A place to talk death and dying issues
Comments
-
Marie67: I too am considering discontinuing treatment. Past 2-3 years nothing is working or worked for maybe a couple of months and then stopped. I always, since first dx'd, known that this was a life sentence. Took my 5 minutes of feeling sorry for myself and then had a long talk with the "Big Guy" about how we could get through this minus a cure. This was back in 2007. How quickly time passes. Then 5 years later the final dx of MBC and started on all sorts of ER+ meds. With the recommendation now of the next pill, Xeloda I'm not so sure I want to go in that direction and considering calling it quit. It's not an easy decision, but I'm thinking it's one that I need to make. I have other medical conditions as well and with the two combined I think I would like to have a few months without side effects. And because there is no telling how much or how bad they could be I'm not sure I want to find out. I feel and believe this is not giving up, but accepting the inevitable and working towards embracing death instead of fearing it. More than dying my fear is what to expect during the last, hard days of pain so intense that medication isn't easing it enough to stay aware and pain free. I just don't have any experience with these meds, how they work. Don't know what to expect and that more than anything else scare me. I'm working on focusing on what comes after death as I accept and embrace this adventure. Surprisingly, it has done a great deal lifting my spirits which works for my day to day attitude. So all this being said I understand your feelings of guilt. Guilt is like worry in some ways. One only makes you angry and the other just makes you crazy, combined you stand still and can't grow in love or spirit.
0 -
Thank you Gail. You are right about the guilt. I guess I’ve been fighting anger ..I don’t want it to come out against my family. I’m definitely crazy too. All the things I was planning to do before death comes...well they aren’t getting done. The letters to my grandchildren. The family history I’ve been working in for years, Even the visit to preplan the funeral or whatever. It’s all fallen by the wayside because I can’t write anymore. Words and thoughts just jumble. I’m also focusing on what comes after death... I’ve lost my faith over the years. Lots of reasons. My church has failed us. I believe in Jesus and his message to love your neighbor and yourself. But the rest of it...it’s sad after years of believing in an afterlife to suddenly see only a void. I don’t mean to bring anyone down here. It’s just made this all so much more difficult. I hope it is an adventure.
I fear the last days of pain but I fear more saying goodbye to those I love, I’d also like to know what happens next...as a lifelong reader of history and fiction I know so much more will happen. I sure hope it’s a lot better in the future
I hope you can get more relief for your pain Gail. I hope you have good hospice people around you to help you get what you need. I appreciate your thoughts more than I can express0 -
To those reading whose faith is strong, I respect your views. I am not wanting to tread on anyone's religious beliefs. I'm only sharing my personal experence.
Marie, I've mentioned I no longer have a belief in born again Christianity. I understand how you feel a void. I do, too. What I've learned is there are many others who no longer believe and they feel as we do now.
I feel I'm growing beyond the old faith. It served a purpose in my life, but I've grown past it. The demands of needing more from my faith after a stage iv diagnosis was too much for it, and the illusion shattered. I could no longer believe as I once did. Once I saw it, I couldn't unsee it.
The odd thing is, what brought me to this place was reading books by women who had escaped the FDLS, the cult whose leader was Warren Jeffs. All these old men marrying 13 year old brides and impregnating them. One man told a fiesty teenage girl, “I'm going to marry you and breed the rebelliousness right out of you." And he did.
I began to see how Christianity was a watered down version of this male dominated cult. Christians are just supposed to believe, conform, don't question your faith, ect. It was what I was taught my whole life, but I'd always had some problems with it, and I finally started to understand why. It was scary to think I could decide my own thoughts on faith without having to be told, “this is what you believe" and “don't question (male) authority".
The more I follow this new path, the more people I see doing the same thing. I'm not quite sure what I believe, but I can't profess faith to a white male god in the sky anymore. The feminine and earthy aspects of divinity have been purposely suppressed and destroyed. The book Dance of the Dissonant Daughter by Sue Monk Kidd is a good read that might give you some comfort.
A side note, I was raised Catholic and what's happening there with the priest pedophilia cover up being revealed is so egregious to me. It is another reason I no longer believe, because there are some cult like aspects there, too.
