Lee's story

 

I  think there are many reasons to treat SBC (the diagnosis that I have) with a DENIAL approach. The reasoning being - I’m well today - so why not shut out the so-called ‘negative’ thoughts that now stalk me? 

 

And if I care (as I do- deeply) about the time I have left with my child and husband then I have a kind of duty to wring out as much happiness as possible from our precious moments left together - and push away those bad feelings that bubble under the surface. 

 

And if you appear to dwell too much on the sad realities of this disease you may be seen to be ‘giving up’ on living. Or worse than that - your ‘negativity’ may hasten your demise. Don’t we read all the time about breast cancer being caused by ‘being’ a certain sort of woman? The book by Gabor Mate explicitly links cancer pathology with disease. Thanks, for that Gabor - so I must have given myself cancer. Yes, these unhelpful ideas surround our condition. I've even had a friend suggest that I need to work on my 'inner unresolved' problems. Again this feeds into the 'I brought it on myself' narrative. 

 

 

So all around you - people encourage you to keep your ‘attitude’ in check.  At all costs - be positive. They praise me for my smile. Positivity is seen as the only possible armour in this situation.  But I am only human. And that smile slips. Behind it , I am grieving for the life with my loved ones that I won’t get to see. And behind their bravery - they are also brimming over with grief. And I feel lately a need to face the facts of my situation - even the ones that fill me with horror. 

 

I want to know how long roughly I have. Or I want to know what the stats say regarding SBC and women /my age/ my tumours. They don't like giving out this information. But I’m a big girl and I can handle it. I want to know things like: do most women like me die at home or in a hospice? Does the end come quickly? What length of time is NICCE's 'moderately severe' actually based on? Can they explain that to me?  

 

 But these are difficult things to say in the consulting room sat next to my husband. So recently, I wrote my doc a letter - asking that we address these shadowy thoughts (questions above) that I want the answers to. 

 

Could it be the oncologist and nurses want to ‘protect’ me from the upsetting facts of my condition? I don't know. They say - many women live for 20 years or more/ but concede that some women less so.  Then there are the 'google stats' - how true are they? How out of date. Who knows.  Where do they keep up to date information of this nature? 

 

 So what to do. The strength / self understanding/ worldly wisdom that is required to navigate this new landscape is immense. Often beyond me. Dealing with death sat on your shoulder in a society that treats it as an ugly taboo - further complicates things. And the medical profession - well - they are not set up to help you travel this end section of your life.  They deal with medical. If you cry they suggest pills or that you talk to someone. I told my doctor I think I’m having an existential crisis. Bless - he sort of just looked at me. I know I’m starting to be a difficult patient 🙂he suggested I  seek out a professional. But this comment suggests that my 'head' is somehow wrong.  

 

But…I don’t feel that my head/ thinking is ‘off’ or wrong. I can’t help feeling that my struggle to come to terms with it all - is maybe necessary and normal as I process and assimilate this new state of being.  I have had to learn to let go and to grieve whilst appreciating the life I have left. You can’t just flick a switch and do that.  You have to figure it out -  mainly by yourself.  Or you stay in DENIAL - bottle it all up and just get through it best you can.

 

So why isn’t there greater psychological guidance? A greater understanding of what we often privately go through. I wonder. This I would like to see changed- I think there is space for a new approach - that offers better guidance. That may prepare us for the tsunami of emotions we will encounter on this journey. 

 

Between us all - all the people who have died before us - there must be a 'collection of comforting wisdom' to pass on - to help all of us in our hours of need to make peace with death and prepare ourselves for the end - whilst making the most of the 'wellness' that the drugs give us up unto that point.  

 

We've dispensed with religion but then find ourselves in a secular society with an aching soul and need for spiritual balm. A bit of counselling doesn't really cut it in this situation. 

 

Maybe there is a place for death doula's?  Something like that?! Humanistic type spiritual healers - who help prepare you for the next life.