NETwork with Ronny © – Community Newsletter JUNE 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is June 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

  • NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here.
  • Personalised PRRT is highlighted.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.
  • Videos from LACNETS.  I’ve not watched them all yet due to holiday but they are always great!  Click here.
  • PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here.
  • Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out this link.
  • Awareness.  Giovanni from LACNETS generates awareness in her local area – I have no doubt that awareness saves lives.  Read here.
  • Lanreotide.  Ipsen announces approval in Japan for treating NETs.   Click here.

NET Cancer Blog Activity

June was a slower month in ‘new’ blogging terms mainly due to holiday but even during this holiday, I’m being invited to external projects and a continuing flow of private messages. I’m still suffering with back pain but patiently waiting to see a physiotherapist. However, despite a low month for brand new blogs, I still managed for the first time to break through the monthly blog view figure of 20000.  ……..Thank you all so much, a lot of this was down to your support for some scheduled posts whilst I was on holiday ♥

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.   The nominations period ends on 7th July and I’ll let you know how you can vote for me. A vote for me is a vote for Neuroendocrine Cancer awareness.

BREAKING NEWS (…ish).  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.   You can see my profile here: http://www.curetoday.com/community/contributors

 

New (or significantly updated) Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Awareness Activity in June 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 239 subscribers – up 25% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK.
  • I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Click here to read more.

Speaking Engagements

  • On 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.
  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external)

On 12 July, I’ve been invited to speak to Ipsen (UK). Still setting up this short notice meeting, details to follow in a separate post.  Additionally, I was interviewed by a health reporter and separately by a health consultant. I’m not at liberty to provide details yet but if anything is published in the public domain, I will of course publish it on my social media channels.

Remember …….

Social Media and Stats

Blog Milestone.  In June, I tipped over 310000 views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

Where did June 2017 Blog views come from? – Top 10 countries:  Germany on the up (wunderbar). And thanks to USA!

 

For interest. the 10 Ten Facebook followers by Country – Germany still sneaking up (wunderbar wieder).  Interestingly Canada always reads more than Australia despite fewer followers.

 

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and the sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in June.  Onwards and upwards!

Thanks for reading

Ronny

Hey, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter MAY 2017

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is April 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

This year, it’s occurred to me that I’ve gone beyond just being known as a ‘blog’ and have transformed into something with a much wider focus within the NET Community and beyond. I’ve added a new section called NET News. This is a catch up of stuff I’ve accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces ‘Highlights’ which will be renamed to ‘NET Cancer Blog Activity’ and cover my efforts to generate awareness and to help others.

NET News

The following news items may be of interest:

  • PRRT.  Advanced Accelerator Applications (AAA) the manufacturers of Lutathera for PRRT have announced they are on track for a mid year resubmission of the data (NDA) to the US FDA for their consideration and hopefully approval.  They also indicated that the EMA authorisation may happen in Q3 (period 1 July – 30 September) – this would be key for UK where the treatment was withdrawn from routine service in 2015.  Read more here.
  • New Trial.  Based on use of an immunotherapy drug ATEZOLIZUMAB (Tecentriq) combo’d with BEVACIZUMAB (more well known as Avastin) which is a type of biological therapy.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.

NET Cancer Blog Activity

Like April, May was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. I continue to suffer back pain but my GP is now sending me to a physiotherapist (I sometimes forget I’m a patient too!). However, despite a low month for brand new blogs, I still managed to accumulate the third biggest monthly blog views ever.  ……..Thank you all so much ♥

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow.

BREAKING NEWS:  I’ve been nominated for the 2017 WEGO Health Awards in two categories so far, Blog and Patient Leader Hero.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.   I’ll bring you more details in due course.

Speaking Engagements

On 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.

On 13 July, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting.  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other Engagements (external)

I contributed to an article written by the CEO of WEGO Health about the spread of fake health news (miracle cures etc).  You can read the post here –On Facebook fake news can be life or death

I wrote an article for Macmillan Cancer Support which is due to be published on 5 Jun 2017 (will post next week).  This is part of Macmillan Volunteers week and I volunteered to write about my recent experience in becoming a Macmillan Community Champion.

I took part in a Macmillan poster campaign last year and finally got to stand next to a working poster in my home town of Dundee!  Here’s me here next to the poster:

There are one or two others but they are not firm yet – but you’ll be the first to know when I know!

