Life does not end with a stage IV diagnosis (really!)
Comments
-
Welcome funthing,
I started this thread to help others understand that a stage IV dx is not an immediate death sentence. Some women can have many good years and during those years we all hope that new treatments come along to extend those years even further. It may be tough at present, but I hope that eventually you can put panic and fear in the back seat. They do nothing to change things and rob you of today's joys. This doesn't mean you will never feel down or stressed, but you just may learn to give bc the finger as you gain control of your emotions (and not let bc control them). I am almost five years out and happily living and loving life. Take care
0 -
Thank you so much. Hope is really what you have given.
It's hard to find positive right about now. I hate the vibes I get from some doctors . Sometimes a little hope goes a long way.
I'm definitely doing those finger exercises. Lol
Thank you for starting the thread.
I'm not too political but I was saddened by Nancy Reagans passing. What a survivor.
0 -
funthing, I agree with exbrn, that panic, fear and anger all rob you of the joy in front of you today. Today you are OK yes? Try and find something to take your mind away from all of this. A long walk, idle shopping, playing with some kids? Of course we all have our moments of fear or despair or anger or all of the above. I try to allow myself to have my moment, let it out and move on with my life of right now. Try not to project into the future, it does no good to stress on the what if's..... On that note, I finally decided to see a counselor at my center today. Coming up on scans next week I needed to vent/talk to someone who knows what it is like going through all this. (Besides the wonderful women here of course! But in person....) It was immensely helpful just to have a sympathetic and non-partial ear to bend, and gave my DH a break. She was full of compassion, empathy and good ideas for staying on balance. She was a very calming and positive lady and I am so glad I went. It does get easier over time.
0 -
hi
new to this discussion. exbrnxgrl! i agree that stage 4 diagnosis is not a death sentence but with TNBC, I feel it is...I had stage 2 node negative TNBC 2 years ago, underwent 6 months of chemo/rads and declared cancer free by my onc. but here i am, exactly two years after i am diagnosed with TNBC mets to my liver/lungs/bones, unfortunately, i had no symptom until i had it in my three organs. i feel alone because (1) i don't find young women like me (29 yrs old) in my cancer center with this disease; (2), TNBC is rare or you can say out of 10 women, there are 2 women are TNBC. i am hopeful but what i read mostly is so scary that i feel im done and should say goodbye to life.
Much Love to all wonderful ladies
0 -
Mary,
I am so sorry that you find yourself in this situation. I believe we have a thread wfor young women with breast cancer and I hope this will offer you support (though you're very welcome on any thread!).
I do want to be clear that I wrote that bc is not an immeddeath sentence. It is, for most of us, an eventual one. Though far too many die too soon, I have great hopes for better tx and a cure in the future. Take care.
0 -
Mary I'm so sorry you find yourself in this fix I know exactly how you feel. You are not done far from it you need to find yourself some hope. After my diagnosis that's what I did after I was done bawling for days on end ...I digress . So have you heard of Chris Karr I found her documentary very helpful so helpful I went out and bought her book. She is stage four as well and has it in her lungs and liver. She is young and perky I hope you find it helpful anyway. You also aren't alone we are all here too. Big hug from Canada.
Wendy
0 -
MaryK. I wanted to let you know I'm hoping that there is something out there some day that will save us all.
It truly angers me to hear your age. Even though everyone is young at heart.
I do not know. I had a Mri today and it looks like I have fluid around my heart. I feel ok. Of course I peeked at the images.
Waiting for the official.
Artist at heart thank you.
Everyone thank you for awesome advice totally correct. I let 7 yrs get away just living in stress. Always been a worry wort.
I'll feel like running. Let's run together.
Iceland is one place my son would like to visit I heard a flight is pretty reasonable. I'm not sure the best time to visit Im not into cold.
Love California so want to retire there one way or another. Palm Springs California. Love the Mid Century Mod.
0 -
Caryn, I loved your pictures. You look great and very happy!
GatorGal, that your young grandson would do that for you has to be one of the sweetest things I've ever seen. You must be so proud of him!
