A place to talk death and dying issues
Comments
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Brenda, that quote is so true, isn't it?
Prior to bc, I was aware of and appreciated many of my life's blessings. Being young, tho, I multitasked with the best of them, taking on too much, doing too much out of obligation and wasn't true to myself. These days, if someone doesn't like what I'm doing or the way I do it, I say, "too bad". Much less guilt about many things.
I'm getting to the mindful part. I am more mindful since bc, and I think I help others to be that way more often. I will point out ways to others how to slow down. I almost refuse to multitask. Just one thing at a time. That means saying no to some things others want from me. Life in general often wants to throw a lot at me at one time, people tend to pressure me to do more than I want because I'm capable. But I call the shots now, and I turn things down and say no. If they don't like it...tough.0 -
To all who are trying to decide what to tell their children....In my mind, anything more than I love you and I love you more than you will ever know is okay ...I lost my dearly beloved father 13 years ago...I walked out of his hospital room and he lifted his oxygen mask and said he loved me and I told him I loved him...Later of course I saw him when he was unconscious but the last words comforted me through the next few years . And of course our actions over the last few years are the final letter to them...Children know if you love them and treasure them. Anyway that is what I will do. Carolyn from Music City
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Linda, Nel, Xavo, aiobheann, Brenda, pajim and pear, think I have everyone....thank you for your kind words and posts...
I think expanding on some posts can realize some great convos to be had in the future...
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Another sleepless night in our cancer world. Had chemo and decadron so I know I won't be getting any sleep. PET scan yesterday showed lung tumor had grown, two mets in liver, and mets in left pelvic bone. Changed to navelbine. Hope it is good stuff!
Just read through the past few posts. Sky, good to see you back though sad for your circumstances. You have been through a rough year. My husband and I find we have to joke about cancer sometimes and he will often say, just at the right time, "you still here?" I do sometimes wonder if other people say it, too. It's been 7 years stage IV for me. I'm hoping for more but no one really knows. I do have a new grandchild due in late January so I pray to be here at least that long! I try for one day at a time, and like Sky (or someone just said) I try to find something to LOL about everyday. I also try to say something kind or loving to each person I see or speak to. Sometimes that is hard as I have a daughter who is as negative and judgmental as they come. My mom passed away in July and we finished cleaning out her apartment at the end of August. Here I am, for the last few years trying to get rid of my "stuff" and I come hauling in "stuff" of hers. How crazy is that? I hate leaving a lot of unnecessary stuff for my husband but I guess he can just hire a dumpster for a weekend and get rid of what he doesn't want to keep! Getting ready to die is such a task!!
Love you all and love being able to come here to commiserate! Glenna
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Like Brenda, This post is for all as I don't want to miss someone...please know my heart joyfully skips a beat when I see posts from sisters I haven't seen for a while. It's the nature of this beast...that sometimes we take/need breaks from everything mbc, whether it be for emotional or physical well-being. There are so many of our beloved sisters going through difficult parts of this journey right now...and it breaks my heart. Please know you are always in my prayers & thoughts for healing & peace.
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Sky - this dying slowly isn't easy, is it? No gracefully fading away like in some old movies. Take good care of yourself. Try to enjoy each day as much as possible and maybe allow yourself to drift off on medications. Are you on palliative care? Is hospice in your sights? (((Hugs))) to you.
I have just started down this road, but my time on it may be faster than most as I have pancreastic cancer and have been given less than a year to live. My cancer has been spreading quickly and I can feel it happening as my discomfort is bordering on constant pain. I get a port tomorrow and start Fulfirinox chemo on Monday, not that I think it will help as median survival on it is 11.1 months, but because doing something will make my husband feel better.
Just this morning I was emailed a draft of my husband and my updated wills to read over and we are going to the accountant this afternoon to discuss them. I have been throwing out old clothes and papers and donating good ones to my favorite thrift shop. I won't be needing that lovely floor length designer silk chiffon skirt that I have worn only once any more so it is going into their front window to be sold for a good cause. That makes me feel better
I was intending to tell our grown kids about myself next weekend, but had to start breaking the news on Labor Day after our son said he couldn't come then as a college friend had just come to town. I only told the kids that I was very sick and about to start chemo and that it was important that both of them be here to talk to us about what was going on and family plans we have been making. He immediately told me he would be here. So, Saturday will be the big day.
I am certain both of them assume my breast cancer has come back. It is going to be increadibly hard to explain that what I have is incurable and that I am dying, in spite of chemo. Chemo, if it gets a response, will only lessen the pain and slow the cancer down, not stop it. My sweet husband does not accept that, but it's true. So, I have been looking into final arrangements. I have spoken to one funeral home and to the church about who gets to use my husband's family's plot. I also have a plot in my parent's space, so could go there.
