Time for hospice and Im really scared
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Oh my, I was in Key West last weekend and found Duece has apparently opened a restaurant. It was right across the street from my B & B on Simonton and it's called Duece's Off the Hook Restuarant. I wasn't in town long enough to visit but boy he gets around.
And from the looks of the restaurant reviews, he's a pretty decent cook.I hope your onc's office calls you back Teri. There's no excuse for not returning calls. I hope your breathing issues resolve soon.
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Afternoon Teri!
What a pain to not get a call back! That is such bad manners regardless of any circumstance and I would definitely keep pushing until they give in and return the call.........what is it they say? A squeaky wheel gets the oil? Keep at it, you deserve an answer.
I'm trying to work out just what clothing to take to the city with me tomorrow as I'm not sure how long I will be there........it could be just over night or two or three nights depending on what my doc does regarding scans etc.......sigh!.......I guess I'll just have to pack for the worst case scenario then all bases will be covered.
Hoping you are feeling okay.........oh, I love it when you find enough energy to check in!
Love n hugs. Chrissy
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Teri - You most certainly do deserve some answers. Push for them, or have your relatives do so if you are not up to pushing. Something's causing your breathing problem and something else might help alleviate it.
Your suspicion that your being in Hospice care might be why you are not getting calls back from your oncologists may be accurate. I found that when I brought my mother to the hospital after a major stroke and explained that she had a Do Not Resusitate form it seemed as if everyone there took a step back from helping. I did not want active resuscitation because I knew that was not what she would have wanted, I just wanted pain medication for her and getting it was slow until I got irritated and told a nurse in no uncertain terms that a DNR order was not also a "do not give pain medicine order". I have decided that I will rewrite my health care directive to be sure that a request for pain management is clearly mentioned in the same sentence as my Do Not Resusitate directive. I just have to get around to doing it …
You have a right to know what is going on, what is affecting your breathing, and what might help you be more comfortable.
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AmyQ, I can't believe you found Deuce! In Key West no less! I'll have to book a flight out there. (Hell, I can't even type!) Lol.
Teri
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Teri, as soon as I stepped outdoors and saw the sign I immediately thought of you and actually laughed out loud. He's one smart goat living in warmer climates and enjoying the tourists.
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That is so uncalled for with your onc's office! Everyone deserves a call back from anyone when they are a patient. Just because you chose to enter hospice does not mean he/she cannot help you. I remember a friend of mine from years back that was in hospice with the cancer eating at her lungs affecting her breathing. She was given Xanax and/or Ativan, whichever one she felt she needed. It did make her sleepy but it relaxes your body so you can breathe even though the cancer is acting up in that area. Not sure if your onc or hospice team has done that for you.
I don't post much here but I do read the post and pray for you. It was nice of your family fo decorate for ;you and can understand when you say why couldn't they be so nice when you were well. My son and his gf went off on me yesterday because I was shoveling a little snow off the sidewalk. It was nothing major, it just pushed away because of the ice melt and sun beating down on it yesterday. My son came flying out yelling at me to stop shoveling. I told him I am not an invalid and I walked out there because his son told me he got sick on my porch from the long drive back home from his mothers. I found out it was at the bottom of the driveway and put snow on top of iit to help wash it away. While he was flipping I said I wouldn't have been there if he paid attention to his son telling him he got sick instead of just saying ok and being so engrossed in his football. Then he said you have cancer and you can't shovel! I told him like hell I can't and don't tell me what I can and cannot do in my own home! It just gets you when someone decides you are sick and when you are sick they tell you to get out of bed. I don't get it......
In spite of your lack of phone calls I hope you had a wonderful new year's and let your onc's know we are all going to stomp his door down if they don't call back and help you out!
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Evening Teri! I do so hope you are doing okay today..........and of course get a call back from your onc.
I am in the city at my DD's house ready for the round of doc appointments tomorrow.........hopefully I can get a few answers to my questions.......lol........some docs are really good at avoiding.......lol.
The drive down was uneventful........lovely weather, cool but clear so the fields looked wonderful in all their golden glory. The harvest is almost complete and hay making has already begun. The sheep have been shorn and the lambs are growing fat..........the flocks of galahs are everywhere cleaning up the grain that has been dropped by the transport trucks and their young are beginning to fledge but are still begging to be fed. The correlas are beginning to arrive in from the outback as well as the sulphur crested cockatoos ready to feed on the ripening pine cones and other nuts before heading back in the autumn. It's truly amazing what you see while driving a quiet highway.
Love n hugs. Chrissy
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Good morning Teri! Hope that today brings a call from your onc, little pain and relief from the shortness of breath you are experiencing. That Deuce is one smart goat travelling to the warmer climates - certainly can't blame him there. We are in the midst of another cold snap with blizzard warnings - Yikes! Can't ever remember a blizzard warning being issued.
