Cancer; the secret change

“I had no idea how much cancer sucks.” My patient’s observation seems silly, basic.  Of course, cancer sucks.  It maims, humiliates and kills.  It takes.  What made the statement remarkable was its source.  This is not a medically naïve person, waiting to die. Rather it was spoken by a patient in complete remission, likely cured, who is an expert in cancer care.   To her amazement, it changed life forever.

I think that sometimes we confuse cancer with sudden maladies such as pneumonia, a heart attack or maybe trauma like a broken hip.   These diseases are acute, painful and dangerous, but they are brief insults to the body and soul.  Once the immediate disease is gone from the body, they usually do not recur or spread. We survive. We heal.  They are not a permanent burden on our psyche or lives.

Cancer is not like that.  Yes, it can be sudden, painful and debilitating.  Yes, we are often cured; it may be very unlikely the disease will return.  The difference is that deep in our minds we never heal.  Cancer in remission does not leave.

Us, before cancer, is not the same as us, after.  Patients and families do not expect this transformation and are baffled that life is not back to “normal.”  It is hard to accept that a cancer patient is, somehow, always a cancer patient.

First, there are obvious and common physical affects.  Residual aches and pains persist for years.  Scars and permanent surgical changes like colostomies or mastectomies. Chemotherapy injuries such as loss of hearing, vision or neuropathy.  There may be slight shortness of breath or factors that decrease endurance.  Long term changes in skin, nails and hair.  Taste, and smell losses limit appetite and the enjoyment of food. The collapse of sexual drive or satisfaction.  Memory may not be as sharp. Sleep is erratic.

There is the scourge of fatigue.  Even after a good night sleep, you are bushed. Vitality is sapped.  Loss of concentration makes it hard to work or enjoy something simple, like reading a book, attending a play or watching TV.  You just do not have the energy, the excitement, the moxie.  Life may be drained of fun, satisfaction or purpose.

Perhaps the most pervasive change is the never leaving, always just around the corner, deep mental splinter, that reminds you that today or tomorrow, the cancer may come back.  Every discomfort seems to be a sign of disease.  Something “obviously benign” like the winter’s cold, a toothache, or heartburn after a spicy meal, can whisper like the first sign of a coming, growing, illness.  It is very difficult to “put it behind you,” when it is always in the back of your mind.

The clincher?  None of this is obvious to anyone else.  No matter how much family or medical caregivers try to empathize, to connect, to understand, surviving cancer is a deeply changing and highly personal experience.  The patient I quoted at the start is a gifted, loving and highly experienced cancer provider, with three decades at cancer’s bedside.  None-the-less, she was astonished to experience the transformation in her own life, which is before and then after cancer.

The cancer metamorphosis is different for each person and each patient.  None of us were the same before the dread disease and none of us experience its transformation the same way.  There is no “normal,” except change.

Cancer sucks…and it keeps on sucking.  Deep healing requires an understanding that things are not the same.  It requires communication and space, counseling and thought, support and patience.  It requires time to find the person you have become.

 

