Jonathan remembers the first time he saw blood in his urine. It was his and Mandy’s anniversary.
We are honoured to work with Jonathan and his wife, Mandy, to share the story of his bladder cancer diagnosis. Through months of cystectomies, surgeries and finally, BCG treatments, Jonathan thought to capture the ups and downs of his cancer journey through his writing and photography so that others in his life could share in what he was experiencing. Share your own story at firstname.lastname@example.org.
Jonathan remembers the first time he saw blood in his urine.
It was his and Mandy’s anniversary. This is, of course, the moment that their lives would change direction.
“I went to use the bathroom and completely out of nowhere I started peeing bright red,” writes Jonathan. “It wasn’t like it had an off colour, this was unmistakably a significant amount of blood coming out. There wasn’t much debate on going to the hospital.”
Jonathan had been in and out of the hospital a few weeks prior. In early September, he had been admitted to the hospital with a foot injury while working on his front deck. He then returned a few days later with a pulmonary embolism that would end up with him being admitted into critical care for three days. After those experiences, they didn’t know what to expect when they rushed back to the hospital.
“We headed up and I was taken right away and put in a room after all the standard preliminary questions and tests. We waited quietly together for several hours before we saw a doctor. Then he ran a urine test and again we waited for the results. Hours passed and finally the doctor returned. His diagnosis was that it could be due to the blood thinners, a bladder infection or something more serious and scheduled me for a cystoscopy.”
A cystoscopy is when a hollow tube with a lens is inserted through the urethra (the tube which drains urine from the bladder) and slowly moved into the bladder, so that doctors can examine the lining of the bladder for tumours. This is the main way bladder cancer is detected. The procedure can be done in a doctor’s office or hospital setting. Most often a local anesthetic is used to numb the urethra, but sometimes the procedure is done as an outpatient with sedation. (From Bladder Cancer Canada’s website; read more here).
Jonathan’s cystoscopy was scheduled for four weeks later. It’s a very long time to wait when you’re scared and you don’t know what might be wrong.
Jonathan wishes now that he had known about the online discussion forum on Bladder Cancer Canada’s website, where other people, just like him, were either waiting for their own cystoscopies, or had previous experiences with them and could share what to expect. Instead, Jonathan busied himself with some other projects around the house and tried not to think about what was ahead.
The day of Jonathan’s cystoscopy arrived. He’d gone online to research what the procedure involved so he knew what to expect. He was nervous, knowing that he’d be awake during the procedure.
Prior to the cystoscopy, he sat with his doctor and together, they looked at the CT scan that had been done on Jonathan during a previous hospital stay.
“When he brought up my bladder image, my heart skipped a beat,” says Jonathan. “Even I could see that there was something there.”
The doctor reassured him that what they were looking at wasn’t very big, that it could be a several things and they were about to find out exactly what it was. He walked with Jonathan to the operating room, and the nurses, seeing him shaking from the stress and fear, helped him onto the table and covered him with a heated blanket.
“Once the camera was inside, the issue was clear as day,” recalls Jonathan. “Not only did I have a tumor in my bladder, but the tumor had a large mineral deposit on it. In fact, it was the deposit and the blood thinners that was creating the blood in my urine.”
After the cystoscopy, Jonathan and Mandy sat with the doctor and discussed the discovery of the tumor. Months prior, during a routine check-up, a urine test had showed micro-bleeding but it wasn’t concerning, given Jonathan’s age, health and lifestyle. Now, there was a reason to be concerned, the doctor agreed.
“Mandy was right there with me as the doctor explained next steps,” Jonathan shares. “He said first, the tumor had to come out and they would do that in two weeks which was a pretty quick turnaround to get on the surgery list.”
Next, they would determine if the tumor was either benign, low-grade cancer, or high-grade cancer. After that, if it was cancerous, Jonathan would begin BCG treatments for six weeks and then be re-evaluated.
“We left the hospital with a cloud over us, but at least there was a plan in place,” adds Jonathan.
Up Next: Jonathan’s First Resection Surgery
Can’t wait? Read the full story on Jonathan’s site here.
Please note that Jonathan’s story is his own personal experience and may not reflect your own symptoms, diagnosis and treatments. As always, remember that stories shared on Jonathan’s site, the Bladder Cancer Canada blog, podcast or elsewhere are not a substitute for professional medical advice or treatment. The content on Jonathan’s site are the personal views of the writer and is for information only. Always consult your physician and do not rely on information you find on the internet when making decisions about your health.
If you See Red, See Your Doctor
Early detection of bladder cancer is critical to preserving the bladder and protecting the quality of life for bladder cancer patients. The most common symptom of bladder cancer is blood in the urine, and unfortunately, this symptom is not always taken seriously. Medical attention is not always sought – particularly for women, who think that this blood could be related to their menstrual cycle. Other symptoms of bladder cancer include:
- The need to urinate often
- An intense need to urinate
- Trouble urinating
- A burning sensation or pain during urination
- Back, pelvic or groin pain
Waiting for and receiving a cancer diagnosis can be an extremely frightening and isolating experience. Many people share how alone they feel during this time, because others around them can’t relate at the same level. Support services are extremely critical during this time and BCC offers several free services through our website including a discussion forum, a peer support program (where patients talk one on one with other patients), online support groups, educational webinars, downloadable patient guidebooks and more.
All of these services are available for free at www.bladdercancercanada.org.
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