Life does not end with a stage IV diagnosis (really!)
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Terre,
Such good suggestions, I particularly like the one about the giraffe, it may be hokey but who cares if it works, imagery can work wonders, sometimes I imagine my self as a dancer and lose myself in the music.
This may sound crazy but I'm actually happy, not that I don't have dark days or think about serious issues, but i can handle them without sinking into a serious depression.
I'm newly diagnosed with stage IV and at first I focused on negative what if's, wondering if I should plan anything, however that leaves you in a dark space without seeing that life can be good and all we have anyway is today. I feel great and am fully active, I don't intend to stop doing what I love and will treasure every day that I wake up and can look forward to the day.
My first scans will be coming up in two weeks and I'm sure I will be on edge waiting for the results, but I'm hopeful and I will deal with whatever comes, the choice is mine and not BC.
Kathy
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Well said, Kathy!
I went through a rather horrifying divorce many years ago. As I was moving out, my SIL called 911 (in the US) and said there was an armed home invasion going on. Twelve cop cars, including SWAT, showed up.
I was a basket case at best. I went to counselling and the counselor said "why would you let someone you don't like and respect dictate how you feel and live your life?" It was an "ah ha" moment for me and something I've carried with me since when I get wound up about things. So I try to treat cancer the same way - why should I let something negative dictate how I live?I'm terribly prone to depression; something I've battled for many years. So I do have to work a bit to stay happy. But overall, I am happy.
Hugs,
Terre
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Rena,
I am recently diagnosed with stage age iv. This is my favorite thread to read. I try to stay positive, and some of the other threads lead me down the wrong path to dark thoughts. I spent the first week or two after my dx thinking that I had no future, that I wouldn't see my grandchildren grow up, that I would be suffering with terrible pain for the little time I had left, that there would be no enjoyment left. Those statistics look so depressing that it was hard to see beyond them. Then I woke up one day and said to myself, "Statistics are just impersonal numbers. Someone has to be on the good side of those stats, so why not me!" I feel great, and I take one day at a time. I know that I am fortunate to feel as good as I do, and I realize I will have my ups and downs. I take full advantage of my support system luckily my DH shares my positive outlook and that helps. I also have an onc and breast surgeon who support me. I have planned vacations for times as far out as a year from now.
This thread gives me hope, and that is invaluable. I also find encouragement when I read the thread about people who have lived 10 or more years with stage iv.
I will say a prayer for you. I hope we all continue to feel good and enjoy life. We are lucky to feel so good, but we also share the burden of stage iv dx and have a right to post here.
Lynne
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Rena,
Welcome aboard. I don't post much, but your story sounds very similar to mine. I was diagnosed in January this year at Stage 4 straight off the bat, so I never got used to having cancer before I was told I was terminal. I was already clinically depressed before that shock, and went badly downhill from there. Chemo was promised to me as a cure then yanked away the day before it started, as I was "incurable" and "chemo won't save you".
Physically I'm fine. I've had surgery and radiation, and am on Tamoxifen. I get the occasional warm flush from the Tamoxifen, but otherwise it's been relatively plain sailing. I don't know if I'm NED, because my oncologist doesn't want to scan me until Xmas, and there is apparently no point in radiation on my hip mets until I start getting symptoms. I have been given a tentative expiry date of 5 years.
But mentally, I have been a basket case. I had to give up my job when I had surgery, and have been sitting at home waiting to die ever since. I recently realized this was probably not going to happen right away, and sought help from a psychologist. I have been diagnosed with "Adjustment Reaction disorder, with mood disorder" (= PTSD and depression)
It was discovering this thread that really turned things around. Reading the wonderful stories of the women on here made me realize that I might as well carry on living while I am waiting to die. 5 years is a long time to wait.
I am now, with my psychologist's help, trying to build a new life for myself. I feel that the "old me" died in January, and the new me is currently in some sort of birthing process. My best friend described it as a metamorphosis. Before dx, I was a caterpillar, then I was in a cocoon for 6 months, and now I am emerging as a butterfly. Same DNA, but a completely different being. If you break open a cocoon, you will only find a pile of goo, but once the butterfly emerges, it is free and can do anything it wants.
Completely loopy? Probably, but once my wings dry, I intend to live my new life for as long as it lasts. However long that is.
