How to Talk to a Cancer Patient Without Being a Complete Twit

I enjoyed reading “8 rules on how to talk to a cancer patient” because I think much of it is written with ‘tongue in cheek’.  Great title!

In UK we might even spell the word ‘twit’ slightly differently (UK people will get it!). Some of the rules are directed at doctors and I’m sure some doctors will laugh (if you’re a doctor and you didn’t laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a ‘pity party’ and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don’t want pity.

I’ve added rule number 9 which is a true story I picked up in my own community which I found absolutely unacceptable and I certainly did not laugh.  Thanks to ‘Patient A’ for the quote.

Read the 8 rules here:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

You may also enjoy this article which contains 16 ‘red flags’ that might mean it’s time to find a new doctor.  Easier in some countries than others and I suspect we have all encountered at least one of them.  I don’t think we should be changing doctors too often and we shouldn’t be changing just because of one of these ‘red flags’ (although the example above is pretty offensive).

16 ‘Red Flags’ That Might Mean It’s Time to Find a New Doctor

Another good one is an actor based video which discusses about the things people sometimes say (often clumsily) to patients that often don’t hit the right chord – check out my article “Things not to say to a someone with cancer“.

And of course we all look so well as Neuroendocrine Cancer patients – but you should see our insides.
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!

NET Cancer Blog – 2015 in review

The WordPress.com stats team have prepared a 2015 annual report for my blog.  Special thanks to those who got a mention! Why not review my posts which received a 2015 Mention in Despatches ?

Here’s an excerpt:

Madison Square Garden can seat 20,000 people for a concert. This blog was viewed about 62,000 times in 2015. If it were a concert at Madison Square Garden, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

Neuroendocrine Cancer – a Doctor’s experience

Richardson-Michael
Dr Michael Richardson – NET Cancer Patient

UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR’S STORY FROM THEIR WEBSITE BUT I’M TRYING TO OBTAIN THE SCRIPT ELSEWHERE.

When I was undergoing my initial treatment and surgery I didn’t really have the knowledge I have now.  I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening.  In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo.

As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to read a story by Dr Michael Richardson from North Carolina USA.  Diagnosed in 2011, he talks about his diagnosis and treatment for Neuroendocrine Cancer which is the basis of my blog.  Although Dr Richardson was not a Neuroendocrine Cancer expert at diagnosis, he has been able to put his medical knowledge and clinical understanding to great use.  Not only has he carefully interpreted his diagnosis and his treatment plan, he has also been able to explain the detail in a very understandable way – great for patients but also very useful for medical staff not familiar with Neuroendocrine Cancer.

 

This blog is to consolidate his patient story written in sections and as far as I can see it only appears to be published in his local newspaper where he is a guest contributor.

His story so far is written in three parts comprising a number of sections as follows:

Section 1 – Parts 1 – 4.

Section 2 – Parts 5 – 7.

Section 3 – Parts 8 – 9.

Section 4 onwards will follow when I have it (if you like my Facebook page, you will see future updates as they are published ) – click here and ‘Like’

Thank you for reading

Ronny

I don’t post everything on WordPress so please like my associated Facebook page to keep up to date (click here) (please make sure you have not already liked the page, otherwise you might end up ‘unliking’ the page 🙂 )

Disclaimer
My Diagnosis and Treatment History

Not all cancers are black, white, blue, pink – some are very grey

Not all cancers are black, white,

Over the last few months, I’ve seen quite a few posts entitled “Not all Cancer is pink”.  I suspect it’s a reference to the ubiquitous publicity that many women’s cancer related advocates, bloggers and organisations attract.

Those who use this phrase are perhaps concerned there is an imbalance and inherent unfairness in the distribution of support and are frustrated that their own cancer does not fare as well publicly? I share that frustration, however, I take my hat off to the battalions of advocates, bloggers and organisations who work very hard for breast and the various gyneacological cancers whether they push pink or not (and for the record, they don’t all push or even agree with the ‘pink’ thing).

I’ve even seen this term used within my own community – ‘Not all cancer is pink, some are black and white’.  This is clearly an attempt to tie in the well-known ‘pink’ to the not so well-known ‘black and white’. Notwithstanding the potential for upsetting hard-working women’s cancer organisations and the fact that those in the NET community who push the pink ‘insult’, do not have a corresponding ‘Not all cancer is blue’ article, I also think we might be missing a trick.

And here’s the trick which is my alternative view on where we should be focused – Not all Cancer is black and white and nothing in cancer is ever black and white.  As I don’t want to indulge in ‘Cancer Olympics’ (it can backfire), I’m clearly talking about the context of the phrase ‘black and white’ rather than the ribbon colours.

Let me explain my logic.  There are two sides to most people’s experience or perception of cancer.  Firstly, symptoms appear, a diagnosis is made, treatment is applied and if it works, the patient will hopefully go into remission after a period of time, normally 5 years.  The other side is that sadly, some people may not survive the ordeal and that even applies to certain so-called ‘pink’ cancers (metastatic breast cancer for example). Clearly there are variations of my very simple binary explanation but these two outcomes are very common scenarios.

However, many cancers (including my own Neuroendocrine Cancer) are often silent, produce vague symptoms, are difficult to diagnose, treatment plans can be a challenge, most metastatic patients and many with other stages will never really be cured, and will need lifelong support (another challenge we need to focus on).  They are extremely cunning and sneakyNeuroendocrine Cancer has many ‘grey’ areas.  Clearly there are also variations on this theme but with many scenarios and different outcomes.

