A place to talk death and dying issues
Comments
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Hortense, just checked in and saw your question about the night sweats. Night sweating is one of the symptoms of cancer being quite active. I used to have a lot night sweats until my treatment started. Now I do not have any. I guess this is why the doctors asked you. Hope you are comfortable. You are in my thoughts.
Calico, Blondie, Rosevalley, and Skylotus, wish you all comfort and peace.
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Hey there
Mab , welcome everything they said, lol we tend to jump the gun. Try to wait till u hear from theFed. We r here
Night sweats. io have them all the time but not everything, everything is soaked just the top half of my body , keep forgetting to ask. I don't get scanned or blood t taken anymore , they r going by the symptoms n there aren't any. I went off all treatment July ,20,2014, over a year.
Qol would b better off I didn't have oxygen, 24/7' I feel good for the most part.
My hospice won't let me order anything had to go directly through them. My meds are fed exed to me.
I love all of you , we aren't ready yet.
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Hi people
Following all the posts. Praying for comfort and peace. Your messages bring this disease out front and in reality. Courage. I will do the same; stop treatment when it's time and call in hospice. I have my "when I die bag " all ready. Slowly clearing out personal items to friends and family. Gives me joy to see how much they love the stuff I loved.
Goals. Yes Blondie. I keep setting goals to keep me focused.
Comfort and peace. 💐💐
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Zavo - Thank you for the answer to my night sweats question. Cancer being active make sense and I wondered if that might be the case. Funny, last year I had a week when my body chemisty seemed to change. I didn't smell like myself for about seven days, but when I asked my doctor about it, she couldn't explain it. Now that I know what I have, it makes sense. Something was going one. Though, last year we had no idea I was so sick. Pancreatic cancer has no tests and its symptoms are so ordinary. It is a lot like IBS, or excess gas.
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Hi Lovely Ladies,
One week ago, I started falling. At least I thought it was falling, until I realized it was more like dropping...onto concrete floors. Evidently the cancer is pushing on my spinal cord, or attaching to it. This came after another jump in intense sudden pain onset. Hospice decided to send me for five radiation treatments to the spine strictly for pain relief, er, possible pain relief. I'm now bed-bound, or wheelchair only for transport. Hospice changed my pain meds some, but I've discovered, if you let the pain get away from you, it's real hard (and painful) to get it back under control. Also, being bed-bound really limits what I can and can't do, as I'm alone. This may change soon, though.
I had night sweats to the point of ridiculous too, noticed that's changed with med changes and bedding product changes...(i.e., took away feather bed topper).
Hang in there ladies, love and light...T
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Sky, concrete floors? that's an ouch. I'm sorry you are bed bound, but feel free to keep a device on your lap and communicate with us!
Blondie, Rosevalley, Brenda, Hortense, everyone, thinking of you and hoping you are having a good day.
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Pajim- yep good day. Met with a very young radition oncologist... either she's young or I am getting OLD- both. I got CT scans and tattoos for the radiation zap of the left shoulder, right femur and left hip. I figured might as well zap all my ouchies. Hope it works. They do it Monday. I am freezing, been cold since radiation. No night sweats and all my padding does not keep me warm.. dang it. I could use a hot flash.
I keep checking for news about Calico and nothing. I know her first name, age and where she lived. So far nothing posted in the papers matching anything.
I hope your irritations/ SE are being treated effectively and your loved ones are as near as you want them...haha
Take care ya'll. Peace.
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Hello all you lovely Iadies,
Night sweats are common in cancer patients. I remember my Dad had them in the late stages of his life. It was also one of my symptoms prior to dx - not very comfortable.
Rosevalley - I have lots of hotflashes to share - sending some your way LOL!
Sky - sorry to hear about your falls. Ouch indeed!
Good luck to you both with rads.
Sending hugs all around.
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Hi folks, Night sweats>>DH went through a period that was awful. Sweats frequently day and night. He had advanced Lymphoma. Doc put him on acetominophen/Tylenol every six hours. Sweats stopped. I asked her if that was in an algorithm(treatment plan) b/c I hadn't heard of it. She said "No, I just listened to him". We laughed, I called her a great detective. He wasn't in Hospice yet, but the Palliative doc wore two hats. She listened.
Small thing, I learned in the sweat period to keep flat sheets on the bed. I kept more flat sheets in a basket close. When he drenched, I could whip off that flat sheet lickety- split with another flat sheet on within seconds. No tucking. Worked great. Do it till this day. No tugging and pulling on fitted sheets. It works even better if you can use a flat sheet a size larger than the bed. Since then I created a drawer or cupboard by each bed for linens. Avoids having to find them in the linen cupboard. Had a basket for pillows and pillowcases. I could switch them out fast too.
