Fiona Narotam Mohanllal Brave & Beautiful Ambassador
- Ulcerative Colitis
Cancer is a disease that most people believe will not happen to them.
When we think of cancer we think of words like chemotherapy, radiation, suffering, pain and of course the dreaded word DEATH! After suffering with a longstanding disease commonly known as Ulcerative Colitis, for close onto 22 years my reality had changed in seconds.
Ulcerative Colitis in a nutshell is an auto immune disease which attacks and causes inflammation to the large intestine (colon) and rectum. It produces sores or ulcers with frequent passing of stools accompanied by blood and mucus. There is a lot of abdominal cramping and bloating. It is often controlled with various medications such anti-inflammatories and immune-suppressants. There is no cure for this disease nor do they know what induces it. With such a disease one has to undergo an uncomfortable procedure known as a colonoscopy mostly once a year to check for any abnormalities such as polyps, strictures and cancer.
Briefly a colonoscopy is basically where a camera is inserted anally whilst attached to a thin pipe. This procedure is usually carried out after they “’clean you out” the day before. An unpleasant, not to mention invasive process to say the least, but a very good way to detect for the afore-mentioned abnormalities.
My story began on Thursday 3rd November 2016 when I went in for my annual colonoscopy after complaining and suffering with a kidney infection. After drinking two litre’s of the dreaded Klean-Prep solution which tasted vile to say the least and being cleaned out the day before, I was ready for the procedure. After being wheeled in and mildly sedated, the procedure was completed rather quickly which at the time didn’t strike me as anything too sinister or serious. I was so wrong! The gastroenterologist eventually came out to see me as I sat there waiting to be given the all clear to go home. He used the term ‘bad news’ and broke the most shattering news to me; that I would need surgery on my colon and rectum as there were several polyps in the rectum which had been removed and sent for biopsying. He bluntly told me that my colon had narrowed to the size of a pencil and that he could not get the pipe passed 20cm into the rectum. If he forced the pipe it could have caused a possible rupture and that would be worse as I could die from the leaking toxins. He wasn’t sure about the extent of the surgery that needed to be performed at the time, as the biopsy results would determine that. He made an appointment for me to see him on that Monday 7th November to go over those results. I asked him the dreaded question “Is it Cancer?” to which he replied “No”.
How he came to that conclusion without the biopsy results, I will never know!
Panic and fear quickly set in after hearing the words surgery and the thought of having to wait an entire weekend to know my fate seemed like an eternity, not to mention torturous. I remember crying a lot, praying that surgery wasn’t the answer. I even tried to convince myself that maybe I wasn’t sedated enough and had tensed up that’s why he couldn’t perform the procedure properly. I researched every possible scenario that could happen and possible alternatives and questions for him. I am afraid that nothing could have prepared me for the news that awaited me that Monday.
Finally, the dreaded day had arrived for me to receive the results of the biopsy and the extent of the surgery that needed to be performed. Thankfully I had the support of my parents, husband and family to put one foot in front of the other. My legs felt like lead, my heart was pounding. Tears were flowing in abundance and as I sat down on the chair in the doctor`s office, he uttered the same dreaded words….. “Bad news!” Its cancerous and you have to remove the entire large intestine and rectum.”
That sent me into a tail spin. My mum broke down and ran out the office in shock. I started firing every possible question, “where exactly is’t?” “How could this have happened? everything was fine, the Ulcerative Colitis was in remission”. He could not answer me without a CT scan being done. Luckily, I had my sister in law, Dr. Reshmi Mohanlall, with me who managed to catch a glimpse of the biopsy results report from the polyp taken from the rectum. It stated the words non-invasive malignancy and she immediately assured me that it meant it did not spread from what she could see.
Obviously, there were no guarantees because the pipe only went 20cm up. I remember being in incredible shock not being able to move. I almost fainted. I could not process the information given to me. My entire family were terrified and afraid of what the steps ahead held. So many thoughts flowed through my head, the most prominent one was, ‘Am I going to die?’
I felt like all that happened was surreal, that I was having an out of body experience. I could not accept this reality. Difficult family decisions needed to be made as to where and who would perform this surgery.
