The well trodden path

Cancer Culture Chronicles

Featuring 'Newman' - mascot for The Cancer Culture Chronicles

Today’s post is a piece written in December 2010 by fellow blogger Rachel at The Cancer Culture Chronicles. Rachel is 41 and living her life dealing with metastatic breast cancer, having been first diagnosed seven years ago. The mascot for her blog is her lovely dog, pictured above. I love Rachel’s writing, she is snarky and opinionated; and she’s become my closest cyber friend. You’ll be hearing more about her and our friendship on my blog.

This piece is a powerful reminder that breast cancer ‘survivorship’ is not guaranteed to any of us following diagnosis. And Rachel’s words continue to teach us about the reality of metastatic disease – a subject that is often not mentioned in breast cancer culture. The US based independent group MBCN (Metastatic Breast Cancer Network) has a list of 13 facts everyone should know about metastatic disease. And I think the most shocking one is this:

Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

That’s the truth about metastatic disease. This Thursday, the 13th October 2011, is Metastatic Breast Cancer awareness day, and I’d like to ask you to share this link to the list of facts about MBC.  The MBCN also has a list of suggestions of other things you can do to to increase awareness. 

Here’s Rachel’s post. 

“In many respects, the experience of breast cancer feels like a well-trodden path walked by so many before and so many more, in ever-increasing numbers.  The culture of the breast cancer experience tells us that on this path there are significant milestones, all of which bring their own challenges and emotions, but for which the ultimate prize is a life free and clear of breast cancer.

And so we wearily walk from “Diagnosis”, through “Treatment”, to “Recovery”, to “Survivorship and a Life After Breast Cancer”.  And although getting to each of these milestones seems impossible at times, the culture tells us that if we muster all of our womanly strength and courage to keep bravely fighting, we will get through this and we will have reason to celebrate when breast cancer finally feels like a distant memory. And, fortunately, for many, this is exactly how the experience plays out.

But what about those of us who are living with metastatic breast cancer?

I embarked on the well-trodden path in 2004 at the age of thirty-three. After umpteen surgeries, chemotherapy, radiation and other treatments, by the end of 2005,  I was declared cancer-free and finally felt like I was moving forward. I went back to work, resumed my life and really thought breast cancer was becoming that distant memory. It certainly seemed like a good time to celebrate. I embraced my role as a proud and victorious survivor. I was an advocate for the cause, I raised funds for breast cancer research, I founded a support group at work. I was doing all of these things in gratitude for the life I had been given back.

Fast forward to 2007 with a recurrence then remission, to another recurrence in 2009, and all of a sudden I found myself transformed from victorious breast cancer survivor to a woman with Stage IV breast cancer.  I felt angry that the disease had come back despite everything I had gone through and I felt cheated by a breast cancer movement that seemed to have no place for me. What exactly had I survived? Where was my cure? Why did I no longer feel part of a sisterhood of shared experience?  I had let everybody down. I had failed to reach the holy grail of milestones – that life after breast cancer.

Living with metastatic breast cancer is a strange  and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about.  There is no definite end to treatment, unless it simply stops working, in which case you move onto the next option. If you still have options. Each passing year, instead of feeling like a cause for celebration, feels like another year wasted to breast cancer. Some people might say, but aren’t you just grateful to be alive?  And the answer to that is yes, but it’s not that simple.  Because the unspoken part to that question is for how much longer?  Every scan we wonder, is this the one where the cancer shows its hand?  A “good” scan is one where the cancer doesn’t grow. Too much. And every three months we steel ourselves against the fear of what new horrors the scans might reveal. Sometimes it feels like we barely have time to take a breath between fearful takes.

Someone recently asked me if I ever get moments of pure, joyous, freedom of thought. The honest answer to that is rarely. When you feel like the disease is consuming you, no matter what you do, and you can’t remember a life before breast cancer, it’s very difficult to think of anything without it being tainted by breast cancer in some way. Let’s go on  a vacation. If we can fit it in around treatment. It’s time for dinner. It’s time to take my pills. Let’s go for a walk. I’m too tired. I can’t wear that dress because you can see my port and scars. I can’t sit in the sun because the chemo makes my skin burn. Will I be able to keep tending my garden? Will I see my niece and nephews grow up? Will my beloved and I get to grow old together? Why me? Why me? Why me? It just never ends.