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I just want to say thank you for starting this site. I am also trying to lead a normal life with stage IV. I am in my seventies and was diagnosed from the get go even though I had mammograms every year for 40 years. (dense breast and ultra sounds never we're suggested). I am a widow and very fortunate to be able to be retired. I truly relate to so many of you and try to be a happy lady. Looking forward to many more years of enjoying my family and going out to dinner, art fairs, the theater, walking on the beach, drinking wine and living the good life. Barb
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Rena welcome to BCO. it has been a place for me to find a it of sanity during my "journey" The first year after my diagnosis I felt fine and manged to settle a few things that I knew I would have to find ways to deal with. Moved my mom i law to assisted living, daughter got a job on this coast and moved home and then into mom in law's condo Daughter got engaged SIL got job on this coast Spent a happy year helping to plan the wedding (daughter is so darn traditional big wedding registered for china etc? I still don't have fancy china or crystal, my wedding had 13 people including us.Next anniversary is 44years of legal marriage and they said it wouldn't last LOL OMG) DD is now expecting a girl. First grandchild for her in laws too but they live 3 hours away and we live a few minutes away from the kids.Meanwhile iI keep on doing what I can while I can and learn how to compensate and work around physical problems that get in my way. I'm glad to hear stories of people who are dong well although I wish it were me that was still living closer to my old normal. Taking naps and slowing down is not all bad.Just wish it were easier to get approved for medical pot in my state
Charlotte
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Terre, I like your ideas for what to do when your mind goes to the dark side. It happens to all of us, no matter what stage, especially when you're first dx.
I think your ideas are worthy of their own thread, somewhere on the forum that those not IV might read and be comfortable responding to.
I agree with you that because of our dx, we have all contemplated our mortality more than the average person and that experience changes us. Perhaps it gives us wisdom, but for the most part it feels like a burden, like seeing something you can't unsee.
Last week a colleague of mine died from a botched D&C! She was the same age as me (54). So unexpected and sad. Reminds me that all the worrying in the world isn't going to change a darn thing. When its your time, its your time.
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Suems - we do need to get together. Coffee in Stratford perhaps?
My original MO was Dr Gloom & Doom... The one I have now in Palmy is amazing. Won the Queen's order of merit for his work with BC and is so upbeat. He thinks I have 10 years "easily" and more likely 15+. He also thinks we're less than five years out from Stage IV BC being treated like a chronic disease (like diabetes).Thank you for the kind words, debiann. Maybe I will start a thread for people to give ideas for getting through this.
I've told this story before, but my friend Bob, who was one of the first people to get protease inhibitors for AIDS in the mid 1990s, was in hospice waiting to die when he got the highly experimental treatment. And in 2008 was best man at our wedding. He died this past January. Not from AIDS. He tripped and fell down some stairs, whacked his head, and fractured his skull and died. Another friend went into hospital to die in the 1970s. He was in his 30s with leukemia. He got interferon - thought to be a cure all wonder drug at the time. Highly experimental stuff at the time as well. At any rate, it worked on his leukemia and he's still alive and well. Takes one pill a day.
So, you just never know. All we can do is hang on to hope, I reckon.
Hugs to all,
Terre
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Terre, Thank you for your posts they always feel genuine and positive in nature.
Rena, Welcome to BCO there are wonderful women on here who are so helpful.
Andrea, Your pictures are beautiful.
Lynne, the support on this thread helps me stay positive when I get a little anxious.
Caryn, I thank you for starting this thread and continuing to just be yourself. I always enjoy your posts. I just retired after 28 years of teaching. I think September will be interesting. First day of school always so special. I will have to live through your posts of conferences and report cards and classroom antics...
I hope everyone is enjoying their summer as best as they are able . I hate winters in CNY but I love summers here, it reminds me of why I live here.
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kiwi - what a wonderful list! I'm definitely going to have to remember these (in fact, I just copied them into a note on my computer - hope that is ok?) What you said in your post after the list really resonates with me as well. Earlier this week or last weekend, I mentioned that I think I am "living" better in ways now than before, and the 2 questions you asked are really why I think I am living a more true to myself life now : "So, how would I live my life if I didn't know? And how much more can I get out of life knowing what I do know?"
So, instead of a black cloud or a sword hanging out above/behind me (which believe me is still there on many days), I try to view it more like constantly having Robin Williams' saying his Dead Poet's Society line in my head- "Carpe diem, seize the day. Gather ye rosebuds while ye may."
To everyone else, thanks for sharing the pictures, stories, and everything else that makes this thread be one that I can go to any/every day no matter how I am feeling. (Are any of you like me that on dark days you can't go to some of the other threads even if they are in your favorites because they put you into a bad place? I want to still go there and support people, but some days for my health, I just can't do it.)
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Teacher911,
Congratulations on your retirement! Yes, as teachers our lives have a rhythm defined by the school calendar. I know you will find wonderful things to fill your life with and of course,you're always welcome to reminisce about a teacher's life with me. I am getting excited (school starts 8/19). Lots of changes in our rooms as everyone got huge wall mounted TV monitors and Apple TV, replacing our document cameras. I have to totally rearrange my classroom, but I was never one to keep things the same forever, so I look forward to it. I'm I'm also piloting 2 potential math adoptions. Challenges, frustrations and rewards? I'm all in!
