When You Get the Good News

Call me crazy, but ever since I got the good news that my lung lesions and all of the lymph nodes in the chest and right axilla resolved I have been a little lost.  Weird, right?

The first six months of my diagnosis was a crisis flash point.  I was thrown into doctors offices, presented with tests, medical interpretations, treatment options.  It took over my life.  I made a point of telling all of my friends because I thought it would help me to accept things and move forward.  It did, but then I didn’t anticipate managing that information network.  Then there were more physicians, more options, and the crisis of severe pain from that Tamoxifen induced tumor flare.  More drama as it slowly pushed me away from my work and the consequences of having to admit my limitations and hand important work over to others.  At the close of those six months, the crisis began to ebb and then . . .

And then there was a void.

It is incredibly difficult to shift gears from a dramatic life-threatening crisis to normal existence.  It’s generally termed “the new normal,” but normal implies some regularity and predictability.  As I have discovered, there is none of that in a post-/mid-cancer crisis.   And, like everything else cancery, I’ll bet I am not alone.

Some weeks ago an individual sent out a tweet.  And you know how tweets are, they can take on a life of their own.

CaptureIt doesn’t matter who sent it, the intent behind it. to whom they sent it, or when they sent it.  But it touched a nerve.  I know some folks were incensed.  On one hand it reminded me of the thoughtless comment I read on a FB rant directed at me.  Something to the effect that so what if the royal “they” found a cure, it won’t benefit us (stage iv women).  I thought it was a selfish and narcissistic comment.  And I could have read the same attitude in this one.  But I didn’t.

Rather, I was intrigued.  After all, I had found myself in an uneasy lull; a lull for which I was ill-prepared.  And I began to wonder how many other women can feel stranded after their crisis.  Stranded enough to perhaps say that, sure, we need a freaking cure, but what about all of the women left scarred (physically and chemically), emotionally spent, with lymphedema, neuropathies, or countless other problems.  What about these “survivors?”

How do women feel after treatment or within  a stage iv lull?  How do you adjust?  Is there support?  Did these women feel forgotten?  Do other non-stage iv women, now temporarily relieved of the acute crisis that so irreverently took over their lives, wonder how to move ahead?

I’ve been asking a lot of questions of a lot of women.  As predicted, I am learning a great deal.  My intention is to share what I have learned with you.  In the meantime, tell me what you think:

  • Do you feel that there is enough attention paid to the needs of survivors?  That is, do you think orgs like Komen who tout cure and survival, lend any/enough support to you after the crisis?
  • Do you feel that books on the market about survivorship help or hinder you?  What’s missing from the conversation?
  • How much does the concern/fear of recurrence or metastasis occupy your thoughts?  Has it ebbed over time?  Are there PTSD triggers that you experience?
  • What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is–in an odd sense–left behind?
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50 Responses to When You Get the Good News

  1. There is so much confusion in the cancer world about what it means to be a survivor….I recently blogged about that very topic: http://perksofcancer.com/2013/04/09/what-is-a-survivor/

  2. Dear Scorchy,
    First, let me start by saying, YOU ROCK! I love that you’ve opened the floodgates for everyone to share! As an 11 year BC survivor who was diagnosed at age 34, ran the gamut of lumpectomy, double mastectomy, chemo ACT, radiation, double implant removal and so far 10 surgeries and counting ~ one more slated for April, I’m stage 3a due to lymph node involvement. I agree wholeheartedly that ‘they’ need to help those of us whose lives have been turned completely upside down by cancer. In my blog, I try to be upbeat and inspirational ~ partly because at least most of the time, I’ve accepted my new normal although it’s been a struggle. I started writing an e-book which I began as a course I wanted to give to reach out and show others what worked for me in case it would help them. It’s not all roses when you can accept the new normal and it takes a lot of time and healing to get there. Bravo to all of you for taking baby steps every single day because I know how hard it is to do!
    Scorchy, I adore your blog ~always have ~ and again YOU ROCK! If there’s ever anything I can do to help, just let me know! I’m here! And still kicking!
    Hugs to ALL! xo