I haven't decided on cremation or a burial. I thought I would explore the costs and what is involved with both, then see if I can get DH (dear husband) to speak to me about his wishes, if he can. I do know that I do not want to have a "visitation" with people staring at me and that I want a simple all wood casket that is made with wooden pegs instead of nails as they are beautiful. That surprised that funeral home director because I was brought up as a Catholic and all wood caskets are primarily used by those of the Jewish faith.
I had no idea there was so much to do to wrap up a life. I still have to put DH's name on my bank accounts, switch my Social Security payments to his account, assign a promissory note to him so that is is not in my estate, give away jewelry, etc. Whew .... I managed to get most of our magazine subscriptions off automatic renewal. I wonder what else there is that I haven't thought of yet?
Best to all!
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Dying slowly sucks,,I want to stop thinking about it I think if I was busier n went or of the house it would b better, keeping busy is the ticketthinking about u all al the big huSandy aka Blondie
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I got some good news today....
What I thought were mini seizures, my radiation oncologist assures me are not. It is something else, maybe to do with my blood pressure, but very scary nonetheless when it occurs. It happened twice today, so my youngest daughter got to encounter it as she took me to appointments. I start trembling, then shaking, then I can't walk, I shuffle stiff legged and must sit immediately or I feel like I'm going to drop. We had to get a wheelchair today, so of course I was bawling on the radiation table, under the mask.
We also got my pain meds worked out today with a pain specialist, so hopefully they start working for me. This gives me a little glimmer of hope...maybe I can try fighting again. I'm going to submit to radiation to my left hip and lower back area after the brain radiation, in hopes that will help alleviate some of the immense pain I am experiencing. I decided this today. They've already radiated the right hip and femur.
I have 9 lesions in my brain now, the largest at 2cm. That is the only one that is being treated rightnow. The radiation oncologist thinks it will be the cancer elsewhere in my body that gets me in the end. But, cancer is a trickster and no one has a crystal ball.
So, I'm feeling ever so slightly hopeful that I'm not skiing down a black diamond run but maybe sashaying a lazy blue run. It's something, I'll take it. The infection took a lot outta me, but I keep hangin in there.
Thank you lovely ladies for listening...
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I don't often post on this thread, but read every day. You have all given me the courage to approach my onc to begin the end of life discussions. I think he was very taken aback, tho stage 4 I am fortunate to be NED for 2 years now. So why the discussion, because we need to begin the thought process. I gave him some broad parameters on what I will want and wanted to make sure he will be on board. I do not want to be one of the folks who has every last treatment, and ignore quality of life. He talked about how the onc's can keep offering options and hope when perhaps it is past those discussions and should focus more on QOL. He assured me he is on board with me and I have the right onc for whatever the future holds.
Thank you all for the courage and strength you provide
Nel
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Sky great news glad ur daughter was there. Cancer sucks but we have each other n when I had our the first time this place iI didn't know I don't even know is it existed.
Good luck I will b here until the end, which btw if I. Here the bus scenario again I will slap that person. HAPPY. FRIDAY
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Happy Friday Blondie! Is it raining in your area? It's raining here in Mass. Hope you are comfortable.
Hortense and Sky, thrilled for you. What to lose? Any improvement is a great victory and joy for everyone!
I keep you all in my thoughts and will be delighted if you are all OK.
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Happy Friday to you to Blondie.
Hortense and Sky - thrilled for you as well.
Has anyone heard from Calico?
I'm learning so much from this thread. Here in Quebec, we recently have legislation to be effective in Dec, for medical assistance to die when nothing else can be done. A lot of controversy of course and many docs don't want to do it. Personally, I'm all for it and will fill out all paperwork for if/when I need it. Only the patient can request this (not spouse of family).
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Nope no calico... worried...Happy weekend
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Just did search on Calico Cat Last post Aug 30th.
Calico thinking of you and hoping for pain free days and time family
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well....I had two of those "episodes" again today. The second one happened in Chipotle. I was going with my daughter to get her lunch for taking me to two appointments again today. This one was very scary, as it was the worst, not to mention embarrassing being in a public place. My daughter handled it very well, ordering a customer to get a chair, but it did shake her up.
It probably looks like I'm having a grand mal seizure, but I'm not losing consciousness, although the room did tilt and spin greatly. I called my Doc, he's outta town, so the nurse said if it happens again, go to the ER. And I will. I'm at home, resting, and plan to lay low all weekend. We'll see how that plan goes....
I wonder if the cancer is pressing on my spinal cord?? I can't chalk it up to low blood pressure, or whatever.
