Facing the Future
Comments
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Saint, I vote for family fun! Making those great memories.
I have a friend who is a Presbyterian minister. We've talked about death and dying some. She said something to me that was an AHH HAAA moment for me. In Psalms 23 it says, 'Even though I walk through the valley of the shadow of death'. We really focused on the words 'walk THROUGH'. A passage. It is the process of death. It furthered my belief in my soul's life after I die. I know some do not have a faith based belief system and I am NOT preaching. But I have so much comfort in my spiritual walk with God. I am not a most religious person...but I am spiritual. And anyone who denies being afraid of dying, I think they are not being truthful perhaps with even with themselves. I am not afraid of being dead. I am afraid of the process. Walking 'through' that valley of the shadow of death. I have been with a couple of family members when they died. And my experiences were peaceful events. But it is scary...thinking of MY death. Fear of the unknown. Because the people who died were seemingly unconscious. But what are they feeling?
And of course, what is the process of my death going to do to my daughter. She is 28. But we are very, very close. I know she is too dependent on me...emotionally. She doesn't want to talk about my death. Says she has horrible nightmares of me dying. I am really trying so hard to get her to talk with a professional about all of this. Because I don't know how to talk to her about it because she gets very upset or just shuts down. So I am seeking professional advice and hope to convince her to either join me in therapy or go on her own. I went to a new psychologist last week (been in therapy before...but realize now is a good time for me to be back there) and it was not a good 'fit'. Don't think we are going to 'jive'. So I am looking for someone preferably with cancer patient experience.
Keeping it real and loving all of you,
Bethie
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I have been a little spooked lately how some of our sisters have 'gone' so fast. Active posters, then boom...gone. Did they know they were close to end? will I know?
There have been a few ladies that have gone very quickly...I can think of a few. That scares me. I am afraid of dying but I hope that it will be the kind where I just fall asleep, see that bright light, and find family waiting on the otherside. (Yes I believe in this concept).
I have done some reading on life after death, and Allison DuBois (Medium fame). It has given me comfort.
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HUGS Bethie!
You reminded me of something I love to think about: What glory will meet us? What will paradise be? What will the crossing over be like? My sister is NOT religious OR spiritual, but she has told me she is happy to imagine it as the ULTIMATE adventure & looks forward to the "AFTER" death part.......so do I. We might add some lightness to this thread by sharing what we think/hope it will be..... or shall we start a NEW thread just for that???
HUGS--be well & stay strong
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Morning ladies.....
So many of your thoughts have brought to mind feelings and thoughts I have had... or am having right now..I find this soooo very helpful.I hope it is doing the same for others.
.I too am not the most religious person, I know I question too much, I guess it's just the nature of the beast...I go to church AS regularly as I can, but I am very spiritual.. I've had some hard times since my mohers death, you see we had a"pact'...There wasn't anyone , anyone in this world that I am closer to than her, and we agreed that if there was an after-life that she would come back and give me a sign..No matter what..Well, at first I watched everywhere, into every person eyes I could..at every rainbow or dove in my yard..Then I started to think there is NO after-life because she would have been here I just know it...Those are usually my break downs in the shower, you know.. the good ugly cry...Now I think I'm at the "Who am I to put a timeline to it" stage...I don't know how long it is in her time now...I expected it immediately..I've also looked at it a little different, maybe she is here, maybe she is taking care of me and my family and I just haven't seen it that way.Just because I haven't seen the sign doesn't mean she isn't here...Did she leave quickly to go an "FIX" me, with my mets, maybe she went direct to the source..who really knows.????? I have to believe that she will be there for me at the time I idie.....that's just the way I work...
My mother fought long and hard , but at the end when she was told it had gone to the bone marrow, and she would only have 3-6 months, she came home and I believe "decided" enough was enough, and was gone very quickly in a weeks time.. All of her doctors couldn't believe it when I called them, they are still stratching their heads... I can tell you she did give me a sign when she was leaving.. but not since--- that I have recognized...
Definately keeping it real..Hope this isn't too much for anyone..Hugs Ladies...KLynn
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Hi
Just stumbled into this thread, and thought as the others have its agreat idea.
My mets are to my liver dx in 05, well I pretty much havent been stable in that time, tx to tx with weeks between them, I am not at the beginning of my journey and Im pretty thankful for each tx that slightly shrinks or keeps my lesions stable, I keep all these feelings inside, there are people in my life who dont know my situation, and to be honest the ones who know a little have never asked how things are progressing. I gave up work about 2 years ago, couldnt risk it, as I worked with special needs children, the risk of infections and the demand physically became too great.
