Nicola’s story

“My name is Nicola and I was diagnosed with stage 4 metastatic bowel cancer last year, at 43. I live in Hawkes Bay with my husband, three kids (17, 14 and 7) and two cats.

Since I was 18 or so I never had regular bowel motions. I would get haemorrhoids and anal fissures, sometimes constipation, or at other times diarrhoea! After my third child, because I consistently had low iron and B12, I was tested for Coeliac Disease. This was confirmed when I was 37.

In May last year I had pain in my lower right abdomen. It started on a Wednesday, and slowly increased in pain. I went to the Urgent Care on Thurs night and was told it was a pulled muscle. The pain continued to increase to the point where I could not sleep. On Sunday morning I went back and was sent to ED as they thought I might have appendicitis. I was sent for a CT, and after having this, had my first bowel motion since Wednesday. The pain went away! The doctor arrived about lunch time to tell me it was not appendicitis, but that they had found lumps in my colon and stomach.

As you can imagine, I cried and so did my husband. I waited in ED until 7pm that night, waiting for the surgeon on call to make a decision. They decided to do a biopsy through a colonoscopy in the morning, so I went home and hugged my kids (then 16, 13 and 6).

The next morning I had another CT to check my lungs (which were clear) then a colonoscopy where they found the tumour in my sigmoid colon. I went home after this to wait for the results.

The next week we went in to meet my oncologist, Dr Paula Barlow, who is possibly the nicest, smilingest person I have ever met. Unfortunately, she had to deliver the news that I had stage 4 metastatic bowel cancer. I did not ask her how long I left, instead I told her I would be the exception to the rule and prove her wrong.

My first lot of chemo took place the week after, they got me in really quickly! I had 2 hours of IVs for the lumps in my liver and lymph nodes, followed by 14 days of tablets for the bowel, then a week off. The first few rounds were horrendous. I got sick, barely ate, felt terrible. The first few days while I had the mix of IVs and the tablets made me feel like I was watching life through a pane of glass, that I wasn’t quite part of the world. I also developed incredibly sore soles of my feet. Luckily, my hair did not fall out en masse, but it did thin somewhat. I have thick hair anyway so it wasn’t particularly noticeable. Once I started to get used to the routine, it was easier to deal with. I stopped throwing up and began eating more.

Full credit to my husband who cleaned the toilet every time I was sick, and who would lie towels on the bathroom floor and prep the taps when I couldn’t touch cold things without going numb. My mother, who I am so lucky to have, was over every morning to hang out the washing and get the kids to school. My big two stepped up and helped with their little sister. We never told them the extent of my diagnosis. My brother-in-law died a couple of years ago of sarcoma, and they saw that happen. I simply told them I had cancer, that I had to have treatment, and that I wasn’t going anywhere anytime soon. I did not, and do not, think they needed that burden of knowledge, that they couldn’t do anything about anyway.

My first CT after 3 months showed shrinkage in all sites, and my CEA levels had dropped remarkably. The same happened in my next CT in November. I had 7 rounds of chemo, then we decided to have a chemo holiday over the holidays. I went back to work for the last few weeks of school (I am a high school teacher) and enjoyed being normal! My CT in February showed that things were still shrinking and my numbers were still dropping.
As a family, we took a trip to Samoa, where my husband was born, in April and had an amazing time. The next CT was May and things were still looking good. My next CT is August, so I hope it stays the same!

I am lucky that I don’t have any pain or issues. I make sure I have a BM everyday, and take a laxative to ensure it. I eat a low fibre diet so as not to irritate the tumour. Surgery has been mentioned, but does not seem to be needful at this point, as everything is moving as it should through my system. If things change, no doubt that will change. I have been back at work full time this year, enjoying being normal and not worrying over life and death issues.

To look at me, you would not think I had anything wrong. I do not google, I do not research. I simply listen to what the doctor says and do what I am told and I don’t question it. I am burying my head in the sand I guess, but I know that for me to cope, I don’t need to know everything. I do not want to live my life with a ticking clock over my head. I still have issues with the bottoms of my feet; the sensation has changed completely, but I still have feeling there. It just feels a bit like pins and needles all of the time. Mentally I have struggled at times, especially in the beginning, and I find that getting sick throws me into a mess.

I don’t think there is a ‘right’ way to deal with stuff like this. I compartmentalise, and focus on my family. My eldest is 18 next month and off to university next year. My middle child is 15 at the end of the year and will start NCEA next year. My littlest is 7, and I am determined to be here for her and my precious older ones for as long as I can. I am hopeful that these new drugs promised by National may help me in the future. All I can do is try and stay positive and focus on the small wins. I get ‘scanxiety’ coming up to every test and I cry each time I sit in the waiting room and wait for the results. But that is just part of my life at the moment. I am teaching, I have started a graduate diploma and I am so, so thankful that I can do those things.

I cannot fault the medical staff who look after me, and I have been moved through the system quickly. Save for having a colonoscopy 10 years ago, there was no way to know this was happening inside me. My kids will have their first ones at 33 and my immediate family have all been tested. A couple had polyps, but all are ok. It was always odd sitting in the chemo ward, being the youngest person, with the most hair, but everyone was always so nice and welcoming.

I will just keep hugging my kids and enjoying being normal while I can. And deal with what happens next when it happens.”