0 -
I'm with you on this one, Divine, as usual. I was raised Lutheran and "dropped out" at 13 or so. I never felt the need for it again. I don't feel sad or missing anything. It's hard to say you feel this way with all the very religious people around these days, including most of my friends and relatives and so many people on BCO. I do believe in something but could not explain what it is, even to myself.
0 -
Jaycee, it's so interesting you were that young when you decided yourself what you did and didn't believe.I got a lot out of my time believing in Christianity. It truly saved my life. I didn't give it up because I got mad at God for getting mbc. It was more a matter of, okay, I have this, but no amount of prayer or reading of scripture is helping me find any comfort or direction. I arrived at this conclusion about five years after being diagnosed, it wasn't a rash decision. Every time I turned to God, I got more depressed because I felt nothing. I wanted more. I finally allowed myself to believe I was worth more and I had the right to feel that way. To get it, I had to swim in unchartered waters, leave the safety of the shore. A certain percentage of people won't leave that safety, it's too unsecure for them, even if they are questioning their faith.
0 -
Divine: I understand your feelings about the church. I have a child molested by one of those evil men. This child developed bi-polar disorder as a result. We were a very devout family and this really tore us up. The church failed me not only by this, but in other ways as well and about 40 years ago I left because of my anger, guilt ( I should have known), disgust, and started searching for other things to fill the spiritual void. I studied many religions and, as you, discovered it was a male driven belief. I know God is neither male or female, God just is. At least, this is where my studies, prayers, meditations have lead me. Being raised in a devout Italian family I don't have to tell you how difficult it was to break away. The indoctrination was complete with me, to the point in childhood I wanted to become a nun. Ouch! Once I allowed myself to believe in myself and respect my own enlightenment on these subjects I began to heal. Trusting in my own walk I think saved my relationship with this higher power, ( no not an AA person, but the description fits better than anything else because it does not define gender. To each of us, what I am trying to say is we can have all the kindness and understanding for others we can provide, and here comes the big BUT, none of that is satisfying if we don't take care of ourselves first. All of us have felt the anger, guilt, disgust, shame, remorse, resentment, on and on throughout our lives. Were human for heaven sakes. But we must first and foremost stop dwelling on those feelings. They keep us down and depressed and I believe you cannot connect with spirit strong enough if you don't find a way to work through these feelings and lay them to rest. Sometimes we think all we have is our anger and resentments, but I promise you we have so much more than that and are capable individually of great understanding and acceptance of ourselves. But you have to throw away the old outdated mores and values that just don't work or only keep you stuck. That saying, "open up to the possibilities" has more meanings than we can count.
Marie: I began making arrangements several years ago, but getting to the point where I sit down and list what goes to which child, I am procrastinating too. God this is hard. Saying those final words, sharing those final thoughts, letting family and friends know exactly what they have meant to you and still do. Seeing the anguish in their eyes, trying so hard to be strong and falling apart is a lot to take in and yet we try to keep a smile going. Outlining what I want in the service and not knowing what or how I really want it. My family is scattered so we engage in a lot of phone calls. They are supportive of my wishes and wants, but it's hard and you know it because we have all been there with our parents or will be. Sometimes I think "nothingness" after life would be better. An absence of all this emotion and relief, relenting. And every time I go there my brain rejects it so fast I can't stay connected to the thought. It just feels wrong and wasteful. I appreciate so much everyones thoughts, searches, feelings. Hearing about where you are and how you got there is so encouraging to me. These thoughts are so connecting on such a different level than I have ever connected with people. You all enrich my life and i thank you for being here.
0 -
Gail, thanks for sharing your spirituality experience. I'm so sorry to learn your child was victimized by an evil man representing the church. You've had it rough with that and dealing with a very religious Italian family. It can't be easy.
I was raised Catholic. Not only has rampant pedophilia come to light in recent years, but also financial abuses in the millions of dollars. My heart aches for my late parents. Prohibited from using birth control, their money struggles raising many children contributed to our fractured family. Yet the church housed priests in million dollar homes. So much for personal sacrifice. It was our neighbors of other faiths who were our salvation, not the church.
In my 30s, I experienced deep guilt over fertility issues, thinking because I used birth control and had sex before marriage, God was punishing me. How I wish I could go back and talk to my 30 year old self and put her mind at ease. But such is the shame religion can play in one's life.
