Diagnosed with PNET (Peripheral neuroectodermal tumour / EWING Sarcoma of Presacral region, and having battled EWING Sarcoma for the last 20 years as told by doctor after resection of my tumour. I now have a lifetime colostomy and want to share my story
In early 2014 I had acute pain in my pelvic region and as the months went on I started losing a little bit of blood when going to the toilet, the blood loss gradually got worse and it became more and more painful. I realised that something was wrong and that I needed to see a specialist or ayurvedic doctor as this wasn’t going away.
I saw a ayurvedic doctor in February 2014 and that’s when I was diagnosed with Ulcerative Colitis a form of chronic Bowel Disease where the lining of your colon is covered in ulcers you suffer from rectal bleeding, chronic fatigue, weight loss, bowel rushes, joint pain, extreme nausea and plenty of sleepless night! It’s an autoimmune disease – and to put it simply my immune system attacks itself, I was 38 when I found out and I really didn’t know where to turn or who to talk to it’s not really disease people are aware of or open up about.
Soon after few months, in early morning I went to toilet and was not able to urinate. I rushed to nearby Sarvodya Hospital in Faridabad and they told me for ultrasound. As the months went on I spent two or three times in hospital where we tried different medications to get me into remission.
I got my ultra sound report and was not aware of cystic mass in my pelvic region. I was told; I have prostate cancer and have to have operation at earliest. I was shocked and surprised how come prostate cancer, am I old enough. Then one of the senior surgeon Dr. Subash haku told me to have MRI or CT scan of pelvic region. Soon after the report I was found that I had tumor (benign or malign) of 14.3x10x14 cm solid cystic mass epicentered in presacral space. The lesions is compressing and pushing rectum and urinary bladder anteriorly. However involvement of posterior rectal wall is unclear due to compressed rectum. I was shattered and told my brother is my end near bhai. I told him not to say anybody at home.
In November 2014 I had the worse flare up one where the consequences will live with me forever, I was in hospital twice that year as the flare up was so out of control we struggled to get in remission, I was still at work in an incredibly demanding role where day to day I was either or on the road I did everything I could to hide it from colleagues, and running to the toilet up to 10 times a day loosing heavy amounts of blood, incredibly fatigued and the pain was unbearable. I did everything I could to hide what was happening to carry on with my job. I was also heavily anaemic, suffered from temporary arthritis of the joints in particular my elbows, the fatigue was unforgiving and in between office hours I would sleep for an hour in the conference room, my hair was even falling out from the amount of medication I was pumping into my body. Stomach cramping and chronic nausea certainly didn’t help! I began to look grey from the anaemia as well as the exhaustion and my colleagues started to realise something was wrong and it became increasingly difficult to hide. I couldn’t even make it into the office without stopping to the toilet a million on the way to the office I knew this flair wasn’t going to go anywhere. I knew something had to be done.
I met with my consultant at the All India Medical science (AIIMS) in Delhi and after a colonoscopy my consultant tapped my shoulder and said its surgery for you! I met with my surgeon a few days later and he educated me on the procedure and on what to expect. I really felt at this point like my life was over I knew I was in excellent hands but I still had so much going through my head that day – I am 38 and my perception was that old people have stomas? How would I continue day to day living? What are people going to think? I never met anyone my age or a young person with a bag?
I had my surgery in the December and underwent Laproscopic Abdominoperineal resection and they have removed my colon and gave me an ileostomy. Surgery wasn’t plain sailing for me unfortunately and after I was discharged from hospital. Recovery was slow, I struggled to walk a few metres and felt incredibly weak, I don’t think being so skinny helped me either! One of the hardest things when I came back home was having to depend on others to help me get around.
“Physically It Was Hard To Recover, However Mentally Recovering Was My Hardest Challenge!”
When I came back it was the first time I had in weeks to get used to having a stoma, because I had so much going on in hospital and trying to recover from my surgeries I didn’t even have time to think about my stoma or the fact I had a “bag”. I knew it was there, and found it hard to accept it for weeks, I found it hard to tell anyone what I had done, the fact I had this bag on my stomach and what it did. It took a while to build my confidence again, to talk to people openly about having a stoma, to show anyone what I had.
When you go through the surgery some say you grieve … odd I know, I didn’t grieve because I had a bag but I did after I was told I would be very unlikely to achieve the goals I had always aspired to. Hearing this after having surgery to remove this awful disease thats held you back for all this time is incredibly hard to deal with.
As time moved on my confidence grew from the support of my family, friends and cancer survivor NGO family I have on social media, I realised this didn’t stop me – it gave me a new lease of life! I was determined to defy the odds I had been given and not let my ostomy stop me like my Tumour had done.
My Complications from Surgery & Chemo…
In 2014 I had a flare up that will live with me forever, all throughout the year I was in and out of hospital numerous times with uncontrollable blood loss and chronic fatigue where slowly my condition took over all aspects of my life! I have never felt so bad!! So in the December I undertook a Colostomy where I had my large bowel (Colon) removed. I was in hospital for about 10 days and back home for about 3 days. The 3 days I was home were incredibly hard – I had no abdominal strength, I felt weak, tired and like I couldn’t do anything for myself. Little did I know the worst was still to come……?
Soon after recovered from surgery pain and damn sutures which were daunting around my ass and my belly area. Who knows the worst was still to come. I got admitted for first 6 days in cancer hospital (AIIMS Delhi) for 6 cycles of Adjuvant Chemotherapy (VAC alternating with IE) w.e.f 7/4/2015 to 28/2/2016.
I lost my hair due to chemotherapy and it was hard to see myself in front of mirror. I was not able to engulf food and acute body pain and not able to walk too far. But I was determined to fight cancer and motivate other cancer patient not to worry and keep the faith on self. After 1st cycle I motivate myself, I should overcome of this disease and live my life fullest. When I went to hospital for 2nd cycle I maintained my health, my doctor was surprised to see my blood counts and my high spirit to fight with cancer. I was enjoying taking chemo and started going to office after taking chemotherapy. I had no chemo complications except mouth ulcers and hair loss. I used to take liquid diet rather taking solid. I must say “God helps those who help themselves”. But who knows your management people really not going to motivate you, after completing 4th cycle I got Pink slip from my office. Soon after losing job, my beloved wife left me for nothing. I was shattered and like to kill myself. I started thinking why this happened to me only. My mom motivates me “Everything would be alright, God does for good”.
Why Am I Determined To Fight The Stigma?
For anyone suffering with Colon cancer, Surgery can be a daunting prospect. I remember for many years during flare ups saying things like I would rather die than have surgery this is because society can make you feel that you will be unattractive, that its something that old people have, it smells, and it’s not normal.
I got myself into a situation where I would try and “live” and almost prefer to suffer the symptoms of IBD (Inflammatory bowel disease) then let others judge me. In the end after years of battling this disease I decided it was the right thing for me, now I am determined to show people and society that having a stoma and cancer survivor doesn’t change who you are and it doesn’t mean you’re not normal it means you can achieve anything you want to do, you can be attractive, and you can lead a normal.