2014 - Ronny Allan - Living with Neuroendocrine Cancer

30Dec 2014 by Ronny Allan No Comments

2014 in review

General

The WordPress.com people prepared a 2014 annual report for this blog. Here's an excerpt: The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it. Click here to see the complete report. Check out my Facebook site here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723

30Dec 2014 by Ronny Allan 3 Comments

End of the year but not end of the mission

General

[caption id="attachment_2374" align="aligncenter" width="600"] Ronny & Chris Allan - festive sweaters :-)[/caption] Hope you all had a nice festive break? Chris and I had 3 separate dinners making sure we made the most of our extended family base. We decided to join in the Christmas jumper fashion statement which seems to be vogue this year - thus the picture! At least we got to wear them 3 times! Now that busy period is over, I've had the chance to reflect on the last 8 months of blogging and look forward to my plans for 2015. I created this blog site on 29 Apr 2014 mainly to document an 84 mile charity hike across Hadrian's Wall - a World Heritage site in the North of England near the border with Scotland. I was just a 'learner'…

16Dec 2014 by Ronny Allan 8 Comments

Surgery – the gift that keeps on giving

Survivorship, Treatment

As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage. Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'. Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation. I'm still alive and kicking and don't feel too…

12Dec 2014 by Ronny Allan 9 Comments

Chocolate – the NET effect

Diet and Nutrition, Humour

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a large person, I'm small 'framed' and although I was starting…

05Dec 2014 by Ronny Allan No Comments

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…

01Dec 2014 by Ronny Allan 2 Comments

Tobacco and Cancer: A smoking gun?

General

I've never smoked so I'm reasonably confident my own cancer experience is not related to this type of personal lifestyle. I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour. We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK. Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all. Smoking also increases the risk of at least 13 other cancers including the larynx (voice box), oesophagus (gullet), mouth and pharynx (throat), bladder, pancreas, kidney, liver, stomach, bowel, cervix, ovary, nose and sinus, and some types of leukaemia. There is also some evidence…

25Nov 2014 by Ronny Allan 2 Comments

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

General

The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they…

10Nov 2014 by Ronny Allan 2 Comments

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. 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, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world…

10Nov 2014 by Ronny Allan 8 Comments

I woke up on NET Cancer day (…… now World NET Day)

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

[caption id="attachment_10856" align="alignnone" width="300"] Featured this post[/caption] [caption id="attachment_10865" align="alignnone" width="252"] Featured this post[/caption] It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9 hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. I can still remember the feeling today, it was like I was pinned to the bed and I was completely vulnerable and helpless. However, what I mainly remember was my wife Chris holding my hand which gave me a…

03Nov 2014 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! I can now totally understand why so many Neuroendocrine Tumour (NET) patients have become their own advocates and why they have to shout quite loud for recognition and understanding.One of the key facets of NETs is that it is not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary…

27Oct 2014 by Ronny Allan 11 Comments

Neuroendocrine Cancer – shh! Can you hear it? (…..I didn’t)

Awareness, Patient Advocacy

[caption id="attachment_4472" align="aligncenter" width="550"] shh! - can you hear it? I didn't.[/caption] The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole…

20Oct 2014 by Ronny Allan No Comments

Awareness, Awareness, Awareness

General

When Tony Blair swept to power in 1997, he said: "Ask me my three main priorities for government and I tell you education, education, and education". His approach of repeated word emphasis has been copied and recycled by many others replacing the words with something to suit their own message. I'm now guilty of similar plagiarism! NET Cancer is rare and as a consequence has a small community of sufferers and specialists. It does not get the same levels of publicity, funding and research that the bigger patient population and more common cancers receive. It therefore needs 'team work' to send a bigger and more powerful awareness message. Thus why the World NET Community formed in Berlin in March 2010. This is a group of NET cancer patient organisations from countries as…

