Emily's bowel cancer story (diagnosed age 38, VIC)

In October 2018, at the age of 38 I was diagnosed with stage 4 bowel cancer.  The week before, I presented to a GP clinic (not my normal clinic) with some abdominal cramping and nausea.

The doctor listening to my abdomen said it sounded agitated and then sent me on my way with some medication for the nausea and Buscopan for the cramping.

During  that week it seemed to settle down a little and I attended a work conference in Sydney.  That following weekend the symptoms were back and I felt worse, unable to keep anything down including water. My husband took me to the emergency department. 

They suspected that it was appendicitis and since we lived quite close to the hospital, they considered sending me home to see if I was going to get any worse. They then decided they would keep me there and run some tests.  This is when a CT scan revealed a mass causing a blockage.

Things then started to move very quickly. I had a biopsy and more tests, which showed that there was a 7cm cancerous tumour almost blocking my bowel.  I was rushed into surgery where they removed the tumour, 35cms of my bowel and several lymph nodes which also contained cancer.

I am grateful to my surgeon who skilfully repaired my bowel intact without the need for a stoma. 

This all happened within days. My entire hospital stay was 11 days. Upon discharge I was referred to an oncologist who requested a PET scan that showed the cancer had spread to my lymph nodes.

Following my surgery (right hemicolectomy) and PET scan I found out I needed chemotherapy, 12 cycles over 6 months.  I had relatively few side effects from the treatment apart from fatigue. 

Unfortunately, after 7 cycles of chemotherapy a progress scan showed that I was no longer responding to the treatment and in fact there were two more new lymph node sites now showing a presence of cancer. I am now undergoing a second line treatment regime that involves two IV chemotherapy drugs and two oral tablets that target the mutation in my tumours.

Unfortunately, these tablets are not available for treatment for bowel cancer on the PBS.

Although I had relatively few side effects from my first lot of treatment, this second regime has really knocked me around and for the first few cycles I was so unwell that I was hospitalised. This has calmed down now with some additional medication and a small dose reduction in one of the IV chemo drugs.  I currently have no end date to this treatment regime but have had a progress scan that shows I am responding.  

Having a cancer diagnosis really puts things into perspective and strangely has bought me a sense of calm. It has taught me to slow down, something I wouldn’t have thought was possible before my diagnosis.  I was a person always on the go.  I value my loved ones even more than I thought I did and am truly grateful for the support that I have. 

A cancer diagnosis impacts your loved ones just as much as it can you but in different ways. My wonderful husband has become a carer as well as our chef just to name a few things, whilst still working full time and studying. I am in awe of him. 

One of the hardest things that was quite unexpected is the transition from a person who is always on the go to someone who has no choice but to slow down. 

I was incredibly social prior to my diagnosis with a big group of friends and finding the time to maintain all those relationships has been a challenge when my energy and stamina are so depleted.

I was also incredibly active and most of my hobbies were based around being active. Not being able to complete the same kind of activities has taken some getting used to. 

Due to some complications and hospital stays I have lost lots of strength and look forward to getting that back soon.

My advice to anyone is do not leave any tummy, or toilet symptoms unchecked. 

Bowel cancer is not as commonly spoken about as other cancers but it needs to be, as we know it is impacting more and more young people and more and more women so we need to speak about it.    

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