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

 

 

 

Living with Cancer – Turning points

turning-points.jpg
Day 4 of 6 – entering Cumbria from Northumbria

In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of ‘Hadrian’s Wall’ in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.  

A few months before this trek, I had come to a crossroads and I was unsure which direction to go.  That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability.

I was getting into some old habits at work (e.g. working long hours) and in hindsight, I can now see that was impacting on my search for normality and stability. However, at the time, it conveniently aided the image of invincibility which was my way of saying “get lost Cancer”. I was reaching out for something I could call normal and for a long time before diagnosis, me working hard was normal!  I had always loved a bit of stress but not if it was going to help Neuroendocrine Cancer kill me!

And then boom! – a thyroid lesion is reported.  I suddenly realised I had too many balls in the air and I  was no longer the expert juggler I was previously. The mask on my poker face was slipping and something needed to change. The thyroid lesion (more on that later) was not the turning point but it was definitely one of a number of signs that I was not invincible, my situation was delicate and I needed to be more proactive on finding the normal I was so desperately seeking.  Work was no longer the route I needed to take.  To cut a long story short, I decided to retire early BUT in an effort to maintain personal challenges, I set myself some fitness targets which lead to the Hadrian’s Wall walk over 6 days. I actually set up this blog site simply to document the walk and that was the only reason at the time.

Four years on, Lanreotide injection 100 is coming up shortly, my thyroid lesion is not causing any issues although I have recently been prescribed medication to support my borderline hypothyroidism, I have much less stress in my life and I’m fitter and leaner than I was at diagnosis. I found a new normal and I liked it! Maintaining and improving it is a challenge though.

My Hadrian’s Wall blog was an acorn which has now grown into a nice little Oak tree and I’m truly thankful to everyone for their fantastic support. There’s still plenty tree left to grow

In November 2018, the blog passed three quarter of a million views and I’m on track for the magic one million in summer 2019.

I CAN DO IT! 

I can do it v2

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

 

Please flush after use!

I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer. “Please flush after use” – erm…yes sure but actually – no thanks

please-flush-after-use-350x225-polyIn the past couple of years, I’ve read so many stories about the quite natural act of using a toilet (…..some more repeatable than others).  I think if there was a ‘Bachelor of Science degree in Toiletry’, I might pass with First Class Honours.

I jest clearly but it’s strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses.

I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  “Please flush after use” – erm…yes sure but actually – no thanks 🙂

You're kidding me!
You’re kidding me!

When I read about some of the issues others deal with, I think I’m one of the luckier Neuroendocrine Cancer patients regarding these type of issues. I’m in reasonable condition considering the extent of my disease and my subsequent treatment.  I put up with a number of irritants but I don’t seem to suffer as much as some appear to do. That said, I think I sometimes downplay my own issues though, I’m well known for ‘not frightening the horses’.

One thing that does worry me is the occasional stomach cramp. Hopefully, I’m not tempting fate as they seem to be vastly reduced in the past 3 years. They can sometimes be very painful and debilitating – normally resolved by going to the toilet (and hopefully one is close!). Handy if I’m in the house, not so handy if I’m on a plane, in town or anywhere where toilets are not in abundance. I did write a blog on this subject following a very painful episode on my Hadrian’s Wall 6 day adventure – My stomach cramps my style’

As I’ve had intestinal surgery, Bowel obstructions are a potential worry. To date, pain and sluggishness have always been just a bout of constipation.  Read my article here.  You can carry a card for the bowel obstruction risk courtesy of NET Patient Foundation – these guys have a card for most stuff.

test npf

I don’t suffer from ‘carcinoid syndrome induced diarrhea’ but long flights are one of the few times I take Loperamide (Imodium).  For long drives and trips to town, I’m simply reliant on toilet availability. Normally, I just wander into hotels and restaurants and help myself. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to get a key – again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet!  If sufficiently urgent, I’m even prepared to ask to use the staff toilets in shops etc. I do have a card in my wallet, which again, I obtained from my friends in the NET Patient Foundation.  I’ve not yet had to use it in anger. I also noticed that Macmillan are now doing something similar.

