Facing the Future
Comments
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Well said EWB My new phrase. I don't have the luxury.
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WOW! Did we NEED this thread or what????? Look at all the ppl & posts in just 48 hours- HUGS all. Well said, EVERYONE!! This IS the place where we understand each other! I'm gonna have to start taking notes so I remember who said what---but THANK YOU all for being real & being here......
I have always been pragmatic-call a spade a spade. I have told my kids a small but unvarnished thruth since my mets dx (they were 11 & 13) It is not easy, but in small doses they "got it" & so did I after about 2 years of practicing saying---IF I AM here....
Vacation of a lifetime---or life? WHO knows? DH & I had this discussion earlier as we are trying to decide if we should all go to Ireland or save the few thousand we have left for the unknown future...what if this is my last summer? Then..what if it's NOT?
Take everyone to Europe & make memories that will last forever, or buy my companion spot for our urns in the cemetery? (which CAN be resold in most places as I understand it) I just don't know the answer to this one....
I agree with the attitude that this thread is NOT for everyone & if someone doesn't like what we are sharing here they can just NOT READ here!!! Do NOT edit yourselves. We NEED each other & we need everyone's truths........
I just had a very happy happy day celebrating my 5th birthday since mets dx! May we all have more birthdays, understanding from others, easier tx & better days. I know my days are better cuz of all you!
Hugs---be well & stay strong
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Thanks so much for starting this post. At my live support group I feel like most of the women don't want to talk about the hard issues. The financial and practical issues are one thing. I am very worried about making sure that my husband understands I want hospice sooner rather than later, that I probably can't die at home because he is totally blind and who will take care of me? I don't want my kids to do it.
But the other pressing issue for me is dealing with the fear of the dying process and then actually dying. What kind of debilitating physical issues might I have to deal with before I die? Will I be able to handle it from a psychological standpoint. How will I keep from losing it. I have already lost part of my voice and my left eye doesn't open properly anymore.
I am not really religious either. Our rabbi says that God gives does not make bad things happen nor will God make them go away, but that your faith can give you strength and get you through. I pray that I have the strength to make it through this. I hope no one gets offended, but if it wasn't for needing to collect life insurance, I am not sure what my end of life decisions would be.
Hugs to all.
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Pookie,, i had the very same thought about collecting insurance for my family and end of life decisions. It makes me feel better to know i'm not the only one who has thought about things like that. Thats why i feel trapped at times. I have no control over what i want to do either because theres no solution to this disease,, or the solution I might want will screw everyone left behind. I also have the exact very same fears. Can i handle this. I find myself imagining how it will be. Gasping for air or something like that... Maybe not allowed to have any more morphine,, and suffering in pain. I think if i could know i'd die painlessly,,, I would be more brave.
Tell me something. Has anyone here had their family doctor call to see how they are. I'm far from bed ridden,, but my doctors secretary called twice. The first time i said i just had chemo and wasn't very well,, feeling crappy etc. She called back today and asked if i wanted the doctor to do a home visit to see me. I was shocked. I know he's the most caring doctor i've ever had,, but this was very odd tome. I told her i was still driving and could come in on Thursday regarding anti depressants... so thats where i stand now. Is this normal for a family doctor in todays day and age. seemed weird
Lynn
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Saint,
Since I'm the one who made the editing comment, I wanted to clarify a little bit. I don't mind if my family/friends read about what was going through my mind, how I felt, etc. but there is one particular person who is very close to me that I just REALLY need to talk about sometimes. There are times when I'd like advice and input about dealing with that person, but I worry about leaving questions that I won't be around to answer.