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Rosevalley, funny that when we're looking for a hot flash we can't find one.?. Feels like a total cheat.
I hope the rads bring pain relief.
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pajim- me too! It's a lot to go through, so I hope it works.
For those of you with malignant ascites, (may it always be a teeny percentage or none at all) I wonder how the amounts off can vary so dramatically. I know the intestines get in the way and I have seen on ultrasound the pockets of fluid that they can't access. One of my reasons for having home health nurse come and do the drain was so I can lay down and get more off. It is way to difficult to keep a sterile field, dressings and caps from rolling off the bed and the bottles upright! Well that theory got busted. I told my nurse I would do todays drain since Sat. we only got 450 off and Tuesday 1100cc and both times I was laying down. I was optmistic that perhaps the herceptin was working, but my gut was pooched out. So today I decided to sit up and drain... got off 2 bottles past the 1000cc mark each container. I can do this myself sitting up, although trying to get the tube coiled, drain sponge and biopatch in place and the transparent dressing over the entire thing (when gravity works against you) is not easy! Yay I feel better... boo the herceptin isn't making the fluid accumulation decrease. Or we just had pockets of fluid we couldn't get to.
So in theory if the cancer gets under control the ascites should lessen. I want to throw out to all of you a question. Has anyone actually seen a patient who had maligant ascites that had it brought under control with any chemo or drug? I sure would love to know about them if you know of any. The home health nurse says she has had some patients in the past who tolerated the pleural (lung) placed catheters. You can't drain any more than 1000 at any one time off of those (or so says the company video). If it's malignant ascites (gut) you are capped at 2000cc off at any one time. It's a great system so if you are suffering with fluid build up and are a candidate for the Pleurx catheters get one. It beats waiting for a paracentesis or thoracentesis. The bottles are very expensive 158.00 each kit. Thank goodness for insurance! Probably way more than you wanted to know, but of interest to those who suffer from this. Also stats for survival of malignant ascites are poor 2-5 months. I have had this since May when the symptoms started. So I am 6 months into it, one month with the Pleurx catheter. It has made my quality of life MUCH BETTER!
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What is ascities
Rosie somebody should pay for it. They were paying for pull up
Still haven't got geo being the home health care aide got meals on wheels problem is I am picky n some stuff is Spicey.so reading what I like giving the boys what I. Have to go to the mo tomorrow get thek port flushed and get the hospice reauthorizef for another,2 -mouths , then Wal-Mart
Love u guys
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Ascites- fluid accumulation in the abdomen. Malignant ascites is from cancer.
Suersis- After you have the Pleurx catheter placed in the same day surgery center, they will give you a starter kit. My starter kit had a very good CD that showed the process and written instructions and a cheat sheet chart, plus 4 kits bottles, dressings and caps etc. The surgery center nurses will place the initial order faxing the insurance information and the medical order for the equipment to be sent to your home. (Make sure you keep all those papers together because you will need to refer to them if you do the ordering or home health does it.) Home health will set up the appointments to come out and do the draining and/or show you how to use the eqipment. Then depending on what your medical doctor writes, you will be drained every other day or twice a week etc... it depends on how much fluid is being produced and how you are handling it. If you have questions ask your medical oncologist. Keep a record of the amounts taken off and the color, skin etc. The reason you can't pull more than 2 liters off the gut is because you can have a fluid shift and get woozy. I also have zero experience with the lung and pleural effusion quantities drained (except the company in their video states no more than 1000cc can be drained at a time and the bottles come in 500cc size) etc.. so I can't offer any advice.
There have been serveral times that at the end of the draining as the last of the fluid comes out, it kind of aches. It's not a sharp pain, but a funky cramping. It's like my intestines expand or something weird. Once you shut off the clamp and put the cap and dressing on it usually stops. When I pull off over 1300cc it makes me tired and a few hours later I just want to nap. But the relief is so fine to get that fluid out and my breathing is better. If you have ever had repeated paracenteses or thoracenteses you know the sting of the lidocaine and nick of the scalple, draining all at once and then bandaids and bruising...ugh. Well once that initial catheter pacement heals you are good to go! They pulled out 2.6 in surgery. I was wide awake during mine and watched the placement. I had already watched the video and knew what to expect. They numb the area and you don't feel anything. I wish you success with it. Keep us posted. Insurance has paid for the placement and so far for the equipment. What you will pay will depend on your plan. I was just surprised at the invoice to insurance included in my last order and each kit was 158$.
