Patient Stories

• Rachel
• Mary
• Cath
• Claire
• Kate
• Mark
  

Rachel

Six years ago, a few months out from my 41st birthday and training for a Duathlon, I wasn’t feeling as well as I should.  After several months of training I was not expecting my legs to feel like lead while running and, disappointingly, sometimes I just didn’t have the energy to complete the run segment after the cycle. Maybe I was overdoing it?

The tiredness I was experiencing was overwhelming. It was not unusual for me to fall asleep on the couch late afternoon after work, and I thought it strange that approximately one kilometre into my training runs I had an urgent need to go to the toilet. I was also aware of a change in bowel habit, and blood in my bowel motions. However, I thought I knew best and easily had an explanation for all these symptoms. It was easy to put the change in bowel habit down to increased exercise and the blood in my bowel motions to haemorrhoids - which I had experienced during pregnancy. As for the tiredness, I was a busy Mum, working part-time and juggling all manner of responsibilities, so I accepted this as part of the territory. It was only through blood tests, ordered by my GP’s practice nurse that showed my iron levels were on the low side.
This new knowledge combined with the other symptoms I was experiencing, made me feel rather uneasy. My GP arranged an appointment with our local endoscopist and a colonoscopy was planned for five weeks ahead.

Thank goodness the colonoscopy was booked, as in this short space of time my bowel habit had changed dramatically to the point where each bowel motion was a blood- splattered explosion and the bleeding became much worse - I knew deep down that something was not right. However, nothing quite prepared me for what I was about to hear.

The colonoscopy revealed a tumour in the rectum. To say this diagnosis was a huge shock would be an understatement. Surely I was too young to be affected by colorectal cancer, and I was fit and healthy - or so I had thought.  My husband and I were completely blown away - unable to absorb all the horrible details. At this point in time I just wanted to be another person in another place.

The hardest part was telling our families and our children who at 12 and 14 years of age were old enough to understand some of the implications of a cancer diagnosis. I was keen to appear normal in front of them, which at times I really struggled with, and it was always a relief when they went off to school so I could have a good cry. I couldn’t sleep and had absolutely no appetite. Physically, I felt dreadful - I was exhausted. Emotionally, I was tormented by fear and irrational thoughts.

The next couple of weeks were a blur of appointments and tests. Fortunately I have private health insurance, so didn’t encounter any long delays. The turning point for me was meeting my colorectal specialist. I was in very capable hands and I felt so much better for having a plan in place and the all-important date for surgery finalised. Until the surgery was completed, the extent of the cancer would not be known.  

The time from this appointment to the surgery dragged interminably. Some days I felt more positive than others. I received many lovely phone calls and messages of support which definitely lifted my spirits. I sometimes felt very emotional when I received beautifully-worded cards and gorgeous bunches of flowers. Everyone was so kind. We made an effort to keep the family routine as normal as possible for the sake of the children and life on the outside appeared ordinary. On the inside it felt anything but ordinary.

Feelings of apprehension and concern soon disappeared, when on the morning following surgery I was told everything had gone really well. The cancer had been detected at an early stage. It had not spread and chemotherapy would not be required. I cannot begin to describe the feeling of pure elation and relief I felt. I’d had the best possible outcome. This good news made recovery from the major surgery and dealing with a temporary ileostomy so much easier.

The surgery was rather technical, with part of the colon removed as well as the rectum. I have an impressive new rectum called a J-pouch, made from a part of healthy colon. This surgical technique eliminates the need for a permanent colostomy.

Initially I found the concept of an ileostomy totally repulsive. It took several days before I plucked up the courage to even look at the stoma, but after a short time I came to grips with changing the bag and by the time a couple of weeks had passed I was a pro!

Recovery was slow and uncomfortable and I was impatient, wanting my old life back as soon as possible. I quickly realised that if all I could manage in those early days was a shower, then I was doing well. The expression “pain in the bum” took on a whole new meaning for me.