I acknowledge my complicated feelings but don't dwell on them. We cannot change the past. I am sometimes in awe that I saw the truth before it was too late, especially living with metastatic breast cancer. Sometimes my new found freedom makes me feel like, wow, I can't believe I made it out of there!
0 -
Divine: I can certainly relate. It was hard even after the abuse was discovered to pull away. Raised in a faithful loving family who thought they were doing the right thing made it so hard to turn my back on the dogma, guilt. My dad was my idol and the patriarch of our family once my grandfather died. Once my dad died everyone went their separate way and that made it easier for me to establish my quest without guilt. Funny how one member of the family can have such a hold over you, but he set the mores, values, conditions for our faith and he was such a loving father I only wanted his approval, as with most children regarding their parents. I was 37 when I made the complete break, went back to school, divorced and moved with one of the kids to another state. I even tried to go to Mass on several occasions, but it was too emotional for me. I think I felt the very fabric had been torn away when my child suffered so. It took many years to pick up the pieces and begin the long road to self discovery and still I quest for more. It almost seems, as you mentioned, that MBC maybe taking a toll on my body, but my mind and spirit have grown and become more than what it was. The letting go of the hold this life has had on me, fighting to be here for my children and extended family, thinking it was my job to continually be here for them. I am embarrassed to say I realize I wasn't giving them the respect from me to accept my finality and know they can do it on their own. Now that's hubris, self importance, and pride rolled up into one big mess. And I am guilty. Now that I realize that I can let it drain away and get on with my 'rat killing.' I found out yesterday that the cancer has spread through my chest wall and the reason I'm having such a time with asthma and achy feelings through my back. Hearing that my immediate thought was, ok so it looks to me like we may be in the last months and I had no reaction, only acceptance. I'm still managing to take care of myself and my apartment which gives me a great deal of pleasure, reading, some TV and my computer. I feel content most of the time, but I do feel anxious and panicky at times and I think that's normal for the situation. Would like to hear what all of you are feeling and dealing with a like situation.
0 -
Gail, thank you for sharing more of what your life has been like unentangling yourself from the religion your were “raised on" and moving forward with your own personal quest. I always find personal stories like yours so interesting.
I'm sorry to hear the cancer has spread through the chest wall causing physical difficulties. Do you plan to have palliative assistance? It may be the time to seek help along this line. I believe they are there to help with both the physical and emotional aspects of this phase of mbc. My heart goes out to you.
0 -
More Americans are dying at home rather than in hospitals
By Marilynn Marchione
December 12, 2019
For the first time since the early 1900s, more Americans are dying at home rather than in hospitals, a trend that reflects more hospice care and progress toward the kind of end that most people say they want.
Deaths in nursing homes also have declined, according to Wednesday's report in the New England Journal of Medicine.
"It's a good thing. Death has become overly medicalized over the last century" and this shows a turn away from that, said the lead author, Dr. Haider Warraich of the Veterans Affairs Boston Healthcare System.
......Read the whole article here:
https://apnews.com/93d7f8a626f8046b0194d35bffdcadf2
0 -
Devine: I will be using hospice. I think the oncology center will transfer me over to that when the time comes. I live in a small town, but we have oncology here and so many other services I can tap into. I plan to stay at home for as long as I can, when that is no longer possible they will transfer me into an in-care hospice. A wing of one of the nursing homes here is set up for that. A friend of mine died last year and was there for her last days. It was amazing because family and friends could come by to see her and have closure with her. It was really amazing. Thanks for the information and the kind thoughts Divine. Tonight will be short. Because it's been a long day and I have some work to do. I still collaborate with other therapists and tonight will get my professional juices going. Probably won't sleep until I have processed information and passed on my thought. It's a good exercise for keeping me mentally sharp and I like that, but when done in the evening it keeps me awake too.
0 -
whenever I hear of a death with no suffering, I immediately think it’s a good one. I know the good ones are often quick which means the family can be thrown into crisis- but, still - it’s the person who dies that I am thinking of. I have felt judgement from those left behind for my feelings of relief for the not suffering.
