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Charmaine Erasmus

I generally like things to run smoothly in my life, who doesn’t, but in the beginning of 2011 I did not realize that I was about to face a huge change in my life.

I had been diagnosed with Irritable Bowel Syndrome some years earlier so in January 2011 when I began to pass blood I did not pay too much attention, put it down to perhaps it was piles and it would go away, I dreaded the thought of going to a doctor knowing what kind of examination I would have to endure “just not for me”, I chose to ignore it... over the next 6 months it did not go away, the bleeding became more frequent, with the usual tummy aches, constipation/upset tummy.

Deep down within me I knew all was not well, the little word Cancer had passed through my mind, so thought I would “Google” my symptom’s - please I would not advocate anyone to self-diagnose this way, but this is me thinking should I need to worry. WELL!! My symptom’s ticked all the boxes for possible Cancer.

In July I plucked up courage and made an appointment with my GP, after listening to me he told me not to stress but needed to examine me to just check, after the examination sitting opposite him I saw that his expression had changed and he asked my husband who was outside to come into the room, that was when my heart dropped and got this rushing noise in my ears. He explained that he could feel something and needed me to go and see a General Surgeon who specialized in colorectal procedures, he immediately booked an appointment for two days later, when I walked out of his rooms I knew I had cancer, my husband Chris knowing me saw I had moved into that worry state – I worry about things that haven’t even happened yet, he tried to keep me in a positive space as he always has a positive attitude to life.

Two days later we were sitting in the Surgeons rooms, when he called me I chose to go in alone, after he examined me he sat me down, but before he could say anything I said to him “I know I have cancer” he looked at me surprised and said he was 80% positive the growth is cancer, but I would have to have a colonoscopy as soon as possible so he could take a tissue sample for a biopsy to be 100% sure.

I think I had sub consciously prepared myself that I had cancer and calmly told my husband when I came out the rooms, he was quiet as we walked back to the car, we were both getting our heads around what was ahead of us, I knew this was something I had to deal with, it was not going to go away.

On our way home my thoughts went to our son, daughter-in-law, 2 year-old grandson, my 81 year old Dad, my two sisters, family and close friends, how do i tell them?? at this stage I didn’t have too many answers to the questions they were going to ask, but decided I needed to speak to my family immediately, it was the hardest thing I had to do, I did it calmly, after the initial shock, they reacted so positive and that they were with me every step of what every lay ahead of me. It was a huge relief once I had spoken to everyone; I knew I had amazing support.

The day before my procedure I was given a “Prep” to drink, powder mixed into 3 litres of water to drink over a period of 1 litre per hour. First litre tasted not too bad, but Oh!! My goodness the last two litres were horrible, it’s bad enough to have to be within running distance to the loo, and have the world fall out of your bottom but at least this mixture could come out in milkshake flavours.

At 6.00am the next morning I was admitted to hospital, after the procedure my surgeon came to see me & said he had taken tissue samples but I should prepare myself for a fight, that it was advanced colorectal cancer, he suspected it was Stage 11 possibly moving into Stage 111, I had to see him in two days to confirm the results, unfortunately I was not on a medical aid so we needed to decide the next step.

I was very fortunate that with help of my surgeon, and through a state Hospital I got an appointment with a doctor at the Colorectal unit at Albert Luthuli Hospital the following week, I was admitted into Albert Luthuli for 3 days for tests, CT scan and MRI scan as this was the first step to see if the cancer had already spread to the lymph nodes and liver.

The first day they did routine checks and drew phials of blood, then I was taken to have the CT scan, the second day I had the MRI scan, the doctor said he would see me the next morning with the results.

It had been a difficult two days, alone in hospital, my life in the balance and trying very hard not to think dark thoughts, now a long night was ahead of me. The next morning I remember seeing him walking towards my bed with a file in his hand, I thought my heart was going to stop and I couldn’t breathe, he stood at the bottom of my bed looked at me then smiled and said all looks good, you still have cancer but its looks like it is still contained and no sign of spreading to any other organs, what a Relief!!! this was the first time I truly knew and felt I was going to beat this disease and survive.

I was fortunate to get an appointment with the oncologist the following week, as we sat in front of him he looked at me and said “Don’t worry you can be cured from this type of cancer”, he explained to me about colorectal cancer and the treatment I was to follow, the first step was to start chemo immediately and also radiation to shrink the tumour before they could operate. I was prescribed an oral chemo, Zeloda, first cycle was for two weeks, I remember walking out of the hospital so excited with my first box of chemo pills, feeling I had a weapon to fight the cancer.

After a one week rest from first cycle of chemo, I was sent to radiotherapy to prepare now for radiation, they did CT scan and a CT simulation to identify the area on my body that will receive radiation then mapped the area across my pelvis /stomach area and side of my both hips I looked like a noughts and crosses board and advised not to wet or wash this area for 6 weeks (28 treatments) OH no!! No more lying and soaking in the bath only basin bathes.

I started the second round of chemo in conjunction with radiation with 5 days on 2 days off for the next 6 weeks.