I was surfing this morning and saw something on Facebook I thought I'd share here. Some of you have probably already seen it, but in case you haven't, you're in for a treat! It's about a 90-year-old lady who was diagnosed with what sounds like advanced uterine cancer and decided to just live life rather than pursue treatment (at her age, this was a very reasonable decision, IMO). Her family set up a Facebook page to document their adventures. It's inspiring, even if some of us are too young/tied down/financially limited/too ill to pursue everything she is doing right now. She is definitely an example of the spirit of this thread! I think we can all do some of the things she is doing, even if on a smaller scale, just living life to its fullest in whatever way we can. I'm working hard on this myself, after going through several months of depression/adjustment post diagnosis.
Article from today.com about her story: http://www.today.com/health/driving-miss-norma-wom...
Her Facebook page, Driving Miss Norma: https://www.facebook.com/DrivingMissNorma/timeline
I hope you all have a great week and find something good in each day!
Tammy
0 -
Tammy,
I have to admit that there are times I would like to just take off with my DH and see the country. It would be nice for both of us to forget about cancer and feel free to do whatever we want. When I really think about it though, I want to stay here, continue treatment, and spend as much time as possible with my family. If I were 90 years old, it would be a different story. I admire Norma and her family, and hope they are having the time of their lives. I think she made the right decision. Thank you for posting the link.
Lynn
0 -
Tammy, Great story and links there! I love it...Lynn, I too like to think about something like that but am such a homebody, I need my home base for my kids, relatives and friends to come.
0 -
Lynn and Artist, I agree with you! If I were 90 and in her exact situation, it would be a different story. What Norma is experiencing is more of a "movie ending" that many would wish to be free enough to do but isn't practical in most or nearly all cases. I just thought her giving cancer the finger, so to speak, was inspiring in a way, even if we are taking a different path. I guess I was mostly inspired by her embracing life instead of giving up, in the same way we are trying to embrace life here.
I couldn't be gone that much, either, and I have yet to carve out time to "get away" since my diagnosis last September because I'm a mom of a high school junior, and it's just not practical to run around seeing all the things right now. I'm also a homebody and really only dream of a trip like Norma's! I will still enjoy watching Norma getting to see all the cool places, though. I just wonder how her health is through this, if she's in increasing pain, etc. They don't really mention that part. She sure has a good family and must have been an amazing mother to raise a son who loves her so much.
0 -
I have come to a realization as far as this nightmare that is cancer is concerned. It's been nine months since my stage four diagnosis and I'm still here. Some days are bad and I have no clue what determines that I'm going to be sad and cry all day it's totally random for me. However on the other days when I put cancer in a little room in my brain and lock the door. Those are great days where I live a "normal" life where I laugh and love and do things that make me happy. For those days I will fight for till there is no breath left in me. I hope the sad days are becoming less and less as I learn to accept my situation. Joy is all around us especially at this magical time of year that is spring. I'm sending you all a big hug.
0 -
Hey Wendy....ditto!!! On all of it!
0 -
Lovelife, I am inspired by her too and think it is fabulous! What a gutsy lady and I was thinking the same thing about what a loving family she has! I hope she is feeling really good and just slowly fades into the sunset in her own time. Well said Wendy....I like the vision of locking that little door and throwing away the key! I hope my bad days become less as well and I can learn to accept what is.
0 -
She is doing it her way. I applaud her. To a small degree, I do the same. Making memories for my grandkids is my most important goal. I invited my 8 year old granddaughter over on Saturday. She's a bit hyper and hard to handle and when the entire family is here it seems like mom and dad fuss at her all the time. I just wanted Ella time. I taught her to play skip-bo because I used to play it with my aunts and it was a great memory for me. We also played phase 10. Listening to her giggle as she whipped me was such a joy. Then she and I made pizza and had it ready when her mom and dad and little sister arrived. I hope she had as good a time as I did. And yes, mom and dad started fussing at her right away for getting pizza sauce on her shirt. I just whipped it off her, got her a shirt of mine to wear and said no biggie, accidents happen. She wanted to come over the next day and do it again.
