#86 Another Hospice?


Everyone already knows what happened the last time that I let a hospice team take over my care, but now my doctor says that I’ll need to be on hospice to get some of the things that I need that my insurance won’t pay for, so I’ll give it another shot. I’ve already told these new people that I’m not going to give them control over how I live because this is my life not theirs. I made it very clear that I won’t allow any doctor or nurse to talk me into taking any medication that is going to make me tired or sleep more than I do now. The whole point of me getting hospice to begin with was so that I could feel better not worse. I think I have a long time left on this planet and I don’t want to miss any of it just because someone else wants me to take whatever they think would help me when I already know what works for my body. I have found myself explaining to people again that going into hospice care does not mean that I’ll be dropping dead any time soon. They do whatever they can to help those who can get better find their way to get some normalcy back in their life. No, I haven’t given up and no I don’t have a death wish. They are supposed to help me get whatever I need to be healthy and happy for as long as possible. From what I’m told people who go into hospice earlier in their disease do better and live longer than people who wait until their nearing the end of life. Let me say this one more time. I will not be dying anytime soon. I have a lot more time left but I do need help with some things that are only covered by hospice and not the regular insurance. I’ve been told that I tend to say things I have cancer or, I have lung disease with the same amount of emotion with which I say I’m hungry, or I want to re-pot my new plants.  So what? I don’t feel the need to be a crying mess all the time and I can’t just ignore the fact that I’m sick, so how would anyone in my place talk about these shitty life circumstances of mine. I think that I’m doing very well. I do cry sometimes in the morning when I check in on some of my new bc friends and find out that one of them isn’t well or is gone. That really hits home for me, but I’m nowhere near being that bad off myself. I keep telling everyone that just because I’m as advanced as I am does not mean that I have given up on having a good life. I do wish that my life included going back to Hawaii with Rick for a little time off from reality but I think that I’m doing quite well these days, all things considered.  I do have some new plants to re-pot and I have everything that I need to do that. I usually do my potting outside though and the weather isn’t doing my lungs any favors. It’s so humid here these last few days that I can only go outside for a few minutes at a time before I’m soaked in sweat and have to turn around and go right back inside. Rick and Jesse tried to get me to go swimming with them yesterday but I think I’ll wait for the weather to get back to normal so I can breathe long enough to swim. I’m meeting my new nurse today and hopefully I can make it more than clear to her what things I’m willing or not willing to do as far as my meds. I think I do very well with what I take now because I’m still able to function after taking them. I decided to sign up for a program that will pay someone to come and help me to keep up on my house work, and since I have Diane who does that for a living I’m going to try to get them to just pay her to come and help me out. She already knows my house and me well enough that I wouldn’t need to tell her what needs to be done and we’ve been best friends for over twenty-five years so I’m comfortable with having her here. It would definitely  give us more time to hang out together and when she’s here I’m more motivated to do more things on my own as well. I figure it’s a win-win situation for both of us. Rick has been trying to help out with the housework but I still want to be able to do more of it myself. I started singing again and that always makes me feel better but I can’t hold a note as long as I used to be able to, so I’m going to see if a little practice might help me with my breathing. Rick has also been buying more of the foods that are on our diet so now all I have to do is find some kind of exercise to do and I can get this weight back off of me. I was feeling so good about being thin and then I went and ruined it with M&Ms. I’m totally paying for that few months of going to town on bag after bag of M&Ms but I’ve been craving chocolate and sugar really badly. I just can’t let myself do that anymore. I do still have a single serving bag in the arm of the recliner (in case of an emergency) but I only eat a couple and then put them away. That way I don’t feel those cravings all the time and I get to indulge just a little bit. so is my life good right now? Yes…it’s pretty good.

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5 thoughts on “#86 Another Hospice?

  1. Hi Cindy, sounds like you have a better idea about the hospice. Today I can hardy do anything and yesterday I stayed in the garden with puppy as we had sunshine.
    My arms and legs feel very heavy and I’m tired but can’t sleep. In five weeks or so I will need rads for three weeks. I was thinking do I really need it if all the cancer is gone? I know it’s good for catching the stray buggers but I really don’t want it. Is it going to help keep the cancer away also I’m going on a drug for five or so years.
    What does one do? Will I worry if I don’t have rads also I know the docs will be angry if I don’t have it.

    • Ali, Only you can answer those questions. I personally refused any rads but then again I refused chemo too so it’s going to come down to what you think is best for your body. If you think things over and talk to your doctors and then decide that you are too afraid of rads then you’ll have to make that decision for yourself. Just remember that you are the one who will have to live with your decisions, and there may not be do-overs. I wish I could help with your questions but I don’t think I’m one to give advice on treatments seeing as though I’ve refused any myself. Whatever you decide is right for you should only be decided after you have all the info you can get your hands on as far as the pros and cons of deciding either way. Make sure that you can live with whatever you decide to do. It’s your body. Only you know what’s best for you. I am happy to see that your not just blindly following what doctors suggest. Sometimes they do get a little bit eager to treat whether or not it will help. Please ask more questions.
      {HUGS} cin

  2. Hey, Cin (aka My Sunshine =0)
    I am glad you’re talking with another hospice group -and we learn best through experience! So now you know how to tell them this isn’t you wanting them to numb you to the rest of the world, you just need some management of your care -including getting the housework help program. I am sooo very proud of you!
    I also am glad Diane is close for you -I wish I were, too. But, life is what it is. I’m working on changing my situation financially so I have more options (for visiting family like I’ve wanted to for 20+ years). I know you are in great hands & that you know how much I love you.
    As for your “lack of emotion” about your cancer -> So what!!!! I agree with you. It doesn’t mean you are denying your body’s invader, it just shows you’re not hung up on it. I think it also could allow others the opportunity to talk to you about it without thinking it would always upset you. They can ask questions more easily -IMO!
    I love you as you are & how you’re dealing with this is beyond admirable to me. I wish I could be as gracious about something I’ve been through that aren’t nearly as rotten as cancer.

    Ali, I’m praying for you, Sweetie! I haven’t forgotten you all & the support you’ve given to Cindy.

    Love & Hugs!

    • Dearest Sister, Thank you for understanding so much without misunderstanding why I do and say what I do. I know it’s been continually difficult for a lot of people to know what is and isn’t OK to say to me. Too many people have their own ideas about what I should be doing for myself and forget that I’m the one who has to live with what I choose. Even though I never forget that so many other people are affected by my choices. it’s raining here today and it cooled off a bit so I’m breathing easier today. I am curious to see the new nurse today, I hope she actually hears what I have to say to her. The lady I met last night (intake nurse) was nice and she understood why I didn’t like the other hospice. She said that I should have an easier time with the new doctors and nurses.
      Thanks again, Love you, cin

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