Patients' Perspectives:
Being a Survivor

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This document is NOT intended to provide you with medical advice.  You should consult qualified practitioners in your area for such information.

What follows here are the notes I have from a talk given by Halina Irving, who is a therapist in private practice in Encino, California, and who is on The Group Room each Sunday afternoon (see the Vital Options web site) when she came to our group, in November 1998. She is, herself, a survivor -- both of breast  cancer and of the Holocaust -- as well as a survivor of her parents and her sister who all died of various cancers. In addition, I have added some of my own thoughts to the notes.  You can tell which thoughts are mine because they appear in dark green italics while Halina's are in normal black type.
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Survivors of cancer or another life-threatening disease learn many things that others don't learn until they're in a similar situation.  Particularly for this reason, It is also important to remember that some survivor issues may equally apply to those around the survivor.

Survivors experience great changes in all relationships, with family, spouses, friends, children, at work, even in relationship to themselves as well as changes in body image. Within the family or between spouses, these changes in relationships frequently cause stress that may come to a head some time after treatment. It is absolutely normal to focus on treatment during that time.  By the same token, when treatment is over, survivors find they need to deal with other issues.  At home, this can mean needing to give more attention to kids or significant others. At work, particularly because survivors often feel some responsibility to return to their jobs before they can perform at the same level as before they became ill, non-treatment issues may become important.  One of the things I've found my friends do is try to work when they clearly are unable to function at a high level.  It's frustrating me to watch them try to accomplish something that they can't do; but it's equally important not to discourage them from trying.  Some approach between being encouraging and discouraging can help them out.  Trying to recall my own experience, I know that I must have had the same problems but I didn't know it at the time.

Added to all of these external stresses are the stresses of integrating a new body image.  Some of these are becoming familiar with a "new" body, no longer being able to do certain things,  learning about one's new shape, and learning about a body that may not feel at all familiar.   An online resource oriented towards the "post-mastectomy" body is on the Sapient Health Network in the breast cancer foyer. This resource is the text of a chat that took place during the evening of 29 January 1999. The issues discussed during this chat apply particularly to breast cancer survivors, but also to other survivors as well.

Survivors become very aware of their mortality and often fear dying. This stems from the fact that they have been diagnosed with an illness that, depending on their situation, will, in the best circumstance, be treated as a chronic illness by many physicians and, in the worst circumstance, lead to their death. It is important in this situation to deal with the fear of dying by talking to somebody who will listen.  This may be a friend or spouse or it may be a therapist, a social worker, or other psycho-social or medical professional. I find that some survivors prefer talking with a rabbi, priest, or minister in this situation. In some sense, I think this person needs to be what I call at work, a brick wall, somebody who understands you but who will be nonjudgmental and, possibly, may just listen.

Survivors are entitled to grieve their losses. While many people don't initially think of cancer as bringing  losses to their own lives, it does. For example, cancer leads to changes which bring about losses, i.e., loss of control over one's body and one's life, loss of a sense of safety in life, loss of faith in a secure future. These losses need to be grieved, much in the same way we grieve the loss of a person in our lives, and woven into the fabric of the survivor's life.

The simple fact of surviving allows survivors to gain from the experience of the disease. Each survivor's gains are different. They may be  a different perspective on life; a new set of priorities as to what's important; a greater ability to live more fully and intensely; or treating what we have, for example, love or relationships, more carefully by focussing on what's precious to us rather than on what now appear to be trivial matters in light of our cancer experience. I found that some activities I'd participated in before I was diagnosed became fairly unimportant.  But, at the same time, I have found ways of replacing those activities with ones that I enjoy.  I also tend to cut to the chase much more quickly than I used to do before I was diagnosed when I'm confronted with choices to make.  I also don't go back and revisit decisions -- whether they're medical or non-medical.

Most survivors go through a crisis of identity. Particularly they ask: "Who am I now?"  They may ask, "Am  I still the person who helped raise four kids and loves my spouse?  Am I now somebody completely different who can't relate to my pre-diagnosis situation?  Now that I've finished treatment, can I be the same person I was before?"  All of these questions come up when we're trying to recover emotionally from our disease.  Part of the process of recovery includes fitting these questions and their answers into our lives.  How that process happens sometimes causes difficulties as well, because we have one identity to ourselves and different identities to others.  Suddenly, all these identities change and many of us have difficulty putting "Humpty-Dumpty" together again.

Survivors need to integrate the reality of illness into their lives without letting it control and dominate everything they do. Understanding how to do this will sometimes require either participating in a support group or the help of a psycho-social professional.  Having access to other people who have undergone the same experience means that most people can find a friend who is a little farther along the path to recovery to help them deal with specific issues as they come up. I found that being in a support group worked well although I didn't consider myself a "group person".  It's sometimes necessary to try several groups before finding one where you feel comfortable, but for most of us, it's worth the effort because it smoothes our emotional recovery after our physical treatment has ended.

Survivors need to have choices and maintain control over treatment as much as possible, through knowledge and information.  They also need to feel entitled to have choices and control. Often, when initial treatment is underway, people try to return to the invincibility that they may have felt before diagnosis. But, realistically speaking, this is difficult to maintain once treatment is completed because most survivors find that it necessary to integrate their treatment with their "life", what went before and what may come in the future.

Survivors are entitled to maintain hope. At the outset, that hope may be for complete remission of the disease. But, when survivors have a recurrence, they may hope for continued high quality of life, they may hope to see significant events in their children's lives, they may hope to return to a productive work life, they may hope to finish a project, they may hope to travel to a distant place. In any case, some kind of hope for every survivor is important.  Hope allows all survivors to move forward in their lives. Even when a person makes the decision to have only palliative care, that is, only care which will relieve pain at the end of life, a person should still have the hope of a peaceful end of life. For this reason, one really important issue for survivors is what we hope for changes as our lives change.

