Welcome to the Club – Advice & Suggestions for Someone Newly Diagnosed by Liz Hiles
When I was fighting for 2 years prior to receiving my bladder cancer diagnosis, I knew something was wrong. I knew it. The ER docs kept running tests and saying there were no signs of infection, yet still, I was supposed to believe that I had a UTI or bladder infection. Repeatedly. I questioned it, repeatedly. Still, I was brushed off. I remember asking, “Don’t those things resolve with medications? This is not resolving, it’s getting worse.”
“Well, just try this and come back if it doesn’t go away,” I was nonchalantly told. I pleaded that this was me already coming back.
How is it the patient’s responsibility to figure out what is wrong with them? Oh! It’s not, but apparently, it’s not the medical team’s either.
Unfortunately, this is the story of many women and minorities who experience bladder cancer. Historical studies and most clinical information about bladder cancer are based on the experience of elderly, chain-smoking, Caucasian men. Nothing has been considered with the experiences of women, who have a slightly different urinary system, which would obviously mean that symptoms would be experienced differently.
One ER physician had the balls to assume that the blood clots that I was urinating were a result of my menstrual cycle. He laughed at me when I told him that if he had blood clots traveling through his urethra, he would know it. Yes, there were choice words included in what I said.
I had no idea that bladder cancer was even a thing. I had to beg for a referral to a urologist. The urology team thought I was crazy for not seeking help sooner and were shocked when I said I’d been trying to get help for years.
By the time I was diagnosed in August 2016, I had Stage 3B bladder cancer with a T4 tumor that was grapefruit-sized, growing through my bladder wall, attaching to my cervix, and partially blocking my left kidney from draining correctly.
I was floored.
I vaguely remember sitting in the exam room when I received the diagnosis. The doctor, filling in for a vacationing colleague, did his best. He earnestly looked me in the eyes and said “There’s no easy way to say this, so I’m just going to come right out and say it. You have bladder cancer.” Everything else that was said in that next half hour sounded like the adults in the Peanuts cartoons. I intellectually knew what was being said but nothing was sinking in. Thank goodness I had a loved one with me.
The next 8 months there were a lot of ups and downs as I fought for my life. I had a radical cystectomy with a radical hysterectomy, removal of my pelvic lymph nodes, and a stoma placement for a permanent urostomy. In layman’s terms, I don’t have a bladder, reproductive organs, or pelvic lymph nodes, and the doctors created a hole in my abdomen, so I constantly pee into a bag now. Once I recovered from that massive procedure, I had 3 months of dense dose MVAC chemotherapy. I literally and figuratively was taken to my knees with all of this. From there, I began to build my life back up.
I will never again accept passivity from a medical professional. They will hear me out and take my concerns seriously or be fired from my care team. People, doctors work for US! Not the other way around! Yes, they are professionals and have gone through the training, but if they are not listening to you, taking your concerns into account, running appropriate testing, including you in the discussions, and figuring out what is wrong, FIRE THEM! Take your business elsewhere. That is 100% your right!
Another thing I want people to learn is that you are not your organs! So many people in the bladder cancer community progress to stage 4 and lose their lives because they resist getting rid of their organs! People live WITH ostomies all the time. If you have an ostomy, you may die with the ostomy, but not because of an ostomy. You can live a long life and have a good quality of life without a bladder and with a urostomy. In fact, ladies, losing your reproductive organs is not the end of the world either. Things just may look a little differently or play out differently than you planned. You cannot be there for your loved ones or raise children if you sacrifice your life for unnecessary body parts. To me, it’s plain and simple, but I know it is not viewed that way by all. Why fight to have children that you will never get to raise? You must be alive, first and foremost. If your doctor is suggesting bladder removal for bladder cancer, there are reasons for that. TRUST THEM! If you do not trust your doctor, you should not continue seeing them.
Next up, be kind to and gentle with yourself. Cancer, regardless of type, does not just END when treatment does! There are physical and emotional issues that continue. Some will eventually be resolved. Some may continue for the remainder of your life. Healing from and dealing with the physical aspects is the obvious thing and is usually handled first. The mental and emotional things come later, take longer, and usually require assistance and sometimes new “tools.” You should also be prepared to be forced into a position of attempting to explain to people in your life just what you are going through and what you have been through. They may not really understand any of it and you may even lose people over your diagnosis. You are not responsible for how other people respond to what you’ve been through and you must be patient with yourself and give yourself time to heal from everything. You are only responsible for yourself.
Lastly, your diagnosis may change your life, but it does not have to define your life. You may change how you do things. It may change your energy. There are a lot of things that cancer can change. However, you can still accomplish anything you want to accomplish in your life. Depending on your diagnosis and the type of treatments you had, you may require some extra planning to make sure you have the physical aids and accommodations that you need, but you can still do whatever you want! I am living proof.
I am now almost 5 years from diagnosis. Almost 5 years cancer-free. Life has thrown me some curveballs, even without counting bladder cancer, but I am still here and still tackling big things. The road to get here was more scenic than planned, but I have no regrets. Only lessons. I choose to have a positive perspective and see the silver linings. I choose to not let cancer win and steal the best parts of me and the life I want. You can too.
