Life with Non-Invasive Bladder Cancer: Interview with Bladdergraffiti
Hearing the words "bladder cancer" automatically conjures up images of...graffiti? That was the case for the Germany-based blogger behind the website Bladdergraffiti which focuses on life with non-invasive bladder cancer.
We reached out to Bladdergraffiti to learn more about her experiences and what inspires her to share her story. Check out our conversation below!
Alina: When and how were you diagnosed with bladder cancer?
Bladdergraffiti: On January 2, 2016, when I noticed blood in my pee, I assumed it was an infection. I hadn’t really heard about bladder cancer. I was puzzled that it didn’t hurt. The second time it happened, the same day I was alarmed enough to go to the emergency medical center nearby. Maybe I was lucky that day as the woman doctor on duty took it very seriously; she gave me antibiotics and urged me to follow up with a urologist as soon as possible. Two weeks later, I saw a urologist for an ultrasound and cystoscopy, and I had my first TURBT operation a week after that. I was fearful before the cystoscopy and almost relieved when we saw the tumour. I knew something was awfully wrong, and I was eager to have it “fixed,” though I now know it’s a long process and not a quick fix.
Starting a bladder cancer blog
Alina: What led you to start documenting your experiences?
Bladdergraffiti: When I was first diagnosed, I was eager to read everything and know everything about the disease and what to expect. The forums and resource sites were extremely helpful, but I still had many unanswered questions. How long would recovery take? When would I be fit again? What could I do to help myself? What strategies worked to keep it away? Blog posts I followed were good and supportive, but I still had a bladder and wanted to keep it, if possible. I started thinking about writing short posts about my journey with non-invasive bladder cancer, covering the kind of things I’d been looking for. Then when I hit the 3-year mark and I had my second recurrence, it seemed like the perfect time to start. I started writing to help me process it all – if it helps someone else on the way, then that’s a bonus!
Alina: You have written about bladder cancer starting, middling, and ending with “pee problems.” Can you share a bit about your experience?
Bladdergraffiti: When you have bladder cancer, everything is about that muscular organ that everyone else takes for granted. You always need to find a loo; you always need to plan journeys or outings keeping that in mind. After treatment - chemotherapy, a cystoscopy or operations - the frequency increases, and often, it’s better to stay at home so you’re not caught out. There’s nothing worse than a long line in the ladies' room when you get the urge to go, or being on full public transport. I don’t think this symptom is ever going to go away, although it does get better as time goes on from the last chemo treatment. Currently, I’m on monthly chemo treatment, and it’s not really clear what will happen at the end of this maintenance program in 7 months; it depends on staying "all clear". Even then my urologist mentioned a “break,” implying also a continuation.
How does graffiti relate to bladder cancer?
Alina: You use graffiti to illustrate each of your blog posts. What inspired you to share this particular form of art, and how does it relate to bladder cancer?
Bladdergraffiti: I’m a visual person, most people are; I understand and remember things through images. The first glimpse I had of a tumour of mine, I was struck by how pretty it was. I always imagined a tumour to be ugly. This one looked like a sea anemone and also just like an edelweiss flower - literally across the road from my urologist’s is a wall mural “The Edelweiss pirates” - they were a resistance group against the Nazis, and 13 were executed on that very spot in 1944. It seemed apt to combine cancer and graffiti: both are somehow symptoms of heavy industrialization and getting away from nature. Graffiti is beautiful, and it’s a hobby of my partner’s to take pictures of it. I wanted to include him in my project as he’s been unfailingly supportive.
What resources are out there?
Alina: What are some resources that you have found helpful in your journey that you would like to share with the community (apps, websites, etc.)?
Bladdergraffiti:There are different kinds of resources: the ones that guide you through understanding the illness and ones that focus on improving overall health. I believe it’s important to explore both that patients need to be active in their own health. Improving health and well-being, both physically and mentally, puts us in a better position to fight cancer. Websites and forums such as this one are particularly valuable when first diagnosed, and whenever there’s a change in circumstances- recurrence, therapy or results. But if you look after your well-being, too (sleep enough, reduce stress, eat well, and drink plenty of water, then the day to day is better, and you can manage bad news or setbacks more easily. Obviously, it’s easier said than done, but daily habits add up. See my blog posts "Pearls of wisdom“, “Go bananas,” and "Pee problems part 2" for more information, and other resources I use below:
Understanding the illness
- Fight Bladder Cancer
- Bladder Cancer Advocacy Network
- The book Anticancer: A New Way of Life by Dr. David Servan-Schreiber
- Dr. Kelly A. Turner’s book “Radical Remission” and website
- Toilet Finder, a phone application
- Kris Carr of “Crazy, Sexy Cancer” fame
- Dr. Greger’s book “How Not to Die” and his website
- Meditation using Headspace
- Yoga using the GottaJoga app
Thank you, Bladdergraffiti, for sharing your story with us!
How long did you wait before telling others about your diagnosis?