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Blondie ((((Hugs)))) Why don't you stock up on frozen dinners and chunky soups. There are so many good ones out there. My DD2 can even get vegan frozen dinners and they are yummy! Annies makes blackbean and cheese buritos that are so tasty. Finding things that aren't too spicy is tricky... maybe stoffers? Sorry meals on wheels is too spicy. It sounds like your pain is under control going in for a port flush and shopping! Take care.
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Thank you all for such interesting posts. I have learned so much reading through the past two pages. I would certainly want that catheter rather than its alternative. I may be going in that direction, but am not sure yet. And, the tips on handling night sweats were excellent. I am going to search my linen closet for extra flat sheets and keep them, and pillowcases, in a basket near my bed. Makes such good sense.
My Hospice nurse told me yesterday when she came to see me that night sweats happen when the tumor is active, which is what one of you posted originally and what makes sense.
I have been feeling well and relatively strong lately, though I usually need daily naps. When I enrolled in Hospice the nurses told me that about 30 days after patients stop having chemo they usually feel stronger and have a good period. I think I am experiencing that right now as I am about a week past that 30 day mark. I have been trying to take advantage of this window of opportunity by getting all sorts of things done.
Yesterday I washed off the front porch and moved all of the big flower pots off of it and ready to be stored for the winter. Today I will take a look at the veggie garden I had to abandon after I got so sick from chemo. I'll probably just pull out the trellises for beans and tomatoes and let someone else store them for me.
I told my husband that I plan on writing down a schedule of things that will need to be done around the house and the propertty in the late winter and spring so that life can go on pretty much as it always has here. I already asked him to hire someone we know to do spring clean up outside, as he simply cannot take that on as well as everything else he does. I asked him to have the lovely raised planting beds he built for me prepared so that our grown kids can plant in them when they come home on weekends. I think the kids would enjoy putting in lettuces, beans and tomatoes and the beds would be easy to keep up.
As I have always taken care of the flower beds and planting the large flower pots, I am going to simply list what goes where and make a list of suggestions of what could be planted in them. That way the place will look normal if I am too sick to do the work myself, or if I have died. Planning ahead is so hard when no one can predict what will be happening, isn't it?
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Sueris- I met my deductables this year so no more co-pays. I would think if your lungs could expand and work properly then you will feel better and maybe...lower the oxygen or get rid of it? I don't know. The catheter does hurt a bit the day after placement, but once it heals like any surgery... you don't notice. Take your pain meds. I told the pallative care NP that I love this catheter. He laughed.. well you are the first one to say they "loved it." Well I get to feel so much better and my life isn't as effected by the fluid build up. I miss being able to take a bath but hey.. in the great scheme of things. :-)
Hortense- wonderful that you are able to garden and take care of some things. I know how that feels. Isn't it heaven to have enough energy to just do normal activities...putz away in the garden like normal. I bought a big bag of double tulips for the garden soo beautiful. I thought after I got them home.. "you dope you probably won't even be around to see them bloom!" No matter my DH, daughters and neighbors can enjoy their gorgeous little tulip faces and celebrate Spring. Now the trick is to keep our squirrels from digging them up and munching!
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Rose...thank you for sharing what honestly sounds like such a dreadful part of this ..cking disease. I hope I never have to experience ascites, but reading this, and knowing that suersis got important info that's so much more valuable coming from someone who's been there, done that...a huge thanks. Again, if the masses had a clue as to what a mbc dx can lead to...I think $ would be flowing to the right places. I'm glad that you're able to have good relief = qol with the catheter...just wish it was an easier procedure....and still hoping herceptin can help!
Suersis...thinking of you & hoping the placement goes well next week!!!
Blondie...can you tell your hospice gal to let meals on wheels know you can't eat the spicy foods? Seems to me that most people who are on some type of tx wouldn't be able to tolerate it...and if they're trying to cook to feed many...spicy shouldn't be the regular cuisine. Then again, I grew up on meat & potatoes so that's my comfort food!
Sending the same hugs to all...wishing someone from Calico's family could update us. Thanks Rose...for checking on updates.
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I, too, am hoping for an update on Calicocat.
Thank you all for sharing.
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Hortense, so happy that the simple thought of the flat sheets, pillows& cases helped. Bless you.
