My Husband, My Life, My Love, My Family, My Cancer
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Good morning everyone!
Candy,
I know what you mean by depression. I have days I just want to throw my pills in the garbage and be done with all this stuff. I want my old life back. I started taking a antidepressant which I hope starts working soon.
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I am in bed crying. My grief over my mother has made it difficult. It's been 7 months today she has been gone. I just miss her so much my heart hurts. I thought I would go first once I got cancer and then she would be taken care of by family. Was never prepared for her getting cancer and myself being caretaker. I prepared to go first, not her. Gonna cry it out for now.
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Simone and Mara- Right there with you. And hugging you. Yesterday something was mentioned on TV, I don't even remember what exactly. But in the moment I thought " There is no going back to pre cancer days, ever." "When I got cancer it changed me, forever". And last night after supper I was washing the dishes and just started crying. Other times I am ok. I was just laughing at a funny cartoon on FB. But sometimes the cancer, my life now, just gets to be too much.
Mara- Oh my gosh !!! You both had cancer !!!! So sorry for the loss of your mom. I lost my mom 6 years ago. But she was older - age 80- and died of heart failure. I think it is a blessing that she died before my cancer diagnosis. I am glad she doesn't have to see me like this.
I am glad we are here for each other.
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I’m so sad to learn of Gracie’s passing and hope she was able to have some time with her family in that last week. I hate this disease so much. In addition to Gracie, two other women I know (in real life) died within the past week. One had been stage 4 for four years, and passed at the age 34. The other had been stage 4 for 15 years and passed two days before her 45th birthday. I’m lucky to have both a weekly inperson stage 4 only support group and also a young Womens stage 4 group that gets together every month or so, plus so many women her who I care about deeply. Reconciling the losses breaks my he
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Thanks Candy. Yes we both had it at the same time. She still worried for me as I was worried for her. I feel cried out for now so I am going to eat then wash my face. Just need to feel it, ugly cry and try to salvage today. This is not a daily thing so I have to keep pushing.
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Giddy~ that sounds perfect. You’re so sweet to suggest that for our sweet Gracie. I love you for caring. 💙 thank. You friend.
Jen~ it sucks bad! Cancer sucks plain and simple. Taking young beautiful women. I am gong to be four years out Jan 22,2020. I’m already totally exhausted. Zombie woman. The ibrance dance can be rough after 34 months. I’m tttiiiirrreeeedddd every second. I’m so sick of it.
Mara~ I’m in bed too honey. And my pillow isn’t dry either. Lost my dad May 11 2019. Still soo raw. It never gets easier apparently💔💔💔! Holding your hand
Candy~ want so much to throw away medication as well. Everyday. More and more each day.
Hi Simone~Hope your day is a good one. It’s sunny outside!
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Micmel, so sorry about your dad. That is still fresh for you and is terrible for you and your family who loved him. I will send some positive energy your way.
Going to do my best to dust off and eat lunch. If I feel strong, just going to walk on my treadmill and watch a movie. That should be helpful.
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Jen- It is good you have a "real life" group of women you can turn to. I have a friend that is Stage 4- bone mets. She is 7 years out. And doing good. She showed me her latest CT scan results and she is stable. Only on an AI and Xgeva and says she feels good. Other than her I don't know any "real life" women with Stage 4 MBC. What is scary is that some can live many years- the lady you know at 15 years, and some that post on BCO that are several years out. And then there are others - Gracie and the other lady you mentioned- that die within 3-4 years. Sometimes I just feel like a panic attack coming on - I will say "Oh My Gosh, Oh My Gosh, Oh My Gosh" when I think next month I will be 2 years with MBC. Do I just have maybe a year left???!!!!! I don't want to die yet. I am on a roller coaster and cannot stop the ride. I hate this.
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Mara~I-have days where all I do is cry in disbelief of what has happened to me. I'm so sorry for you as well I so wish I had a wand for us all.