NPF Toilet Card Back

 

On the subject of urgent visits to the toilet.  I recently wrote a blog about a lady with inflammatory bowel disease (IBD) and I suspect in a worse condition than most Neuroendocrine Cancer patients.  She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent and it apparently went viral.  Just goes to show that with invisible illnesses Things are not always how they seem.  The letter is brilliant.

9540384-large

For those who are interested, NET Patient Foundation also do a Carcinoid Crisis at risk emergency card to keep in your wallet/purse so that doctors can be forewarned of the aversion to anaesthetics etc. Mine is in my wallet at all times just in case.

CARCINOID CRISIS NPF 2018 (2)

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

 

Exercise is Medicine

 

cropped-20140504_090836.jpgI suspect we all know exercise is good for us but it does sometimes take quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).  I did write about this in 2014 (Exercise – it’s a free prescription).  In fact, my blog  was actually created to document my return to fitness and good health 12 months ago!

I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy ‘single letter’ lists called the “5 E’s” of things to avoid – one of which is ‘Exercise’.  Clearly ‘Exercise’ needs putting into some context as everybody needs to do some even if it’s only a walk to the shops or some gardening.

There is a lot to be said for cancer patients to do some form of exercise and I know from my own experience, and from some really good on-line evidence, that it does have excellent medicinal value. For example, it can keep your weight in check, makes you stronger and keeps you feeling youthful (mind over matter is also a good thing!). Can exercise can make you a happier person? I think so. Last year, my wife and I committed to an 84 mile trek along Hadrian’s Wall in North England and we spent 3-4 months preparing. I was very thankful to her for continuously dragging my butt out of bed and into the forest close-by.  During this period, we both felt less stressed out, less anxious, we slept better and we were generally happier.  I suspect there is some scientific evidence about why this happens i.e. exercise releases ‘happy chemicals’ into/interacting with your brain, mostly ‘Dopamine’ and ‘Endorphins’.

In my own case, I’m currently non-syndromic since major surgery and monthly injections of Lanreotide. I therefore suspect the risk of exercise causing me problems is pretty low. In any event, I’m unlikely to indulge in anything really strenuous!   I also know many NET patients who exercise frequently.   However, I know from reading on-line forums that many people suffer from varying degrees of carcinoid syndrome and I suspect the advice is directed to those who may be more at risk. That said, I still believe most people would benefit from some exercise and this is something their doctors might advise on.

Exercise safely people.  I’m off for a long walk 🙂

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

Things are not always how they seem

9540384-large
Things are not always how they seem

In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border.  It was a fantastic experience and we met some really interesting people on our 6 day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was therefore relieved I hadn’t responded to her initial rudeness. However, It got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what’s going on inside their heads and bodies.

Visible Illness can have awareness benefits

Conversely in 2018, I was absolutely humbled when I met a Parkinson’s disease patient. I had ‘noticed’ Matt prior to meeting him, mainly because he had difficulty walking. When he was talking to me I had to really concentrate because his head, arms and legs were constantly going into spasm. His speech was also affected. Despite his very clear VISIBLE illness, I can say he is a fantastic advocate for Parkinson’s. He told us that he has no issues with people staring or looking at him as he makes his way around and that is his key marketing point – himself. He uses the fact that people notice/look/stare as opportunities to get talking to them and he is a living breathing advert for Parkinson’s. I had no idea Parkinson’s had these effects, I thought it was just the shaking hand thing that you often see on TV programmes.

So things are sometimes not what they seem with VISIBLE illnesses just as they are with INVISIBLE.