At my first radiation session I waited for a bolt of laser light... nothing, just the whirl of the machine moving around you and after about 6 minutes the session was over... WoW this was a piece of cake no pain... WELL!! into my 8th treatment some side effects kicked in... Besides feeling exhausted, my bottom internally & externally started to burn and felt like a swarm of wasps had moved in, it was painful walking and sitting, my friend from Pretoria phoned and I was complaining bitterly and within 2 days a package arrived from her with a soothing lotion especially for radiation burns, bless her … when I saw my oncologist he sprayed gentian violet to the burns which also helped, not a pretty site fortunately I could me see it.

I had been prepared for the side effects of chemo as I was on quite a high dosage, I lost my taste so resorted to adding chillies to my food to taste something, I had a rash on my arm, a little nausea and upset tummy off and on, I think I came off lightly compared to what others have experienced.

After radiation and last cycle of chemo the tumour had shrank enough to go ahead to operate.

8 December 2011, I was admitted to the Specialized Surgery Unit and my colorectal surgeon patiently explained to me that he would remove the tumour from the colon and re-join the colon, but it would have to rest and heal for about 6-8 months, I would then have a temporary ileostomy, this is an opening made on the right side of my abdomen about 5 centimetre diagonally from my belly button, the small intestine is redirected and brought up to the surface of the skin, this opening is called a stoma which allows poop to pass out the body into a pouching system placed over the stoma. The pouch (bag) consists of a skin barrier and a pouch, the skin barriers sticks to the skin of your belly, this is easily removed when needed and replaced with a clean one.

I was in theatre for 3 and half hours and woke up with my husband gowned and masked waiting for me in the recovery room, then up to high care for a few days, then back to Specialized Surgery ward. On day four I developed post op complications, projectile vomiting, then persistent tachycardia, I was battling to breathe, and had heart palpitations, I was rushed back to theatre suspecting that there was a leakage, thank goodness there was no leakage and now had a nasal gastric tube inserted into my nose to my stomach to remove excess fluids, after an increase of antibiotics my condition settled down, I felt like a science experiment hooked up to drips, morphine drip, drains, a bag and catheter then my veins also went on strike and collapsed every time they drew blood or changed the drips.

I was released 2 weeks later feeling very fragile and my husband became an instant nurse, cleaning, cooking, and looking after me, he became a pro at taking off and putting on my compression stockings which I had to wear for 6 weeks, recovery was slower than I expected but soon my energy & bounce returned.

At first it was scary and strange having this pouch attached to my stomach, I was shown how to take care of the stoma and changing procedures, but I decided to co-exist with this attachment, when I was told I did not need any more chemo or radiation I realized it was a small price to pay.

In August 2012, 8 months later I went in for a Barium Enema x-ray to check if my sleeping colon had healed enough to be put back into use, unfortunately the lower section showed a change and strictures (narrowing), I was sent back for a MRI scan, results came back with a possibility of inflammation or that the cancer had recurred. I went back to theatre for a colonoscopy to take tissue samples for biopsy, I needed all my strength to stay positive, I needed to go forwards not backwards, the results came back clear, no cancer, but unfortunately the lower section of the colon had narrowed in sections probably caused by the radiation treatment. The next option was to start a series of colonoscopies to insert a Boston balloon into narrowed areas and dilate to stretch the colon, this was very painful and I could only be given a light sedation at each procedure.

I had a number of these procedures over the following 6 months with only a small improvement, my surgeon explained that if they reversed the operation there was not a 100% guarantee my bowel function would go back to normal, I could end up going to the loo more frequently and have other issues, I could not accept an unpredictable bowel ruling my life, I had by now found I was managing having a colostomy and accepted it as part of my routine.

August 2013 I was back in hospital, for a bowel resection, it is a major and lengthy operation with the removal of lower part of the colon and rectum, the small intestine was reconnected and the part of the colon that could function was brought through to the surface of the skin, recovery is longer but emotionally easier to deal with, two week later I was discharged.

I have no regrets in my decision to live with a colostomy, this is the new ME. I researched all about “Living with a Colostomy”, and found there have not been many changes to adjust to, I do need to chew my food well, still eat healthy, certain foods I have learnt to stay away from, small changes to my wardrobe, and no one would ever guess I had a bag as they are so discreet. Most important was to find some humour in my new situation, unfortunately I have no control passing wind this does not happen often but will happen at inopportune moments, when it happens I blame a dog if there is one around, our cat does not sleep on my lap anymore and my 4 year old grandson Carter looked at me with puzzlement one day and said “Granny did you just fart” all you can do is laugh.

Today, after 5 years, I remain positive that I will stay in remission, I try and not sweat about the small stuff, and live in the HERE & NOW, the future is but a mystery, I thank my caring husband who was at my side for every appointment, my special family and friends for their unconditional love, support and prayers, they helped me fight to survive. My second grandson Cuan was born during this time and I am so fortunate to be able to be part of my grandsons lives, watching them grow up, they are my tonic for good health.

A quote I always remember: “Fate whispers to the wolf: “You cannot withstand the storm” and the wolf whispers back, “I am the storm”

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