I was sitting in bed. Like I usually am, and watching HBO, this movie came on and I wasn't really going to watch it until I saw the name of the program. “Alternative ways to end life" six new ways Americans are choosing to die. Of course I had to watch it
First highlighted was a “Reef" burial, they mix loved ones ashes with a tiny bit of cement, and form a solid block, the block is then placed inside a manufactured “Reef" to regenerate the white washed coral issues in our oceans. They put a non rust plaque in their honor on the front and they lower it under the ocean in an area chosen near a reef, and life lives inside with your loved one. Fish make it their new home and reproduction occurs to stimulate new life and growth. It was quite interesting to say the least.
Second Highlighted: was no funeral at all. “A living celebration". The person was still alive and a party was thrown in their honor, to give everyone a chance to say goodbye to the actual person before they passed, so nothing was left unsaid. The entire family took photos and memories of that day, people are sick of the depression and sad stigma of funerals and how draining on families they are. I tend to agree myself. I do not want a funeral of any kind.
Third Highlighted: Green Burial
No coffin is used, you yourself while decently well travel into sanctuaries that are just a natural burial area. No boxes. No formaldehyde, no toxins into the body. Choosing to place your body in a colored chosen thin shroud with flowers, peacock feathers and soil and tree leaves and nature basically. A tree is planted at your head, and you decompose into the tree and grow into the tree and return to the earth naturally. It was amazingly beautiful. After the passing, chosen family members wash the body, clean in honor of unconditional love and bonds. It was beautiful, until I saw that, I wanted to be cremated. Hmmmmmmm not sure. Now
Fourth Highlighted: Space Burial
Ashes/remains are placed in a rocket and the family gathers around and their loved on is rocketed out of the atmosphere, into space to forever roam free. They show the family witnessing the entire process.
Fifth Highlighted: “choosing your own right to die” knowing you're terminal, you receive the concoction from your palliative care group of strong life ending narcotics in a kit, that on the day you mix and YOU must be the one to drink it down. You start sleepy, then coma, then within a half hour you're gone. They showed it. Looked like a peaceful ending to me. Another hmmmmmm. Gave the family the chance to surround their loved one while the death was occurring and they played soothing music and held hands being with him in full support. It was kinda beautiful.
The sixth highlighted: was for a freaking 5 year old who has terminal cancer. He said he wanted an “after life celebration" he knew he couldn't run and play with the other kids, so when he was gone, he wanted to know that other kids were playing for him. He wanted 5 bouncy houses, face painting and crafts, a lot of games and balloons and Batman and some other super heroes. His parents did that for him. However heart wrenching it was to see all those other 5 year olds playing wondering why their child had to die. Wrenched my soul.
I cannot believe I am 49 years old and I have to think about things like this. I cannot imagine my sweet beautiful daughter and sons and my DH, my person,going through such pain. Death is horrible. Although we can't out run it. It seems like finally Americans are opening their minds to anything other than that. Morbid traditional funeral so you spend two straight days stuck in this horrible Crying pattern , knowing the entire point is sadness. I don't want that. I want music played. And stories. Not tears and fear. I hate you cancer and hope you're the one that's soon terminal from all of us!!!!!
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Candy, I hate the ride myself. I have the most agressive breast cancer and it spread first to my brain which was my biggest fear. I spent almost a year not expecting to wake up let alone the fear and depression the brain met caused, contantly on vigil looking for symptoms, siezures etc. I did have some but eventually my said screw it, get on with whatever life is left. I just started walking more. Days I don't immediately walk are usually bad for depressive issues as stated above. I am foolish not to actually have that be my first thing to do. The exercise helps me get some endorphins. I have a nasty sweet tooth and am unwilling to give up the bad stuff so plan to walk longer and slower. Might just do 2 mph maybe 2.5.
Candy, I will also say that it is normal to experience these feelings as you come up on 2 years. Eventually, as you pass the markers, they will impact a bit less and I agree, it is important to have real life support as well as the online. Glad you have that.
