The New Abnormal

Posted on: September 28th, 2018 by
10

The following gem appeared in my email inbox this week: this highly knowledgeable doctor from a very prestigious US medical school “encourages the return to ‘normal life’ or a ‘new normal’ following breast cancer.”

I think we can all read into the subtext of this quote: the good doctor wants patients to “get over it,” with the “it” being cancer. Also, the physician can help us survivors of this horrible disease live a “normal life” by helping us to cope after cancer treatment.

Trying to help survivors only after their treatment is like putting the proverbial cart before the horse. Don’t get me wrong: of course, patients should get psychosocial and medical support after their treatments, but what about helping patients — I’m thinking psychological/emotional issues here in particular — before and during treatment?

And I must say, the word “normal” is — and always has been — meaningless. There is no normal. This is especially true in the cancer realm.

Instead, cancer patients face different shades of abnormal. In fact, now that I think about it, if there’s no normal, is there really an abnormal?

Our medical system is broken: more than ever, doctors try to treat the whole patient, but their efforts fall short. My oncologist is wonderful and cares about my quality of life. But when I was diagnosed with breast cancer, his concern, understandably, was to treat the cancer aggressively. He did his best to comfort me, as did the nurse who hugged and rocked me gently while I wept like a baby in her arms. As did my oncology nurse who helped me during the cancer trauma by convincing me to continue my chemotherapy regimen.

These medical staff always try their best to help patients, but other than referring me to support groups, which sucked for me (click here to find out about one of the shittiest support groups ever), there was no effort to nudge me to find a social worker, psychotherapist, or other mental health professional. The entire focus was on killing cancer cells.

Ultimately, I paid a heavy price. After treatment, my mental health — deteriorating throughout treatments — eroded, and I have had to see psychotherapists (I eventually did fire one; more on her in another post) and a psychiatrist for medication to control the severe depression and anxiety I constantly experienced post-treatment. The PTSD flashbacks and up-all-nighters holed up in my bed have been no joy ride, but with the help of mental health professionals, I am living a stable, fulfilling life.

I know I’m taking a risk by writing this post; mental disorders have a stigma attached to them. I might be judged and written off as “crazy.” But the truth is, cancer can never return someone to a “new normal” state. What was unleashed on me years ago were abnormal cells. And 17 years later, I’m lucky and grateful to be alive, but I still have this trauma etched deeply in my psyche.

My mind is forever altered.

And it’s not because I’m experiencing a “new normal.”

Every day is a struggle.

I hate that I have to work so hard on my mental health.

But one of my greatest strengths is persistence, and I will never give up on me.

Interestingly, also this week, an article from Nursing Times appeared on my Facebook news feed. The article asserts that most women in England with breast cancer have not been told about possible post-treatment anxiety and depression: “The landmark survey of nearly 3,000 women with breast cancer in England, carried out on behalf of Breast Cancer Care, found 33% experienced anxiety for the first time in their lives after their diagnosis and treatment.”

Samia al Qadhi, chief executive of Breast Cancer Care, one of the charities that conducted the study, said, “‘Damaged body image, anxieties about the cancer returning and debilitating long-term side effects can disrupt identities and shatter confidence, leaving people feeling incredibly lonely, and at odds with friends, family and the outside world.’” To read the entire article, click here.

The survey results might seem alarming, but they don’t surprise me.

The US is also abysmal in helping the mental health of those with breast cancer or who have had breast cancer.

Doctors must understandably focus on treating the disease, but I wish they didn’t do so at the expense of sacrificing the person who has the disease.

This October, instead of a conversation on the heroic, brave breast cancer survivor-warrior archetype, I would like the conversations to veer toward research for a cure one day, as well as to those of us who find ourselves mentally and physically incapacitated by cancer and its treatment effects.

Happy Face

Pinktober will be filled with insensitive, often-crass promotions and cause marketing, and we survivors will be expected to put on a happy face. But what patients like me care about is to be physically and mentally healthy.

How has cancer diagnosis and treatment affected you psychologically and/or physically? I am eager to hear from you on this matter.


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10 Responses to The New Abnormal

  1. Kathi had this to say about that:

    With you all the way on this. I’ve had to go back on my meds for depression/anxiety and for fatigue/concentration. And I’m ten years out. As of today, I’m still waiting for results from my mammogram 4 days ago.

    Oy… xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Kathi,

      I’m sorry that you have had to go back to your medication, but I’m hoping that they help you a lot. It sucks that you have to wait for results for your mammogram. Why do they make patients wait so long? Ugh.

      Sending you warm cyberhugs.

