Keeping the conversation going

When I bent down to pick up the gauntlet which Marie had sent in my direction late on Wednesday evening, I had no idea that the resultant post and re-post would attract nearly so much attention.  Being part of the challenge brought a real sense of kinship.  What particularly astonished me was the strength and immediacy with which a host of posts appeared around mental health in connection with a cancer diagnosis.  And the message came across loud and clear!  Once cancer is introduced to our mind, it plays havoc with it. Yet, we feel that we should hide these troubles, such is the stigma of mental ill health.  Judging by the speed at which posts and re-posts appeared, this was not a new unfamiliar topic, but something very much at the forefront of our cancer experience.  And particularly at the forefront of our continued cancer experience long beyond diagnosis.

I was particularly surprised, that when I re-posted my earlier discussion about Captain Paranoia, to see that it generated even more comments than the original.  In fact there were almost double the number of comments.  This is clearly a discussion which must be kept alive and kicking.

So here I am with a short sequel, keeping the conversation going, and adding in a couple of extra spoonfuls of pepper to the mix.  Firstly, I am posting a marvellous poem from Sarah of Breast Cancer Lottery which she wrote in response to the post about Captain P.

Mr Paranoia

Hello Mr P so we meet again,
I hear the seconds ticking I must be insane,
Midnight as come calling and I am awake,
How much more Mr P must I take,
You shed doubt in a tired mind,
My reasoning you will grind,
I know my doubts will be nothing,
Mr P why are you bothering?
I hate your whispers of doubt,
If you were a person I’d knock you out,
The damage you do with your negativity,
Can even stump my creativity,
Why Mr P? Why are you here?
Why do you create so much fear?
I want to sleep move forward from this pain,
But instead I’m sat awake again and again,
Dawns chorus has begun,
Mr P look what you have done,
At least the birds are happy,
Now I will be left feeling crappy.

And secondly, I am sharing for a second time, the post I wrote earlier about Capt P and his relationship with Dr Google.

A sinister business partnership?  Or a conspiracy?

As I settle back into the swing of things, I know that not far on the horizon is my next round of checks.  For now though, I am still in an upbeat frame of mind following my break and the appointments are far enough ahead not to feel imminent.  So that means that Captain Paranoia is also on a bit of a break.  Although he may not be lurking on my shoulder at the moment, I know he is causing his mischief in many other lives.

With this slight distance I am feeling more rational than can happen at other times regarding the future.  A clear indicator is a glimpse at my web browsing history.  It is immediately obvious that I have not consulted Dr Google for a while.  In fact, not since Dr W laughed at the wirple, back in early July.

This is when I spot a rather interesting connection.  There appears to be some kind of business relationship between Dr Google and Captain P.  A rather sinister one at that.  And they both appear to benefit and feed on each other in this arrangement.

Does it sound familiar?  At the first sign of an ache or pain, appearance of a strange shape or bumpy area, development of a rash or spot, Capt P appears and starts whispering (or shouting) that Houston, we have a problem.  And what do we do?  Too often we run straight to Dr Google who is waiting, grinning malevolently in his 24/7 online consulting room with far too much information, much of it ill organised and not necessarily current.  He overwhelms us with graphic images and what appears to be terrifying confirmation of our worst fears.  Our minds freeze with another round of fears and worries.

We eventually log off.  Sleep is elusive, as the information from Dr Google churns around in our minds.  Capt P takes over another shift and cranks up his efforts to maintain a wearing and ongoing onslaught on our thoughts.

In this welcome space of clarity which I find myself in just now, it is abundantly clear that if Dr Google’s online Diagnostic Service was unavailable, then Capt P would not have such a great hold over us.  Similarly, if Capt P could be kept at bay, we would not be so compelled to consult Dr Google.  The challenge is then how to try and break this cast iron partnership and weaken the power which they wield over us.

In my view, having this knowledge is in itself power.

