It was the 13th of June 2019, a cold and blustery Sunday night in midwinter. I’d stayed up late after my family had gone to bed watching Spirited Away on TV. Getting ready for bed, I went to the toilet with the lights off, not wanting to disturb my sleep-adapted eyes. As I was relieving myself, I noticed that the stream was darker than usual. Something felt odd. I switched on the light. I was shocked to find the toilet bowl full of blood. A cold chill ran down my spine. When I saw blood in my urine, my heart froze. I had to blink twice. I couldn’t believe what I was seeing. There was no pain and no other symptoms that would point to anything abnormal. I went back to bed and tried to go to sleep. I didn’t tell my wife, who was sleeping peacefully beside me. I was telling myself that it was nothing. But in my heart, I knew there was something more sinister afoot.
The following day I visited my GP. I told her about my symptoms. She reassured me that it was probably just a burst blood vessel in my urinary tract. Even a tiny amount of blood in the urine can look like a lot in the toilet bowl. Nonetheless, she ordered some tests, including a urine and cytology test. I obediently collected my urine for the next three days for the cytology test. At the end of the week, I handed over all the tests to the pathology lab at the end of my street.
A week later, it was the start of the School Holidays. We were due to go away to a friend’s beach house on the Gippsland Coast for a midwinter holiday. I tried to put the events of the last week out of my mind. On a bleak Monday morning, we drove east, stopping in the main street of Traralgon for afternoon tea at a small bakery cafe. While waiting for our coffee and pies, I received a phone call from my GP. I missed the call, and it went to the message bank. I went outside to listen to the message. She told me the cytology test showed my urine’s unusual white blood cell count. My blood froze. I tried to compartmentalise the information in the back of my mind, not wanting to ruin the family holiday. On a stormy afternoon, seeing a rainbow during a walk on the beach gave me some hope.
Back in Melbourne, my urologist sent me for an ultrasound. The imaging found a mass in my bladder. The urologist performed a Cystopscy to confirm my diagnosis and used a TURBT to take a biopsy. The biopsy confirmed the diagnosis; I had an aggressive form of Bladder Cancer. My urologist was visibly upset when he delivered the news. He asked me if I had life insurance in place. This piece of advice panicked me even more. He said I had two choices. Operate now or have chemo first. His opinion was that the cancer was so advanced that it would be better to operate now.
It was then that all my denial left me. I fell into the cancer diagnosis black hole of despair. I stopped working. I stayed in bed desperately listening to healing meditations on YouTube. I went to the emergency department three times. The first-time for more blood in my urine after the biopsy. The second and third times for what turned out to be panic attacks inducing rapid beating of my heart. I was terrified for my future, but more so for my family’s future.
This post looks at the signs and symptoms of bladder cancer, its diagnosis and how to climb out of the cancer diagnosis black hole of despair.
Bladder Cancer Signs and Symptoms
In most cases, blood in the urine is the first sign of bladder cancer. This was certainly the case for me. I had no other symptoms before peeing blood. There may be enough blood to change the colour of the urine to orange, pink, or, less often, dark red. My urine was a disturbingly dark red. Sometimes, a routine urine test may find tiny amounts of blood in the urine.
I first heard about blood in the urine while listening to a podcast. Bruce Hopkins an actor who, in 2008, walked the length of New Zealand in his early sixties. He started peeing blood after numerous hard days on the trail. As it turned out, it was bladder cancer. Luckily for him, it was a low grade. After some laparoscopy surgery, he was back on the trail.
Some people may try to ignore symptoms. Blood may be present and absent one day, with the urine remaining clear for weeks or months. I never experienced blood in my urine.
However, blood in the urine doesn’t always mean you have bladder cancer. Sometimes, other things like UTIs, benign tumours, kidney stones, or other kidney diseases cause blood in the urine.
Other symptoms of early-stage bladder cancer include:
- Frequent urination
- Pain during urination
- Feeling as if you need to go right away
- Having trouble urinating
- Having to get up during the night to urinate
I already had an enlarged prostate, so I regularly got up at night to empty my bladder. Other than that, I had no other symptoms in 2019.
Bladder cancer that has spread to other parts of the body can sometimes cause other symptoms, including:
- Being unable to urinate
- Lower back pain on one side
- Loss of appetite and weight loss
- Feeling tired or weak
- Swelling in the feet
- Bone pain
Of these symptoms in 2021, I experienced a loss of appetite, weight loss and bone pain in my lower chest. I also experienced a swollen belly, chronic acid reflux and a change in my bowel motion. This led me back to my GP to investigate whether I had a stomach ulcer. I’d received a clear scan only in July 2021, so I did not suspect any cancer in September when I was experiencing these symptoms. She sent me for a gastroscopy. As I was due for a colonoscopy at the end of the year, I also elected for this to be performed. As I lay in the recovery room a week later, I didn’t suspect my cancer had spread for a minute. I reassured another worried looking man that everything would be all right for him. I knew how he was feeling at the beginning of the testing process.