Pookie,
About the dying process...I have lots of questions about that too. Have you noticed that in books and movies when someone has cancer, they just go on living their lives as usual until a week or two before they die? I can't tell you the number of Lifetime Network and Hallmark films I've watched where the supposed cancer patient is just fine with a full head of hair until they finally succomb--always remaining completely lucid (and unbelievably profound) until their final moments. I have a link somewhere to a hospice site that gives the "straight poop", but have avoided reading through the whole site. (BTW, if anybody wants that link, I'll be glad to look it up and post it). Anyway, my worry about the process, aside from the usual concerns about pain and loss of dignity (diapers, etcl) is not having all my mental faculties under control. When I was in the hospital with mets fractures, I was pumped full of pain meds. I can remember lying there and hearing someone talking and realizing it was me. There was like a total disconnect between my thoughts and the things that were coming out of my mouth. I didn't say anything extremely hurtful or horrible then (that I know of--I have partial amnesia of that hospital stay as well), but I did say things that felt like they just spontaneously fell from my mouth without any thought or instigation on my part. I worry that I might end up hurting my kids if the drugs cause that sort of thing to happen during the dying process. There's no real way to prepare for that other than refusing drugs and I certainly don't want to do that. I guess you don't hear many people talk about someone having said horrible things to them as they were dying....but does that mean it didn't happen or they just don't want to talk about it?
I am so glad you started this thread!
(((HUGS)))
Diane -
I think you are blessed to have a family doctor call. I sometimes feel so left out in the cold. When I found out I was dropped from both the trials I wanted, my oncologist was very sympathetic. I just felt so alone.
Here is another new one...Dh and I haven't had 'you know' since my mets dx. (aka June). I feel like we need to reconnect. I am scared. Maybe he doesn't want me that way. He is pleasant and smiles and is compasionate. LIke we are good friends. So should I leave well enough alone? I would like to have a s*x life again. Last time we had to 'restart' it hurt like hell for a long time...Do metsters had active s*x lives?? Hell, I hit my prime when cancer struct.
Oh, I had to have this talk with my Boss last week. He wants me to take his job when he leaves (next year or so). I have misgivings because of being stage IV. He said well you beat cancer once you can beat it again. I did say I still have active areas. But I didn't come right out and say, Yeah, but I am TERMINAL. It was a happy moment that I am being considered for this big promotion. (CIO) But sad, that my dream job is f*cked because of my health.
Man...I gotta lot of crap to spew! LMAO
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Florik,
Family plot is the gravesites at the cemetery. A group of them together. Our cemetery asks that if possible you place the plots in more than one name ..such as ours are in my name and my daughter's. They are completely transferrable. I actually already transferred one so I know it can be done. Hugs, Mazy
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Diane, someone just posted about the movie 2 weeks. It goes through a process of a woman dying (Sallie Field) of colon cancer. Very well done. I recommend it. I want to go peacefully. Not spewing and sputtering. I think for most BC patients, it is an easy end.
I have 'freak outs' that I am like the daughter in Terms of Endearments and that scares me. The scene with her boys...
Like an idiot I watched STep mother in the hospital during my mast...bawled like a baby. Last hospital visit..Wizzard of Oz. Much more acceptable.
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That was my post about the movie 2 Weeks. It is good movie, it touched on alot real emotions...I admit, some scenes were a little off beat, like the Rabi shouting "You will be fine" to the woman on her deathbed, I guess they tried to put a bit of a comic twist on things.
I set up a meeting at home to see about setting up home care for my mother not too long ago, in preparation for myself heading home for a week at spring break. The meeting was going great until the case worker starting pulling out pamphlets about Community Palliative Care, aka hospice. Thats when I noticed mom getting annoyed...she told the guy to just leave the information and thanks for sharing. I haven't looked at them yet, but I know they about proxy's and health care directives. I found a website, canadian virtual hospice and book-marked it. When the time comes, I will arm myself with the information I need. At least I now know that we have "hospice" in Canada, I was a bit concerned about that. I'm not even sure if mom wants to die at home or the hospital? Never thought of that until now, I just assumed she would be at home. One thing that I know for a fact, is that her passing will be pain free, I can guarantee, no doctors in their right mind would stop pain meds. I silently hope, that when the time comes, mom will just drift off into a peaceful sleep.
