When you gather colorectal cancer survivors and a current patient together it is always heartening, and at times heartbreaking. The survivor voice can be muffled when the discussion turns to the current quality of their lives. HCB2 wanted to hear their full stories. Four colorectal cancer survivors and one current patient share their experiences with the goal to shed light on their experiences as they moved through the cancer journey and continue to recover.
All five share deeply personal commonalities; however, their outcomes vastly differ. We discussed several topics including:
• Cancer diagnosis
• Faith
• Cancer treatment
• Surgeries
• Impairments
• Finances
• Relationships
Cancer Diagnosis
Timely screening increases survival rates, and the group shared that each one had a delay in screening and diagnosis. Group members shared they were experiencing GI symptoms, yet the symptoms were disregarded by themselves and/or the medical community. The group agreed people are waiting too long to schedule their screening for colorectal cancer. Research shows the number one reason people do not receive timely screening is because their doctor did not make a screening recommendation. The importance of self advocacy is critical.
Faith
Each group member believed their faith helped them to “survive” the treatments. Some stated their faith became stronger while others remarked how their faith returned after diagnosis. Specific prayers were answered, and prayers were used as an inten- tional coping strategy. Others returned to church services as the institution offered great support through active involvement, and the spiritual support helped to “refocus life”. The group could not imagine going through a cancer diagnosis and having to make treatment decisions alone. Faith provided that foundational strength and opened oppor- tunities for support when they needed it most.
Cancer Treatment
The treatment offered to the group was very similar, and seemed to be the basic stan- dard of care. No member participated in a clinical trial. During the treatment stage of their cancer journey, the survivors made different choices as far as surgeries. One opted not to have surgery, and another has had 16 surgeries due to complications. Some are ostomates while several are not. All of this has led the group to have very different out- comes, indelible body changes, and lingering impairments that currently challenge their every day lives.
Impairments
Though each one received the typical “standard of care” during the treatment, the ramifications of their treatments differed. Impairments range from severe neuropathy to tem- porary and permanent ostomies. One survivor stated he is not challenged with physical or mental issues after his stage three colorectal cancer diagnosis. Another survivor is left with severe scarring due to 16 surgeries.
All but one had physical impairments that challenged them each day. Adjusting to the impairments takes work physically and mentally. Temporary challenges during treatment such as weight loss, loss of strength, brain fog, and fatigue are common. Adjusting to permanent physical changes such as neuropathy, lymphedema, balance and gait issues, muscle imbalances, and living as an ostomate pose deeper challenges.
In particular, one survivor faced significant changes living with an ostomy bag, and shared the following: “An ostomate experiences the convergence of both mental and physical impairments because there is a period of mourning. Mourning the former life you lived without having the challenges an ostomy brings. Simple tasks remind you of being different. Daily dressing decisions are different. Intimacy is different. Friends & family treat you different. You ARE different.”
Along the same lines of the body undergoing reconstruction, a survivor shared the damage done from the radiation, chemo and surgery has been extensive. She shared the list of life-altering changes:
An ostomy, a complete hysterectomy, vaginectomy, muscle harvesting from thighs and scarring from skin grafts, a hernia, and suprapubic catheter. Still continues with a port-a- cath and is on blood thinner due to a pulmonary embolism most likely due to the chemo treatments. Her self-esteem plummeted with the ostomy and hysterectomy and she shares, “Her body was never the same again and this realization is enormous.”
Finances
The financial impact of cancer treatment can also have long lasting effects on the pa- tient’s mental health and on the family. Medical debt often leads to a high level of stress not only for the cancer patient and survivor, but also for the family as the cost of treatment has profound impacts on overall wealth and future opportunities. Quality health insurance can temper the heavy effects of this stress, but many lack such comprehensive coverage even when insured.
Studies show 47% of cancer patients face medical debt. A few in our survivor group were very grateful to have health coverage. One had four insurance plans within 18 months and continually had to review and pay medical bills. Another survivor described how the ongoing follow up surgeries are only partially covered, and she understands she will be paying medical bills to 12 different ac- counts for decades due to the accumulated large debt. Another group member shared he had calculated the cost of his treatment and determined the total was around $700,000. He was very grateful for his “good” insurance.
Relationships
Relationships can be unstable during the cancer journey, and especially within the col- orectal cancer journey. Some friends or family may be uncomfortable with the area of the anatomy affected or with the thought of cancer in general. Understandably, cancer patients and their loved ones are often left feeling overwhelmed and uncertain when faced with a cancer diagnosis. Over time, this has led several of the group members to grow more patient and tolerant with others and with the way they live their own life.
Often times the cancer patient is placed in the role of having to console well-meaning friends and family, which can be exhausting and can lead to them feeling alone in their journey. The group shared that just a squeeze of the hand and having a person beside you can bring much support. Sometimes there are no words that can capture the pa- tients or caregivers vast array of emotions.
Additionally, it is common to feel a sense of responsibility to hide or diminish the actual pain, loneliness, and/or frustration during the cancer experience. Frequently friends and family state how these survivors are an inspiration, but we really have no idea how their daily walk is experienced. One survivor feels she is underserving of the ‘you are an in- spiration’ comments. She quietly states, “I have simply kept going because I am supposed to and don’t know any other way.” Her motto – “ Prove them wrong”. Cancer has presented this purpose in her life.
One survivor stated that “For me, I felt colon cancer defined me and my relationships for a period of time which I believe to be normal. It’s understandable that family, friends, neighbors, employers are all going to treat you differently while undergoing cancer treatments. In most cases, those around you rally and care deeply for you and show this in many supportive ways. It feels so good knowing you’re so cared for.”
Summary
The group agreed cancer can bring blessings and strengthen relationships. The diagnosis made each survivor stop and take notice of what’s really important in life. They encourage friends and family to make supportive gestures with no expectation of a quick response. Navigating each day takes all of their focus and energy.
Lastly, finding a support system that can help buffer the physical, mental, and emotional challenges increases the network of support from those who have literally walked the journey. Overall, the hardships and mental isolation can be eased by reaching out. All the survivors want to help others, want to share their story, want to stop colorectal can- cer from taking away so many loved ones and so many freedoms in survivorship.
HBC2 sees the human body as an extraordinarily resilient and determined living organism. Through these conversations we are seeing the human spirit in the same light. This spirit of survival is exemplified through a group member’s statement, “I’m still breathing. So, not every lasting effect has been a bad thing.” True survivorship at its best.
Contact HCB2 if you are looking for resources and a support network. No one should go through the cancer journey alone. Reaching out is the first step.