NETs can be invisible before and after diagnosis

I know from reading and participating in Neuroendocrine Cancer (NETs) forums that many patients with my own condition frequently encounter people who clearly do not understand much about the effects of NETs on someone’s body (and mind) and day-to-day living which for many can be described as a struggle.  I read one story about a lady who was accused by a co-worker of faking her cancer because she looked so well! How many of my NET patient readers have been told they look really well?  This is something frequently said to me and I now respond with the customary “Yes, but you should see my insides“.

Not many NET patients are subjected to the rigours of chemotherapy and I for one am thankful for that. However, many NET patients have had some ‘bad ass’ surgeries and will be treated for the remainder of their life with (at least) large anti tumour and hormone inhibiting injections and perhaps other side effect inducing drugs.  There is no 5 year or indeed any remission for many NET patients.  What is incurable has to be endured!  Moreover, they will be tested at regular intervals to ensure remnant tumours are ‘at bay’ and that no new ones have appeared. So the potential for a new or re-diagnosis is there at every single meeting with their specialist.  All of that comes with a price in terms of quality of life.

I’m not trying to compete with other cancers or chronic illnesses, I’m just saying that a NET patient who looks well, may not be well inside – body and mind!  Nor am I asking for pity – I am, however, asking for understanding.

toilet-sign-wall-of-china
Seriously!

When I read about some of the issues others deal with, I suspect I’m one of the luckier patients. I’m in reasonable condition and put up with a number of minor irritants which I suspect are due to the consequences of my cancer treatment rather than from Carcinoid Syndrome.  However, one thing that does scare me from time to time is stomach cramps. Hopefully I’m not tempting fate as they seem to be reduced this year.  However, when I suffer these, it does worry me, not just because they can sometimes be very painful and debilitating, but I know that I must go to the toilet ASAP. Handy if I’m in the house, not so handy if I’m on a plane, down town or anywhere where toilets are not in abundance.

NPF Toilet Card Back
NET Patient Foundation Card – on the back

I try not to let this problem stop me leading as normal a lifestyle as possible and as I said previously, it doesn’t really happen that frequently.  Long flights are one of the few times I take Loperamide (Imodium) and for long drives and trips down town, I’m simply reliant on toilet availability. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to go get a key and again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet.  If necessary (sufficiently urgent), I’ll even ask to use the staff toilets in shops etc.  I do have a card in my wallet which I obtained from my friends in the NET Patient Foundation but I’ve not yet had to use it ‘in anger’.

Are you nodding your head at these issues?   I also suspect quite a few of you will therefore enjoy reading an article which has given me the inspiration and motivation to update this blog post.  It’s about a lady who has major abdominal issues through surgery and illness (inflammatory bowel disease (IBD)) and to me this sounds like a worse condition than many NET patients endure.  She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent, well written and apparently it went viral. What great publicity that must have been for IBD.

Read the post here, it’s brilliant:  CLICK HERE TO READ
 (p.s. ‘Loo’ is British slang for toilet)

Thanks for reading

You may also enjoy these similarly related articles:

Shame on you! – click here

I look well but you should see my insides – click here

Not every illness is visible – click here

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

wego-blog-2018-winner


patients included

Please Share this post

 

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

mindmatter1

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 professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;

Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.

It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer.  I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.

It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult.  According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here.  And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.

Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic).  If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission?  The latter is indeed very good news and will have impacted the survival figures greatly.

However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL).  These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment.  One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer or ‘cancer in slow motion‘ in respect the well differentiated versions.  In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment.  But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues.  Many people not only live with Cancer but they also live with the consequences of Cancer.

As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂  I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearful and blame every single ache and pain on my cancer (because most of the time it turns out not to be) –  this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial.  One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer.  NET Cancer needs an element of pragmatism now and then!  I also think exercise and nutrition can help body and mind – thus why I listed those factors above.

Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.

I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.

If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor.  In fact, you may appreciate this excellent video from NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.

I also liked this video by Dr Michael Burke, a Psychiatric Oncologist – click here

You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.

8 tips for conquering fear

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – click here and ‘Like’

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!

