by Yep, sorry, my apologies, with a diagnosis of metastasis four months ago, I didn’t beat cancer.
Every one said, “You are going to beat it,” some said, “If anyone can, you can!!” They cheered me on as I endured one treatment after another and I kept fighting “like a girl.” I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.
Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one endpoint — “beating cancer.” Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer.” Except for one open book exam, I have hardly failed at something in life. So why would I fail at this!
However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.
Broken and beaten, I felt like a failure as if I let down everyone who thought I would “knock the shit out of cancer.” I was no longer the example of how stage 3 can be a success story and inspiration. As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.
Statistics indicate that 30 percent of those are diagnosed with early-stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.
The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer,” the terms preferred by metastatic community since we ultimately end up not surviving the disease.
When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.
Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometimes I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.
Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.
I often wondered what people think when they look at me, and if and how sorry they feel for me. I imagine something to the effect of…“Oh this poor young woman with young children who has this illness that has no cure.”
Me and my metastatic cancer.
I remembered when I was newly diagnosed. The word “metastasis” used to send chills up my spine. I used to dread my Facebook feed on Mondays, which are #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.
One of my stage 4 friends has lived with bone metastasis for 11 years. She gave me hope. But I still would at times try and block her out of my mind for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.
I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep, and all the medications and treatments. I did all possible to lower the chance of cancer taking root within me again.
But as time went on, I also worked hard on accepting what having cancer meant. It meant accepting a life that you have no control over…a life that transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancer kick each day in the butt, and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis) happens, I will be okay.” I celebrated every clean scan and a good oncologist visit, but the fear of metastasis lingered.
And then it happened. I got another, “I am so sorry” call from my doctor, and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer. I was no longer a “success story”.
During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.
It said,
“Until I “met” you, I could not think of stage 4.
I’d panic, hyperventilate
Start to decompensate.
Then I met you.
You are showing me, with grace, passion and humor how this can be done.
You are something of a role model to me.
Doing this stage 4 before I do, if I do.
I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.
If I ever get metastasis, I will have someone to emulate…and I will think of you the whole time.
Forgive me if this bugs you or hurts you. I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”
And then I realized I really don’t need to “beat cancer.” I have to however beat life at its game, one day at a time.
I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life, and showing others how to reconcile with stage 4 breast cancer.
I had a Stage 2 diagnosis, a lumpectomy, 28 radiation treatments. I opted out of the “anti hormone” pills. I am 74, take a lot of other meds for other things, and didn’t want any more side effects. That was in January 2015. I have yet to go in for my first diagnostic mammogram, although I have an appointment for one on Tuesday. If I get an “I’m so sorry” from my doctor again, I have no idea what I’ll do. I am not a “fight it” sort of person. I know the road to acceptance is a bumpy one. As a younger person, I know it must have been even bumpier for you. I am so sorry if people stayed away from you, almost as though mets were catching, or acceptance was the same as hopelessness. I do know, as Maya Angelou pointed out, that you are always a role model for someone, even though you may never realize. Someone is always watching you, reading your words, learning by example.
Thank you!
You made me cry and smile ~ you truly are one of my heros. Thank you for being amazing you every single day.
Thank you!
I am also living with Stage IV and kicking the heck out of life! Thank you for sharing your story!
Thank you for speaking from your heart as always. Please know you are still helping so many of us. Just being yourself and being human in the face of a trial helps. You know, if some early stage breast cancer patients are avoiding you, it may be from feeling guilty that they are not stage four, kind of like a survivor’s guilt. I am a stage 1 breast cancer patient and I felt a survivors guilt around a friend who was stage four colon cancer. It was nothing he ever said or did, but all in my head. I was afraid he resented me for having an earlier stage cancer than he did. I had to force myself past it to be able to keep the friendship. I’m so glad I did. We can still help each other. We are both physicians and are quite aware of reality of our situations.
You are a champion. I am praying for you and your family for God’s blessings and for the peace that passes all understanding.