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Reading the posts here I could not help thinking of a story I read from Radical Remission, a book about cancer cure with unconventional medicine. Many years ago, a Japanese man in his 40s was sent home to die from the hospital after exhausting all the available treatments for his stage IV lung cancer. One very early morning, he went up to the top of the apartment building he lived waiting for the sun to come out. Right about 45 minutes (I hope I remember the time correctly) before the Sun came out, all the birds started singing. Once the Sun came out, the birds turned quite. He was amazed. The next morning, he went up to the top of the building again, 45 minutes before the Sun came out, the birds started singing again all together. He tried more times, everyday, 45 minutes before the Sun rose, the birds would start singing all together. He then did a little experiment. He put a bird in a covered cage. The bird fell asleep thinking it's night. Then he released a little oxygen from his oxygen can into the covered cage, the bird woke up and started singing. Once the oxygen was gone, the bird slep again. He repeated the oxygen trick, the bird sang every time. The man realized that 45 minutes before the Sun rose was when the plants on the Earth began to release oxygen. He went up to the top of the building morning after morning, sitting there for hours. When waiting for the birds to sing, he breathed deeply and slowly, singing music in his mind. Months passed. Years passed. He is alive till today.
I want it to happen to all of us.
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beautifully retold. Your words are poetic. Thank you for making my day/night as I sat in in gloomy anticipation of my scan results. Feeling hopeful because of you
A peaceful night to you all. Letranger.
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Xavo- beautiful story. I doubt I will lucky enough to have it happen to me.
Yep if the general public knew exactly what MBC patients live day in and day out and how prevelant the disease was, they might spend more money to cure it. I wish they would spend the same amount of money they do on ED (which from the glut of night time advertizing you would think was a national emergency) and direct it towards cancer research.
Suersis- yeah for the co-pay pick up and relief from that worry. I am sure you will do fine and experience relief. Ronniekay- thanks and may you never experience this. I found so little on it that I have purposefully tried to write some about the experience so others have something to read. There isn't much. There are no long threads because sadly folks don't last long enough to write them.
Have a great weekend.
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You all are in my thoughts and prayers. Courage, honesty and upfront information. This thread is so valuable as documenting your experiences and knowledge. I've picked up so much helpful information from your honest experiences.
No one knows until they are at this point and walking the walk.
My liver is full on cancer. Hoping gemzar will bat it down. But I know in time I will be facing similar situation and at least with the honest info shared here I can be more knowledgeable. And make choices.
You do what you have to do. This I am learning with this disease. Thank you from the bottom of my heart for sharing on this thread. Yes, I have my "when I die" bag ready and my loved ones know all about it.
Love to all
Diana
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Welcome diana
Spoke to my Dr he told me yes sweats happen when cancer is active.
Anybody have any info on,calico, whereshe lives. Worried
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"Sweats" can also happen when your cancer isn't active......I am on Faslodex and my TMs have dropped almost to nothing but I still get the "sweats" because after all, AIs cause them and in my case I get the "sweats" from Tylenol - always have.
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Slowdeep breaths sent me a PM that Calico lost her battle on October 6th. The obit is in the FresnoBee's for October 18th under Eleanor (Ellie) Schermerhorn. Sweet release dear Calico onward towards the next journey, sending love your way. Peace and hugs to her family. I sure will miss her posts and humor. I am sure she won't miss cancerland.
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Rose, I appreciate that you let us know. I am deeply saddened to hear the news. What a beautiful spirit our sweet CalicoCat had. I will miss her. My deepest condolences to her husband, family and other loved ones.
Here is a link to Eleanor's obituary
176091854http://www.legacy.com/obituaries/fresnobee/obituary.aspx?pid=176091854
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Thanks Divine for posting the obit and the legacy link.
Condolences to all here. She was so inspirational and loved.
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Thank you Rose and Divine. I am just so sad to read this. RIP sweet Calicocat - I will miss you and always remember you. My condolences to all who loved her.
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Calico, one of our "sweet sisters," offered so much of her precious self to this thread. Her legacy is profound--here, within her circle of loved ones and friends, and in the wider world. While aching deeply over her death and our loss of her, I take genuine comfort knowing that her essence—her energy—is still present in the universe.
I thought sharing some of Calico's own words about her experience might bring us comfort and might provide some perspective to others who might be reading this for the first time. In places I give excerpts, in others I give entire posts.
It was just July 29, when Calico wrote: "Hi, I made the choice yesterday to discontinue chemo. All the news coming from my labs and physical exam were negative, and were bad enough that I couldn't have proceeded with chemo yesterday anyway. My onc and I had the, 'When is enough enough?' discussion last December, so he knows I didn't want to chase pots of gold at the end of rainbows. If I believed there were any other realistic choice that wouldn't just bring me back to where I am now, or worse, I would try it, but I don't believe there is….Love you all and thanks for being there!"
