Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, Technical NETs, Treatment
[caption id="attachment_6231" align="aligncenter" width="500"] IORT[/caption] New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil…
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Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_5953" align="alignnone" width="480"] Day 4 of 6 - entering Cumbria from Northumbria[/caption] In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.   A few months before this trek, I had come to a crossroads and I was unsure which direction to go.  That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited…
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Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there was a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  "Please flush after use" - erm...yes sure but actually -…
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Exercise is Medicine

General
  I suspect we all know exercise is good for us but it does sometimes take quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).  I did write about this in 2014 (Exercise - it's a free prescription).  In fact, my blog  was actually created to document my return to fitness and good health 12 months ago! I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy 'single letter' lists called the "5 E's" of things to avoid - one of which is 'Exercise'.  Clearly 'Exercise' needs putting into some context as everybody needs…
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Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_2784" align="aligncenter" width="500"] Things are not always how they seem[/caption] In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience and we met some really interesting people on our 6 day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was therefore relieved I hadn't responded to her initial rudeness. However, It got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what's going on inside their heads and bodies. Visible Illness can have awareness benefits Conversely in 2018, I was absolutely…
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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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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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My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_13469" align="alignnone" width="720"] Seriously![/caption] 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…
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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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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="alignnone" 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…
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Hadrian’s Wall Day 5 – Pass the morphine!

Daily Blog
[caption id="attachment_1087" align="alignnone" width="640"] Me Resting![/caption] [caption id="attachment_1088" align="alignnone" 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…
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Hadrian’s Wall Day 4 – Welcome to Cumbria!

Daily Blog
      [caption id="attachment_1030" align="alignnone" width="640"] Lanercost Priory[/caption]   [caption id="attachment_1034" align="alignnone" 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.  There were some marvellous…
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Hadrian’s Wall Day 3 – Spectacular but wet!

Daily Blog
[caption id="attachment_976" align="alignnone" width="480"] Temple of a Roman Sun God (epic fail today)[/caption] [caption id="attachment_977" align="alignnone" width="480"] The lone sycamore[/caption] [caption id="attachment_978" align="alignnone" 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…
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Hadrian’s Wall Day 2 – The wall appears

Daily Blog
    [caption id="attachment_966" align="alignnone" width="480"] PLANETS on the Wall[/caption] [caption id="attachment_967" align="alignnone" width="480"] Wall design change[/caption] [caption id="attachment_968" align="alignnone" 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 a blister between us! When we set off from our farmhouse (Ironsign), it was overcast…
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Hadrian’s Wall Day 1 – Sunny Newcastle

Hadrian’s Wall Day 1 – Sunny Newcastle

Daily Blog
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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If it’s not raining, it’s not training

Daily Blog
[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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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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What have the Romans ever done for us?

Daily Blog
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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From Blagging to Blogging

From Blagging to Blogging

Inspiration, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_12740" align="aligncenter" width="500"] 84 mile walk along a 2000 year old structure[/caption] Well I've been blagging it for years so now decided to 'blog' my blags.  This 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 Cancer 2.  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…
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