Not all cancer is pink, that’s true. However, not all cancer is ‘black and white’ – some can be extremely ‘grey’. This is one of the reasons why I say “Every single day is NET Cancer Day“.

If we want more attention, let’s learn from other cancer awareness activities instead of attacking their colours.  Lesson No 1 – they don’t use animals as icons because people won’t take them seriously.

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!

patients included

best in show blog 2018

Neuroendocrine Cancer – the devil is in the detail

Nick Robinson BBC
Nick Robinson BBC

Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day.

Like a lot of people, Nick’s life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend.

He assumes the post vacated by James Naughtie, an extremely hard act to follow – a man who would frequently sink his teeth into a politician’s leg and not let go until he got an answer – or at the very least he would paint them into an embarrassing corner. It’s a tough job as most politicians are extremely wily characters, masters of ‘double speak‘ and expert in answering a question without getting into the detail the questioner wants.  As we all know, the devil is in the detail.

Although the article introduces some new facts about his cancer experience, I was really looking for more detail.  That said, even without the ‘devil’, the latest article is inspiring for most (….man goes back to work after a tough fight with Cancer).

So why am I so interested in the detail of Nick’s Cancer? Simple – because he does not have Lung Cancer as frequently and widely reported in the media. Lung Cancer is the ‘politician’s answer‘ or the ‘double speak answer’ to avoid going into complicated detail. The correct answer is he has Neuroendocrine Cancer with a Lung Primary.

I’d really like to turn the tables and interview Nick, we seem to have so much in common. We are both self-confessed workaholics, we both went to an annual Asthma clinic, we both told our Asthma nurses we had lost weight and we both were sent for a scan as a result. Following our scans, we were both diagnosed with Neuroendocrine Cancer.  Like Nick, I also have an interest in politics but wouldn’t make a good one due to my love of detail and hate of ‘double speak‘.

This is not a new problem for Neuroendocrine Cancer.  The most famous of patients is the Apple founder and now deceased Steve Jobs.  He is frequently (even to this day) reported to have had Pancreatic Cancer rather than Neuroendocrine Cancer of the Pancreas (an Insulinoma to be precise).  Although not as famous as Jobs, UK musician Wilko Johnson (of Dr Feelgood fame) is a similar story. I touched on this dilemma in my article The Human Anatomy of Neuroendocrine Cancer.

Nick – good luck with the new job.  By the way, it’s really OK to say you have Neuroendocrine Cancer!

 

You can read the full article here if you have a Times subscription.

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!

Not all Cancer is simple

Not all Cancer is simple
Not all Cancer is simple

So Victoria Derbyshire has breast cancer and has used her ‘workplace’ as a platform to let people know she is a determined survivor. Nothing wrong with that, it’s great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below).  Although many of us will be wishing it was so, not all cancer is simple!

victoriaTake Neuroendocrine Cancer for example. For some, this ‘silent’ cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with other conditions often with debilitating symptoms. Once diagnosed, surgery (if it’s possible) is just one of a number of treatment options and it will often be multiple times.  Follow on treatments include an array of biochemical and nuclear options. If the disease is metastatic, which it frequently is due to its years of ‘silence’, then the condition normally becomes incurable and the patient will be treated for the forseeable future, very often with a reduced quality of life. Victoria might not think she had a fight but for many others, this is a particularly apt word – especially those who can never be sure the cancer has gone.

I’m not suggesting that well-known people shouldn’t make their cancer experience public – in fact I’m all for that!

Get well soon Victoria, I really mean that.

Let’s attack Cancer metaphors

Let’s attack Cancer Metaphors

In the past 24 months, I’ve read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words ‘fight’, ‘battle’ and other ‘military’ sounding terms.  The authors say that perhaps this is not the best language to use.  One author used the term ‘violence’ to describe these type of metaphors.  A ridiculous misrepresentation of the metaphor in my opinion.

Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use.  I don’t like Cancer – it attacked me, it attacked my family, it attacked others I know, it has killed people I know……. it has killed millions of people and changed many lives. I’m ‘fighting’ Cancer.  I’m in a ‘battle’ with Cancer.

But I don’t mean all that in any ‘violent’ way……….  Dear trendy writers,  please stop misinterpreting what language people use for your own trendy populist purposes. 

One of the arguments used by these ‘trendy’ writers and newspaper authors against the use of what they perceive to be ‘military’ or ‘violence’ metaphors, is that people die of Cancer and therefore they are seen to have ‘lost’ their battle or fight. Clearly, it’s sad when anyone dies of any illness.

We all die at some point, ‘life’ eventually kills us. Yet, few people are reported to have lost their fight with life. So why focus this “fight” debate on cancer?

I have access to ‘reinforcements’ and ‘allies’; and their ‘weapons’ in my battle with cancer.  There are many options including surgical strikes with invasive and minimally invasive forays. The use of WMTD (weapons of mass tumour destruction) is authorised if applicable, i. e. I have chemical and nuclear options. Using these ‘weapons’ and deploying them both strategically and tactically, I can put up the best fight possible and by adjusting the disposition of my ‘forces’ when required, I can delay the advance of the ‘enemy’, protect my flanks and force it to change its course or retreat.

