I could start this one with the phrase that I don’t know whether I am coming or going.

The word back from the Royal Marsden was that they had analyzed my biopsy sample and, get this, it didn’t match any of the gene sequences they know about. Trust me to have one of the ‘other ones’. I may have the exact numbers wrong, but the gist is that they track around 40 sequences out of a possible 500. They only develop directed or targeted drugs for the known 40, so that rules that out.

Or, does it? They called with that news and said they would keep on looking for a trial. Then, they called again and said they had something to discuss. But they only needed at that point to check my availability – even before Xmas. I said yes, of course. A letter duly arrived with an appointment for me in early January. Ah! Quel grand mystère!

I will of course go along to find out more, but I also need to find and keep a balance between the two extremes of “I’ll try anything” and “I’m giving up”.

There is a very timely talk on this as part of the BBC 2014 Reith Lectures. It’s by Dr Atul Gawande , a practicing surgeon and Professor in Oncology at Harvard. He talks about how doctors are not brilliant in dealing with the end-stage for their patients. He says it would help if doctors had four questions that they always asked palliative-stage patients, and if they stayed quiet to hear the answers.

The four questions are:

  1. What is your understanding of where you are with your illness at this time?
  2. What are your fears and worries for the future?
  3. What are your goals if time is short?
  4. What outcomes would be unacceptable to you?

He talks about one study in which half of the patients got normal oncology care and the other half got normal oncology care plus they saw a palliative care doctor who would discuss with them what their priorities and goals might be for the end of life. There were a number of benefits that only befell to the 2nd group, but the amazing one was that they lived 25 per cent longer. Mind you, most of them only had 16 or so weeks, so that isn’t a miracle cure or anything like.

When I had been ‘bumped’ from the Cambridge early phase trials and just after I went to the Marsden for the first time, I had a meeting with my ever-believable oncologist. “Let’s say that nothing will come of the Marsden thing”, I said, “and let’s talk about the end-game as it may play out for me”. He did as I bid and gave it to me straight. I have a very good understanding of where I am with my illness at this time. I believe that 2015 will be relatively normal for me, health-wise. I believe that in 2016 things will start to deteriorate with my lungs. I believe that 2017 and especially 2018 will be “borrowed time”. I’m OK with that. I don’t have a lot of fear and worry about it all. I’m going to die, and that’s the long and short of it.

We had the “you should make a bucket list” of life ambitions talk (he didn’t use the exact term, but lists were mentioned). I’m probably supposed to want to make some last great contributions to the world. I should probably see the Amazon rain forest or the Aurora Borealis.

And there is still time. Time for you and time for me. Lots of time for all the indecisions, visions, and revisions that will follow.

For now, my ambition is humdrum. I want to make a success of my work, mainly so it will be worth something to somebody after me. I want to show people that this isn’t all so bad, so if I can find the dignity of death they will be less unhappy after I go.

But I am not ruling out writing The Great Novel and (maybe better still) kicking some odious politician in the b*lls. We’re a risky bunch, the walking dead 😉

There will be time, there will be time    
To prepare a face to meet the faces that you meet;    
There will be time to murder and create,    
And time for all the works and days of hands    
That lift and drop a question on your plate;