually upbeat, and very positive, but this has thrown me for a loop, and have been getting on alittle on the down side, more scared now, but I will pull myself up from this hole as usual, and not stay this way, just taking deep breaths now...

    And I will my darling friend, be here for awhile with you!I still have some hope left in me :)

    Love ya and Huge Hugssssss!
    ~Donna

    Noo Yawka? you got a problem wit dat?
    Fuggedabout it! Ohio must be quite a shock, then.

    Notice my scowling 5 year old face as my parents made me pray for the photo. Now, I cheerfully pray long and often, so you were part of those prayers. Don't make me come over there and scowl at you today, so buck up, Ms. Buckeye! You're surrounded by friends and loved ones and your friends on this board are pulling for you. Just keep Is. 40:31 in mind. Read it sometime. It's s brief phrase and it sure helped me get through the rough spots.

    Nice having you back.
    Mike