Childhood Neuroendocrine Cancer – 1 in 7 million!

General
September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many child cancer articles and I notice the UK's top soap Coronation Street is already featuring such a story. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available.  I don't know that much about Childhood cancers but the Cancer Research UK site has a nice summary on this page.  You will note that over half of childhood cancers are either Acute Leukaemias or Brain Cancer. I do know a lot about Neuroendocrine Cancer…
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If your Doctors don’t suspect something, they won’t detect anything!

If your Doctors don’t suspect something, they won’t detect anything!

Awareness, Patient Advocacy
Opinion:One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.Neuroendocrine Neoplasms - Under-diagnosed or Under-reported?Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a number of 'difficult to diagnose'…
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Met an old friend today; his name is Gym

General
I think I first met Gym at school in the sixties - we normally met on a weekly basis. We were reacquainted when I joined the army and hooked up more frequently! It was there I met some of Gym's friends, known as PTIs (Physical Training Instructors). Their opening line was normally "Ten times round my large bronze chest...... GO! " and then we would proceed with the 'beasting'.  I suspect I might now be prodded by the PTIs on my facebook page - there are one or two out there :-) I've always been a fairly fit guy but over time my fitness had faded.  I'm to blame entirely for this but I suppose it hasn't been helped by a diagnosis of metastatic Neuroendocrine Cancer.  However, I'm now turning this negative…
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Am I at fighting weight?

General
I recently blogged about my boxing experience in post: http://wp.me/p4AplF-r7  In those days I was just a wee skinny 16 year old guy! I think I was in the Bantamweight category, somewhere between 8 and 9 stone (50 - 57 kg). Although I gained some weight after years of service in the military, I didn't really 'bulk out' in the wrong places until I left the military aged 45. Even then it wasn't what you would call overweight or obese. I joined a gym, determined to maintain some form of fitness.  I sacked it due to pressures of work but then joined a few years later for another go. However, work and associated commuting took over again and I withdrew once more. In those days, I didn't really weigh myself and…
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Glass half full or half empty?

Inspiration, Living with Neuroendocrine Cancer
Most people have probably heard of the saying "is your glass half empty or half full".  If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way.  I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I'm only human and I've been in some dark places in the last 5 years since diagnosis. However, I believe to continuously be in 'half empty mode' can have a…
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“You’re from Dundee – you must like fighting”

General
Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight! Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner.  However, I believe one of those attributes is accurate.  I was once 'volunteered' for boxing because my home town was Dundee!   Read on... Dundee was put on the boxing map in the late fifties and in the early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang up in Dundee over this period and you can see the evidence of his legacy today.  It's also timely for this blog that Dundee…
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Four years on

General
On Saturday, I glanced at the calendar on my phone and recognised the date as some sort of anniversary - 26 July.  It was exactly 4 years to the day I received my diagnosis of Metastatic Neuroendocrine Cancer. It all began 2 months previously with a routine asthma clinic appointment when I mentioned to the Nurse Practitioner that I thought I'd lost half a stone in weight.  She immediately said "did you mean to lose the weight" and the answer was "no" on the basis that I just simply thought I was heavier.  As a precaution she sent me for a set of blood tests and then a retest.  I later marched into the GP's office (having been asked to come to the surgery) to hear the GP say "I…
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Laughter is the best medicine

Humour
How many times have you heard it said that laughter is the best medicine?  I can certainly remember this phrase being said when I was a child.   There is some Science in Medicine (more applied than pure), so where is the scientific evidence for this claim?  Well after all this time, someone has decided to carry out a study.  Apparently when we laugh, we exercise our muscles, get blood flowing, decrease our blood pressure and stress hormones, improve sleep patterns and boost our immune system. It's a new area of research known as 'Psychoneuroimmunology' - the study of how emotions affect our nervous and immune systems. It's still a relatively new area of research, but the insights are promising. The study looked at 20 healthy older adults in their 60s…
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Finding Hotspots

General
Just back from a nice relaxing holiday in Tenerife.  I don't know about you but when overseas I find myself looking for 'hotspots' everywhere I go....... I don't mean trendy entertainment venues, I'm talking about the modern phenomenon known as a WiFi signal! I also mean free and open connections.  Even recent price reductions within Europe did not tempt me to use 'data'  overseas and I didn't even want to take advantage of the £2 per day upgrade of my mobile phone account which would give me access to my minutes/MBs overseas on a temporary basis. I just look for free WiFi and I also make a point of turning off 'data' on my phone before leaving the country to avoid expensive mistakes.  No Scottish jokes please, I'm just frugal :-) My hotspot…
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A Highland Coup