Please Share this post

 

 

A Highland Coup

Scotland 09 069
Highland Coos

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 at a farmhouse near Heddon on the Wall.  I was astonished to find they had several Highland Coos. Thinking this discovery was ‘bloggable’, I asked if I could get myself photographed next to them but the owner was clearly not up for this stunt!

Chris and I were chatting to the landlady after breakfast and she explained their business strategy was to provide a ‘field to plate’ experience for their guests.  Having quickly thought about what I’d eaten, I was relieved to remember that I hadn’t eaten any beef. I’ve eaten a few steaks in Scotland but that was always without being introduced to the donating animal. In any case, Highland Coos are for looking at, not eating…..and their milk is used to make Highland Toffee 🙂  The landlady then recounted her first culling experience with the first 3 lambs she owned – called Maisy, Daisy and Lazy. She said it was a pretty tough thing to do having got to know them.  Chris and I suddenly remembered we had lamb for dinner the night before 🙁

The ‘Field to Plate’ strategy got me thinking that it would be good if Neuroendocrine Cancer patients were able to go to one place for all their requirements.  I see an Oncologist in Bournemouth, I’ve had surgery in Southampton, I recently had a scan in Poole and I have my monthly Lanreotide injections done somewhere else!  I suspect the rarity of this disease combined with the wide distribution of sufferers means most people will have to travel for some aspects of their treatment. Add to that the specialised nature of the treatments and the specialised medical staff, then it’s probably not possible except perhaps in Centres of Excellence and well developed and resourced NET Clinics.   In the UK, there are a few and the list is here:   http://www.netpatientfoundation.org/net-clinics-research/  (I cannot guarantee the accuracy of this list).  The Carcinoid Cancer Foundation also has a useful list here:   http://www.carcinoid.org/patient/treatment/find-a-doctor  (again I cannot guarantee the accuracy of this list but I can already see that Southampton UK expertise is not listed).

Another grouping that should interest Neuroendocrine Cancer patients is a Multi-Disciplinary team (MDT).  This team is a group of doctors and other health professionals with expertise in a specific cancer, who together discuss and manage an individual patient’s care. They plan the treatment that’s best for you.  The team normally includes (but is not limited to), an Oncologist, Surgeon, Radiologist (plus Interventional types if necessary), Pathologist and a Clinical Nurse Specialist.  If you are not being looked after by an MDT, you should ask why not!

Almost forgot ‘the Highland Coup’ bit.  For those reading between the lines, this had nothing to do with Alex Salmond and the Scottish Independence referendum…… 🙂   My late father always made my brothers and I laugh when he was reading the newspaper.  He had a habit of reading it out loud which was handy as we got a summary of the news headlines – or so we thought!  He would occasionally make it up, although some of it was obviously a wind up…..e.g. “hen overturns double-decker bus in High Street”.  However, he sometimes did not pronounce certain words correctly and when my brothers and sisters reminisce about him today, one of us will always repeat his most famous and amusing headline quote – “There’s been another ‘cowp‘ in Africa”.

Ronny

 

follow me here: https://twitter.com/RonnyAllan1

 

As a reminder, you can view the blogs for Days 1 to 6 of our walk as follows:

Day 1 – Wallsend to Heddon-on-the-Wall http://wp.me/p4AplF-ew

Day 2 – Heddon-on-the-Wall to Chollerford http://wp.me/p4AplF-eN

Day 3 – Chollerford to Steel Rigg http://wp.me/p4AplF-fI

Day 4 – Steel Rigg to Lanercost http://wp.me/p4AplF-fS

Day 5 – Lanercost to Carlisle http://wp.me/p4AplF-gK

Day 6 – Carlisle to Bowness-on-Solway http://wp.me/p4AplF-hT

 

 

 

 

 

 