Not happy with infiltrating your body, Cancer also wants to take advantage of your fragile state by playing with your mind. It does this by creating the illusion of an uncertain future, makes you worry about your family and makes your family and friends worry about you. I’ve therefore also deployed a psychological warfare capability to counter this threat. It’s a weapon known as ‘a positive mindset’.

If it finally gets me, I know I’ll have tried my best and I will go down fighting hoping to be mentioned in despatches. I certainly do not see this as a defeat and anyone who knows me will not think that either.  I know that others will carry on the ‘fight’ in my absence until Cancer is defeated (and it will be defeated).

Just my approach, please don’t take offence as none is intended.

I believe people quite naturally ‘fight’ in their own way and there are even parts of the human anatomy whose job it is to fight illness and infection without us even realising they are doing it. So whether we like it or not, our bodies are fighting illnesses and we cannot stop them doing it. It’s natural.

In fact, to ‘fight’ has many contexts and not just the contrived ones used to argue against use of these metaphors. If you check the Oxford/Cambridge dictionaries (the Supreme Headquarters of the English language), you will see that ‘fight’ has numerous meanings including “to struggle to overcome, eliminate or prevent” or “to strive to achieve or do something”. What that means is that some people will use the word fight to describe the ability to get out of bed in the morning, to walk to the local shops, to go to a restaurant for a meal. Fighting to see a doctor who understands their cancer, fighting for access to the best treatment, fighting when you think someone isn’t listening. I fight cancer by writing a blog. The context is really important.

As for me, I have no intention of ceasing the use of words such as ‘fight’ and ‘battle’ in my war of words with Cancer.  It’s my way of coping.

I’m loving this article – Cancer Ninja

Read this post to know why – WHY I FIGHT

 

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 Share this post

Screw that diagnosis and get on with it!

 

Screw that diagnosis
Screw that diagnosis and get on with it!

Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you’re feeling a little bit down and need cheering up, dig out this blog and take a read 🙂

K**** wrote:

“I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life.

But, things get in the way and can get bumpy – cancer, being one of them (and a now, 16yo hormonal female teenager).  I took my diagnosis, thought about it for awhile, hung out on the sofa…ate a few bonbons and then, pulled my head out of my a**.  I went back to work as a Patient Care Assistant at our local hospital (feeling the need to go “medical career” again), trying to figure out what to do next – needing to get my outrageous health insurance premium off my husband’s back.  I was pissed, I had to go back to work, I had CANCER, for God’s sake – I should be looking into disability or anything that will bear this burden – but, I was well enough to bear it myself.

Continued to pull my head out of my a** and decided to pursue a career as a Registered Nurse, knowing that I, at the ripe age of (now) 53, still had a whole boatload of stuff to offer.  So, 4 years ago, I strapped my pump (yes, I’m a “pumper”) and my ‘kahoonas’ on and I went back to school full-time, working part-time, raised my hormonal daughter, rode my (new) gloriously wonderful old Off the Track, Thoroughbred “Gryphon”, got my Harleys back out and got my game on.

Yesterday, I sat for the Pennsylvania State Nursing Board test and today….I found out that I PASSED!  I am now officially, K**** ******** RN

If you’ve got the health (screw that diagnosis) and you’ve got the need to make a change – MAKE IT and make it count!  As of 15 minutes ago…I applied for an Oncology Nurse position 🙂 “

Go K**** !

Thanks for reading

Ronny
Disclaimer
My Diagnosis and Treatment History

 

Sorry, I’m not in service


sorry not in service

Featured by Macmillan Cancer – check out this link.

9-17322Logo

Featured by Cancer Knowledge Network – check out this link.

601202_197495850391101_1761531058_n

It’s good to be busy, it can take your mind off stuff you don’t really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer.  I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less.

I guess the image of ‘invincibility’ was important to me at that time.  It was part of my personal expectations and credibility. Some 6 weeks after leaving hospital following a 9 hour open surgery, I literally crawled back to the office, weak and drawn but determined to ‘make a statement’ by dint of my physical presence. A round of applause was given and for me this was as effective as any medicine I was taking.  My credibility was intact.

Treatment, tests and consultations would now be managed around work instead of the other way – after all, they couldn’t possibly function without me?  This ‘charade’ went on for some time until I eventually realised they could actually function without me and the only person expecting me to be ‘in service‘ on a treatment, testing or consultation day, was me. Additionally, it became patently obvious that people would totally understand my reasons for slowing down. However, a more serious message was being received from my body which was hinting it was more delicate than I had thought. My credibility, until hitherto sacrosanct, was taking its toll and things weren’t really back to normal. I began to realise I needed a different and better ‘normal‘.

After my ‘eureka’ moment, I totally changed my lifestyle putting my health above my credibility in the ‘pecking order’.  I still keep busy – that’s important. I’m now happily doing things I enjoy at my own pace and my fatigue levels are now under control. Here’s my 5 top suggestions for prioritising your time and activities to be able to live with an incurable cancer.

  • Reduce your stress. This is difficult with the modern life we now lead but if you can live without things that cause you stress – cease or drastically reduce their effect on you and boldness might be required to strike the right balance.
  • Quality sleep. If your illness has a fatigue element, a decent night’s sleep becomes more important. Get into a routine if possible.
  • Take time to exercise. It doesn’t need to be a marathon or a climb up Mt Everest. Even a regular short walk is enough and you can build up from there.  This also helps with the sleep, fatigue and stress reduction.
  • Learn to say no more often. This is difficult, particularly if you are the energetic multi-tasking go-getter type but your body has a voice – listen to it.
  • Do more of the things you enjoy. We’re all guilty of procrastination from time to time but get more of the things you enjoy into your calendar, it supports all the other suggestions above!