    • Scorchy says:

      No, YOU ROCK! WE ALL ROCK!!! hahaha Thanks so much. You were one of the very first to read The Boob–so having you here for this exchange is special. xoxox

  3. dear scorchy,

    again, i feel a little shy about responding because our (hugh’s and mine) cancer experiences overlapped – and finding our way after such intense treatments with hugh now in remission and me NED, is beyond complicated. but what you have posted is so important i feel compelled to seperate my own individual response to finding my way back, or forward, or both (!) from the conveyor belt of 9 mos. of being in treatment.

    i feel that nothing could ever surpass the stories we share in the blogosphere when it comes to ongoing support. WE are where it’s at when it comes to understanding post-treatment challenges. the compassion, inclusiveness, empowerment and exchange of ideas has simply been life altering in such an incredibly wonderful way.

    lately, when i go for herceptin every 3 weeks, have labs, get echocardios, and go to all the inevitable follow-up appointments, seeing the clinicians who have known me since the beginning of treatment has been an opportunity to speak out about survivorship. i am met with smiling faces who compliment me on my hair re-growth, say i look wonderful, and ask how i am doing. i usually make a little joke – “it’s all smoke and mirror’s”, or something equally inane, to put them at ease, then i tell the truth of how hard it is ; how it’s a constant challenge to deal with the fatigue, the chemobrain, the sadness that oozes out of the pages of our calendar filled with medical appointments (still!), how the unbidden thoughts of a recurrence (i cannot, i wish i could, minimize the inner terror of thinking of both hugh and me having a crisis at the same time) drifts in and out of my head at the weirdest times, how i thought i would be so happy, so relieved when my last rad treatment was over, but instead felt collapsed like an old balloon, deflated and forlorn, the party over, and feeling not quite up to the task of the clean-up. i have the ears of the lab people, the cardio techs, the fine nurses in the treatment area, the valet, jack, who simply understands just by looking at me, and says each time i get out of the car with his sweet island voice, “it’s hard, i know, it’s hard baby”, my oncologists, the staff of every physician, alternative treatment people from the receptionist to the nurse practioners, and my oncologists. often their compassion leads to tears, we hug, comfort each other, i thank them for listeninng, they thank me for telling. i don’t say everything to everyone every time, but i give them a taste, a glimpse, of the truth. and just as important, they get news of the progress i have made – i learned to knit, i’ve made new friends, i can travel now, i joined the “y”. i am not a blubbering sob story of cancer. i may be a woman on a mission, but i don’t jam it down anyone’s throat, and i try to make each person feel the gratitude i have for their support. i believe they will not forget me, that when they encounter another person moving through the burned brush of a desert where their life used to be, blinking and trying to stand up on their hind legs, directions lost and without not a whit of an idea of where to find them – they will remember me, and at least be able to recognize another of the walking wounded, and maybe, just maybe, it’s a small start to REAL awareness.

    geez, this took up a lot of space! thanks, sorchy for listening, and know that you are helping so many people with this post. congratulations on your empowered doctor blog badge!

    love you, XO,

    karen, TC

    • Scorchy says:

      Reading your comments, those of fellow bloggers, and of my readers, I was able to encapsulate how I feel. And that is that living–not the cancer–is the hardest part of this all. Living every day post crisis is perhaps the hardest thing I have ever done–or will probably ever do. Facing life choices always with the concern of whether or not cancer will get in the way or if I have to leave something go because of it.

      That was my real awareness. It may indeed evolve over time, but this is exactly how I feel now.

    • Nancy says:

      “at least be able to recognize another of the walking wounded, and maybe, just maybe, its a small start to REAL awareness”. this is right on.

  4. AnneMarie says:

    Scorchy,

    This is such an important conversation and one that can leave us feeling helpless and scared. I’m cutting and pasting your questions since they are the basis for a great conversation.

    Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend any/enough support to you after the crisis?