Things are not always how they seem

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 Irish people. He also spoke pretty fast but fortunately Dave and I had been trained to receive morse code at 1000 words per minute and were able to handle it 🙂  He also let us know the Queen had visited Dublin 60 years too late and that “people seemed to have grown up”. He also waxed lyrical about his house on the West coast of Ireland claiming that he would be able to see New York if it wasn’t for the earth’s curvature.  Again that got Dave and I thinking as we had both been trained to work out line of sight radio paths taking the earth’s curvature into account 🙂 Can’t remember why but we got onto the subject of Holland and he then claimed that most Dutch companies were run by Irishmen!  It was difficult but we managed to extricate ourselves after 15 minutes of this slightly strange one way conversation.  This was roughly in the centre of the walk and we both predicted he would have a broken nose by Newcastle.

On the evening of the next day, Chris and I met two ladies in our lodgings and I couldn’t help noticing one of them appeared to be a bit abrupt. This continued during the evening meal where I was a bit taken aback to be told by someone I had only met 10 minutes earlier, that I must be stupid because I mentioned that I get someone to proof read my blogs before publishing.  I’m a lot mellower nowadays but I do know one or two people who (shall we say) would not have been anywhere near as calm as I was about this situation.  I found out later this lady was autistic and we then went on to have a really nice chat and meal.  I’m so glad I didn’t react in a different way and have since taken the time to find out about something I don’t understand – this site is helpful if you are similarly inclined: http://www.autism.org.uk/   Thus my message title – ‘Things are not always how they seem’.

You could make the same mistake about other illnesses where things are sometimes not quite how they seem.  For a time I was curious as to why Neuroendocrine Cancer is associated with the Zebra. It took a while for me to get the connection.  Apparently, Medical staff are trained using the saying ‘if you hear hoofbeats, think horse’ and a ‘Zebra’ is medical slang for arriving at an ‘exotic’ medical diagnosis when a more commonplace explanation is more likely.  I get this but surely the exotic stuff should be discounted rather than forgotten about?

Neuroendocrine cancer is rare and some of its symptoms can mimic ‘run of the mill’ problems that a lot of people face from time to time.  It can be diagnosed by accident during invasive procedures for something more common (e.g. appendicitis – you may remember me saying this was a common site for primary neuroendocrine tumours) – these discoveries would be a surprise if the person was asymptomatic (as is often the case with this cancer). It can also be found during diagnosis of some other illness where cancer isn’t initially suspected, for example exposed via a scan – and even then it may not lead to diagnosis of the correct cancer until further downstream.  This scenario might even be the end of a long chain of vague problems – perhaps over years. Neuroendocrine Cancer forum and patient support sites are jam-packed with stories of years of misdiagnosis.  I blogged a couple of times about this here: http://wp.me/p4AplF-7h and: http://wp.me/p4AplF-b7

When I look at my own experience, I would appear to be somewhere in the middle and the way in which my cancer was eventually diagnosed leads me to think I had a bit of luck  – but following a period of ignorance on my part (AKA lack of awareness and feeling of invincibility).  If you remember, I nonchalantly told my asthma nurse I had lost a ‘wee bit of weight’.  That could have gone two ways ………… fortunately she sent me for a blood test and here I am now 🙂  If you want to read or hear more about my cancer diagnosis experience, check this blog: http://wp.me/p4AplF-1W

Ronny

follow me on twitter here: https://twitter.com/RonnyAllan1

My stomach sometimes cramps my style

toilet-sign-wall-of-china
Seriously!

When planning to walk Hadrian’s Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true ‘Donald Rumsfeld style’, I considered all the ‘known unknowns’ and the ‘unknown unknowns’ 🙂  Anybody who doesn’t is either reckless or supremely confident (the latter can sometimes be the same as the former……).

As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain.  One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur.  If you’ve had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET) patients also suffer these cramps, often due to something called ‘Carcinoid Syndrome’ or simply as a side effect of treatment.  This syndrome has symptoms including (amongst others):

  • Flushing
  • Abdominal pain
  • Diarrhoea
  • Loss of appetite
  • Wheezing
  • Fast heart rate
  • Dizziness due to blood pressure that may go up or down – this can be triggered by having an anaesthetic.