  2. Scott Johnson had this to say about that:

    My experience with cancer was bad and made worse by having had totally careless cardiac care. On two separate occasions I was ignored and allowed to deteriorate to an almost irreparable condition (second time I went into coma before arriving by air-ambulance about an hour after being sent home to rest) in spite of being under “close-observation”. Have learned that people will look you in the eye and not necessarily lie to you but more a case of just not wanting to get involved in your death even though they are working as care givers at a medical facility.

    Cancer for me for me was affirmation that beyond my wife’s advocacy the system considers me an inconvenience and based on that belief I take medical practitioners as being less on my side than a typical waitress who sees me as bad tipper before I even take a table.

    So yes, I’m messed up and don’t take medical people seriously or consider them care-givers, just mechanics. Been told repeatedly to “get over it” but why? What would I do to that would convince people that letting me die was a bad choice? I take medications and do everything I can to not fall into carelessness or doubt people’s experiences. It’s hard work.

    • Beth L. Gainer had this to say about that:

      Hi Scott,

      Thank you for sharing your experiences. You have certainly been through hell. Your words “the system considers me an inconvenience” are heartbreaking, as is your story.

      Patients should never be ignored nor allowed to deteriorate mentally, physically, emotionally, spiritually, and so on if there’s a way to help a patient.

      Thank you for your comment, Scott.

      • Scott Johnson had this to say about that:

        Thanks Beth. Obviously I’m angry about the treatment I’ve received and that may be a typical male response though not the least useful. Except that there might be some kind of value in owning our pain as confirmation of our strength or scars to show how tough we are, finding value in bad experience will eventually poison us.

        Me, I’m becoming interested in resolution techniques where I can remain intact and not defeated but also able to move on. To renew things.

        Like this sort of: I need the eggs – Annie Hall
        https://www.youtube.com/watch?v=ptvJy4sz724

        • Beth L. Gainer had this to say about that:

          Hi Scott, it’s completely understandable why you are angry. Moving on is definitely a good goal; of course, it’s easier said than done.

          Hang in there,

          Beth

  3. Marceil Brumaghim had this to say about that:

    I have had the unfortunate battle with cancer for well over 30 years battling with colon, thyroid, breast and another rare colon cancer as a sidebar to the original. “Thankfully” I have only had chemo twice out of all those years being both within the last 7 years. Just when you think you might be feeling a little more “normal” to get knocked right back off that horse. The medical care for the most part was superb but no matter how well the care is, unless those doctors and nurses have had their turn at it, they just don’t get it. The chemo side effects, the fatigue, the loneliness is causes and even darker thoughts sometimes. I feel the worst for my husband mostly, but the family as well, that they are also dealing with the worst side effect being that of the depression and anxiety. Yes, I get up and go to work everyday, as I did all through the treatments, to make it look like I’m normal. But I know that I’m far far from that. I wouldn’t know it if I saw it these days. the final thing I have learned from all this…when someone asks, “how are you”? they really are only being polite…they don’t really want to know the real answer. I am thankful that I have been able to walk away from all this in mostly one piece but there’s a long way yet to travel.

    • Beth L. Gainer had this to say about that:

      Marceil, thank you for sharing your story. You’ve had such difficulty, so I understand why you feel depression and anxiety. You are right: When people ask “how are you?” they never really want to know the answer, unless it’s of course, “fine.”

      Do you go to therapy? If not, perhaps that would be helpful. I must go to therapy in order to help myself. It’s a safe space for me, and there aren’t many safe spaces left in the world.

  4. Julia Barnickle had this to say about that:

    Living with Stage IV, I totally understand your wish to find a cure rather than focus on the “heroic, brave breast cancer survivor-warrior archetype” Beth. A social media friend recently commented that I was a “warrior” – intending it to be encouraging. I thanked her for her comment and pointed out that I see myself as a Peacemaker rather than a warrior – which she saw as an “awesome approach.”

    I also find it hard to reconcile myself with the way the medical profession treats primary breast cancer aggressively – when you have secondaries, the treatment is generally more gentle, because they are no longer trying to “cure” the cancer but to extend your life as much as possible. I actually refused the agressive treatment after the first cycle – which some might say was stupid, but it felt right to me.

    I count myself as fortunate, in that I have never suffered from the kind of psychological problems and depression you talk about – despite the fact that occurrences of metastases in my spine and brain have made it difficult for me to get out and about as much as I used to, for the time being, anyway. It’s just the way I am.

    I think the medical profession, here in the UK at least, is gradually changing how they view breast cancer patients – but I agree that there is still a long way to go, to adequately help patients who are struggling mentally and physically.

    • Beth L. Gainer had this to say about that:

      Julia,

      Thank you for your thoughtful comment. I’m sorry that you are living with Stage IV. You made a really good point here about how medical professionals aggressively treat primary breast cancer and are not as aggressive with secondary cancer. To be honest, I did not know this, so I appreciate your sharing this information.

      Again, thank you for sharing part of your story.

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