My DH is here because I dont want to leave my kids to organise hospice, funerals etc, and they will need his support. I havent had the support from him for maybe 6 months or more now, he said HE finds it hard to cope with - is he the one feeling shitty from the chemo, fearing every twinge, ache, and pain NO that will be me.
This shitty disease effects every part of our lives, if I didnt have cancer I would of kicked him to the kerb and trod on him while he was there, but no I sucked it up and Im getting on with it the best I can.
Ive written about my wants for my funeral, I wont die at home, not because I dont want to but because DH couldnt cope and I couldnt burdon the kids. Ive started memory boxes for the kids, special letters, jewellry etc
Im on a chemo break at the moment, so its like waiting for godo, I know its coming but when?
Thanks for being here
Hugs
Sue xx
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Its funny that i've always imagined dieing in my sleep. That if I died.. I'd never know it because we don't actually know we are asleep so how can we know we died during that time. When i've had surgery,, it was lights out. And then suddenly awake and throwing up in a bed pan with noises around me etc.
Maybe i find it harder to accept dieing because thats how i've always looked at it. Like sedation for surgery. If i had never woken up after surgery,, i' wouln't know it. Nor would i miss anyone etc. so I guess theres some comfort in that at least. I try to beleive that I will see out of these eyes again some day. That my spirit will be re born and i'll again be alive and feel things and know things, but who the heck knows. My oldest son studied both physics and phycology in university,, then he studied some Bhudist beleifs.. so he has a total different take on it all. He beleives there is something and we'd be foolish to think that this is all there is. I take comfort in talks with him. He makes light of the whole thing... so i hope he can accept it and comfort the other boys when the time comes. Their Dad is bi polar and not taking his meds and drinks so he's going to be the only one they have. That scares me. He was abusive to them and me for 17 years. My new husband is only close with my oldest son as the other two have chosen not so acceptable life styles,, drinking,, not finishing school etc....so he's not going to be of any help to them either. I plan to leave them a cd where i can talk to them and they can see my face when ever they want. I'll say things like here I am again... you must need to talk, i'm here for you and i miss you too. etc. I think its better than a letter.
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Lynn, I love your idea of doing a cd, and think I'll do the same-they always joke with me that I like to have the last word, so in this way I really will!
I've recently started a journal-seperate ones for each of the kids, and one for hubby. They don't know about it, and I only want them to have it when I'm gone. I hope that it'll comfort them in the immediate aftermath. Given that I've started it at a stage when I still feel "well", it's as much a momento of happy times together. I want them to remember that if the last stage is horrific- as well it might be-that there were also many good times on this journey.
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I have never done a journal of any type. What do you put in it?
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Anything and everything that is important between you and the person(s) you are making the journal for. It is a box or book that when they miss you they can read, touch, see pix, whatever to feel better, to feel closer to you.
If you need help starting, there are scapbooking ideas on the net. I think there are even places that tell you how to put a video recording together.
And then there are the people here who can share what they do. Mine is a book of poems and short writing pieces. I scapbook each one to look nice. I dont have many photos.
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At the moment I'm mainly concentrating on recording what stage of our lives we're at, what we're doing, and interspersing photos. The kids are 23+25, the youngest (our sone), bought his first flat last year, and our daughter is also on the house hunting trail! So the initial entries have been taken up with reminscing about these important events, and how proud I am of them. There are reflections too, obviously on how I'm feeling-both good and bad. But my over-riding aim is to make it a document which will remind them of all the good times,amidst all the crap. As things progress the emphasis will change, but I really hope that this will help in some small way. I know how much I treasure the last few letters I received from my Mum, prior to her death (of BC), and hope this achieves the same-or more...I'm also looking out to buy a small heart (perhaps glass?), that I can attatch-so they'll always have my heart, and my thoughts.
I'm not a jewellery type of person, so have very little along that line to pass onto them, so hoping that something personalised to each of them will give them comfort. It's giving me comfort from doing it, so we all win. Initially I planned to hand write every entry, but my writing is so appalling that I decided it would be fairer to type it!
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The jewellry I put in the kids boxes are when my son was born I was bought a locket which I put his baby photo and a small lock of his hair, its chewed and bashed the chain is broken all done by him as a tot!! Hes just turned 18.
My daughter has the jewellry I received off my mum and dad for my 18th a ring and a bracelet, plus her baby bangles. She is 15 almost 16.
Im now considering buying 18th and 21st presents personalised things to put in their boxes, its so hard though, I was in a place where I actually enjoyed sitting going through old cards, photos paperwork etc and putting the boxes together, but sometimes I sit with the boxes and sob uncontrolably and have to put them away again.
