I’m on hospice - anyone else?
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@kbl and @exbrnxgrl , I really appreciate your reasons for hospice. I’ve been wondering where I’m going to draw the line. I’m following your stories closely.
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@kbl I appreciate how you've described how life has been for you on hospice. It's quite helpful. @exbrnxgrl How are things going for you? Is the pain under control? Have you been able to enjoy spending time with family and friends? The bed sores sounded awful-frightening how quickly they developed.
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@chicagoan Thank you. I have my grandson for the weekend, and we spent the day doing a scenic rail tour yesterday with my daughter and SIL as well. It was my best day in a long time, and I had over 5,000 steps. I am so grateful today. He gives me energy for sure. I love him more than life. I always say I put my big girl pants on when he’s with me. Lol.
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Chicagoan,
Thanks for asking. My pain has been well controlled since that very short period of time when the pharmacy computer system went glitchy (again, no paperwork snafus, no denial of anything!). I was in hospital for 3 weeks and despite diligent care, bed sores still developed on my very skinny butt. I really have no padding there at all. The best news is that I am no longer constipated! Despite copious amounts of assorted laxatives and prunes, nothing was working, including powerful enemas. My hospice nurse said she’d never seen anything like it. However, at 5:00 am today…success! You can believe I was doing the happy dance 😂. I think I even woke my caregiver up😉.
Hope everyone else is doing well.
PS: My neighbors visited me yesterday and they brought their 5 week old baby as well as their 2 year old. Nothing lifts the spirits like snuggling a newborn 👶🏻.3 -
@kbl What a fantastic day! I remember how much you enjoy being around your grandson.
@exbrnxgrl-So glad to hear you are no longer constipated. It is such an awful feeling! Snuggling a newborn-what bliss. Hope you continue to be comfortable and able to enjoy life's precious moments.
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As KBL noted, it is a personal decision and I think we all take different paths to arrive at that point. My trajectory was rather sudden. I spent 13 progression free years on very minimal tx when I was suddenly hit with massive progression, despite close monitoring. It was like a bomb went off in my spine and ribs (…fractures and hot spots too numerous to count). After that horrendous reaction to my half dose of chemo, I knew beyond a shadow of a doubt that I did not want to pursue further tx. The hallucinations were terrifying. I am, BTW, the queen of rare side effects in terms of most aspects of my tx. So whether I have 10 weeks or 10 months left, I have no intention of spending it fighting bizarre side effects. Because of so many fractures, my mobility is severely compromised.
PS: I will describe the hallucinations one day but suffice to say it involved the Kardashians, kidnapping, and Las Vegas. A true nightmare…4 -
@chicagoan I am up to a total of 15,000 steps in three days and about to collapse. Lol. Not literally, but suffice it to say I will be down for the count once my guy goes back to Mom and Dad tomorrow. I am amazed when he comes. I fight so hard to keep up. I know I will pay a price when he goes. Well worth it.
@exbrnxgrl Oh, I know how good it feels when we finally go. Glorious indeed. I’m so happy you went.
Oh, boy, those hallucinations do not sound fun. I’ve never had one.2 -
Bumping. On the hospice front, I’m still chugging along. I am having a little trouble breathing every time I eat because the food sits right under my breast bone for hours. I get really tight. Some days I’m weak and some days I have more energy. I’m also getting cramping every morning before going to the bathroom, which is new. It doubles me over and then goes away.
@exbrnxgrl How are you doing?
Yesterday I made it to 64. I chose to go to a beautiful waterfall and lunch. Once we got home, the breeze was amazing, so I sat outside enjoying the beautiful weather. It was such a beautiful day.
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Happy Birthday, @kbl! 💝
We’re so glad you shared your special day with us. Sending you gentle hugs.
The Mods
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You are one strong person, @kbl . Thank you so much for sharing the journey.
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Happy Birthday, kbl! Glad you found such a beautiful place in which to celebrate.
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@moderators @tougholdcrow @chicagoan
Thank you all so much. You are so sweet.1 -
Happy birthday, KBL 🎂!
I’m hanging in there with some days being better than others. Pain is mostly well managed but it’s a balance between total pain relief and being knocked out by the strong meds. Mets in the spine and ribs, extensive, are tricky to manage since those bones are heavily involved in almost all movement, including breathing! I am limited in what I can do but despite this, I feel content with my decisions and my care. Family and friends come to visit and I speak or FaceTime with them regularly.I am still shocked by how rapidly everything went downhill but as I’ve said before, the course of my disease has been anything but typical. 13 years of coasting without progression at stage IV and then bam 💥, it was like an explosion. From my undetected pneumothorax after port installation to my extreme reaction to a half dose of chemo, nothing has gone as would be considered typical. Sigh… I always did march to a different drummer.
Take care, all 😊6 -
Glad to hear that the pain is mostly well managed and that you are able to spend time with friends and family. I thank you for your support when I was overwhelmed by the initial diagnosis and think of you often .
Eleanora
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@exbrnxgrl Thank you. I am sorry you’re having some pain. Glad it can be controlled, but sleeping a lot because of the meds, not so much.
I do nap daily and went pretty deep today.
I’m having more problems eating and being able to breathe because of the basketball in my stomach. It’s not fun not to be able to breathe.
I’m so glad you have your friends and can FaceTime.
I will be 12 years in August when they missed my diagnosis, so we are close with how much time we’ve had. I am grateful for sure.Hugs to you!
@eleanora Thank you so much.