I just had a double mastectomy and chemo therapy this past year. Of course I’m scared if I don’t take all of the crappy meds that make me feel horrible for 5 years that I’ll become a mets girl. Do I risk it and feel good and live life as I should or be sick and still risk it?
I saw what my grandma went through when after her mastectomy and 2 yrs later cancer ravaged her body. So much pain and I couldn’t help her. I loved her so much and it just broke my heart to see her in so much pain. But she always managed to smile and have kind words for everyone around her. An angel she was.
Your story made me cry. I’m just so so sorry this is happening to you. I can’t even put it into words how much my heart hurts for you. No one should ever have to go through the BS of any type of cancer let alone mets.
Someday there will be a cancer cure but sadly not soon enough.
Much love to you.
Someone I can relate to. You’re in the same situation as I. ????
I’m sorry. You are amazing.
You replied to my complaining @ side affects…said you had severe side affects too. I want to thank you so much for writing me back. I was a nurse for 22 plus years n can no longer work. Then I saw this today @ you in mets now. I’m so sorry!!!! That really, really sucks!!! I don’t always buy all that pink ribbon, rah, rah stuff!!! Keep writing.
Thank you Connie. Xxx
You really inspired me with your testimony. I too have the same fear, but I always remember God never put more on us than we can handle. I have my story on http://www.pinkslayer.org if you get a moment please visit . I am also here if you want to talk.
Its 3 am and I just stumbled upon your blog. I have bone/ lung mets 17 months. I was a wreck this week being sick from a virus. My coping skills go out the window. Everything you wrote about trying to save your life or thrive is what I have felt . Thank you so much for your gift of writing.
Uzma, you are an amazing warrior. I beg to differ. I believe you did beat cancer. Let me explain.
Your left breast went rogue, as did mine. I was stage 3. I had a lumpectomy and lymphnodes removed.
The minute you had that procedure done and you began to make others aware of cancer you became a survivor.
I say this because so many people die quietly and we don’t understand it. You and I made an active choice to enlighten others. Whether it’s 1 or 100 people.
I say, you did beat cancer, you didn’t let it keep you down. To hell with what people perceive a survivor to be. I bet those babies of yours and your family see you as a survivor, I know I do. I hope on that last day, whenever it may be, that you are recognized for the efforts you have put forth. I hope me and others like me help your people to realize what good you did in the world. That they see you are more of a survivor than some folks that live to a ripe old age and accomplish nothing. Keep kicking butt, whether it be cancer, life or nae sayers, for a moment or millennium.
I wrote a long message and it was lost while I looked up my wordpress URL, which is not up to date in any sense of the word. Its too late to recreate. Suffice to say, welcome to the club no one wants to join, I’m following your blog now, hope to see you in the closed FB pages for us metastatic bc types. I shared your blog and asked friends to read…they probably tired of my efforts to open their minds and see it as Gail on her soapbox again, but they really should read your article closely, for clues about me! Well done and be well, Gail in Toronto Canada
Thank you for sharing. As a physician, I have started my journey of belonging to a group no one wants to join. I recently had a total hysterectomy due to uterine cancer. I am frightened but optimistic. Pathology report is not back yet. I have moments of denial, then back to reality. I am not sure what my future holds, but I hope to have the courage and grace you have. Life is a journey with no guarantees. The only constant is change, we have so little control of events in our life. We do have control of our attitude and how we choose to live our lives. I want so much to give my life meaning. I want to leave this world giving my best to everyone who cross may path.
I was stage 2 with chemo and radiation. I am unable to take any of the post meds because it was literally crippling me and I was unable to finish chemo because I broke out in a severe rash, among other horrible side effects. I had the same positive, fighting mentality going into treatment and I have since changed my diet, as well. I have always been an athlete, but now I work out with a vengeance. I am only a year and 1/2 out of treatment, so I do not know what the future holds. This blog that you wrote caught my eye through a former student/athlete of mine who posted it on Facebook. She is now an Oncologist! I hope that I never have to make that same apology for “not beating cancer”, but if I do, like you it will not be for lack of trying. I think it’s safe to say that the majority of us who were forced to join this club try our best to survive it. I do know that I will not subject myself to chemo, radiation, and cancer drugs again. This life we live is too valuable to finish it off in constant, unbearable pain. I know that many would be surprised to hear me say that considering my positive attitude about the entire ordeal. Regardless of how my journey ends, I will always have the will to live and love. In the end, that is what matters. The fact that someone else out there, a doctor non-the-less, has the same mentality that I would have in the same situation, somehow makes my thoughts about facing this disease again more acceptable. I pray that you have peace in your journey, knowing that you gave your best effort. Thank you for sharing this.