I feel so guilty that they will face the rest of their lives without their mum. I keep wishing for more time, when I was first dx I wished and wished for 7 years, to see them get to 18 and 16 - now that it is 7 years, Im wishing for more, to see them get to 18 and 21 and my 40th ( all in the same year!!)
The CD is a good idea, I also grab every photo opportunity, I hate photos and there are very few of me, but over the last year I make a point at family meals etc to have as many pictures taken as possible!!!
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What I have done for a Journal, is just a plan book with 'letters' to my sons. I have covered a lot of topics. It is hard to write in both all of the time. But I try to do a letter a week.
Not to mention I am scrapbooking my heart out. The only thing is that I am not in a lot of pictures! bummer.
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As far as the spiritual side of what happens at the end-stage, I will go with a child's view that I heard over 20yrs ago. When my daughter was in treatment and it looked like she might not survive, I went to the library and got a book written by Elizabeth Kubler-Ross. I wanted to find out how to cope with what may happen for myself and for my family.
During her research, EKR, interviewed children who were terminally ill and when asked what he thought death would be like, one boy said that he imagined that it was like sailing away on a big ship. He would be on the ship and leave his family behind but one day they would come on board the ship and they would all be together again.
Another child said that she saw herself and others going through tx as chrysalises waiting to be born again after death, as butterflies. I thought that only a child could have such a simple explanation because they aren't yet full of the human doubts and fears taught to us by growing up. Peter Pan syndrome, I know, but I think there is more hope in those views than fear.
Sheila.
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I have been away for a week - my brother had a heart attack and died. I am the youngest of four, and since my dx with mets 15 months ago, I thought I would be the first to die even though I'm youngest. This brother, when I was very upset on finding out that I would die of this cancer, all he had to say was. "everybody dies." Well, duh, but I'm not ready! I had a hard time with what I thought was his insensitivity.
Here's what I think about dying the way we are, knowing for a long time that it's coming. I think it's not fair that WE have to mourn for our own lives. We have to go through the five stages of grief, and do all that emotional adjustment, as though we have lost a very close loved one. We HAVE, and it's ourselves. I only hope that my family, expecially my husband, will also have done the "grief work" in advance and can get on with their lives without too much pain.
At the end of last year, I filled out the medical directives, and wrote some notes, and sent all the paperwork as email attachments to all four sons. I've also donated my body to Cleveland Clinic for research, and I've sent the information on who to call for "pickup" to everyone. I am appalled at the funeral industry and how they prey on the bereaved, and so I've made it clear that I don't want a funeral home involved. Cleveland Clinic will pick up my body and use it, then cremate the remains and deliver them back, all at no cost. And then, I want a party! I've been making a folder on ITunes with music I want played, and a folder with photos for a slide show. I've also got a notebook on my computer with to do lists - things that have to be taken care of like changing the title of my car, closing my IRA, closing my website, coming on here to announce that I have died, all sorts of things, when I think of them I jot them down. I've also got a list of web accounts, passwords, instructions on how to pay the bills online. A list of outside seasonal chores, what plants need to be dug up for winter. And recipes for DH's favorite foods.
Another thing I've been systematically doing for the past year is throwing stuff away - cleaning the basement, getting rid of clothes, books, just paring down the excess of stuff. I'm horrified at the thought of leaving a mess behind.
In the meantime, I feel good and I want the bathroom remodeled, and a water garden finished (I dug the pond last fall, and now we need to put in the pump and finish landscaping). I know that I might head south suddenly, but on the other hand, I want to keep things moving ahead in case I have longer than I expect. That would be the worst, wouldn't it, to say a couple of years from now, "If I had known I would live this long, I would have ..."
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Analemma,, my brother said the exact same thing to me. We all are going to die eventually. Sorry for your loss. You sound exactly like myself. Leaving instructions for my husband,, doing this and that to make it easier for everyone afterward. Aren't we the angels for thinking of everyone else in our own season of discontent. Your right though. I find a fine line between sitting here worrying about new aches and pains and waiting to die,,, and the getting on with life because i may not go right away. Its the unknown time limit that seems to be the issue with me. On one hand i'd like the docs to give me a rough approximation... yet on the other hand i don't want to know. I can't win.
Today i go to visit my family doc who has been calling to see if I need anything. I figure I might as well keep him happy too. The secretary suggested a home visit so i had to explain that i could still drive etc... and it was the chemo that was making me ill for about a week. They are sweet to be concerned and it made me tear up when i hung up because i assumed the medical team had abandoned me... This family doc has been a saint since my dx and surgery when i begged him to take me on as a patient. Someone said they think his wife died of bc ,, so maybe he's feeling a dedication to helping,, who knows. One thing i'll ask about is anti depressants. I don't want the side effects of starting out on them but i need something to get me out of this slump i'm in.