General
[caption id="attachment_1633" align="alignnone" width="640"] Highland Coos[/caption] One of my favourite memories from childhood is the vision of the finest looking cattle in the UK - the Highland 'Coo' (for those who are thinking I've made a mistake in my title spelling, read on!).   The memories are not confined to seeing them grazing in the fields but I also remember them as the iconic symbol of a famous Scottish toffee known as "Highland Toffee" made by McGowans in Stenhousemuir - also famous for its football team :-)  Having researched this toffee for my blog, I just found out the firm went bust in 2011.  However, the brand survived and the toffee bars are now made in England (grrrrr, sacrilege!). The first overnight stay during the Hadrian's Wall challenge (see blog links below) was…
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Things are not always how they seem

General
I met quite a few interesting people during my walk of Hadrian's Wall last month. On Day 3 when Chris and I were accompanied by Dave Taylor, we could see a couple heading up the hill that we were progressing down.  We couldn't help noticing that the male of the duo was continually stopping to talk to others and we were no exception.  His wife kept overtaking him at these points not saying a word. He got chatting to me and Dave and we worked out he was Irish.  I love Irish people and I know they like to talk - but this guy was really good at it!  We discussed where we were all from and he proceeded to tell us that most big companies in the world were run by Irish people or those descended from…
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Up and atom!!

General
  I already explained Day 1 of this 3 day 'scanathon' in blog: http://wp.me/p4AplF-lY     Bit techy but added some humour to dilute some of that down. Just a quick post to elaborate on the remainder of the experience which was completed yesterday. I've had this scan twice previously with the last one in the summer of 2011 and both were done in Bournemouth Hospital. Due to a merging of the Bournemouth and Poole Nuclear Medicine Departments, these are now done at Poole. Interesting journey from/to Ringwood especially in the rush hour!  Also, the hospital parking was challenging to say the least.  I covered a total of 120 miles (4 visits) plus £9 in parking fees.  However, it's a small price to pay for the benefits received. They gave me…
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Forget the posturing, it’s results that matter

General
  [caption id="attachment_1467" align="alignleft" width="288"] Good Results[/caption]   You can tell there is a football competition on and they don't get bigger than the World Cup which I believe is one of the world's great sporting competitions second only to the Olympics?  Like it or not, this is a time when football fans suddenly become experts, apparently knowing even more about the game than the managers, players, pundits and commentators - particularly in hindsight after the match!  Is it just me or do you also wonder why these 'armchair pundits' aren't in the aforementioned jobs :-) Social media has increased the reach of the armchair pundits and consequently we now have to listen to running commentaries of every game and of course their disapproval of any decision or infringement against the…
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I’ve just been nuked!

General
When I was in the military, I was given basic training in how to deal with the threat of Nuclear, Biological and Chemical Warfare (known then as NBC).   However, there was a focus on the chemical side as that was classed as the most defendable of the 3 and probably the most likely scenario (but that's only my opinion!).  I think the training for nuclear attack consisted of the following advice: 'put your head between your legs and kiss your arse goodbye' :-)  Some 13 years after departing that wonderful organisation, I'm now allowing radioactivity to be injected into my body! At my age I'm no longer physically able to put my head between my legs but in any case, I need not be concerned about this controlled 'contamination'…
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My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'.  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain.  One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur.  If you've had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET)…
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Beyond the Wall

General
One of the first tasks on return from Hadrian's Wall was to catch up with my favourite TV show Game of Thrones (GOT).  The latest story concerns Tyrion Lannister, the dwarf son of Lord Tywin Lannister. Tyrion is technically the heir to House Lannister, thus why his father Tywin is plotting to get rid of him using the murder of King Joffrey as the reason. There was even talk of him being banished for eternity to be the Lord of the Sworn Brothers of the 'Night's Watch' on the Wall to face the 'blue painted' barbarians not to mention the mysterious 'White Walkers'.  Can't wait until tonight's episode :-) The GOT writer used Hadrian's Wall as his inspiration for the Wall in the TV series.  This fictitious wall is a colossal fortification which stretches along…
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So what next?

