Colon Cancer nearly killed me!

Reading this could save your life!

I’m sorry if that scared you!!   But it’s the Truth!

Sharing my Colon Cancer experience with you is very difficult because it requires me to revisit a dark and frightening place. A place where only hope exists with no guarantees of life. BUT not to share my story would be wrong. If only one person reading today can be spared the pain and horror of Colon Cancer, then I feel that sharing my story with you has been valuable.

 Brief Introduction to Colon Cancer:

Colorectal Cancer happens when abnormal cells grow in the lining of the large intestine (colon) or the rectum.

Colorectal Cancer is the second deadliest cancer after lung. It is the second leading cause of death after heart disease. Colorectal Cancer is the most common tumor type diagnosed in western countries. Despite improved outcomes and treatments, it remains one of the leading causes of cancer death worldwide.

Stage I:   Cancer is in the innermost lining (mucosa/submucosa) of the colon or rectum.

Stage II:   Cancer has grown into or through the outermost layer of the colon or rectum but has not affected the lymph nodes.

Stage III:   Cancer has spread past the lining of the colon and has affected one or more lymph nodes in the area.

Stage IV: Cancer has spread through the blood and/or the lymphatic system to other organs e.g. liver, lungs or bones.

Each stage is further subdivided making each patient’s individual case unique

My story:

In June 2011 our lives changed in an instant. I was admitted to the Emergency Room with excruciating abdominal pain and vomiting.

Following an MRI (Magnetic Resonance Imaging) the Doctors discovered that my bowel was both obstructed and perforated. Within fifteen minutes I was having major bowel surgery to save my life. During surgery the surgeon suspected something sinister and called in a pathologist. It was my husband who received the news that would change our lives. It was Colon Cancer.

The surgeon formed a Colostomy (A procedure that brings one end of the bowel out onto the abdominal surface to form a “stoma”. My stools would now drain into a pouch on my abdomen. She explained this was necessary to allow the remaining bowel to “rest” and that she could reverse it later if all went well.

Living with a Colostomy:

How ironic that following my graduation from nursing school I extended my qualifications to the area of stoma care. I had worked for an Ostomy Company for 4 years!. Never in a million years did I imagine that one day I would have a colostomy!! I remember waking up from surgery and amongst the many tubes feeling the plastic pouch on my abdomen. I asked the surgeon “Do I have a colostomy”? “Yes” she answered. My second question “Is it permanent”? “No” she replied, explaining that I would have it for about a year.

 Yes, I was grateful to be alive but living with a colostomy is life changing.

Let’s be honest here for a moment. When we want to empty our bowels, we simply visit the toilet. If we want to pass wind, we are aware and simply pass wind or can to some extent control this function. When you have a colostomy, you lose this control. Your feces are pushed by the action of peristalsis out into the pouch stuck to your abdomen. This could happen at any time. Wind from your intestines exits the same way without warning. Sometimes the pouch can fill up instantly and it feels like you are wearing a balloon on your abdomen. When this happens, you must excuse yourself and find somewhere (preferably outside) to release the air. The smell is very offensive. Certain foods like green vegetables would exacerbate this. I worried constantly about the smell. There are many different pouches available. The skin around the stoma however can get sore with the constant changing of pouches. A perfect fit is essential to avoid this common problem. Occasionally “explosions” as I called them occurred. This is when a large amount of feces expelled quickly and the entire full pouch simply blew off! Thankfully this only happened twice to me. (once when I was out!!) I had to embrace my stoma and make the necessary life changes because I had no choice. For many people having a colostomy is extremely overwhelming. I am fortunate to have a loving and understanding husband. For many people, living with a stoma brings body image challenges, low self-esteem and at times severe depression. We are all uniquely different. I decided to adopt a positive attitude and not allow my colostomy to rule my life. After several months I learnt which foods would activate my stoma and which foods to avoid. Using the small sports pouch, I was able to swim three times a week to build up strength. Perhaps I coped so well because I knew it was temporary. Many patients are not so lucky. Either way, you have no choice but to cope.

More Bad News:

The surgical team had also discovered an abnormal nodule in my right lung and requested a biopsy as soon as I was able.

After nearly a month in the hospital I was discharged and  went for the lung biopsy. I remember feeling terrified at the thought of a large needle being pushed through to my lung but there was no choice. The results revealed further bad news. The Colon Cancer had spread to my right lung so now we were dealing with Stage IV Colon Cancer. In 2011 the statistics were grim. Only a 5% chance of survival at five years! Today it is 14%. (still not great).

Chemotherapy started immediately. I was to have fourteen rounds at two weekly intervals. Each round meant spending the entire day in the Chemo room. This was not the chosen location to meet new friends from all walks of life, but we all had one thing in common. We were fighting for our lives. I lost several of my new friends during this time to Colon Cancer. Some days we would chat at length and on bad days we would simply give each other a knowing look of love and support. Such wonderful people of all ages taken from this world too soon by this cruel disease. 

Initially it took some juggling of medications to combat the extreme nausea and sickness. The treatment is cumulative so as the treatment continues you feel worse and worse. Chemotherapy was stopped temporarily in November 2011 for surgery; a Right Lower Lobe Lobectomy (Removal of the lung lobe containing the Colon Cancer) For the best possible outcome it was decided to remove the entire right lower lung lobe containing the tumor.