18 Comments

  • Paula Kaplan-Reiss
    Such an important piece which really conveys your empathy. But, it also makes me realize that I am not nearly as damaged as I could have been!
  • Liz
    I am on my 3rd major cancer. (Had I not had these I probably would have freaked over very early colon but that was sandwiched between my second breast cancer and one of the indolent, but no cure, lymphomas - all in 9 months and a very early and thin melanoma). Anyway I found that cancer sucks in a qualitatively different way between having early stage, node neg breast cancer twice and lymphoma. The no cure aspect of that adds a whole new dimension to cancer sucks that took me by surprise as I had had the two breast cancers prior to that. With the first breast cancer I think it took me around 4 years before I didn't think about it every single day, often multiple times (mastectomy due to AA breasts and 5.5cm tumor that somehow didn't show up in the mammogram and I didn't realize I should have pushed for a biopsy 4 years prior when noticing the lump - have or rather had dense breasts. Free tram reconstruction and I think, what around 40 or 50" of scars maybe if you measure them all). The second breast cancer was kind of eclipsed by the lymphoma (that dx was in progress 3 mo after the BC dx - had had B symptoms for 18+ months). I think about it on occasion. I think I thought about the very early colon for maybe 48 hours, same with the very early and thin melanoma. Now that would have been different I am sure had I not had all the other messes. The nhl - well I am not there yet - I think about that every day, almost always more than once. And like grief, I revisit the no cure thing on occasion, sometimes on many occasions, sometimes they are further apart. I think it took me about 18 months just to get used to the no cure aspect. I have had an enlarged lingual tonsil since last march so if that turns out to be a rerun (watch and wait because I can't afford a biopsy - looked at last last June, will be looked at next in mid May), I would have gotten just under 3 years NED. I guess this is just a really wordy way of saying that cancer sucks, in my experience the no cure aspect adds a cancer sucks layer that took me by surprise because by the time I hit that one I was a "cancer veteran"… so tell your patient there are a lot of varieties of cancer sucks beyond the one she was surprised by. Tell your medical students about this too… I think by seeing cancer patients all day every day this tends to normalize your experience such that what is a 10 on the richter scale of cancer sucks/emotional earthquake for the patient you tend to notice and expect early on and help the patient deal with. That is a 3 or 4 later in the cancer sucks gig tends to be not seen as much by the providers because, well heck we aren't in 10 mode. It is "normal" to be in 3 or 4 mode. And you forget that it is not normal for the patient - we (as patients) need to get used to that and figure out how to live in cancer sucks emotional earthquake country for the rest of our lives, something not in the experience of many oncologists except as a tourist.
  • alyce
    No we are never the same. Most Doctors probably wish I would go see someone else. I think I am less focused on my disease but I will not listen to the usual conversation about how good my blood looks, and then suggest that I should have a scan to look for something else. I will never again have radiation therapy, which destroys cells in my body and makes life harder. My physicians, Rheumatologist, oncologist are wonderful and caring people, but I guess at 76 I am tired of fighting so hard for an indefinite look ahead at a few more years.
  • As a breast cancer "survivor" I found this so personal to breast cancer that I couldn't resist quoting you on HEN BACKTALK. Thank you.
  • Dr. Salwiz, you're beautifully describing the reality for so many cancer patients diagnosed with a (mostly) invisible illness, particularly that day-to-day hypervigilance that few people could even imagine before experiencing it firsthand themselves, as brilliantly described in Liz's comment. I'm surprised, however, to see that you lump "heart attack" in the same acute care category along with pneumonia or a broken hip, as merely a "brief insult to the body and soul"! But as you know, heart disease is a chronic and progressive illness. There's nothing "brief" about that insult to both our bodies and our souls. And one of the biggest risk factors for heart attack is having already had one. Researchers on the profound psychosocial fallout post-MI suggest that 1/3 of heart attack survivors actually exhibit textbook signs of post-traumatic stress syndrome, with 16% of survivors meeting clinical criteria for acute PTSD, and a further 18% for moderate to severe symptoms (British Journal of Health Psychology). It is disappointing then to read here that a heart attack is "not a permanent burden on our psyche or lives". I'd love to introduce you to some of my own readers at HEART SISTERS (all MI survivors) who could quickly disabuse you of that unfortunate generalization. There is no 'five year survival' marker of relief or celebration for heart patients like us - and we have far more in common with the day-to-day experience of cancer survivors than has been represented here. regards, C.
    • Mary
      C, Amen! And here today is my 1 month return to work after 4 years! Still I wonder - is there another cardiac event on my horizon? Am I really better? JG
      • Congrats on being finally able to return to work, JG!
  • Kathy
    Dr. Salwitz, THANK YOU for validating me, my cancer experience and the New Me!! I can't tell you how liberating it is to see all my feelings in print, written by someone else..again..thank you!!!
  • Please look at ASEA for a possible way to increase cellular function, efficiency and communication allowing the body's cells to detect and repair/ replace damaged cells. www.jandsdavis.teamasea.com
  • Please look at ASEA www.jandsdavis.teamasea.com ASEA has helped a lot of very ill people. REDOX signaling technology is coming to the forefront of medicine. ASEA is the only way outside the body to replenish REDOX signaling molecules.
  • All I can say is "thank you for this article". I to am in remission and for most hours never feel any different then before cancer but then even if for a split second I think "might it come back or is it back".
    • I know this appears to be ambulance chasing, but please consider ASEA. It is an extraordinary biochemical/ biotech product that is changing the way people care for their health through REDOX signaling (damaged cell detection, repair/ replacement). www.jandsdavis.teamasea.com
  • Terry
    Very perceptive. I posted it on my FB page to share with my thousand friends.
  • Mrs. Patti
    Someone posted a reference to this article recently on Navigating Cancer. I must have read it at least a hundred times. It's me in so many ways in this battle I have been waging against cancer. I have shared these words many times, in the hopes that family and friends have a little better understanding of what I am going through. I just haven't had the voice or energy before to try to help those around me understand. Now, I just tell them to read this. Many thanks.
    • James Salwitz, MD
      I am glad I am able to help in a small way. Hang in there. jus
      • sandydavis3
        Hi Dr Salwizt, you may be interested in learning more about ASEA. The following lecture was given by the physicist who helped developed ASEA. It is quite remarkable. https://www.youtube.com/watch?v=06zFrxIT7rc&list=PLtw9iWxwfPldbJr9ZpRJrLuEW2UmMQp3i&index=42 www.jandsdavis.teamasea.com
        • James Salwitz, MD
          Thank you. jcs

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