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I am so sad to read that Gracie died. I remember her posts so well. I'm glad she isn't suffering now. Rest in peace, Gracie. 💔
Mae, I love what you suggested to tell anyone criticizing disability. "I'll work 20 more years and you take on the MBC." I know that's not the exact quote but it was perfect.
Lynwood, good news!
Micmel, I second the yogurt recommendation for mouth sores. I had never had one until this summer but having yogurt with active cultures took care of it.
I took a break from here due to politics. I try not to mention it since half the population is likely to feel quite differently. Looks like I missed a tempest that started on the rant thread and moved here. I'm glad I missed it and sorry that it happened.
I'm doing fair. Not as well as I was. Doc wanted to change all my meds but I said I was keeping Ibrance for a little longer and he took away the letrozole and I've started Faslodex shots this week. 💉 We will see if this combo helps.
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Micmel,
Sorry to hear of your father passing. I lost my mother 6 years ago to pancreatic cancer and I still miss her.
Mara,
I am Sorry to hear about your mother too.
Jen,
Sorry to hear about your two friends dying. That has to be tough. I was going to try to find a support group. I would love to meet and hang out with other stage 4 sisters. How did you find a stage 4 support group?
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Micmel, I watched that HBO documentary last night. I thought it was amazingly beautiful. I cried very very hard at a lot of it but it was partly sadness, partly fear and partly an unavoidable goodbye that we are all going to go through. Another part of me felt good knowing that control at the end could be possible. I too think I have changed my mind about cremation and thought the green burial was absolutely stunningly gorgeous.
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Moomala~I completely and fully agree about the Green Death. Such a peaceful feeling I got watching. I felt like it was I, iwas grieving for. That brave man drinking that drink. That's strength, His beautiful wife watching. Ugh💔 I don't know how many times the human heart can feel broken. Watching that woke me up.
I also realized watching, I am in a perpetual state of grief. Anything sets me off. My dad, my life. My fears of loosing my life and my precious family dealing with such things. I am freaking 49. 49 49 49 49 49 Sorry just had to make sure I wasn’t dreaming
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hello Muddling! Missed you. Glad your back. We love you !
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Muddling-- Happy you are back !!!
Mara- I too have a sweet tooth. I do not plan on giving up my sweets. I am going to eat the foods I love for as long as I can!!!!!!
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sweet tooth omg me too. I could eat an entire cake myself. Some days i probably have. But I also don’t eat a lot during the day. I’m noticing that my feet ache so damn bad. Like wow. It’s been that way always. Cupcakes. Hand em over. Today has been a gloomy day for me emotional. Somedays Are of course better than others. This day sucked. But at least I got to live it. I hope everyone is doing at least ok! Cause that’s all I got today!0 -
Hi everyone! I’m so far behind but just want everyone to know I see and hear you, sadness and all.
Yesterday I traveled with my former boss to Dallas (3.5 hour drive) for the retirement party of our counterpart in that area. The party was nice but retirements feel like funerals to me 😢. After we went out for dinner and margaritas!
I have no plans or appointments until September, so I’m just gonna relax a bit. Goodnight and sleep well.
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Sounds like every one of you feels like I do tonight. That's why I'm writing so late tonight instead of sleeping. Having trouble with my brain going twenty directions, mostly sad direction. Sick of this cancer crap, sick of making almost every decision based on how long will I live, sick of even my closest family not really getting what it's like, sick of hearing what I take as criticism when I lose my filter and say one little, meaningless thing that makes them defensive, sick of thinking give me a break, how can you not realize how petty you are being, sick of trying to please family so they wil feel happy, usually at my expense, sick of trying to explain what my life is like, how do you explain that almost every problem others have is miniscule in comparison? Always wanting to say give me a break. Sick of thinking does anyone I know and love get it? Sick of spouting off because their words and attitudes are just ridiculous to me now. They don't give me a break, saying how could you say such a thing? Because, I'm at the end of my life and I need to say some things I've always held back, not wanting to offend you. Now, I don't have time to wait. I need to tell you the truth whether it hurts or not. I won't have time to give you much needed advice that could change your life. My time is limited, the behavior I see in you must change. If I don't say it now, who will tell you? If you don't change you will have deep regrets in later years.