So how do I cope? For me, it’s writing. I’m angry and frustrated and I like to shout to the universe. I think I’ve earned the right. I’m also a keen observer of the world around me, and I write about the way I see it. It’s not for everybody and that’s okay with me, but it’s the way that I cope with a situation that is so uncertain, so uncontrollable and so completely insane, that it seems like a miracle that my brain and voice still appear to be intact, despite it all.”

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19 thoughts on “The well trodden path

  1. Great post! As a fellow metastatic breast cancer patient, I am trudging along that very same path as Rachel and fully agree that its a very lonely road to travel… I’m full of admiration for Rachel’s writing and it shows that indeed, her brain and voice are still very much intact and being put to very good use – thank you Rachel!

    And thank you Sarah, as always, good to read! Best wishes, Irene xx
    P.S – Isn’t the awareness day on Thursday 13th October, not 15th?

    • Irene – thanks for your comment and glad you found someone you could relate to here. I’m sorry it’s so lonely… I hope that finding friends in cyber space can make it less so, it certainly does for me.
      And thank you also for correcting me! Yes, how did I manage to get the date wrong… you are right, it is 13th and I will correct that immediately. Thank you. Best to you, Sarah

  2. Rachel, It makes me very sad to think you have so few moments of pure, joyous, freedom of thought. It’s also totally understandable. How could you when your life seems consumed by cancer? Your statement saying you feel living with mets is a very lonely place to be strikes a chord with me and also makes me angry. It seems to me, this statement illustrates one of the greatest failures of the pink movement. It has not embraced the mets community, but instead has left those living with mets feeling like outsiders. Shouldn’t the pink movement instead be embracing those with the greatest need of its support?

    I’m so glad you find writing to be such a useful coping tool, Rachel. I find that to be true as well. Keep on writing about your frustrations, anger, observations and all the rest. We’re listening.

    Thanks to both of you for this post.

    • Thanks Nancy. This piece has been posted several times before in the last year, but it still has much to say to us all, whether we have mets or not, or if we’ve had a breast cancer diagnosis or not. It tells the reality of breast cancer that many people are quite simply unaware of. Thank you for listening.

  3. My mother passed from breast cancer mets to the bone Aug. 16, 2011. I enjoyed this post (as much as possible) as it gave me insight to what my mother must have been feeling – she had breast cancer in 1980 – took 30 years to move to mets to the bone. I miss her every day but am so glad that I was able to be her main caregiver during the last 2 years and be with her during her final moments. It is so frustrating that so much of the support of bc is to those surviving bc but not to the mets victims. It is a constant worry and always in the the back (and front) of your mind daily – so wish we would make quicker progress for this disease

    • Vicki – thanks for coming by and commenting. If you’re not familiar with Rachel’s writing please do visit her blog. She writes from the heart and has the ability to make me laugh and cry with her observations. I too want quicker progress for everything about this disease. Prevention and cure. Best, Sarah

  4. Thank you for raising the subject of secondary breast cancer. Having being diagnosed with breast cancer in 2010 and then mets in 2011 at the age of 28 I can relate to much of what Rachel has written. Unfortunately my experience of where I was being treated seemed to be ‘we can’t cure you so you’re not a priority.’ I had to seek second opinions to get the best care – which is the last thing you want to do when you are feeling vulnerable. Thanks for the great blog.