0 -
I crave having a day like that Gator! I very well remember doing things with my grandma when I was 8! Wonderful memories....
0 -
GatorGal, the day spent with your granddaughter Ella sounds fabulous ! I hope one day to have grandchildren and create special days with them. Ella will always love how special you make her feel.
0 -
Artistatheart I wanted to ask you how your finding Faslodex I'm slated to start it April first so I was just wondering about SE?
Wendy
0 -
Greetings and Happy St. Patrick's Day to all. I am taking my very pregnant younger dd out for an early birthday present (on her actual birthday she will have an approx. 10 day old baby!). We are tremendous Broadway musical fans and tonight we are going to see our favorite, Wicked! This is only our third time 😊. Hooray for the green girl
0 -
I LOVE theater performances exbrnx, that sounds like a blast. Plus waiting on a new grandchild, priceless!
Wendy, Faslodex has been incredibly easy on me. In the first few loading doses I had a few bouts of diarrhea after large meals.
TMI.....! I have learned that staying hydrated and eating well helped. I have had no SE's lately, in this 3rd round, to speak of except maybe some sore joints here and there. But I sort of attribute a lot of that to letting my fitness fall off this winter. My hair still comes out easily and feels thinner to me, but it looks fine. Luckily I started with a lot. Hope to get moving more now that Spring is Springing! I had scans today so hope to God it is working. Should find out soon.0 -
Artist, good luck with your scan results. Hope you find the faslodex is doing its job!! Happy Easter everyone. I will be in Florida on a family/orioles spring training trip with my grandson and may not be logging in. Caryn, I love any live performance .... Even kids! So glad you and your daughter had a good birthday celebration.
0 -
Artistatheart good luck on your scans don't let scanxiety take over. You got this😊
0 -
Artistatheart...prayers for good scans!!
0 -
Artist, heart felt prayers for some awesome scan results. 🙏🏻 The scanxiety is almost the worst part about this dx. My mind always goes south in the waiting room. Why is that???
0 -
Chelle, Me too! They always say to take a nap and I'm like " Are you kidding, my mind is racing a million miles an hour". So my Onc called with preliminary results and says Stable to slight improvement! Yea!!! My appointment on Monday she said we ca talk about some smaller stuff??
So wondering what that means. Always waiting for the other shoe to drop I guess. I have to say I hate every minute of this whole journey, but today I'll take the good news. Thanks for all the well wishes all!
0 -
stable and slight improvement are beautiful words! Happy for you
0 -
Great news, artist! YaY!!!!!
0 -
Glad to hear there is improvement artistatheart! Good news is always great to hear, especially on a Friday!
I am nervous for my first scans that will be coming up in less than 2 weeks, so I have a bit of scanxiety as well. I'm doing weekly Taxol and Herceptin/Perjeta every three weeks, and I know the stuff is working as I feel so much better in my lungs and my tumor markers are dropping like crazy, but I am really hoping I can quit the weekly Taxol. I'm tolerating it really well and am still working full time and even teaching yoga classes a couple times a week, but I sure would like to have some hair again! Oh well, I will be nice and cool for the warmer weather that is coming, I guess!
I do feel like I've finally turned a corner and am feeling like myself again. When I got my diagnosis just before Christmas, I felt like my life was almost over. But now I feel like I can deal with this thing. I am not breaking into tears anymore when I hear certain songs, and I don't get all misty-eyed when I look at my son, and my husband has finally stopped treating me like a china doll that might break. I'm planning summer vacations, I'm drinking my green vegetable juice, and I am cheering each and every one of you on!
0 -
DGHoff,
I love your post. I was diagnosed in December as well (stage 3 at first, stage 4 not until February) and in chemo currently, and I am finally turning the corner too. I had a moment of shock yesterday when I realized I actually felt happy, I hadn't had that feeling in quite a number of weeks
0 -
DG and Jen, wishing you both well as you are so new to the diagnosis. Am glad you are learning to cope and move forward.
Artist, glad to learn of your stable results
0
