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Do I have to go to Hospice to get help with cancer pain?
As a cancer patient should I be forced to end my life because my doctors can't control the severe pain. I've been suffering for almost 2yrs now. They're saying they can no longer help me.I just know there's a doctor somewhere.im taking high doses of pain medication I know it's something else besides pain pills please I have a 4yr old who needs her mom It's not Cancer that's killing me it's the pain from Cancer please if your out there help me.
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@colleenyoung I'm with Palliative care but they're saying they can't no longer help because of the pain pills I'm needing to manage my pain they can no longer provide so they're suggesting I switch to Hospice Care why they want help me find other Specialist that's not dealing with pain pills nerve block anything please just don't make me end my life my 4yr daughter needs me I'm so scared my Cancer is responding to Chemo treatment it the pain that's the problem I'm forced to stay in bed because of the pain I can't sit up in a chair sofa or recliner for more than 5 minutes because of the pressure that's in my pelvis and vaginal area is there a doctor willing to help me please thanks everyone hopefully someone will help me
@gloria52
Do you know what's causing the pain? Is it the cancer? Is it something to do with the surgery?
This forum is a good place to look for sympathy from other patients, but there aren't any doctors here. If you mention where you live, somebody might recommend a doctor they liked.
To my mind, the other options are 1) going to a (random) doctor at another local hospital for another opinion, and 2) learning all you can about nerve blocks, when they work, when insurance will pay for for them, etc. Then you can try to convince your current doctors to give you one by showing that you know that it is a realistic option for your situation and is something insurance will pay for. People on Mayo Connect may have experience with nerve blocks and what they had to do or say to get one. It might be worth making a new post on the "Cancer" forum asking specifically about nerve blocks.
A previous poster said he hoped that "the right medical help will find you quickly", but unfortunately, medical help is very unlikely to find you. You have to be assertive and go looking for it yourself. And it probably helps to act logical and rational rather than emotional and desperate, even if that's how you feel.
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5 Reactions@gloria52, I'm so glad that you are in the care of palliative specialists. However, I'm wondering if there is some mis-communication happening. It sounds like your pain specialist in palliative care is suggesting that the local hospice facility to help with your pain. Sometimes hospice facilities have additional pain management options. They are not sending you there to die. And no one can force anyone into hospice if they don't want to go.
I encourage you to talk with your palliative care doctor and get a clearer understanding of the situation. You might ask questions like:
- What pain options are available in hospice?
- Are they only available in hospice? Why?
- Can my daughter and family visit me while I'm in hospice?
- Will my pain improve after treatment?
- Why do you think hospice is the best option?
Gloria, I'm very sorry that this is happening to you. I know you are in a lot of pain. You're also very scared. Scared for you and scared for your daughter. This is not how you thought life would be. It is nearly impossible to think straight when you are living with such pain. Keep asking questions so that you can feel more comfortable with the choices you need to make. It's so hard.
Have you thought of asking about a cancer social worker to help you navigate things between you and your doctors? Are you being treated at home or in the hospital?
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7 ReactionsYes I am very scared of what's going on.I just want to receive the help I
need Because right now I'm truly suffering mentally emotionally and
physically. All I can focus on is the pain and my 4yr old.But tomorrow I
will talk with my Palliative team and not be scared thanks for your support.
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1 ReactionYes I have a Cancer mass in my pelvis that can't be removed because of it's
attachment and location the pain is from the mass and the Cancer
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1 Reaction@gloria52 Just one more suggestion. Please be sure you and the doctor meantime same thing when you say "Hospice." Hospice doesn't necessarily mean moving to a facility. Hospice care, which concentrates on providing you the best pain management and quality of life for you situation, can also happen at home sometimes. Both our very good friend and my Dad had home Hospice, my Mom was in a dedicated facility because the place she lived thought it would be disruptive to her neighbors.
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4 Reactions@dave56pa thank you I sure will talk to them God Bless keep fighting
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1 ReactionThis is so sad and frustrating to hear, you shouldn't be forced to choose to give up fighting and treatment just to receive pain relief. I have experienced pain that was bad enough, that I was faced with those thoughts you mentioned, of considering ending it all. It's a very frightening and frantic place to be and no one should have to live with that level of pain. As others have mentioned, it would be worth trying to find out more about the hospice option, if you could continue the treatment and fighting to live, while being switched to hospice care. It may very well be possible to continue on with the chemo and treatments, while also being classified under hospice, to receive better pain management options. Also, try to find out anything you can about finding a social worker who specializes in cancer. I had one through my local hospital, who was very helpful with me figuring out what options even existed. Maybe there is a second opinion you could seek as well, from a different doctor or cancer center?
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4 ReactionsCan you ask for a case manager who is able to maneuver through the labyrinth of arcane obstacles? I know after my lung cancer surgery, I refused to leave the hospital on day of discharge without a case manager to provide and oversee my pain management and wound care since I could not physically reach the wound.
Unfortunately they love to act as if you are a squeaky wheel and you must ignore that. I refused to leave my hospital Bed until i had a doctor’s order for a case manager.
So call your doc's office and tell them you need a case manager for home/hospice pain management.
Hopefully you will be successful …
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5 Reactions@pb50 Thank you for your help. I'm new to all this and your advice is a great help I never thought about of that because when you don't know you don't and when your depressed you can't think straight so again thank you for your help may God continue to bless you. I just want to be here for my 4yr old she needs me. But I will let you know what I find out.