Also i want to ask about the oxycodene i take. They say its like heroin and addictive which i already am when i wake up in the morning. Nervous,,, skin crawls etc,,till i take one. I want to know if theres anything else i can take or is this it. Well thats my day in nut shell. Thanks for listening , Be real. and huggs to you all
Lynn
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Analemma - I am sorry to hear of your loss. He may have had said things starkly.... but at least he was communicating. You have an example in front of you to compare what you want and what he wanted. You may find similarities that bring you closer to him.
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Analemma, so sorry to hear about your brother.
You are right, it is the knowing that our days are numbered. We are faced with the grief our lives are shorter than we expected. At 44, knowing that my life is going to be cut short is hard to comprehend with out sadness.
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Janis, I'm 54 and I had my kids early, so my youngest is 25. Your situation, of having young children that you won't be around for, is truly the tragedy of breast cancer. But even at 54, knowing I won't grow old with my husband (I'm not old yet!) or see my grandchildren grow up makes me feel like a kid that has to quit playing outdoors to go to bed when it's still summer daylight.
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Lynn,
Most certainly ask about anti depressants and pain meds. The anti depressants just help take the edge off so the scary stuff isn't quite so overwhelming and managable. And there are so many pain meds you should not be having these problems in the morning. Try something else. This is called pallative care- managing the symptoms and side effects so that you are feeling good. Make these doctors earn their money! We (any one) should not just accept what is given the first time out, speak out, speak up. You want to feel good, if not great, but they have to know first.
Analemma- so sorry to hear about your brother. My prayers and thoughts are with you.
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Ladies...I have to thank you from the bottom of my heart, I received three different pm's from ladies here about my last post about my mother, and the friendship here, and the caring way people respond is so heartwarming...There is something very special about having your most inner feelings confirmed, from other peoples experiences ..The unknown is just that unknown but the different views are amazing..and very comforting...Thank you again..This is why these boards are so important to me..
Lynn I really like your idea about not even knowing that you are dying..Dying in your sleep, like you said, if you didn't wake from surgery , you wouldn't even know..Lights out..I find that very comforting too...xo
Thanks ladies you always step up and help others..Bravo..KLynn
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I had my family doc appt today from the doctor that wanted to visit me at home. I went in as i can still drive. Not that bad off. I thanked him for calling me at home and he began to tell me that he sits on the board for pallitive care in my local community and will come anytime i need or send another doctor if he's not able. His utmost concern is my QOL,, and perscribed me more Percocets,, like 300 or so. He told me not to worry about the morning jitters or getting addicted. The ones im on are the very basic 4 hour type and to take them every 3 hours if needed during chemo and not to try to withhold them out of fear. He has an 8 hour type,, but we agreed i have more control over the 4 hour ones so its those for now. It made me feel better that i'm not a drug addict yet.
He then perscribed Celebax to try as an anti depressant. Only 10 mg to start out but it should give me a lift in time. I go back in 3 weeks to see how its going. He sat with me for about an hour and the waiting room was packed.... but he's always been like this with me and i truely appreciate it. I feel cared for. After explaining my slump i broke down,,,in tears kinda feeling sorry for myself. I didn't want to,, but the fact he cared so much,, was what was bringing me to tears. I think i'm in good hands and in the end I'll know i can count on him to ease my pain and hopefully the passage into death won't be as scarey. I truely love this guy. Husband first,,,, family doctor second lol God i wish everyone here could have my doctor for just an hour or so.
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I dont have much family so I have very little experience of people passing away. So I start with Stage 4 Breast Cancer. Just dive right in the deep end of the pool. Thank goodness I am surrounded by a group of people who value my hide.....Thank you all for sharing. It made getting dressed
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You all amaze me! Hugs
Analemma & Klynn- condolences for your recent & not so recent losses.
Can I throw out a few ideas that are a different "take?" ........please don't take this as a thumbs-down on YOUR plans & feel free to respond as this is just IMHO.
Sue-I have said b4 that I would rather BE the patient than watch someone I love go thru this......I know that every marriage is different, but sometimes I think husbands seem to abandon us cuz it is just TOO much for them to wrap their brains around!~ To imagine everything my dh has gone thru walking this road with me for over 8 years!!! Yes, our relationship has changed enormously! I am not very happy with some of the changes, but mainly I am blessed with a man who I KNOW loves me unconditionally & I think his way of coping is denial.......without the ability to deny the reality of my dx he may be a complete A-hole as so many others become......you know your dh best--just one possible reason for a dh being a jerk.