Getting a diagnosis of stage 4 triple negative Breast cancer when I thought I did everything “right'” was shocking to both me and my doctor’s. Having people ask me how I didn’t know as if I did something wrong was annoying as well as hearing “you can beat this,” but I took this as an opportunity to educate. And as you pint out acceptance is the hardest thing. I do my best when I don’t think about it even though I live my life planning around treatments, scans and searching for promising trials. My emotions fluctuate between profound sadness to joy and no I don’t believe I need an antidepressant as many have suggested because I think it is absolutely normal to have fluctuating emotions when given such a diagnosis. Sometimes I still like to think ill be in the one percent that is spontaneously cured or at least has NED. Other times I wonder how much time I have left and if I should just stop treatment with all its miserable side effects but then remember the side effects of cancer are pretty miserable too. My guilt lies in the cost of treatments and wondering if as just one person I deserve to use all these resources. I justify this thinking I am benefiting the woman who will come after me by signing up for trials. I am benefiting science but until then I will just live my life the best I can. My husband said to me once . ” I thoufht cancer would change you. You know make you a better person, and you would see what’s important.” My answer to that beside a very well known expletive was ” Ehy hasn’t my having cancer changed you into a better person? ” the truth is cancer has changed me. I will never be the same person after this diagnosis. I don’t necessarily think it has decreased my flaws. In fact maybe it has magnified them because when I don’t feel good lets face it – I’m more irritable and more short-tempered, No cancer hasn’t made me Mother friggin Theresa. Cancer complicates things. It has made me more sensitive to others sufferings. It’s made me more aware of my imminent death and trying to figure out what’s important to me. It has made me more aware of the overwhelming kindness of so many other people and the love and kindness mostly trumps what I prefer not to see in other people. Because there are also people that have disappointed me but there will always be disappointment. So every day I try to be a ” better ” person – cancer or not. And sometimes I will fail miserably.
I always hated when my father would say to me when I was little “death is a part of life” when I would see a dead animal on the side of the road. And as my husband says someday every one of us will die. (Who knows I could get hit by a car tomorrow) I know this but living your life with this diagnosis hanging ominously over my head, well, it’s diffferent than knowing someday we will all die. The best way I heard it explained is that it is like living in two worlds.
While I am still fearful of death and would like to find something comforting to believe about it, my greatest fear is to not be there for those I will leave behind – mainly my children. I have so much more to give as a nurse, a woman, a mother. and so I go on trying to believe I could be the one percent because I am not ready.
Thank you for your article.
I have stage 4 breast cancer that has metastasized into my bones I had a double mastectomy with reconstruction had implant surgery I am on hormone therapy for now in 3 months I will have a pet scan to see if has spread somewhere else I have 4 children and 2 grandkids that I am fighting for and I pray for each and every one of you that are going through the same thing as I it’s hard to even imagine no cure but God is in control
You’re not a poor woman who has to be pitied. I think you’re a very brave and courageous woman. Indeed, it must’ve taken a lot of courage to face and accept the fact that you’ve got mets. I’m a Histopathologist and I see cancer for what it really is, on a daily basis, the ugly cells creeping their way everywhere. You don’t have to apologise for not beating cancer. You should rejoice in the fact that Allah gave you so much courage to face this yourself, and to be a symbol of inspiration to so many women out there who get strength from you.
I’ve been a ‘thriver’ for 5 years… It’s taken a few years to wrap my head around it. I’ve been living life far more fully & has been- in a twisted way- enriched by knowing my life has been shortened. I’ve maintained my practice as a psychologist part time, & spend the rest of my life taking care of myself. Please contact me directly to debrief, support, & make sense of our future!