For me, it was mainly the flushing – in fact this was instrumental in confirming my diagnosis. However, in hindsight some other issues might have been masked by routine/’run of the mill’ illnesses a couple of years prior to being diagnosed with Cancer.

I’m not particularly ‘syndromic’ at the moment due to my monthly treatment and debulking surgery.  However, I do occasionally have to deal with ‘stomach cramps’ (a term which tends to mean the whole abdominal area). Fortunately, they are not that frequent.  I might not have a stomach cramp for weeks and then suffer a couple of times in a single week.  Consequently, after each attack, I study my activities, my medicine and my diet trying to figure out if there is anything I can avoid to prevent this happening.  I now maintain a daily diary to assist.  Footnote from 2018, I don’t seem to have them as regular as I used to. 

I think most people will have experienced stomach cramps at some point in their lives and those who have will agree it’s not nice. I’ve had some really painful episodes in the last 2 years and as is usually the case, it’s helped by visiting the toilet/bathroom. Getting there can be painful as I sometimes find any movement exacerbates the pain with the worst attacks.

You can now see why I listed this as a key risk in walking the 84 miles of Hadrian’s Wall! You might be excused for thinking there shouldn’t be a problem with all that countryside available? Add the openness of the area; add the constant stream of walkers in both directions and the sum = not much privacy!  As an ex-soldier and a male, I’m used to using ‘natural’ toilets or at best temporary structures.  I ‘googled’ to check the availability of toilets along Hadrian’s Wall to find they are few and far between.

I do have a special card which I keep in my wallet but it’s not much use out in the hills! I’ve actually never had to use this card ‘in anger’ but I came very close to using it on Day 5 of this 6 day walk.  I was suffering quite a lot of pain for a good mile or so on the outskirts of Carlisle which was semi-urban. I walked past a dozen houses but my pride would not let me use the card – silly boy!  There was no way I was going to do a ‘Paula Radcliffe’. Things were coming to a head as we approached a bridge with a small copse over a tributary of the River Eden.  At last some cover!

NPF Toilet Card Back

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

wego-blog-2018-winner

 

 

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 6 – Mission Complete!

 

Sunset over the Solway Firth
Sunset over the Solway Firth (Scotland in the distance)

The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway.  We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun – see picture above which was taken from our room.  It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born.

Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it’s flat but the first half is a wonderful mix of colour and open greenery much of it along the River Eden.  The second half was interesting as there’s quite a lot of history (Scotland vs England battles past) and of course the excitement of finishing the walk.  There’s a 3 mile straight stretch of military road when the Solway Firth initially comes into view. As you can actually see the road disappearing into the horizon, it’s mentally punishing.  Moreover, whilst it seems like the walk is coming to an end at this point, there’s still 90 minutes of solid walking ahead.  There isn’t much actual wall on display but there is strong evidence of its location, particularly on the 3 mile section of straight road.

My feet have survived today but my knee only lasted 1 hour this morning before painkillers were required. Chris suffered with her toe blister which is now the size of Africa.

We went straight to the ‘only pub in the village’ where we had a celebratory ‘pint’.  Now relaxing in our room looking at Scotland (see lead picture).

Capture

We enjoyed Hadrian’s Wall but will be glad to be home again after 6 days!  We collected £4000 for Planets Cancer Charity but this challenge was so much more than that – it was one of a number of Turning Points in my quest for a decent quality of life and a positive outlook for the future while living with and beyond cancer.  It also created my blog site which is still here today!

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

 

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

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

Cold and about to be wet!
Cold and about to be wet!

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 back packs contain the ‘full monty’ of wet weather clothing – so we’re prepared for all eventualities.

