When Shraddha Shah, 63 from Ahmedabad was diagnosed with bladder cancer, she was single mindedly focussed on getting through the treatment and getting better. But the biggest challenge was yet to come. Read on to appreciate her journey and challenges.
The Diagnosis
The year was 2014. I work from home as an Aromatherapist but I had started feeling listless and didn’t want to do any work. I would shrug to get out of bed every morning and generally had low mood all day. In June, that year, my husband and I were on a trip to the US to visit my daughter. In the washroom one day, I saw the whole commode filled with blood. I didn’t flush it and rushed out to show it to my husband and daughter. We immediately reached out to a few of our doctor friends. They conferenced with us and suggested we get it checked the following fortnight when we were set to return to India.
When we returned, we immediately went in for a sonography of the pelvic region and a lump was visible in the wall of the bladder. Then I was sent for a CT scan which confirmed that it was bladder cancer, stage 1 but high grade. Biopsy was carried out and the histopathology report was sent out to a few doctors even in Mumbai. We met with an oncologist in HCG who suggested that just the tumour be removed. While another doctor suggested that the entire bladder be excised. We decided to go with a more conservative approach and get just the tumour removed. Although, we were aware that since the tumour was high grade, it could come back.
Treatment
On July 2014, I underwent my first surgery to remove the tumour. The tumour was removed but the margins were not cleared. Consequently, we lost confidence in our Oncologist and switched to another doctor. I had my 2nd surgery in august for scrapping of the bladder to remove all traces of cancer. Then followed 6 cycles of Chemotherapy. Two hours into every chemo cycle, I would get high fever reaching 1050F along with severe pelvic pain. It was really tough and I could just about manage to come back home after every cycle.
Monthly sonography follow-ups were mandated, and I was fine for about 6 months. Then during one follow-up in April 2015, the cancer reappeared. Within 2 hours, we were at the doctor’s office discussing next steps. One option was to redo a tumour excision and the other one was to remove the entire bladder. Having gone through option one already, I wasn’t ready to repeat it and then live in fear of the cancer appearing again in 2 years. Option two would mean an entire change in my lifestyle but I decided to go for it.
Since the cancer was advancing fast, we did not even wait for my kids to come and scheduled it right away. The next week, I was wheeled into surgery for the removal of my entire urinary bladder, and ovaries. Part of my intestines were cut to make an artificial bladder and a stoma created by the side of my abdomen.
Recovery
Recovery post surgery was extremely slow. When I came out of the ICU, I had 9 tubes inside my body. One time, my intestines got entangled, and I had to be rushed in for an emergency surgery. I was very critical at that point.
For 6 weeks after surgery, I had no appetite and didn’t want to even see food. I had no energy to stand up so I would stay in bed for most of the day. I would be listening to my meditation tapes and fall asleep. Out of 24 hours, I would be sleeping for good 18 hours. This helped me not get into any psychoemotional stress. All in all, I lost 11 kilos of weight and it took me almost 6 months to get back to my feet.
I never doubted that I would come out of it. This is just the way I am. I am not fearful! I never asked, “why me?”, instead my focus was on how to get out of it.
Dealing with the Stoma
I have an artificial urinary bladder (pouch) attached to an external urostomy bag and which needs to be emptied out every 2-3 hours. Most times, it overflows if I am not paying attention or if I am out with no access to a washroom. I used to cry initially,and it took me almost a year to come to terms with it. At night too, I have to sleep flat on my back only. As it is not possible to keep waking up to empty it, often times, it overflows and in the middle of the night, we have to change bedsheets, and clothes. It’s most disturbing! I now have a larger bag that I put in when I need more capacity for longer hours. Most of the stoma supplies are not available in India, so I order them from abroad. For instance, it took me a long time to find a water-proof apron that can be worn while showering. Finally, I bought it from overseas and I use it daily. Due to rapid fluid loss, dehydration can creep up suddenly, so I have to be aware of that. During summer, when the weather is very hot and dry, I try to stay indoors. I do drive occasionally to run some errands; I have an automatic car so it’s easy to drive. When I travel abroad, I do ask for wheelchairs at airports. I have been stopped multiple times at security because they think I’m carrying a water bag and don’t understand what it is. Once I was even asked to empty my artificial bladder, I told them to call and speak to the airport medical staff.I have even threatened to empty my bag on the floor right there if they done allow me to pass and go to the restroom. But this does not stop me from travelling and living my life.
Biggest Challenge
Getting adjusted to the stoma and the pouch has been my biggest challenge. After my surgery, my husband had to run around to even find the correct urostomy bag. There was no stoma nurse who could teach me how to manage it. After asking around, we finally found a lady who came home and taught me how to do the dressing, change the bag and care for the stoma. In 2019, when I went to UK, I met a stoma nurse for the first time. By then I had become quite knowledgeable and had been managing on my own for years.
My family have been by my side the whole time. My daughter and son also supported me emotionally when I needed it.
Advice to other patients
- This is not the end; it is just a different beginning.
- People fear the word cancer and get scared right away. We all know that it will be difficult, so we need to get on with it.