Enjoy every minute of this new chapter in your life.
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KiwiCatMom - who is your MO in Palmy? All of the oncology team serving Taranaki come up from Palmy every few weeks. The MO I am with looks about 20 and seems to be just going through the procedures he was taught. I think he missed the lessons on empathy and on Metastatic patients.
Coffee sounds wonderful! I would love to meet you halfway some time. It would be great to meet womeone who understands where I am at.
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welcome Rena
Terre - great list. We use the and instead of but at work and it makes such a difference to the team outputs. I'll wats choose to grab life by the horns.
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Thanks for the kind words, all.
Suesm - Richard Isaacs (Goggle Dr Richard Isaacs, Palmerston North). He's affiliated with Massey. I know it's a long drive for you, and would be expensive, but I'd strongly recommend seeing if you can get a private appointment with him. As I recall, it was about $425. If you do, you're welcome to stay at our place. He agreed to take me as a public patient on one condition: I am to send a card to my former Dr Doom MO every year at Christmas and say "still here!"
Dr. Isaacs goes to the international conferences, keeps up with international findings. Two years ago, he went to the big cancer conference in San Antonio Texas and when he got back, he said, "I'm going to fight to get Ibrance approved here because it's perfect for you and I have several others like you who it would be perfect for." He's the one who got Pharmac to fund the full course of Herceptin, hence his award. Amazing man. I'm slightly in love with him I think. Congrats on the retirement, Teacher! What an accomplishment - 28 years! Will be sending thoughts your way when school starts - I'm sure it will be bittersweet.
Nancy - So glad this page makes you smile.
So...based on the suggestion in an earlier post...should we (I?) start a page with "tips and tricks" to living while dying? I'll give it a better name, I promise. I mulled it over last night and I know that I've gotten so much amazing advice that's helped heaps, and I'm sure others have too. Carpe Diem indeed! If you think it's worth doing, I'm happy to start the thread.
Sunday here; blue sky above and fog over the mountains. Really pretty. And only chilly, not freezing, which is a bonus!
Hugs to all,
Terre
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Kiwi, its your choice of course, but I think such a thread could be very valuable to all bc sisters not just stage lV. The one thing we have in common are the dark days due either to tx, fear, the inability to work or meet our families needs in the way we used to or simiply the uncertainty of our future. You have very good insight into how to rise above the dark days. I think you could inspire many to crawl out of the the hole cancer pushed us into.
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Thanks Debiann...I'll do it this evening. Hoping others will put their good ideas on it too!
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Rena
Welcome to this thread. I think we are all in different places and need different support. But for me the. mental stuff is hard. I have no wisdom today just - I hear you and agree - life looks different now and planning is really difficult. I am glad to have your voice here.
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Rena
Welcome to this thread. I think we are all in different places and need different support. But for me the. mental stuff is hard. I have no wisdom today just - I hear you and agree - life looks different now and planning is really difficult. I am glad to have your voice here.
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Kiwi - I agree that a thread like that could be really helpful for people!
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Wow! I can't believe how far I had to go back to read all the posts since my post! All wonderful, uplifting and thought-provoking. I thank you all for the great advice...everyone is different, but perhaps each can take a piece of it and use it to their advantage. Not sure which piece I'll try yet, because there are so many suggestions! I really like the giraffe story, though... :-)
Regarding how much time each of has left... when I asked the hardest question of my onc, "how much time?", she never gave me a stock answer, rather, she said that there have been so many advances that we are working on treating this as a chronic illness, and there's no way to tell how long anyone might have. For all the bitching I do about her (more on that later), that was the one thing I thank her for. Hearing "5 years" has got to be scary because there will always be a date looming in the back of your mind. At first, I was sure I wouldn't make it through the first Christmas, then though the next scan, and then, well, I guess I went into 6-month mode, but with the idea that I had 12 years. My psychiatrist (I also suffer from clinical depression and anxiety), told me about one of her patients who was 12 years out from Stage IV diagnosis. First thought? I'm only 44, 12 years is NOT enough. But maybe I can use that as my temporary expiry date for now so I can move past 6 months. Hmmm.... that's an interesting thought... I'll have to think more about that today and discuss with my husband.
