Life does not end with a stage IV diagnosis (really!)
Comments
-
No Karyn, I don't think you did. True none of us know what our experiences will be but having others give freely of what they have gone through and the hope they have is so helpful to new women facing the shock and horror bomb that denotes over your head. Maybe more so to that small group of us that get that bomb dropped and we are straight into stage 4. Than was my experience and finding the stories of women who had built up strong and purposeful lives meant more to me that any reassurance from my doc.
When NED stops or we get progression it is something to deal with that reminds us that even though we might have had 2/3/4 years of great response this thing respects nothing and we control none of it. At almost no stage of the last 6 years has cancer ever been something that I get to make a choice over. Didn't choose to get it in the first place,did everything right, didn't choose to need a mast, infected lymph nodes, nope, Finally mets to spine, definitely didn't tick that box. Nor did I choose to have a great response to tamox. And so on through the last 6 years. Good things and not so good, alright plain bad things, I didn't get any choice, nothing I did made those suckers grow or die. Nor could I influence the effect of the treatments,they worked or they didn't.
For a long time I didn't post here cos I was doing so well and I didn't want to seem to be gloating in the face of women dealing with so much that I had no understanding of. Then I slowly realised that another group of women were asking questions about sheer survival when they had been first dx. Should they start the dreadful tamox cos of the horror stories they had heard and I realised my experience did have a place, I could reassure that many women didn't have any horror stories and that life was as normal as it gets on tamox. As so it goes on. The stories here are positive stories of women living strong and purposeful lives with stage 4 bc. It is a snapshot in time for all of us, so already some have moved from that into more dangerous territory and that is hard to look back and know that time is over or maybe it was never a place you lived, but life is lived in the presence and that is what we must do, and sometimes that is bloody hard.
Also a little jealousy creeps in, that happens in any aspect of life so not just with this. Why didn't God add those few extra inches to my legs so I could be leggy blonde, nope 5 foot was enough apparently.Here it is the why couldn't I have had long stable, why didn't those AIs work for me, why am I in the aggressive group. No bloody answers to those very fair questions. Like it is said here: It is what it is. Damn and double damn for some of us and Yay for others. It is what it is. Deal with it.
Nearly finished my book Caryn, sorry to go off topic a bit. I love reading the great stories, I have great stories, but I also know how precious that time can be. What I hear you saying is grab it , live it, love it and as you so clearly say, don't let cancer steal one minute more of your life than it has to.
Newbies and even those if us deep in the mire of scans and new treatments need to hear it and hold it tight in our thoughts.
Moira
0 -
Dear Caryn,
So awesomely put, as always! Thank you so much. Here's to many more years with joy & happiness to you & us all
hugs & love
Ebru
0 -
Thanks for this post, Caryn. Two thumbs 'way up.
Tina
0 -
One of the hardest things about stage IV is the wide range of experiences. I sometimes feel bad posting good news because I know others are struggling. And on the other side, I have a hard time talking about struggles because I don't want to "bring others down." But I have learned to try and put that all aside. Because I want a place where people feel comfortable saying what they need to say without worrying about offending someone. Others understand and support me whether I am up or down and I try to do the same for them. We can't take posts personally. I don't believe anyone intentionally posts to hurt someone else.
0 -
Caryn,
Thanks for your great post. I believe your intention was to give some encouragement to those newly dx'd as stage IV, and reading it and the responses of others did just that. We all remember the terror we felt when we first heard those words ... stage IV. I was already planning my funeral in the first weeks and months and was unable to envision any good life in the future. I am one of the fortunate ones that had only one met to the bone and am doing well on an AI and Zometa. But, I feel just what Moira expressed, that I'm reluctant to post because so many others are having a difficulties that I cannot (at present time) relate to. I was stage IV from the start, so I have never had chemo or any of the horrible se's, although my time will come, I'm sure. Right now, I'm truly grateful for all the blessings I have, and am enjoying each and every day.