Love this. I was just the same….”kicking cancers ass to the curb” was my motto when I was stage 2. I failed. Now I’m stage 4, TNBC. It’s all about, yup I’ll die but until I do, I’m going to LIVE.
We may have had our moment over a silly Facebook squabble but know this girl, you are inspiring so many women. We all learn to survive after a Breast cancer diagnose but many of us forget to thrive… You my friend are reminding and inspiring us all to thrive because tomorrow is not promised for any of us…! Keep blogging, keep smiling and keep thriving!! Much love x
Uzma, thank you for again writing your way towards a more vivid humanity than the world might want to give you.
The separation and the resulting shame that you describe is real and the way shame works is by making you feel like you don’t belong to the groups you used to belong to. That somehow you are less human by reason of having failed to comply with the expectations of the group. Which in this instance asks that you remain whole and unaware of death, and that you not remind anyone else of their own mortality.
And to think that if you had done that, we would be so much poorer in our humanity. Thank you for expanding the definition of what it means to be alive, sentient and intensely human.
To me you beat life at its game every day that you help the rest of us, sick and not yet sick alike, to examine ourselves and find ways to be better. ?? Thank you.
Reblogged this on ihatebreastcancer and commented:
Uzmay reflects on being a competitive person confronting a disease that cares nothing about personal attributes, her own evolving attitude toward a #metastatic breast cancer diagnosis and finally the realization that her voice and story can have a profound effect on others.
Loving you! Stage IV, grade 3, mets to liver, lungs and lymph nodes all, April 2013, de novo. Surpassed the prognosis already! Some days REEEEAAALLLLY suck, but, most days are awesome. I BEAT the heck out of every single day and love my little kids and enjoy planning life-even 20 years in the future. I know there’s no way I’ll be here to see them graduate highs school, heck not even middle school probably, but, I am seeing them graduate every day and I’ve made sure each day has possessed at least some small life lesson I want them to remember when i am gone. I write them letters and cards for birthdays and hard days and graduations and even when they have their own babies. I have many special ways of commeorating memories we make together now-we collect beach sand or ocean water or tiny leaves or anything that may encompass a memory jog for them and seal it in a tiny glass jar with an adorable little cork, then label them and hide them away in our keeping places. One day, they’ll pull them out and remember all the fun and awesome days we had together. I AM CRUSHING the damage the stupid disease COULD do to me. But, I am realistic. I am an RN (no longer working), and I know all too well the truth of this diagnosis and the end run. But, for now, just for today, we are going to LOVE this day, even if I’m vomiting and crying at some point, because today is all I can count on with them and they’re counting on me to be present in today and teach them to live and concur and be a force to be reconned with in any circumstances they encounter. Love to you!! Thank you. SR
As a 2x breast cancer survivor and mother to a breast cancer survivor, I hope to remember your words when the time comes for me.
God bless you. I lost my sister on May 23 to breast cancer that metasticized and spread to her brain, spine, liver and lungs. I was glad she went quickly so that she did not have to suffer. I pray for healing and peace for you on your final journey.
I sent the first doctor that diagnosed me with Stage I flowers, because I was so worried about him having to break such bad news. As a gynecologist, he brings life into the world, so I thought it cruel that he had to bring such pain as well. I still worry about my care team. I’ve managed to deal with my stage IV diagnosis since 2013 with a range of tricks and emotions, anger and love, music and humor, fresh air and solitude, and on and on and on. I have surrendered to myself in the end, trusting that I know I can get through this. Thanks for connecting some more dots between us. It makes each day a little easier, seeing those dots turn into the most beautiful picture ever created.
From your post, I now understand where my feelings of shame originate from- we thrivers learn how to operate differently in the world and no longer tolerate wasting time doing unnecessary thing nor tolerate folks who don’t inspire/ support us.
Wow! I posted very similar sentiments yesterday on FB (see below). Thanks for sharing. I’m also a physician with recent recurrence of colon cancer, now metastatic. Here’s to THRIVING!
