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My Bowel Cancer Journey: From Diagnosis to Treatment and Beyond

In Australia, Bowel Cancer is the second deadliest cancer. There are approximately 15,206 new cases of bowel cancer are diagnosed in Australia each year and 10% of that figure are young-onset bowel cancer cases. 99% of Bowel Cancer cases can be treated successfully if they are caught early. Unfortunately, fewer than 50% of cases are detected early which is one of the reasons why I’m bringing my experience to your attention.

Bowel Cancer can strike anyone regardless of age, gender and race. Luckily I caught mine in time and underwent surgery to remove the tumour, and I now face six months of chemotherapy to eradicate any remaining traces of this horrible disease. This blog post shares my personal experience as someone who has fought bowel cancer from diagnosis to treatment.

My Bowel Cancer Journey

The Colonoscopy

My reason for having a colonoscopy had nothing to do with my bowel. My doctor sent me for a colonoscopy because of my Kidneys. I went to my GP complaining of extreme fatigue, I thought I had iron deficiency, but the results showed I had reduced kidney function, so my GP referred me to a Nephrologist (kidney doctor). Because I had mild anemia, the Nephrologist sent me for a Colonoscopy to check all the boxes. The goal was to find the cause of my reduced kidney function.

Thank bloody goodness for this referral because the colonoscopy was where the Gastroenterologist found the tumour and two polyps. I will never forget what the room looked like when the doctor told me I had a tumor (photo below). I felt blank, empty, like I’d lost touch with reality. The doctor sent me for a CT scan to check whether or not the cancer had spread to other organs. The feeling of the dye running through my veins was the beginning of my reality with cancer, and thankfully, it hadn’t spread. I remember being given an image of my tumour; I looked at it once and couldn’t look at it again. My Gastroenterologist referred me to a surgeon who would perform a right hemicolectomy within two weeks. This was a blessing, as they could immediately get me in for surgery without any unnecessary waiting time.

found out i have bowel cancer
The doctor just told me I had a tumour in my bowel after my colonoscopy.

The Surgery – Right Hemicolectomy

A right hemicolectomy is a major surgery, and in my case, the surgeon removed a portion of my large intestine, a part of my small intestine and my appendix.

My surgeon was confident that the cancer had been caught early; he thought it was unlikely I’d need chemo but said he’d get a second opinion just in case. I was in the hospital for five days. I had all of my books and notepads packed, expecting I’d be keen to write or read. I didn’t pick up one book; instead, I lay uncomfortable on the bed. I could hardly move or turn. The day after surgery, the physio tried to get me up walking; it was one of the hardest things I’ve ever done. The pain was so awful I felt like vomiting. I tried the next day again with success. Each day I improved in a big way.

bowel cancer
Not long out of surgery
post bowel cancer surgery walk

Post Surgery Recovery

Whilst I was recovering at home, it was a battle between my mind and body. My mind felt great and wanted to do everything, but my body wasn’t ready. I drove to Bunnings to buy plants when the doctor told me I could drive again. I attempted to manoeuvre one of the big trolleys, which was the biggest mistake I could have made. My abdominal muscles were nowhere ready for it. It put me back a week. You would have thought that after that I’d learnt my lesson?

The following weekend a big airshow was happening over our house. When my kids yelled out to say the planes had arrived, I was sleeping. I opened my eyes, jumped out of bed and ran to the back deck. My mind thought I could do it but forgot my body couldn’t, and I had a massive fall. I was badly bruised in several places and injured my shoulder and elbow enough to go to the physio. That was what made me take a massive step back and I sent a reminder to myself to lower my expectations. I was confident that I’d be back to normal in no time. I was optimistic that I’d go to my post-op appointment and get a plan to have regular checkups. I’ve found that mediation, where I sit and just be, has helped me immensely.