And later on that same day:"Thank you, sweet sisters, you bring me great comfort from your understanding and support. No one gets it like you do, not my DH, not my onc, not my other family members. It's not that they don't want to; they just can't….I expect I'll have to recalibrate my expectations of whether or not I had a successful day. I hope I can remain at home, but DH is 77 and can only handle so much. We will get hospice…. This is one of those times I am grateful I don't have children. I don't think I could bear their pain and mine, too."
On August 4th, Calico wrote:"Saw my onc today and he said he'd make the same decision if he were in my shoes. It's a relief to not be pulled this way and that. He's setting up hospice for me, but emphasized he was not stepping out of the picture and would see me through to the end. I could have kissed his feet….I wish I could conjure up a good woman for my DH. He's 77 and someone will need to help him at some point. He's so worth it."
On Aug 9, she wrote again: "Hi, sweet sisters, it's been a tough week and taken me time to wrap my mind around it….On Monday my DH and I met with the onc again, and again agreed I should stop treatment. My onc said he would be with me to the end, and set the wheels in motion for me to start hospice. On Wednesday, a hospice nurse and hospice social worker came to our home and met with us, and arranged to have oxygen delivered for when I would need it. Friday, the nurse delivered all the meds she wants me to use when needed, including a box of morphine. I cried seeing the morphine with my name on it. It's something I never wanted to see….I notified my two sisters by e-mail, and put the word out on the local friend grapevine. I would much rather my local friends tell others than for me to have to do it. I wrote cards to 2 friends and my ex-SIL because that was easiest for me. It just felt too much for me to get into extended conversations with them about it….I always told my DH that it was entirely up to him whether to have a service for me or not, and I thought he would prefer not to. I told the gal I think of as my spiritual advisor about this, and she said she's worked with others to put together service plans in advance which could be used or not. I mentioned this to my DH and he said he'd very much like for me to do that with her. This surprised me. One would think after 34 years I would have known what he wanted, but we've never been through this before….I was very grateful when my DH said he would contact the Neptune Society about picking up my remains and cremation….I feel fine except for bad SOB and extreme sleepiness….So that's the long and short of it. Thank you for being there!!!!"
And more on August 9th, "Thank you, dear, sweet sisters. You are the only ones in my life who I can bring my thoughts to, who are able and willing to help carry the pain. Bless you all for your kind words and for being there."
On August 12th, after writing about a delicate situation with her sister, she shared, "The last thing I want to do is hurt anyone as I prepare to leave. I was hurt, and I don't want anyone to be left with that....Thank you for being there!!!"
On August 12th, she shared her letter to her sister. Her letter included the following: "I do not want anyone at my bedside when I'm passing except for Bettina (my spiritual adviser), a Buddhist priest if available, a hospice nurse, if necessary, and Scott sitting quietly in a chair reading his Kindle since that is normal for him and would be comforting to me. I've had a lot of time to think about this over the years. The reason for my wishes is that I can't imagine anything more painful for me than having to see the pain and sorrow in my loved ones' eyes. I want to leave this earth anxiety and pain free, and I know I can only do that in a very simple way. I also don't want anyone jumping on planes and hustling to get here as I take my last breaths. That would really stress me out, too. What you can do for me is just be who you are, loving sisters, and we'll try to get together as we can. You are both invited to come here, but the timing of that is not critical. Please know it is not because I don't love you that I ask this, but because I do...."
On August 18th, Calico wrote: "Thank you, M360, and to all my dear sisters here, who understand what others can't begin to comprehend. The Portland DS2 wrote back that her problem was she didn't trust the process and was afraid that she would just get a call saying I was gone and she wouldn't be able to see me one last time. I don't know that there's a lot I can do about that except take a guess about when I'm going to die and ask her to come??? The other DS1 said she "thinks" she understands what I want. I hope that now that the stage has been set, things will be apparent at the time. Or not , , , ,, ,
Anyway, time to go play games and eat cheesecake with some other friends! Wish you were all here!"And on August 30th, Calico shared her last post: "Hi, Dunesleeper, that's good about the Mass. Catholic? That's all I'm familiar with. Plenty of pre-determined ritual that you can slide right into. It's looking pretty good to me right now. I want to be immediately cremated, and my heart does not lay with Catholisism. My church, if I have one, is non-denominational. They draw from all religions. I love its eclectic qualities.
Nite nite and see you tomorrow.
xoxoxoxoxoxx
Calico"
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