(We have five lobes. The right lung has three and the left lung has two)

This surgery is extremely painful and involves an approximate hospital stay of ten days. Even though I was fortunate to have a Video Assisted Thoracoscopic (VATS) Lobectomy the four incisions resulted in significant nerve damage. Many patients are not able to have this surgery via the VATS technique and continue to have traditional lung surgery. This is even more traumatic as a large incision is made and the ribs are forcefully separated to gain access to the lungs. This results in severe nerve damage.

The chest drain is also very painful when in situ and even though its removal was very uncomfortable there was some relief following this. I was grateful for the maximum Morphine pain relief. Fast forward 10 days and finally home. 5 days home and admitted to ICU with acute postoperative inflammation around the gallbladder area. Not uncommon, I was told, following this type of surgery. Fast forward 5 days and home again. Yay! The recovery was hard. The nerve damage meant I could not wear a bra. It was just too painful. If you are a larger breasted woman this is a challenge as not having any support is also painful.  Using a soft sarong, I created a homemade halter bra to put the “ladies” in and this worked for about two months. I then ordered a long-line bra. My husband (who is very good with a needle bless him) lined the bra with a very soft cotton. It was a year before I could wear my regular bra and even then, I had to add soft padding on the right side. 8 years later I still suffer from peripheral nerve damage in this area. In January 2012 Chemotherapy continued . This time via a portable infusion which I took home. Finally, in May 2012 Chemotherapy was complete and it was time for the Colostomy Reversal. In June 2012 I underwent the Colostomy reversal. I would finally be in control of my bowel movements once again. (Imagine feeling grateful for this most basic function!!)

People Ask: Did you have any symptoms or warning signs?

Simple answer: Yes. For about 18 months prior to diagnosis I experienced Extreme fatigue. Change in bowel habits. (I didn’t notice blood in my stool which is a common indicator for Colon Cancer). Abdominal discomfort. I did visit the Dr. several times and was misdiagnosed with an intestinal infection twice. Like many women I suspected that I may be gluten intolerant. I also suspected that I may be suffering from IBS (Irritable Bowel Syndrome). We know now that it was none of these. I had colon cancer for several years before diagnosis and didn’t know it. I was planning to have a Colonoscopy at 50 yrs (recommended age at that time) but was admitted as an emergency and, as they say, the rest is history. 

It’s a painful story isn’t it!  Lets change this into something positive!

Don’t Let My Story Be Your Story!!

Remember: COLON CANCER IS PREVENTABLE!

Younger people are now being diagnosed with Colon Cancer and dying from it. Because of this, in 2018 The American Cancer Society updated their screening guidelines. Adults of average risk should be screened at 45-50 yrs.( It was previously 50 yrs)

Having a first relative (parent, sibling or child that was diagnosed with Colon Cancer) 1st Colonoscopy at 35yrs.

The American College of Gastroenterology has stated that African Americans should start screening at 45 because they are at higher risk of developing Colon Cancer.

Let’s get this done!

Types of Bowel Screening: 

Colonoscopy:

An examination to detect changes or abnormalities in the large intestines (Colon). Following sedation, a long flexible tube is inserted into the rectum. A tiny video camera at the tip allows the Dr. to view the inside of the entire colon. This procedure takes approximately 30-60 mins. Suspicious tissue can be removed for analysis. Abnormal growths or polyps (clumps of cells that form on the lining of the colon) can be identified and removed for analysis and diagnosis Most colon polyps are harmless BUT over time some can develop into Colon/Colorectal Cancer). There is a three day at home prep for this procedure to cleanse the colon.

Virtual Colonoscopy:

A CT Scan (Computerized Tomography) reveals anatomic details of internal organs that cannot be seen in conventional X-Rays. It shows polyps and abnormalities without placing a camera inside the rectum. BUT it can miss small polyps and if the Dr. finds some you will then have to have a Colonoscopy.

Sigmoidoscopy:

An examination using a flexible tube to look at the rectum and lower part of the colon.

Fecal Blood:

A test to detect blood in the stool. (which can be a sign of cancer)

DNA Test:

Examines the stool for blood and suspicious DNA. This is very accurate for detecting Colon Cancer. If either are detected, you will need to have a Colonoscopy. The American Cancer Society currently recommends a DNA test every 3 years.

Colon Cancer is preventable!

I am one of the lucky few! Having been diagnosed with stage IV Colon Cancer I am now 8 years cancer free. I have been given a second chance. A chance to celebrate the accomplishments of our two daughters. The opportunity to watch our eldest daughter get married. To experience the joy of our grandson. Cherish time with the man I Love. To nurture a new career path.

For many it’s too late!

My advice is to you:

Remember my story!!! (many have the same). Listen to your body. Don’t use your busy life as an excuse to put off this life saving procedure. Remember IBS can have similar symptoms to Colon Cancer. Talk with your Dr. and arrange to have a Colonoscopy.

It Really Could Save Your Life!

Quote for this Post: This is a wonderful day. I’ve never seen this one before. (Maya Angelou)

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