    NO…. post active treatment, the best support I’ve found is right here. In the blogs and on twitter…. Facebook, too. The final chemo needle was removed and suddenly, I was flying without a net. That’s what I call the post active treatment portion of the program.

    Do you feel that books on the market about survivorship help or hinder you? What’s missing from the conversation?

    REALITY is missing from the conversation. Fears are often dismissed and too many people think it’s all good, because after all, it’s breast cancer and no one actually DIES of breast cancer anymore. WRONG.

    How much does the concern/fear of recurrence or metastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?

    Fear of recurrence or mets never gets easy. It just gets “easier” as more time passes between treatment and the present time. Although, in my case, the fear will live within me for the rest of my life. After what happened to my mom, every precaution taken and yet, she is now metastatic. It’s a crapshoot and seeing this up close and personal put it all right back in my face despite being six years post active treatment. THAT sucks. But it’s my reality. Do I let it consume me? No. But it’s there. Yes, PTSD triggers all over the place and the thing with them, I am almost always blindsided. I think I wrote about a triggering episode a few months back.

    What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is–in an odd sense–left behind?

    Who helps with the person left behind after the cancer cells are killed? I think we all need to find ways that work for us. In my case, I found yoga. And I found blogging…. The volunteering and the advocacy efforts have helped me. I feel like I’m doing something to push something forward. I’m not sure WHAT, but doing nothing left me feeling helpless. I may not make a difference but at least I feel like my efforts matter on some small scale….

    I’m still on pain meds for this stupid jaw bone graft so if this reads like it was written by someone in 3rd grade, apologies…

    There was a GREAT blog written on the ACS website… I’m attaching the link here. Dr. Len asks if we are “victims of our own success” ….. explaining how we are ill equipped to deal the the survivors….

    http://www.cancer.org/aboutus/drlensblog/post/2011/09/18/we-can-treat-the-cancer-but-can-we-care-for-the-survivors.aspx

    Love ya, Scorchy….

    AnneMarie

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  6. Susan says:

    I was wrestling with hoping that if I got involved with deadline2020 did it mean that people with Stage IV disease were forgotten since they are on a different deadline? Thank you Scorchy for raising realistic questions and allowing me to see that we must make sure we are doing metastatic research while we try to find a cure. I want to make sure that Stage IV are never forgotten and we all have to work together with this disease. Thanks Scorchy for a very insightful post that has me feeling so much better about the work I am doing and where I can concentrate my efforts.

    • Scorchy says:

      You’re doing great things, Susan. One person can make a difference–we see it all the time!

      • Susan says:

        Thank you so much Scorchy I needed some encouragement. You are the one doing great things and this post is spot on about survivorship. There are so many aspects of this disease.The lull you speak of after intensive work on treatment to living with side effects and wondering what happened before or what’s coming ahead is always with survivors of all stages and phases of their treatment.

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  8. Editor says:

    Ooh I enjoyed reading this! I am something of an evangelist when it comes to survivorship issues (and yes, I know that the word surivvor irks some – but it is a word that is used in research and until they come up with another all-encompasing word I shall continue to use it.). I had the incredible good fortune last month of presenting at a conference totally dedicated to survivorship at the Flinders Centre for Innovation in Cancer Research in South Australia. A whole weekend of talking about the issues facing everyone with a diagnosis of cancer – all cancers – all stages – bringing together patients, oncologists, psychologists, occupational therapists, researchers – well I was in my element! Speakers from around the world shared their insights into the most exciting developments in the field of cancer survivorship. One important point that came up again and again is that we need to plan for all aspects of cancer surivorship from the day of diagnois – that includes treatment, psycho-social issues, longer term chronic condiditons and issues such as fatigue, pain, etc. It is not just about treating the cancer as a disease, it really is about treating the person as a whole.

    • Scorchy says:

      This is so awesome, Marie. I would much rather focus on the REALITY of survivorship. Not the walk-a-thons, not the pink boas, not the hyped myth of everything is fine happy happy joy joy. Going through the medication, treatment–if we choose that route it is what it is. It’s when that is past and we’re standing there alone wondering where everybody has gone that is the real challenge.