Those writing journals & making cd's & such- When I mention having something for the kids on the big days I will miss my dh has told me he doesn't think it is necessarily a good thing-that it might be bad for them--he says, "gifts from the grave give me the willies!". He thinks it may be unfair for me to write something to my 16 yr old dd NOW for her wedding day not knowing WHERE she will be with my absence by then....I sorta have come to agree with him--yet my best friend said I could leave them with her (I would allow her to read them at the appropriate time b4 delivery) & she would give them to the kids if she didn't think there was any reason not to....I have an out! LOL
Sue--we have parallel lives--8 yrs since org dx, son 18 & dd 16!--but I am an OLD mom...55-we joke that we gave birth to our own grandchildren!!
BTW---after my femur break sx I stopped breathing--I remember thinking after that how easy death COULD be....
HUGS---be well & stay strong
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Hi saint
I love other peoples opinions especially if they differ from mine!! It helps to give clarity sometimes.
The journals, cd thing your totally right, I watched a movie not too long ago, a bride in the car on the way to her wedding and the uncle who was giving her away pulled a letter out of his pocket from her late dad to be given to her on her wedding day, well let me tell you I thought if that was me I would of been too upset to carry on with it, so I havent been spacific with things, but I am a hoarder, so have early birthday cards Ive sent them, school reports, letters etc, pictures they made when they were tiny, even congratulation cards from when each of them were born!!! I know I really am like a squirral!!!!! You know my mum left nothing for me, it was my dad who gave me her wedding ring, so I wanted them to have spacific things with explanations attached as to why they are special to me. And a box can be put away in a cupboard until they feel the time is right for them.
As for dying in my sleep - thats a big yes please from me, hopefully during a wonderful dream!
Had I waited to have my 2 kids they might never of happened, I was 30 on original dx and was thinking about one or two more, but was told from the off that it wasnt an option.
hugs to you all
Sue
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Well, the journals will be there for them. They may not want to read them or be ready for them when I am gone. But maybe several years down the road, they will have them to cherish.
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OK--this was a good thing to discuss! I guess my vision was more like that movie Sue described-a letter or gift for every occasion! I started journals for each of them when mets was first suspected. When I re-read them they made ME cry & I'm the one who wrote them!!! I was SO scared & forlorn....I put them away & haven't written in them for over 4 years, Maybe I should get rid of them so they won't eventually trip over them by accident!
I DO have lots of things saved--jewelry from mom & grandma, artwork they did in daycare & elementary school, cross stitched works, quilts & baby clothes I made....-so maybe I just need to organize them with some explanations thrown in----THANX sistas! Some times I'm sharp as a tennis ball! DUH
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I just remembered--I bought a journal for my mom---it was printed with questions/reflections for a gramma to write for her grand dd! Who was you first kiss--how did you meet your dh--what do you remember being sick with as a kid---what was your special talent-what subject were you good at-favorite movies. songs etc---that sorta thing. Unfortunately my mom didn't get to much of it......
I will have to look for something like that!
HUGS all
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I'm working on a "faces of Marsha" scrapbook for my mom. The adult me since she has all those child photos. Vacations with friends, pics of me in various roles i've played on stage, etc. I plan to give it to her on Mothers Day. I am also finding it very theraputic to go thru all those old photos and laugh/remember each story behind it.
If you haven't read the book "The Shack" I highly recommend it.
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I found this thread today after catching up with all the sparks flying on the Mets board. Wow, I love the honesty! It is really amazing to have a place where we don't have to be putting on our game face and cheering everyone up about OUR cancer. I see myself in so many of these posts. My fear of the dying process, my worry about who's going to be there for my adult kids when I'm gone, guilt about not feeling like having sex, looking at my bald reflection in the mirror, thoughts about the afterlife, pain and exhaustion, all are things I think about pretty much every day. I think of myself as a positve person and I do have a faith in God, but also I am sad and in pain and it is hard, really hard. I know you guys understand this and won't think I'll make my cancer worse by "being negative." Nice being part of this group and I am looking forward to a different kind of forum here.
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What about our DHs? I honestly admire those people who are ok with the fact that their DH will marry again after they are gone. I'm not there yet. Don't know if I'll ever be. Maybe it's my age (41). I am jealous of whoever it may be living the life with DH that WE had planned to live together. I know that's not right. I don't want DH to be sad, lonely, and grieving for the rest of his days. I just can't stand the thought of him loving someone else. Ouch...
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