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Fitztwins.. I understand totally the sex thing with husband. I have faithfully pulled of at least a once per week schedule since the met dx. Before that it was about 2 or 3 times.. but lately i just lay on my side so i don't have to do much. We call it lazy sex. lol which is fine by him. Its hard though. They had given me some radiation for pain to the pelvis back in october and since then its painful and i use alot of lubricant. I don't even tell him it hurts isnt' that pathetic. I'd rather lay there and suffer than let him know its not enjoyable. But the way i look at it,, this could be painful for him,, not being able to be physical with me,,, so if i can ease his pain like he eases mine,, i'm happy to do it. But i do try to avoid it as much as possible. lol
I have noticed something on this thread. I think many of us are at different stages of this word "terminal". I notice some of us are still working. I went off on disability when the met happened and i knew i had to go on chemo. How can many of you still work. I spend most of the time laying down,, just trying to cope mentally and physically. I want to work,, but theres no way i could have kept up to the schedule etc. plus the aches i sometimes have are like severe flu symptoms. Whole body tooth ache i call it. The stress of not knowing if i'd make it to work each day would overwhelm me. I was in payroll and it had to be done on time live or die so to speak.
Hats off to those of you still bringing in an income. I think hospice care is a long way off if your still able to carry on with life that way.
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Returning to a point that I think we've all made....re non metsers posting on the mets board. Since we're all a bit uncomfortable with this for one reason or another, should we ask admin if we can have a locked section for stage 1V only? This could be an additional section to the existing one-"for stage 1V only", or something similair. I'm a member on another forum, based in the UK and this is how the forum is organised, and it works well.There are boards for just about everything else, so why shouldn't we have a section to which we can retreat and know that we'll be in the company of those who are in the same situation? Realistically all we can responsibly post to the interminable question "could this be mets?", is "check it out with your onc". As someone said, we don't have the luxury nor reserves of emotional strength to keep dealing with this on a daily basis.
So...shall we ask for our own board, where we can be open and honest expressing our fears and nightmares, knowing that those reading are in the same situation? Personally, until we have some form of privacy,I-and perhaps most of us- will hold back for one reason or another.
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Boy I thought I was the only one who had these feelings. I finally has to sit dh down and tell him to get his head out of the sand I am going to die. He tends to run off and do outside projects from 7 to 5 or 6 at night. I told him I was fine with that as I do not have much energy to get off the couch. I was planning on going back to work in jan part time and relised it just wasn't going to happen. I have taken out accelerated death benfite and plan on spending it before I go. I have my advance directive and DNR filled out and given to all my doc and one to the dh to keep handy if 911 is called. The only thing I requested is pain meds_ morphine I do know that 2-3 shots of it and you got to sleep as this is what we did for my mother. I just lost my brother in oct to kidney cancer. that was when the reality of mets really struck home. I looked at him and could see myself there. at that point I informed my dh and ds that they had 24 hours to get everyone together while i am still able to talk after that to bring the drugs on and let me go..I think most people who have seen death has a good idea when it is going to happen. I do not want to be unconusion(sp) and be seen as a side show. Everyone in my family needs to get it together now while i am still here or forget saying it when i can;t respone. This is a thead that is sorely needed. Oh what sex I just had my birthday on sunday and thought ok I will try this last time was in dec. go to take a bath and there i blew diahhera. there goes that idea will try again in a few more months...maybe
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Thank you dreamwriter for this thread.
I am a 62yr old mother of 3 sons + 1 daughter, who has been under this shadow since '95. After the first five years, I mostly forgot about it. I have no sisters, aunts, mother or close friends to whom I can talk about my fears. When I was diagnosed last Nov with extensive bone mets, I thought, right up to the day I first saw my Oncologist, that I probably had arthritis. Boy, did I have my head in the sand.
On that first visit, before we even sat down, she said, "You have incurable bone metasteses, but we can control them." My GP and the Ortho surgeon before that would not even say the 'C' word. I have spent many hours at this keyboard since then, searching for what, I'm not quite sure, even yet. After the first month, my DH informed me that he thought I was spending too much time 'in these places.' I got the feeling then that he was metsed out. So I have to ration out my talking about it.
In '95 we didn't even have a computer to search with and when we finally did get one in '97, I researched for my daughter, father-in-law and members of my local support group. I did not once look up BC on my own behalf! My DH works away from home on a ship so all appointments, mx were/are made to coincide with his time at home. I realise that he is having a hard time dealing with the reality that in the near future, he will be the primary carer for our daughter, as well as being 'alone.' Although, going by the male side of his family, he will probably have a new partner within twelve months.
