If Only All Cancers Were Treated Equal
May is bladder cancer awareness month! We’ve all been shocked by reading some of the startling statistics like bladder cancer is now the 6th most common cancer, and unfortunately, that number is increasing, especially among women. We hear that bladder cancer research is very poorly funded when compared to other cancer types. We see celebrities hosting events for different types of cancer, but I haven't seen any celebrity endorsement for bladder cancer, have you?
I never knew women could get bladder cancer
It started me thinking about my own bladder cancer journey and treatment. First of all, I hadn't really heard of bladder cancer – it was an 'old man's disease,' wasn't it? Women don't get bladder cancer; I had never heard of a woman with bladder cancer. Women got cancers such as breast, ovarian, or cervical. Or at least that was what I was lead to believe through all the various awareness campaigns. You hear “check your breasts regularly,” or "go for regular cervical smears," but never "check for blood in urine," the most common sign of bladder cancer.
I certainly wasn't aware that there were typical symptoms of bladder cancer, such as blood in your urine, having repeated, resistant UTIs, increased urination, etc.
Lack of information
As a bladder cancer patient, I felt somewhat alone. I had no knowledge of the disease, and moreover, I certainly wasn’t prepared for how big a deal a radical cystectomy was going to be. I initially believed it would just involve the removal of my bladder and the creation of a stoma placed near to my belly button. Sounded simple enough.
The reality of a radical cystectomy
The reality was somewhat different. Along with my bladder, I also lost my cervix, part of the vagina, appendix, ureter, and part of the small bowel, as well as a number of lymph nodes. The removal of all these parts sure has a massive impact. Not least the 12” scar from above my navel down to the groin! Plus, of course, I now had a 'bag' hanging from me. I had never seen a urostomy bag before. My tummy was swollen and I felt pretty ugly.
Seeking out a body image consultant
I started to look around to see what support was available for bladder cancer patients who had undergone a radical cystectomy. I was utterly shocked, and I have to say, quite upset about what I found – or what I didn’t find, as the case may be. A body image consultant was available – great! I was worried about how I looked and what I could wear now that I had my bag. Unfortunately, this service was only available to breast cancer patients!
Excluded from certain kinds of support
I then found an underwear advisor. Wonderful, I really didn’t know what briefs were best to wear post-surgery. I only found out by surfing the net that there are specialist underwear garments and suppliers for folks who have an ostomy. Again, as a bladder cancer patient, I was denied access to this service; it was only available for breast cancer patients. Why???
I found that bladder cancer patients were actually excluded from certain kinds of support. I felt that my cancer didn’t matter, that it wasn’t taken seriously, that my cancer and its life-changing outcome were irrelevant.
The final straw
I eventually found, while still in the hospital after my surgery, that I could have a reflexology session. The aim of the session was to help relax the patient. So, I booked a session with the reflexologist. The session was calm and relaxing, and I was really getting lost in finally being able to relax. That was until the therapist said to me, “I’m sorry you only get a 30-minute session; if you’d had breast cancer surgery you would have been entitled to an hour.” What?! I was shocked and horrified, yet again my cancer didn’t get the same recognition. I was furious and very upset.
Bladder cancer patients matter
My aim now is to be an advocate for and raise awareness about bladder cancer, so that no one ever feels like their cancer doesn’t matter. Bladder cancer patients do matter; we feel the same worries and fears as all other cancer patients and should therefore be treated and have access to the same services.
Have you any similar experiences of feeling that bladder cancer wasn’t taken as seriously as other cancers?
Have you talked to your doctor about navigating sex with bladder cancer?