Yesterday at 8:12am ·
“Good morning and Happy Independence Day weekend! In the spirit of America’s birthday, I would like to talk some about pioneering spirit, pulling oneself up by the bootstraps, self-reliance and control of our own destinies. I opened up this dialogue with the desire of sharing and talking about things that most people choose not to discuss. I knew going into it that I was opening myself up to criticism and hurtful statements. That’s okay. I’m thick skinned literally and figuratively and am willing to take that chance in order to further discussion and better understand thought processes that are foreign to me. But this can go both ways, and what I have to say might sting some of you a little bit too. Sorry. Please know it isn’t done with thought of malice, but rather please consider a new way to think about things. I know that things said to me are certainly not intended to be hurtful and I forgive whoever might have said them. I just ask that you stop to think about what you are really saying to someone when you tell them not to give up and to keep up the fight.
Are you telling me I’m weak because I’m sick? Are you telling me I’m not a good fighter if I die? I hate to remind you all of this, but so far we are batting 100% on this dying thing. I find it hard to fathom that the billions who have died before me would have been immortal if only they had believed more, fought harder and never given up. Anybody who thinks that I’ve just been bobbing along in the stream of life without steering my boat around doesn’t know me at all. I have gone from being a high school dropout, single mom to a contributing member of society doing work that benefits others. That didn’t happen because I have the personality that “gives up”. Death happens, whether we refuse to acknowledge our powerlessness over it or not. Telling someone not to give up or to keep fighting only insinuates that it’s their fault somehow that the inevitable is happening. Don’t mistake my being at peace with my not having desire for more life. You would be very, very wrong! I would love nothing more than to live another 30+ years and watch my grandchildren grow up, continue contributing to the greater good of this earth. I’m smart enough to know how to pick my fights. I can win the fight about whether or not I go to school, or choose a job I love, or where I’ll live, and how I’ll treat people. Death always wins. I’m not in control of that and can’t change it. I can only choose to be at peace with that. Only a fool would mistake that for giving up.”
Wow, this is so well written! Kudos to you for putting it out there, so many of us feel exactly like this. I don’t call myself a survivor, I am a fighter. Will go to my grave fighting, as I know you will also.
Thank you for articulating what I could never say. From one Stage IV thriver to another, thank you. I am 8 years out a Stage IV diagnosis and live with the fact that with every scan this could be the third time around. Again I thank you for your honesty. And I wish you all the best.
What a journey you have been on. No one but God knows our expiration date. Our family has been hit hard with ovarian cancer. 2003 at age 55 my sister Debby was stage 4 with a poo bag. She is well to day and a miracle and no recurr and bag reversed. In 2012 me at 55 I was stage 3. Surgery, Chemo and then tested + for the BRCA1 gene mutation. I had a PBM, breast off for preventive. Sister Debby thought I was a panic and 3 months later she was diagnosed with stage 2B TN. She is recovering. Also a cousin with ovarian in 2012 and most recent my 32 year old niece. You can follow her on FB ‘team julie” her pathology was stage 4. This gene waits for no one
Thank you for writing this. I have been surrounded by the BC beast my entire life. Maternal grandmother… Dying slowly in a nursing home from BC Only maternal aunt dying the same fate. Dearest mother.. Kicking BC ‘ass .. Only for the beast to return and take her as well twenty years later.. As an oncology nurse .. I too got the dreaded dx… For me Stge III c with a poor prognosis and lots of sad faces….. It is now. 11 years later, and I am still blessedly well and involved in BC research, particularly genomic . We are closing in on metastic BC disease as a chronic manageable disease. It is my fervent hope and prayer that all that are suffering from bc mets receive the news that they can expect to not die from this devastating disease.
Your strength has lead you to a place most of us will not find in this lifetime. Thank you for inspiring us with your courage and positivity.
“I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.”
So sorry to hear of your news Uzma, but by the same token I am glad to hear how you are now approaching your illness and helping to show others that there are answers and options. I’m a leukemia survivor myself, well, a survivor in training really, since it has barely been a year since I got the all-clear. Thanks mainly to my wife and her unerring search for the truth, I rejected the chemo option and went down the natural route – trusting that Mother nature would provide the solution.
