Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

Awareness, Patient Advocacy
[caption id="attachment_3076" align="aligncenter" width="350"] You have what?[/caption] I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?".  Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship
But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks.  The vast…
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Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION There's a constant debate regarding the validity of the term 'Carcinoid'.  I've posted about this a few times and as far as I know, the debate has been raging for some years. EDIT APRIL 2020.  The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours  (effectively removing the term from GEP NETs) - read more - click here Edit May 2020.  So what about other areas not included in GEPNETs above? Please note there are still loose ends in some of the blue books, particularly Pulmonary, Urinary and Female Reproductive Organs. Hopefully these blue books will be updated in…
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The trouble with the ‘NET’ – Part 1 – Cancer Myths

The trouble with the ‘NET’ – Part 1 – Cancer Myths

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey.  In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news.  Unfortunately social media 'misinformation' includes…
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Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide:  10 more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015.  In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama's 'four more years' tweet was the biggest retweeted post ever up to that point after he thanked his 22 million…
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Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer).  Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient.  For me, this can be attributed to a number of…
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Every Day is World NET Day!

Every Day is World NET Day!

Awareness, Inspiration, Patient Advocacy, Survivorship
Opinion:In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me.  Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery.  Read about this here - I even woke up on November 10th after major surgery.  You'll note the title of this post is "World NET Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". The build-up to these events normally doesn't start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held,…
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Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy
Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases.  In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are.  Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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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 into 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. Neuroendocrne Neoplasms - Under-diagnosed or Under-reported? Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a…
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Hadrian’s Wall Day 5 – Pass the morphine!

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [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…
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Hadrian’s Wall Day 4 – Welcome to Cumbria!

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_1030" align="aligncenter" width="640"] Lanercost Priory[/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…
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Hadrian’s Wall Day 3 – Spectacular but wet!

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [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…
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Hadrian’s Wall Day 2 – The wall appears

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_966" align="aligncenter" width="480"] PLANETS on the Wall[/caption][caption id="attachment_967" align="aligncenter" width="480"] Wall design change[/caption][caption id="attachment_968" align="aligncenter" width="480"] From wall to house[/caption]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…
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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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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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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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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?

Patient Advocacy
what have the Romans ever done for us? .......... apart from better sanitation, and medicine, and education, and irrigation, and public health, and roads, and a freshwater system, and baths, and public order .......  :-) Well they also left us the outstanding Hadrian's Wall which is the first topic of today's blog.  In Jan 2014, the oldest piece of paper in my 'in tray' was a newspaper article about the World Heritage Site of Hadrian's Wall - it's dated 28 Sep 2003.  When I read it, I warmed to the idea of doing it but procrastinated for over 10 years.   To cut a long story short, Chris and I are going to walk this wall 26 - 31 May to raise funds for PLANETS Charity and to raise awareness of Neuroendocrine Cancer. (After note…
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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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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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