Just want to take a minute here and give major props to my husband. He is the most wonderful, supportive person in my life, and there is no way I would have made it this far without him. He lifts me up when he can, holds my hand and strokes my hair when he can't. He does more research than I do and always knows new questions to ask my onc when he comes to my appointments. He takes over everything in the household when I just need to lay in bed, feeling sorry for myself. Amazing husband, even better father, and just an exceptional man. I'm not sure I ever told his mom that, but I bet I could move her to tears if I did... and then we'd laugh... :-)
Okay, I'm gonna stop now since I have to go to work for a few hours (on a Sunday? I know!) But then I'm gonna come home, pop a beer and sit outside with my hunnybunny (he loves when I call him that) and enjoy the beautiful summer day. I hope all you ladies are having a good day yourselves...
- Rena
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One of the best things anyone said to me was "You are you and you are not a statistic." I hold on to that. XO
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Txmom - well said, My husband says: "As Mark Twain said, there are lies, damn lies, and statistics. And don't believe the statistics because they lie." And you're right - you are you, you're not a statistic!
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Rena, love that your husband is so wonderful. Keep on telling him that & hold on tight as there aren't many good ones out there! I don't have a husband so I've leaned heavily on family & friends since diagnosis & actually stopped by to say thank you to a dear friend who helped me through Christmas in my first week of chemo. Love is a wonderful thing. Both giving it & getting it.
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Hello All,
Caryn, thank you for this thread. I am still well enough (although facing a progression) to be able to fight the overwhelming cancer talk in my head with the joys in my life. Yesterday I took my autistic son and his friend (both adults) to Aladdin on Broadway. It's their favorite. I enjoyed the show, but I enjoyed watching them as well. They grinned through the whole show, danced in their seats, and when the show was over they jumped up so quickly for a standing ovation - it was awesome. So glad I was there with them! I appreciate every day I have with my children, they are 18 and 23. I have cancer, yes, but I've lived long enough to see my children to adulthood, so many young women succumb when their children are little, that breaks my heart.
Keep the pictures, stories coming, I really enjoy this thread. Seize the day
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Hi Kim,
Awesome story about seeing Aladdin! I grew up in the Bronx with parents who loved Broadway musicals and I dearly miss that. Whenever I visit I try to see a show and San Francisco does get good touring productions (recently saw Book of Mormon).
Stage IV presents challenges for all of us, ranging from emotional to debilitating in every sense of the word, and everything in between. The sad truth is that most of us will not survive this disease in the long run but, while we can, why not live to the fullest ?
Yes, I agree that it is most difficult to see women with young families dealing with MBC. Those are the times when I wish I had a magic wand or something, just something...0 -
Recently had an experience that in the past would have slightly upset me. Was at Dunkin Donuts to get a coffee coolata and the 20 something clerk automatically gave me the 10% senior discount without asking me. When I thought about it I realized that I was glad to have reached an age that kids consider me a senior. While the older clerks at port authority bus terminal always ask me for ID when I pick up more senior half price passes for the bus. I used to brag about being asked for ID when I was 30 in bright sunlight at the navy pier in Chicago. And life goes on in spite of everything else.
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LOL NYCchutzpah! I'm still waiting to get that discount. I hope I make it. I'll just have to make sure I do. How old do you have to be? I'm 58.
We had a sort of a nice day with my great niece and nephew. She's 7. He's 3. Taken one at a time, they can each be delightful (or not, lol) but put them together and it's exhausting. However, we only get them once a week, and really only a little over half a day because the 3 year old refuses to take a nap for us. They aren't bad children. They can be quite lovely. One at a time. LOL So I played superheroes with the 3 year old and sat with the 7 year old while she crafted. Then in the afternoon, mom took the girl and I was able to devote myself to full time super heroes. I am so out of shape that my calves hurt, just from running around INSIDE the house playing Iron Man and transformers. Life does not end with a stage IV diagnosis.
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wonderful imagery Dune! I'm sure you made an awesome superhero!
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Rena,
Thanks for posting. I hope no one on these boards ever feels that they need to stay quiet if they're doing well. Particularly newbies need to hear that there are a range of outcomes from this disease. A friend of mine in my MBC support group has been metastatic for 19 years, others have so far lived 15 and 8 years! And there were significantly less treatment options 19 years ago. After being initially diagnosed with brain, lung, bone, eye and breast tumors, I thought the furthest out I could plan was two years. Now I am a year and four months out and close to NED. Things can change for the worse rapidly but I don't worry about it. Best to live in the present, not the past or the future. I sold my five-year-remaining term life insurance to a company willing to pay me 65 cents on the dollar today for the chance to make a dollar if I die before 2020. Can't use the money if I'm dead anyway.
Hugs, Susan
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Susan- that is awesome news! I remember when you posted like a year or so ago. And you're close to NED! That makes my day!!!! Congratulations!
Dune - I want superhero video!
I got offered the senior citizen discount too a while back, and first was annoyed, then was like "I'm saving money!"
Need to go back and catch up with everyone.....
Hugs to all,
Terre
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