I never felt any sense of affection towards my stoma like I had read about. This was probably because I knew it was only a temporary measure to allow the bowel to heal. The countdown was on from day one until I could have the reversal surgery. This I had eight weeks later, which on reflection was too soon. I had only just recovered from major bowel surgery and I was going back for more!

The recovery phase from the reversal surgery was completely different. I never knew the simple act of going to the toilet could rule my life. The J-pouch was adapting to its new role of functioning like a rectum and as my specialist had warned me, this could take a while to settle down. Eventually it did. Within six weeks of this surgery I was stepping back into my running shoes, and a few weeks later I was back on my beloved bike. I was ecstatic.

My story highlights the importance of early detection. Bowel cancer outcomes can be much more favourable when detected at an early stage.

I also want to emphasise the importance of knowing the symptoms of bowel cancer, plus not falling into the trap of assuming you know the reasons behind the symptoms. This nearly cost me dearly.

If in doubt, get checked out!

I’m incredibly grateful that I have gone on to lead a comparatively normal life. Having had bowel cancer has not hindered me in any way. I still run, swim and cycle regularly, with my greatest achievement since the surgery being the completion of the 101km Marlborough Grape Ride (the only difference now, is on a long ride I have a roll of toilet paper discreetly tucked into my cycle pocket!)

I have immense respect for my specialist and his team, and the love and support I received from family and friends was truly humbling. The more urgent and frequent bowel motions I live with today are a small price to pay for this wonderful gift called life.

Mary Bradley

     Click here to view a video of Mary's story

Cath Henderson

I didn't expect this. The year before had been horrendous, family deaths, Hubby's hip replacement failing, medical misadventure they said, and his many hospital trips. I remember thinking on New year's eve, next year can only get better. Wow was I wrong.

I knew the frequency of my bowel motions had increased, slowly, over time.
I was going for my checkup and Hubby said ask about this. The doctor did the finger trick, said it is probably a virus, but to be sure I should have a colongraphy.

I had this 11am the following Thursday. Meanwhile I had looked up my symptoms on the internet and decided I had irritable bowel syndrome. 3pm, the doctor rings me at work, come in now !

I just knew then, CANCER !

Hubby and I went straight there, to be told - probably cancer, and probably curable.
My only symptom was looser, and more frequent bowel looser motions, no blood, pain, loss of weight, nothing.

Telling my daughters was the hardest. I was their Mother, I was supposed to be there for them, not me leaning on them. One was expecting her first child, I should be supporting her, not the other way round. However they shone in their strength and support.

After the tears, the why me, the death thoughts, I decided to beat this, my first grandchild was due soon, he needed a Nana. The worst thing is the fear of the unknown, the loss of control of your body, your life is suddenly in the hands of complete strangers!

I have the various tests, then 6 weeks later the operation. I was positive it would be a success, I just wanted this cancer gone. I was asked to attend the birth of my first grandchild 7 weeks later. I so wanted to be there, I just had to be well.

I was told I would probably not need one, but I woke with an ileostomy stoma & bag.
I had not checked out stomas. I did not expect this but after days of hating it, I realised that I was ALIVE, and if this helped save my life, so be. The stoma was removed by an operation 18 months later, such a short time really.

My hubby was a tower of strength, my rock, throughout. I discovered the best way for me to cope with the uncertain, the tests, the wait etc was to not think about them. Even in the waiting rooms, I refused to think about it.

There are positives, brought a caravan, entered real estate, something I now had the courage to do.

Having cancer does this, gives you the push, the oomph to get on and do things.
People asked - how do you cope with cancer - but what choice do you have? None, you have it, so be positive, and get on with life.

Don't get me wrong, there were many bad days, and I'm still having problems, but I'm here, and alive.