My best friend lives about three hours away by car and I don't see her very often. My husband can't stand her husband, even though we two women met because our husbands worked together once upon a time. We phone occasionally, but don't seem to be able to have a good natter the way you can when face to face. Anyway, Bev, has a S-i-L who has been going through this bone mets hell for the last 7 years and is now on morphine, but still working. I had a chat to Bev after xmas and she then wrote me a letter where she told me to get done all the things I wanted/needed to do because I probably wouldn't be able to enjoy doing them at certain times. When I read the letter a few more times, I realised that she had heard me telling her what I was telling my family, trying to keep all their chins up and she thought she had better warn me that I was going to go through some hard times. She also said that I should be 'careful' when I was doing things around the house as I would probably end up breaking bones. I should leave tough jobs like hedge clipping and lawn mowing to DH. This letter could have been a real downer but I took it as a loving friend should, and replied with thanks. I don't think I could ask for a better friend.
I seem to be mostly pain free, apart from some residual stuff, at the moment, but I know this will change, sooner or later. When it does I am going to demand help when and if needed and I refuse to die to some elses format. If someone makes remarks that are over the top I will tell them so, at least they will remember me for that, if nothing else.
My son, no 2, is getting married in May, only decided after my second dx, and I am happy that I will be here to see that. Whether I will ever see my first grandchild though, is another thing. It is quite frightening, when that sneaky thought pops into your head, that maybe you won't be here next xmas. My whole family came here last xmas, the first time in many years and, at times, I found myself just quietly listening and enjoying all the chatter, rather than trying to entertain them all day long.
That's enough for this first time, thanks ladies.
Sheila
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RE: Non-metsters, I don't know if blocking them is the right thing to do. Yes, it would make it easier on us. There are some folks I don't want to shut out. Many friends I made when I first came to the site.
Realistically, it is the 'is this mets' or 'I am so scared that I could go to stage iv' that are hard to take. Seriously, it is like all the other things that people say to us. We have to inform and shrug it off.
But you are right, it gets tiring seeing these posts.
I benefit the most from the real conversations that we have. About life and kids and doctors.
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I had tried working for about 6 months after dx. Went from way more than full time, to fulltime (40hrs/week) to part time. By the time I "retired" aka went off on disability I was so tired, dragging my self home after 4-5 hours at work to tired to make dinner and getting myself to bed at 4pm. Knew I was starting to make mistakes at work. It has been much better since I have been home, although just recently do I feel settled. It has taken a while to not feel like a failure because I can not work, my dh has been wonderfully supportive and had wanted me to stop working when we got dx. Luckily I do not need to work, we are managing ok financially and get benefits thru him.
The pain I have is mostly from meds SEs rather than from the cancer itself. Decided thatI would persure pallative care, not hospice, but management for the pain. Pain meds have made huge difference and I am looking at other things to help as well.
What frightens me most is that the drugs will stop working and the cancer will progress. I know that I am still on the first course of treatment and there are other options but... I worry about when that will happen, how it will happen, what will happen to make us aware of the fact that the drugs are not working. The unknowns I guess.
hugs and prayers to all
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While I was on Taxotere, I couldn't work full time. I tried. 1/2 through treatments I was too tired to work past 2 p.m.
I am just on Herpcetin and Zometa..so I am fine now. If I have to go back on Taxoterrible, then I might look into LTD. The crap was pretty depressing too.
Janis
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I am still working full time because we desperately need the money. Luckily my job is nonstressful and not very demanding, but I am very bored. I feel trapped but am also afraid to change jobs because of the health uncertainty. On the other hand, spending 8 hrs a day in something I hate really bothers me, especially now.
I found a great resource yesterday. It is a transcript from a recent conference of young breast cancer patients that was held in Dallas. This transcipt is from a session on end of life issues. It deals with everything you could think of, and there is a nurse that moderated who is very knowledgeable. It is somewhat hard to read. The link is:
http://www.youngsurvivorsconference.org/documents/LBBCendoflifeconcerns08.doc
I can tell that my husband gets tired of me talking about it. But I am feeling more and more that I need to get this show on the road. I think I am a control freak to some extent, and it is hard and scary to know that I won't have control at the end. But I will feel better if I can get these things done. So that will mean some heavy conversations. I just worry that when push comes to shove will my husband be able to do what I want.
