Time for hospice and Im really scared
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Ladies, I already open a window for my shower, have a shower assistant who helps me wash, turn on all the fans, keep the doors open, sleep on one side with knees bent, etc.Great advice. Keep it coming.
Ebru, I was diagnosed an incentive spirometer and never filled the Rx. Maybe I should, huh? I had a wish to go to Turkey since the day I was born like maybe I had a past life there and had unfinished business. Hmmm.
Chrisy, that is GORGEOUS! Keep going. I would get carpel tunnel if I attempted it. And of course we all can still get into mischief. The only difference is we can smile sweetly to get out of it because the young pups that are the cops nowadays are afraid of hurting us. We remind them of their grandmas, Lol.
Time for my shower. My shower buddy just showed up. Love and hugs to you all.
Teri
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Dear Terri your unfinished business is maybe meeting a friend from here..
) Always more than welcome and as guest of honor any time you like.. İ hope to have proved a basic level tour guide, huh? 😳
Yes & yes!!! Go for that spirometer. İ was breathing out my lungs quite sometime to move just the first ball upto half level...felt so desperate.. İn 3 weeks were able to move the second one to the top.. Should admit was never fully successful with the third ball, but definitely felt the difference.. Worked for me, hope it does for you as well..
My son, 7 then, asked me " mom can İ play with your toy too??" Seeing me working with it so we bought another one for him and had tournaments which was quite fun after all..☺️ Of well you know.. The lemonade thing with the lemons you are stuck with..
Something's happened to me, İ am all quoting now😀
Oh, you have a shower buddy???? Makes my chemobrain imagination start working all of a sudden!!!
Hugs
Ebru
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I am in the waiting room waiting for an MRI and the last few posts are making me smile. The other people waiting are probably wondering what I'm looking at. Anyone else feel like they are stuck in a dark hole, unable to move while machine guns are going off all around you when you get an MRI? Thoughts of shower buddies will crowd out the battlefield thoughts while in the machine today!0 -
Romansma - I was having a PET/CT about the same time you were having an MRI - my thoughts were a lot more peaceful than machine guns!
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Romansma, I usually visualize being at a Stomp concert - they do all the percussion stuff on all kinds of objects, like garbage cans, wooden fences, etc. Lots of rhythm! Hope scans for you and Amy show something good!
Chrissy, LOVE the crochet work. I used to make baby afghans for my nieces & nephews until there were too many of them, so only the first 3 or 4 got them. My GM used to crochet doilies with such fine thread I could hardly see how she did then, and now that I am 30 years older, have even more admiration for her ability.
Ebru, I remember some of the photos you posted from your vacation, breakfast by the water, etc. I wish with all my heart that Teri could join you, and it would be so awesome if we could ALL meet up there! Well, in the meantime, we will just have to depend on each other for our stories and pictures, and enjoy all the sharing here.
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Hi Teri,
How are you today? Hope that onc has gotten back to you with some breathing help. the explanation of why you are having trouble breathing doesn't make much sense to me either! but then their explanations don't always make any sense, do they? It is just like Deuce to be on the beach in key west! No fool, that goat!!
Cindy dear,
I was sad to see that you have made a decision re: Hospice care now, but I do totally understand, and support your decision. It gets very old and tiresome here in CancerLand without a doubt. I am thinking of you and will be looking forward to posts from you too. I just hope that you will soon feel the benefits of no more treatment and the lousy side effects. Many gentle hugs.
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Teri,
Warm and peaceful thoughts
Nel
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I elected months ago to stop faslodex. The cancer came back - no surprise. I was in lots of pain in November and got percocet and then the pain subsided. I don't understand that, unless the cancer just ate the nerve endings. I have back pain and pelvic zings still. Then I was getting wildly lightheaded and my heart would just thump like a crazed salmon ready to jump the rapids. I got my PCP to check hemoglobin..6.5. I get a couple of units and felt better for about 12 days. Got 2 more units.
