Conversations about Survivorship
With cancer survival rates steadily rising over the last few decades, you would think that discussions with patients and survivorship information would be just as relevant and available as information about cancer prevention and treatment is. This is sadly not the case.
The information I was given
When I was diagnosed, I was determined to beat the diagnosis, evict bladder cancer from my body. I was given information about treatment and what to do throughout treatment. Who to contact with financial issues and rides to or from treatment. What organizations had support groups and where they were located. I was even given information about speaking with a therapist that worked with my oncology group and specialized in treating cancer patients.
What about cancer survivorship?
I was bombarded with information that was relevant to the immediate point in time that I was in. I was given absolutely nothing about survivorship at any point in my journey.
I live in a city where there is actually a Cancer Survivorship Center and was never given any information. NEVER.
At first, I didn't have the energy to see the therapist
In fact, I did not even contact the therapist that works with my team until after my treatment was over because she was located across town from me, and I barely had enough energy and strength to make it out of my second-floor apartment to and from my treatments, let alone extra appointments. It was several months into my sessions with her that I first heard the word "SURVIVORSHIP." It stopped me in my tracks and I wasn't sure how to respond to her.
I started to research survivorship
Over the next several sessions, we discussed survivorship more. I journaled about it. I looked for research about it. There was just not very much out there. There are organizations dedicated to cancer survivorship, and I had never heard of them until I started seeking them. Most of the survivorship research is being done in Europe. I was disappointed with what I found, but that did not deter me.
Reaching out to learn more
I began receiving e-newsletters from the organizations, reaching out to some of the researchers, looking for survivorship studies to participate in, and attending virtual presentations about cancer survivorship. Of course, nothing was bladder cancer-specific because, as we know, it rarely ever is in the first place. Yet, it was all a start.
Many sites about various cancers group patients and survivors into the same category, but most of the issues we face are not the same. I have found that it is important to use our own voices, experiences, stories to spur the oncology field to do more research and offer more services to survivors.
We don't just go back to "normal" after cancer
More must also be done to educate the general public as well. Employers should not make survivors return to work immediately and should make concessions for slowly reentering the workforce or even working from home. After all, as we have learned this year, most jobs really CAN be done virtually now! People should understand that just because active treatment has been completed and we have been deemed "cancer-free," it does not mean that we are back to the way we were before our diagnosis. Many cancer survivors suffer from permanent side effects, anatomy changes, medical PTSD, depression, chronic pain, and other health issues. In fact, some of these issues can cause or significantly affect secondary diagnoses and may require different approaches to treatment for other diagnoses.
Support for life after cancer
It is no longer enough to get us through cancer. We need support, education, and services beyond that.
If you are interested in learning more about cancer survivorship on your own, you can search the web for the work of Marike van Leeuwen, Ph.D. in the Netherlands or check out one of the American non-profit organizations below.
In addition to educating yourself about survivorship, be sure to have conversations with your oncologist, urologist, and primary care doctor about survivorship. If you are having other health issues and they are not being impacted by typical treatment options, ask your doctor to look into the possibility that your cancer survivorship status may be affecting your body's reaction to the treatments.
Change will only come if we are vocal about the needs we have as survivors.
Have your views towards bladder removal changed since you were diagnosed?