Living with Cancer – if you’re reading this, you’re surviving

 

For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. 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 advocate 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’.

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 words “I got this” was my subconscious thought in the picture I’ve used below?

I got this!

And this picture which always gets a tremendous response every time I post it:

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”.

You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?

It’s scary searching Cancer online

IMG_20160427_192004.jpg-1060x1060
that’s me in the middle

When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It’s not just knowing where to look, it’s also about the interpretation and knowing what is current and what is out of date.  As a novice NET patient, I found out my 5-year survival rate was only 38%.  It looked like a credible site but I now know it was totally out of date!  I’m still here! 

Fast forward 6 years and I now confidently prowl the internet, I know where to look, I know what to ignore, I know what is current and what is out of date.  I understand the disease and am able to put most things into context. Even today with much more positive stuff out there about new treatments and much better prognostic forecasts, I suspect for newly diagnosed patients, it will still be scary.

When I established my blog and then my ‘front end’ supporting Facebook site, I decided to put this experience to good use to help others (including myself!). I like to help people navigate the muddy waters of Neuroendocrine Cancer.  This can bring with it some tough questions so I’m always careful to manage expectations.  Fortunately, I have a number of ‘go to’ sites, people and organisations that I use once I’ve established someone’s requirements.

I’m often reluctant to recommend particular patient forums to anyone as I think many of them can fall into the scary category, particularly those without any form of monitoring or ‘community champions’ who are experienced or trained to handle the issues that can occur online.

Around a year ago, I decided to join the Macmillan Online Community Information site, and was pleased to see it had a blogging app. I found it to be an excellent site and it has a ‘one stop shop’ of supporting tools and information.  It’s very easy to navigate and use.  You can read the content but you need a logon to blog or comment on any discussion (pretty standard).  Their information on many of the issues faced by cancer patients is second to none (Finance, Work, Emotions and many others). I know some NET patients are wary of technical information about NETs online but of all the sites that are designed for supporting multiple cancers, Macmillan is one of the best ones for general NET information. There is also a discussion app (a forum) which I try to monitor and help those who find this site and are struggling to find answers to certain questions. There isn’t really a strong presence in the Neuroendocrine Cancer section but it is a less common cancer. They have a number of ‘Community Champions’ on their forums who are absolutely fantastic and they make you feel comfortable. Moreover, they make you feel like you are not fighting cancer alone.

I’m also a heavy supporter of Macmillan on twitter as some of their campaigns directly benefit Neuroendocrine Cancer. More and more people are now living with Cancer and there has to be more focus on maintenance and support, in particular for the consequences of cancer. Macmillan is at the forefront of these campaigns and they are an organisation that can make a difference.  I have listed some Macmillan twitter accounts to follow below.  If you’re a tweeter, your help with their campaigning would be appreciated. UK patients can also sign up as an e-campaigner – this is an easy task involving half a dozen 10-minute online activities per year – so you too can help make a difference by adding your voice.

In terms of Neuroendocrine Cancer awareness, the Macmillan blog site is now my 6th biggest referral point to my Living with Neuroendocrine Cancer blog and they have also featured several of my posts and used some as guest blogs.  I was therefore both delighted and honoured to have been chosen to feature in their ‘Community Information’ campaign poster which you can see as the header picture in this blog. During the photo shoot, I also got to meet the fantastic staff from Macmillan Cancer Information and Brand Awareness departments.

Finally, please note that Macmillan have advertising space booked and you may see my face as you’re driving through the UK streets or stood at a bus stop. Now that is scary!

Thanks for listening

Ronny Allan – Macmillan Cancer Voice

for those on twitter, please consider following and supporting these twitter accounts:

Macmillan Consequences of Cancer

Macmillan Recovery Package

Macmillan Cancer Information

Macmillan Campaigns

Macmillan Cancer (main account)

 

I’m also active on Facebook.  Like my page for even more news.

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My Diagnosis and Treatment History

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For those on twitter – please consider retweeting the post below:

https://twitter.com/MacConsequences/status/736905556582141952?s=09