I am also preoccupied with saying the right things to my daughter in the journal I am keeping. I have been readling a book about daughters without moms. While this is painful, it has given me some ideas about areas I might want to cover. My husband has also given me some suggestions.
Peace and hugs.
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Pookie, just write from your heart and it will be exactly what it should be. What a lovely idea, something that will be very special for her (many yrs from now!)
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Hey all,
I was diagnosed 2 months ago and have not been able to do any chemo due to SEs. I really need days to leave this crap behind and not deal with other people trying to deal with my crap, if that makes sense.
My mom and dad flew out here for a month and are trying to help out. My kids are 6,11,13,17. The oldest one knows this is serious, the youngest just is happy I still have my hair this time. I am trying to balance how much they need to know and how much more they need to be kids. I am more afraid of the bad lingering, you know, mom dying for years and the emotional trauma of that. But, I think for rightnow, they can just be kids,,,
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Pookie,
Thanks for posting that link!
(((HUGS)))
Diane -
Ohhh ladies thank you so much for this thread..I have thought of all of these things so many times, and never really found the right place to talk about it...I have so much to say here, but will try to keep each post "relatively" short, but post often....I don't think any of us really want to stand at a poduim and shout "Hey I have stage 4 b/c and I'm dying.." but we don't want to be "sssshhhhhsssssed" either...I think that is one of the things I find hardest..No one wants to hear you say you are dying...I get sssshhhhed by my mother in law, by my friends and by family members....I've even had someone say to me "You make stage 4 look good..." WTF is that supppose to mean????? "I'm only stage 2 and don't look at healthy as you"....are you kidding me???? My answer has been," well I wish I was made of clear glass and you could see my insides...."
There is such a fine line between scaring your children and informing them..My son just the other day said something about me saying I wouldn't live to see him graduate college..He is now in his junior year and I probably will see him, but when I said it he was 12.(.I had just lost a good friend to b/c and my mother was dx with mets) .I guess that really stuck in his head, and of course as a mother I now feel guilty that he has carried that so long..
I find there are days that I do want to go back to work, just because I find myself saying ":Is this how I want to spend the rest of my days.?." The problem is I don't know how I want to spend the rest of my days,..working?? certainly not cleaning my house every day for no reason (but that's what I do..) I feel like I am roaming , looking for an answer that will never come..I feel like I am running out of time,and no one understands me...I certainly"feel " differnet, and my scans haven't been bad lately but something is going on..I have a feeling my death is going to come quickly..
A friend from here once asked me, why do we seek out friends on the boards ?? We certainly all have friends in our lives,and family, so why do we have this need to have the friendships here?? She really didn't have the answer and neither did I, and I have thought about it so much, because you ladies do mean so much to me..I think this post may have just answered it...I think because I can come here and say what I'm feeling, that I feel I am dying, or that I am scared of dying, or that having stage 4 sucks so much and I don't want to be told I'm fine by family members...I watched my mother die of b/c, and I know what happens..I hate having to put on a happy face when my insides are slowly shutting down..
Okay I said I wouldn't rant on but I did..I have to say that felt really good...I think this is the best idea ever ..I just hope it stays and is helpful to everyone here.....Huggles KLynn xoxox
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I've just lost my cool on the mets board. I swear I'm going to limit my time there from now on,as it's turning into a "help me diagnose myself" forum...
Am feeling very vulnerable today for some reason-why? No idea. I feel physically not too bad, and managing the treatment (tykerb and xeloda), not too badly. But I think I'm still partly living in denial land. I was diagnosed Nov 2007, so have known for a while the road we are travelling. But somehow, part of me can't quite believe it....Perhaps it's because I can cope with the treatment at present, and still lead a reasonably active life. But out of the blue, like a tidal wave I get the feelings of utter helplesness that frighten me rigid. I've never actually done the "angry" phase. Yes, I felt and feel anger, but didn't spend days raging about my fate-I rather retreated into a coccoon and stared at the walls. I'm sure that I have loads of pent up emotion that I need to release, but am holding onto it-not consciously, but just as a way of trying to exert some control over the disease.