Then my husband wanted me to see an other oncologist. So I did.. I realize it is my own fault I feel awful, but enough with the SE. The oncologist recommended aromasin and afinitor, said I could spend a week and think about it. I told him I really needed some relief from the heart pounding and he checked my hemoglobin and we waited. It was 5.5.. no wonder I was Short of breath and wiped out. Anyway I see the labs, the left shift and the numbers and there is no bone marrow. I have been through this before.. I have watched my Grandmother.. etc.. So I got 2 more units and I will feel like a live person now and then in 10 days I will tank again.
I tried to explain to my poor husband that this is no kind of life. I hate being sick. I hate seeing him stressed and waiting on me. I hate feeling lousy most of the time. I don't like seeing the kids watch me tank.. revive and so on. My Middle kid has watched me through this whole process since 5th grade! She's a senior.. My 12 year old knows nothing but me being off and on in cancerland. I don't tolerate the meds worth a damn. I asked DH why won't you let me go to hospice and be free of this? It's been years.. can you see it clear to do it for me? Even if it isn't what you want? Can you do it because I want off this cancer merry-go-round? I think I may be winning my last race... even if it will never be popular. I tell you this because only you all will "get it." Although I feel guilty because all of you/ most want to head into any and all treatment available and I just don't feel that way. I want to be tree food for the huge Doug Firs in the forest near our cabin. Peace at last and a billion stars over head!
Sorry this is such a long post on Terri's thread... slap me! I love this thread too! it's so funny and off the wall. It's like life.. everything that gets thrown at you, all the potholes and bumps in the road ... laughed at and enjoyed. Teri has such a super attitude and the humor is wonderful. Good night all. Hugs. Cindi
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Cindi dear,
Noone slaps another here, because virtual slaps don't make any noise 😉. İn our country we call it the "Ottoman slap" when one really gets another pissed off.. To make your slap Ottoman, you open your arm as further as you can (which many gals with mastectomies & severe bone mets would really have a hard time to do) then you aim at the cheeckbone with your fingers of right hand and slap! İf the cheeck isn't swollen instantly, that wouldn't be considered a success at all... Another version is to stretch your arm to the opposite far end(even harder for some of us!) and slap with the outer side of hand.. And if the person is wearing any rings as the Ottoman autocracy used to(an example below), ouchhhh!!!
İ am sure you are selecting your favorite ring from above right now.. 😃 but wait these are for the guys.. Please accept the one below İ have selected for you as your virtual souvenier from here ☺️
This, my dear is the famous ring that belonged to Hurrem, the wife of the Ottoman Sultan Suleyman the Magnificient.. Nothing less would suit you.. And look at the size of that emerald!!! Well consider me very rich and generous as you like..while İ enjoy the happiness of being able to give such a gift to you, not even paying for it!
Now.. İt's definitely worth another visit to the hospital to meet your chemo buddies (or shower buddies as Teri does 😳) and show off your gorgeous ring, eh? Now you "put your slap on" (as the beloved Alesta29 once taught us all) and choose a matching outfit, quick!! Mmm İ gladly accept your offer to hug me as long as you like to show appreciation cos it's a damn very expensive ring!!! And while resting your head on my shoulder, feel free to let out whatever you like tears (maybe) ... İt has been very hard on you..
Oops we may have hugged a bit late cos your "slap" is all over my favorite cashmire sweater now ( who cares about a bit of virtual dirt, eh?)....
Rant away sis, whenever you like.. We are here 24/7 to support you with ANY decision you make or cannot make.. While we are still able... İ fear we will cause a psychologist strike against us soon cos they have already started losing some patients 😊..
Teri, İ am sure you already started enjoying your virtual Hurrem ring.. Of course it would be very inappropriate not to get one to you as well... Wait.. Since İ am not spending any more bucks other than the wi fi cost, all BCO sisters & Mods get one virtual Hurrem ring today 😀😀 İ am virtually that rich, yay!!!