We finally settled that the surgery would take place in Cape Town under supervision of the well- known and best Gastro colorectal surgeon in the country: Dr. Michael Elliot who specifically specializes in these types of medical issues.
Before we could do anything, a CT scan needed to be conducted to see the extent of the cancer. Most importantly if it had spread to any other organs. My heart was pounding waiting for those results. I cried so much. My husband and family were trying to give me the courage, but my anxiety levels were through the roof. I felt like a zombie. I did not know what was in store for me. Minutes felt like hours!
Finally, a kind radiologist who had read the results could see my anxiety and called my family and I in to tell me the outcome. He told me there was a tumor in the rectum 2cm large and he could not determine if the left- hand side of the colon was cancerous as the anomalies were not consistent with cancer. It looked more like inflammation to him rather than cancer.
I felt relief wash over me as we all thought that the cancer was still in its early stages and contained within the colon and rectum which was in accordance with the biopsy results of non-invasive malignancy. I felt like I had been on an emotional roller coaster and did not know how to get off. I knew that the surgery was indeed inevitable and had to happen as soon as possible, so off to Cape Town we went which was the next day the 9th of November 2016.
The surgeon’s rooms were based at Life Kingsbury Hospital, Claremont and the day of my appointment had arrived. I was a nervous and emotional wreck. Upon arrival I was greeted by Dr. Elliot`s friendly receptionists Chantal and Tamsin, who really took a personal interest in my case. They were so efficient that all the medical documents and scans were already in their possession, which made things easier for me to deal with the real issue at hand. Dr. Elliot was a kind and gentle doctor who also seemed to want to get to know me first before delving into the issue at hand.
After that brief introduction he asked me a series of questions explaining to me that he would need to perform his own set of tests and examinations first. I agreed to that which meant a scope in his rooms with other tests. Knowing that he could not get the pipe past the 20cm mark he took a biopsy of the tumor. I was so frightened that I did not even feel the poking and prodding of the pipes and gadgets. He had a friendly assistant, Mags that tried to keep me as distracted as possible but that was super difficult given my circumstances.
He then told me what I had been told before, that the entire large intestine and rectum (along with the nodes) had to be removed and that he could not guarantee that the cancer had not metastasized as he could not get the pipe past a certain point, so there was no way to tell what was behind it. The only time he would know for sure was when he went into operate. The womb looked clear from the ultrasound but again nothing was definitive.
The date for the surgery was set for the 29th of November 2016. He explained that it would be a 6-8 hour surgery and that the recovery would not be easy but doable. He put me in contact with other patients who had their entire colons and rectums removed so I could hear their inspiring stories. I asked him if I would need chemotherapy/radiation and he could not commit to an answer as the colon and rectum would need to be biopsied after the operation. The head nurse in the GIT ward, sister Michelle (a jolly and pleasant lady) further explained to me that I would have an ileostomy bag for a minimum of three months.
This simply is a procedure where a stoma (an opening in the ileum (small intestine) is created on the right side outside of the abdomen for waste to pass through and empty into the bag. They also pull the rest of the small intestine down and create a pouch to serve as a the new “rectum”. This would act as a reservoir for waste to fill and pass through normally once the small intestine (pouch) is connected back to the sphincter muscle. So, this would be a two-step operation to allow the pouch to heal.
The first one being the major one and the second one would be the reversal (anywhere from half an hour to an hour and a half). She provided me with booklets regarding the diet for the stoma bag so as to avoid any blockages and how life would be with the bag. She stated I would be in hospital for two weeks for the first operation. Four days in ICU with several pipes and drains, and machines connected to me. The pipes included a site drain (known as the Elliot drain), a rectal drain, a nasogastric tube down to the stomach (to prevent me from gagging), an epidural in my back to numb me from the waist down for pain. I would also have to wear medical stockings on my legs along with insulators so as to avoid any blood clots. I would also be fed with a bag called TPN (Total Parenteral Nutrition) which would allow the gut to rest. This meant a needle had to be inserted in my neck, going into the main artery of my heart. I would also have to have intense physiotherapy to recover.
