No one wants to be schooled by cancer. As we frequently said ruefully in our cancer support group, "we're in the club nobody chooses to join". But the reality of cancer is a harsh teacher for the patient and the whole family. My physician wife, Kate and I, the psychologist, have spent our lives helping people go through the most difficult physical pain and emotional suffering and emergency crises. We had both lost parents when we were still children ourselves. We might have thought we were prepared for the assault of cancer.
We weren't.
We might have assumed we could somehow prepare our kids for the worst.
We couldn't.
From the moment I woke up with acute shoulder pain and began the blood tests, MRI's, PET scans, work-ups, diagnoses, then multiple kinds of chemo, it was as if we fallen down the rabbit hole. Our whole family was turned upside down like Alice in Wonderland, suddenly at the mercy of the mad hatter, the cheshire cat, and the tyrannical queen. We were strangers in a strange land.
Now, we've gone from practically having no chance to a very good chance that I might live. Many of my colleagues, clients, and friends have asked me what have we have learned as a family?
Here's some of the survival lessons we learned in cancer school.
1) Embrace our differences.
Each of us had very different coping styles that could have caused conflict and judgment We came to recognize that truly accepting each others' different coping styles was a key element in staying close.
2) Two of us paying attention to one of us at a time.
Kate and I in particular needed to take turns regularly talking about our feelings and fears because I needed to be able to listen to her dread about life without me with all my heart and I needed her to be able to tolerate my bouts with passivity and even disinterest about my surviving.
3) Chosen silence works better than frozen silence.
Sometimes when we were all having some very difficult feelings about whether or not this would be the last sail, or the last Thanksgiving or birthday, it worked better for us to agree that we would not talk about our feelings and just carry on as best we could. It was very important to all of us to be able to say kindly but directly when we weren't able to be emotionally responsive to each other. Choosing together to not talk about it felt better than our covert collusion in avoiding the the rather large, smelly elephant in the room.
4) FFF (forced family fun)
Sometimes just being together whether we felt like it or not helped us get through difficult times. We played endless hours of bridges and watched a lot of not very good movies just in the effort to be in each other's company.
5) Grieving alone isolates - grieving together heals
Family meetings actually helped us. On a regular (probably three times a week) we would meet as a family and check in with how everyone was doing. Sometimes these were quite emotional sessions but frequently it just a form of reporting often times with considerable teasing of me, the therapist, who was most frequently pushing for these meetings.
6) Letting help help.
Friends and family poured out support and love and we all found it to be important to really accept help and care rather than to simply try to be stoic through out and always maintain a stiff upper lip. Care taking helps and you're not being weak or a burden to accept it. Also, it made others feel good to know that they could be helpful.
7) Setting realistic expectations
It was very difficult to learn what to expect one could do going through the course of this illness. Sometimes we could function almost normally and sometimes we could barely get out of bed. Accepting our emotional and physical limitations was incredibly important.
8) It takes one to know one.
I found it very helpful to be in a cancer support group even though many of us were in seriously rough shape and in the end half of the members of my original group died. In our meetings we had the gift of truly feeling like we understood what each of us were going through and we literally did not have to explain ourselves.
9) Recovery takes much longer then one might expect
It's taken us as individuals and as a family a long time to find our emotional balance since my cancer. In some ways, the second and third years were harder than the first as the fear of recurrence and the underlying sense of vulnerability influenced every aspect of our lives. Accepting that being physically better didn't necessarily translate into feeling emotionally better was surprising particularly because of how lucky we were.
10) "It's not your fault"
Sometimes cancer patients like myself can feel that somehow getting cancer is their fault or that recovering from cancer is dependent of their having the right attitude. Personally I think that cancer is an equal opportunity disease by and large and that it actually increases the burden on the patient if they are made to feel that the right positive attitude will determine the out come. Good treatment and good fortune are the most likely determiners of the out come.
11) Don't be afraid to say you don't know what to say.
Many people seemed so uneasy around my illness that they would either avoid talking about it or say things that were truly not useful like, "I am sure you'll be okay. You have such a positive personality" or "You don't deserve to have this happen to you" Does anybody? but silence could also be hurtful. Don't be afraid to say you don't know what to say. Don't be afraid to ask the patient what might be helpful. It helps.
12) They can't all be precious moments.
When you're not sure how much time you might have to live, it can be a tyranny to expect that one should always utilize the gift of the time you have well. Sometimes the best you can do is waste time just as if you had a lot of it. Sometimes our best effort is a d+.
These few a few of things we learned. And we are still learning. One doesn't really every graduate from cancer school. However, now that we seem to be more on the other side of it, we sometimes forget how exceptionally lucky we are; how grateful we should be. Forgetting to appreciate and getting caught up in the daily hassles can feel really bad.
I remember saying to a grizzled tough looking man in the waiting room ‘Have a nice day." He looked at me with a combination of a scowl and a smile and replied gruffly, "Any day above ground is a good day" I try to remember that. Always.