16Oct 2014 by Ronny Allan 14 Comments

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,…

06Oct 2014 by Ronny Allan No Comments

A Commitment to Fight Cancer

General

[caption id="attachment_1992" align="alignnone" width="640"] Steve Davis and the Author[/caption] I was a spectator at the Bournemouth marathon on Sunday 5 Oct 2014. I was there to shout for my old army friend, Steve Davis, who was running 26.2 miles for PLANETS Charity. When Steve found out I was living with Neuroendocrine Cancer, he immediately volunteered his services to help raise funds. Steve is a runner but when you are '50 something', running a marathon is no easy feat - not easy on your feet either :-) I had seen excerpts of marathons on television but this was my first time as a spectator at a live event. One thing that struck me was the sheer number of people who were running for good causes. The usual big names were there (Cancer…

30Sep 2014 by Ronny Allan 14 Comments

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…

24Sep 2014 by Ronny Allan 6 Comments

Passive patient or active advocate?

General

Sorry to have been quiet for a while but I've been so busy with house, family and cancer campaigning activities. Additionally, I've been continuing my research into Neuroendocrine Cancer. Why do I do this? Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health. I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). [caption id="attachment_1938" align="aligncenter" width="500"] Passive vs Activated Patient[/caption] I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this simply isn't…

06Sep 2014 by Ronny Allan No Comments

No flushes please!

General

[caption id="attachment_1893" align="alignnone" width="640"] No flushes please![/caption] Despite people's expectations, diagnosing Cancer isn't a two minute job. There is a whole host of stuff to consider and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out at this link here: http://wp.me/p4AplF-c Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cyto reductive (tumour debulking) rather than curative. I did have a 3 day Octreotide Scan…

03Sep 2014 by Ronny Allan 3 Comments

Childhood Neuroendocrine Cancer – 1 in 7 million!

General

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

26Aug 2014 by Ronny Allan 3 Comments

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…

19Aug 2014 by Ronny Allan No Comments

Met an old friend today; his name is Gym

General

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

17Aug 2014 by Ronny Allan 2 Comments

Am I at fighting weight?

General

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

14Aug 2014 by Ronny Allan 16 Comments

Glass half full or half empty?

Inspiration, Living with Neuroendocrine Cancer

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

03Aug 2014 by Ronny Allan 3 Comments

“You’re from Dundee – you must like fighting”

General

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

28Jul 2014 by Ronny Allan 3 Comments

Four years on

General

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

20Jul 2014 by Ronny Allan 1 Comment

Laughter is the best medicine

Humour

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

12Jul 2014 by Ronny Allan 1 Comment

Finding Hotspots

General

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

25Jun 2014 by Ronny Allan No Comments

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…

22Jun 2014 by Ronny Allan No Comments

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…

19Jun 2014 by Ronny Allan 4 Comments

Up and atom!!

General

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

18Jun 2014 by Ronny Allan No Comments

Forget the posturing, it’s results that matter

General

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

16Jun 2014 by Ronny Allan 2 Comments

I’ve just been nuked!

General

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

12Jun 2014 by Ronny Allan No Comments

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…

09Jun 2014 by Ronny Allan 2 Comments

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…

03Jun 2014 by Ronny Allan 2 Comments

So what next?

General

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

31May 2014 by Ronny Allan 4 Comments

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…

30May 2014 by Ronny Allan 2 Comments

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy

[caption id="attachment_1087" align="aligncenter" width="640"] Me Resting![/caption] [caption id="attachment_1088" align="aligncenter" width="480"] The M6![/caption] When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA - Patient Controlled Analgesia. Basically I could click a button whenever I felt the post surgical pain was too much. As this administered morphine, safeguards were built in - for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn't accept a request for another 5 minutes. That handheld push button device was never far away from my hands! I could have done with it today. Yesterday I felt…

29May 2014 by Ronny Allan 2 Comments

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy

[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 and rolling fields as we entered Cumbria. There were some marvellous…

28May 2014 by Ronny Allan 5 Comments

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy

[caption id="attachment_976" align="aligncenter" width="480"] Temple of a Roman Sun God (epic fail today)[/caption] [caption id="attachment_977" align="aligncenter" width="480"] The lone sycamore - famous for being in a Robin Hood film[/caption] [caption id="attachment_978" align="aligncenter" width="480"] Chris & Dave being daft[/caption] Chris and I adopted the famous military 'buddy buddy' system this morning by checking each other's feet and applying blister pads. We then set off on a hilly section with some spectacular scenery. But first we collected our friend Dave Taylor who was walking this tough section with us. The forecast rain didn't arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers. Pretty rough underfoot with plenty mud and damp grass. Stonework was in some places dangerously slippy.…

