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Ronny was diagnosed with Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, iron deficiency anaemia and facial flushing (Carcinoid Syndrome).
I don't normally use 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 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.
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 and this should be reflected in other countries. The US National Cancer Institute (NCI) is predicting a 'Silver Tsunami' of Cancer Survivors in the next quarter century (read 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?
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I hope the big C is not causing too many problems yet.
Looking at your article I think that, what ever you call it, it does not alter the fact we have it. I prefer not to over analyze it too much and just get on with my everyday living.
I to am living with/ surviving an incurable cancer, as are many of us.
I am beginning to question the statistics and the view I am more likely to die of something else and not my cancer.
Might not the something else be caused by the effect the cancer or the treatment has had on our bodies long term eg. lowered immune systems. Unless of course I meet the perverbial bus!
Or the more reason to enjoy each day as it comes.
I found your defintion of 'survivor' very interesting. I too have been battling with (ovarian) cancer for 5 years and only had 6 months free from chemo or surgery. I am once again on the chemo bandwagon but was only originally given 50% chance of surviing 5 years so I guess I too am a survivor.
Life is hard as you cannot plan ahead very far but I make the most of the time I feel well to travel, swim, walk and get out and about. Cancer certainly focuses your life and you can either sink or swim.
We survivors are a hardy lot and should feel proud of our achievements on this journey.
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