Don’t worry, I really am OK!

dont-worry-im-ok
I really am OK!

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.

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 a quarter of a million views, I can hardly be accused of keeping quiet about my cancer.  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 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 but I wouldn’t rely 100% on this strategy).  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 a 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.  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 remain alert but I won’t normally suffer in silence for too long.  Please don’t either.

Thanks for reading

Ronny

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Author: Ronny Allan

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9 thoughts on “Don’t worry, I really am OK!”

  1. I rarely talk about my NETS, My children don’t ask and I don’t raise the subject. It has been nearly 8 years since I was diagnosed and I have had bowel and 2 liver resections. I have never said the words ‘woe is me, why me’ so I guess I have inherited my English heritage trait of a ‘stiff upper lip. But the collywobbles are setting in a bit today, as I will travel to Sydney tomorrow for a Gallian 68 PET scan. It has been 12 months since the last one and even though I have the faith that my monthly Octreotide injections are keeping the growth of my tumours at bay, I am feeling a bit nervous about the results. I have found in the past there has always been a little surprise when I go to the Drs for the results. I am very fortunate to have a wonderful husband who is always here for me. The positives about tomorrow is that I get to go on a road trip, the weather will be warmer (I live in cold Canberra) and I get to see the wonderful people who work in Liverpool (NSW) hospital. Thanks Ronnie for being you and always somehow tapping into how I feel. Take care.

  2. Stiff upper lip ot acceptance of ones lot, the ‘Oh wow is me’ approach, just adds to the burden, you (I) still have to do what I have to do (I’m my wife’s full time Carer). Wailing and renting my garments would change nothing, I will still need to do what needs to be done, until one day I won’t be able to do it.

  3. Definitely agree about the difference between men and women, my brother-in-law was diagnosed with advanced prostate cancer at Christmas but keeps it very much to himself. Even finds it hard to speak to the Macmillan nurses

    1. NETS have 50/50 or 60/40 split depends on where you look. I reckon forums are 90/10 split. My Facebook page is 80/20. The ‘engagement rate’ is even worse!

  4. I agonised over whether I ought to go public. I too had “Mr Bulletproof” coursing through me, balanced with the desire to protect my children. In the end, I felt it easier to come to terms with living my new life “with boundaries”, having told the kids I also might be unwell sometimes.

    1. Boundaries are good and can be adjusted to suit. Good luck with the running. I’m walking over Kinder Scout this weekend – hope the rain stays away!

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