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Dearest @kbl Happy Birthday sweetheart. Your picture shows such joy in living in the moment. May you solve that tummy problem (I use a proton inhibitor ) .
@exbrnxgrl You have such a strong character and it should always be honored, not questioned. Your support on this forum has been a blessing for me as well as many others. Your love of teaching will bring strong young people up in this world with good values and sense, that you have no doubt instilled upon them.
Thank you both for your honesty in traveling this path and teaching us there's nothing to be learned about suffering by suffering more. (I borrowed that saying from a former bco user).
Laurel
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@irishlove Thank you!
I actually do take Omeprazole daily as one of my meds. I’m not having any GERD symptoms, thankfully. I think things are just starting to squeeze in and block things from moving at a normal pace. I’m also having pretty good cramping for about 30 seconds a few times in the morning, but my bowels are still working, so for that I am very grateful.
I love the quote. Thank you for that as well.
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Good morning, all. I am going to talk to my nurse and ask for a doctor visit this week. My digestion is pretty much coming to a standstill, but I still want to eat. That’s a huge problem. I’m suffering and need to figure out how to balance. I would assume soon the hunger pains will stop, but they haven’t yet. It’s hard to discern if it’s my system shutting down or the cancer blocking the way.
@exbrnxgrl Are you having any digestion issues? Hoping your pain is still under control.
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@kbl-If you are still hungry it sounds like your system is not yet shutting down. Hope that they can find a solution so that you can get the nutrition your body wants. So sorry to hear you are suffering but I greatly appreciate you sharing your experiences.
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@eleanora Thank you.
@chicagoan That was my feeling as well, and my nurse just confirmed. It’s the cancer starting to squeeze my stomach. If it continues, I will eventually not be able to eat, so I’m breaking things down to as small as I can and upping my reglan and senna to keep my bowels moving. She also told me my oxycodone will calm my breathing, so I may try one just to have a break. If I start to throw up or have bleeding, that will be a huge problem, but so far none of that.
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kbl-Are you able to get liquids down-maybe ensure or smoothies, milk, shakes, etc for the moment? I just hate to think of you being hungry.
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@chicagoan I’m still actually eating. I’m just lessening how much at a meal so I don’t overstuff. I had a half a tuna sandwich for lunch. That seemed to be okay. I just won’t do multiple things at a time. My chip-eating days are over. Lol. I love my chips. I’m also trying to wait a little longer between meals to where I feel a little more hungry.
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KBL,
I can relate to the eating issues, though in a different way. I never feel hungry but can tolerate some foods in small portions. I am as skinny as a twig. Vanilla Greek yogurt, applesauce, a scrambled egg, and mango sorbet (Talenti brand is so good!) are my mainstays. I have been able to eat small portions of pho (Vietnamese noodle soup with meat and veggies that you choose) and udon (Japanese noodle soup). I live in between the Little Saigon and Japan Town sections of San Jose, so lots of great take out places .
Pain is mostly well managed but my needs do change so then we have to play around with the dosing schedule. Nausea and vomiting, when I wake up in the morning, is still an issue but is unpredictable as it doesn’t happen daily. Constipation issues come and go but Senna capsules have been helpful as well as a daily dose of MiraLAX. I feel like these issues are just going to be ongoing and dealt with as things and needs change. I hope you find a comfortable way to navigate through all of this!PS: I only had a half dose of chemo (taxotere?) about eight weeks ago but my hair is still falling out and only on my head 🤷🏻♀️
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@exbrnxgrl I’m glad you can eat some things, but it definitely is not great when nothing sounds good. I hope they can keep your pain at bay.
With the mets to my stomach, can you believe in all this time I’ve never thrown up with them? The reglan and dexamethasone help with the nausea, but I will add something if it does get worse. I just upped my dose of senna to twice, Reglan three times.
I’m sorry you’re still losing your hair. Chemo is just not fun. That’s why I only did it twice. Nope. And it wasn’t even full-blown chemo.
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kbl-No chips? That doesn't sound fair. Hospice should be all about eating chips and maybe dip followed by ice cream! After I was diagnosed and under treatment, finally getting my bearing, I ate so many chips! I bought big bags of Ruffles, etc. All those years of watching my weight, eating and for what? But I did gain a lot of weight so now chips are a rare treat. I had a small bag on Fourth of July.
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@chicagoan Lol. I have been crushing the chips for months. Hospice didn’t tell me no chips. I just can’t eat them because they make me feel 10 times worse now. I have many bags in my cupboard. Up until last night I had been eating butter pecan ice cream in a cone every single night. I might have to give that up too. I just want to feel comfortable. Ugh.
Hospice says eat whatever you want. They are all about having you be happy rather than worrying about diet.
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I was never a snack food eater so chips and that kind of thing never held any appeal, even before bc.
Chicagoan,
I hate to burst your bubble but hospice is not about making you feel “normal “ so that you can indulge in whatever you want until you pass away. It’s main goal is to make you as comfortable as possible, within the limitations of your disease, rather than dealing with the side effects of treatment, which become increasingly unpleasant for most. It’s definitely about eating whatever you want but as your disease progresses many find it difficult to digest and process foods in the same way we used to. I look at it as a gentle option for speeding up the inevitable as peacefully as possible. My extreme reaction to a modified dose of chemo convinced me that continuing tx was not how I wanted to spend my remaining time. I’m ok with not “fighting”, i.e. continuing tx, until the end. I didn’t choose my disease but I can choose how the end goes.
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