I now have a new ‘normal’ and I feel healthier and more positive.  I sometimes think I might be taking on too much leading to a return to the ‘old ways’. However, the big difference today is that I have no qualms about taking myself out of service or reducing my workload and commitments. My body tends to remind me now and then.

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!

patients included

 

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Vitamins & minerals
Vitamins & minerals – the biggest QoL challenge for NET Patients?

Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I’m happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed.

This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients – at least in the UK. As I said in blog post ‘I may be stable but I still need support’, Neuroendocrine Cancer patients need specialist dietary and nutritional advice covering a much wider spectrum than most cancer patients. In this blog, I also suggested that there does not appear to be enough research into these issues leaving many patients working out their own strategies post diagnosis and treatment.  However, I was delighted to see a study published in 2016 indicating a recognition of this problem.  The paper (click here), which was sponsored by ENETS Centres of Excellence (CoE) in UK, concluded that “Given the frequency of patients identified at malnutrition risk using MUST (malnutrition universal screening tool) in our relatively large and diverse GEP-NET cohort and the clinical implications of detecting malnutrition early, we recommend routine use of malnutrition screening in all patients with GEP-NET, and particularly in patients who are treated with long-acting somatostatin analogues”.  This amplifies the advice Tara has given many NET Patients in UK that regular blood checks of key vitamins at risk, particularly B12 and the fat-soluble ADEK (see more on this below).  Even those patients with very healthy diets can still succumb to these issues. Looking at the vast number of forum posts on this subject, perhaps this is also a problem outside of UK?

This is not just about what foods to avoid or eat in moderation, this is also about:

a. receipt of post surgical/treatment advice,

b. early knowledge and countermeasures for the side effects of ongoing and long-term treatment,

c. the intelligent use of supplements where they are applicable,

d. how to combat, treat or offset malabsorption and nutrient deficiencies caused by the complexities of their cancer and any treatment given.  Check out Blog 2 in this series which specfically looks at Malabsorption.  

e. how to deconflict these side effects with those of the various syndromes which can sometimes accompany Neuroendocrine Cancer.

In early 2011, shortly after my first major surgery and commencement of my monthly somatostatin analogue – Lanreotide (Somatuline), I started to notice a number of issues developing. I carefully searched for clues and I could see that some of my issues pointed to side effects from treatment (both from surgery and somatostatin analogues) and potentially some vitamin and mineral deficiencies. I had already been taking an ‘over 50‘ multivitamin tablet for some time before I was diagnosed and assumed I was already covered. Having analysed the issues I was experiencing at the time, I was specifically targeting B12 and my initial test score was just in range (i.e borderline). Surprisingly my multivitamin B12 content was 400% RDA – yet my blood test was borderline. That might explain the fatigue!

I later attended a fantastic patient day where I was introduced to the UK’s solitary Neuroendocrine Cancer specialist dietician. This subject was a revelation for me and I was alerted to the possibility that other vitamins and minerals could be at risk due to a combination of surgery and/or treatment, in particular the fat soluble vitamins A, D, E, K. Following a hastily arranged series of blood tests, I found my Vitamin D was insufficient and this has now been resolved through additional supplementation and more effort to absorb it through conventional means (i.e. the sun!).

I’m now on top of this issue through learning, understanding and basically becoming my own advocate. Please note this is a massive subject and the amount of information on the internet can be overwhelming.  Additionally, it is not an exact science and not everything will apply to every person.  Personally I would stick to sites where the advice is given by a nutritionist/dietician who is also experienced with Neuroendocrine Cancer.

I’m thankful to Tara Whyand who is an Oncology Dietician specialising in Neuroendocrine Cancer at the Royal Free Hospital.  Her research, advice and raising of these issues at patient meetings has been invaluable. As the only specialist in the UK (that I know of), she gets a lot of queries!  If you’re on twitter, you can follow Tara here:

https://twitter.com/LadyNourish

Even though I’ve had to limit this post to vitamin and mineral issues, it’s still much larger than what I normally produce.  Consequently, I’m planning further blogs on associated and overlapping subjects.

In the meantime, I’m very grateful to Tara for the input below:

——————————————————————————————–

NET Patients are at Risk of Deficiencies

Over the past few years I have become more aware of vitamin and mineral deficiencies in NET patients, and the impact these can have on health and quality of life. When the focus of NET treatment is on eradicating and controlling the disease, the impact on nutrition, apart from obvious weight loss, means less obvious signs of micronutrient deficiency can be missed. Below is a list of nutrients which are those most at risk of becoming low enough to cause problems. It is important that the treatment of these deficiencies is discussed with your NET team so they can prescribe suitable doses.

Minerals

Magnesium

Magnesium blood tests are an unreliable measurement and there is no way of accurately measuring body stores.