Know what? As all other Ottoman Sultans did, Suleyman the Magnificent had a Harem (house full of women).. But he loved Hurrem the most and married her. There was only two marriages in the entire history of Ottoman Empire of approximately / maybe a bit longer than 600 years between a Sultan and a concubune (like Geishas of Japan)... Ok İ have to stop waking up my historian DH to confirm all these bits of info.. He is getting pissed off already & we all know what that follows that ... The Ottoman Slap!!! 😉
Hugs & Love
Ebru
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Ebru,
Your generosity is (virtually!) amazing! We all appreciate the gift 😉. But the biggest gift you give is your empathy, kindness and consideration. For that there are no words, other than to say we love you for it.
Cindi,
We do get it. The decision on when enough is enough is yours to make, and you have the full support of everyone here. Our shoulders are large, our hugs are huge. We understand.
Nicky
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Cindi - It is so unfair for you to be going through all of this stress and discomfort when you should be enjoying life with your family. All I can do is send you my best wishes and cyber (((Hugs))). I think about you each day. It is clear that your husband loves you, which is a gift beyond measure, and that you love him. I wish you both well as you grapple with the realities of your illness. Your children see how sick you are, but I will bet that they love you very much and that you have added immeasurably to their lives over the years as you have brought them up. They will always think of you as their loving mother. While you are bone tired of being as sick as you are, your family is loathe to lose you. They would rather have a sick you than no you, so may not want to agree to hospice.
It's funny how strongly we want to cling to those we love for as long as we can, even when we know letting them go will be better for them (and we often extend that feeling to our pets also). Agreeing to bring my mother home from the hospital for hospice care was the hardest thing I have done as I knew how it would end. However, my mother was far from being as young as you are. Your husband has to grapple with not just losing you, his friend, lover and companion, but also with the scary thought that he will be on his own to raise the children that you two had. As long as you are alive he will not be alone - no matter how sick you are, but when you are gone, he will be. For those reasons, he may not want to have the hospice conversation, or be ready to hear you bring it up. I hope you will be able to find some relief through the doctors. Again, (((hugs))).
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Wishing just a little bit of comfort here tonight.
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Happy Birthday, Teri. May you enjoy better breathing and some simple pleasures today.
And if you're not satisfied with simple pleasures, hang on. I understand Ebru the Generous is sending you a small chest of precious jewels. Be on the lookout for a FedEx drone.
Tina
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Happy Birthday Teri. Best wishes for full lungs and no pain. *susan*
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Wishing you a very Happy Birthday Teri. Best wishes for a day full of friendship, love and comfort.
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Happy Birthday Teri!!!!!! Yahoooo!!!! Celebration yeah.......come on!!! Wooohoooo! She's 21 again, 21 again......oh shes got the key to the door......never been twenty one before
Oh, oops! Wrong Teri but I guess that's as good a number as any. Have a great day!!!!
Love n hugs. Chrissy.
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Sending special birthday wishes for your special day tomorrow.
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Happy Birthday Teri - hope you're having a good day. Love and hugs, S.
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Bon, I have tumors in my lumgs and lymphangitic spread. The LS is what they're now saying is the problem because the tumors can be controlled by rads etc.
Cindi, I was exactly where you're at. I just didn't want to be a guinea pig any more with my onc saying let's try this or maybe a little of that. Have a plan or leave me alone! So I was really exhausted. But now I've been on hospice 4 months (4 months?!) and I still can't breathe so I see no increase in my QOL. So the only reason I wanted on hospice was for better QOL and I'm not getting it. (I think I may have pleurisy right now. Ouch.) I thought I might try and see if there are any new treatments out there for LS or just for breathing specifically. Every other person I know or have known on hospice has had better QOL so this is not the norm and I'm sure you'll do better, Cindi. You'll be in my thoughts.
Everybody, I was told it was easy to get back into treatment. Apparently I just have to make the appointment, tell hospice when it is, and hospice will call my onc's billing department and tell them to bill hospice. Then I have to tell my onc that any tests have to be pre-approved by hospice if they want hospice to pay for them. Well, my appointment is on 1/21 at 11:40. I need to come up with a list of questions. My onc doesn't have to call me.
Questions would be like that "someone on these boards had LS and was treated with xxx. Would that work for me?" So that is why I would like to know what others have done.
Mods, should I look through another forum?
Thanks for a your help.