    • Thank you Ellie, and sorry to hear that sentiment about not being a priority because you can’t be cured… that’s very sad to hear but glad you’ve been able to access other opinions and better care. All best to you, Sarah

  5. Rachel, I am so sorry that you feel left out of the bc loop. I can totally see why. With the survivor rates increasing, there is less attention paid to metastatic bc. As a 3+ year survivor, mets are my scariest nightmare. I’ve been told that I should consider myself cured, but I will most likely never believe it. I’m sorry that you have to live with the “stuff” nobody understands. At about 3 years, I felt the everyday cancer issues leave my constant thinking. I felt like I could get back to a normal life and stop having it be about me all the time. I wanted to catch up with friends and family and be present in their lives. Have you contacted some of the large breast cancer companies for help to form support groups and to raise awareness? I know there are a lot of opinions about the Susan G Komen for the cure organization, but they do have grants for lots of different things. Also, if you haven’t done yoga before, I highly recommend it. Peace and Love, Mary

    • Thanks Mary for reading. Yes, the reality of a breast cancer diagnosis is that we’re never free from the possibility of mets. That is scary. For all of us.

      You are right – there are lots of opinions about Komen, you may want to have a look at Rachel’s blog posts about Komen. She wrote a series of very illuminating pieces highlighting just how little is actually going to research for metastatic breast cancer. The first one is here:
      http://cancerculturenow.blogspot.com/2011/01/komen-by-numbers.html
      And there is another interesting website about Komen’s activities here:
      http://komenwatch.org/

      All best to you, Sarah

  6. Thanks for posting this. Very powerful. I’m in the post-mastectomy (on March 8; no radiation or chemo), pill-popping phase of waiting to see if I’m among the 20-30% who have recurrence. As such, I found myself wondering about food/supplement choices. Because I’m one of your regular readers, I want to tell you about a resource I and my employer, the American Oil Chemists’ Society (as in fats and oils, not petroleum), developed. Yes, my feature on soy foods and breast cancer is in the October issue…but that was oversight and not design. (I hate pink.) But we are making the feature–complete with live links to all the abstracts–available free of charge to anyone wishing to visit http://www.aocs.org/soy. Would that I hadn’t had the personal need to answer the question about soy foods and breast cancer patients; at least other people can benefit from my exhaustive and exhausting research!

    • Thanks for the post Catherine, and the link. The research you’ve written about sounds very interesting. And as you wish in the link, I too hope you’re not just creating very expensive urine!

      And yes, it’s Ronnie here, Sarah’s partner. Helping out with the blog. Doing this blog-a-day thing has turned out to be a big commitment, needing both of us!

  7. Thanks to all of you for your wonderful comments here. I have found so much support and community via the blogosphere and I do wonder what I would o without the Internet. It is quite frankly a life line for me and has helped ease some of those feelings of isolation. Best to all of you. Rachel

  8. Adrienne lived with metastatic breast cancer for 6 years. She hated the idea of being treated as either a victim or a hero so she kept her condition a secret from her family, friends and work colleagues right up to the end.
    We maintained the story that her progressive disability and bone pain were related to osteoporosis or something similar. The fiction allowed her to lead a “normal” social life, being treated with respect and affection at work as a teacher, as a mother, daughter and as a friend. No triumph, no tragedy, as they say in the disability rights movement.
    After her mastectomy in ’96 she was given the All Clear and given no cancer related drugs – the mistake was found a year later by which time the disease had metastasised. Whether earlier treatment could have saved or extended her life we could never know and it never concerned her. She took the view that she was living with cancer, not dying from it.
    Adrienne died on 12th October 2003. I’m sure she would have appreciated this blog and wished all its contributors strength and peace.

    • Jack, thank you for your comment. I’m saddened to read that Adrienne kept her disease a secret. I think that shows why we need metastatic breast cancer awareness…. even though we can now mention breast cancer in polite society it still carries a stigma, as I know myself from social situations where I’ve ‘come out’ – and subsequently been pitied or shunned. No we aren’t victims or heroes… we are just women living our lives dealing with the hand we’ve been dealt.
      All the ‘anniversaries’ of cancer are difficult and I send you gentle thoughts for this one.
      Best, Sarah

  9. So powerful, Sarah and Rachel. This is what really hits me: “Living with metastatic breast cancer is a strange and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about.” Thank you for speaking about it. – Gayle

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