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Venting I guess

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

As I've mentioned, Hospice keeps being brought up to me. I don't understand it. Other than being really sick for the past month due to a respiratory flu, which my son also is battling for a month a he does NOT have cancer. It's a really bad bug!! Other than the major down time for that, I am normally getting dressed, getting out of the house. Putting on make up and looking "normal". No one has any earthly idea that I have end stage cancer. In fact a service guy at my house looked very shocked when I mentioned that I was told I needed hospice, I had to talk to him about a long term contract and if I needed to stop it. People look really shocked and amazed.

I've seen the scans, I know what my doctor says about me. But this is the 3rd person, one being my "shrink" that is suggesting Hospice for me. I know I have depression but who wouldn't? I also have a VERY difficult family that is not making things any easier for me. So that drags me down a lot. I am wondering if I am giving off the vibe that I've given up? I don't think that's true. Do these people know something I don't? It's very frustrating to me.

I know me and if I started with Hospice, I don't think it would help my depression or outlook on life. I am well versed in Hospice, I actually worked as a Hospice nurse, I'm very pro Hospice but I never remember starting with any patient that looked like me, was out and about and going shopping, etc! It's just strannge to me.

Sometimes I get the feeling that the world is tired of dealing with me and they want me to just go ahead and give up and pass on. I know that sounds warped. Family does not help this feeling. My therapist is not helping me with this. I have not seen her lately, I am due to see her today. Being sick for a month after being in Hawaii for 10 days was the cause of that. When I tell her things she just smiles and nods her head. This is the second therapist I've tried.

Oh well, feeling like a train wreck today. I am supposed to start chemo on Weds and am fairly terrified of that. It is not really what I want to do but I think if I don't, I don't have much of a chance.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That sounds really odd. I'm in a cancer support group and we are loosely associated with the local hospice society. I remember them saying once that hospice isn't just the last stop, it can be temporary, but I can't remember why.

Why would they think anyone would be better off in that kind of environment and not in their own home? I'm quite taken aback that anyone would suggest that to you. I agree that that's the last thing you'd want to do. When you'e independant why would you possibly need it? Very strange. I think it would bring your positivity down faster than anything else that could happen. 

I'm sorry your family is not being supportive. That's really sad. I feel so badly for you. What a tough position to be in. 

Hugs,

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 879
Joined: Apr 2017

I know in the world of science, anecdotal evidence does not count for anything.  But here are two cases that I know of.  The mother of a friend was diagnosed with stage 4 colon cancer and given less than six months to live.  They put her on hospice.  Her hospice benefits ran out, and she was doing fine.  She did not have any additional scans, but her CEA levels returned to normal.  She went on for three years of normal life, finally passing in her mid-nineties from a flu.  

Another woman I know is in her mid-eighties.  She has had several bouts of cancer and was diagnosed with lymphoma two years ago and told that, with chemo, she had six months to live.  She elected not to go on the chemo.  After six months, she asked the doctors why she was not dead.  They told her, "oh, I guess we were wrong, you must have the slow-moving lymphoma, not the fast moving lymphoma."  This Summer she is driving cross-countly with her husband and has no ill effects of symptoms of cancer, other than catching colds easily.

These stories prove little, other than that there are exceptions to the rule and doctors do not know everything.  My philosophy is to take each day as a gift and live it to its fullest.

I hope things brighten for you soon. 

 

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

You know "you".  Don't give up because others say that's what they think.  Only you can determine your stamina, your drive, your mental state for wanting to get up and go.  Do any on these people that say this to you just know you went on a Hawaiian vacation and did all the site seeing and eating and the long trip it entailed - most of them probably would have complained about the jet lag getting back, but you just kept going.  I'm proud of you.  Keep up the great attitude and keep marching forward and don't EVER let them bring, or tie you down.

Kim

Butt's picture
Butt
Posts: 299
Joined: May 2018

I do not think when a person who clearly functions need to go to hospice. Hospice can also be stopped. They bill hospice services monthly by count days when they were visiting. In my insurance it is 720 days of hospice coverage when hospice people are invokved that may be in the beginning only 10 days a month. I always thought that I would be able to move to hospice house when I start going downhill and spend there 2 months or so. Wrong. I went to the local hospice house and talked with them. They taje folks when death is imminent for the last week or so. They will visit you in a house, assisted living facility. There must be someone who must take care if you in those last 2-3 months or so and it is not there problem. I put documents on file with the local health care agency. 24-7 care is 17k per month. The issue is that many of those caregivers prefer to sit in a couch or  do A Facebook all day long. Someone needs to monitor what they do. I don t have any family in the US. I have a good friend with elderly mother with a solid denentia. She is in a nursing home. They don’t do their job and the family had to hire the private caregiver who sits next to her bEd. Someone needs to keep an eye on whats going on when you are very physically sick and your mind is off. Due to the fact that Karen indicated that there are issues with the family I am concerned in who will keep an eye on her and do proper coordination of neccessary activities.,Butt.

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Who you are is a mental game you originate, not what others see you to be, so go with your image. Feeling strong is part of being strong. I've had some weak moments along my path, but when someone stated I was not well, I was shocked by it. I worked through all of chemo, and as soon as I could lift anything after the three cancer surgeries. I pushed it out of need, but also because I wasn't letting the bast*rd get me down. We are all different, and our fight's are not the same, but if others are selling acceptance while you're not ready to give in to that POV, by all means challenge that idea, and carry on the way you feel is right, it's your life..................................................Dave

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Since you are getting advice which you don't agree with, I would ask...why do you think I need to go on hospice?  What is it about my condition that makes you recommend it now rather than later?  See if the answers bring you any clarification.

Worth time and effort to get clarification for both you and your doctors.

Marie who loves kitties

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I appreciate so all your replies and all the very inspirational thoughts. Things have been crazy hectic and still battling this lingering virus and etc. 

Still sick and I can’t imagine that it’s a good idea to get toxic chemicals dumped into my body right now, unless of course I just wanted to speed up my demise...that’s how this feels, so I’m going to have to postpone starting chemo this week. I’m really worried that they will get angry with me for cancelling last minute, I hope they understand and don’t write me off. 

Whatever happens in the next 2 weeks, I will not be signing up for Hospice at this time. 

Thanks for your heartfelt responses. 

Karen

abita's picture
abita
Posts: 608
Joined: Dec 2017

They won't get mad. In fact, they might have delayed the chemo for your sickness. They want your body to be able to dight.

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

You just need to get some of your strength back to start treatment if you want, and if you don't want to put more chemicals in you, then you don't have too.  This is what you decide now.  Hope you feel better soon.

Kim

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