0 -
Dear All,
I dx for stage 4 in Feb,14. I was very scared on dx but now I am coming back to routine with my treatment I.e. Harmone Therapy. Got inspired by the comment from the fellow survivor of MBC
0 -
kayrnic, you say it well: stage iv ladies have a wide range of experiences.
When I was a 'newbie' and first found this site, It helped me tremendously to read the posts of other women who moved forward each day carrying on with everyday life in the face of their diagnosis. It was the format of this site; these aren't 'articles' or 'stories'. It is everyday postings of others going through what I am going through.
I hope that anyone who is experiencing really good times doesn't hold back and shares because it really means a lot and is very theraputic and inspiring to read. It often gives me the momentum to carry on. I remember a couple of years ago a post of one of us asking 'I don't know if I should buy a new winter coat.' There were so many encouraging posts as well as other women saying that they've not only bought new coats but new cars and new houses, ect. I thought, dang, these gals are FIERCE. It encouraged me to rise above the what-ifs and get to keeping on.
I also hope that no one ever ever feels like they are bringing anyone down when posting about struggles. That, too, is what we are all here for, and imo, that is keeping it real. I feel like those of you sharing the difficulties are COURAGEOUS and how you cope or don't cope with what you are dealing with is just as important to hear as when it is going well.
0 -
Caryn,
Thank you a wonderful post. As you said all of us living with stage 4 have different experiences. I try to explain to folks that the dx does not rule my day, but is never far from my thoughts. I am 6 months out, and the black Irish in my wonders when the other foot will fall so to speak, but NED so far. I am working, raising my children, spending great times with friends and planning some vacations. I have even put my little toe into the dating world. I try to live my life and most days stay in the moment. But it is also OK for us to have days when everything just gets us down. The trick for me is to sit with the moment or moments and then get up and move forward. I do not like the other option! There are so many women on this thread who have given me hope and support, thank you.
Be well
Nel
0 -
Thank you all for your kind responses and support. I too sometimes felt bad when I post about my life with stage IV but I realize that my experience is just as valid as anyone else's. Yes, there are many variations on stage IV and everyone, especially the newly dx'ed, needs to be aware of that. Enjoy whatever you can, everyday, for you may find your days filled with things you never expected.
Caryn
0 -
Hello all my name is Jenn, I live on Long Island and I am 45yrs old and was diagnosed with Stage IV(spread to liver) in 2012. It was quite the surprise, as I am sure with most. No family history, not a drinker or smoker, no drugs......I am kind of boring!!! I am a true believer that your life is what you make of it. I look at things very differently today. I do not ever sweat the small stuff. I love life. My son and husband are what keeps me motivated every day. My suggestion would be to live every day to the fullest. Try not to see your life as half empty but as half full!!
0 -
Hi Caryn and Everybody
I think that all our stories are helpful, it is so vital that we find people that we can identify with so we don't feel so alone. This site has been invaluable for me, as I live in Singapore, and there havent been any support groups for me here and without the lovely ladies on this site I think I would have gone crazy. I too found the first year to be incredibly hard. I was diagnosed Stage 1V in October 2012 and spent most of that time in tears, depressed and so frightened I would die soon. It was like I disappeared and all that was left was the cancer diagnosis.
Well, sixteen months on I am once again living life, but at the moment I am happy to say I am living large and ensuring I get out of life what I want, especially as I am all too aware (after reading many of the amazing women's stories) of how fragile life is. Prior to the cancer diagnosis, I felt like I had achieved everything that I wanted in my life; I had my children, had my career and obtained my degrees. Now, there is so much that I want to do in my life and I will be fighting until I can no longer fight anymore. I want to be a Grandmother so badly (though my eighteen year old daughter, who wants to have a career in musical theatre assures me it wont be her), I want to see my thirteen year old graduate, I want to see blue whales and it goes on and on. I too, like Caryn am a teacher who absolutely adores what I do, each day is a pure pleasure and I really believe that my passion for my class is what keeps me positive and incredibly motivated.
