OPINION: Cancer is frightful. When I was first diagnosed I took a very pragmatic approach and was focused on dealing with it.
Today I had to tell someone I had cancer. The usual look was there, the eyes darting straight to my breasts then those flashing looks of at first, confusion then of utter pity when I told them it’s not breast cancer, it's pancreatic cancer.
This is why I try not to tell people I have cancer, because from that moment forward you are forever treated differently. Which when you look at my campaign is opposite of what I do.
Six years ago in September, while I was at work, I got the call (within hours of my MRI) to say that I had a mass on my pancreas.
'My pancreas...What the hell is my pancreas? Well, if there is a problem, let's just take it out,' I thought. If only life was that simple.
My husband was the only one I told, as far as I was concerned, no one else needed to know because I would sort it out and we would just get back to living life.
The speed from the first visit with a specialist to sending me off for an endoscopy should have raised warning flags. But why would it, I had nothing to compare it too.
Perhaps I should also have seen the warning when the endoscopy was booked for Hamilton, as the surgeon there specialised in a system that would give the least amount of disruption to the “mass”. Meaning if it was done through the side of the stomach, there was a chance that (if it was cancer) the cells might escape to other areas of my body. But really none of this registered, until I got the result back and it was cancer.
BUT it was operable.
It was at this stage that I made the conscious decision, that I had to trust someone and that would be my medical team. I would not do any research on Dr Google.
The next six months were a rush of medical procedures, within a couple of weeks I was admitted to hospital to have Marvin the Mass removed. I didn’t think about the dangers of the operation, or even what life would be like after the operation. I just wanted him gone.
Sometimes you're lucky, sometimes you’re not. This time I wasn’t. When they opened me up they found that Marvin the Mass has encircled enough of one of my main arteries that they could not remove it. So they closed me up – but not after taking out a few unnecessary things like my spleen.
I don’t remember too much of this time, partly from the drugs from the operation and partly because all I really wanted was it to go away. But this is when my superhero arrived on the scene (although I didn’t see his superpowers at this early stage).
Because they were unable to remove Marvin, they sent me off to an oncologist (this is where I certainly got lucky) for chemotherapy to see if they could shrink him.
My introduction to this new world of chemo began with my new chemo nurse handing me a will package and told that I needed to go home and put my affairs in order. I am sure she meant well, but my reply was, '@#$#!@#!@##!'
They started me off on 5FOLFIRINOX, or more appropriately named 5FU. Supposedly the toughest of all the chemo’s that they use to treat pancreatic cancer. I was determined through all this to carry on life as normally as I could. This meant even working through this time. I was lucky again as even though this was an extremely tough chemo regime, I believe, my body handled it well and as I was able to hide from the world on the days, I felt bad, and the good days still far outnumbered the bad.
At this stage, the only people I had told were my immediate family and a few very close girlfriends. But word got out. I really don’t know how I would have got through this stage without my friends. I called myself the forgotten patient as I felt that there was no one else out there like me. All the messages in the media for cancer support for breast cancer, prostate cancer, bowel cancer but where was the support for pancreatic cancer. There was none. The feeling of abandonment and loneliness was weird and not feelings I enjoyed.
I couldn’t turn to my family as they were dealing with this cancer journey themselves. I felt I had to be the strong one for them. They had their issues, and they had to come first and be supported. If I showed what I really was feeling, then I was scared that we would all just crumble into a mess on the ground. Looking a lot like where someone had upended a pottle of slime onto the ground. We would spread out and never be able to be picked up completely and put back together. I had to stay strong. Kia Kaha. Such a nice-sounding phrase for such a horrific situation.
The chemo worked and I was a candidate to be operated on again. I remember the night before the operation, after the family had left, looking at the butt-ugly hospital curtains and thinking, 'I do not want these brown curtains to be one of my last memories on this planet'. There was a risk I might not have come through the operation. I have to admit that it was with a small amount of satisfaction that I felt when coming too after the seven and half hour operation and being told that they got the damn thing, 'Goodbye Marvin, I can beat you'. The relief was immense. When they told me that I had to undergo another three months of chemo to mop up any cells that may have escaped during the operation, I think nearly jumped for joy. The plan is working.
But then the journey took another path and began all over again. The operation to remove Marvin was successful, but the side effects for life, was something I never expected. I became a diabetic. Seriously who would have thought that I needed a pancreas. Well every diabetic will tell you, you do. The pancreas is the organ that produces insulin for the body. Now that I didn’t have one, I was diabetic. But I was in a grey area. Not a type 1 diabetic where you get all the care and funding, or even the adult-onset Type 2, where diet alongside insulin if required will control it.
Really, what is it in this medical system, why it is that pancreatic cancer puts you in such a nowhere zone (the void) - without support. I call myself Type 3c diabetic (medically induced). There is no support for this type. Try to get yourself included in with the type 1’s and you're very reluctantly accepted.
So again, I fell into calling myself the forgotten patient.
But Marvin hadn’t forgotten me, he had just gone into hiding and he came back bringing his family. They were now lodged in my lungs. The fight began again with the arrival of metastases, I went through all the initial horror stages of discovering I had cancer again, the horror that I was facing a death sentence again. The difference this time is that I know that cancer will win, it's just a matter of time. But damn it, I will make it work for my body and I will make the most of my time as I can.
I have just spent five weeks in Canada and the USA, and apart from spending a wonderful time with family and friends, one of the warmest feelings I had on the trip was that I didn’t have to explain myself. I wasn’t treated any differently from anyone else. Life is great…. Take that, Marvin!
Nyree Smith was diagnosed with pancreatic cancer in 2017.
Find details about Nyree's pancreatic cancer fundraiser here.