General
[caption id="attachment_1155" align="aligncenter" width="480"] Wet but happy![/caption] Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway.  The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint!  Very happy to be finished :-) We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet.  That's not to say the training was a waste of time, far from it. The terrain across the walk is so varied ranging from tarmac to mud (and we mean deep mud!).   The weather could…
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Hadrian’s Wall Day 6 – Mission Complete!

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_1144" align="aligncenter" width="2560"] Sunset over the Solway Firth (Scotland in the distance)[/caption]The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway.  We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room.  It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born.Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it's flat but the first half is a wonderful mix of colour…
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Hadrian’s Wall Day 5 – Pass the morphine!

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy
[caption id="attachment_1087" align="aligncenter" width="2448"] Me Resting![/caption][caption id="attachment_1088" align="aligncenter" width="480"] The M6![/caption]When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA - Patient Controlled Analgesia.  Basically, I could click a button whenever I felt the post-surgical pain was too much.  As this administered morphine, safeguards were built in - for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn't accept a request for another 5 minutes.  That handheld push button device was never far away from my hands!I could have done with it today.  Yesterday I felt my right knee going downhill…
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Hadrian’s Wall Day 4 – Welcome to Cumbria!

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy
[caption id="attachment_16938" align="aligncenter" width="640"] Day 4 highest point[/caption][caption id="attachment_1030" align="aligncenter" width="640"] Lanercost Priory - the end of Day 4[/caption][caption id="attachment_1034" align="aligncenter" width="480"] Milecastle 48 - Poltross Burn[/caption]That was a long day and a hard walk!  Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex-Army colleague, Jim Waterson.  Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84.  Usual banter all day brought back more memories and news about some old mutual friends.  Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.The route was a mixture of hilly crags and rolling fields as we entered Cumbria.…
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Hadrian’s Wall Day 3 – Spectacular but wet!

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy
[caption id="attachment_977" align="aligncenter" width="480"] The lone sycamore - famous for being in a Robin Hood film[/caption][caption id="attachment_978" align="aligncenter" width="480"] Chris & Dave being daft[/caption]Chris and I adopted the famous military 'buddy buddy' system this morning by checking each other's feet and applying blister pads.  We then set off on a hilly section with some spectacular scenery.  But first we collected our friend Dave Taylor who was walking this tough section with us.The forecast rain didn't arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers.   Pretty rough underfoot with plenty mud and damp grass.   Stonework was in some places dangerously slippy.  I fell once, fortunately I managed to miss landing on the ubiquitous sheep droppings!Some of the scenery…
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Hadrian’s Wall Day 2 – The wall appears

Patient Advocacy
This was the first real piece of the wall we say and it's the second day We must have been doing a blistering pace today!  Four of them – I claim 3 and Chris has one.  Nothing spectacular but a discomfort we could do without. Blister kit has been deployed and resupply to see us through the week will RV with us on Day 4 at Steel Rigg (cheers Jim W). In hindsight I should have deployed the blister kit last night as I had a feeling my tender feet would be even more tender by end of play today.  Four months of training and not a blister between us!When we set off from our farmhouse (Ironsign), it was overcast but dry, perfect walking weather. We had been told to…
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Hadrian’s Wall Day 1 – Sunny Newcastle

Hadrian’s Wall Day 1 – Sunny Newcastle

Inspiration
The first day under our belts but it wasn't easy.  We always knew it would be an odd walk with the first two thirds in urban environments. The first third of the route took us from Segedumun Fort, the official start/end of the wall walk in the east. There is evidence of Newcastle's previous and declining shipping industry all the way along the Tyne.  The second third took us through modern Newcastle including impressive views of the Sage and Baltic Arts Centres on the opposite bank and the iconic Tyne Bridge which we walked under.  Quite a lot of riverside flats on show, some with nice-looking views. The final third takes you to the outskirts and out into the countryside.  We were able to see Heddon-on-the-Wall on top of a…
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My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship
There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was nearly in 2010 but I have a lot of people to thank for some excellent progress.  My son & daughter's families have all been there for me and although my 4 grandsons don't quite understand the situation, their presence in my life is a great…
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Just got (a) shot in the buttocks

Patient Advocacy
[caption id="attachment_857" align="alignnone" width="640"] San Francisco Pier 39 - 2008[/caption]I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable.  I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go!  On the opposite side of the scale, he's also played in some quite gory films such as 'Saving Private Ryan' - the first 20 minutes sure tested out my surround sound and subwoofer! However, one of my firm favourites is Forrest Gump.  A multi-decade spectacular, amazing acting, amazing locations, amazing visual effects…
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My blog goes International!