  9. What followed after treatment was more difficult on an emotional level than being in treatment. It really is a form of PTS. You’re thrown back into your “normal” life in some in-between place and what made it worse was that well-meaning friends seemed to expect me to feel normal again, just because I wasn’t treating. I was so damned fatigued all the time. When I’d try to explain why I wasn’t up for certain things, I’d get comments like, “Maybe you’re depressed.” Why couldn’t they believe how long it takes to feel yourself? Or they’d drag me out because it would “do me good” and I’d just feel more like a space alien listening to them go on about the mundane. What was worse is my online support group during chemo all stopped posting, as did I, but I had no one to talk to who really understood until I started my blog and connected with the community of bloggers. Thanks for this post, Scorchy. It reminds me again that I’m not alone.

    • Scorchy says:

      Oh, the mistakes we make when we’re just trying to do the right thing. The community of blogging has been a true life saver. A few weeks back I had a bit of a writer’s block. At the same time I was stiff with stress, my jaw and hands clenched, irritable and unfocused. As soon as I wrote a blog post it was GONE! And the support network! It’s second to none. Thanks so much for being a part of that network, Eileen.

  10. No there is not enough organizational support for patients after the crisis period. This is cynical, but since certain organizations only sell pink rah-rah-ism without really producing results like reducing actual breast cancer incidence, I don’t have high expectations for them, and probably would not like the post treatment rah-rah either.

    I cannot say I sought out any books after my crisis period was over, because the ones I’d been given during the crisis mode were mostly in the “think positive and you’ll get better” vein, a notion I reject completely. The only things that helped me during and after have been the 3 other women in our being young with cancer support group, The Emperor of All Maladies (which no one gave me or recommended), and blogging (in other words opening my big mouth to list numerous complaints and hope anyone else agrees with it).

    Recurrence is a constant fear, one that is sharper each January and July when my 6 month check-ups with my oncologist approach. I have nightmares about it now-a year out of treatment.

    Survivorship is very confusing on many levels. In my personal experience at the cancer center in which I was treated, the disconnect started mid-way. I had chemo first to reduce the tumor size, then surgery. I then had radiation, while still visiting the chemo infusion side of the building every 3 weeks for Herceptin. Up until right after surgery, all my appointments were scheduled, handled, I was told where to be when. Once I went to the other side (of the small building), I kind of felt dropped. Initially I’d been told I’d see my oncologist, my surgeon, and my radiation oncologist on a rotating basis every 6 months, and that just seemed to fall apart. Since I saw three different radiation oncologists because of staff changes, I don’t feel attached or motivated to care about seeing her. I’ve informed my care team of my view about this and am confident it will get addressed. I live and was treated in a rural area, but the center is pretty progressive about treatment for the whole person, and in some ways is better than the center in the nearest cities. I have no real complaints there.
    The other problem is that I see some bloggers talk about being declared in remission or cancer free. I’ve never had that privilege. I just don’t have a tumor…right now, but I feel like everyone is just waiting for it to come back. Plus, in my support group there is confusion about the number we get after each blood test—what it means, if the doctors even put much stock in it, so I don t know if I should care about it or not.
    It’s like I’m still a patient, I’m just not sick today

    • Victoria says:

      I feel the same way. I’m not “well” but I’m not “sick” either (this is 2 months after the end of active treatment – next checkup in April)

      Concerning the support (or lack thereof) after treatment ends – I was one who felt as though she’d been dropped off a cliff to “get on with my life.” And it genuinely surprised me because my care was so damn good during treatment and I came to trust my medical team implicitly.

      It is all the more surprising since the problem of support during and after cancer is specifically addressed in the French government’s Plan Cancer 2009-2013. http://www.plan-cancer.gouv.fr/le-plan-cancer/5-axes-30-mesures/axe-vivre-pendant-et-apres-un-cancer/presentation.html. Their goal is to provide personalized help for those in remission or undergoing treatment so that they can “poursuivre leurs projets de vie.”

