Everyone who has had lung cancer wants to leave cancer behind and move on to normal living. Some people succeed well with this.
Kathleen Houlihan ruminates on her experience:
A year ago today was the worst day of my life. I had had the biopsy the day before, on what was probably tied for being the second worst day of my life, the day my mother died, almost twenty years ago now. Then a year ago today, a Wednesday, my husband Holt and I waited all day for the results of the biopsy. When we hadn't heard by about 4:00 PM, we finally called my doctor, who called the pathologist and then called us back. Holt took the call, but I could hear the doctor tell him, "It's an adenocarcinoma. "
In talking with friends about my situation, one asked if I had been through hell this past year. I thought for just a minute and said that no, I had been scared as hell, but I really didn't feel like I had been through hell. I sure didn't feel very good for the whole month of April last year,
during the radiation. I was extremely tired all the time from the radiation, and I had pretty bad joint pain, along with some fevers and/or chills from the cancer (who knew fever and pain were symptoms of cancer?'), and those symptoms continued to a lesser degree throughout May, but that certainly wasn't hell. If I had had surgery, the recovery from that would have been hell, I'm sure. But without it, I haven't had very much in the way of physical discomfort.
Now I feel almost as good as I did before. I don't have quite as much energy as before, but otherwise I feel pretty much normal. And even though I am reminiscing about the events of a year ago, I can honestly say that today is one of the best days of my life. We just returned from a wonderful visit with Holt's family in Los Angeles-his four brothers and two sisters and their families, including eight of our nine nieces and nephews out there. We saw my father and brother and his son last month. We're in close touch with our local friends. And long-distance friends continue to visit. The dogs and cats are all doing well. I'm gearing up to plant a garden this year. Life is good!
So today I celebrate being a one-year lung cancer survivor. I intend to continue doing well, having one good day and one good year after another
Kathleen is also discovering new aspects of life to enjoy:
Speaking of turning to other matters, I've always loved music, but ever since I made a "C" in choir in the seventh grade, I've been resigned to the fact that I can't sing. Not! A couple of years ago, I came across a woman who says she can teach anyone to sing. That's nice, but I knew she couldn't teach me. Well, she can! After the appointment with my psychotherapist in Tulsa last month, I started thinking about what I was passionate about, and music was near the top of my list. So I decided to take singing lessons from Sue. At the first lesson, she had me start by singing scales (just on the vowel "ah") with her and the piano. As soon as I started, I could tell I was singing the right notes, and I started to cry. I sure wasn't expecting that! But Sue says it's not uncommon. I've had four lessons now, and I still cry some, but much less each time. I'm singing songs of my choice, beautiful songs I've always loved (Today, I Could Have Danced All Night, Cabaret, etc.), and it feels so good. I'm still far from perfect, but Sue says I have a "lovely" voice (she's a super cheerleader), and I'm doing so much better than I ever dreamed possible. I think it's the best thing I've ever done for myself
Many people, however, are able to force this difficult mental shift.
Some people succeed in blocking the experience entirely and immediately submerge themselves in their old life. This is a very healthy and useful form of denial, as long as one doesn't skip follow-up medical appointments. Some people succeed well in readjusting after their course of treatment, but cannot recapture this serenity if disease recurs and they face more treatment-s-even if their odds of survival after retreatment are promising.
Many people feel almost like their old selves until it's time for their periodic testing, when very strong fears resurface.
Abandonment
Some people fear the end of treatment because they feel that medical intervention and care are all thats standing between them and cancer. Often, people secretly feel abandoned by their surgeon, oncologists, or the medical staff at the end of treatment. To the emotionally charged survivor, the medical personnels behavior during a normal wrap-up appointment may seem brusque or emotionally flat. Where are the trumpets, the pat on the back, the teary eyes?
If, on the other hand, the staff was loving and helpful throughout treatment and congratulatory at the end, afterward you may miss the all-pull-together camaraderie that was shared and the special kindness you received.
You may fear the absence of regular and close physical scrutiny given by the doctor. The thought of waiting two or three months to the next blood test, scan, or other reassessment may seem like forever.
Karen Parles describes how she felt when treatment ended:
By far the most difficult time for me emotionally was after treatment stopped. I knew that I was at a high risk of recurrence, and I knew recurrence meant I would die from my disease. I looked well enough, so family and friends were reassured that I would be OK-they called and visited less frequently. Ironically, this is the time I most needed emotional support. One of my lifelines during this post-treatment period, was an in person lung cancer support group run by Cancer Care. The other survivors in my support group could relate to my anxiety over recurrence and provided comfort through their understanding. I remain vigilant about follow-up visits to my oncologist, but the only thing that truly relieves my worry is the passage of time.
Absence of feeling
Sometimes cancer survivors report feeling nothing at all when their treatment ends and their doctor says their chances are good that their survival will be a long one. This numbness may come about as a protective mechanism or from burnout. Most often, feeling will return with the passing of time.
Fear of relapse
Nobody can guarantee that you won't experience a relapse of lung cancer or develop a second cancer. In spite of many reassurances, its human to be afraid. Most cancer survivors have fears of relapse that range from occasional to paralytic. Often, the fears can be put to bed for months at time, but they may resurface when its time for a checkup or when an odd pain emerges.