New (or significantly updated) Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Awareness Activity in May 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 192 subscribers – up 20% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.  The trailer for the documentary which will feature a NET Patient can be found by clicking here.  The actual documentary is now available on Vimeo and Amazon Prime.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Social Media and Stats

Blog Milestone.  In May, I tipped over 290,000 views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

  • Facebook 4689.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
  • Twitter3915 / 3017 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 292,626
  • Blog with most views: 9211The Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 Jan 2017.  Why the spike? ….. The Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one month: 19,303 in Apr 2017.  Why the spike? …. too many to list – see above!

Where did May 2017 Blog views come from? – Top 10 countries:  India on the up.

 

For interest. the 10 Ten Facebook followers by Country – Germany sneaking up.  Interestingly Canada reads more than Australia despite fewer followers.  India reads a lot!

 

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and the sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in May.  Onwards and upwards!

Thanks for reading

Ronny

Hey, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

community_titled_transparent_2013-10-22

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

PLANETS IORT LAUNCH INVITATION May 2016
IORT

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 Pearce) and my Interventional Radiologist (Dr Brian Stedman). Both of these brilliant and skilled people ‘worked on me’ for 12 months in 2010/2011 and I live to tell you this tale!  Shortly after my surgery, they decided to set up PLANETS to focus on providing additional support for Neuroendocrine Cancer and other types such as Pancreatic and Liver in which they specialised.

Mr Neil Pearce (L), Ronny Allan (C), DSr Brian Stedman (R)
Mr Neil Pearce (L), Ronny Allan (C), Dr Brian Stedman (R)

Intra-Operative Radiotherapy (IORT) provided by Mobetron is a bit of a game changer for advanced cancers which are hard to treat and remove. This development is said to be at the cutting edge of modern radiation oncology. Despite the heading, this treatment can be used for many cancers including Neuroendocrine, Pancreatic, Colorectal and Bladder.  It is a mobile version and can be moved to different operating theatres.  There are plans to eventually extend the portfolio to include Head and Neck, Oesophageal, Lung, Breast and Cervical cancers.  The technology can also be used on Brain tumours but there are currently no plans to offer this service.

The radiotherapy is applied during surgery which means the treatment can be delivered more directly without causing damage to surrounding tissue and organs.  It’s worth adding at this stage that this type of radiotherapy is not the same as PRRT.  Moreover, it is not designed to replace PRRT which remains an option for patients downstream if they still need it (in addition to other treatments such as Sirtex, liver emobolisatons).  Clearly dosage calculations would be required for cumulative radiation exposure over short timescales.  Worth noting that PRRT currently remains denied to patients in England.

The type of radiotherapy is more similar to conventional external beam systems and the key advantage is that it can be used for areas where tumours have just been removed or part removed or in locations which have a tendency to recur; and for inoperable tumours such as those surrounding vital structures.  Examples include: bulky pancreatic tumours, inoperable mesenteric root lymph node deposits, difficult pelvic tumours, metastases around the bladder, rectum or uterus and ovaries.  It follows that in addition to treating certain tumours earlier than would normally be possible, IORT may preclude the need for further treatment or at least extend the period post surgery where further treatment would be required.

Clearly there is a lot of excitement surrounding this first ever deployment of IORT which has raised the profile of Neuroendocrine Tumours in the UK national press – check out this article in the Daily Mail by clicking here. There is a useful animated video to watch by clicking here.

The official launch happened on Mon 13 Jun 2016 and Chris and I were very proud to attend.

Thanks for reading

Ronny Allan

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

 

 

 

Neuroendocrine Cancer Surgery – a patient experience (part 1)

Neil
Chris and I with our friend and hero Mr Neil Pearce – my surgeon.

First Surgery – 8th – 26th November 2010

Memories of my 18 day stay in hospital from 8 – 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NET Cancer is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients.

Prior to being diagnosed with Cancer, my experience with hospitals was very limited and I had always been a tad squeamish when it came to routine injections. So having major surgery with a projected 10-14 day stay in hospital was a massive challenge. However, I remember being fairly relaxed leading up to this event.  I suspect I had accepted my situation; and that a combination of pragmatism and trust in my surgical team had conquered any fear.

The surgery, which lasted 9 hours, was really in two parts, firstly to get rid of my primary in the small intestine plus any accessible locoregional stuff.  Basically the surgeon removed 3 feet of my small intestine, carried out a right hemicolectomy, and also removed ‘oodles’ of lymph nodes in the mesenteric region, with careful blood vessel reconstruction required. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels.  This is an issue which has returned in 2018 and you can find an update by clicking here.