      I read that and am now looking around for that “personalized help.” Clearly it exists but I haven’t the faintest idea who to ask about it….

      • Scorchy says:

        Part of this is our humanness, right? We establish relationships with our medical team, the folks who work in the office and offer support services to the professionals. You learn a bit about one another’s lives and, despite the circumstances, look forward to seeing these other people who are working so hard to make you whole. So we feel empty as well, I think, because we miss those people with whom we established a relationship. This is not to say that these feelings are inappropriate, but it is one other element that serves, I think, to make us feel a little more alone than we were before.

  11. I learned something about glass the other day. When glass is heated to the extreme temperature it requires to shape it, it must be cooled slowly because it will crack under the stress of cooling too quickly. I was surprised to realise the glass is actually ‘cooled’ in ovens that reduce their heat over time. Why should we be any different? So many of us crack don’t we, when we’re just expected to suddenly return to ‘normal’ – whatever that is – post treatment. Perhaps we should all have our cooling ovens post cancer. Maybe it’s a blog, maybe it’s a support group, maybe it’s something else entirely. And it’s important to give ourselves permission to be in them for as long as we need to.

    • Scorchy says:

      THAT is the best metaphor I have ever read that describes this lull. You’re absolutely right. Oh so right! Thank you for commenting! xoxo

    • glimpsejoy says:

      So true! And for those of us who are blessedly and miraculously facing a few years out from treatment, we should also remember that a cooling oven can be a very beneficial place to revisit from time to time. Thanks, embracing chemo, for your beautifully expressed thoughts!

  12. Oh Scorchy, you are ever the asker of the hard questions! One thing I might add is that there is a certain adrenaline high in the acute stage of treatment that goes away with time. In my own treatment planning, I knew that I would have a hard time once all of the initial hub bub subsided and I would be expected to be more and more in the “real world.” So, I started seeing a lovely psychologist after the initial flurry of surgeries to help myself process the hub bub as well as to build myself up for the “new normal.” But I still go to doctors regularly and they check up on me. And with my TRAM surgery looming on the horizon, I’m going to go back to more frequent check in’s as well as 6 weeks off from work, which will be very hard but will also simplify my life. My plan is to keep getting “checked on” regularly until I feel I don’t need it anymore. So I’ll continue seeing my psychologist for a good while even after the other healthcare appointments subside to a dull roar.

    As a wife, mother, and professional helper, I do find it to be quite lovely to be taken care of by wonderful healthcare providers, who know what they are doing. What a relief. So even though I have to go into the toilet paper tube for an MRI, am poked with needles and scalpeled, and panini’d on a regular basis, I very much feel the caring and dedication behind these actions. And I love it when a nurse holds my hand or squeezes my feet during the most uncomfortable part of a medical procedure, even if the procedure itself isn’t really so painful. She is trying to give me comfort and it is a beautiful thing.

    As for whether I think there is enough support via Komen foundation, books, etc., I don’t really know yet for my own situation since I am in a temporary lull in my treatment.

    Finally, congratulations on your Empowered Doctor Blog badge! You are helping so many people and I am so glad that your wisdom is getting out there, wrapped in your uniquely Scorchy package!

    • Scorchy says:

      Where can I start? You are too kind. You know, you’re right, it is a kind of adrenaline high. And it’s kind of a let down when it’s over. Yet, there’s no way that you want that adrenaline high. And then you get it and . . . it’s kind of crazy, isn’t it? ACK! Fuck cancer!!

