Giving up???

Posted December 5th, 2008 by Jane

I am beginning to realise how hard it is to have a conversation about perhaps/maybe/possibly stopping treatments and how that is so readily seen as ‘giving up’ and ‘not fighting.’ And the hardness isn’t just in normalworld, its perhaps even more difficult in cancerworld.

I have never used the language of battles and fighting about cancer..such unhelpful metaphors, and so punitive when battle is ‘lost’, such implicit judgement of those who ‘fail.’

On one of the on line breast cancer forums I frequent I’ve started musing about what happens when vinorilbine fails, have started talking about not doing any more tretament. Now this musing is born of the reality that there isn’t really any more treatment to try other than myabe a Phase 1 Marsden trial. I have been urged to go to Europe (where yes more trials going on and a few more chemotherapies being used with very limited benefits), try misteltoe (an alternative remedy popular in Germany but with no scientific evidence of efficacy), above all NOT TO GIVE UP. Others say to me: ‘I do not intend to die. I have too much living left.’ Well right, I’d like to have a lot of living left too and I wish that not dying was as simple as a statement of intent, but it seems a bit more complex to me. I understand, of course I understand, why people chase treatments, but I only see that as one possible response to the ticking time bomb of terminal cancer. Is not drawing a line under relentless searching as valid a response?

Many of the people urging me to keep searching are much younger than me, most have children, some very young children. My heart breaks for these young women facing such early death and wonder if maybe my stance is an age thing…after all I am nearly 60. Of course I still feel young, and am bitterly sad that I won’t live into my 80s as I had always anticipated and dying this young is my own little personal tragedy, but it is different, it is very different from being 40 or 37 or 33, having a 12 year old, a 4 year old whatever.

But still the barely concealed criticism (or is it my own internal critic…do I imagine it?) that not chasing around the UK or the world for another drug is ‘giving up’ hurts.

My ‘unusual’ presentation’…regional metasteses, rather than distant metasteses, means that the cancer is less immediately life threatening than it would be if aready in my lungs and liver. Being ‘triple negative’ also means that the drug options are limited. I think this fact is hard to accept..for those who don’t have cancer and therefore don’t know the niceties of different kinds of breast cancer, for those who do have other options and for those 15% with advanced breast cancer who are triple negative. I can count of the fingers of one hand the women I have ‘met’ on cyber forums who survive with triple negative metasteses for over five years. I know too many who have died within a year of re diagnosis. I know that my own history is in fact, as triple negative stories go, not a bad one, but a relatively good one.

I don’t see myself as ‘giving up’. I’ve not refused any tretaments this far..but I know I have to accept that as far as worthwhile treatments are concerned I am nearly at the end of the line. I don’t want to be taking another useles chemotherapy till a few days before I die, ‘palliative’ as the aim may be. I’d prefer some other palliative form of relief.

I’ve written before about the necessity of reframing hope. I got this idea after reading Jerome Groopman’s book: The Anatomy of Hope. It is true that other than at the level of fantasy I don’t any longer hope to survive. Hard as it is to comtemplate the reality that death will come my way and probably in the next year or a bit more..or..or..less, that actually is the reality, and so within those parameters I have to create new little bits of hope..some to do with the choices of what I try to do with my life now (and believe me those living in the moment headlines and living out a few unfulfilled dreams are bloody hard when you’re exhausted all the time), and some to do with what the ‘end of life professionals’ call ‘putting your affairs in order’..for me a reflecting back through memories and projecting forwads for those I love…how can I make it easier for them afterwards? All this feels like time better spent that lobbying my PCT for avastin (another cancerland suggestion) or ‘trying pegylated doxuribycin’ (another one: a version of a drug I’ve had before which never worked then so why should it now?).

‘Giving up’ is so perjorative..a term borrowed from the battelfields of surrender..which is where it should belong, not in the language of cancer. I am living with, and dying of cancer…and trying to do both as best I can…which often isn’t very well at all.