Linda, I wish that right existed for everyone everywhere. I know only a few states allow it in the U.S. I'm not there yet, but I would love to have that option available to me if I was. I already told my kids I don't intend to continue with chemotherapy. I had quit in March and only managed another 1 1/2 weeks of it since (before the infection was discovered). This radiation is palliative. Enough is enough already. I don't want to linger and wear diapers. I've lived a good life and my beautiful, amazing, tender-hearted kids are my everything, my heart and my love, and I know they're all going to be ok. They're awesome beings
Hope everyone has a good weekend...
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Hortense - I don't check in here very often and never respond, but I have to say I am so sorry you are where you are right now. There are so many familiar names and faces, or in your case back, that I feel confident I'll always receive thoughtful advice and words of wisdom. Your post makes me very sad for you and your family, but really, every time I see news like this from any of our members, I keep wondering when there will be a cure. I hope you have many many more years than suggested or at the very least, you are comfortable and have a good quality of life.
Amy
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Sky, I'm sorry to read of your recent trials and tribulations too. That must be scary for you but even worse for your daughter. She sounds like grace under pressure though and that you've done a great job raising your children. You must be so proud.
Amy
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Sky so sorry it was b so scarey 4 both of u....thinking bout u
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Blondie, I sure wish I were closer so I could come and sit with you for a while. I would go crazy if I had to spend too much time alone. Some days I don't even want to watch t.v. Sky, you are so fortunate to have raised adults! I have to say I'm not at all comfortable with where my kids are at this stage of their lives. They are not young (33, 34, and 39) but not exactly responsible ... If you know what I mean. I know that they have to make it on their own, and I have stopped all forms of enabling, but it would make it so much easier for me if they would get their acts togetherness! Not sure I will live to see it .... No matter how king I live. lol. BTW, your seizures sound so scary. Hope they can find out the cause and fix it!, thinking of you all. ....
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Thank u miss gator. I would love that and my kids r 40 37 34 and the twins are 21 the lube with me the others live closer , they r no help. I enable also
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Sky...I was glad to hear they didn't think it was seizures...but then to have it happen again is so frightening. I'm glad your daughter was with & acted quickly. Do you live alone? I hope they find the cause & can prevent more episodes.
Gator & Blondie...add me to the list of enablers. Our kids are 41,39 & 36 & I'm lucky to say only the middle child (of course) makes life a little too interesting. They, and spouses, witnessed & helped with the end of life for my mom & have gone through the process with multiple older family members. I'm sure none of them want to admit this is real for their mom. I wish there was some way they could get you out and about, Blondie.
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I had my fifth, and last, brain zap yesterday. I met with a radiation oncologist afterwards because I wanted to make sure my complaints about these "episodes" were recorded. Again, he suggested that I was reacting to low BP, dehydration and/or a combination of pain meds. I felt like I was banging my head against the wall in futility! I could see my voice was not being heard, so I again reiterated, I wanted this recorded in my notes, and I left.
Today, I saw my oncologist. My daughter took me to my appt., and we barely got inside the medical building when another "episode" occurred. She called out for a wheelchaitr, and they quickly got me settled in. I started bawling. Turns out I wasn't on the schedule either! Somebody dropped the ball, but it wasn't me. I wouldn't just make up a random time and day to see my doc!
Eventually, I got to see him, and I explained very clearly and succinctly what has been occurring regarding these "episodes". How they start, the sensation, frequency, duration, what I think it is, and why I think it needs to take preferential treatment and attention.
He sat and listened to me. He said, you're right. We're ordering a MRI of the cervical, thoracic and lumbar spine stat with/without contrast. This was at 0930 this morning. By 1600 today, I was having all these tests accomplished. The reports should be reviewed tomorrow.
It's been a long and exhausting day. But, I feel like at least we're on track to discovering what is going on. I ordered a walker and a wheelchair today. My daughters got me a shower chair. We've decided I am no longer driving, swimming alone, running my own errands, or going anywhere without assistance.
This disease just robs you. It robs you of a little bit of life everyday. But, I try to remain grateful and thankful for every little bit of life I have left, and for my wonderful daughters. My youngest daughter today, admitted for the first time, that she knew I was at the beginning of the end about a month ago. She said, suddenly I seemed so thin and fragile. My walk was different, and she just knew. My oldest daughter is still holding out hope that I'll bounce back. I always have before...,
I'll update the results in a few days
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Oh Skylotus - That must be scary indeed. Incredible how we have to be our own advocates. Hope you get good news today and find out what is causing those episodes. You are in my thoughts and prayers. Just wish I could do something for you. Glad your daughters are taking such good care of you. Sending lots of love and hugs to you and daughters.
Blondie - how are you? saying hi
Calico - I'm worried about you but hope you are filled with love and comfort.
