Stick to the script?

In the film of The Two Towers (the Lord of the Rings), there's a scene in the battle of Helm's Deep as the orcs have over-run the two outer lines of defences. The king says "The fortress is taken. It is over....... So much death. What can men do against such reckless hate?" Aragorn responds "Ride out with me. Ride out and meet them." Even in the midst of a desperate situation there is hope.

When Jen was going through chemotherapy, I thought of that scene. Even though I generally reject all those military metaphors of cancer as a battle (see my earliest posts), the language of chemo (first-line, second-line, third-line) lends itself to such images. Seeing Jen's cancer brush aside first-line chemo, and be held up for a few months by second-line chemo, I had this picture of the crushing inevitability of this army of orcs wearing down the defences, just as metastatic breast cancer is almost certain to kill you.

At that point you want the script to be like a film -- an unexpected hope, a hero comes forward. In the cancer context, you want a miracle drug to become available. In Jen's case, we briefly though about avastin - $100,000 per year, and a month or two increase in overall survival - and gave up on that option. At the start of July, our oncologist talked about PARP inhibitors, which had really promising results for third-line treatment (promising being a 40% response rate). However there were no clinical trials open that would allow access to it. I'm not convinced in either case it would have made much difference.

I also discovered that people expect you to stick to the script. Quite a number of times people asked me about Jen's treatment, and I briefly outlined Jen's prospects - median survival between one and two years. It was clear that I was supposed to say "We'll fight it all the way and never give up, we'll beat this cancer" etc etc. The reality was much less comforting, and people were clearly flummoxed by my response.

In moments of desperation, I found myself paradoxically hoping for the movie script outcome. When I got Jen to hospital and she was essentially unconscious, I outlined her condition to the doctor in casualty and asked if they could do anything. I had this brief fantasy that the doctor would say "Don't worry, she'll be fine, we'll just give her a shot of X". Instead of course they ran a few tests, and told me gently that there was nothing they could do except transfer her to palliative care.

Even now, after Jen's death, I find that some people have a fairly fixed idea of what grief should be like, and that there's a 'buried' conventional expectation of a year of mourning before anything can be allowed to change. Even within myself, I find that my grief is not what I expected - the intensity of the first few weeks has rapidly given way to a flat grey landscape in which there's nothing too exciting or dramatic at all.

At heart I think the issue is that our exposure to real illness, death and dying is so limited that we often resort to cliches and stereotypes to fit it into our world, the scripts that we feel events or people ought to follow. Cancer particularly engages people's fears, and makes them want neat outcomes - scans and early detection will always save you etc. I'm sure the same is true of depression, where sufferers frequently experience quite unhelpful advice and responses. The most helpful people are generally those who have been into this dark parallel world themselves, and they are often most helpful by not giving advice. The challenge for me is to be a better listener and friend to others in their situations, and not stick to the script.