Cancer Survivorship Themes:  Managing (unrealistic) expectations of self and others

Beginning with the July issue of YaleCares, we have been exploring common themes identified in survivors who attend the Connecticut Challenge Survivorship Clinic at Yale cancer Center.  We end the series with this month's issue.  There are many more issues presented by survivors, but the purpose of this series has been to illustrate some of those that are very common and to highlight the interdisciplinary approach taken by Clinic staff. 

Our final theme is Expectations: assumptions about how the survivor is "supposed" to be after cancer treatment.  As with the other themes described, this one presents in various ways:

• My family/friends are ready for me to be "over" cancer.
• My boss expects me to pick up where I left off 6 months ago, as if nothing had happened.
• My husband has been great-but he's getting impatient for things to get back to the way they were.
• I've tried to shield my kids from all of this, but my defenses are wearing thin.
• I thought I'd be back to normal by now.
• My surgery was months ago - why am I so tired (or still in pain)?
• The things I used to enjoy seem irrelevant now.

This theme overlaps with some of the others presented.  It represents a yearning for the comfort of what was believed to be predicable and "normal" in the individual's life before the cancer diagnosis.  Now that the crisis of diagnosis and treatment is over they want to not only be cancer-free but also free of cancer.

Our clinicians address this issue in a hypothetical survivor:

APRN:  Even though you finished treatment a few months ago, it would be unusual to have completely recovered from the treatments.  Treatment for cancer takes a physical and emotional toll that normally requires many months of recovery.  Some of the effects will not "go away" on their own, but require focused attention and sometimes the help of one or more professionals.  The issues will vary over time and may include fatigue, deconditioning, difficulty with memory, sleep disturbance, sexual desire or functioning, weight gain or loss, and so forth.  Stress, anxiety, and depression are very common in survivors.  Relationships with family members, friends, and co-workers are very likely to have changed during treatment.  In addition to physical rehabilitation, acknowledging that there will be a "new me" and new life circumstances is a part of recovery. 

Social Worker:  Communication is key, both verbal and behavioral.  It is important to speak to family members, expressing your reality.  Perhaps you are looking like you did before cancer externally; yet, this is not your internal reality.  It is also important to express your reality in action, as well as words.  If you are not up to a task, don't do it!  Remember, too, that your loved ones are also experiencing a loss-the old you, and the comfort of a healthy you in familiar family roles.  Working out this new reality requires open communication.  It might be useful to have a professional help facilitate the adjustments or to help the family develop new communication skills.

Physical Therapist:  If you exercised or were very active prior to your cancer treatments, it can take months to fully get back to your prior level of fitness, even if you "look like your old self."  Strength and stamina return slowly.  You may have had treatments that have long term effects that inhibit certain body functions (i.e. radiation treatments that scar the lungs, breast cancer surgery that limits range of motion in your shoulder), so you may not be able to fully get back to your prior level of activity.   

Being able to explain your current limitations may be helpful.  Telling people that you have a series of mini-goals or steps to get to a larger goal helps them see that you have thought the process through; it also holds you accountable to achieve these goals in order to make your ultimate long term goal.

If you need help getting your strength or endurance back, you can consult with a personal trainer at a gym.  If you are experiencing a reduction or loss of range of motion, lymphedema, or other chronic condition as a result of your cancer treatments, you can seek the professional advice of a physical therapist, lymphedema certified therapist, or a licensed massage therapist.  These professionals will be able to help you develop a plan to address barriers to your exercise plan.  Have a plan in your head (putting it down on a calendar or your Blackberry is better) and having a series of short-term, doable goals is a great strategy for mental and physical fitness.

Registered Dietician:  To continue in the spirit of the words of the social worker, you may not be able to, nor may you want to carry on your familiar family role regarding food shopping, meal planning, and cooking. The recommended predominately plant-based way of eating does not require you to prepare a special meal for yourself and a different meal for the rest of your household. All members of your household will benefit from this way of eating. Again, communicate your needs. Enlisting the help of members in your household will help you all adopt new ways of healthy eating over time.