Claire Wilson

It was around February 2010 that I became conscious of my symptoms.  I was living with my partner, Yoshi in the States studying towards a MA in Geography.  I remember going on a mountain bike ride and experiencing periodic severe lower abdominal pain.  As time progressed this pain would become more frequent.  Most nights when I lay down I could feel a hard lump in the lower, right hand side of my abdomen.  I was consistently getting bouts of diarrhea.  I put these symptoms down to the stress of trying to get a thesis done, and a few too many carne asada burritos. 

I visited my GP around this time for a cervical smear test and I mentioned these symptoms.  She couldn’t feel the mass because it was semi mobile and, at that very moment, had floated away from her touch.  However she ordered an ultrasound and blood tests.  The blood tests revealed I was anemic, a classic symptom of bowel cancer, and I was advised to take iron pills.  The ultrasound detected lesions on my liver, so an MRI was ordered.  From the MRI the lesions were diagnosed as hemangiomas, or non-threatening ‘birth marks’ often found on livers.  I was advised to get a colonoscopy.  However, I decided that going to Central America was a much more enticing option.  I had just graduated and I wanted to do some traveling with Yoshi before I headed back to New Zealand, while he undertook research for his sabbatical.

Upon returning to New Zealand the pain was becoming more frequent and severe.  I was also rapidly losing quite a lot of weight unintentionally.  I visited my GP who explored the possibility of coeliac disease.  The tests came back negative.  I visited another GP and became uncharacteristically hysterical about the pain I was experiencing.  Another ultrasound was ordered with the results prompting my GP to urge me to go to Southland hospital.  This was followed by a biopsy, a colonoscopy and then surgery to remove the primary tumour in October last year. 

I am 29 years old and I have advanced colorectal cancer.  The diagnosis in America of hemangiomas was incorrect and I have metastases in my liver, lymphatic system and lungs.  This cancer is aggressive.  I have had six rounds of chemotherapy, three on the CAPOX regime and three on a combination of FOLFIRI and a monoclonal antibody called Avastin, the latter of which is funded by my US insurer.  Unfortunately my tumour marker count and liver function tests are all trending in the wrong direction.  Next week I am going to try a different combination with FOLFIRI and Cetuximab, another type of monoclonal antibody.

On a personal level I don’t identify with the battle analogy that is often associated with cancer.  I feel more like I’m on a slow moving train wreck with the cancer driving, me riding shotgun, and my friends and family all standing on the platform.  However I still maintain some hope.  My oncologist, Chris Jackson is working hard to put the brakes on.  I feel very fortunate to have an oncologist who is so supportive, knowledgeable and approachable.  My family, friends and wider community have provided me constant support throughout this whole ordeal, and I feel quite humbled with the amount of generosity and love I have received.

However, from a public stand point I feel like I am part of this ‘war on cancer’, particularly bowel cancer.  I want to tell my story because, if caught early, bowel cancer is often treatable.  Despite it’s prevalence in New Zealand, it doesn’t receive the attention it needs.  Southland and Otago have the highest incidence of bowel cancer in the developed world.  Bowel cancer kills three times more people yearly than the national average road toll.  Its mortality rate is only surpassed, barely, by lung cancer.  Despite my age, the symptoms I experienced were classically textbook.  Not only must the public and primary health care providers become more aware of the early warning symptoms of bowel cancer, but the government must respond with resources for colonoscopies after a referral is made.  A best practice model is a two-week waiting period between a referral and a colonoscopy, but at this point many people with similar symptoms to mine are waiting up to six months for a colonoscopy.  Six months could be the difference between the removal of a polyp or primary tumour and the cancer spreading to other parts of the body. 

I am going to die from a potentially treatable cancer.  I hope my story highlights the symptoms of bowel cancer so other families and communities may avoid the painful journey I am currently undergoing.

Postscript

It is with much sadness that Beat Bowel Cancer Aotearoa wish to advise of the death on Sunday July 10th of our member and friend Claire Wilson aged 30 years.