Spookily, I woke up from the anaesthesia just after midnight on 10th November, I woke up on NET Cancer Day.

I’ve not spoken too much about the first week in the hospital after surgery – mainly because some of the details remain scant. However, there are four stories I remember in some detail and they even make me smile, although I wasn’t laughing at the time!

Physio (a synonym for pain!)

One of the key things I remember was the extraordinary amount of tubes and other things connected to my body. Had I drawn a picture, it would have looked like the map of the London Underground. Some of them were taking things out of my body (temporary ‘toilet’, wound drains, etc) and others were for putting things in (drugs, pain killers, nutrition, etc). My legs had ‘circulating leg wraps’ to prevent the formation of blood clots. They were very uncomfortable and sweaty but important.  I appeared to be pinned very tightly to the hospital bed – any thoughts of escape were quickly subdued by the sheer weight of equipment.  It was, therefore, a total surprise to me how soon the Physiotherapists arrived to administer torture 🙂  The difficulty of arranging all the tubes in order that I could just even sit up led me to believe it would not be possible.  However, they persevered and I had of course forgotten, this is what they do for a living! Putting the tube issue to one side, the very act of sitting up and putting your feet on the floor with a 12″ north to south abdominal wound still repairing is one of the most difficult and painful things I’ve ever done (even after activating my Pain Controlled Analgesia (PCA) – more drugs!). However, and I say this in hindsight, this is a very important part of the healing process and patients need to be compliant!  I eventually got used to it and starting off with a walk around my bed, a walk to the nurse desk, a walk up and down the ward….. this eventually led to a walk around the hospital once some of the tubes were removed.  However, I was feeling so bad one day, I refused physio which resulted in a lecture from my surgeon (see photo above) later that night – the discussion ended with the words “You are a winner”. It helped as I sprinted up and down the ward corridor next day!  Isn’t it amazing how a kick in the ‘ass’ can also function as medicine?

Pain Control

The Pain Controlled Analgesia (PCA) button was never far from my hand.  After surgery, it isn’t completely painless, but the PCA does help.  It normally contains morphine which helps kill the pain but comes with other side effects including sleepiness (handy), foggy brain, inability to focus, strange dreams and on occasion mild hallucinations (I swear the people on the wall picture opposite my bed were moving!).  After a few days, this was replaced by drip fed paracetamol (I think).

Re-establishing the food trail

I hadn’t given this too much thought prior to the surgery but when they remove sections of your intestines (in my case the terminal ileum and the ascending colon), there has to be a new join (anastomosis) and this needs time to heal. This means a gradual and gentle return to normal eating.  One of the most annoying tubes was the nasogastric tube (NG tube).  I woke up with this tube already inserted but around day 3 it was removed whilst I was awake (a little bit scary).  However, I was sick a few times (quite scary), so it was re-inserted (a little more scarier than removal).  However, once it came out for the second time (still a little bit scary), they gave me a rather tasteless drink called ‘Fortisip’ which apparently had the proteins and nutrients I needed whilst I waited to move onto normal food. My first proper food after a few days was ‘heaven’ – chicken soup followed by ice cream and jelly (for North Americans, please note jelly is not jam!)

Re-establishing the ‘poop’ trail

Technically, this is just an extension of the ‘food trail’ info above.  However, a story that I have hardly ever recounted follows.  I think this was around day 15/16 Nov or thereabouts.  My surgeon kept quizzing me on ‘gut feelings’ i.e. burping, hiccups, wind etc.  I hadn’t realised he was working out when to offer some help re-establishing this element of my recovery.  I think I was late so some milk of magnesia was given one morning. That evening, nothing happened and so the night shift nurses were primed to offer me a ‘special’ suppository which I was assured would be a great help in moving things in the right direction.  I declined their very kind offer to carry out the ‘insertion’ instead opting for some dignity retention – there wasn’t much left at this point but I was determined to hang onto it!  As I was laying there, I quickly scanned the remaining tubes (by this stage, I was down to 5 or 6), I reached round and it very quickly dawned on me that this was ‘mission impossible’.  I rang the bell as a signal that sometimes practicality overrules dignity.  Like the physio thing above, I had forgotten that Nurses do this all the time.  Ten minutes later, the bell again summoned the nurses who helped me and my tubes to the toilet. The toilet/bathroom was to become a familiar place over the coming weeks.

Following the surgery and when I was mobile, I weighed myself and found had lost a complete stone (14 lbs).  Weight loss led up to my diagnosis and continues to be an issue today – read more here.