On another topic- at the memorial I attended yesterday - another reminder not to tell people I am stage 4- I was at a table chatting with people ( who all had had breast cancer) and a woman came by to chat and then said “ I have to get so and so home- then in a whisper she said - “you know, she’s stage 4” I looked healthier than most of the non stage 4s there. And the woman who died was never stage 4.
Wishing you all ( and myself) serenity wherever you can find it.
0 -
another friend of mine died yesterday. Heart broken. Also a very fast passing. Barely on hospice
0 -
I think when families cannot rejoice in the quick passing of someone who has lived with cancer for years on end are too selfish to appreciate anything related to a quick passing. How I worry about the end of my life and fear the suffering associated with the pain of this terrible disease taking my life inch by inch, moment by moment until I finally succume. My goodness, anyone who wants me around another day knowing I am beyond healing is too self involved. I welcome death quickly, in my sleep or coma unaware of what my body is doing. anything else is unacceptable, but God determines this, not me. I can only pray it's quick.
0 -
I found this memoir-ish article by an oncologist, about a stage 4 cancer patient insightful and thought I would share the link:
I'm Going to Be So Sad When Nancy Hammond Dies
0 -
Lumpie: Thank you so much for this. It is so helpful hearing about other's stories and their fight with cancer and to hear how different it is for everyone. Knowing the sameness of the disease and the difference in the individuals fighting this evil disease. I hear so much strength, positive attitude, caring and ultimate hope in the after life that the hope it give me touches my heart. I hope there is a 'room' where cancer patients meet immediately after death to celebrate their arrival and rejoice in their victory!!
0 -
I think I'm wanting to get a better understanding on Overall Survival and Progression Free Survival when it comes to Stage 4. I know treatment options are available and you just sorta move on down the line as it were when things fail. But I want to know statistically what is really going to extend my life AND give me quality life and what is only really going to be useful a short time before needing to move on. My goal is what will extend my life AND give me somewhat "normalcy" at the same time without having to swap over and over again. If it extends my life but I feel like crap or it really won't do a heck of alot I really don't see the point. I know ladies are very knowledgeable on this thread and I feel I really want to know. I am asking because I haven't been able to peg anyone down on my team to explain this to me. I keep being told there are options. I understand that. But I want to be strategic with my options. I don't want to do treatment just to do it, you know what I mean? I know when my sternum biopsy can back hormone receptor positive it was mentioned this opened up more options than I would of had had it can back negative since I burned through alot of options in my previous aggressive treatment. I guess I'm looking for blunt answers so I can make some decisions, I'm about to start 3rd cycle Ibrance, my pain level keeps going up, Its consistently at a 6/7 right now, up from around a 3/4 in May when I was diagnosed. Ibrance is tolerable but I fear it isn't doing anything for me. I see my MO today, I may express some of this to her. Maybe I'm just already sick of the whole poking/prodding thing. "Last name, date of birth". Ugh.
I also want to add that I've been feeling alot of pressure to "get well" and for some results to be seen. The fact I feel worse right now has people stressing out around me. I just feel prodding to try everything available to me despite how i feel or what my thoughts are on the matter. I love my family I really do, I just hate feeling all this weight on my shoulders to give them good news and tell them I'm feeling alright. Everyone wants me to say I'm feeling alright. Everyone wants to know things are going well. "How are you?" "When does treatment stop for you?" "I knew someone who had breast cancer and lived another 30 years!" "I hear the steriods are the worst part about chemo." "What do you think you did wrong to make it spread?". I feel pressure to be positive all the time. Pressure to smile. I just hate it. I try, I really try to keep myself in check and not be a constant debbie downer. I do well alot of the time. But sometimes I have things I need to get out. I let all my deepest thoughts out on here or in my blog. I don't really talk about these things I'm thinking with anyone because its like nobody can handle honesty. I'm contemplating and wrestling with big things and its like I need to lie about it.
