This is my wish list for all cancer survivors across all types of cancer who struggle with cancer's emotional isolation.
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
Breast cancer isn’t exactly a lonely cancer. It is one of the more “common” kinds of cancer, yet whoever hears the words, “You have cancer,” regardless of the type of cancer, instantly feels alone. I remember getting my first cancer diagnosis on my phone at a gas station. I felt instantly separated from everyone around me, who, from my perspective, suddenly seemed to be going about their normal happy lives. I had no idea if they were happy or not, but that was how it felt to me. Sound familiar?
Cancer is lonely late in the evening when the worries keep you tossing and turning. It is lonely in the middle of the night when you can’t fall back to sleep. It is lonely in a group of people at work or at leisure that aren’t going through cancer. It is lonely shopping or sitting in a restaurant wearing a chemo wig to have the appearance of fitting in with the rest of the human race, but not really feeling the part. It is scary going in for tests, labs and doctor appointments and wondering if the cancer has spread, returned or gotten worse. Waiting for results can feel like torture. It is lonely when hair grows back after chemotherapy and people assume you are back to normal while you are still feeling anything but normal.
Any cancer diagnosis, regardless of the type, is a frightening and stressful thing; but does it have to be so lonely? Why is it such an emotionally isolating diagnosis? I mean, a support group, online or in-person, is awesome and I think everyone should have the option to connect in at least one. That said, sometimes I wish support groups were not always so geared to only a specific type of cancer. I get that different cancers have different treatments and specifics, yet I would argue that many of the feelings associated with a cancer diagnosis are very similar across all cancer types.
Sometimes there is an issue with the frequency of meetings, too. During active treatment, I wished my support group met more frequently than once or twice per month. As a cancer survivor now, I like the convenience of many of the online groups and I find I have a lot in common with the PTSD Facebook support group, too. For me, cancer was definitely traumatic, especially the first time.
Maybe cancer is an isolating diagnosis because it has the potential to kill us. A cancer diagnosis can instantly bring you and keep you face-to-face with your own mortality and that is not something that everyone else around you is experiencing. As I have written before, I think our society stinks at dealing with death and dying. So often it isn’t addressed or discussed, even though it is the looming fear in every cancer patient and survivor’s mind.
Here is my wish list. Let's ask oncology doctors to alert patients to the anxiety, depression and PTSD that sometimes comes with a cancer diagnosis and to suggest medications, oncology psychotherapists or support groups. Let’s talk about our fears of dying in the cancer support group settings. Let’s consider cancer support groups that are open to all types of cancer, and then maybe have breakout sessions by specific cancer types. Finally, let’s bring in speakers — including palliative care doctors, hospice nurses and estate planning attorneys. We could learn what is available for pain management and get help coping. Maybe these things would make a cancer diagnosis more approachable and less lonely. What are your thoughts