  13. sarenaperez says:

    I’ve written about survivorship on my own blog ChristmasCancer.com. I know personally it’s been very difficult adjusting to living again after I fully prepared to die. I don’t really feel there is enough attention paid to ALL survivors. I find that if you have certain cancers there is support but if you have others, very few. I have ovarian cancer which is not one of the “sexy” popular cancers. I have health insurance, but they won’t cover me speaking to a therapist more than once a month. I tried going through non-profits here in my area and they were not able to fine a therapist for me. I also cannot afford to pay a therapist privately and have been experiencing PTSD type symptoms. I have been managing them ok, but sometimes somethings set me off and I’m genuinely afraid of hurting myself, someone else, or damaging property. I am scared my cancer will return, especially since I’ve already lost one of my very close cancer “sisters” to cervical cancer at 27 and I know three other ovarian cancer survivors who have only been given weeks and months to live. My PTSD triggers are oddly enough…cars. I ride my bike and when cars get too aggressive with me I get VERY aggressive with them back. I feel as if they are trying to kill me and I am defending my life. I know my reactions are inappropriate and dangerous and I am working on changing them, but having a therapist would help.

    I’ve only really read one book on survivorship, and that is Kris Karr’s “Crazy Sexy Cancer Survivor” and I liked it. It was an easy read and had lots of interactive exercises that were fun.

    I feel that there is a responsibility to survivorship. Those of us who survive need to carry the torch for the fallen ones. This was such a life changing experience for me that I cannot just go back to a mediocre life. I HAVE to be a good person and HAVE to do as much as I can for the human race I feel. I feel incredibly blessed to still have my life and I do not want to waste it.

    Sarena

    • Scorchy says:

      Sarena,

      THANK YOU. Thank you for such an honest comment. I will contact you privately as I would love to hear more.

      xoxo

    • Oh no, Sarena does your state not have mental health parity in your insurance? Only 12 sessions/year? I am a psychologist practicing in Washington state and I am very sad to hear that you are not able to get the mental health care that you need. This is not a sufficient substitute but there are a couple of excellent books on the use of mindfulness practices for cancer survivors. Mindfulness can be extremely helpful especially for stress management and emotion regulation. One of the books is “Mindfulness Based Cancer Recovery” and Linda Carlson is the first author. The other book is “Here for Now: Living Well with Cancer Through Mindfulness” by Rosenbaum and Kabat-Zinn. I hope you don’t mind me giving advice and I wish you the very best!

      • sarenaperez says:

        Thank you very much for your suggestions! I have Kaiser insurance and I even mentioned the 2010 mental health parity act and they acted like they had never heard of it. I knew about it because I used to sell health insurance for a living.

        Pre-cancer, I used to sit zazen at a zendo near my house, so I am familiar with mindfulness practices. I have a friend of mine who runs a zendo here and she comes and speaks to me usually at least a few times a month. She also encourages me to come to the temple to meditate which I will be taking her up on.

        thanks for your suggestions!

      • You are very welcome. Good luck!

      • You are very welcome. Peace and healing to you!

  14. Reblogged this on mainelyhopeful and commented:
    Scorchy asks what now? How do you deal with the lull in treatment, survivorship…I was stage 2, grade 3 with lymph node involvement. I did the full gamut of treatment, surgery, chemo, radiation and now Tamoxifen. While I was undergoing “active” treatment (for some reason I don’t see Tamoxifen as active.. maybe proactive?) I felt empowered and very positive. For several months after my active treatment ended I felt anxiety that it would come back. I’m finally (sort of) past that but the only way I can finally move on is to stop identifying myself as a breast cancer patient or even survivor. In my mind I am someone who had cancer and now I don’t. That is always subject to change, but for now it works.

  15. keithw says:

    My love was on her own here for three weeks recently while I was out of state helping my siblings tend our mom. This was the first time we’ve been separated since her surgery and stage iv dx. Given her a lot of needed alone time to process things I think, without me hovering in the background.

    I think she is coming to terms with this “new normal” thing in her own way, I’ve noticed a change in her since I got back.

    She’s begun to address her dx more directly in conversation, and she was up at 3 am getting things done just this morning. There’s a ton of other little differences that you only notice if you’ve been around someone forever.

    She’s started lurking some of the forums and resources I’ve been going to in my effort to educate myself about this fight we are in. In time I am hoping she’ll sign on.

