Coping | Ostomy
I am surrounded by people wearing “No One Fights Alone” buttons. I can feel the love and support in the room and am overcome with emotion. The day before my radical cysectomy, my work colleagues all wore buttons in support. It was a lovely gesture and meant so much. “No One Fights Alone” is a wonderful sentiment, but is it true? As I faced death, surgery, and a life with a urostomy, I felt alone. Every person wearing that button would be going back to their normal lives. Mine would be forever changed. OK. Enough with the pity party. It wasn’t as bleak as it sounds and I am okay, but it took a while to get here – and I definitely wasn’t alone.
I was diagnosed with bladder cancer in July 2018. As anyone with a cancer diagnosis can attest, the news is devastating. Life becomes a whirlwind. Doctor appointments, scans, and surgeries fill your calendar. You almost don’t have time to dwell on your future. But at night, when sleep eludes you, you cannot help but think about what is to come. Nights were the worst for me. I was exhausted but couldn’t sleep. My thoughts were dark and my fears, things I was able to cover during the day, came to the surface. This is when I felt most alone and helpless. As many as half of cancer patients have sleeping issues. Just having bladder cancer can make it difficult to sleep through the night. Frequent urination is a symptom. Lack of sleep can definitely affect your mental health. There are many things you can do to help with sleep problems and your doctor is an important resource.
So many of the fears and regrets that come with a cancer diagnosis revolve around your children. You can’t help but think about what you might miss: graduations, weddings, births. I am lucky in that my children are adults. I didn’t have to worry about who would take care of them if I died. The thought of leaving them still makes me incredibly sad. You feel like you have to be strong to protect your children, even if they are adults.
The week I found out I had cancer, I found out my son and daughter-in-law were expecting our first grandchild. What should have been happy news added to the fear. Would I be around for the birth of my grandson? To this day, I regret that my diagnosis took away what should have been the most joyful time of their life. As I said, you feel like you need to always be strong for your kids. I was able to talk to them about my fears about the future, my treatment, etc. I am a very open person and was able to talk about these things with my husband, siblings, and friends as well. I reached a point after my radical cysectomy surgery, where I did not want this to be our only topic of conversation. I was sick of talking about it and I am sure they were too. It was at this point I decided I needed to speak to a professional.
Finding a counselor actually was harder than I thought. I first called the hospital where I had my surgery. I was still seeing my doctor here as well as the ostomy nurses. I thought they would have service providers who could help. I was wrong. There is no one who is affiliated with the ostomy clinic. In fact, the hospital said it would be at least six months before I could get an appointment with any counselor. I then reached out to the cancer center where I first met my team. They advertise comprehensive, whole-patient care. I found this to be somewhat untrue. They did not have a counselor affiliated with them who could help me. What they did share was a valuable tool that I have shared with many people.
Psychology Today has a “Find a Therapist” page where you can put in your zip code and find a therapist! You can filter results to find someone who takes your insurance, specialties, gender, etc. I was able to find someone local who concentrated on treating cancer patients. Being able to talk to someone, who was paid to listen to me, was life-changing. I did not have to burden my family with my needs. It helped with our relationships. I could be the wife, mother, and friend I wanted to be.
Sometimes you do feel alone. As much as people want to help, they are not the ones going through what you are going through. What I learned is that, even if you feel alone, there are people in your life who want to help. I am lucky and have an amazing support system. I know not everyone has that. Please know there is help out there, but you must be willing to ask for and accept it. Don’t be afraid to seek help from a professional. It really is quite empowering having someone who has to listen to you.
In closing, I can’t let the month of May go by without mentioning Bladder Cancer Awareness. Over 19,000 women are expected to be diagnosed with bladder cancer this year. Typically, their prognosis is more dire because of the length of time it takes to get a proper diagnosis. If you see blood in your urine, have changes in your urinary habits, or have UTIs that keep recurring, ask your doctor to check for bladder cancer. It could save your life. It saved mine.