What I wanted most of all in the early days after my breast cancer diagnosis was to get back to normal. It felt as if some strange force had taken over my life, and I longed to be back as I was as if none of it had happened.
I remember walking down the street, and thinking that everyone I saw passing by was normal because they didn’t have cancer. I felt different. And my life felt out of control. This thing had happened to me out of the blue. What else could happen now? What I wanted most of all was to get back the familiar feeling of stability, that there was some sense of predictablity about life.
What symbolized stability and predictability? For me it was simply the ordinary routines of life, which I had been thrust out of as I coped with the immediate aftermath of the diagnosis–the deluge of appointments, testing, surgery, and the start of chemo. I wanted to get back to my job, but I wasn’t sure at first how cancer treatment would affect my ability to work and for how long.
What does it mean to “get back to normal”?
A recent study published in the European Journal of Cancer Care looked at how patients viewed their personal identities in the aftermath of a cancer diagnosis. The findings were based on interviews with patients with stage 2, 3 or 4 breast, prostate or lung cancer. The patients were at different stages in their treatment, from soon after diagnosis and not having begun treatment to 18 months after diagnosis and having completed treatment. The patients were interviewed about their emotional experiences following their cancer diagnoses.
The researchers began with a sample of 42 patients who were interviewed about their psychological needs following a cancer diagnosis. As the researchers interviewed patients, they were struck by how many (28 of the 42 patients) referred to “getting back to normal” as an important goal. So they interviewed those 28 more specifically about what “normal” meant to them.
Normal meant different things to different people, but the paper describes two distinct views of what is “normal” that came through in these interviews. In one view, the emphasis was on continuity with the person’s life before the diagnosis, on getting back to previous routines and minimizing the impact of cancer. This view was most common in recently diagnosed patients.
The other commonly held view was of a “new normal” in which there was a distinct break or change in the individual’s identity following their diagnosis–they viewed themselves as changed by the experience. But only a few of the patients held this view exclusively.
Is there an intermediate stage of adjustment and do we ever get back to “normal”?
The researchers found that most patients’ accounts included elements of both perspectives–unchanged and changed at the same time and often in contradictory ways.
Based on these findings, the researchers say they believe that holding contradictory views of what “normal” is, i.e. returning to familiar routines as the same old self, or a “new normal” as a person changed by their experience with cancer, is an intermediate stage of adjustment for some patients. They suggest that holding these different perspectives simultaneously is healthy as patients process their experience.
It’s interesting that those who emphasized wanting to return to a pre-cancer type of normal were not viewed as being “in denial”:
…our findings evidence the effort required to maintain continuity with past identities. This indicates the psychological importance of a sense of continuity with the past for those patients who asserted it. Patients were not simply ‘in denial’, but engaged actively in the construction of a personal story that mitigated the devastation of cancer.
It was also interesting to note that the perspective of having a new, changed personal identity as a result of cancer did not necessarily reflect an experience of personal growth or improvement:
Our findings do not easily accord with the implication of an improved psychological state. Even patients who described a changed sense of identity could also describe being unhappy or distressed.
I think that underneath we all know that life isn’t static, and maybe we don’t really want to go back in time. Often we have physical changes that will always be with us. What we really want is not to feel changed and vulnerable. It feels so alien. We do realize that things are different, but what exactly that means we don’t know. So we try on different scenarios. We hope for the best. And we don’t want to be blindsided again. Maybe we realize that we just don’t have the kind of control that we thought we did and we learn to make the best of that situation. Maybe that’s just life.
I know that my own sense after completing treatment was of having been changed by the experience. But what exactly that meant was a big open question for me for a long time. I also processed my second diagnosis of early stage breast cancer 12 years later very differently than I did the first.
I didn’t quit my job or set off on a great adventure. But I did gradually draw some insights about life that perhaps I could say became part of a “new normal” for me. For example, one element for me was learning better strategies for regaining a sense of control. That meant realizing that what we do have control of is the many small choices we make every day that add up to the life that we live. There was too an intensified awareness that time really is precious and we need to choose very carefully how we spend it. And I also came to realize more concretely that all of us have the ability to help others by sharing our stories and experiences, no matter what road we’ve traveled.
I think that we do eventually come out of that middle zone–not necessarily quickly or all at once. And that doesn’t necessarily mean we have everything figured out or we’re done processing what we’ve been through. I know that my perspectives to some extent have continued to evolve and change over time. And I think that’s natural, whatever our life experiences, both the good and the bad, turn out to be.
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