Magnesium is a vital mineral required for the function structure of the human body. Prevalence of low blood magnesium levels varies from 7% to 11% in hospital patients and clinical magnesium deficiency is frequently observed in conditions causing steatorrhoea or severe chronic diarrhoea, and the degree of magnesium depletion correlates with the severity of diarrhoea and stool fat content. Signs of deficiency include low energy, fatigue, weakness, PMS, menstrual cramps, hormonal imbalance, insomnia, bone mineral density loss, muscle tension, spasms, cramps, cardiac arrhythmia, headaches, anxiousness, nervousness and irritability. If you think you could be deficient you must ensure you consume enough magnesium (375mg per day).

Zinc

Zinc levels are best measured using a combination of blood serum and urinary excretion levels.

Zinc affects the human body through a large number of channels affecting not only cell division, protein synthesis and growth, but also gene expression and a variety of reproductive and immunologic functions. Zinc deficiency is common in undernourished patients. The absence of sufficient levels of zinc in the human body is associated with a large number of adverse health outcomes, including lower immunity, alopecia, tiredness and impaired wound healing. If you are at risk of deficiency make sure you consume enough zinc (10mg per day). If you are clinically deficient your diet must be supplemented.

Iron

Iron deficiency (hypoferremia) and clinical iron deficiency anaemia is easily measured with a simple blood test.

Iron is essential for the formation of haemoglobin in red blood cells which binds oxygen and transports it around the body. Iron is also an essential component in many enzyme reactions and has an important role in the immune system. In addition, it is required for normal energy metabolism and for the metabolism of drugs and foreign substances that need to be removed from the body. Lower iron levels are common in NET patients and there may be several causes of this. Poor iron intake, dietary iron absorption-regulating factors (e.g., vitamin C and copper) or iron distribution factors (e.g. vitamin A), are believed to be causes. Patients may also lose iron due to blood loss from the bowel in intestinal or rectal NETs or after surgery. It may also be possible that diarrhoea in NETs causes malabsorption of iron in the intestine too. Symptoms include tiredness, paleness, thinning hair, impaired immunity and feeling breathless. If you are at risk of having lower than normal iron levels you must consume enough iron (14mg per day). If you are clinically deficient your diet must be supplemented.

Copper

Diagnosis of copper deficiency is based on low serum levels of copper and ceruloplasmin, although these tests are not always reliable.

Copper is an essential trace mineral that is required for human health. This micronutrient is necessary for the proper growth, development, and maintenance of bone, connective tissue, brain, heart, and many other body organs. Copper is involved in the formation of red blood cells, the absorption and utilization of iron and the synthesis and release of life-sustaining proteins and enzymes. These enzymes in turn produce cellular energy and regulate nerve transmission, blood clotting, and oxygen transport. Copper stimulates the immune system to fight infections, to repair injured tissues, and to promote healing. Copper also has an antioxidant effect against oxidative stress.  Gastrointestinal surgery can lead to malabsorption of copper and other micronutrients. Long term malabsorption of food from the gastrointestinal tract can also lead to copper deficiency which puts many more NET patients at risk.  Symptoms of deficiency include neutropenia, impaired bone calcification, myelopathy, neuropathy, and hypochromic anemia not responsive to iron supplements. If you are at risk of lower than normal levels of copper you must consume enough (1mg per day). If you are clinically deficient your diet must be supplemented.

Selenium

Selenium levels are measured using plasma selenium blood tests.

Selenium is an essential micronutrient in humans and functions in many biochemical pathways. Proposed antioxidant pathways of selenium, include the repair and prevention of oxidative damage, alteration of metabolism of carcinogenic agents, regulation of immune response and repair of DNA damage. It works alongside vitamin E and selenium levels are often low during cancer and in patients on long-term intravenous nutrition.  Symptoms of deficiency include muscle pain and tenderness.  Everyone is required to have 55 µg a day and if you are clinically deficient your diet will need to be supplemented.

Water Soluble Vitamins

B1-Thiamine

Thiamine is not usually tested as diagnosis is based on symptoms and a trial of thiamine supplementation. If a doctor is unsure, they will measure erythrocyte transketolase activity and run a 24-hour urinary thiamine excretion.

Vitamin B1, or thiamine is an essential B vitamin which is required for the breakdown of sugars and amino acids. Absorption of thiamine is greatest in the jejunum and ileum, but it is it is inhibited by alcohol consumption and by folic acid deficiency. The most common cause of deficiency is alcoholism, although states causing malabsorption such as gastrointestinal surgery are also a factor. It may also be possible that diarrhoea causing malabsorption of nutrients from the intestines could put a patient at NET patient at risk of deficiency. Symptoms initially include fatigue, irritability, poor memory, sleep disturbances, anorexia, and abdominal discomfort. When more severe it involves hospitalisation due the effects on the nervous system and heart.

Patients who are at risk of deficiency must consume enough thiamine (1.1mg thiamine per day). Patients who are deficient must have their diet supplemented.

B3-Niacin

Niacin is not usually tested but may be useful to confirm diagnosis using urinary excretion of N 1 -methylnicotinamide (NMN).

Niacin also refers to both nicotinamide and nicotinic acid and is required as part of the way energy is produced by the body.  When carcinoid tumours produce hormones such as serotonin, these patients suffer from carcinoid syndrome. These are symptoms such as flushing, diarrhoea, wheezing and damage to heart valves (carcinoid heart disease). When the tumours make large amounts of serotonin, the amino acid, tryptophan, gets used up. When tryptophan stores are low it cannot be converted into the vitamin niacin, which may then cause deficiency. In a NET study, 28 per cent of patients with gastroenteropancreatic /carcinoid tumours and carcinoid syndrome were niacin deficient. Patients without carcinoid syndrome did not have niacin deficiency.  Niacin deficiency can also be caused by cirrhosis and diarrhea. Niacin deficiency leads to pellagra, the typical symptoms of which are diarrhea, dermatitis and dementia. All patients with carcinoid syndrome must take a nicotinamide containing supplement to treat and prevent this deficiency and it is a good idea to get enough niacin if you are at risk of deficiency for other reasons (approximately 40mg nicotinamide a day). Niacin or niacinamide may cause flushing!