I was so overwhelmed with all this information, thinking of the pain I would be in and how uncomfortable I’d feel not being able to move. I could not process it all .I was also so nervous and terrified and the two week wait resulting in my anxiety levels going through the roof. I kept on thinking that the cancer would spread and needed constant reassurance from anyone and everyone. It was a nightmare but my husband, Nivan Mohanlall, and parents stood by me giving me courage to do this. They distracted me daily but the wait itself was challenging to say the least.
November 29th 2016, the day of my surgery arrived. Tears flowed like a waterfall! I was already admitted the day before to allow me to meet Dr. Elliot’s team of doctors which ranged from the Physician, (Dr. Harripersad) and the Anaesthetist Dr. Van Zyl).
I also had my blood drawn to distinguish my blood type as I would need a blood transfusion to be done after the operation along with the other afore mentioned drains and pipes sticking out of me.
Emotions were, high and the fear suddenly became real. Being wheeled off to theatre was the most traumatizing and challenging experience of my life!
I remember waking up in ICU screaming in unbearable pain. When I was slightly more conscious, I recall being surrounded by my parents and husband. I kept asking the million dollar question “Did it spread?” “Where were the tumors?”. I could not move with all the pipes and gadgets attached to me. The look on their faces was one of concern and somber looking. It didn’t seem right, I knew and sensed something was wrong. They tried to hold it together. I was persistently asking the same questions over and over. My father in a quiet and disturbed voice uttered the words “It came out of the colon”. My worst fears were realized, I felt this terror wash over me. My heart rate escalated. The heart rate machine went crazy. I tried to move my hands to feel if all my limbs were intact. During the course of the day the physician met with me and broke the most horrific news that my family had tried to keep from me!
He said that I had a hysterectomy! Tears rolled down my face. I could not handle what he told me. Lying there alone and afraid I could not believe that this is what my life had come to.
Around 7pm that evening the surgeon along with my family took me by the hand and explained that the cancer had metastasized to the womb. It was an aggressive form of cancer so 25% of the womb already had cancer. It had to be removed along with the left ovary only. The right ovary was still intact. Also, a portion of the bladder was also removed and so I had a catheter for twelve days to allow the bladder to heal but was assured I would have full function of it in the future.
Again, the tears streamed down my face as the reality hit that I would never have kids the conventional way. I still had a right ovary so this left me with the option of surrogacy or adoption. At this point I didn’t even have one child so the news was hard hitting almost surreal. I love children and I always dreamt of having a family of my own one day.
The worst part was I was asleep when this decision was made with my husband and family, so my consent was not given, though I know I would have chosen the exact same thing. I knew chemotherapy was a must at this point even though it wasn’t confirmed. Dr. Elliot, the surgeon explained to me that he had to make a choice to save my life or leave the womb and he decided to save my life and remove what needed to be removed. He confidently assured me he got all the visible tumors (which were 2) out. I knew I would have done the same but it was and still is a bitter pill to swallow.
This set in motion the beginning of a grueling recovery and journey. One which would change the course of my life forever. I also had to get used to the ileostomy bag. Luckily they were stoma nurses, Jane and Anneke, who taught me how to care for the bag and my skin. Again, all this information was too overwhelming and took some getting used to with several accidents happening which left me feeling depressed and emotional.
To make matters worse, twelve days later, the biopsy results from the surgery had come back. The surgeon stated that 40% of the nodes removed had cancer which wasn’t good and chemotherapy was a must as the cancer was in all likelihood in my blood stream and needed to be eradicated. I was lucky in that he said I would not need radiation, but the thought of chemotherapy scared me.
Visions of what I saw on TV filled my mind. Thoughts like hair loss and being sick took over my mind. Having to deal with an ileostomy bag was hard enough with the constant leaks and burning skin from the enzymes of the small intestine. Eventually they found a product that suited me, and I remember lying in the ward thinking to myself would I ever get used to this.
