I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary.  However, in the usual media ‘double speak’ which can sometimes pervade the coverage of such events, he is said to have Lung Cancer.  As I said in that article, sometimes with Neuroendocrine Cancer – the devil is in the detail and you just need to dig to find it. Annoying, we shouldn’t need to dig as he doesn’t have Lung Cancer.  I wrote about this anatomical issue here.  This is exactly what happened to Steve Jobs and Aretha Franklin.

No sooner had I published the Nick Robinson article, I was alerted to the broadcasting of a film about rock star Wilko Johnson who has the most amazing story to tell. Wilko is a former member of Dr Feelgood, a famous British R&B band who were pretty popular in the 60s/70s/80s and remains so today. He was once also part of the Blockheads group supporting Ian Dury.

He made his acting debut in Game of Thrones. He plays Ser Ilyn Payne in the first and second series, but his character was written out after his diagnosis. His selection for this part was based on his ‘piercing 1000-yard stare’ which he is famous for effecting during his on-stage performance (in real life he’s actually known for being a warm, funny person prone to laughter).

In 2014, Wilko was diagnosed with Pancreatic Cancer and was told he had a year to live. One year later, a photographer friend Charlie Chan (who just happened to be a doctor) commented that he looked too well and was still doing his routine and fast-paced musical performance, that something was perhaps not right about this diagnosis.  To cut a long story short, he was retested and re-diagnosed with Neuroendocrine Cancer with a primary in the pancreas.  However, it was a large tumour (7 lbs 8oz in weight and the size of a melon) and the surgery was ‘extreme’ taking 11 hours and with a lower-than-normal chance of survival. He seems to be doing OK so far. However, the ‘double speak’ is also being used in his case as nearly all reports and news articles state he has Pancreatic Cancer.

Until I saw the film on BBC1 a few days ago, I hadn’t realised the film was even being made. The first half of the film is really about a man who thinks he is going to die, and he doesn’t really have an issue with this – he misses out on all the usual emotions moving straight to acceptance.  He also decided to do a ‘final’ gig teaming up with Roger Daltrey (The Who) – you can watch this from a link below.

I suspect the film sponsors were totally surprised to be continuing the film to include his re-diagnosis, his surgery and the beginning of his recuperation (I suspect Wilko was more surprised though).  Having now watched the full 90 minutes, I can say I enjoyed it (particularly the second half) but I suspect it won’t be everyone’s ‘cup of tea’.  However, it gives an insight into the man himself along with his journey. Some of the music clips will get your feet tapping. A little bit of me wants to get to know him more as I hadn’t realised he is a bit of a philosopher (ex-English teacher) and an astronomer in addition to being a rock star and generally down-to-earth ‘geezer’. There are some good quotes in the film including “if the cancer is going to kill me, I don’t want it to bore me”. This probably explains his very positive attitude when told he would die and decided his ‘new normal’ would be his usual normal!

There is not a single mention of Neuroendocrine Cancer (unfortunately).  However, the film came out on DVD 11 Dec 2015.  There might be limitations on playback in non-UK countries but WATCH THE TRAILER click here

I have in fact had an online chat with Wilko Johnson who said he would help with Neuroendocrine publicity. Check out the conversation here:

There’s also an interesting interview with Roger Daltrey (member of The Who and friend of Wilko).  There is more detail about this “other” cancer and his recuperation but again the word Neuroendocrine is not mentioned. Watch Here

Here is the gig with Roger Daltrey, which Wilko thought would be his last. Watch Here

Having watched the film, I now have more sympathy with Wilko’s position and there’s a bit of me thinking we might hear some more about his condition downstream ………..

23 May 2016 – two new clips to add to the story:

1.  Newspaper interview 21 May 2016.  Click Here.
2.  Interview with Victoria Derbyshire on 23 May 2016.  Click Here.

Incorrect diagnoses of Pancreatic Cancer rather than Neuroendocrine Cancer are not isolated to Wilko – read a similar story about “Patient E” and “Patient F” by clicking here.