Teri
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Thank you all for the birthday wishes. I love it when other people say "Oh you can pretend it's not your birthday or pretend it's only your 29th " and I say no. I like every birthday I can get. It confuses them for a moment until they remember my cancer.
Ebru, thank you for the ring. Now I can say I've been given a virtual piece of Turkey. It fits perfectly, too. I'll wear it every day.
Bon, thanks for getting hold of Forrest and Deuce to get my birthday wishes from them. That was sweet.
Teri
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Capri/ Teri.. I would never had made that post yesterday if I knew it was your birthday the next day! Happy Birthday! I hope your Birthday is pain free and comes with better Air! I hate being short of breath.. Ebru sent the neatest rings. Being an artist I'm sure it speaks to you. Blessings to you. Hugs! Cindi
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happy birthday terri from Hamilton mt
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Teri, happy birthday from Tennessee! Not much exciting happening here, just warming up, raining, the kind of time that a cup of hot cocoa and slice of birthday cake is best shared with friends. And maybe a little Southern Comfort or other home-distilled beverage!
Ebru, thank you SO MUCH for the rings and the history! You are so generous with your virtual wealth, and I am so grateful to be one of the recipients! Now just contemplating who will be the first to experience that slap!
Cindi, your post really spoke to me as I have had such similar thoughts over the past 3 years. I changed MO last year, she is very gentle and makes suggestions based on what she thinks I can tolerate. She never even suggested the Faslodex as the previous MO had been pushing for - I just have an unreasonable objection to IM injections (possibly because I am so thin and am paranoid about needles hitting bones and nerves!). She suggested the afinitor/letrozole (she thought the letrozole would be easier on me than the other AIs) and I got 10 months of reasonable quality of life without progression. I did have lots of pains that responded OK to meds, and fatigue, but neither of these drugs is as hard on the bone marrow and MIGHT be worth considering. But I am pretty much done with further meds at this point as well - am on Xeloda and if this doesn't work, I just don't see myself doing IV chemo again. Scary thoughts. But as mentioned above, your family loves you and it is very very hard for them to envision life without you. Have you been able to sit down and talk about what they fear the most? I had this very short conversation with DH a couple of days ago, and when you can name the fears, you can sometimes find ways of dealing with them in a more concrete manner. Do you have a mental health care provider or counselor? Can you have the whole family have a guided discussion with this person? Or maybe a pastor? Or even your MO or PCP? And I am not sure, but I suspect hospice would be an excellent place to start as they provide services for the family as well, but just getting the family to agree to even listen is a big challenge. My father was admitted to hospice only less than a day before he died, and I wish we had contacted them sooner - it made a huge difference in how comfortable his last hours were, and I regret that perhaps his last weeks would have been easier if we had been brave enough to get hospice earlier.
Sorry to sort of hijack this discussion, but just wanted to lend my support. Hugs to all of you, and let's get out our bottles of bubbles to celebrate the Birthday girl - it's great pulmonary exercise and helps clear central lymph nodes!
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Happy Birthday from Ventura, California!
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Happy Birthday Teri from Jonesboro , AR
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Already Saturday here 🎉🎈🎊👏happy birthday Terri!!!🎉🎈🎊👏 from İstanbul, Turkiye.. See your cruiseship right there girls 😃😃?
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Happy Birthday Teri!!!! From Australia!!!
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Teri
Happy Birthday from Massachusetts!
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Happy Birthday greetings from the Hamptons, out here by the wild Atlantic 90 miles east of New York City!
I was thinking about your goat Deuce a while ago and that reminded me of one I knew many years ago at a barn I rode at when I was 12. This particular goat terrorized all of us young ones. He was tethered on one side of the stable yard by a long rope to his collar that was tied to an old VW bug parked there. He would hop on and off that car's hood and roof with the greatest ease, but if he spotted one of us daring to enter his territory - the span of his rope - he'd charge us, head down, horns first. We gave him wide breadth. He loved the barn owner and would go to her to get his head rubbed. I enjoyed watching him play all over the car, but made sure never to go near his space. He trained us well.
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