After weeks of practice and hilarious moments such as waking up at home at 3am in the morning only to find that I didn’t clip the opening of the bag and messed the floor, the bag although temporary became a part of my being for 8 months. I was lucky in that I had the assistance of the Durban stoma clinic under the leadership of Pam Welch and Jocelyn. Their kindness and support in my journey did not go unnoticed and was greatly appreciated. They gave me the confidence to eventually change the bag by myself at home without their supervision with the help of my caring mum and husband.
After weeks of a grueling recovery in both Cape Town and Durban it was time to move onto step 2 which was an even bigger challenge: meeting my oncologist and starting chemotherapy. I had such an unsettling feeling, being afraid and nervous as I entered the doors of the Durban Oncology Centre. To my surprise I was greeted by a friendly lady named Dr. Lucille Heslop, who in my opinion is the Rolls Royce of oncologists in Durban.
She believes in treating each patient as an individual and not like a block of wood. She has a very kind, loving and warm personality to her as well as a lot of empathy for her patients. That was exactly what I needed to face this challenge head on. On my first visit she explained the process I would be facing for the next 6 months. I began to cry as she spoke about the side effects of the chemo like losing my hair (luckily that never happened to me) and the nausea etc.
She quickly reassured me that we were treating a risk as the surgeon had got it all. So, it was more a process of cleaning the blood off any cancer cells that may have been left behind. Also she deemed it as stage 4 cancer and told me that’s merely a number and that this is treatable. I must admit hearing all the side effects of the chemo did terrify me to no end especially the diarrhea aspect and how that would work with my ileostomy bag, but as always, I was never alone in my journey.
I had the support of my family and most importantly my incredible husband Nivan. The oncologist opted for an IV chemo instead of the tablets as she was fearful I may not absorb the tablets without having a colon. Accompanied with that fear we needed to treat it aggressively.
I was placed on a drug called Folfox 5 which comprised of 5fu (the key component for all colo-rectal cancer treatments) and Oxaliplatin. I was also placed on Avastin which is a new drug on the market and is not chemotherapy but known as a monoclonal antibody. She also wanted me to have a port inserted. That process was slightly uncomfortable because local anesthetic was used.
The positive side of having that was that they would not need to poke and prod me all the time looking for veins. I also had to undergo a PET-CT scan which revealed minor cellular activity on the surface of the liver (not in the organ itself which was great). She assured me the chemotherapy would kill that cellular activity. I started chemo on the 23rd of January 2017 and underwent several blood tests such as tumor markers, ultra sounds and CT scans during the process of my chemotherapy.
I recall sitting in the chemo suite for the first time. Looking around at the people suffering with all different types of cancer I started to cry. Again it all felt so surreal and I was having an out of body experience. I felt over whelmed and scared but my husband and mum held my hand and I knew that it had to be done if I wanted my life back or a chance of a “normal” life. I underwent 6 cycles (12 treatments) every two weeks for two days which involved me bringing a chemo pump home for two days and disconnecting (removing the needle) on day 3. This process ended on the 5th of July 2017.
I was indeed lucky in that I did not require radiation but having the bag and undergoing chemotherapy was not an easy procedure and I had to be on a regimen of anti- diarrhea medications such as 6 Imodium a day and Codeine Phosphate when necessary. I also kept a journal (and still do) of all the food I ate, the frequency at which I emptied my bag, the consistency, my fluid intake. I did this to establish a pattern and also kept records of every medication taken and its side effects along with what side effects I was experiencing with the chemotherapy.
This assisted the doctors and I to decipher which foods caused diarrhea and when the chemotherapy side effects were at its worst. I was also placed on a patch called Estradot 50 and 25 to regulate my estragon levels (as I did not have a womb and one working ovary which chemotherapy interferes with). I also slept a lot as the chemo drained me, but this assisted in my body healing faster.
Having no colon an individual must realize that diarrhea is a common aspect (even without chemotherapy). The positive side of having removed my colon was that the Ulcerative Colitis was cured and I never had to worry about constipation again. A funny thought but true.
Finally, a month after completing chemotherapy I repeated my PET-CT scan, I was in full remission with my tumor markers returning to its normal levels (so I thought). The next step in my journey to recovery was the reversal of the ileostomy bag in Cape Town again under the care of Dr. Elliot and his team, which brought about its fair set of challenges.