0 -
Rabbit~I can hear the frustration in your words. Ibrance is a great drug. It does take at least three months or longer to see its effectiveness. They monitor blood for your counts. I am starting #40 month. I can speak to it’s effectiveness! I’ve been nead for 3 years. Tell your team of your pain. Do you have a palliative care doc? They worked through my pain and got me to a tolerable place. My spine still gives me pain, but it’s manageable. Just wanted you to know. Ibrance can work. From someone who knows. The fatigue I battle with adderall. Works well. Thinking of you. ~M~
0 -
Rabbit, unfortunately, it is difficult to know what treatments will help one of us. I have seen countless accounts of people who have relatively long-term, remarkable responses to medications that fail others very quickly. Although it seems 2 people have similar disease, there are factors yet to be discovered that can affect response. I do agree that you should report your increased pain to your MO if you have not already done so. What are you taking with Ibrance? I see Aromasin listed in your profile. I was recently on Aromasin for a couple of months. The pain, particularly bone pain, became so intense that I was switched to another AI. Some people have no problem with the drug. As I said earlier, people react differently to treatments. I have even read that some people have an easier time with one brand of a medication than another brand. It is usually due to additives. I don’t have answers to your main questions, but I am sure someone else will drop in with information.
Hugs and prayers from, Lynne
0 -
Rabbit, everyone’s cancer is different. Some live for years and years with stage IV on a single treatment and others live only a few years even if they were on the same meds. I started on Ibrance/letrozole and it lasted for 7 months. My cancer changed from ER+ to triple negative. There’s so much unknown in treating cancer and the doctors can’t tell you how long it will work or what side effects you will get, and what makes you feel like crap may not affect someone else. The more educated you become on cancer and treatments the better you will understand what those choices you have really mean to your particular situation. I feel like the more I learn the more I realize is unknown. They are finding new things all the time. The Ibrance was the easiest treatment I’ve had and wish you many cycles on it!
0 -
Quick comment w/ a different perspective- if this site it were diluted with comments from people who do not have metastatic cancer but want to offer sympathy or ask basic questions, I would not even try to wade through these threads. Too many irrelevant posts. To me, the greatest value is learning the experiences and insights of other stage IV patients, and instead I'd rather encourage more lurkers who are stage IV to jump in and join the conversations...from my perspective, a big part of why this site works is because it IS restricted to stage IV members and that the moderators work to keep it that way.
0 -
Who's comments have been diluting or irrelevant? Curious to know.
Thank you for the above replies. Maybe this is pessimism rearing its head, maybe I'm bitching or venting, but more than likely its just plain fear. Maybe the uncertainty of everything is at the root of all that I am feeling. It's the hardest to live with honestly. I really despise we have to wait and see if something works, I find it torturous. I feel like a pickle being thrown at a window. "Well, lets see how long she stays up there before we throw a few underneath and see if that slows her from sliding down".
8 months into a Stage 4 diagnosis and I haven't found my footing yet...
My MO and i spoke this afternoon. We are going to try MM to see if that helps with pain in the spine. Says might help with my sleeping problem too and mood. So am seeing about getting a certificate. Willing to try it. Even just once. Cycle 3 of Ibrance started tonight.
0 -
Rabbit, I agree with the advice above about treatments. None of us know what will work for us, nor what side-effects each person will have. I've sailed through treatments others were struggling with (Halaven, Xeloda), and struggled through treatments others thought were easy (A/A, Piqray). As the group in Monty Python says, "we are all individuals!!"
The pressure you are feeling to be 'well' is a different matter. There are ladies here who explain it better than I can, but some of that is probably external and some of it internal. We're women -- we always say everything is OK. I don't know how to suggest that you can stop. It's instinctive. I find myself doing it sometimes.
One suggestion which has helped me: Can you think of a mind set where you are not to blame for results? You don't have any control over them. They are what they are. It's the attitude that "a treatment failed me" rather than "I failed a treatment". Scans show what is already there -- not what you made them.
For the external folks I usually say "I feel fine today" or "I feel crappy today but tomorrow is another day". I try not to address the long-term situation. My husband, mother and co-workers worry, but that's on them, not on me. [easy to write, really hard to do]
0 -
rabbit—this dx is so freaking hard. There is nothing easy about it. I see that you were dx at age 37. I was 34 (7 1/2 years ago). Being young with this dx comes with its own difficulties...I was newly married and just had a baby, just bought a house, and had just really got settled into my career (just gotten my masters)...everything I had worked for to shape a better life for me and my family...gone...took me about 3 years to wrap my head around my dx (slow learner 😂 and thank god I lived long enough to move forward!)...