I'd like to say Rant over but it's not a rant, it's truth. I know each of you have felt, are feeling the same frustrations. Denial is not an option anymore, my time on this earth slipping away. I have a desperate need to say the things I've never said. Those words could make a huge difference to my family, especially my adult children. But, it's painful when they get angry about petty things they consider insulting. Then they attack me. Their defense mechanism is alive and well. Not getting how important my words are. Wanting to say Don't major in the minors, you will deeply regret it. I'm trying to save you from that inevitable regret. You have time to change, I don't.
Will sleep come tonight? I don't know. Deep emotions at night are the worst. Morning is brighter, easier to become distracted by business. Morning come fast for me please.💞
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Grannax~Oh my sweet sister... I just woke up , after a later night than usual. My second bf is sleeping over dbecause her air conditioning unit went kaput. so I am trying to cry quietly. I just Lost my father, one of my siblings didn't get a chance to say goodbye, basically didn't care , narcissist behavior since birth. He will live with regrets. Important life altering regret. If you have things unsaid within yourself, you need to let them out. If these things don't come naturally, will they even receive them? If you're worried about how to even speak for fear of them not understanding a damn thing you're saying. Sometimes when you fly different airlines, you arrive at your destination at different times. They aren't accepting of you sometimes unconditionally supporting no matter what, you've shared this. But they need to. Expressing this may make them realize a lot. Tell them in the simplest terms “I am dying, I don’t want to fight, I want to love and I need my family “
I find that familiar. Some family cannot be around me because of miles. My other sibling doesn't care about anyone or anything. (Narcissist) my sister I love so very much.
If you speak and they have that glazed over look,
Speak it in a letter and mail it. So you can't have the immediate wrath. The grandchildren are the reason none of this is ok. They need you.. they love you. You CLEARLY. Are crazy about them. Some people never change, but expect us to alter ourselves when we see them. (Step mother-narcissist) they just don't get it. You could be bald and crawling across the room and someone just may step over you. (Had it happen, during my DD and DSIL explosion around her wedding time). Sometimes people just can't accept things. (Ignorance and denial together) they float along and blame us because we can't be who we once were. I'm always worried about being the hole in the bucket. I realize my body is exhausted, beyond beaten by treatments, we are expected to go on, expected to suffer. But they need to get a clue that the emotional suffering and resolving so many feelings inside of us facing our death, there is NO MORE ROOM for anything but support. Don't fight with me. I can't take it. I'm freaking sick people. Soo sick. Make a copy of your diagnosis and mail it to each of them. Saying attach to fridge please. I'm not dreaming I have advanced cancer people and one day. I won't be your punching bag. I love you endlessly but this is how I feel. Like it or lump it.
“It's better to be hated for who you are, then loved for who you're not".
You deserve clarity and honesty. I believe in you beautiful woman. Don't settle. Just find your inner peace. You have too. If within your mind you honestly feel you're time is running out (we all understand this completely) do whatever you have to do, to make sure- you—have come to terms with yourself.
I love you dear woman
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Grannax, I second the letter for saying what you want to say without immediate family blowup. You can be more clear about how you feel without interruptions. It can be easier. Send it to them if you want to say it but remember, you can also choose not to send it as well and still feel catharsis of those pent up emotions.
The younger brother I decided to cut out of my life was stressing me out around when our Mom passed away. I decided to write a letter because I knew it would help my own stress about cutting ties. I did not send it but it did make me feel good for a while. He did try to keep up with me here (long story not going to go into details here) so on the thread he was invading to stalk me, I did call him out at that point and wrote my feelings. I and quite a few others took swipes at him.
