The TP53 gene provides instructions for making a protein called p53. This protein acts as a tumor suppressor, which means that it regulates cell division by keeping cells from proliferating too fast or in an uncontrolled way. Mutations in TP53 gene result in an altered p53 protein that cannot regulate cell proliferation effectively and is unable to trigger apoptosis in cells with mutated or damaged DNA. As a result, DNA damage can accumulate in cells. Such cells may continue to divide in an uncontrolled way, leading to the growth of tumors. This is cancer simplified in brief and I am not here to discuss its further physiology which is too complex to understand. What I am here to do is to make you understand how life is during and after cancer.
Life during cancer
The time during cancer diagnosis is very stressful. Many people with cancer divide their lives into the period “before I got cancer” and “after the diagnosis”. Today, cancer is common, but living with the disease is the biggest challenge the patients have ever faced. It can change routines, relationships, it can cause money and work problems, it can change the way you feel and look. How someone feels physically and emotionally with cancer can vary from day to day. When you ask someone with cancer how they feel, they may hesitate to answer. Some of the hesitation may be wondering if they should tell the truth lest they receive a lecture beginning with, “you need to stay positive”.
It is scary to live with cancer. It doesn’t matter whether it’s lung cancer or blood cancer. It doesn’t matter if its stage 1 or stage 4. Being diagnosed and living with cancer is terrifying. Even amidst a loving family or in a crowd of friends, cancer is lonely. Very lonely.
Cancer isn’t a sprint, it’s a marathon, but the marathon doesn’t have a finish line. With the exception of some blood-related cancers and some very early stage solid tumors, most cancers cannot be cured. Even for cancers that are treated aggressively, there remains an ongoing risk, though sometimes small, that the cancer could come back (called cancer recurrence). A cancer survivor said – “My body feels like it is dying from the drugs that are meant to save me”.
Life with cancer can hurt. Cancer can be painful but that hurt is not always visible to someone on the outside. Pain can cause irritability. That irritability, in turn, can make someone say negative things which they won’t say otherwise, or do things which they won’t do otherwise.
Life with cancer changes everything. What changes in the life of someone with cancer? A better question would be, “what doesn’t change in the life of someone with cancer?” The simple answer is absolutely everything. Friends change, our roles in our families change, our goals change, our priorities change, even our values change. Studies even tell us that cancer changes people in several positive ways. Nobody with cancer would choose this journey. Yet, along with all of the changes and the multitude of rocky emotions, life still carries meaning and joy. If you have a loved one with cancer, hang on through the down times. You might just get a chance to experience the up times.
Life after cancer
When cancer treatment ends, people begin a new chapter in their lives, one that can bring hope and happiness, but also worries and fear. Each person has his or her own way of coping and learning to manage these emotions. It will take time and practice. You will probably be concerned that the cancer might come back, and you might find yourself thinking about death and dying. The fear of cancer coming back is common among cancer survivors and can sometimes be quite intense. Going back to normal isn’t easy. Maybe you’re more aware of the effects the cancer has had on your family, friends, and career. You may take a new look at your relationships with those around you. Unexpected issues might also cause concern. For instance, you might be stressed by financial concerns resulting from your treatment. Some people are better prepared for life after cancer than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups or others.
The end of treatment is a cause for celebration and a time of uncertainty and fear. The end of daily, weekly or monthly medical visits can leave patients feeling as though their safety net has been removed. The emotional support that patients receive from those around them may shrink once their cancer is gone. Surgery, chemotherapy and radiation may be over, but treatment is not; patients still require regular scans.
Pain, neuropathy, fatigue, mental fogginess, physical restrictions and other side effects often last long after treatment is completed. After months or years of focussing on cancer, survivors can struggle with a sudden loss of structure and purpose. Physically or metaphorically, cancer patients have lost pieces of themselves.
Scars, hair loss, skin changes, bloating, weight gain or loss, medical devices such as intravenous ports or ostomy bags, and other changes in appearance frequently have a negative effect on body image. The physical and psychological effects of treatment can cause lasting intimacy issues, both physically and emotionally.
It is very hard for cancer survivors to find their “new normal” but it is not impossible. You just have to stay strong and never give up. Life is worth living. There is life after cancer.
—The writer is an MBBS student at Tehran University of Medical Science. [email protected]