This week’s Twitter discussion focused on Post Treatment depression and there was a very lively and open sharing of the emotional fragility we have following a cancer diagnosis.  My own view is that while depression is very much a reality for many people post diagnosis, I feel that one thing we all have in common is what I would call a post diagnosis “frame of mind”.  This reflects the fact that we live life differently after diagnosis and we are generally very vulnerable to fear and anxiety.  We are far more prone to worry about our future.  The checks and regular monitoring are massively reassuring – but only if they show nothing worrisome.

This frame of mind is a fertile ground for the sinister partnership of Dr G and the Captain.

We do have tools at our disposal to stand up to the evil duo however.  In particular, we have each other in the online breast cancer community.  We understand each other and respect the harrowing worries that we encounter.  Many a time have I had my hand held across the divide.  We also have a number of reliable sources of internet information and we should ensure that we do not consult Dr Google indiscriminately.  We should turn up at the virtual waiting rooms where we know our consultation will be fair and credible, such as the Breast Cancer sites and not that terrifying Google images search engine!

So what do we have then?  We have an evil duo who are in all likelihood working in cahoots – Dr Google and Captain Paranoia.  They are supported by an arsenal of information and detail which we cannot begin to interpret without a very smart medical head.  To counteract this we have a wide reaching and sensitive community who “get it”, and understand our fears and anxieties.  We also have our “real life” Doctors – our oncologists and our surgeons for example.  They not only know their stuff, they know us, and mostly can guide us through the minefield of distressing and baffling details dropped in front of us.  We usually only see them at our checks and they are subjected to the collection of questions which we have been saving up in anticipation of our reunion with them.  Often we are waylaid by unexpected blood results of other questions and realise in the days following our appointment that we still have unanswered questions.  And Capt P just loves to latch on to these questions and twist them around in our minds.  He refers us directly to Dr Google……..

We need to try and break this cycle, fed by the Capt P and Dr G alliance.  I know that is far easier said than done.  Dr Google is far too accessible and Capt P ensures that his visitations are as distant as possible from our real life support.  We must therefore make a concerted effort to resist Dr Google.  Capt P will then be weakened in his efforts to derail our thinking.  We have helpful guidelines, such as the 2 week rule (if a pain, ache or suspicious bump lasts for 2 weeks it needs to be taken to a Doctor).  We have our online support.  Oh, did I already mention that?  I guess that out of the sinister partnership, Capt P could possibly be credited with having a modicum of use.  He keeps us alert.  It is critical for us to be aware of our bodies and any changes that could be significant.  But to go any further than that sees him as a trouble maker who needs to be kept in his place.

I hope that this exposure of this intimidating duo can prompt us to do one thing.  To enable us to take firm control of our situations and enable us to strike a balance of being vigilant, sensitive and proactive without being obsessive.

Knowledge is indeed power.  So listen here Dr Google and Captain P – you guys are  RUMBLED!!!

* * * * *

 

We must keep this conversation going…….

5 thoughts on “Keeping the conversation going

  1. We absolutely MUST keep the conversation going. You hit a nerve with that Captain…we’ve all had visits from him. Unwelcome and sinister. I love the poem by Sarah. So true. Keep writing, P. Let’s organise a mutiny against this captain.

    • Oh I love the idea of mutiny! All aboard! We are such a strong team we could sink the ship in no time ;)

      I hadn’t realised how much this continues to resonate. Yes we must keep shouting.

  2. Thank you for this most excellent posting! This resonated deeply with me, the paranoia, Dr. Google, everything. Thank you for making me feel that I’m not alone. This whole experience — cancer and its mental after-effects are real and unfortunately very isolating. Yes, and keep the conversation going!

    • That is also what keeps me going, the realisation that we are not alone. I loved your post, it really made think and it sounds so like my own experience too. Keep shouting, whispering and conversing :) xox

  3. Pingback: Sirens and Hypers and Scares, Oh My! : Mourning Has Broken

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s