Part two covers the second period of my 18 day stay and can be read by CLICKING HERE

Almost 8 years later, please check out my new challenge – click here.

wego-blog-2018-winner

patients included

 

 

Beyond the Wall

kingslapper_by_mkage-d51h47f

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 the northern border of the ‘Seven Kingdoms’. It was built to defend the realm from the ‘wildings’ who live ‘beyond the wall’.  It is reported to be over 700 feet tall and is made of solid ice!  Having stood on the highest parts of the middle section of Hadrian’s wall in wet weather, I can understand the connection.  However, one of the interesting observations I made during the walk was that some of the milecastles (small forts) had a north and a south gate indicating they were in fact functioning like a border control.  This would indicate there was movement between north and south and I suspect a bit of ‘tax’ being paid into the bargain!  I also observed that there must have been some sort of ’causeway’ to get over the man-made ditches that existed both north and south of the wall, some of which were very deep!  The milecastles in the hillier middle section had natural defences to the north in the form of steep slopes downwards and were therefore most likely to be defensive positions rather than control points.  

There is a common misconception that Hadrian’s Wall marks the boundary between England and Scotland.  Those who say it does are either being mischievous or their historical/geographical research is flawed (or both!).  In fact, England and Scotland did not exist until 1000 years after this wall was built.  It was only then that the position of the wall was used as a ‘divide’ (which makes you think what might have transpired had there been no Roman wall…… ).  The actual border lies some way to the north of Hadrian’s Wall (particularly in the east) but it isn’t marked by any substantial walls or earthworks. The medieval castles at Carlisle and Newcastle, each built close to either end of the Wall and on top of Roman forts, show how the Wall survived as a frontier structure in the 11th and 12th centuries.  The period between this era and the early 18th century marked continuous struggles and wars between England and Scotland eventually leading up to the Act of Union in 1707. During the later 18th century, people to either side of ‘the Wall’ became more unified as Great Britain developed into one of the world’s dominant powers. Accounts of Hadrian’s Wall during the 19th and early 20th centuries usually played down any idea of ancient divisions between England and Scotland. 

As a proud Scotsman who lives in England and someone who is also proud to be British, I’m concerned about the referendum where my fellow Scots are about to vote on whether they want to become independent from the United Kingdom.  I personally believe a yes vote would be a mistake for a number of reasons:

  • Great Britain only became ‘Great’ in the 18th and 19th centuries, i.e. when the British Isles were united as the most successful partnership the world has ever seen and Scotland played a significant part in this, probably punching above its weight within the partnership.  It’s a lot to throw away for romantic reasons.
  • Scotland already has significant autonomous powers including their own parliament.
  • Scotland already has its own culture and traditions and these are well known worldwide outside of (and regardless of) its inclusion in the UK partnership.  
  • We live in a globalised world where partnerships matter and I believe there are huge risks for Scotland going it alone.
  • Bankruptcy was one of the reasons Scotland signed up to the Act of Union.

I’m hoping the no vote wins through in 100 days time.

Look forward:

Since completing the Hadrian’s Wall challenge, I’ve started one of my testing phases with an Echocardiogram last week and an Octreotide scan early next week ready to meet with my Consultant Oncologist on 18 Jun.  For the first time, I’ll also be given something called a SPECT scan which I’ll be blogging about next week.  In the meantime, I might also publish some ad hoc blogs including some incidents and observations I’ve been storing up from the wall walk – so stay tuned!

Ronny

Follow me on Twitter @ronnyallan1

 

 

 

 

 

Hadrian’s Wall Day 5 – Pass the morphine!

Me Resting!
Me Resting!
The M6!
The M6!

 

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 but some ‘deep heat’ seemed to do the trick during the walk.  However, 1 hour into the walk today, I felt it degrade to the point I was limping badly with still over 10 miles to go.  More deep heat and a couple of paracetamols taken.  A couple of miles later, I was OK and back to normal pace.

Today’s route was mainly on fairly gentle ground all the way to Carlisle and the sun came out for the second half (welcome back Mr S, not seen you since Newcastle).  Didn’t see very much wall but clear evidence of where it was including the ‘Vallum’ or ditch.  Bit more built up than the middle section, so we passed a lot more small groups of houses.  Many of the older ones were built with large redstone blocks – a story for another day.

Final today tomorrow, 15 miles down to Bowness-on-Solway for a pint!  Only 1 though.