It did bring back some memories for me though as in a past life, I’ve had to do quite a bit of activity in the pouring rain!  In fact daft as it seems, there is lot to say about military phrases such as ‘If it isn’t raining, then it isn’t training’.  If it rains each day during our walk, it won’t seem so bad if we had encountered this during our training.  Ditto with heat I suppose!  Do I have a preference?  If you push me, I’ll go for heat!

On the subject of military training, I just had lunch with 2 very old friends who were on a long specialist training course with me in 1983/84.  We had a really good laugh – some of it at our own expense.  We chatted through some famous (and infamous) incidents which mostly occurred during training.  We decided life is too short and will be meeting up again and trying to widen the attendance to others.

————————————————————————————————————

Geekie Words

I’ve had good feedback from people saying they do enjoy reading this section of the blog as I try to make it as simple as possible to understand. However, don’t forget, these are my own views and/or my own interpretation of Geekie stuff. See my home page for an amplification of this (click on Home at the top of the blog).

Tumour

An abnormal mass of tissue that results when the growth of cells exceeds, and is uncoordinated with, that of normal tissues around it.  Tumours can be benign (not cancerous) or malignant (cancerous).  Tumours are also sometimes known as ‘neoplasms’.  If you wanted to know more about how malignant cancer develops, I found the Cancer Research UK site quite good as it includes short videos, see here:  http://www.cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/  This really is the ‘geekiest’ of subjects!

Trans-Arterial Chemo Embolisation (TACE)

I blogged about Embolisation here: http://wp.me/p4AplF-2e. TACE is a type of embolisation where they add chemotherapy to the mix.  In doing so, it provides a targeted and additional punch in the nose to liver tumours.  I was scheduled to receive one of these but it had to be curtailed as some post surgical changes were interfering with the normal routes to the liver and it was aborted due to the risk.  The possibility of further embolisations has not been discounted but the operation would be trickier.  This isn’t on the horizon so I guess my remnant liver tumours are behaving 🙂

Tenerife

Chris and I must like it there as we’ve been about 4 times and we’re going back this year!   I always feel much better out there and I sometimes even have a beer – rock and roll 🙂

See you tomorrow

Feedback and/or comments very welcome.

 

Ronny

Follow me on Twitter @ronnyallan1   https://twitter.com/RonnyAllan1

 

 

North of the wall is a dangerous place – you must never go there!

 Game-of-Thrones-Poster-North-of-The-Wall

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 the theme of today’s blog following some interesting banter on my Facebook page.  The debate centred on the type of causal clothing one should wear if one is of a certain age. Most of the debaters were ex-military which made for some interesting input followed by even more interesting output!   Anyway…. having recently reduced from a 32″ to a 30″ waist, I made the trip down town today to buy some new jeans and came back with nothing, the ones I really liked seemed to either start at 32″ waist or did not include a short leg option.

However, Chris and I did manage to pick up two suitcase  bargains in the Debenhams sale.  For the last 6 holidays we have been enviously watching all those flash people with their ‘push along’ suitcases whilst we huff and puff behind them with our 1980s luggage.   ‘Roll on’ Gatwick next month!   

I’ve skipped a couple of days worth of A to Z terms so need to catch up.  Read on as I know from feedback that quite a lot of you guys enjoy my ‘layperson’ explanations of complex medical stuff!  Two important ‘techy’ bits here to cover the ‘M’ and ‘N’ components of my A to Z.

Metastatic Cancer

In a nutshell, Metastatic cancer is a cancer that has spread from the part of the body where it started (the primary site) to other parts of the body. When cancer cells break away from a tumour, they can travel to other areas of the body through the bloodstream or the lymph system.  The spread of a cancer is often described in terms of a ‘stage’.  This shouldn’t be confused with ‘grade’ which is normally how aggressive a cancer is – I talked about this in my blog of 11 May.  Staging and Grading for Neuroendocrine Cancer can be complex and there doesn’t appear to be a standard that all NET centres adhere to. There is a complex grading system proposed for Neuroendocrine Cancer known as TNM (Tumour, Node, Metastasis) but mostly it’s still referenced by the simple Stage 0 to IV (0 to 4) model.  For some types of Neuroendocrine Cancer there appears to be an even simpler model of ‘Local’, ‘Regional’ and ‘Metastatic’.   My stage is ‘Metastatic’, Stage IV or TNM – T4N2M1 depending on which one is being used.

