You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be!
For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. I had no idea what was going to happen. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.
However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter
What is ‘Survivorship’?
The definition differs slightly between national cancer advocacy organisations but it would appear it also means “Living with, through, and beyond cancer“ which is a UK term. According to these definitions, 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’.
Here’s a great quote I found in relation to the term ‘survivor’:
Times are changing
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 people (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. I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million). Almost half of the current survivors are aged 70+. In another 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.
Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment. These are both challenges global health systems need to face with rising cancer prevalence. And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support-type issues and unmet needs, and the resources to deliver them.
So, does that mean I’m a SURVIVOR?
My research indicates this can be a very individual thing. I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. 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.” Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. 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. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving! Perhaps the phrase “I got this” was my subconscious thought in the picture I’ve used below.
Listen to me talk about this kind of feeling early on in my diagnosis period and then what I think now – a 2-minute video and worth a watch. Click here.
You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?
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I’m a survivor! Pancreatic NET stage 4, Grade 2. Diagnosed 11 months ago! In this most year I’ve had 4 surgeries and haven’t felt better in years! I love my life and most days I am living it more fully than before diagnosis. I am motivated to survive in large part for my beautiful children, who are 8 and 3.
Thank you Ronny ! Your posts help me to improve my english 😉 and to understand our “rare disease” with fun and smiles most of the time 😄
What do you think about the term “warrior” instead of “survivor”…? We survive each day, one day after another, but we’re not sure to be the winner at the end, to survive. But one thing is sure : we fight, we are warriors.
Best wishes from France 💜
I have survived oesophageal cancer and breast cancer and what ever else it cares to throw my way
Glad to hear!
You light up our lives Ronnie. I’m a survivor 6 years with liver and bowel resection 6 rounds of PRRT and octreotide Injections aren’t we lucky to have such great medical treatments and emotional support from you and the Unicorn foundation in Australia🦄
Thank you and hope you are doing OK!
I was diagnosed two years ago. Primary in my lung, removed in a lobectomy. METS now being controled with Sandostatin. I work, holiday, run- I have a fantastic quality of life. My personal worries now have moved from dieing to living with a poor quality of life. I wonder how many of us have a compromissed life style, due to pain, medication side effects, etc x
Yes, living with NETs is very possible even with distant metastasis. However, treatment can come with side effects, some long term. Most people need to adjust to a new acceptable and tolerable normal and work to improve that. Intolerable effects will need support and perhaps further treatment. This is a huge area, topical; and some of it is currently an unmet need in this cancer and many other types too.
I definitely consider myself a survivor! As long as I’m alive, still living with my cancer, I’m a survivor.
Good argument for the word Ronny, not sure it is one I would use, but each to their own. For me it is more about just trying getting on with it, but I don’t think there is a single word for that!!