"During my illness, I was the strong one for my friends and family, always the one with the positive attitude. But after treatment, I lost it. I really fell apart. I fluctuated between being angry and terrified that I would die, and happy and grateful for being alive. These big emotional changes drained me and left me wondering what was happening to me." -- Lynn, 48 years old, leukemia, 2-year survivor
As quoted in Picking Up The Pieces, p.109
It's Thursday, 9-Sep-2006, the day after my 6th chemotherapy treatment at the Grand River Regional Cancer Centre. I have what is "affectionately"? called my baby bottle in my left pocket with a tube extending from it up my shirt and then down my shirt sleeve of my left arm connecting it to my PICC line. The bottle automatically dispenses 5 ml/hr directly in the veins close to my heart. The medication then flows through the entire body in the bloodstream and then, within a few hours, is absorbed into tissues. It then targets fast-growing cells in the body like those in the gastrointestinal tract, the mouth, white blood cells, platelets, neutrophils, etc.
What I'm feeling today is partially related to my expectations for what the 5-FU infusion will eventually do to my body, especially over the course of the weekend when I'll be fatigued, probably nauseous, and suffering diarrhea. This entails feelings of loss of control, anxiety, uncertainty, and frustration.
But I find myself anticipating the end of treatment, not only the physical side effects which will continue indefinitely, but the emotional impact of no longer having emotional support from nurses at CCAC (Care Partners) and the GRRCC nurses, supportive care coordinators, nutrionists, and oncologists. At least that will be the case on a regular basis; there will undoubtedly be the followup sessions and telephone consultation, should I need the latter.
Even friends and family will be less available, simply because the natural response to the end of treatment is that they will consider me either "cured" or in remission (that is the term preferred by oncologists who cleary speak of cancer now as a chronic disease, one managed rather than cured). I will also appear physically to them to be looking pretty good. I've lost weight, and unless I pull open my shirt and tug my pants down a bit, they will never see the lengthy scar on my abdomen.
In some ways, after the shock of the initial diagnosis, I have been strong emotionally. Part of that strength is bolstered by the incredible level of structured and casual support I have received during treatment. But now as I am only weeks away from "graduating", I feel more and more like Lynn. I anticipate the emotional rollercoaster with only my wife and a few friends who have experienced colorectal cancer to be available for regular support.
Perhaps this is a good time to reconsider using the services of our local cancer support groups at HopeSpring. The problem with their services and programs is that they are almost all scheduled during the work day when professional facilitators are readily available. My employment responsibilities are too important to me both financially and emotionally to consider daytime support groups.
So, I'm left with books, online help, and you! I do hope that some of the colorectal cancer patients in the region and elsewhere will feel free to contact me via email. Perhaps we can start up a support group in the region specifically for colorectal cancer survivors (and those undergoing treatment). We need each other both during treatment and in the recovery transition phase.