    She doesn’t want to surrender her life to this thing, so “acceptance” isn’t in the vocabulary. It’s more like chucking her gauntlet in that bastards teeth, and making ready to ram her Xena sword up its rear end. Yes, my love has a Xena sword 🙂

  16. Its such a roller coaster of emotions and fear of the unknown, the what’s next? The when is that other shoe gonna drop? We definitely need a cure…. A cure for our future generations. Even better, eradicate it altogether and never have to think about it. Cancer will just become a terrible disease that was suffered by millions in the past. By all means I’m sure we all want that to happen. Until it does, we need the medical field to come together and realize there is a very real need for specialized survivor care. Survivors are living longer. Survivors have the high risk of additional cancers. Survivors are experiencing late effect side effects from prior chemo/rads. There’s nerve damage, heart damage, liver and kidney damage, lung, dental, and GI damage. PTSD. The list is long. The potential of serious misdiagnoses or late diagnoses is incredibly high. Survivors of all cancers at all levels have a specific need for highly knowledgable medical care after the oncologist has done their job. Being released from that level of care and passed to a GP for what can be the rest of your life, is like being thrown into the abyss. Cold, lost and frightening. It just doesn’t work. Especially if the patient is unable to research and network with others to even have a clue what/who to see when the GP shrugs their shoulders. A survivor care clinic with knowledge of what can and does happen to the body after its been pumped full of poison and radiation to kill the cancer, would be ideal! I want a group of docs I can trust has the knowledge to take care of my life that was just extended. Someone who can help me get my quality of life back, or in the least get me to a point where life can be enjoyed. Someone who understands the PTSD. Someone who understands all of the collateral damage we are now experiencing. How do we get that to happen? Legislature? Laws to force insurance to buy in and have to cover this type of care? I don’t know…. I’m just a survivor trying to survive that has a voice.
    ~Cin~

    • Scorchy says:

      Thanks, Cin. That handing off to a GP freaks me out. I mean, I freaked out when the oncologist I was handed off to turned out to be a dispassionate nothing. I had a complete meltdown after that alone. I think of all other cancer patients as well. And to what degree does this pink madness cause kind of identity crisis?

      • dglassme says:

        This is the piece from Cin’s write up that gets me, “Especially if the patient is unable to research and network with others to even have a clue what/who to see when the GP shrugs their shoulders”. I can’t even imagine how my mother felt, without Dr. Google I’d have no idea what’s going on with my own diagnoses. Sorry but, I have to speak on behalf of the pour dumb hillbillies because I am one, many do not have access to the internet or smartphones so they only get what their doctors tell them which I’m learning is not much due to their limited time.

      • Scorchy says:

        Me too, Diane. I remember when Betty Ford told the world about her breast cancer (I’ve told this story a million times now). I absolutely remember the shock that someone wo0uld talk about it in public. I was only 13 and I saw it. And all of those women who, over the years, who not only lacked basic knowledge about their disease, but had no vestige of a support network.

        I love Dr. Google. SHE is amazing.
        xoxo

  17. I’m not stage iv (yet) but feel it’s only a matter of time, especially bc I was diagnosed at age 40. If the average female life expectancy is late 70s or early 80s, that’s a lot of years for me to live without the micromets gaining an edge, despite my best efforts to keep them from doing so. Of course, I was doing “all the right things” before I was dx: nursed my kids for a year, didn’t eat meat, ate lots of leafy greens, exercised 5x/week, got yearly well-woman exams, etc. Did it all and still got chosen in the cancer lottery. All that to say, I do feel the post-cancer lull, I do believe I’ll never be “me” again, and I do believe that the “new normal” is a bitch. In general, I think happy thoughts, but I really really really want my old life back. And my old boobs. These new, scarred, misshapen DIEP boobs suck.

  18. Katie says:

    I can’t contribute that much useful insight to this, but one thing I will say is that for me in thinking about this, I think there’s something to be said for the fact that once you have cancer, you’re never just you anymore. From the moment you’re diagnosed you’re thrust into different roles: fighter, survivor, statistic. I think that’s something people don’t realize–you never go back to being you, even if the cancer is gone, it still has this way of defining who you are for the rest of your life.