I went for my reversal on the 15th of August 2017. This process was anxiety provoking as the flood of memories from the previous year came rushing back as I stepped into the hospital. As always, I was greeted by the friendly nurses and staff members who remembered me from the year before which made me feel more at ease. With this procedure the stoma created in the first operation is removed and the pouch that was created internally starts to function as the new “rectum”. Being wheeled back into theatre I started to cry trying very hard to keep my composure. The reversal went ahead without complication and I was due to stay in hospital for an estimated 9 days without having to be in ICU or having several tubes and pipes attached to me.
The surgeon had told my family and I that the surgery was a success though it was a difficult resection due to the scar tissue, but he did not see any unusual masses i.e. tumors (cancer). I was back on the TPN which fed me through my neck so as to ensure I did not lose any weight and to rest the gut. I was relieved at the success of it all and thought to myself this is not so bad and had been passing stools normally up to 12-15 times a day (a norm after this type of surgery).
I started off on a normal liquid diet then slowly progressed to mixed fluids (basically liquids with a dairy component to it) then worked my way up to soft solids and the TPN was removed a few days later. All of a sudden things took a turn in the wrong direction. The cramps had began which were sharp stabbing pains making me feel as if I was going to die. They told me that it was standard as my gut was getting used to functioning normally again after 8 months. Unfortunately, the cramps became too unbearable which created a setback in my recovery as I had to have the TPN placed back in the neck for the gut to stabilize itself.
That was quite a traumatizing procedure as I was awake and merely given local anesthetic. My mum and dad stood by my side through it all and I had finally settled down. The TPN was left for another 7-9 days which was not fun as my movement was restricted. This found be back at the starting point having to work my way up the ladder from liquids to soft solids.
Again, disaster struck. Two weeks after this horrible nightmare began I landed up with an ileus (a sub-acute obstruction) and I was rolling on the floor with debilitating tummy cramps. In a nutshell this means my gut decided to go on strike. Disappointed and despondent there were talks of taking me back to theatre (which meant a big cut and ICU again) as it was thought that the scar tissue was blocking the flow of food.
Horrified at this suggestion and refusing to go backwards another option was still available. A nasal gastric tube was inserted, while being conscious, pass my stomach to my small intestine to feed me small drops at a time. This was done in order to get my digestive system operational again. Traumatic yes! I was in shock after that.
I became depressed, I wanted to just give up at this point, but my family didn’t let me. Also this restricted my movement further because the TPN was still inserted in my neck. This left me with a phobia of eating food, worried that it might cause an obstruction. I had to chew my food very carefully (and still do) and introduce new foods that differ from my stoma diet slowly.
I was more determined than ever this time and again commenced at the starting point of liquids, mixed fluids and then onto soft solid foods. Thankfully my perseverance paid off and I was finally discharged with a total stay in hospital of 3 weeks as opposed to 9 days. My “new normal” took some getting used to as it meant passing stools a lot more frequently (between 12-15 times a day) with the absence of my colon.
I will never be like a normal individual of going once a day but like the bag it becomes a part of your being and was happy to say the frequency settled to 6 times a day. I felt like I was finally on the road to recovery and that for the first time things were going to be fine. I could see hope and the light at the end of the tunnel. This, however, was somewhat short lived.
After the process of my reversal I had to go for my regular check up with the oncologist, Lucille to repeat my tumor markers. She did warn me that it would be elevated and not to be alarmed. It is important to note that elevated tumor markers don’t necessarily mean cancer. It could be raised for numerous reasons such as infection or inflammation.
My first tumor marker was done, and it was elevated but Lucille did not seem alarmed as I just did have surgery and the inflammation possibly needed to settle. She did tell me that we would be cautious and monitor it so we repeated it again two weeks later. To my dismay my worst fears came true. The tumor markers did not decrease as we expected it to do. They were elevated at an all, time high.