Kathleen Houlihan describes her intermittent fears:
I've been kind of nervous lately because I am at the prime time for a recurrence. Most recurrences for lung cancer happen in the first two years, and I'm just short of one and a half years since diagnosis. So every time I have an ache, pain, or bump, or can't remember how to spell a familiar word a couldn't remember how to spell busy a few months ago-it's called "chemo-brain"), I think I'm having a recurrence, or a metastasis to the bone, or brain, or wherever: I no longer have the "just tough it out, ignore it and it will go away" attitude. I did that for seven months with the pain in my shoulder that turned out to be the lung tumor:
But now that I have the normal results from the AMAS test, I no longer suspect that I may have something "cooking" that could make itself known at any moment. I now think that I am really cancer-free. I know it could still come back, but I'm starting to really believe that it may not. So I intend to start seriously putting this whole cancer episode behind me and moving on.
I do want to put all the supportive information I have on a web site (if I can ever get around to itl), so I can share what worked for me with anyone who is interested, especially newly diagnosed lung cancer patients. But other than that, I don't intend to spend much time on things cancer anymore. As an almost six-year survivor of lung cancer says, "Don't let yesterday take up too much of today."
Fear of relapse is entirely normal. There's no known way to remove this fear entirely, but several ways to diminish these negative feelings might include:
• Learning all you can about your type and stage of lung cancer
• Keeping abreast of improvements in treatment
• Retraining your thinking to focus on the positive
• Maintaining reasonably healthy lifestyle habits
• Attempting to enjoy the small, free joys offered by each new day
• Giving up smoking, if you smoke
Vigilance
Many people experience pronounced, abiding concern about relapse when a new ache or odd body trait is noticed. Fears of relapse are, of course, perfectly normal, and you're to be commended for monitoring your body's reactions and status. You're not a hypochondriac.
Battle fatigue (post-traumatic stress reaction)
Some people experience insomnia; nightmares about their cancer; fear and avoidance of doctors and hospitals; jumpiness or lack of trust during common interactions with medical personnel, such as annual influenza vaccination; or extreme anger or sadness when hearing of someone else with cancer.
Ruminations, doubts
Once the heat of the battle is past, some people may begin to recall survival statistics they've seen. You might become less than happy with what you perceive your odds of surviving to be. You might begin to second-guess whether what you went through was worth it, whether it was the right treatment choice, whether you'll ever be physically adept again, whether anything else in life is worth doing in comparison to battling cancer.
Diminished coping skills
For such a long time, all that was expected of you was to focus on beating cancer. Now it may seem that the rest of the world expects you simply to pick up where you left off with your normal responsibilities. For those who were not able to continue working throughout treatment and who have not retired, the thought of returning to
a full workload of regular responsibilities can be overwhelming. If your breathing is not as good as it was, you might feel tired most of the time, even when physical effort is not necessary.
As you attempt to re-enter your wider world, you may notice that things that you used to be able to ignore may annoy you or things that used to annoy you may anger you.
Anger
Now that the time- and energy-consuming process of being treated is behind you, you may find that you're feeling angry about having cancer. You may find that you want to learn all you can about what causes lung cancer or that you want to become politically involved to force legislation that favors cancer research or cleanses the environment of carcinogens.
If you've quit smoking, seeing others smoke might infuriate you.
If you still smoke, you might become very angry if anyone mentions quitting smoking in your presence. You might feel that you've been through enough and you just want to be left alone to enjoy life as you see fit.
Longing for the past
Some people expect and hope that they'll feel and perform exactly as they did before cancer became a problem and are disappointed if they cannot. Sometimes the recovery of physical and intellectual stamina is a slow process. If you need supplemental . oxygen support, you may have periods during which you're convinced life will never be the same. At times, you might perceive that all changes or a diminution of performance are cancer-related, when in fact they might be attributable to a number of other things.
Excessive caution
Some people feel that the gods would frown on pride if one celebrates at the end of treatment, so they avoid jinxing themselves by celebrating. They may spend years afraid to enjoy a return of reasonably good health.
Alienation and loneliness
People who haven't had to deal with cancer may strike you now as insensitive or shallow. Those who have had cancer, but not lung cancer, might seem unable to understand the stigma or the prognosis you feel you're facing. The vacuous things others say about your cancer experience or their inappropriate curiosity might leave you astonished or hurt. The everyday topics they want to discuss may bore you. You may find the issues that they view as problematic trivial. You may feel you no longer have anything in common with old friends, nor even with loved ones. You may begin to consider a job change or a divorce.
If you've recently given up smoking, friends who still smoke and know of your illness might be ill at ease around you, or might avoid you-or you them.
Altogether, you may feel out of phase with the rest of the world-until you meet a fellow lung cancer survivor, and a long, intense conversation follows, during which you're impervious to your surroundings, perhaps sharing funny stories about your experiences that healthy people would find morbid. Suddenly, you're aware you're not alone and that cancer support groups may be a good choice for you.
Watchful waiting
Those with slow-growing types of lung cancer that are monitored for long periods, with no treatment but "watchful waiting" and those with ambiguous test results, face special circumstances. Retesting at some future date will be necessary for clarification. The intervening time may be filled with unbearably obsessive worry about the possible failure of treatment, sleeplessness, crying, lack of concentration, and other extremely uncomfortable feelings.
Anxiety and depression
All of the above, combined with the physical toll of treatment, often result in anxiety or depression for many people. Anxiety and depression are discussed more fully in Chapter 15, Stress and Stress Reduction and Chapter 16, Getting Support. A counselor who specializes in cancer survivorship can help you with these and other problems.
Social and professional aftereffects
You may be quite surprised to discover that those around you who have never had cancer are totally unaware of the mixture of feelings you're experiencing-that, in fact, they may have a very full agenda of their own feelings, both happy and distressing, to sort out. Conversely, you may find that cancer survivors are a tremendous resource to you in this stage of your adjustment.