I remember reading everything in sight to try to figure out the BEST outcome for me...guess what? I didn't find the answer because there is no answer...not to beat a dead horse (because I do love horses) we are all individuals and even though it seems logical that hey we have the same type of cancer (ER +/ Her 2 + or whatever the case may be)...no two cancers are the same nor do they respond the same to medication. Damn, right?
Do your research. Talk to your dr's. Come up with a plan and take it one day at a time. Don't let the unknown steal your joy. Scream, cry, have bad days...and then smile, laugh, and have fun when you can.
I agree that women tend to want to make others feel better. Put on a brave face and blah blah blah. It's ok to not be ok and let others see that side of you. It's real. You are only human. It's not your job to make other people understand or feel better. They need to grow up. Don't waste your precious time and energy on that crap. I hate to say it, but very few people in your life will truly understand...I remember going to lunch with 3 friends from high school. One of them I was close to, the other two not so much. I felt like I was living on a different planet from them. Their lives were so normal and mine was so not! I went through an angry stage...I went through a sad stage...I eventually figured things out (well I just now live in the denial stage! It works really well!)...
Sorry for the long post. Just know we are here for you to lean on and vent to.
Hugs
0 -
Kjones, it’s true, so few people understand what we are going through. I saw so many relatives over the Christmas holiday who asked flippant questions about my treatment and it showed me how clueless they were, even after all these years I’ve been dealing with mbc. One sister always asks how I’m adjusting to the new meds. Well, I’m not adjusting to them. I still have the rough side effects that are not going away. But she wants me to say, “oh, everything is great now, no issues!” and be all perky about it. Because she’s the one who wants to feel better about it! But I try not to spend energy making others feel good about what I am going through.
After the new year, I had a conversation with dh, who immediately got where I was coming from. That really emphasized how clueless everyone else is about mbc. So I’ve sort of vowed to steer clear of too many family gatherings which tend to be superficial and causes me stress.0 -
Kjones~your post hit home. You are so right when you say very few will understand what we go through. Sooooo true. I know my kids are still convinced I’m just fine! It’s scary because sometimes it makes this disease even lonelier. But well said, I experienced some of that over the holidays. I’m sick of playing down how I feel. For others .. ty for sharing.
0 -
Pajim, You hit on something, the pressure I'm feeling isn't just external pressure, but the internal pressure I'm putting on myself to "get well". I absolutely am pressuring myself, mostly to exude the youngness I'm supposed to. Its awful to be young, and look young and feel nothing like how i look. What you say is absolutely true, we as women will always say everything is okay. I don't see myself stopping saying that either. But in the spirit of honesty, I do find myself being more direct in my quandry to save time and headache. Saying Metastatic Cancer doesn't register with most people, i find saying I have terminal cancer gets the point across better, but then sometimes that opens up the whole, "Well how come your not in hospice?" to which I say I have an appt there at some point, but not yet. You suggestion of where to place blame aka treatments is what i need to hear in terms of releasing the pressure cooker within myself, to look at treatments failing me rather than me failing them is very very helpful. I now understand when ladies progress they say such and such treatment failed me. Thank you so much for this, I think this way of looking at things will help presently and in the future.
KJones, your sentences "It's not your job to make other people understand or feel better" and "I hate to say it, but very few people in your life will truly understand." really resonated with me. I think I've been struggling with people just not getting it around me. They just look at me like I've got lobsters crawling out of my ears half the time when I try to explain. Its a difficult place to be, walking shoes not many people understand what its like to be in. I've shared previously I talk in this thread because uniquely I am declining further IV chemo when that time comes, when targeted therapy or hormone therapy fails for me, I will stop treatment as a personal choice, and i understand what that choice means and accept it. I loathe the decisions we have to make and wrestle with. So often I think alot of our battle isn't just with our bodies, which in of itself is an intense thing, but with the mind which can make every step forward in this odyessy incredibly hard. I go between extreme highs and extreme lows and struggle so hard to try to really appreciate the highs when they come, because when my engine starts sputtering, I feel like I'm practically janking and jerking the control wheel to prevent me from entering a free fall into a pit of despair. I'm just hoping to have more time work through things. I'm out of the crying every day stage now, and the need to pop an ativan all the time stage, i think i'm in that stage now emotionally where I'm saying to myself.."Ok, this is my life now, how am I going to handle this going forward". I feel this disease at this level makes you "grow" so much you don't get much time to adjust, your just kinda thrown into it. As I saw one metastatic sister put it, living your life playing frogger in a highway full of buses isn't easy. Thank you so much for posting.