Although Claire had advanced bowel cancer when she joined our charity in late 2010, she was selflessly committed to raising awareness of bowel cancer in the hope that her story would save others from a similar painful and needless experience.

In the short time Claire had left she worked hard on our behalf to promote bowel cancer awareness. Many will have seen her, with Dr Jared Noel, tell their stories on the 20/20 programme during our recent bowel cancer awareness week. Her story and her bravery at such a difficult personal time has had a powerful and lasting impact on everyone who watched the programme and ensures that her courage and her message will live on.

Even up to the last, Claire's focus was on helping others to beat bowel cancer. She will be hugely missed by all those who had the privilege of knowing her.
Beat Bowel Cancer Aotearoa is committed to carrying on the bowel cancer awareness work that Claire was so passionate about.

Claire's Story on 20/20

Kate

I was 34 years old when I was diagnosed with stage 3 colon cancer. Ironically, I have done everything 'right'. I have eaten well, stayed a healthy weight and exercised regularly! The doctor told me it was bad luck…and there was no simple answer to explain why I had this disease. I had felt abdominal pain for around 6 months before diagnosis.

The first occurrence of pain unfortunately coincided with a bout of food poisoning. The pain was therefore easily explained away as there was a feasible explanation. However, the pain continued off and on over the next 6 months and I was sure I could feel a lump in my tummy. I was put on a course of Buscopan to help with the cramping as there was no other explanation apart from colitis after the food poisoning.

Early in 2008, I went to work one morning with strong abdominal pain and a feeling of dread. I knew in my heart something was very wrong. I left work and went straight to the GP. I was embarrassed to be back in her clinic... this was the 3rd time I was back for abdominal pain with no obvious cause. The GP couldn't find anything obvious, so she sent me for a blood test and advised me to book in for an ultrasound.

At my age, I could have been waiting for a considerable time for this through the public system but luckily I had private health insurance and was able to make an appointment early the next week. The next day, after spending the previous night with severe waves of cramping pain I admitted myself to Auckland City Hospital ED. Even a cocktail of strong anti-inflammatories, pain killers and anti-spasmodics didn't touch the pain and I was convinced I had a burst appendix. After a day in ED, numerous tests and a doctor telling me she felt I had 'anxiety', they sent me home. My blood test came back with mild inflammation.

I had a private ultrasound 3 days later... they found a mass in my transverse colon just to the right of my tummy button. No surprise to me, I had felt a mass there for several months.

Within 2 days I had a colonoscopy and I was in surgery by the end of the week. My surgeon removed the mass in my transverse colon. Even though it was an unusual presentation, and it didn't "look" like cancer, the surgeon suspected it was. I remember that as being by far the worst time. Not knowing whether I had cancer or not, and facing major surgery was extremely tough. The surgery went well and I did not require a stoma. So well in fact that the surgeon was full of hope and told my family it didn't look sinister. Two weeks later after much hopefulness, I had the worst phone call of my life. It was cancer and some lymph nodes were affected. I needed 6 months of chemotherapy.

Unbelievably my first appointment with the oncologist was the turning point in my journey. He gave me hope that there was a good chance things would be OK. He told me that this is a curable cancer and that many people survive. I could never have imagined that I would walk out of that office on a cold winter night with a smile on my face for the first time in weeks. I was going to be OK. It was like I had been given permission to have hope again and THAT is the MOST important part of cancer recovery. Having hope.

 
Mark Owers

I have always endeavoured to look after myself by keeping fit and watching my diet. I have never smoked, mainly because I couldn't get the hang of it and had only drunk alcohol moderately so I had nothing to worry about.

It was back in 2006 and I was feeling incredibly tired. I work in a fairly pressured environment and initially put it down to that. I remember walking into my manager's office one morning around 10am saying I am so tired I can hardly stand. I couldn't even feel my legs.

