I read an interesting article in the BBC entitled “Why people keep quiet about their battle with cancer”.  The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here:

1. Talking about Cancer
2. Managing your illness

Firstly, as I have an international audience, I thought I’d introduce what might not be a well-known British trait – the ‘stiff upper lip’.  For the uninitiated, I’m defining this as “One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence.”  That perfectly explains the accompanying graphic!  That definition also covers the two key themes above, talking about it and managing the illness.

Talking about cancer

There appears to be a lessening of this way of thinking in the past 30 or so years. However, I think this trait remains prevalent, particularly (but not exclusively) in the more senior citizens. I’m not convinced that a stiff upper lip is something confined to the UK as I learn how some of my overseas friends cope. I also think it might be more prevalent in men, you just need to look at the gender split on cancer forums to see that.

As someone with a cancer blog which has fielded over a million views, I can hardly be accused of keeping quiet about my cancer (edit: now nearly a million).  However, that is a relatively new thing since diagnosis in 2010. Following that diagnosis, I kept my cancer ‘secret’ to close family, a few selected friends and only those at work who actually needed to know for administrative purposes. As I said in my blog “Sorry I’m out of service”,  …..the image of ‘invincibility’ was important to me at that time and I thought I could deal with it and still have the same ‘look and feel’ in my life as I had before. Someone suggested that I should go home one day and my response was “the only way I’m leaving this building early is in an ambulance. Foolish? Absolutely (but in hindsight of course!).  It eventually became impossible to find the same ‘look and feel’ and it took me 3 years to come out of my cancer closet.  I’m still pretty good at a ‘poker face‘ but I do occasionally play the ‘cancer card’.

Managing your illness

I suppose people have such varying personal circumstances and different characters will deal with managing their illness in different ways. Some rely totally on their medical team.  I get this and I guess that’s what I did at diagnosis but now I know a lot more, I now wouldn’t rely 100% on this strategy – and no offence to my current team is intended, I’m just more ‘hands’ on now.  Some rely on support groups. For example, take patient forums where there is a broad range of patient engagement types. Some people talk a lot about their issues, every cough, sneeze and ache is a worry. I suspect they are simply looking for support or they might be frightened and worried about a particular problem. Perhaps some are more reserved or they already have enough support elsewhere. Maybe they simply get some support by reading about the experiences of others with the knowledge they have that safety net if they felt they ever needed to ask a question. Of course, when you compare the ‘guesstimate’ of NET patients vs online patient forum numbers, the vast majority of NET patients are not on an online forum. Interestingly, I have many people following my blog on Facebook, twitter and WordPress, who are not on any forum – in some ways, this might be a good option for some.  That said, I’d like to think my own group offers a good service.

I find myself managing my illness on a day to day basis – if I pop a vitamin tablet in my mouth, that’s managing my illness, so small things count too.  I like to assess any issues carefully to avoid wasting other people’s time and generating unnecessary alarm and drama. But do I have a stiff upper lip?  Yes – I think I’ve always been like that and the ‘going home in an ambulance’ statement above confirms that.  However, I suspect I’m now more of a realist i.e. I’m aware of the signs, aware of the risks and I know there’s a possibility of me becoming ill in a short space of time. I need to avoid that. Sometimes I have a ‘battle’ with my ‘stiff upper lip’ but it’s normally a question of judgement and risk assessment.  Key questions I ask myself are: ‘Is what I’m experiencing normal’ and if so ‘it is dangerous’. If it’s not normal, ‘is it connected to NETs’ or ‘is it a regular illness’.  I’m also lucky to have a managed NET surveillance regime thanks to my local NET MDT and Centre of Excellence.

I remain alert but I won’t normally ‘suffer in silence’ for too long.  Please don’t either.