 Survivors are entitled to maintain and increase their self-esteem

• by being in touch with own resources, internal strength and resources that helped to survive
• by developing a life purpose or project to give meaning to life or by giving others the benefit of what we have learned from the experience

Survivors feel and are entitled to feel, experience, and express the entire normal range of emotions, from despair, rage, anxiety, pain of loss, to joy and exhilaration -- emotions that can be intense and gut-wrenching -- as does any one who is not presently in the process of diagnosis, treatment, or recovery. In fact, part of the whole process of integrating their diagnosis and treatment with the remainder of their lives necessarily must include experiencing and dealing with their emotions.  I believe that, when most patients are going through treatment, we frequently feel totally overwhelmed by the emotional aspects of our live and often put our emotional needs on a far back-burner.  This is an absolutely normal coping skill.  The important thing to understand is that, after we finish treatment, these emotions are likely to come back, and, with any luck on our part, more in proportion to our view of life.  At that point, we are also more able to deal with them on a reasonable basis and reintegrate our emotions into our lives as well.

Survivors have the right to NOT blame themselves for the illness or to be blamed by others. They also have the right NOT to believe that they can have complete control over its progression. Cancer takes many different forms. The specific cause of most cancers is not yet known. So, trying to identify what one individual did to "bring on" the disease is virtually impossible.  My own feeling is that spending time worrying about what I did or didn't to cause my cancers in the first instance takes away from the time I can spend doing other things, like balancing my checkbook, walking down my road, or getting information out to other members of our support group.  By the same token, when somebody says offhandedly, "You've beaten it," there are many times when I wonder what planet they've been on!

Additionally, at this time, none of the scientists and doctors working in oncology know why a particular treatment will work in one set of circumstances and not in another, apparently identical, set of circumstances. It's simply understood that a one particular course of treatment is statistically more likely to work compared to some other treatment without knowing exactly what influences a particular outcome. That means that there are no reliable predictors of which patients will do well on a particular course of treatment or which ones will not do well on the same treatment. So, it is also very clear that patients can be extremely frustrated by trying to achieve complete control over either the progression of their disease or even its successful treatment.  This frustration leads to unnecessary guilt, disappointment in ones self, and a sense of personal defeat which only adds insult to the injury of the cancer diagnosis.

Survivors remain sexual beings with the right to enjoy their sexuality as they and their partners wish. Some of the bodily changes that come about in the course of treatment may make certain activities difficult, but certainly it is possible to find other ways to accomplish the same objectives!  When a survivor is having problems with sexual issues following treatment, it is important for their relationship with their significant other to seek help in resolving the problem.

Survivors fear recurrence.  Unfortunately, this practically never goes away, simply because of the nature of cancer.  It does, though, gradually recede for most survivors.  Every once in awhile, usually just before a checkup, the fears come to the surface.  My own Reach to Recovery lady described this as an elephant.  She said that each of us has an elephant and most of the time the elephant stays in a small closet in our house.  But, from time to time, the elephant gets out and sometimes takes up the biggest room in our house.  The trick, she told me, is getting that elephant back into that small closet. I found that each person develops different ways of containing the elephant.  One technique that works for a while is to keep busy, but ultimately each survivor must confront the elephant.  All of us do this in different ways.

Survivors have the right to maintain connections to others.  But, survivors more than others find that they can cope with the fact of their illness better than some of their friends and family.  Some people in our lives will be so ill-equipped to cope that they will fall off our radar scopes.  That disappearance may be temporary or permanent.   Often, once they understand the extent of our illnesses and get over the concern of "doing something wrong", they find that we still want to be friends and that we still want to go shopping, see a new movie, watch a sunset at the beach, or go for a hike.  It's just that sometimes a survivor may necessarily have some physical limitations that restrict activities. But, our pooping out is not a reason for friends to go away; it is a reason to find other activities that we can do together. Sometimes it is necessary to start physical or emotional relationships on a different basis than existed before the cancer diagnosis.

Survivors experience survivor guilt, i.e., why did I live when another did not.  For the reasons discussed earlier about the causes and cures of cancer, it is often difficult to come to terms with survivor guilt.  It becomes, again, an issue of control and no person diagnosed with cancer can really control the course of the disease or the outcome of a treatment.  Often the best we can do is to take our best shot at conquering the disease, then cope with the fallout.  On this same topic comes the question of whether I deserve to live.  What none of us is ever likely to know is the why of any person's survival. When I was first diagnosed, I had a discussion with my oncdoc about survival and the fact that she believed I was setting out on a course of dealing with a chronic disease.  At the end of the conversation, I asked her how we would know whether I had been cured.  She said that I would never know because the only way to tell would be with an autopsy after my death.  So, I said to her, "I'll never know, right?"  That made me mad and, when I first began feeling survivor guilt, I revisited that conversation a dozen times or more.  The point is that we can never tell what the outcome will be.  So, feeling guilty to many of us becomes a waste of what most of us regard as a very scarce commodity:  the rest of our lives.

Survivors are glad to be survivors and to enjoy life.  At the same time, they may feel guilty about being glad as well as about being a survivor.  These are absolutely  normal feelings.  Every time somebody congratulates me on surviving, I get a feeling similar to going through graduation -- I've managed something that many people didn't think I could do.

Survivors have empathy and compassion towards others dealing with cancer.  We also come across a number of people in the course of our treatment who will not have the same outcome that we do.  Because we've shared similar experiences,  we frequently can offer help to those people as the course of their disease progresses.  For myself,  the overriding reason why I've become active in the inflammatory breast cancer community and in our high-dose chemotherapy support group, You Are Not Alone, is that I have learned so much from so many people that I feel obligated to pass the information along.

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