Lucille immediately told me that a PET-CT scan had to be performed again because she predicted some cancerous activity. I could not believe what I was hearing. I could not go through all this again. As foreseen I had relapsed and the cancer was back. This time on a cellular level. There were 2 spots on the surface of the liver again and 8 places on the outer surface of the small intestine. Luckily, there was no organ involvement this time so no surgery was required. Admittedly tears began to flow and the same fears crossed my mind again. I was only in remission for three months. I was fearful but knew that chemo was inevitable.
I resumed chemotherapy on the 7th of November 2017, again with IV treatment this time, but a more aggressive approach made up of CPT 11 (Irinotecan) and 5FU together known as Folfiri. We are currently treating until the tumor markers are in the normal range and the PET-CT Scan is clear (which thankfully it is). So, we are looking at a minimum of 4 cycles (8 treatments).
What we learnt from this relapse is that I now need to be on a maintenance plan which will consists of Xeloda tablets and Avastin IV once a month. This will be the plan moving forward.
I am currently still undergoing chemotherapy, but I am hopeful I will eventually in the future be able to live a “normal” and stable life cancer free. I wish to use this experience of mine to motivate and inspire others and let them know that no matter what the circumstance or how bad things may seem cancer is not insurmountable or a death sentence.
Also to take this opportunity to thank my dear husband, parents and family in law for their unconditional and unwavering support. To my dear husband this is us now. Life has handed us an interesting card with cancer and although we both prefer not to be faced with such a challenge, we have also searched for the good. You have been my rock and greatest blessing. Your support and ability to pick me up when I need it most is most admirable in my eyes. You were definitely sent too me by God above and our love for each other has never been stronger.
To my parents you both are my inspiration and role models. You both give me a reason to fight every day and thank you for always being there for me. There are no amount of words to express my love and gratitude to you both.
Being diagnosed with cancer is without a doubt the most terrifying experience for any individual. It can take away so much from a person but it can also bless us in so many different ways. It provides us with life lessons we often take advantage of. It can offer individual’s a unique perspective and makes us treasure each and every moment as if it is our last.
Most importantly it allows us to live in the moment and never take anything for granted. The simple pleasures are more appreciated. It makes your relationships stronger. A person is never the same after Cancer. There is a strong awareness, sense of appreciation and clarity to the little as well as big things in life. Support of friends and family is key when dealing with a disease of such a serious nature as well a positive attitude to beat the disease.
No one ever wants to have to go through the side effects (both physical and psychological). Days after chemo isn’t always easy but it does pass. Some days are harder than others and there will be times you feel like giving up and it feels like the end, but it is crucial to keep hope, faith in God and your ability to survive alive.
If you can conquer it with your mind that is half the battle won. A simple profound statement that to many may seem like a cliché but it is in fact true. I believe that setting future goals, journalizing experiences and moving around also assists in the healing process of not only cancer but any illness. Also, faith and belief in a higher power is paramount in overcoming any obstacle and continues to assist me to keep moving forward.
The road to healing is paved with different methods and beliefs so finding what works for you is crucial. Hope is possible. Possibility is possible. To those who are facing this dreaded disease stay strong, courageous and remain positive because you control the cancer it does not and should not control you. So, let’s put the CAN back into cancer and know that if you are going to deal with cancer you might as well deal with it with a smile.
Finally I am also thankful of the many friends I have made along the way on my journey and the friends I continue to make. This story is threefold in that I hope it assists people not only suffering with cancer but also those who have an ileostomy bag or who have been diagnosed with Ulcerative Colitis.
In my experience colonoscopies should be conducted twice a year as opposed to annually as advised to by doctors. What better footprint to leave behind than to inspire to aspire others. The self growth that comes out of a journey like this is invaluable.
The two quotes I would love to end of with is “Never give up. Never lose hope. Always have faith. Trying times will always pass as they always do. Just have patience, your dreams will come true. So put on a smile. You will live through your pain. Know it will pass and the strength you will gain.”
“Never forget how far you’ve come. Everything you have gone through. All the times you have pushed on even when you felt you couldn’t. All the mornings you got out of bed no matter how hard it was. All the times you wanted to give up but you got through another day. Never forget how much strength you have developed along the way.”
Lastly, Be Brave, Be Strong, Be Beautiful, Be YOU!