Chrissy - sure wish I was with you in Australia - would much prefer the harvest season to the snow that is coming down in buckets here!
Happy Monday to all.
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Good morning, Teri. Hope you are keeping warm. Am SO glad to hear that wild goat of yours has finally decided to share his talents with the world! My mom just went to Key West last month, wish I had been able to go with her. Sounds like a fun place!
LuAnn, you may not have intended your post to be funny, but I was cracking up over the way you described the family "caring and concerns" as you captured perfectly that dichotomy between family wanting to take care of you but only doing things THEY want to do for you, expect you to play the sick role and be passive, but don't whine too much, do get yourself pulled up by your bootstraps and fight this thing, etc. Your little rant just tickled my funny bone big time and I got a great belly laugh, especially as I imagined certain of my own relatives in the roles you described! Thanks!!!!
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Capri- If you want your oncologist to call and discuss new options with you, then I hope he does. Good luck with your decisions. Stay warm! Nice that Goat made it to Florida.. he's a snow bird!
To all the folks in the Midwest and East Coast.. stay warm and don't work too hard shoveling! I have lived in Conn., Rochester NY, Indiana and PA... so I feel for you all!! The pictures just make me shiver!
I have asked for hospice care and will get it tomorrow. Peace and resolution in 2014 to crushing fatigue, blood transfusions and feeling out of breath and feeling quite sick of it all. It will be a very quick and I am thankful for that. Best to you all in 2014. Cindi
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Cindi - I will be thinking about you. I wish you comfort and ease and peace.
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Teri, I hope you are getting answers to some of the questions you have.
Cindi, I wish you peace and comfort. I will be thinking of you.
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Cindi, hospice is a godsend. I hope you get out of it all that I have been given. Peace and love to you.
Teri
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Deuce in Key West! That goat has got the right idea!
Cindi - I always enjoy your warm and intelligent posts. I wish you peace and comfort in this New Year.
What an extraordinary group of women.
Love to all...
Rose.
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Teri, I hope you get a response very soon and that they come up with something to help you.
Cindi, I hope that hospice gives you the comfort and support you deserve.
Thinking of you all with the cold weather you're getting. Here, all we've had for weeks is rain!!!!
Nicky
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Good morning Teri - lots more snow here today. Still not going anywhere as the whole county is basically shut down - no open roads. Plows were even pulled off roads through the night. Hope you are able to get some help with breathing and that you can stay warm and comfortable.
Cindi - thinking of you and praying that hospice meets your needs and keeps you comfortable.
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Capri,
I just wanted you to know that I have been following your posts and sending my very best to you and yours. I'd send you strength and a lung-full of clean air. I am sending cyber hugs and prayers.
Linda
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Capri, I hope you've heard from your onc. with a plan in place. You deserve to be comfortable.
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Bon, what you posted is exactly what I would want to say but I don't want to sound needy. So thank you for saying it. I would love to get the input from all the women on here. But maybe I need to post on the SOB forum.
CafeLovr, I'd even take a lung full of dirty air if I could just breathe it on my own without the "nose hose." I tell you, I know exactly how a dog on a tether feels. I've always been against tethering dogs but now I know first hand the reason why!
Well I hope everyone is having a good Tuesday (or whatever the day is in Australia for you Aussies)
. I'm going to go watch a little TV now and let my brain rest.Teri
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Hi Teri! It's Wednesday here and today I will be tethered to the radiology department of my treating hospital.........lol.......getting loads of scans as well as WBBS to check what this little bugger has been doing in my body........hopefully we will get some positive answers by this afternoon.
Take care and stay warm!........we see on the news just how bad that freeze is.
Love n hugs. Chrissy
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Hi Terri
I hope you get some answers soon.
At least we know were Deuce is. he had the sense to escape the weather.
Cindi just wanted to say hello and send you a hug
Mara x
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Hi Terri, know what you mean about the nose hose lol. I loved it in hospital,but. Wouldn't want to be tethered at home. Its been very hot here since i got out of hospital and have the airconditiiner running day and night as u watch the terrible cold weather in the States, it's crazy!
Ive had to go outside and spray our cockateil with cool water,she just loves it. Been minding my sisters toy poodle while she is on holiday and i became mum and he would bare his teeth and growl if my son came near us. Then i was in hospital for 5 days and he would sleep with my son and love him, and now in home,back to baring the teeth lol. My lungs are so sore from clots if i sit and raise my arm, i can breathe better, hey you take what you can right! I find having heavy breasts does not help at all and if i lift them i get relief. I spent 100 dollars on a,new bra i cant wear and need to get a pull on crop top type one, although hard to get a good fitting one when i am si broad across the back. Cindi, i hope you find great relief and peace with your time in hospice. Love Gail xxxx
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hey there!!
Just wanted to say hi & that I am thinking of you..
Trouble with breathing is HARD.. Hope things get resolved soon..