Awareness, Patient Advocacy
One of the most interesting statistics in my blog app is the total number of views recorded each day.  It even breaks the total down into which posts were most viewed and which countries the viewers were from (but please note it does not identify the name or any other details of viewers). I'm always very pleased to have readers from overseas locations - I hope they enjoy reading my blog and find it useful. To date, these include readers from USA, Australia, Canada, New Zealand, Barbados, Belize, France, Germany, Switzerland, Belgium, Netherlands, Luxembourg, Portugal, Austria, UAE, Bahrain, Philippines, Nigeria, Kenya, Croatia, Ireland, Sweden, Italy, Japan, Czech Republic. Neuroendocrine Cancer is not unique to UK, it's an International disease. If you research, you will find Neuroendocrine Support groups in most countries. There…
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Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment
I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.   I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…
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If it’s not raining, it’s not training

Patient Advocacy
[caption id="attachment_678" align="alignnone" width="640"] Cold and about to be wet![/caption] Only a week left until Chris and I set off on our 84 mile trek across Hadrian's Wall in the North of England.   We've been training for this since January 2014 and probably covered sufficient distance to have walked the wall 5 times over!   Didn't stop us going for a fast short walk this morning and despite the heat there was no sweat.   I think we're ready :-) For the last few days we've been thinking it might be tougher if this heat continues.  Only a month ago, we were saying it might be tougher with all the rain we were having!  We had a few occasions where we got wet but we just had to get on with it - fortunately our…
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“I may not be rich, but I do have priceless grandchildren”

Patient Advocacy
[caption id="attachment_4300" align="alignleft" width="300"] My 4 Grandsons (and me if you look carefully!) - picture taken in 2015[/caption] Most of us will have experienced the ubiquitous quotations that somehow manage to go viral around Facebook and emails? Mother, Father, Son, Daughter, Grandson, Granddaughter etc.   I instinctively want to share those and like the post but something nearly always prevents me from doing so.  I suspect there is something in me that says "don't follow the crowd" or perhaps I'm just a shy private person at heart?  (I can hear some of you laughing .....).  However, today, I'm publishing the fact that grandchildren are indeed wonderful!  So what has brought on this sudden emotional outburst? I have 4 grandsons, 2 each from my son and daughter, aided and abetted by…
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Dr Google will see you now

Dr Google will see you now

Humour, Patient Advocacy, Survivorship
Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn't.As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for many patient reported issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise…
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Is there life on other Planets?

Patient Advocacy
When I was a young lad, I was fascinated by Astronomy.  Not only could I tell you the name of each Planet in order of distance from the sun, but also the actual distance!  In those days, space travel was really taking off culminating in the first manned moon landing in 1969.  I remember staying up all night with my dad so I could watch it on TV (in black and white of course).  The talk then was of where next, Mars? After all this time, we still haven't landed people on that Planet - just shows you the complexity of such missions (and cost of course).  Nobody ever expected to find life on the moon but the excitement about finding life outside earth was as exciting then as it…
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Shrek and Princess Fiona

Shrek and Princess Fiona

Humour, Inspiration, Survivorship
I was looking through some old photographs and came across this one I thought you guys might like.  It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time.This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex paratrooper) and his lovely wife Babs.  Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit 'peaky' on the plane. Despite a…
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If you suspect it, you can detect it

Patient Advocacy
I thought long and hard about today's post because no matter what I say, it will pale into insignificance when put alongside the words of Stephen Sutton who sadly died today at the tender age of 19.  The words used by his mother are particularly powerful. He was certainly a courageous, selfless and inspiring man.    However, although he successfully raised £3.2million for Teenage Cancer Trust - a phenomenal amount for a very worthy charity, I believe Stephen also leaves behind many other very valuable legacies and lessons.  I'd like to focus on two in particular. Social media.   This is one of the key technical innovations of the last 20 years and has changed the way in which society lives and communicates and it's still evolving.   It has altered the way…
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North of the wall is a dangerous place – you must never go there!

