For the first few years after my diagnosis, I relented using the word ‘survivor’ in relation to my incurable cancer. It just doesn’t seem to sit right despite the fact that I’m a ‘glass half full’ kind of guy. I always thought it only really applied to those who were in full remission.
HOWEVER…….. I was studying the term ‘Survivorship’ and found that there might be something in it for those living with incurable and long term cancer. This piece of research has totally changed my thinking.
What is ‘Survivorship’?
The definition differs slightly between national cancer advocate organisations but it would appear it does mean what I thought above BUT is also means “Living with, through, and beyond cancer“. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease. It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.
I researched several national cancer survivorship initiatives and found many similarities at the international level. For example, I blogged about the great programmes in UK via Macmillan Cancer Support, in particularly the Recovery Package (specific support for each cancer patient after diagnosis) and managing the Consequences of Cancer – something very apt for NET Cancer patients – you can read more in my blog ‘Living with Neuroendocrine Cancer – it takes guts’. There are similar initiatives to be found including in the USA where you can see ‘survivorship’ programmes led by the American Cancer Society and the American Society of Clinical Oncologists. I’m sure I’d find many others in many countries if I kept searching.
Here’s a fact – more people are now surviving cancer.
I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago. For example, in the UK, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause will have doubled over the past 20 years. More people are surviving cancer. I’m seeing similar reports from USA too. For example, the US National Cancer Institute (NCI) is predicting:
‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).
There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it. Full article here.
So does that mean I’m a ‘Survivor’?
My research indicates this is a very individual thing. One very simple meaning I found is “someone who has a history of cancer“. However, I guess ‘survivor’ does not appeal to all people who simply have a history of cancer; and most likely for different reasons. For instance, someone might simply identify more with being “a person who has had cancer”. However, for those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.” I get that and it resonates with my reluctance to use the ‘S’ word to date. Moreover, I appear to have subconsciously selected my blog name as Living with Neuroendocrine Cancer rather than using the ‘S’ word. That said, thinking this topic through has made me compare where I was at diagnosis and where I am now. Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition. Perhaps “I got this” was my subconscious thought in the picture I’ve used to head up this blog?
Here’s a great quote I found in relation to the term ‘survivor’:
“You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness”.
Are you a survivor? I know I am.
Thanks for reading