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If Only All Cancers Were Treated Equal

So May was bladder cancer awareness month. We’ve all been shocked by reading some of the startling statistics, such as “bladder cancer” is now the 4th 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?

My experiences

It started me thinking about my own bladder cancer journey and treatment.

Firstly, I hadn’t really heard of bladder cancer, it was an old man’s disease, wasnt it? Women don’t get bladder cancer; I had never heard of a woman with bladder cancer. Women get cancers such as breast, ovarian, cervical. Or at least that was what I was lead to believe, through all the various awareness campaigns. You hear “check your breasts regularly,” go for regular cervical smears.

I certainly wasn’t aware that there were typical symptoms of bladder cancer, such as blood in your urine, having repeat, resistant UTI’s, 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

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 along with 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 “bag” before.

My tummy was swollen and I felt pretty ugly.

Support

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 on what I found, or didn’t as the case may be.

A body image consultant was available, great! I was worrying about how I looked and what I could wear, now that I have my bag. Unfortunately this service was only available to breast cancer patients!

Excluded from certain kinds of support

I found an underwear advisor, wonderful, I really didn’t know what briefs were best to wear. 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, 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 it’s life changing outcome was irrelevant.

The final straw

I eventually found, whilst still in 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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Anita Brown moderator
    9 months ago

    Everyone seems to think that with Bladder cancer, you aren’t as affected by things as you would be if it were breast or cervical cancer. I know that body image wise, it will never be the same again, we will always have this bag hanging from our bodies. And it IS just as important as the other cancers… I’m lucky that I have found the pros’ outweigh the cons for me and yet have spoken to some people who are devastated at having their bladder removed and that are struggling to come to terms with having a bag for life. there really should be so much more support

  • MicheleC720
    9 months ago

    BCAN.org is a wonderful resource for people with bladder cancer (Bladder Cancer Advocacy Network). There is a terrific support group through BCAN run by Team Inspire. The network of folks on t GBe site is super educated about the disease and treatment options, and very supportive of cancer patients and survivors.

  • Shirley Norris moderator author
    9 months ago

    Hi there MicheleC720, thank you so much for engaging with us and sharing your experiences. I’m thrilled to hear that you received great information and support from BCAN. I would be interested to hear, did you find BCAN yourself or did one of your medical team give you the information and details of the site? How are you getting along now? We would love to hear from you and this information is great for our members to see. So thank you, take care and remember that the community is always here to support you. Shirley- bladdercancer.net team member

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