On March 8, I celebrate my 60th birthday. 2019 is doubly significant as I also celebrate 30 years as a bladder cancer survivor. I am incredibly grateful and consider myself fortunate.
But on reflection I remember it being a surreal time with overwhelming feelings of disbelief. Mostly I recall the oddity of being diagnosed with a medical condition I had never known about or understood. Bladder cancer – the doctors were kidding me, right? I am a woman, and at the time of diagnosis I was 30 years old. Research informed me that bladder cancer was 50% less likely to occur in women and 50 years the average age.
In 1989 at age 30, I had a blessed life with a career in check and a happy family – running around after two small children. But I felt tired, was overweight and had a recurring UTI (urinary tract infection). When blood was evident in my urine, my GP ordered further tests. I was shocked when a tumour occupying 90% of my bladder was detected.
Immediately I was paired with a prominent Urologist and soon I became known as that young girl in Ward 3 South at Cabrini Malvern. Life as I knew it changed for ever and my case was shared widely in medical journals.
Surgeries and several treatments of BCG ensued, instilled in a catheter and lying on a gurney I rotated 90 degrees every 15 minutes. The tumour was successfully removed and my bladder responded well to treatment. On the physical side, all boxes ticked.
Emotionally though, I was challenged and confused. This was the 1980’s, the big ‘C’ was still under a cloud and young people don’t get this disease anyway. Ironically, I became aligned with my father and father-in-law. Aged in their 50’s and 60’s they too were visiting respective Urologists’ and each was in early stages of prostate cancer.
Entrusting the medical fraternity with managing my physical issues, I began a gentle regime changing my approach to mind, body and soul. I shifted my focus to improving everything I could control as a mother, wife and human. I shed kilos, exercised, stopped smoking and gave up the carnivore life.
Cystoscopies became part of my routine and I often walked to hospital from home. When I changed into theatre garb, the walk continued all the way into theatre, no trolley for me thank you. I made my instructions clear – strictly local anaesthetic. Remaining alert I chatted through procedures with theatre doctors and staff. I believed this would ensure I had the mental apparatus to live the experience and will myself to health.
It’s been an epic 30 years and in a recent post-cystoscopy chat with my Urologist we have agreed that I am clear of any nasties for now and I can ease up on the checks going forward.
My team of vigilant doctors have been a blessing and no less are my amazing supportive family. I am indebted to them all. To Drs. David Bosher (GP), Gabi Reisner (former Urologist) and Daniel Moon (current Urologist), thank you, thank you thank you…..30 years surviving has been largely due to you.
I urge everyone to be vigilant. Listen to your body, read the signs and act!
Frankie
Frankie, that is so young and thank you for your story.
I have to go by to my urologist this week. For the past 2 months. I had been peeing tons of blood in the morning. Not all the time. I go to my PCP, he says no blood no UTI and everything is fine. I’m thinking I need help. 4 years ago I went to a nephrologist for chronic kidney stones, I was scared to go back, due to it was a renal clinic.
My story. I am 38 now, At 30 years old, I passed 15 kidneys stones. For 3 years. I passed kidney stones every week. I had bladder spasms due to it. Those were worst. To the point I couldnt take it anymore. I got insurance, I got pain managment to help me thru work, enough was enough, I could pass a stone and at work, and got back to work. Like life became numb, I felt no pain anymore. I could pass a 6mm kidney stone like nothing. Then one day came the 12mmx9mm. That one threw me in the hospital. Finally I got a new urologist, he listened to me! istened. And did more looking into my complaints, did all kinds of test. had surgery! 2015! They removed over 50 kidney stones in my L kidney. He said they stopped counting there were soo many. BB sized stones. They never showed up on a xray, MRI, or ultrasound the day before. But he said they were there. He said I had a pocket in the top of my kidney, he had to remove a top pocket portion, 1/3 of my kidney removed. He said i should have a better quality of life…. It has been smooth sailing for 2 years. I started passing 2 in my Right. No problems. 2 nodles removed from my L breast. In between then. Well technically more than a couple of months. I have noticed my urine being rust color, with the first mornings, urine. My PCP is doing nothing. So I am having to go back to my urologist again. I have a weird kidney back pain, if you haven’t had kidney stones. You wouldn’t know it. Or a women… almost like that time of month. . Bladder feels full, or feels just weird. I have always got UTI easily due to those kidney stones. I have a dreaded feeling in the pit of my stomach. I keep telling my doctor it feels like a UTI but with no pain. The chills, joint pain, sweats, burning up, peeing alot or none at all. And I read all this information.. I’ve been in denial. I want to swear it is frequent UTIs from anything but this… It can’t be possible for anything else. But. Now I am listening. I am making an appt this week. I am so scared. I’m shaking.