Divine, " But she wants me to say, "oh, everything is great now, no issues!" and be all perky about it. Because she's the one who wants to feel better about it!" - totally get that statement. I am pulling for you with your treatment, I always enjoy your posts when I run into them.
Micmel, I so get what you said about this being a lonely disease and having to play down how we truly feel. You ladies here all get it. You understand. But when I'm outside these boards there is a whole entire world out there that doesn't get it and while I know there are many who feel what I do everyday. There's still so many who don't...or rather, who don't want to understand. I seriously feel like a leper around some people, like I'm contagious. "Oh, there goes that young one with stage 4 cancer, isn't it so sad". I think to myself..you have no idea. Happy to see you pop over here, I lurk sometimes on your thread to see how you, philly, candy and mae are doing. I have peeps I keep tabs on
I am so thankful you ladies are here, that you get it, and let me work things out from time to time in this thread.
0 -
we seem to be a culture of victim blamers. We heap shame on people who get diseases that they had no blame in. People shrink away from us if it will save them from the disease. we are not good at sitting with people who have something terrible. I was told it was karma- by someone who has some serious karma to pay back.
My breast surgeon tried to tell me back in 2012 that if I don't smoke or ride a motorcycle- it's just not my fault.
I don't know where the victim blaming came from, but, it is rampant here. we as a society need to unlearn it. it's not your fault
hugs
0 -
My favorite way to stop the victim blaming in its track is to use sobering statistics that people seem to always be unaware of. My favorite one is this: Are you aware that one in two Americans will be diagnosed with some form of cancer in their lifetime, unless, I add, they die from heart disease first. The other 50%, by the way, might have an undiagnosed cancer that they might never know about until they die of something else.
Another favorite of mine is to ask: When was the last time you had a pet scan??...the answer is usually: never! So, then I ask: so how do you know you don't have cancer already? You know... even at stage four, cancer can be totally asymptomatic....mine was!
That gets their attention rather quickly and shuts them up pronto! I love to educate people.
0 -
Oh my gosh, I was laughing out loud reading your second response, Frisky! That is a good one.
For those who prefer to go fast, I totally agree. I had a friend who died of BC 6 months after she ran a half marathon. I was stunned. How could she be so healthy and strong that she could run a half marathon on treatment and then be gone? Similar to me, she was diagnosed in her 30's. When I was diagnosed with mets, I recall thinking that I don't want the same thing to happen to me - fine one day, gone the next. However, after thinking about it more, I realized that is exactly how I want to go out. I have no desire for a slow, painful decline. Awful for me and my family. Would rather just keel over one day if that is what is in the cards for me.
I was watching a show where two widows spoke about a sense of relief when their spouses finally died of cancer- not relief for the pain and suffering to stop for their spouse but just a sense of relief for them because they lived in such a state of stress for years as a caretaker and spouse that they didn't have any sadness at that point. They loved and missed their spouses dearly but still felt personal relief and an inability to feel any sadness. I totally get it and would probably feel the same but that has always stuck with me and makes me feel sad that my DH will likely feel relieved if/when I pass. I also think of friends who, for example, went through a divorce but had no grief over it because they spent years prior to that grieving the true loss of their relationship with their spouse. Along those lines, I worry it is the same here - my DH spending so many years grieving this shocking, cruel situation (particularly being diagnosed young when we had our first baby on the way and in a very dire state where we didn't know if I would live a month, yet alone 5 years), there will be no sadness when I am actually gone. I know it is senseless to worry about this and I don't really want him or any of my family members to suffer or feel any deep sadness over me at all, either now or after I pass, but it does continue to haunt me in a way of wondering if certain family members are just waiting for me to die in some respects and growing fatigued that it hasn't happened yet, in a kind of "I don't want this but if it is going to happen, let's just get it over with" way. It is not about them not loving me and of course, no one wants my son to be without a mother, but it is just about wanting an end to the awfulness of this situation and the survival instinct of human beings to try to get out of traumatic situations.
0