I am on femara and apart from a few aches and pains I am doing fine. I have now lost 10 of the 13 kilos that I put on during chemo and I now go to the gym at least three times a week. I especially love combat classes, where I literally 'kick the shit' out of cancer; all my rage and pain goes into every kick. In three months I am moving my family back to London, becasue after seven years of living in Singapore, I decided my children need a home, stability and a support network around them to help them cope if I do lose the fight sooner than later.
I am absolutely terrified of dying, I don't want to and I am hoping for a bloody miracle, but I will live my life, laugh, cry and experience every small detail of life while I can.
A big thanks to Caryn (who has inspired me since the beginning of this new chapter in my life) and to all the rest of you amazing ladies.
Take care
Sam
0 -
I made the mistake of reading through the rest of this thread. I find it disturbing that someone who just initiated a card shower for Chickadee, when she was clearly in trouble with pneumonia and hospitalized, would post something with a title like this. "Life does not end with a stage IV diagnosis (really!)." Yep everything is coming up roses in case you had not noticed.
This being a stage IV site for metastatic breast cancer and with the misery posted daily, I am floored. Lets see just recently Family5 is doing poorly, Capriness is in hospice, SAMayoFL was told to go to hospice. Jill Thut is doing poorly. Baseballfan (Bobbi) needs a card shower and is doing poorly as is reader123. What is your motivation to have an public endorsement that it's ok you are doing great and there are some women who do live for years well? Everyone knows that and hopes they will be in that elite tiny group. Do you need to publically say that HERE in front of all these women who are NOT doing well? It is in such poor taste!! I wonder psychologically why you feel the need to post it. Then I wonder at the huge response saying "well said Caryn . Great uplifting post - way to go!" Is it just a group hug thing?
Life does eventually end with a stage IV diagnosis. Life ends period. We said goodbye to Beth (SPAM girl), Kita and others in just the short time I have been on the boards. Apparently their lives did end with a stage IV diagnosis, so your title has some exceptions. There appears to be another wave of departures on the horizon and while I hope everyone here gets a LONG reprieve and beats the odds just to kick cancer's butt, most of us won't. That is why this site exists at all, to give a forum for those trying to gather treatment options and manage side effects and allow them to live as long as possible with a terminal disease. I am definitely taking a break from the boards.
0 -
rosevalley,
I believe I made my reason for starting this thread quite clear. Additionally, I acknowledged, several times, that not everyone at stage IV is in my position. I do not need a public endorsement of anything, I am quite secure with whichever way the wind blows me. Stage IV comes in many varieties, as several have stated. I celebrate everyone's lives and victories as well as mourn the struggles and losses. There is no universal stage IV experience and I don't want those of us who are living fairly well to be silenced out of some misguided notion of respect for those who aren't. When the day comes that I decline, I will be in the front row cheering on those who are enjoying everyday and functioning well. So simply put, I started this thread so that those who are curious about stage IV or new to it can see that this is one of the many ways it can be experienced. I feel no need for myself or anyone like me to pretend our lives are any different than they are.
Caryn
PS: I am more than well aware of our losses. I don't think any of those wonderful women would begrudge those of us who are doing well even one second of it!
0 -
Rosevalley, YOU have my full support. I can't even begin to imagine how many women logged out in tears that day.
0 -
Rosevalley,
I believe this site exists for much more than "to give a forum for those trying to gather treatment options and manage side effects."
No one can or should hang crepe 24/7. If we can't share our good news, exult in our victories--large and small--and feel free to proclaim our gratitude for anything good that life may bring to us or that we may bring to life, then I wouldn't want to be a participant in this forum.
Tina
0 -
Lego and rose valley,
Although I appreciate your position, I believe this forum is a place for all stage IV women to have a voice, regardless of where we are in our disease. I don't want this to become a divisive issue but, at the risk of being a broke broken record, all varieties of stage IV exist and need to be able to post freely and be acknowledged.
Respectfully,
Caryn
0 -
I love hearing about people doing well and I cry with those who are having a difficult time. I am in both categories depending on the day.