Two weeks later, I was shocked when the gastroenterologist told me that a colon biopsy showed that my bladder cancer had metastasised. It felt like the end of the road. My wife and I hugged each other in tears. I rang my psychologist, who reassured me that I could beat this, that there was a way. I immediately felt uplifted. So began my journey to heal not only my cancer but my life as well.
Testing for Bladder Cancer
After the initial diagnosis from the urine test, you enter a stage of limbo before any treatment can commence. You are suddenly thrust headlong into the maelstrom of medical testing to discover the extent of cancer.
Before you get a formal diagnosis and receive treatment, there are three main testing stages. The first of these is likely to be one or more different types of urine tests.
Urine tests
When I first saw my GP, she ordered a urine culture test, hoping my bleeding was UTI-related. She also ordered a urine cytology test. For this test, a urine sample is looked at with a microscope to see if there are any cancer or pre-cancer cells. You usually take a sample over three days. This is the test that my GP called me about when the results came back showing abnormal white blood cells.
When I got my cytology test results, my GP referred me to a urologist for further testing.
My urologist referred me for an ultrasound that uses sound waves to create pictures of internal organs. It can help determine the size of bladder cancer and whether it has spread beyond the bladder to nearby organs or tissues. I received an ultrasound before my Cystoscopy to determine the tumour’s location.
Ultrasound, Cystoscopy, TURBT and Biopsy
Under a general anaesthetic, my urologist used a long, thin, flexible tube with a small video camera on the end inserted into my bladder via my penis. He told me if I woke up with a catheter in and needed to stay overnight, then they had found a tumour. This procedure confirmed the location of my cancer in a diverticulum which is part of the bladder that balloons out, forming a pouch. It also showed that the diverticulum was close to a main artery, making further surgery risky. My oncologist was reluctant to perform additional surgery. He referred me to a surgeon willing to take on the risk.
During the Cystopscopy, my urologist performed a biopsy of the abnormal area using a TURBT. A biopsy is needed to confirm the diagnosis if bladder cancer is suspected. The biopsy samples are looked at and tested by a pathologist. My biopsy showed how deeply cancer has grown into the bladder wall. If cancer stays in the inner layer of cells without growing into the deeper layers, it’s called noninvasive. If the tumour grows into the deeper layers of the bladder, it’s called invasive.
Invasive cancers are more likely to spread and are harder to treat. The biopsy confirmed that I had invasive cancer that was also aggressive.
Imaging tests
If you have bladder cancer, your doctor may order some of these tests to see if cancer has spread. Imaging tests use X-rays, magnetic fields, sound waves, or radioactive substances to make pictures of the inside of your body.
Computed tomography (CT) scan
A CT scan uses X-rays to make detailed cross-sectional pictures of your body. A CT scan of the kidney, ureters, and bladder is called a CT urogram. It can provide detailed information about the size, shape, and position of any tumours in the urinary tract, including the bladder. It can also help show enlarged lymph nodes that might contain cancer and other organs in the abdomen (belly) and pelvis. A CT scan is the imaging test most commonly performed during and after treatment to monitor progress.
Bone scan
A bone scan can help look for cancer that has spread to bones. This test usually isn’t done unless you have symptoms such as bone pain or if blood tests show cancer might have spread to your bones.
For this test, you get an injection of a small amount of low-level radioactive material, which settles in areas of damaged bone throughout your body. A special camera detects the radioactivity and creates a picture of your skeleton.
I received this test after my second diagnosis when I had pain in the back of my ribs. Subsequent scans after treatment showed that the bones were clear.
During all this podding and probing, you are likely to feel dispirited. There may also be a further wait before treatment or surgery begins. You may be confronted with making decisions about how to proceed. After my initial diagnosis, I fell into the cancer black hole of despair. I couldn’t face work as I undertook the tests that led up to my surgery. I curled up in bed on most days, not wanting to face the day.
But the second time around, I found some things you can do to help yourself climb back out of the hole. But first of all, you are faced with the dilemma of what to tell friends and family.
What shall we tell friends and family?