I went to my GP just up the road from the office and he said "you need a holiday" and I said no it's not that. He did tests and came back with the same thing "you need a holiday." After several more visits to him I was still getting the same answer.

After a busy weekend working I was driving home and found myself on the wrong side of the road but managed to get home somehow. I woke up at 4am still fully clothed lying on my bed. I guess I must have made a bee line to the house and made it to the bed before collapsing as the front door was still wide open. I was exhausted but on automatic pilot it seems.

Thinking back I sometimes did get sharp pains while walking but did nothing about it as they didn't last and also I must have been bleeding when going to the loo but typical bloke I never looked.

Unknowingly I was seriously anaemic at this time. I was now worried and talked to a colleague who suggested contacting a pharmacist on the North Shore who had a list of exceptional doctors. I made the call and was given the number of a GP in Howick. It was a 30 minute drive but I couldn't wait to see him. What a difference, he listened and said this is not normal and sent me for blood tests. The technician at the Medlab said this guy is thorough and that was music to my ears.

The next step was the dreaded colonoscopy which I paid for privately as I needed answers fast. I woke to the specialist saying you have serious bowel cancer with three large and advanced tumours, I can remember thinking I am only 49 years old and bullet proof. I can still see my friend Phillipa's face as I was told the news. Phillipa said what now and I said lets go to the pub which we did.

By the time I got home, in a happier state by that stage, there was already a call from my new GP saying he could imagine how I was feeling and to call him immediately to talk about it. What a great guy. Someone was on my side as I had a fantastic surgeon who rushed the paperwork through somehow and I was in hospital one month later.

I was told a section of my bowel would be removed and I would function normally again. I awoke, and with my hand felt the colostomy bag and I was gutted to say the least. I was a swimmer and had visions of never taking my shirt off in public and swimming again, shallow I know but that's how I felt.

My surgeon visited and said the operation had turned into a major as at the end of the op they found another large and one smaller tumour at the top of the bowel that the colonoscopy technician had missed, not good. The surgeons had to perform some very creative surgery that they hadn't done before but were confident that the colostomy bag could be reversed in a few months. They only tried this option due to my age, fitness and my overall wish not to have a permanent bag. For the first week in hospital I couldn't even look at the bag but finally summoned up the courage to deal with it and I must admit it worked very well overall.

My surgical team called me the royal flush boy as not one of the five advanced tumours had broken through the bowel wall. What a lucky boy I was. They were amazed and said you are obviously meant to be on this planet for something bigger. Three months later the bag was reversed and the fun started, retraining the very short 30cm of large bowel I had left. It took a couple of years and I was woken every hour or so during the night but now as long as I watch what I eat I have a good quality of life.

Because of the severity of the cancer for my age I was sent for genetic testing at Auckland Hospital. The results came back that I carried a mutation of the MSH2 gene and HNPCC. (Hereditary Non-Polyposis Colorectal Cancer) I think if I remember correctly that 85% of males who carry this gene develop colon cancer by the age of 45 and I was 49 so had done well. The rest of my family were also genetically tested including my parents and thankfully none of them carry the rogue gene, it skipped a generation. I am clever and managed to mutate genetically and as I told my Dad I always thought I was an alien.

Life is good and I have a colonoscopy every 6 months as I am an expert at growing cancerous polyps within 6 months and need constant surveillance.

I am one of the very lucky ones who has had another five years of this precious life and you do look at your world and the way you react to things differently after dealing with the big C.

I have had a few knock backs when twice during checkups they have found new cancerous growths and surgeons advised me to embark on even more major surgery but I have decided not to go there. The new tumours have been removed and I am certain I will be around to harass everyone for years to come.

My motto: Laugh at yourself and this crazy world, have heaps of fun, enjoy the simple things in life like family and friends, a beautiful flower or a bird's morning call and I always remind myself there a many many people that have to deal with far more every day than I will ever have to deal with.

Thank you for taking the time to read this and I hope it is of help. Take care.