I have been stable for long periods of time and have experienced anxiety and fear when my cancer has progressed (I am 5.5 years with mets). I am am relatively lucky in that I still work, travel, and do other things, even though I do them with more difficulty. I also know that this won't last and am reminded of that when those having a harder time post.
I am inspired by all of you - those doing well and those facing huge day to day challenges. I come to this board to share joys and hope and to share the expressions of fear and pain.
All your voices are important to me. When I first came to this forum, I was lifted by people sharing their good news, felt less alone hearing other voices of despair, frustration, anxiety and fear, and encouraged by how people were meeting the challenge of still finding something to smile about in the face of this awful disease.
Let's keep celebrating each others good moments and sharing our tears.
0 -
Thank you, Jill 49. That is exactly what I hope the stage IV forum will be.
Caryn
0 -
My last comment (because I just mostly read this forum and only contribute privately). Though I appreciate the joy I find in reading about good news scans, accomplishments, etc., there's a difference between that and rubbing someone's nose in it. It's very insensitive for those of us who are really struggling. To each his own. JMO.
Edited for clarification.
0 -
Stating what my life is like, and stating that good QOL may be possible, is not rubbing someone's nose in it, in my opinion. However, to each his own as you say. All I can suggest is if those of us who are doing well at stage IV upset those who are not, that topics which illustrate that stage IV can have a good QOL be blocked. Personally, I embrace you all, wherever you 're at. When my time comes and things are tough, I will happily celebrate those who are doing well.
Caryn
0 -
exbrnxgrl, I love to hear positive stories it gives me hope that I could be there one day. It may happen or may not but the whole point of this is to tell our stories and to be happy for the women that actually are doing great. We are all in the same boat here we should be supportive of each other here and continue with great stories. Me personally I have been on a roller coster with good news and bad news. Right know I am going through things I will have another biopsy tomorrow and I am scared but reading positive stories still gives me hope.
0 -
Stella,
Thank you and wishing you the best with your biopsy. We are, indeed,in the same boat, and should not begrudge others their joys nor spare the support for those who are struggling.
Caryn
0 -
I'm floored. Life does NOT end with a Stage IV D.I.A.G.N.O.S.I.S. It doesn't. Do we eventually die from our disease? Why yes, yes we do. But the likelihood of dropping dead as soon as we are diagnosed is slim. In between diagnosis and dying we have a lot of life left to live! Twenty years? Probably not, but we can make the most of each day we DO have left. We can go ahead and do things we might have put off.
I took the title to mean "Hey girl, take a deep breath, you just got a crappy diagnosis, but you are not going to die today." If that's not how you took it, do you have to come to the thread and voice dissent? Good grief! Don't we all have enough problems without squabbling?
0 -
"What is your motivation to have an public endorsement that it's ok you are doing great and there are some women who do live for years well? Everyone knows that and hopes they will be in that elite tiny group"
Actually, EVERYONE does NOT know that. I was diagnosed with stage IV breast cancer right out of the gate at age 36. I had no family history and breast cancer was not even on my radar in any way. Imagine my surprise when not only do I have breast cancer, but it is also terminal. My doctors literally gave me no hope. They gave me the whole "treatable but not curable" speech, but it was obvious from their mannerisms and tone of voice they felt I was not long for this earth. In a quest to find some shred of hope anywhere to keep myself going for my wonderful husband and two beautiful children who were 5 and 3 at the time I started searching the internet. You know what I found first, statistics. Those dreadful things that said that not only is the idea of me surviving for 5 years a fantasy, realistically I had 27 months or less. My little baby wouldn't even remember me! In desperation I started googling things like "longterm stage IV breast cancer survivor" or "10 year breastcancer survivor" and ended up here. This wonderful place saved my sanity. It gave me hope and reassurance that I might, I just might be able to live for 5 years - enough that my children will know me. I clung to the posts of people doing well and getting good news like a life raft in the middle of the ocean. A post like this would have (and still does) given me hope that maybe I'll have enough time to go out and make more and more memories with my children. In my opinion there is a place for EVERYONE and all of their different experiences on this board. I WANT and NEED to hear posts like this, just like I need to hear the hard experiences too. This forum has given me an idea of what to expect when the end is near, some of the horrible side effects I might expect, how to get my affairs in order, what new treatments are on the horizon, what treatments might be next for me, how to talk to my children, and how to go about trying to live life to the fullest every moment, plus SO much more. I just had my very first progression after hoping that I would be one of those "lucky" ones, now that it turns out I'm not...I certainly don't begrudge anyone on here who is doing well. There is a place for all of us and all of our myriad of different experiences here. If I had come here in the beginning looking for hope and only found the hard posts, I would not have had the hopeful last year and a half that I've had and that would have been a horrible way to live and a horrible memory of a sad mommy for my children. There is someone out there googling right now, they are looking for someone doing well with stage IV breast cancer and they need to find this thread. Just like there is someone out there googling pleural effusions, and mouth sores, and liver failure and they need to find this place too. I don't mean to offend anyone with this post, but I felt I needed to speak up. The stories of people doing well here were exactly what I needed to help me in my darkest hour (to date).