B6-Pyridoxine

Vitamin levels are not usually tested but measurement of serum pyridoxal phosphate is most commonly used.

Vitamin B6 comprises 3 forms: pyridoxine, pyridoxal and pyridoxamine, and has a central role in the metabolism of amino acids. It is involved in the breaking down of glycogen into glucose. In addition, vitamin B6 plays a key role in metabolism of neurotransmitters, such as dopamine and serotonin, and it ensures efficient functioning of the immune system and making of red blood cells. The symptoms of vitamin B6 deficiency are local inflammation of the skin and dysfunction of the nervous system. Some NET patients may be at risk of deficiency due to malabsorption in the intestines and undernutrition.  If you are worried you may have lower levels make sure you consume enough (1.4mg per day). If you are deficient you diet must be supplemented.

B9-Folate

Serum folate reflects folate status unless intake has recently increased or decreased.

Folic acid is the synthetic form of folate. It is used in supplements and for food fortification. Folate functions together with vitamin B12 to form healthy red blood cells. It is also required for normal cell division and the normal structure of the nervous system.  It is possible to become deficient in folate due to malabsorption of nutrients in the intestine through diarrhoea and other malabsorption states such as surgery. If you are worried you may be at risk of deficiency ensure you get enough folate/folic acid (200 µg per day). If you are deficient your diet will need to be supplemented.

B12-Cobalamin

Vitamin B 12 must be measured alongside complete blood count and folate levels.

Cobalamin plays a role in DNA synthesis and regenerates methionine for protein synthesis. Low vitamin B12 levels have been observed in NET patients receiving somatostatin analogues and therefore monitoring of vitamin B12 levels is important during long-term therapy. Vitamin B12 deficiency has also been found to be common in type 1 gastric carcinoid NETs after Antrectomy and/or Gastrectomy. Patients with diseased or surgically removed ileums (end of the small bowel) and those who have bacterial overgrowth in the area are also at risk of Vitamin B12 deficiency. In addition, patients with insufficient pancreatic enzymes are also at risk of vitamin B12 deficiency as they play a key role in the steps before absorption occurs. If you are worried your levels may be low you must consume 2.5µg a day. If you are clinically deficient your diet must be supplemented, usually with regular injections.

Fat Soluble Vitamins

A, D, E and K

Somatostatin Analogues (Octreotide and Lanreotide) based injection treatments for a variety of NETs may cause deficiencies in some vitamins. This is because they may alter absorption of dietary fats which contain vitamins. Enzymes are usually released from the pancreas to break down nutrients such as fat, but pancreatic enzyme release can be reduced when somatostatin analogue medications are given.  When fat is not broken down properly, stools become pale/yellow, loose, greasy, foul-smelling or frothy and floating –‘steatorrhoea’. Your precious vitamins therefore end up in your toilet instead. One study followed 54 patients, who mostly had carcinoid tumours and were on somatostatin analogues for at least 18 months. It found that only one fifth of patients had visible steatorrhoea, but 6% were deficient in vitamin A, 28% deficient in D, 58% in E and 63% in K1. This shows that even if you don’t have visible signs of steatorrhoea, you may still be deficient in one or more vitamin!

A-Retinol

Serum retinol blood tests are the means of measuring vitamin A in the body.

Vitamin A is a fat soluble vitamin absorbed through the small intestine either as retinol or carotene, and then converted to retinyl palmitate which is stored in the liver. Normally the liver contains a 2 year store of vitamin A. Vitamin A deficiency has a wide range of ocular manifestations including conjunctival and corneal xerosis, keratomalacia, retinopathy, visual loss, and nyctalopia, or night blindness, which is the earliest and most common symptom. If you are worried about having low levels make sure you consume enough (800 µg per day). If you are deficient your diet will need to be supplemented.

D 3 –cholecalciferol

Your 25(OH)D levels can be measured with a simple blood test.

Cholecalciferol is a nutrient and hormone. Recent evidence for the non-skeletal effects (those apart from bone mineralisation) of vitamin D, coupled with recognition that vitamin D deficiency is common, has revived interest in this vitamin. Low vitamin D levels are linked to higher rates of several other cancers. Vitamin D is produced by skin exposed to ultraviolet B radiation and obtained from dietary sources, including supplements. Persons commonly at risk for vitamin D deficiency include those with inadequate sun exposure, limited oral intake, or impaired intestinal absorption from the diet (as above). The most recent evidence actually points out that the sun is not to be relied on as a source of vitamin D and oral intake is important. If you are worried you may have low levels you must speak with your doctor to arrange supplementation with or without a test.

E- α-tocopherol

Vitamin E can be tested by looking at the α-tocopherol level or ratio of serum α-tocopherol to serum lipids.