Maybe I could do a bit of practise anger here? I'm sure you'd all understand, and I guess that most of you do/did have anger? I think I'm so focused on protecting my family, that I'm frightened to let go for fear of what comes out....
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Pookie, Yes, thank you for that link. I haven't finished reading it...but great stuff.
Concerning the working discussion. I am on disability. I was working very part time at a vet's office as a receptionist until a couple of months ago. With some progression on my scan's in December, we added tykerb to my treatment regimen. After stopping and restarting a couple of times due to horrible diarrhea, I think I've gotten a handle on it by taking lomotil three times a day. However, I am so fatigued, I just don't feel like going back to work. I miss the interaction with people. My hat is off to those of you who work...especially full time. I think it was Elaine who gave the way I feel the perfect description....battle fatigue. Although, at this time (expecting this to change after scans in a couple of weeks) I haven't been on rough chemo. But I am just physically unable to work. I am trying to use what little energy I have to do the things I WANT to do. I am fortunate and so blessed that I do not have to work. If I could wave a magic wand, I would want that to be the case for everyone here stage iv.
Going back to the 'battle fatigue'. One time on a treatment day, I was having a very down, emotional day. My favorite infusion nurse hugged me and said some things that validated my feelings. She said, you been fighting this disease since 2002. Over seven years...over five of those with mets. She told me how hard that has been on me...physically, mentally and emotionally. Out of the past seven and a half years, only six months were without being in treatment. I am tired of all this. And to know, as I am having progression, I will have to start even more difficult treatment therapies...sometimes I wonder if I going to be able to do it. So do the chemos/treatments stop working? Or do we just become so battle fatigued and sick of it all that we just give up/give out?
Keeping it real,
Bethie
BTW, there are so many great things being discussed here...I will be posting more to address them. Especially dealing with family. I'LL BE BAAACK!
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It's amazing how many of us feel the same way about the Mets board! I've gotten to where I don't respond to those fishing for reassurance that their hangnail is not BC. There is a thread for 'Not Diagnosed but Worried' Maybe they should post there. It just seems wrong that we have to cheer people on hoping that they dont' turn into one of us. Then cheer them even more when they come in to say, never mind, I'm fine. Then we never see them again.
And while it is nice for people to support you, I've felt like a freak at the zoo lately with so many non stage four people coming in for a looky loo and telling me to keep my chin up. Not that I would ever do it, but maybe I should go to the DCIS forums and ask them if they've gotten their wills together yet.
Sorry I've rambled but I'm just in a bitter place right now! I've been sleeping a lot and have the Tykerb trots. ugh.
I will be back later, just wanted to say hi and thanks for the thread Dream! It's just sad that we had to be booted off of the mets board to have it.
Watson
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KLynn,,I've feel exaclty as you and quoted you below. A ccept my sincere hugs. I'm your sister on this one and will stand with you. We have miraculously become one.
I feel like I am roaming , looking for an answer that will never come..I feel like I am running out of time,and no one understands me...I certainly"feel " differnet, and my scans haven't been bad lately but something is going on..I have a feeling my death is going to come quickly.
I'm going to go look at .Pookies post
As i said earlier,, keep it real ladies.
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okay, here I was feeling all warm and fuzzy that my mom and dad are here for me. Here's the pissy part, sorry to whine, but I found out today that the omly reason they are here is that for some reason they thought I had 30 -60 days left. WTF??? This is my vent, because now they are planning to go home ASAP. That kind of makes me feel crappier, as if I am not sick enough....lol..guess there could be worse things then not being sick
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Thanks Lynn...Hugs felt..
RanD, one of my favorite quotes is ---"A real friend is one who walks in when everyone else walks out"--ANON....
You're right though, kind of nice to not be sick enough..lol...
Watson sorry to hear you are in a bitter shi**y place--being on the toilet for hours will do that to you.I had the same with Xeloda and never really found anything that worked for the trots...I too hate the "chin up" cheerleader rah rahs, but I think sometimes the people around us don't know what to say..
Great thoughts here ladies..Huggles Klynn xo
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This thread was merely a place to voice our thoughts about our deaths that will be sooner rather then later. The mets thread has its place. The only reason I opened here was that Palliative Therapy/Hospice Care would have fewer non stage 4s stumbling on it and getting all upset.