0 -
Well said Brandall. I also want to acknowledge that having been on the boards for two years.....Caryn participates in many threads.....not just the happy/upbeat ones. She offers encouragement, valuable information, and love to those in difficult situations and those not doing well. I don't think her post is selfish because it is not like she avoids the bad and only focuses on the good. I have to admit that sometimes I do avoid the bad. Some days I am not strong enough to take it. But that is my own weakness. I have never NOT seen Caryn respond to someone who is doing poorly or even near the end. She has my respect and support.
0 -
Chele, I took it to mean exactly what you did....not upon reading the topic line but after reading the post. But I respect differing opinions about it and am interested in everyone's opinions whether they agree with mine or the poster's or not. I would hardly call a difference of opinion "squabbling".
0 -
Brandall, well said and thank u I agree with everything u have to say. If it wasn't for breast cancer.org I don't know how I would have handled my journey with stage 4. The great survival stories of all women all different ages. I am 42 years old with two kids too. I never thought I would see my son graduate high school but in two months I get to be there. I just pray I get to see all the mild stones with my younger son. So thank god and thank u breast cancer.org and all the wonderful women here who are here to give great advise and listen
0 -
Most of us don't want only a negative forum. Even in the worst of times and times of loss, so many seek out positive stories. Really we want there to be some success stories out there. For newbies, why not show them the variables of this disease. It is not all negative. I think all the women here are very sensitive and supportive of each other and especially those that are struggling. I don't see this at all as rubbing anyone's nose in it. Those that are doing well certainly know it can and does change in a wink of an eye. We cry with the sisters we lose and pray or support those ladies struggling. It personally breaks my heart to read about it. Let's not create division in our group. Celebrate the good and band together and support the sadness this disease. Use your energy to make some noise about metastatic cancer and the lack of research dedicated to our mutual disease I hope this sacred place we have has tolerance for all aspects of our disease where no one is offended whether we are discussing living or dying.
Jen
0 -
Thank you to all who understood my intentions (I thought I was pretty clear in the initial and subsequent posts). I know we don't know each other in the real world and perhaps this can lead to misunderstanding online. I am a very self sufficient person who does not need much external validation to maintain self esteem. No accolades or public endorsements necessary. As my late mother often said, " I know who I am." That being said, the last thing I want is for this thread to become the start of divisiveness. For about a minute, I was tempted to delete it , but I want women in my position, or anywhere along the stage IV spectrum, to have a voice on bco. But most important of all, I want to laugh, cry, celebrate and mourn with all of you and never be afraid to do so.
Caryn
0 -
@Rosevalley. .It is good to vent and I hope you are feeling better about your situation. Around 40 yrs ago I had an IUD and was told that the chances of getting pregnant was only 3% I did get pregnant (no baby) The stats I have seen for stage IV are about 20% of surviving 5 yrs or more, so I'll take those odds. I am still alive and will do what I want and able to do with the time left to me. I like happy stories and get tired of talking about constipation, pain meds, side effects etc.
Charlotte
0