Living with Neuroendocrine Cancer
  There was a 60 minute silence last night as another episode of Game of Thrones was aired.  Not a Facebook post or tweet in sight.  This has to be 'up there' in a list of the best TV series ever?  Don't know about you but I'm sometimes confused about who is who and how they are related and/or connected!  (see useful chart at the bottom of this post) Chris and I love the introduction bit.  She likes the music, I like the geography.  There are some obvious correlations there, e.g. 'The Wall' is meant to relate to Hadrian's Wall with those horrible barbarian Scots to the north :-)  Thank God Hadrian's Wall and the climate in particular, isn't as bad as portrayed on GOT!   I did contemplate using 'trousers' as…
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Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I had minimal exposure to nurses throughout the first 55 years of my life.  I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should've seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'.  That nurse was professional, thorough and she clearly went the extra mile for her patients.  She has my eternal thanks for sending me down a…
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My treatment is a pain in the butt!

My treatment is a pain in the butt!

Living with Neuroendocrine Cancer, Treatment
This header is a bit 'tongue in cheek' (....did you see what I did there?)  I'm very happy to have this treatment every 4 weeks - I can think of far worse scenarios.  When I was first diagnosed, the dreaded word 'Chemo' was discussed.  Actually, Chemo isn't particularly effective in treating Neuroendocrine Cancer, although I've heard of cases where it has made a difference. Today's letter is 'L' and there are a few. Lanreotide This is currently my mainstay treatment and I look forward to it once every 4 weeks.  It is injected 'deep subcutaneous' in the upper outer quadrant of the buttock. Prior to my diagnosis, I was a tad squeamish when it came to injections, even the smallest would make me cringe and I couldn't bear to watch…
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Through the Keyhole?

Patient Advocacy
  Through the Keyhole is a Panel Game Show on telly originally hosted by Lloyd Grossman (who?) and then Sir David Frost.  It was resurrected last year hosted by Keith Lemon.     Sorry to disappoint you but this blog is about a different type of keyhole.  Today I'm on 'K' words (I drew a blank on J). Keyhole Surgery After I had major surgery in Nov 2010, I left the hospital knowing that I'd be returning later for another but I needed to be fit enough first.  This took some time but in Apr 2011, I returned for further surgery, this time on my liver to remove several secondary tumours.  I was told it would be done using 'keyhole' surgery.  Fortunately for me, Neil Pearce is one of the world's most experienced…
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Queen Mother of the Isle of Wight

Patient Advocacy
  Decided to do a one off today after reading a story published on 7 May on the PLANETS Charity Facebook page https://www.facebook.com/pages/PLANETS-Charity/122088044556397?fref=ts The is a story about a lady who was faced with one of the most deadly cancers - Pancreatic Cancer, where the 5 year survival rate has not risen for the last 40 years (another story for another time).  Young and fit people can struggle with this cancer and its treatment so it must be ultra tough at 83.  Her attitude and strength of character in facing up to this terrible disease is very inspiring to me and an example to all. My own cancer type is not as dangerous as this one.  However, I did have some fairly extensive surgery from the same surgeon and reading this story…
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What have the Romans ever done for us?

What have the Romans ever done for us?

Humour, Inspiration
"What have the Romans ever done for us?" Reviewed and updated 5th October 2021 .......... apart from better sanitation, and medicine, and education, and irrigation, and public health, and roads, and a freshwater system, and baths, and public order ....... 😊 (apologies to those not familiar with Monty Python stuff!) Well, they also left us the outstanding Hadrian's Wall which is the first topic of today's blog.  In January 2014, the oldest piece of paper in my 'in tray' was a newspaper article about the World Heritage Site of Hadrian's Wall - it was dated 28 Sep 2003 entitled 50 great things to do in Britain (it was second only to seeing Stonehenge at dawn).  As a history buff, I warmed to the idea of doing it but proceeded to…
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Who needs a gallblader anyway?

Who needs a gallblader anyway?

Diet and Nutrition, Treatment
We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go. You may have read previously that I receive a monthly injection of Somatuline Autogel (Lanreotide) which keeps me well.  The Lanreotide patient leaflet clearly states "Lanreotide may reduce gallbladder motility and lead to gallstone formation. Therefore, patients may need to be monitored periodically. There have been post-marketing reports of gallstones resulting in complications, including cholecystitis, cholangitis, and pancreatitis, requiring cholecystectomy in patients taking lanreotide. Fairly certain I could find a similar statement on the Octreotide leaflet. I also searched for studies and…
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F words

Patient Advocacy
[caption id="attachment_173" align="aligncenter" width="284"] Does my flush beat yours?[/caption] 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…
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Exercise – it’s a free prescription