    • Scorchy says:

      That is what I an learning–not unexpectedly, mind you.

    • Wow, you and the people who replied to your post have raised many issues, and the answers are broad. I feel a little odd responding here, because after all, I’m “just” a Stage I, Triple Negative, and now a three year survivor. After the chemo was complete, and reconstruction was still in process, I also found myself caught in a lull, a gully between two realities. I didn’t know how to think of myself — cancer patient? cancer survivor? I didn’t want to be either. I just wanted to be Carolyn again. But of course, I wasn’t the same person I had been pre-diagnosis.

      The first happy thing that happened to me (and I won’t go into all the details now) is that I stumbled upon a hobby I wasn’t looking for: quilting. It became a passion within a few weeks, but more importantly, it became a new identity. I was now A Quilter — something I had not been before. When I went to the quilt shop, no one knew my past identity as a cancer … anything. i liked the anonymity. Everything else in my life was moving back into identities I had before (albeit, defined differently after cancer), but this was a new beginning and I loved it! It was also a new conversation starter with old friends and acquainted.

      I think it’s important to realize that we are each uniquely created and so we respond in a wide variety of ways to the diagnosis,
      treatment, recovery, and life beyond. Every life event changes us … motherhood, jobs, marriage, divorce, education, aging. Every life event creates a new normal. Cancer is one of those life events. It’s a scary one, to be sure, and it carries some hard topics, but so do many life events.

      Thank you, Scorchy, for posting because you’ve created so many issues which cannot be glibly addressed in one post. Thanks, Mainely Hopeful, for passing this on to your readers and bloggers like me.

      • Scorchy says:

        Carolyn,

        Thank you so much! This is something we breast friends say all the time “I’m just . . . ” I don’t care what stage it’s hell and we’re all walking through it. It’s a life changer–and how fascinating. I love your new “identity” as quilter. It’s a way I feel to some degree about blogging. Yeah, I blog about cancer, but it’s leading me to write a book and I feel like I’m Scorchy the archivist and blogger. I like this new identity.

        I may contact you privately for more of a discussion. Thank you so much for stopping by The Boob and sharing your thoughts.

        xoxo

      • Thanks, Scorchy, for your encouragement, and I encourage you to move forward with your plans for a book. I didn’t mention in my previous post that Author is another post-cancer identity I took on when I published my book last year. It’s called “Come Monday…My Journey on The PInk Ribbon Road” and it grew out of a journal I wrote during my year of diagnosis, treatment and recovery. I couldn’t bring myself to blog or even read anything about breast cancer on the internet during the time I was going through it — there was so much stuff all over the place and I found it overwhelming. I also found that when I talked with other survivors, inevitably they would either be frustrated that I was offered treatments that they weren’t, or they would praise treatments that wouldn’t be effective on my kind of cancer. Either way, I just wasn’t in a mental place to discuss treatment options — they vary so much from woman to woman, cancer types, stages … etc. And I’m an RN, so I can only imagine how overwhelming it must be for a person with little medical background!

        I’m glad to help you in any way that I can. Good luck!

      • Scorchy says:

        Thanks, Carolyn! xoxoxo

  19. A friend of mine’s wife successfully played the full game of cancer. During the weeks after…the cancer all gone stage…he said that she was grabbing life and cramming activities into every second of every day. He also said that her renewed love of life was killing him and all he really wanted on that particular day was to take a nap.
    ..oh and, “you’re crazy” (from your opening line).

    • Scorchy says:

      Thanks, funnyblogguy!

    • glimpsejoy says:

      Too funny! I believe my hubby would agree! We often try much too hard to cram as much into each moment as possible, and as a “survivor” of three years, I can tell you when we keep that pace up for long, it’s not just our hubbies that need a really long nap! I’m utterly exhausted, and your description has opened my eyes to the very possible reason WHY I’m exhausted! Thanks!

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