F words

A few ‘F’ words today 🙂

Flushing

In early 2010, I had been experiencing mild and infrequent warm feelings in my face and neck and I did notice a slight reddening whilst looking in a mirror when it occurred.  It was odd and nothing like I had experienced before.  I thought nothing of it, dismissing it as something to do with my age!  When I was going through the diagnostic phase some months later, the Consultant who carried out the initial set of tests was interrogating me (literally) for any clues which could help him pin down the nature of my problem (I now know he had evidence of cancer but not the type).   I ran through every single niggle and pain I had attributing most of them to age!  Just as I thought the barrel was empty, I suddenly remembered about the flushing and mentioned it.  Eureka.

Neuroendocrine Cancer is not that common.  It can occur in various parts of the body.  Some types present with vague symptoms but my type can present with something called ‘Carcinoid Syndrome’  – this is even less common.  This syndrome includes (amongst others) a symptom of facial flushing invoked by the secretion of particular hormones from functioning neuroendocrine tumours.  This syndrome which initially worsened, did not come fully under control until after my first major operation some 6 months later.    At the time I was keeping my condition private in the workplace which led to some interesting conversations in meetings!

The treatment for this syndrome is a man-made drug type known generically as a ‘Somatostatin Analogue’.  Basically this drug inhibits the release of excess hormones and therefore reduces the effects of the syndrome.  I now receive a monthly injection of this amazing drug which comprises a rather large needle in the ‘jacksie’.

Fibrosis

One of the other strange behaviors of this type of tumour is that they can sometimes cause fibrosis, including retroperitoneal fibrosis – again due to the release of excess hormones (mainly serotonin).  In my case, the tumours had caused a dense fibrotic retroperitoneal reaction encircling my aorta and intravenous cava (biggest artery and vein in the body respectively) almost blocking the latter.  I signed up to the risks for this ‘technically demanding’ phase of my initial operation and two surgeons spent 3 hours (within the 9 hour total time in theatre), dissecting  this fibrosis achieving a 270 degree clearance freeing them up and re-establishing normal flow.

Thank you Mr Neil Pearce and Mr Mike Phillips!  Mr Neil Pearce is also a co-founder of PLANETS Charity.

Family & Friends

One of the most difficult things I have ever had to do was to tell family & friends about my condition.   It has taken me until now to divulge this to a much wider audience.

I couldn’t have got through this without the help, support and understanding of family and friends, in particular Chris.

Love you all.

Ronny