Hugs
Ebru
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Teri,
I'm sorry I've no words of wisdom to add, nothing I can think of to make things easier for you, other than to say I'm here. If i do hear of anything I'll be back like a shot to let you know. In the meantime I hope you found something good to watch on television and that it helped you time out for a while.
Chrissy, I'm thinking of you. Hope the tests aren't too stressful and they come up with some answers that can be dealt with easily. I'm watching and waiting to hear how you get on.
Cindi, how did yesterday go? I hope you're finding the support you wanted from hospice and that you're able to relax, as pain free as possible.
Nicky
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Bonnie, what a wonderful idea , and a lovely person you are. Love Gail
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Checking in on Teri and Cindi - hoping for low-pain and low-distress days.
I just had nearly a quart of fluid drained from my lungs and my breathing has improved tremendously!!!
I believe Cindy-Rose actually went off hospice for a brief time when she was feeling better and doing some more treatment, but was accepted back into hospice within a day of requesting it when she made the decision to discontinue further "curative" treatment. I think that was over a year ago. She was such an inspiration here, and I learned a lot from her, and was privileged to walk part of her journey with her last year. And I feel privileged to walk with Teri and Cindi and all of you who are traveling this path.
I have been reviewing the little "handbook" for medical residents and students on palliative care and hospice service, and here are some of the things suggested for dyspnea (shortness of breath) - most of it pretty much in line with what Bon said above.
General: oxygen (yeh, I know, a royal pain)
Environment: cool humidified air, circulating fan, sitting upright or slightly leaned back to expand chest and abdomen to allow fuller expansion of lungs.
Reassurance: Relaxation techniques, breathing exercises, music therapy, aromatherapy
Treat anemia if present and indicated
Specific meds for asthma, COPD, lung cancer, congestive heart failure, infections - need to be evaluated for these
For thoracic or lung compression from tumor: morphine, possible radiation therapy
Effusion: drain it!
Anxiolytics: lorazepam, diazepam, etc. can be used to relieve the anxiety that goes with the feelings of breathlessness, especially when used with other treatments.
I did NOT find any new meds that would be considered "curative" to treat shortness of breath, but I suspect any new chemo or chemo trial would fall into this category, so there may be a new drug out there that could shrink tumor if that is what is causing the breathing problems. I did NOT find anything that was helpful for cases where the lymph vessels of the lungs may be involved.
Sending much lovingkindness to each of you tonight and will try to check in tomorrow.
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Teri
Bon & Linda already gave some great advice all of which worked great on my not so better days.. Bon I still lay on my right side with bent knees...
I found out luckily in time the pulmonologist is NOT to just drain the effusion..especially one teamed up with a MO may do wonders, at least mine did back then..
OK I wasn't in hospice, but mmm, sorry no better way to say it, practically dying, when I was hospitalised.
My two cents would be to add a cardiologist to the team, if not already done so.. They have great stuff for temporary relief, as the heart is the captain of the ship, right?
And know what, honey? You know what's best for you, listen to your body closely and keep translating your needs to the docs!
Hugs,
Ebru
Edit: I was able to use an incentive spirometer for breathing exercises, way later.. But coughing a couple of times, bending towards your knees (if you can) and I know it hurts, did help.. İf you can do so, KEEP WALKİNG, a few steps at a time. Wish I could flashtravel you to my house in Mount Ida, premium quality oxygen there.. Please please spend time outdoors, if not near a factory of course.. Thinking of you.
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Afternoon Teri!!! Any word from you onc? Sure hope you are managing to breath a little better with some of the ideas the girls have been posting......very little bit helps. At night I have a fan aimed fair and square at my face........it seems to help me breath better when I lay down.......could also be my imagination but I don't think so.
Anyway, had a boring day sitting around with my DDs dog while I wait to see my doc again tomorrow so I went and got some wool and a crochet hook and started a snowflake afghan........should look okay when I'm done and in the mean time it keeps me out of mischief........hahahaha! Can you imagine, an overweight, over sixty, woman who can't move very fast or well getting into mischief? Well imagination can be a wonderful thing.........hahahaha!
This is it so far.......don't know why it went all the way to the top of the post, but I guess you can still get the idea.
Hoping you have a good day.
Love n hugs. Chrissy
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Teri, I hope you've heard from your doctor by now. If not, maybe have someone from hospice call him?
http://www.webmd.com/balance/features/how-to-breathe-better?page=2
Some yoga breathing exercises in the link above. Also wondering if a CPAP machine which they use for sleep apnea might help. Perhaps if you see a pulmonologist or cardiologist they could prescribe this for you. You might be able to see another specialist faster than your onc. It seems they also use the CPAP machine to help babies breathe whose lungs haven't developed enough.
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Teri - I say if you haven't heard from your onco by now, post the number here. We'll get you a callback!!
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