Things That Make Me Glad To Be Alive #2 - Beautiful Iceland

Photos from my September visit - sadly there too early to see the Northern Lights. I'm not a travel bore but I really, really recommend visiting this wonderful country. And if you have your wits about you, it's not too expensive. Plus the food is of a very high standard. All photos are unfiltered.

I Wish This Was All My Medication Entailed...

Things That Make Me Glad To Be Alive #1

I don't wish for my blog to be all doom and gloom. So I'm going to periodically include photos, video clips and other miscellany that make me realise I'm glad to be alive.

First up, this undoctored photo of a beautiful sky that I took from my apartment balcony one evening last week.

Terminal or chronic?

Can metastatic breast cancer be described as a chronic illness? I've recently discovered that this is a contentious topic. I've also discovered that I have strong feelings on the subject. I didn't realise until very recently that I do, but I do.

Around eight years before I was diagnosed with de novo metastatic breast cancer, I started to experience moderately severe stomach pains. Every time I tried to eat or drink, I would double over in agony and need to vomit up what I had just ingested. I went to the doctor. She prescribed indigestion medication that did nothing. But I duly waited the customary two weeks. When there was no improvement in that time, I returned to her. As my bloodwork showed that there was inflammation somewhere in my body, she ordered an CT scan of my stomach and bowels which showed inflammation in the colon. I was referred for an MRI, which is a long wait where I am from. In the interim, I developed an abscess which, left unchecked, could have caused me to develop septacaemia. I was rushed to the emergency department of my local hospital in a very bad state. I had a very high temperature and was close to passing out from the pain caused by the abscess. This resulted in my hospitalisation, where after an agonising stay and a smorgasbord of tests and biopsies, I was diagnosed with Crohn's disease at the age of 23. The eight months post-diagnosis were challenging, involving surgery, protracted daily wound-dressing and even more tests. I had to leave my final year of university in order to receive the treatment. But I never, ever felt that I would not survive. The brush with septicaemia was the closest I came to death and I didn't even develop it. With the right management, I knew that I could expect a normal or nearly-normal life expectancy. Some people do sadly die from Crohn's disease but the mortality rate for the disease is relatively low. It used to have a more bleak prognosis but in the last 50 years or so that has happily changed.

My experience of suffering from a chronic illness is one of the reasons I don't think of metastatic breast cancer in the same way. Its mortality rate is virtually 100%. The reason it's not quite 100% is that sometimes a sufferer will die of something else before the cancer gets them. The people who make it to ten years are outliers, never mind people who live past the ten year mark. Most people will still succumb within five years and sadly some of those in the first year or two post-diagnosis. If a disease is truly to be considered chronic, the people who pass away from it should be the outliers. Chronic illnesses can of course come with attendant chronic pain and I would never downplay that. It's a mental trial in itself. But there is a level of predictability to chronic illness that you simply don't get with metastatic cancer.

I know you might ask “What's the problem with metastatic disease being considered a chronic illness if it gives people comfort?.” There are a number of problems with it, as I see it. The general public already has a poor understanding of what stage 4 breast cancer entails. It doesn't help that there are too many names for it already; secondary breast cancer, metastatic breast cancer, stage 4 breast cancer, terminal breast cancer. And to confuse matters, sometimes these names are ran together redundantly, especially in the media; stage 4 metastatic breast cancer, secondary stage 4 breast cancer. You get the idea. Are we going to add another name to the mix? That fills me with a cold dread. And I think that calling metastatic breast cancer a chronic disease feeds into the misconceptions that so many people hold about the disease. It's widely thought amongst the general public that breast cancer is now a curable illness. Diverting some of the monies raised by charities towards research into metastatic disease is still a herculean task. If the notion that it is a chronic disease enters the public consciousness, won't that exacerbate the problem? “Why would I support research into chronic breast cancer? People don't die from chronic diseases!”.

There is a more upsetting thought - to me at least - to consider in relation to all this. A lady I know through an online support group astutely pointed out to me that if it was to become more common to refer to metastatic breast cancer as a chronic disease, that may compound the anguish of sufferers who succumb quickly to the disease - “Did I not fight hard enough?”, “If it's chronic, why am I now dying, only two years after diagnosis?”. Many sufferers of stage 4 breast cancer are already sensitive to the language surrounding cancer, that implies that you're one of life's losers if you die from it. I think that referring to it as a chronic disease further marginalises those who won't reach the five year mark or even the two year mark. I think for it to be considered a chronic disease, treatments would need to exist that work for everyone within a cancer subtype and those treatments should give sufferers a normal or nearly-normal life expectancy. For it to be considered a chronic disease, people surviving more than 10 years should be the norm, not the outliers. In fact, 10 years would be on the low side of survival statistics for most chronic ailments, I should think. Like with Crohn's, people dying from the disease should be the outliers. I hope this happens in the future. But to get there, we need to make sure people don't lose sight of the gravity of the disease. Calling it chronic now is a feelgood measure that may prevent achievement of the goal of seeing this horrible disease become something you can die with, not of. That should be the criterion to aim for and we are nowhere close to the day when that is a reality. By attempting to gloss over the realities of metastatic breast cancer, we could be hobbling metastatic research goals whilst making sufferers feel worse about themselves in the process. It's an own goal.