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NEURO ENDOCRINE CANCER

Life must go on even with the ups and downs of having a gastro intestinal illness.  If you give up, you can go downhill and die rather quickly as this is such an important part of your body.  Yet there is still very little understanding of Pancreatic and Heptobiliary diseases (including cancer).  It is clear, however, that early detection of cancers in these areas can dramatically improve survival rates (with late detection there is very little hope of survival).  It is also evident that we need techniques, such as stem cell liver regeneration, that can help the organs regenerate once they have been through the incredibly invasive techniques that the medical profession have in store for these illnesses.

My story began in 2014 as I ran out of energy and turned yellow.  My bile duct became ever more restricted by a tumour growing on the head of my pancreas.  I was gardening one day and found I could no longer get the spade into the earth.  I just had no energy at all.  Scans confirmed the presence of a large primary tumour on the Pancreas head and two further metastatic (secondary) tumours in my liver.  If this was Pancreatic Cancer I would have been sent home then and there with a big bag of pain killers and told to go and sort my house out.  Well, the house is already pretty tidy (except when the dog comes in from the garden after a mole searching expedition) so Mo Hilal, the consultant who I was very fortunately appointed to, decided to do a laparoscopic biopsy on my liver.  Once he had a bit of one of my liver tumours in the lab they found out that I actually had Neuro Endocrine Cancer.  This disease produces far slower growing tumours than Pancreatic Cancer’s offspring.  I was advised that I, therefore, had a good chance of growing a lot older if he performed a Whipple Procedure to remove my primary tumour and liver resections to remove the liver tumours.  Happy Days – wife crying with joy at the reprieve and Novenas being said all over North London and Ireland by my wife’s caring family.

This is where the Liver and Pancreatic R&D Cancer Charity steps in.  All the money raised is used directly to research better methods of early detection and ways of better helping patients recover from the surgery or chemical processes involved in removing the tumours present.  So the charity, for example, directly funds PhD students to research into using stem cell technology to regenerate livers that have been badly damaged by disease. There are no paid employees of the charity – we’re all volunteers.  The PhD students are supervised by Mo, who is also an honorary senior lecturer at Southampton University.

To put your faith in God is one thing – and has validity – but when you get a chronic disease in your Pancreas or Liver (or in my case both) you need to put your faith in someone who can treat you physically – this means you need a high quality and caring consultant who is prepared to keep an open mind towards a range of symptoms that are always different from person to person. Giving a straight line diagnosis and prognosis as per some medical reference book is impossible in this game.  You need very high quality, thoughtful and intelligent care.  This is what I have been fortunate enough to come across with Mo Hilal and his team.  The charity that he founded is a further expression of a wish to improve the lives of his patients.  As a patient you feel this deeply – and it is comforting.

This conviction towards doing something good and worthwhile within this complex field is exactly why I am so supportive of this charity.  From the roots upwards it comes from the right place, the heart.

For me it began with chronically itchy hands and feet and quickly led on to Jaundice, sudden weight loss and a debilitating loss of energy.  Now, over a year later, I have had five major abdominal surgeries, including a Whipple Procedure to remove my Pancreas head, Duodenum, Gall Bladder, Bile Duct and part of my stomach.  On 17 February 2014, in a nine hour operation this was all chucked out and then, with great skill, pieces of my small intestine were used to plumb everything back together again and make it functionable.  At the same time I had two liver resections to remove the tumours there.  The operation, under Mo’s deft hands went well.  I lost about a pint of blood only and was put into the High Dependency Unit in as good a condition as a man with my illness could expect to be in.

Two weeks later I was having my stomach pumped due to a bowel obstruction but otherwise the recovery seemed to go OK.  In May 2014 I had my left Thyroid removed as it also contained a tumour – although this one turned out to be benign.  No left thyroid now but I’m happy I did not have a further malignancy in this area.

In October 2014, when I was just getting back into the swing of my working life I was gripped by tremendous stomach pains.  I was admitted into a hospital in London where they found that adhesions (a common side effect of the Whipple procedure and abdominal surgery generally) had twisted my bowel such that it became obstructed and extremely painful.  After several days of nil by mouth and no improvement the surgeon decided to operate.  He and his colleague told me afterwards that there were not just a few adhesions but so many they were slicing and cutting away all day.  Once they had sewed my back up and my bowels had started to move again I began to feel the benefits of the surgery and no longer have the dangerous, excruciating pains caused by these adhesions.  Although, as this is very much an individual reaction, it may happen again and it might not.  It depends on my body and how it reacts.  What are you going to do – not have the original life saving surgery because there will be a few side effects or try and get through it with as much of a smile on your face as you can muster?  I chose the latter, although the smile was not always there – I did have a good grimace for the pain though.

A PET scan a little after this operation revealed five more tumours in my liver. Five major abdominal operations to date have removed six tumours.  The tumours just seem to keep on coming, however.  Now I’ve got one growing on my bile duct right in the centre of my liver and one growing in another liver section.  The bile duct bad boy is not resectable by surgery and cannot be radiologically treated so we’re looking at other options.  There are a few smaller lesions that may be future tumours but it’s too early to tell.  We’re looking at a treatment plan to deal with all these upstarts.

How I feel about all this, you may ask.  The answer is that I feel strangely positive – I’m in the hands of my surgeon and I’m in the hands of God.  What will be, will be - I have a strong feeling that I’ll be fine and that my future will be a happy one.  I’m not worried.  Even the present is not getting me down at all.  I’ll beat this and come out having learnt a lot and having had a life changing experience on the way.  Basically, it is no fun but you’ve got to draw out the positives that you can.  The cancer has spread and will do what it likes.  The medical team will hunt it down.  I’ll look after my health, spirit and emotions to keep myself as strong as possible.  There doesn’t seem to be another way.  Fear does not have a role to play in a recovery scenario.