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Skylotus,
I'm so terribly sorry that you're going through this. And there's nothing worse than being passed off, or not listened to!!! Your episodes remind me a bit of what happened to me before my stage iv diagnosis. The doctor was convinced I had an exercise related injury that would work itself out. Well, soon after I was breaking out in sweats and had trouble walking. I finally had an episode where I fell in a parking lot. Turns out my spinal cord was compressed at T5. I'm so glad you're getting that MRI so you can either rule this out, or proceed with something to relieve you.
Your daughters sound like angels. It must be so scary for them too. I'm thinking of all of you, and hoping you have some answers very soon.
Sending love,
Rose.
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skylotus,
Gentle hugs You have wonderful daughters and prayers for positive outcome from all tests
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Sky,i am so happy that u r able to relay u wants n needs so eliquently (sp). The dr listened awesome. Yr daughters unfortunately are learning about things that they didnt know they had to worry about. Leaving our children n grandchildren of breast cancer as our legacy is heartbreaking BIG HUGS TO YOU N UR FAMILY.
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Hi lovely ladies!
Well, we got the results back today. The cancer has settled in my spinal fluid. I'd have to get up to get the official terminology, but, in essence, there is nothing more to be done. There is no treatment, no chemotherapy. They're not going to do any more tests, or scans, or blood draws. I can try radiation to the spine, but it would be palliative at best. I'm supposed to contact hospice now. It sounds like all the things I did not want to happen, are all the things that will....wheelchairs, incontinence, Depends, loss of mobility. This just simply sucks. My daughter kept it together, I was a blubbering mess. I only hope I don't linger...that is my hope.
I remember shortly before I stopped posting here in January, a fellow BCO commenter had just found out a similar fate. She wrote she still had filing to do. So do I. I still have filing to do.... My daughters want me to move in with them.... And I'll wile away my days sitting in their house while they're at work?? What to do? My doc said it's not a good idea to live alone any longer due to expected falls.
It doesn't really make me feel any better to have been vindicated. I knew I was right, that I was being "dismissed" by the radiation oncology team about my concerns. But....I did express them nonetheless, and that was key for me to get across. Knowledge is power. Communication is key. I read, and read, and research, and then discern what information is key and relevant to me. I hope, if nothing else, through reading my posts, that point is noticed.
I updated my caringbridge blog, perhaps for the last time. I shared my story starting from the beginning, when I was diagnosed 17 years ago. I wanted to share my experiences, strengths, weaknesses and fears. I may have "rubbed" some people the wrong way with my "swashbucklin' goddess warrior princess"' self-imposed title, but I preferred that over "survivor" and "forever fighter." And besides, who is anyone to judge when we're all waging the same battle in the end?
My fight is over now, and I'm still crying. My challenge now is to figure out the days ahead and make peace with what remains.
I really was hoping it would just be a compression fracture. I guess what I have is fairly rare in the grand scheme of things. Lucky me....
I'll be checking in, probably on this thread only, and the quotes thread. I'm still unloading all those saved quotes in my fone...😉. I guess we'll see how far I get...I think I have about 50 or so more.... Well, that's enough for one day..... Peace.
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Awww sky. I'm so sorry. I'm glad you know and can do what you need to finish. Please check in here as long as you can. I love your quotes!
I hope someone calls out the radiologist. Wishing you peace and strength. Start having cake for breakfast.
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Zills, that is sooooo funny!! After my daughter and I got the news....
The correct term is: leptomeningeal metastases, we ordered 3 slices of homemade tiramisu cake from a local Ethiopian restaurant! I agree! Eat cake!
This is what I came up with after being awake almost all night:
"This is the "key term"
Leptomeningeal metastasis/metastases
That is what I have.
I think it's important to spend as much time with me while I'm still
NORMAL.
Especially for the kids.
I know you want to protect them, but it's better they see me and spend time with me before this advances.
I want to take it day by day, step by step, moment by moment.
We'll figure it out as we go....we're all new at this....no one is a pro.
Least of all me.
We can have constant dinners here, of the "to go" variety, and try to get as many LOL's in as we can.
Any questions you have about family lineage, etc., nows the time to ask....
Anyone is welcome to camp out here anytime.
Just gonna have to rough it...like camping.
It's only gonna be a few weeks, 4-6 seems to be the standard course, so, we can get through this, without causing too much upset over the next couple of months.
I'll do my best to be as strong as I have been the entire time, and we'll go from there....
😘😘😘😘😘😘😘😘😘😘😘
That's all I've got after thinking about it all night....😍😍😍😍😍😍😍😍😍😍😍"
That's all I have so far....
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sky,
Gentle hugs coming your way. You are amazing!
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