It appears that she did and as my way of ‘giving back’ to the World, I started up http://www.vibe55.com – a group for survivors to help them fight off the fear of cancer’s return and take back control of their lives. It’s early days yet, but I want to get the message out that there are alternatives to ‘Big Pharma’, and ‘Big Agriculture’ and the best way to look after yourself is to avoid processed foods and be aware of the many toxins we are exposed to in our everyday lives.
There is so much that I want to say, that I cannot do so in this small space, nor with my clumsy words, but suffice to say you are not alone, and nor should anyone ever be when faced with something as catastrophic as cancer.
Best of luck in your endeavors and thank you for being a champion of the cause – your cause, because know that in the grand scheme of things, your voice is being heard.
Thank you for this story and your realistic and honest expression! Your words resonate with me as I move from chemo and double mastectomy with reconstruction and onward to whatever is next =)
Thank you for your writing. I have fallen out of compliance w/ tmox and zoladex (and perhaps into a vat of denial) but I am getting back on board right now.
I think that, just as noncancer people are afraid of survivors, NEDSters can be afraid of thrivers. I just realized that my horror of mets is so great that I do shy away from those who have it, and I am ashamed. I will correct my course immediately.
Tears run down my face as I just read your story. My brother was told , that he was terminal , but he tried everything and fought so hard. He never wanted anyone to think he did not fight cancer to his last dying day. He is my hero and so are you. You really have NO idea. What a beautiful, honest and positive role model you are to everyone that read this and to everyone that knows you and cares for you. You, my dearest one are in my heart and prayers. I think that you are so beautiful and please know that you are in my prayers from this day forward. May God bless you and your family and loved ones. Now……..I have another hero. ???????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????
It did send me chills knowing all this and yes I did lost hope when I found out too about my sister . But honestly when I see u and does gives me strength and courage to talk my sister and tell her that every thing will be ok with a false hope but u never know miracles do happen in this world so let’s pray once again for everyone who is fighting this Ameen
i am also stage 4 tnbc. its very hard and i have cried a lot, but i do know that god has this, thank u for your story, some people just dont understand wht this does to u, this is my third time with breast cancer, but 17 months ago i heard u got stage 4. i was in shockkkkk, did the chemo and got so sickkkkkkk, now its back and im on the chemo pill, i pray for us alllllll
Thank you for this brave commentary on living with uncertainty. My husband lived with Stage IV cancer in his early 30’s and we were on an emotional roller coaster for 3 years before he left his physical body here on earth. I, too, felt like the survivors were suddenly avoiding me because I represented what “could be”. When you think about it, we all know someone living with cancer, who has beat cancer and who has succumbed to cancer. It’s just a part of at this point…but no one is talking about it, so we are all surprised and don’t know what to do when we hear the news. Bravo for being willing to share your story so that we can all learn how to listen and love better. Cancer or no, we all need to do these two critical things…listen and love well!
I was just diagnosed with metastatic breast cancer in my bones, 5 years after my initial diagnosis. Thank you for putting my feelings right now into words. I keep asking myself if I could have done some things differently. Should I have eaten less meat and more plant-based foods? Should I have lost weight or exercised? What should I have done differently? I guess I am still in the grieving stage of my diagnosis. Reading your blog does make me feel better because I know that other people have the same feelings I am experiencing. Thank you, again.
Lifers are my true heroes. Many of us aren’t horrified or scared by your stories.. we’re inspired and hopeful.we know that metastatic cancer is bad, but but it is not the end. What I want, as a Stage 2B-er, is more research and money for Lifers. I support you 1000 percent.. even if don’t express it correctly.
Umma, your writing is always so beautiful and relatable. Before mets and now, your writing has always helped me understand better the emotional toll of breast cancer.
I’m sorry to hear that you have experienced isolation after your stage 4 diagnosis. Even though we have never met, I want you to know that while I am afraid of a stage 4 diagnosis for myself, I am not afraid to call you my “virtual” friend.