Neuorendocrine

Appears to be pronounced ‘….crin’ which was a revelation for me after 12 months!   I had never heard of this word until it had been imprinted all over my internal workings!  It’s amazing how much of the human body we take for granted.  The neuroendocrine system is made up of the nervous system and the endocrine system. The systems work together to keep your body functioning regularly. Neuroendocrine describes certain cells that release hormones into the blood in response to stimulation of the nervous system; i.e.

  • Your brain sends signals to your nervous system that control various body functions 
  • Some messages are sent to the glands of the endocrine system. These include the pancreas, hypothalamus, thyroid and parathyroid, pituitary gland, adrenal glands, ovaries, and testes.
  • These glands release hormones that control important body functions, such as growth, metabolism, reproduction, and response to stress or injury.

Sometimes neuroendocrine cells can become cancerous and in certain types (mainly Carcinoid), it can result in the neuroendocrine system secreting excess hormones which will create dangerous problems for sufferers.   This is one of the reasons I now avoid alcohol, very large meals, certain types of food and stress…….. so if you’re out for a meal with me and you notice the bill is exorbitant, don’t let me see it 🙂

I went on to produce a blog explaining the word ‘Neuroendocrine’ to  laypersons – you can read this here:  CLICK

Don’t forget to check out the GOT chart below!

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

 

Game-of-Thrones-Infographic-Full-Screen

What have the Romans ever done for us?

what have the Romans ever done for us?

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 – we made £4,000).

Hormones

Hormones are your body’s chemical messengers. They travel in your bloodstream to tissues or organs. They work slowly, over time, and affect many different routine day to day bodily processes.   Hormones are powerful. It takes only a tiny amount to cause big changes in cells or even your whole body. That is why too much or too little of a certain hormone can be serious.  

Those who read previous blogs will have seen the unusual nature of Neuroendocrine Cancer. Neuroendocrine cells are specialised cells throughout the body that release hormones into the blood when they are stimulated by nerves.  Neuroendocrine tumours release excess amounts of hormones which can not only create imbalances in the body’s normal function but they can also go on to cause significant damage.  See ‘Does my flush beats yours’   http://wp.me/p4AplF-2w

Ileum

This is one of a few common sites for a primary Neuroendocrine Tumour and where mine was found.  The primary tumour was initially described as a ‘mass’ due to a combination of its size, its encroachment into surrounding tissue and organs/lymph nodes and no doubt some fibrosis thrown in for good measure.  This was removed with surgical procedures called a ‘right hemicolectomy’ and a ‘mesenteric root dissection’, followed by a ‘superior mesenteric vein reconstruction’ (the disease was blocking this vein).  Thank you Mr Neil Pearce.

—————————————————————————————————————————

Tune in tomorrow for some more updates.  If you like this blog, please let me know by doing one or more of the following:

like it within the blog page,

comment on the blog,

like the Facebook page if that is your route into it,

favourite or retweet my twitter post if that is the source – my twitter ID is @ronnyallan1

follow the blog – you’ll receive an email each time I publish updates,

Thanks for your support

Ronny

p.s. all views here are my own and not intended as medical advice.

p.p.s  for those who remember or have not viewed the ‘what have the Romans ever done for us’ scene in Life of Brian – here’s a preview.    

 

 

From Blagging to Blogging

84 mile walk along a 2000 year old structure

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 with any interesting stories arising from the training and preparation for the walk itself.  During the period of the walk, the daily blogs will focus on progress along the route.  I hope to include pictures and where possible, video clips.

Please support my blog by liking, sharing or commenting.  Thanks