The Pathology Results

I went to see the surgeon for my post-op appointment, and when he told me what they’d found, I remember squeezing my husband’s hand so hard while we sat in the doctor’s office. The cancer was more serious than he had first anticipated; it had made its way into my bowel wall. Of course, I was relieved it hadn’t made it to my lymph nodes, but there was a chance little bits of the cancer were still there. That’s why the surgeon referred me to an oncologist to discuss ‘mop up’ chemotherapy. I kept reminding myself that it was good that it was caught early. I knew that I was in the right hands because my surgeon immediately referred me to the oncologist, and a meeting was arranged for the following day.

Chemotherapy

The ball was thrown into my court regarding whether I go ahead with chemotherapy. The oncologist said I was in somewhat of a grey area given a number of factors regarding my cancer, age, risk, and the fact that I have Lynch Syndrome, a genetic syndrome that increases my chance of getting certain cancers but apparently, it has a lower risk of the cancer returning. I have been referred to a Genetic Doctor to look into it further, just another doctor to add to my list!

There was no way I was taking even a tiny risk, so I decided to go ahead with chemo. Again, in super-fast fashion, I was back in hospital in three days to have my portacath inserted in my right shoulder/chest area. They use this to connect the chemotherapy. My first visit will be on the 31/5/2022 for Folfox6 modified.

portacath
My portacath has been inserted. It’s a port the size of a ten cent piece that sits underneath my skin and the catheter attached goes down into one of my main veins.

Chemo is making me nervous

The thing that worries me the most at the moment is not about cancer coming back but having to go through 6 months of fortnightly chemo. I’ve learned that everyone’s response to chemo is so different. I have heard of some women, of similar age to me, who have received the same chemotherapy drugs as me, yet they handled it with difficulty and lost their hair. On the other hand, there are women my age and under similar circumstances who have been fine.

Every two weeks, I will rock up to the cancer clinic and have 4-5 hours of chemotherapy. Once that’s done, an infusion bottle is connected to my port which I’ll wear home in a fancy carry bag for two days and return to have it disconnected. I’m not looking forward to trying to sleep with that thing in me!

I’m trying to decide if I’m going to get my hair cut to my shoulders because apparently, chemo affects your hair follicles and the heavier your hair is, the easier it is to fall out. Or, I could wait to see what happens. It’s all the unknown for me at this stage, like deciding how to manage my business. At this point, I’m not going to make any big decisions based on the unknown. If I’m too sick to work, I’ll make that decision there and then.

visiting the chemo unit for bowel cancer treatment
Visiting the cancer clinic where I’ll be having my fortnightly chemo

The next six months & the realities of Covid-19

I’ve never been overly concerned about Covid, colds or flu until now. I have a mountain of papers to read on chemotherapy, one of them on chemotherapy safety. I am now one of those immunocompromised people who are at tremendous risk. I can’t even cut myself shaving for fear of infection. Based on the news and skyrocketing covid cases, I think I will have to lock myself up like a hermit or put myself in a bubble. I will be amping up germ control 100 notches in our household.

The Support

It’s incredible the things you learn during tough times; your eyes are opened wide. I’ve had people I hardly even know reach out to me, offering support and love. Yet, there are those I haven’t heard from. It makes it a lot easier for me to filter who matters. But on the other side of things, I think partners can easily be forgotten during times like these.  My husband has been incredibly supportive throughout this entire journey, and he has not left my side for a moment. I know how hard it’s been for him too. Support makes a world of difference in situations like these.

I’ve always been very open with my bipolar journey, and now it’s no different with my cancer journey. People have commented on how strong I’ve been through this journey, and while I can say yes, I have been, I also have days where I’ve struggled and I know I’m going to have plenty more of them. But that’s ok.  I’ve found that fronting up as ‘strong’ can also be very exhausting. What I do know is that I’m grateful for the mindset work I’ve practised over the years. It truly does make a difference.

Why am I sharing my bowel cancer story? I’m an open book. I want blog to remind others that cancer does not discriminate. I am a young woman who doesn’t smoke or drink alcohol, I exercise and have a decent diet, yet here I am. I was lucky they caught it early. Don’t think it can’t happen to you. This is a reminder (and encouragement)to get a checkup. It’s also a place for me to be that relatable voice for people going through a similar challenge.

Stay posted for updates, and PLEASE do not hesitate to reach out. x

Eva Lewis
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