My feeling is that if you don't want to confront to keep the peace, write a letter and don't send it. Having grandchildren in the mix does complicate things. If you do want them to know, I still recommend the letter and leave it to them to respond, just don't let yourself be run over and be open to explain what you are going through. Cutting off family members is like another death and if contronting it indirectly first may be a good option to clear things up. You do need to look after you.
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Good morning ladies
I’ve been reading and am sorry for all of the losses and pain. Compound struggles and add cancer it becomes overwhelming.
Family dynamics and roles we play are often hurtful. I didn’t cut my DS off but he cut me off and although it hurts I’m fine with it. He ostracized his son for 11 years and never even let us know he existed. Now after we accidentally found out he wants to dictate what we do and say. No thanks. It did keep me up at night for awhile but honestly now I sleep well and dont think of it at all. I’m glad it happened before I died so at least our grandson would know he is loved and we are his family.
Writing a letter sounds like a great idea. I would read and reread edit it and then send it. Of course we all know the intricacies of relationships in our families so please do what makes the most sense in your life.
I’m going food shopping with a friend and it’s a big deal. I haven’t shopped in over a month. My DH keeps going and he doesn’t always get what I want so this is a treat.
Get some rest ladies we have some mess to clean up.
Tanay
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Simone, the all stage 4 group I go to is ru lm through the Integrative oncology center where I’m treated. The young women MBC group was started by someone dx in her late 20s (who is thriving at 17 years now - bone and lung, +++) and facilitated by another also dx in her 30s (brain ER/PR+, I think seven years ago).
It helps that I live in Los Angeles. There’s not only a lot of people but I think the culture here is one of gathering and welcoming complementary therapies. We have multiple groups dedicated to supporting people with cancer. I choose to just focus on the stage 4 MBC ones
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Hi all. Home from church service and a GOOD meal after. We raised our financial goal to give to missions. And the food was WONDERFUL. And Yes I had my sweets- a slice of peanut butter pie and a piece of chocolate cake with a layer of peanut butter on top sprinkled with peanut butter cups and M&M's. Sugar high, but worth it. But also had good-for-you foods of Italian beef, potato salad, and cole slaw.
Grannax- I read your post from last night. I hope you are feeling some better today. I have my depressed moments also and yet today I am more chipper--probably the sugar. LOL.
Micmel- Hoping you are feeling some better today also.
Tanya-- Hope you enjoyed the outing for groceries. I understand. The simple things people take for granted.
Time to rest and let the food settle.
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Thanks Jen. I think I'll start looking for a group. I live near Phoenix and should be able to find something.
I hope everyone is have a good Sunday.
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Candy, the dessert sounds fantastic, glad you liked it. I really loved Reese peanut butter cups before my body became intolerant to peanuts. That sounds divine.
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Mara- I have never had that dessert before-- Chocolate cake with layer of peanut butter on top sprinkled with M&M's and peanut butter cups. Someone said the pastor's wife made it. And it was a big hit. And she also made the peanut butter pie. One lady was scraping out the pie pan to get the very last bite. I can get her recipes if you want. Oh wait, I reread your post about intolerance to peanuts. Sorry.
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I am not able to talk much yet, but I'm reading....don't feel i can be all that supportive when I'm just trying to hold me up right now
"Morning is brighter, easier to become distracted by business. Morning come fast for me please.💞" - Grannax, I understand this feeling so well, its been my wish every night for almost 3 months now.
Hugs to you all.
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Don't be sorry Candy. I can live vicariously through other people's tastebuds.
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Candy all that peanut butter and chocolate sounds fabulous. Yum
I did enjoy my shopping. My dear friend usually takes me out once a week. She doesn’t treat me like I have cancer or anything which is good. We still fight with each other and everything no special treatment from her. She’s just nice to me bc she’s a good person.
One thing I was shocked to see on my shopping spree was a man with a tank top muscles bulging with tiny spandex shorts and in the rear it was see through to his rear end with a thong at a grocery store on Sunday. Yuk yikes. I don’t even see women dress like that at a grocery store. Times are changing.
Tanya
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