When you receive a serious health diagnosis one of the first things that comes to mind is, “Am I going to die?”. Sometimes we are fortunate and hear the doctor’s reply, “No”, but there is usually a “but” associated with that and that “but” often means something like surgery or treatments of some type. Other times we do hear, “Yes” and it may be soon or may be sometime in the future.
I was diagnosed with early-stage bladder cancer in September 2008. When my urologist gave me the results of the biopsy by phone about two weeks after my surgery to remove the bladder tumours, like many people my brain shut down the minute that he used the “C” word. Prior to his call, I had been hoping against all hope that there would be that last minute miracle and I would get the good news that the tumours were benign. That was not in my fortune cards. My official diagnosis in medicalese was “early-stage non-muscle invasive high grade transitional cell urothelial carcinoma.” I will tell you those words sounded ominous to say the least. So how close was I to dying and potentially leaving my husband with two underage sons to raise on his own?
My urologist explained that my diagnosis was a “good news” “bad news” scenario but most likely more good news. The good news part was that it was early stage hence the term “non-muscle invasive” meaning that the cancer was on the inner surface of the bladder wall It had not invaded the inner layers. The not so good news was that the cancer was high-grade meaning aggressive and with some risk of progression should it recur.
To reduce the risk of recurrence and progression he recommended immunotherapy treatments, which involved a drug called BCG or Bacillus Callumette Guerin. The drug is inserted into the bladder via a urinary catheter, and you hold the drug inside for about 2 hours and then void it out. The protocol called for a treatment once a week for six weeks and then after about a month, I would see him for a follow-up cystoscopy exam (camera inserted into the bladder via the urethra) to check to see how things were. The way he explained it, it sounded simple enough, but my mind went in a million directions all at once. I did ask about risks of the treatment, but he made it sound like a breeze compared to the traditional systemic chemotherapy that many other cancer patients receive. My brain was too frozen at the time to ask any more questions, plus I could sense that my doctor was really busy, (are they ever anything else?) and needed to get off the phone. He finished the call by telling me that his receptionist would be in touch once the treatments were booked.
Once off the phone, the brain numbness started to wear off and my thought was, “What just happened here?” It was too much. I just started to bawl. Thankfully my hubby was at work and the kids were still at school. It gave me some time to get my head together.
Truth be told, I was terrified of the idea of those treatments. While it was not chemo, I knew that it was a powerful drug from the description that my doctor had given me. I knew people that had died from complications of chemotherapy treatments. My urologist told me that most people that did the treatments just felt like they had a good dose of the flu for a couple of days afterwards. So, exactly how right would he be?
As it turned out, he was right to some degree. What he didn’t realize though was that I was a fifty-year-old woman just entering menopause. The BCG made the hot flashes and night sweats far worse than they would have normally been. So, I had menopause symptoms on top of BCG side effects – fun stuff. And when I asked about HRT to relieve the symptoms, I was told that it was not advisable to combine that with cancer treatment. Oh, and I did have some side effects that many cancer patients receiving chemo have – chemo brain that affects concentration and memory, digestive issues and a whole lot of fatigue. Thankfully hair loss was not one of them.
I powered through and after the six weeks of treatments were finished, I got good news at my follow-up checkup. No tumours. My doctor was very pleased and told me that all I needed to do now was come for a cystoscopy check every three months. If I remained clear of bladder cancer for two years, I would graduate to check ups every six months. This checkup happened right before Christmas 2008. At the conclusion of my exam, he wished me Merry Christmas. It was the best Christmas gift I have ever received. My hope was restored, and I felt like I had a future. I would get to see my boys grow up after all.
I nearly made it to the two-year clear mark when a single tumour of the same type, stage and grade was found on the top of my bladder in July 2010. I had been so hopeful that I’d make it to the two-year mark (Christmas 2010) because I had been doing so well. I hadn’t even had a cold. Well, after viewing that tumour on the monitor, my hopes were more than dashed. I was devastated and felt hope for my future sinking fast. What now?
Well, I had another surgery to remove the tumour and that was followed by another set of six treatments which were followed by three sets of three at three, six and twelve months after the set of the six. This was my life for the next eighteen months. The side effects were cumulative and by the end of it all, I was feeling pretty crummy. It would be more than a year before I started feeling close to normal.
I had suffered some pretty serious depression with the first go round especially because I had no one to talk to. What I really needed was to talk to another woman who was going through the same thing. Back then there were not the resources for this as there are now. I did not want to go down the deep dark rabbit hole like the first time. Somewhere, somehow, someone had to give me hope.
By this time, I had learned how to use the computer better and decided to google support for bladder cancer. The link for Bladder Cancer Canada popped up. Realizing it was a Canadian organization made me curious. I went on their website. As I perused all the information on the different links, I also discovered a discussion forum. From here I was able to connect with both men and women of all stripes and various journeys with bladder cancer. They helped me put my situation into a better perspective. After this, I was able to understand that while serious, my situation was not life threatening and that restored my hope that I was going to be okay.
Partially through communicating with others and my own personal reading, I learned more about eating a better diet, the importance of exercise, correct use of vitamins and supplements and most important of all – improving my mindset.
Before my cancer diagnosis, I was turning into a really negative person. I’d been through a lot during the past decade or so, and it was getting to the point that I’d reached burnout. Getting cancer was a real wakeup call and made me question everything: who I was, how I got to where I was, what kind of changes that I needed to make and where I should go from here. In other words, a potentially life-threatening diagnosis made me into a better person and gave me hope for the future.
As the months of “all clear” progressed to years, I realized the gift that I’d been given. I have had a second chance. A chance to do good, a chance to live better and best of all hope for tomorrow.
For more information on Bladder Cancer go to www.bladdercancercanada.org