On both occasions, I kept the circle of those who knew about my condition to the immediate family. After my first diagnosis keeping it to myself was part of my denial. If I didn’t talk about it, perhaps it would go away. The second time I wanted to keep the energy positive. I didn’t want people’s sympathy or for them to bring their own agendas to the conversation. About so and so who died or so and so who found a miracle cure. I certainly didn’t share on social media. But everyone is different. I’m a very private person, an introvert. Sharing and drawing energy from a wider circle might be better for an extrovert. I felt the more people who knew, the more energy drained away from me.
What to tell the kids is a tricky one. In my case, my boys were 6 and 9 when first diagnosed. We didn’t tell them I had cancer as we felt they were too young to understand. They had both heard of children’s parents at school dying of cancer. We told them I needed surgery to fix my bladder and that I would get better.
The second time around, I was more open with my eldest, now 11. I told him I had cancer and that I would be receiving chemotherapy. Charlie was still too young to understand. We reassured them both that I would get better. It’s a fine line between too little or too much information. Too little information, then you risk betraying their trust if things turn for the worse. Too much information, and you risk overwhelming them with anxiety.
I also felt some shame around the initial diagnosis. I’ve lost three friends to cancer over the last few years. Good people who had lived healthy lives succumbing to cancers of unknown causes. My bladder cancer was more like an own goal, a consequence of smoking. It didn’t matter that my unresolved emotional issues from my childhood had led to my anxiety and smoking as a way to cope. Unlike breast or other forms of cancer, bladder cancer is mainly invisible and carries a similar stigma to lung cancer. There is judgment from the medical staff. Their first question is, do you smoke, or did you smoke?
Now, I would be more open to a broader circle if this happened again. I feel more comfortable expressing myself and sharing after The Journey. I couldn’t write about my experiences even a few months ago, as I am now doing on this platform.
Take back control – climb out of the hole
But there are three critical things you can start in 2021, and they were the focus of my recovery. I have written about them here:
- Surrender to a higher power
- Resolve your emotional trauma
- Change your energy
But you need to do several other things first before climbing back out. The first of which is to find a mentor.
Find a mentor
Just as Dante needed a guide to finding his way out of hell, you need to find a guide or a mentor to navigate your way back to perfect, vibrant health. I could not heal from this disease on my own. It takes a team of your loved ones, medical practitioners, therapists, and alternative healers. The most important member of this team is to find someone you can trust as a mentor to guide you through the journey. It helps if this person has experienced a similar diagnosis, but it is not essential. It could be a medical practitioner who you trust. It could be a deity. In my case, it was my psychologist ably supported by my medicinal mushroom practitioner.
It could also be a loved one, but it may help to find someone who is objective and not emotionally invested in your healing. After my first diagnosis, I felt rudderless, tossed about on stormy teams, not knowing who to trust or what I should do. The second time I was lucky to have a mentor who I could trust and help me find my path.
The second thing you need to do is to find something to do in all the downtime.
Find something to do, find your purpose
In the hospital, for five weeks, I could only watch TV. It was a similar story back home, especially once the chemo started. I was in survival mode and unable to do anything more than watch mindless TV.
I quit my job after the second diagnosis. I knew I needed to focus on healing, but my work was part of the problem. I felt stuck in my Information Technology career, so I focused on The Journey, Dr Joe’s Meditations, and looking at complementary therapies.
Attaining perfect health was my number one priority. I also listened to podcasts about Space, which gave me hope for the future. I watched standup comedians and Seinfeld reruns on TV, and I found time to laugh on YouTube.
As my health improved, I didn’t return to my old career. I started picking up side hustles on the Internet. User testing, content writing, and paid surveys provided a small income, making me feel I was contributing to my family again.
The message is to make your healing your purpose. If that means giving up your job, so be it. But find something to fill in the vacuum. Find some humour in your life. Don’t fall into the cancer black hole as I did in 2019.
Conclusion
A cancer diagnosis can be terrifying. The subsequent wait for a formal diagnosis and additional tests before treatment can commence can be equally terrifying. Faced with the unknown, it is easy to feel out of control and fall into the cancer diagnosis black hole of despair. But there are ways to take back control, climb out, and get on the road to healing your condition and your life.
References
- ‘It’s been the bloody long way home, but I’m here!’; Available at URL: https://www.rnz.co.nz/news/national/356898/it-s-been-the-bloody-long-way-home-but-i-m-here
- Bladder Cancer Risk Factors; Available at URL: https://www.cancer.org/cancer/bladder-cancer/causes-risks-prevention/risk-factors.html
- Bladder Cancer Signs and Symptoms; Available at URL: https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging/signs-and-symptoms.html