Its also a place where anger and not being positive are totally acceptable. Could we manage that without trashing others? Otherwise we become just another bitch thead. And this is real for real people.
When I think of death, I have this eerie feeling travelling my spine because I have stepped back from religion in my early 20's and have had no desire to return to it. And even if I wanted to, I would feel like a hypocrite - I only belief in God because Im dying.
I have found a world of love here. Wats, Saint, Aus..... old friends and look at all the new ones.
I dont have much family - but I have a boatload of very very good friends. Some of my friendships span 25 plus years (3). Many are within the last year. And every one of them hold me together. My therapist says that when I am lying in a hospital bed (in a diaper) unable to talk, eat or whatever, that I am to remember all of those friends holding me with love. Wow. Its gotta be some big bed. But she is right, the number of sisters here is astronomical. My husband has been jealous of my ability to find friendship.
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Love ya too, Dream.
My post was a bit in the 'trashing' vein. I really didn't mean it to go there but I guess I was trying to express that it's hard to say what I really feel lately knowing that the majority of my responses would be from well meaning sources that yet have no real clue.
I've been thinking about how I want to spend the rest of my days lately. Just like I'm de-cluttering my house, I'm trying to de-clutter my thoughts and feelings about all of this. I've decided to diminish the fluff and bull caca in my life. No time or reason for it.
I'm still a relatively positive person. Today, not so much with the bathroom issues and OHHH my itchy rash on my legs. I'm about to lose my sunny disposition. haha
Thanks,
Watson
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HUGS sistas!
I think the "trashing" is somewhat necessary venting--if-ya-can't-say-it-here-where-can-ya? sorta thing, but Dream is the gracious hostess who points out that by doing that we digress from the subject(s) at hand & I thank you for the tender hand slap, my sista-friend!
Dying: I believe that just as we can WILL ourselves to live far beyond expectations we can also WILL ourselves to make a quick exit--- I KNOW my mother did! I also take comfort in knowing Hospice's gift is death with dignity & pain meds that let you sleep/slip away....
That being said I still have anxiety about it.....I KNOW that progression is assured! I KNOW tx will fail! Having experienced sleep apnia I KNOW how it feels to wake in terror cuz you can't breathe.........how do we fold this into day-to-day living???....and dying?
Work: If you want/ need to & are able then go for it! IF you are offered a promotion---WHO can say you won't still be doing the job until retirement??? WE have the same rights we EVER had! We have a right to work if we are able. We have a right to be happy in how we spend our days. NO ONE takes a job knowing how long it will last! We can't say when it will end.......take that promotion!
Family fears: We are all different--but if you NEED to talk about your demise (& I think we all do!) then you need to do it & damn the torpedos! They NEED to hear it! I am not proposing that you shove it down their throats, but gently lead them to the trough. I know they need to talk about it, too. IWith my family that proverbial elephant in the room will shit on everyone's shoes & no one will mention it (tho some will hold their noses) unless MAMA speaks up.......
Sex: can't remember who wrote about lazy sex (sorry) but it touched me. That you can still do that FOR him--what is married love about if not that.....as I have told my kids--when you love someone sex is not about being pleased, but pleasing....can't find that post--but BIG hugs to you!
Terminal: I think this varies from person to person, but my experience has been up & down & up & down & up again....so who knows WHERE we are in relation to each other? I just know we have lost sisters here that seemed to be hanging on one week & were gone the next---besides missing them it sorta pulled the rug out from under my sense of well-being........I used to feel safe every AM saying. "I have 6 months from today..." I'm no longer confident of that.
Planning: I think many of us are, or were, control freaks. I am learning: once I'm gone I can no longer control ANYTHING! I have tried to manipulate things for almost 5 years hoping that once I am gone this or that will or won't happen. Just recently I realized ---I DO NOT KNOW WHAT IS BEST FOR THEM AFTER MY DEATH!!!! Acceptance of that has given me a peace I have not known since my mets dx....
As of yesterday I am eligible to take my retirement in a lump sum (it's not much--only did that job for a few years)...so I wonder if I should bank it, buy the plot or blow it sky high on some family fun!
Did I miss anything???? HUGS Be well & stay strong
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