Tune in for some pictures of ‘God’s Country’ over the Firth 🙂

Hadrian’s Wall Day 4 – Welcome to Cumbria!

 

 

20140529_145013

 

Lanercost Priory
Lanercost Priory

 

Milecastle 48 - Poltross Burn
Milecastle 48 – Poltross Burn

 

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 sections of original wall and a few interesting spots which are probably worth a revisit to spend more time looking around.  Some photos attached.

However, today has taken its toll on our legs.  Jim said we would all be doing ‘Douglas Bader’ impressions later, he’s not wrong! I’ve developed a right knee problem which made the last 5 miles uncomfortable.  Painkillers might be required tomorrow.  Despite the minor pain, my blisters appear intact but only due to the pads applied yesterday.  Chris has a blister on her left big toe which has its own postcode.

Interestingly we’re staying round the corner from Lanercost Priory where, in 1306-07, King Edward 1st (long shanks) convalesced for 6 months with dysentry.  Mel Gibson would have been happy with this 🙂

We met some interesting and friendly people in our digs tonight including 2 mad Ozzie ladies!   They expressed some interest in my blog so thought I’d give them a mention……. hi Sheila and Sheila 🙂

Tomorrow we head off from the wall down to Carlisle which is mainly flat, probably a good thing given my knee problem.

 

Thanks

Ronny

Follow me on twitter @ronnyallan1

 

 

Hadrian’s Wall Day 3 – Spectacular but wet!

The lone sycamore
Temple of a Roman Sun God (epic fail today)
The lone sycamore
The lone sycamore
Chris & Dave being daft
Chris & Dave being daft

 

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 was absolutely outstanding but the weather was not too good for photography.  For much of this section the wall is routed along a ridge and goes up and down, up and down, up and down (you get the message!).  There were fantastic views both sides of the wall, this section must have been easy to defend, the drop facing north was almost vertical in some places.

Dave Taylor was excellent company today and once we had finished swapping ‘war stories’, we started jointly reciting the words of Life of Brian followed swiftly by The Holy Grail, both Monty Python classics.

Had two interesting phone calls today.  First was from Hope FM in Bournemouth where I did a 10 minute live on air call as a follow-up to my 1 hour session in April.

The second call was a Consultant appointment for one of my routine tests asking if I could make it this morning as a slot had become available at short notice.  I took great delight in letting the secretary know I was on Hadrian’s Wall and wouldn’t therefore be able to attend!

Looking forward to tomorrow’s equally tough walk with Jim Waterson.

Some photos attached, hope they come out OK.

We’ve seen £200 donated in the last 24 hours which is excellent news but our target is still not met.  Please see our donation site at http://uk.virginmoneygiving.com/team/planets7

You can also donate by text.   Enter PLAN84 £10 to 70070, this is free and you can also use gift aid by following the instructions. Smaller amounts are possible, simply replace £10 with £1, £2, £3, £4, £5

Ronny

Twitter @ronnyallan1

 

 

 

 

Hadrian’s Wall Day 2 – The wall appears

 

 

PLANETS on the Wall
PLANETS on the Wall
Wall design change
Wall design change
From wall to house
From wall to house

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 expect rain in the afternoon but it just got sunnier and hotter throughout the day.

We saw some wonderful scenery today but we know the best is yet to come with the hillier day 3 and day 4 legs.  However today we started to pick up signs the Romans had been here with various bits of wall including some which had been relocated and turned into a house (neat trick!).

We walked nearly all day on the ‘Barbarian’ side of the wall and not a blue painted warrior with a Mexican moustache in sight! A bit boggy in places though so our footwear took a pounding (along with our legs). My hips were sore after day 1 but OK today. Chris is OK.

I attached some photos above. One is PLANETS Charity ‘silicone selfie’ on a real piece of the Wall. Another is a side angle of the same piece of wall. This is an interesting stretch as it represents a significant design change where the wall reduces from a 10 foot width to 8 foot and continues as 8 foot to the western most edge.  The old ‘Time, Cost, Quality’ triangle springs to mind!

What a piece of engineering this must have been in those days.

Also attached is a picture of a building mainly constructed from wall stones – an example of the desecration of the Wall before Mr John Clayton (powerful landowner) stopped it realising the historical significance was being destroyed.

We meet up with Dave Taylor tonight and are very grateful to him for finding the time to walk with us on day 3. We will be covering some of the most spectacular scenery including the famous fort at Housesteads.  Change of terrain too, a bit hillier!

