Rajesh Shah, 66 was diagnosed with Stage 2 cancer in the urinary bladder and soon after underwent a prolonged surgery. The surgery was successful, and he is leading a normal life now for more than 6 years. He talks about his attitude towards life and his experience of living with a stoma bag, among other things.
Please tell us about your present condition. Can you describe it?
I was diagnosed with bladder cancer. But I had my operation about 6 and a half years back to remove it. I’m absolutely fit now.
What were the early symptoms? What made you go to a doctor? How did the diagnosis come about?
I had pain in the stomach and blood in my urine. Previously, I’ve had stones in the kidney, so I thought that was possibly the reason for blood in the urine. When I consulted doctors, they also told me that could be the cause. But later they asked me to go for a sonography, which led to further tests.
First CT scan, and then MRI. It was clear from the tests that I was in my 2nd stage of cancer in the urinary bladder.
What was your reaction to the diagnosis? How and when did you break it to your family?
Me and wife were together when this diagnosis was revealed to us. I also shared it immediately with my son and daughter, who are both abroad. I did not think I should hide it from my family. Also, my will power is strong, and I decided to tackle it head on. There was no point in shying from the fact.
What happened next? (specialist referral, course of treatment etc.)
I was advised to go for surgery. It was a 10-hour long surgery. I did not have to take any chemo. During my surgery and thereafter my daughter, who was at that time in India, was by my side and was my support. But my bladder, appendix and prostate were removed in this surgery.
Did you have pre-existing health conditions?
I have lived with Diabetes, BP and high cholesterol for the last 15 to 20 years.
What stage are you in now? Has the cancer progressed?
The cancer is 100 per cent out of my system. But I have to live with a stoma bag, since my urine comes from a hole in the stomach. The stoma bag needs to be changed every 5/6 days, and the urine bag needs to be cleared every 2 hours. At night, I use a larger urine bag, a 2 liter bag, so I don’t have to get up every 2 hours. With this arrangement, I have travelled abroad thrice since the surgery and have faced no issues at all.
Please share your experiences and initial struggles of living with the stoma bag, including the financial implications of using a stoma bag.
Stoma bags are expensive. A branded and a good set together with the bag, pad, tubes as well as a belt comes for as much as Rs 952. But you can also get one for as cheap as Rs 100. The cheap one didn’t suit me. It gave me itching sensations. Plus, I thought since the bag will be placed around the hole in the body, I did not want any unsafe foreign matter to enter my body, because my immunity is at stake. I have four or five dealers from whom I buy my stoma bags, whoever gives me a good deal. During winter, my bag often lasts for 9 or 10 days.
Who trained you in the use of the stoma bag?
The doctors who conducted my surgery taught us how to put on a stoma bag and use it. Initially, we used to go the doctors for a change. That is when my wife learnt it. I found it very uncomfortable to wear at first, as is expected. At night, I would put on an alarm to avoid leakage, and I have also faced leakage at night. During the day, I’m more alert, because I can feel the weight of the bag getting heavier when I need to go for a change. Because I use a bigger bag at night, I do not have to get up in the middle of the night to change it. But while sleeping, I only turn on my left side or keep straight. I cannot sleep on my right, which is my surgery side. The doctors recommended my stoma bag brands for me. Initially, I used to wear a belt with my stoma bag, as I felt it might come off when I move around. Now I don’t need anything to hold it and am much more confident about using a stoma bag.
You have travelled abroad with your stoma bag, but have you also gone for road trips in India? How have you handled them?
Yes, I have also been on road trips. I just have to be careful to stop every two hours. I also take less water when I’m on a road trip. Plus, I need to also keep in mind to stop at hygienic places. Once I went to a less hygienic place, I picked up an infection and I had fever for 4/5 days. So, I need to be careful about that. I drive a two-wheeler as well as a 4-wheeler.
What medications are you on? Pls mention all allopathic medicines and indications of each.
I take medicines for BP, diabetes and cholesterol. But I do not take any medicines for post-cancer treatment.
What is your treatment pattern? Besides medication, what else do you do to heal and improve quality of life (diet, nutrition, exercise)?
I have been asked to take more of protein. Every morning, I take a bowl of whole moong and some pistachios too. I’m a strict Jain by practice, so I do not take onion, garlic or even potatoes. So, my daily food comprises wheat roti and sabzi. I have stopped having rice and I take very little sweet, both because of my diabetes. I also walk on a regular basis.
Have you had to make some changes to your lifestyle because of your condition?
I have been advised not to lift heavy weights. Otherwise, I lead a completely normal life.
What are the complications from the cancer and its treatment? How do you handle each of these health conditions (heart, kidney, edema)
I have faced no side effects of the cancer or the surgery thereafter.
What is your advice to patients who face similar challenges.
Trust your doctors and have will power to face the consequences. Everyone has to go from this world one day. It is important to quit that fear.
Which specialists do you consult and how often?
I consult my Cancer specialist once a year. That is also when I get my tests done for a proper checkup. Soon after the operation, I used to get myself checked once every 3 months. I had my surgery before Covid. But I faced no problem during Covid. I did contract Covid, but it was fortunately mild, and I was clear in 4/5 days.
Did you have to travel outside your city for medical treatment?
No. My doctors were recommended by my niece, and they are both in Ahmedabad.
Have you tried alternative medicines or therapies, like ayurveda, homeopathy, siddha?
No. Not even for a day.
Do you have a family history of this condition? Was genetic testing done?
My grandmother had cancer.
Has it been difficult emotionally to cope with your condition?
I’m a strong willed and a positive person. So, I could handle my condition well without breaking down.
I have had the full support of my family, and specially my wife who has stood by me throughout. She takes care of all my dressing and medicines and diet. I’m here today because of my wife.
When did you break the news to your friends and distant relatives? How did they take it?
I shared the news with everyone immediately after my diagnosis. What is the reason for holding it back? They were worried but I had to share the truth.
Any personal anecdote you’d like to share with us.
I’m Jain and I’m a religious person. The day I was admitted to the hospital for my surgery, my guru called and told me that nothing will happen to me. I will be here for the next 10 or 15 years. That definitely strengthened my resolve to tackle the situation better.
What are you worried about for the future?
Nothing at all. I’m 66 years now and I’m fit and doing all things that I would like to do. What more could I ask for?
As told to Moyna Sen