Thank you for sharing your beautiful voice.
Thank you for sharing!!! You are a blessing !! Several years ago, the doctor kept telling us mom was ok, nothing was wrong and so forth ( she wouldn’t go to another doctor). I know she knew something was wrong. She fell and even when she could not walk, she was told she will be fine. Through a series of events we got her to another town and hospital. She was first diagnosed with a ruptured disc. She was soon diagnosed with stage 4 cancer that had metastaside thoughtout her whole body (brain, bone, back, breast, and so forth). She wanted to come home. She lived 6 weeks after her diagnosis. I appreciate you sharing.
Thank you for your bravery. Thank you for telling your story. You give hope to others when you can be an example.
Hey! Have you tried Ibrance? Its for mBC. Are you based in the USA? Thx
Hello you give me such strengh i go today for my 2 of the required 5 year mammogram’s and although i had DCIS i was treated with 2 operations and 20 radiotherapy shots i am always mindful of every ache and pain but try and stay positive.My 83year old mum goes into theatre today for Uterine Cancer total Hystorectopy i am bricking it, but having read your account with Living with this bugger i am a little bit optomisti, thank you for sharing with us a very fifficult time lots of love and god bless you, xxxxx
Dear, you are fulfilling your “mission” with grace and honor. Each of us is placed in the earth by our God with a mission, purpose, and the equipment to bring that about. Until that last breathe comes, please continue to impact people with your courage and words. Happy journey!
You rock. End of story.
Just lost my mom last week to Stage IV breast cancer metastasized to bones and liver. She always said she felt so isolated because the people who understood her kept dying. She fought cancer for 23 years, and was one tough gal.
The journey with cancer is such a tough one, and it seems a bit silly for anyone (besides your care team) to tell you what you should or shouldn’t do with your time/resources/treatments/emotions. I know loved ones are well-meaning and just hate feeling helpless-I’ve been guilty a few times myself of that exact pitfall. But it seems to me that lifers really need an honorary medical degree for all the things they have to learn about in this journey; they have definitely been making very careful, thoughtful decisions all along the way.
I ‘m a psychotherapist who has walked with literally hundreds of people facing metastatic cancer over the past 40+ years. For fifteen years I had the immense privilege of facilitating a weekly therapy group for women.
Through all of this, I have learned so much!
1. We are oft wounded by the ‘tyranny of positive thinking’ and led to believe if we steadfastly maintain a positive attitude, positive images, positive quotes we will somehow have control over how our bodiy’s cells will behave. This is the source of distress on countless levels when one recognizes how limited our’ realm of influence’ may be. When recurrane happens there’s an initial tendency for patient’s to self-doubt…’what didn’t I do well enough?’ What about those times when I felt my anger or fear’….
2. A lot of friends know what to do/say when an initial diagnosis is given but are baffled as to how to remain meaningfully present whe recurrane or metastis becomes part of the picture. Not the same cheerleading to do, books to offer, etc…. but MORE THAN EVER it is at this time when one needs a loving compassionate witness, someone who will walk along in the maze of ambiguity.
3. In fact, people do sometimes live well and for a long time with metastatic illness. This cannot happen in isolation and I sincerely hope that, through my work and through connecting people with others navigate a similar path, people find models, mentors, compassionate witnesses and some helpful tools.
4. Unfortunately, it is at this time that patients have to become teachers to those around them through talking very openly, through really bringing metastatic cancer out into the daylight and most of all telling them that LOVING HUMAN PRESENCE, COURAGEOUS CONVERSATIONS AND AUTHENTICITY ARE FAR MORE POWERFUL THAN PROMOTING THE NOTION OF SIMPLISTIC POSITIVE THINKING.
5. We humans, and of course that includes me, have such intolerance for ambiguity…not knowing what will happen. Many years ago a patient with stage 4 cancer ‘reframed it for me’ when she said ” remember, not knowing means it’s also possible for good things to happen”!
She lived with an immense ability to gulp down the goodness of the present moment!