S

ee you all tomorrow?

 

Cheers

Ronny

Follow me on twitter – @ronnyallan1

 

Hadrian’s Wall Day 1 – Sunny Newcastle (no fog on the Tyne)

wpid-wp-1401134754538.jpeg

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 ridge to our right indicating we would be climbing at some point and the eventual climb was more severe than I imagined!  However when we got into the village, we had a well deserved drink.  It was here we said goodbye to our friend Nick Naylor who had walked with us all the way.  Nick was a work colleague from 1995-96 and also a close neighbour.  We very much appreciated Nick’s company and it was fantastic of him to give up his bank holiday.  What a nice guy!

We then set off to find our lodgings which was a further 2 (hard) miles down the route which runs parallel with the ‘Military Road’ (B6318).  Had to sniff out the wifi though, only works in certain places.

I think Chris has completed the day in a better condition than me, I’m feeling pretty sore and stiff.  Hopefully I’ll be able to walk off these problems tomorrow.  Looking forward to meeting up with Dave Taylor tomorrow night ready for Day 3.

Hopefully will be able to update you all again tomorrow (depends on good access to wifi!).

Thanks

Ronny & Chris

Is there life on other Planets?

Image

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 is now.

I just googled the manned moon landing to make sure I got the year correct for the blog and sure enough the internet delivered once again. I also got carried away and started researching all the Planets in our Solar System.  Interestingly, one of my searches uncovered the fact that Pluto is no longer considered a proper Planet (nobody told me!).  However, my searches also uncovered that Pluto has been replaced by a young stellar object called Pancreatic, Liver and Neuroendocrine Tumours (PLANETS).

It’s no secret that I’m now closely involved with PLANETS and I can confirm there is definitely life on it!  I’m delighted be part of the team and I really want to help them achieve their goals and mission. I won’t regurgitate the content of previous blogs here but please browse through their website starting from this page which is a good primer:

http://www.planetscharity.org/about-us/

If you want to receive our newsletter, please fill in the short form.  This is for patients, patient supporters or general supporters alike.

Can I also ask you to go to their Facebook page and click on ‘LIKE’                                       https://www.facebook.com/pages/PLANETS-Charity/122088044556397?fref=ts

500 likes by end of play today please 🙂

For those who are Twitter powered, you can follow us here:

Finally, as you know Chris (Princess Fiona) and I (Shrek) are fundraising for PLANETS by walking Hadrian’s Wall starting on 26 May 14.  It would be fantastic if you could contribute to our cause, any amount would be very much appreciated.   http://uk.virginmoneygiving.com/team/PLANETS7

Many thanks for supporting my blog, suggestions for future blogs welcome.  Please share, like, follow, comment.

Ronny

follow me on Twitter @ronnyallan1 or click here:

 

 

Queen Mother of the Isle of Wight

 

2711202380_b47dc973af

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 brought back some memories from Nov 2010.  Neil Pearce had already told me in the pre operative consultations, that an important factor for him was a positive attitude from the patient to help get through difficult major surgery. I remember telling him I was ‘up for it’.  He had also deemed me to be ‘young and fit’.  At 55, I was happy with that!

One of the things that really surprised me about major surgery was the speed at which the physiotherapists attempt to get you out of bed.  Having around 12 tubes protruding from various parts of my body didn’t seem to put them off despite the obvious medical and ergonomic difficulties.   The number of tubes did gradually reduce as certain parts healed and bodily functions resumed. However, each physio session was painful and a lot of effort and willpower was required.  I remember not wanting to play this game around day 4 or 5 due to feeling totally washed out (my words to the physio) and I resisted all attempts to ‘go walkies’.  Neil visited that evening clearly concerned by the physio’s report.  Pep talk complete, he left me with the following words “remember, you’re a winner”.  I was up the next day sprinting round the hospital complete with tubes and glad to be back on the physio’s Christmas card list.

I also had a ‘wobble’ last year (another story for another time), but I’m now beyond that stage with a very positive frame of mind………….and I feel much better for it.  Onwards and upwards.

So why is the title of the blog “Queen Mother of the Isle of Wight” ?  I’m not saying, so please read the article, it might just inspire you too.

https://www.facebook.com/pages/PLANETS-Charity/122088044556397?fref=ts

RIP Gloria Minghella, I dedicate this blog to you.

Ronny

follow me on twitter @ronnyallan1

For an explanation of my blog, please click on the ‘About’ tag at the top of the page.   Thank you.