Vitamin E is a powerful antioxidant that can be regenerated by vitamin C after oxidation in the human body. It prevents damage of polyunsaturated fatty acids in cellular membranes. Signs of deficiency include dry skin and neurological symptoms. If you think you may have low levels make sure you consume enough (12mg per day). If you are deficient your diet will have to be supplemented.

K- Phylloquinone

Vitamin K deficiency can be measured by looking at the prothrombin time.

Phylloquinone is required for blood clotting and deficiency results in bleeding. Since this deficiency is common in patients with fat malabsorption due to severe liver disease and somatostatin analogue treatment it is important that you consume enough (75 µg per day). If you are clinically deficient you will need to receive supplementation.

Summary

Of course these are only the nutrients which are at risk of deficiency, there are many other nutrients and botanical extracts which may help patients with NET’s. It is vital that nutrition is considered for every patient with a NET and we hope one day each NET unit will have NET Specialist Dietitian to make this possible.

It is vital that nutrition is considered


Links to the other nutrition blogs:

Article 2 – Gastrointestinal Malabsorption.  Overlapping slightly into Article 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 3 – Gut Health.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discussed probiotics.  Input from Tara Whyand.

Article 4 – Food for Thought.  This is a blog about why certain types of foods or particular foodstuffs can cause issues.

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients.

You may also appreciate these articles where there is overlap:

The Diarrhea Jigsaw – different things can cause diarrhea, it’s not all about syndromes.

The Constipated NET Patient – yes they exist!

Very grateful to Tara for the input.

Other useful links which have an association to this blog:

{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE

{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE

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!

patients included
This is a Patients Included Site

WEGO Awards

 

The C Word

CEFwr-HW8AAB04X‘The C Word’ or ‘The Big C’ – the subject which must not be discussed.  Or is this now an out of date phrase?  I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word).  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission.

We now have much better tools to discover and treat cancer. Moreover, because we are increasingly open about cancer, there is more awareness. According to Cancer Research UK, as we all live longer, more than one in two people in the UK will be diagnosed with some form of cancer during their lifetime. Personally I find that a staggering statistic. We definitely need to talk about cancer!

We now live in a more open and some would argue less stoic society where more people are prepared to talk about their serious illnesses. Together with government and other organisations’ health campaigns, backed up by the rise of social media, the ‘C Word’ is not just ‘big’, it’s fantastically huge! Consequently, more people know and understand the disease and more is known about the science of the disease.  This is not only creating better diagnostic tools and treatments, but has introduced a raft of preventative measures and messages resulting in increased awareness amongst the general public.  Bloggers do their part too 🙂 – particularly with the rare and less common cancers which sadly don’t make the headlines enough.

If you look at the statistics for Neuroendocrine Cancer, there is both an increased incidence (rate of occurrence of new cases) and increased prevalence (living with the disease). The increased incidence is most likely due to better diagnostic tools but some credit must be given to better awareness (medical staff and the public). Increased prevalence is most likely due to a combination of better treatments, mostly good prognostic outcomes and people are generally living longer.

I’d like to focus in on awareness as that is the aim of my blog. I was diagnosed in 2010 but I didn’t really come out of the ‘cancer closet’ until 2014 and this resulted in a number of lifestyle changes plus the creation of this blog. I have plastered what some would call personal and private information all over the internet in the name of awareness. Some people might have raised eyebrows about some things I published. However, I genuinely believe that the only way to draw attention to the issues faced by Neuroendocrine Cancer patients is to tell the story of Neuroendocrine patients in factual, educational and no holds barred ways. I also like to put a positive spin on everything and where appropriate, a smattering of humour. I do this not just because I think of myself as a positive and humorous person but because I think there is still a lot to be positive about and humour is medicine as far as I’m concerned 🙂

Back to ‘The C Word’.  If you want to be inspired, if you want to feel positive, if you want to combine these two things with humour, then please watch ‘The C Word’ – the portrayal of the late Lisa Lynch broadcast on BBC last week.  This true story was brilliantly put together to display the range of emotions and problems coming out of any cancer diagnosis; shock, anger, acceptance, etc. Moreover, it also covers all the practical issues such as time of work for the patient and the next of kin, holiday insurance, to the effects on close family.

Lisa Lynch took up blogging after being diagnosed with advanced breast cancer. When you read her bio “I’m a cancer bitch but not cancer’s bitch” – you just know you’re dealing with someone positive. There are few TV programmes that I’ve watched in total silence but this was one of them.  For me it brought back memories of my own experience of going through diagnosis and treatment. The issues of time off, holiday insurance, effects on family and friends, trying to establish a new normal, all resonated.  I’d be lying if I said I didn’t shed a tear (or two).

I guarantee you many women will have checked their breasts for lumps during and after watching that programme and as a result, many will have gone to see a Doctor.  Awareness saves lives.

Watch the programme here (click) (UK only sorry).   This programme is only available on BBC iPlayer until 28 May 15

You can explore her blog here (click)

thanks for listening.

Ronny

Are you following my Facebook page?  If not, you’ll be missing out on selected news and short blogs – Click here and ‘Like’ the page

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

The trouble with the ‘NET’ Part 1

Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.

In a study published last month, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey.  In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news.  Unfortunately social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer.  I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

Has wide access to the internet exacerbated this problem? 

The rise of the (Inter)NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain.  Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location.  Whether you like it or not, we are witnessing the power of social media and its effect on society. However, the ‘NET’ can also provide ‘misinformation’ and it’s pretty good at it. 