Patient Advocacy
[caption id="attachment_147" align="aligncenter" width="480"] Gorgeous Chris xxx[/caption] [caption id="attachment_146" align="aligncenter" width="700"] Check out my new Fat Face hat :-)[/caption]   My E Blog on 5 May 14. Exercise I'm no stranger to exercise having served for 29 years in Her Majesty's Forces.  However, I'm not 21 anymore and I have some health challenges.  Chris isn't 21 either - despite her youthful looks (brownie points...).  Some people are quite impressed by our commitment to walk 84 miles. However, I'm hoping that's going to be the easy bit as the training regime we are putting ourselves through has been hard work and time consuming.  Today we walked 12 miles with Chris suffering neck and back pain and me with a sore right toe.  This followed a 9.5 mile on Saturday and an 8…
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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship
The clouds are gathering. Diagnosis. The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests, and now referred to an Oncologist.  There were many hints along the way. I felt in control. Rewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre.  I felt in control.  I'm happy as a pig in the proverbial!  My annual Asthma clinic comes along and it's an opportunity to work at home for the day....yahoo - no commuting! "Hi Ronny" - "Hi Liz". Blah Blah Blah. However, glad Liz was taking it seriously - I…
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The subject nobody wants to talk about

Patient Advocacy
There are quite a lot of words beginning with C so I'll only cover a few.   The Big C The subject which must not be discussed - or is it?  I read a useful article a month ago where the writer debated where we might be if, 50 years ago, we were as open about the 'big C' as we are now.  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress.  Certainly the latter is behind some of the change in thinking in a number of ways.  People are living longer and we now have much better tools to discover and treat Cancer (there I said it). Moreover, because we are more open about Cancer, there is more awareness.  According…
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Bournemouth Marathon

Patient Advocacy
  Hope you enjoyed the 'A' blog yesterday.  Some of you might also note I changed the previous blog titles to make them more catchy. Here's a few 'B's Bournemouth Marathon I once ran a marathon aged 28 in Verden West Germany 1984.  I was there defending the free world from Communism (ahem....). It was a tough gig even at that age and the training was even tougher.  I'm therefore delighted to announce that my old mate Steve Davis (pictured above), former Orienteering buddy and 'Quaff Club' member, has nominated my PLANETS Charity page as his chosen cause when he runs this event in Oct.  Cheers Steve - you're a very generous guy - maximum respect.  I'll drop off the gorilla suit shortly :-) Blood Tests I touched on this important topic…
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Army to the Rescue

Patient Advocacy
  I promised you an A-Z so here are some 'A' headlines: Agenda.  The walk is 84 miles long - Chris and I will be walking from East to West over 6 days as follows: 25 May - Staying with friends near Newcastle 26 May - Wallsend to Heddon-on-the-Wall (with Nick Naylor) 27 May - Heddon-on-the-Wall to Chollerford  28 May - Chollerford to Once Brewed (with Dave Taylor) 29 May - Once Brewed to Lanercost (nr Brampton) (with Jim Waterson) 30 May - Lanercost to Carlisle 31 May - Carlisle to Bowness on-Solway 1 Jun - Lazy breakfast in our lodgings and then head south homewards! Army I've had some amazing support from ex Army colleagues, not just a donation to the cause but also the use of their time and access to their contacts.…
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What’s it all about?

Patient Advocacy
My plan yesterday was to blog for 26 days using the alphabet A to Z as a guide for the content.  That would have taken me to 25th May, the day before my walk of Hadrian's Wall commences.   However, Chris and I were playing a game we used to play with our children on long car journeys "I can see something beginning with....."  On analysis, it appears I might struggle with certain letters!  Guess what....K, J, Q, U, X, Y and Z are not necessarily the problem!   I'm still intending to do this but may cover more than one letter in a single blog, thus now requiring less than 26 days in the lead up to the walk. You've probably heard the term "I'm not doing this for the good…
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Blogging is a full-time job – and I walked right into it!

Blogging is a full-time job – and I walked right into it!

Inspiration, Living with Neuroendocrine Cancer, Survivorship
The original postThis is a new skill so bear with me, please!  The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris.The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway.The walk is for two purposes:1.   To raise awareness of Neuroendocrine Cancer2.  To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours).As a lead-up to the actual walk itself, I'll be blogging daily with an A to Z of my life-changing experience together with any interesting stories arising from the training and preparation for the walk itself.  During the period of the walk, the daily blogs will focus on progress along the route.  I hope to…
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