27May 2014 by Ronny Allan 4 Comments

Hadrian’s Wall Day 2 – The wall appears

Patient Advocacy

[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 a blister between us! When we set off from our farmhouse (Ironsign), it was overcast…

26May 2014 by Ronny Allan No Comments

Hadrian’s Wall Day 1 – Sunny Newcastle

Inspiration

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…

24May 2014 by Ronny Allan 6 Comments

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was nearly 8 years ago but I have a lot of people to thank for some excellent progress. My son & daughter's families have all been there for me and although my 4 grandsons don't quite understand the situation, their presence in my life is a…

23May 2014 by Ronny Allan 1 Comment

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…

22May 2014 by Ronny Allan 1 Comment

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…

20May 2014 by Ronny Allan 1 Comment

Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment

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

19May 2014 by Ronny Allan 1 Comment

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…

18May 2014 by Ronny Allan 1 Comment

“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…

17May 2014 by Ronny Allan 1 Comment

Dr Google will see you now

Awareness, 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 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 patient 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 how…

16May 2014 by Ronny Allan 1 Comment

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…

15May 2014 by Ronny Allan 2 Comments

Shrek and Princess Fiona

Humour, Inspiration, Survivorship

[caption id="attachment_480" align="aligncenter" width="640"] Shrek and Princess Fiona[/caption] I was looking through some old photographs and came across this one I thought you guys might like. It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris was in fact not very well at the time. This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (a mad ex paratrooper) and his lovely wife Babs. Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been…

14May 2014 by Ronny Allan 4 Comments

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…

13May 2014 by Ronny Allan 3 Comments

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…

12May 2014 by Ronny Allan 10 Comments

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

Inspiration

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

11May 2014 by Ronny Allan 4 Comments

My treatment is a pain in the butt!

Living with Neuroendocrine Cancer, Treatment

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

10May 2014 by Ronny Allan 2 Comments

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…

09May 2014 by Ronny Allan 1 Comment

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…

08May 2014 by Ronny Allan 3 Comments

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…

07May 2014 by Ronny Allan 1 Comment

Who needs a gallblader anyway?

Patient Advocacy

There's a few 'G' items to talk about so here goes...... Gallbladder There wasn't really anything wrong with my gallbladder but it had to go. You may have read previously that I receive a monthly injection of a 'snazzy' drug which keeps me well. However, long term use of this drug has certain side effects, one being the risk of gallstone formation in up to 50% of cases. Gallstones can not only be very painful but they can potentially be life threatening. On top of what I had already endured, future surgery to treat gallstones or to remove my gallbladder could be riskier than it might normally have been, so it was conveniently removed during a second major operation on my liver (the gallbladder is located very close). The…

06May 2014 by Ronny Allan 1 Comment

Does my Flush beat yours?

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…

05May 2014 by Ronny Allan 2 Comments

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…

04May 2014 by Ronny Allan 14 Comments

Diagnosis – I’m no longer in control

Awareness, Survivorship

[caption id="attachment_10806" align="alignnone" width="777"] back in control?[/caption] 'Diagnosis'. The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests and now referred to an Oncologist. Rewind 2 months to May 2010...... I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I'm happy as a pig in the proverbial! My annual Asthma clinic comes along and it's an opportunity to work at home for the day....yahoo - no commuting! "Hi Ronny" - "Hi Liz". Blah Blah Blah. However, glad Liz was taking it seriously - I just wanted to get back to my laptop,…

03May 2014 by Ronny Allan 2 Comments

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…

02May 2014 by Ronny Allan 3 Comments

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…

01May 2014 by Ronny Allan No Comments

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.…

30Apr 2014 by Ronny Allan 4 Comments

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…

29Apr 2014 by Ronny Allan 4 Comments

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…