The official report from my gastroenterologist:
‘A fungating partially obstructing large mass was found in the distal sigmoid colon (approx. 20cm). The mass was partially circumferential (involving two-thirds of the lumen circumference). No bleeding was present. This was biopsied with a cold forceps for histology. Malignant partially obstructing tumour in the distal sigmoid colon. Removal was not done.’
I was the healthiest I've ever been leading up to my diagnosis. I was doing reformer Pilates 4-5 times per week. I was far more conscience of my diet between 2017/2018. I had no symptoms at all up until September 2018.
On September 24th, 2018, I noticed a bit of redness in my stool for the whole week. On October 1st, I woke up and noticed I was passing blood only.
As that particular day was a public holiday in Adelaide, I opted to go to the public medical centre. After waiting at least 1.5 hours, I saw a random doctor. I wasn't thrilled with his demeanour in general, he was a bit judgmental. He had me lay down and he assessed my stomach then asked if I'd be okay with a rectal exam which I agreed to. He was surprised that there was no blood on his glove and recommended I have a blood test the following day. I obliged, waited at least another 1.5 hours to see the pathologist on the Tuesday.
I returned on Thursday the 4th and saw a different doctor (again after a 2 hour wait). He assessed my stomach again and ask if I have private health. After I said yes, he gave me a referral to a gastroenterologist. (I later found out from my colorectal surgeon that 50 percent of GPs would NOT have recommended I have a colonoscopy. This doctor literally saved my life.)
Fortunately, there was an appointment the next day! (I have later discovered the wait time publicly for a non-emergency colonoscopy is 182 days!) The gastroenterologist didn't seem very concerned at all. He recommended we do an endoscopy to test for celiacs disease as well as a colonoscopy.
He suggested perhaps I might have polyps, internal hemorrhoids or a fischer. He also recommended that I have an iron infusion as my blood test results showed I was low in iron. We booked my colonoscopy for the following Thursday the 11th of October. I woke up from the colonoscopy to the news above. After my iron infusion I was then sent downstairs to have CT scan in a wheelchair (that's when I really started crying). The women performing my CT scan was very shocked to learn about my diagnosis (which definitely continued with basically every healthcare professional I came into contact with there on after). I then was sent straight to meet my colorectal surgeon.
My surgeon has been my source of confidence that I will be well again. He told me every fact that was necessary for me to know at that point in time.
-He cleared my organs based on my CT scan
-He explained my lymph nodes were 70 percent likely to be affected (due to my young age, cancer is more likely to spread)
- He said I was 95% likely to NOT have an ileostomy bag (which I did end up having)
-He recommended IVF, as it was highly that I would be undergoing chemotherapy
- He explained how he would do his best to perform my surgery via laparoscopy however as it was an emergency cancer removal surgery, there is a chance I'd be cut down the middle (fortunately I wasn't)
He then asked if I wasn't to go home and discuss with my parents etc. before booking my surgery. My husband and I decided to book the surgery there and then! Fortunately, 13th October 2018 was the next available date.
I had an ultra-low resection of my bowel, 30cm of my colon was removed as well as 25 lymph nodes (only 3 ended up being affected). I had a loop ileostomy performed that as well will be reversed post chemo). Prior to chemo I underwent one cycle of IVF and was extremely successful with 9 embryos created and frozen. I also had an infuser port installed (highly recommend for anyone going through chemotherapy). I am currently undergoing 12 for cycles of ‘FOLFOX6 modified (fluorouracil, leucovorin, oxaliplatin)’. I have just finished cycle 6. Chemotherapy is delivered every second Wednesday.
The main psychological issues I faced was the 8 weeks of recovery while learning to care of my ileostomy. Coping with the ileostomy was a huge mental barrier that made recovery from surgery very frustrating. It took me about 3 weeks to properly adjust to the bag. Once chemo commenced, the ileostomy began to be affected, growing in size as well as becoming a bit bloody. Now being at cycle 6 I know how to manage it a lot easier during chemo.
I still feel in shock to be honest. My chemo days get me feeling very average for about 4 to 5 days, then I have 9-10 days of feeling perfectly normally. I currently suffer from neuropathy as well as heavy fatigue. I've kept all my hair and suffer ever so slightly of nausea. Aside from that chemotherapy has been rather kind to me.
Fortunately, we own our own business and I've been lucky enough to not have to work since my diagnosis. This combined with an extremely supportive husband, parents, in laws as well as loving friends is what has got me through. I've been attending meditation classes as well as using the Headspace app to keep my mind peaceful.
I will mention again the infuser port has been a huge help to the 46 hours where I actually have to carry around the Baxter Bottle of chemo.
I have never in my life been as happy as I am right now. This diagnosis has led my husband and I to realise that everything we need in our lives to make us happy, we already have. I believe meditation has played a very large role in keeping my mental state healthy, calm and peaceful.
Strangely people in my life ended up surprising me in positive ways as well as negatively. I've had friends whom I thought I was distant with, come back into my life in such a positive way. Helping me with a variety of things to help me feel more comfortable.
The day I came home from Hospital after my surgery was not the joyous day I anticipated (it was coincidently our 1-year wedding anniversary). I just expected to feel comfortable and for everything to feel normal again. But nothing was the same, everything was different and it's when I guess everything sunk in. I was extremely sore from surgery for literally the entire 8 weeks. I had extreme pain in my bottom and my stomach pain was very sore as I weaned myself off of my pain medication.
Don't be concerned about having an ileostomy/colostomy bag. Honestly after the 3 weeks I was fully adjusted. I truly believe that if I had to have this for the rest of my life I would absolutely cope. It's nothing to be ashamed of, I literally make jokes daily now.Being public about my diagnosis has led to me meet some truly inspirational women and men. A friend with an inoperable brain tumour said to me:
"People have this perception
that cancer leads to death.
I believe cancer leads to life.
It can make people realise
they are not invincible, and to
live the best life they can."
[- MATT "WILLY" WILLIAMS -.]
Share your Kick Ass Story
In celebration of International Women’s Day (8 March) each year, Bowel Cancer Australia raises awareness of bowel cancer in women and shares empowering stories from Aussie women who are kicking bowel cancer’s ass.
Are you a kick ass woman living with or beyond bowel cancer, or do you have a female family member or friend that is?
We’re seeking female volunteers of all ages to share their experiences to help raise awareness of bowel cancer in women as part of our annual Kick Ass: Bowel Cancer In Women initiative in March.
Share your own story and help us kick bowel cancer’s ass.