When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NETs’) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂  However, I soon found out the NET is potentially more dangerous than my NETs.  Put a foot in the wrong place and ‘boom’. Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some.  Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem.  I’m very careful where I look and now use that to my advantage, along with many other savvy cancer patients.  

The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true. For example, there is a 20 year old myth that sugar feeds cancer cells and this seems to be shared by many patients as something which looks true.  It is NOT true and the biggest cancer advocate organisations will all confirm this.  Although research has shown that cancer cells consume more sugar (glucose) than normal cells, no studies have shown that eating sugar will make your cancer worse or that, if you stop eating sugar, your cancer will shrink or disappear.  However, a high-sugar diet may contribute to excess weight gain, and obesity is associated with an increased risk of developing several types of cancer – that is a totally different problem. This is one of a number of cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at Cancer Research UK’s ‘Don’t believe the hype – 10 cancer myths debunked’.  Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again).  Cancer Research UK will always provide balanced commentary on these claims.

Cancer Research UK is not alone in trying to help dispel some of these myths – you can also fact check on the big US site Cancer.Gov – see their myth busting article here.

I also like the list from Cancer.NET – American Society of Clinical Oncology (ASCO) – read it here.  (Science Fact or Science Fiction)

You may also enjoy:

Alternative Therapy risks (or lack of) click here

Snake-oil-hero-620x348-hero
“But it works… I read it in the news!”

Miracle Curesclick here

miracle cure banner

Hope is great, false hope is not.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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

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

Breaking the NET

safe_imageI was both interested and perplexed to see that a story about the colours of a dress was the most discussed topic on the news and social media yesterday. I would have thought there were more important things to talk about but I take my hat off to the marketing people who made that one go viral. According to the UK news, this story “broke the internet”.

I wish some marketing gurus would make a NET Cancer story go viral!  I’m making inroads though.

In the meantime, do you think this zebra is mainly white and gold or black and blue?

 

Turning a negative into a postive

Lung Cancer Breathalyser
Lung Cancer Breathalyser

Interesting piece in the news today and there’s an amazing story behind it.  The “Lung Cancer Breathalyser” is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let’s hope this invention works.

When I was reading the article, I immediately recognised his wife as a blogger I was following and who died on Christmas day after fighting advanced colon cancer for 2 years.  Her final and penultimate blogs are very inspiring and worth reading. Her final post was written by her mother (excuse the swear word on the blog graphic) and the penultimate was published in the Times and went fairly viral on twitter. Her blog site is here (click)

Like my Facebook Page

Follow me on Twitter

Thank you for reading

Ronny

Intelligent patients – just what the doctor didn’t order

 

ccf-logo
This blog was featured by Carcinoid Cancer Foundation

 

I’m extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation’s blog site!

I’ve been following these guys since I was diagnosed.  They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet.

The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit organization chartered by the State of New York for the purpose of encouraging and supporting research and education on carcinoid and related neuroendocrine cancers.

The blog is designed to explain why I’ve felt it necessary to learn a lot more about both my disease and my general health; and why I think others would benefit.  The title is slightly ‘tongue in cheek’ but it touches on a lot of serious points for all Cancer patients. I hope you enjoy!

READ THE BLOG HERE

If you want to keep up to date with my blogs please ‘Follow’ on WordPress (where you are reading it now) and:

Like my Facebook Page

Follow me on Twitter

Read more about Carcinoid Cancer Foundation

Thanks for listening

Ronny

Disclaimer
My Diagnosis and Treatment History

Disobedient Objects

Disobedient Object - home made gas mask
Disobedient Object

My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington.  A particular display caught my eye entitled “Disobedient Objects” and I immediately thought it had a scientific sound to it.  Imagining a set of everyday objects which somehow didn’t behave as you would expect, it sounded great fun so I wandered in.  How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change.  The term ‘disobedient’ was used as these objects were designed by grassroots social movements mostly for use in street protests.  These ranged from bike locks for chaining your head to a fence to makeshift tear gas masks; to large inflatable cobblestones designed to act as a barricade between protestors and charging police without causing damage.

Disobedient Object

However, I found myself becoming interested in the story behind the display which focussed on protests by people who had taken to the streets because they felt they had no other option to make their point known; or simply to show mass support for a cause they believed needed a much louder voice – their mission was to effect change. My interest increased when the exhibit video explained that the expansion of the internet and social media had brought new ‘online’ ways of  ‘protesting’ or ‘campaigning’ to ‘effect change’ and some of these are now particularly powerful in many democratic societies.  They are also much easier and safer to do than taking to the streets! For example in the UK, e-petitions which have reached 100,000 signatories can result in the petition subject being brought before a House of Parliament committee for further action.  Social media is also very powerful if you can get a high-profile supporter to post or tweet your ‘campaign message’ and make it go ‘viral’.  Some of these online ‘protests/campaigns’ will make it into the national newspapers and national TV news – particularly powerful for the third sector if the campaign is associated with signatures for e-petitions and/or charitable donations (viz a viz ice bucket challenge etc).

Campaign by blogging
A modern ‘Disobedient Object’

Whilst I was in this exhibition, it suddenly occurred to me that these people had the same type of mission as I do except that I use a modern (and safer) version of ‘disobedient objects’ in the form of this blog and it’s associated Facebook page.  I’m also a regular signer of e-petitions for causes I believe need my support.  I’m certainly not alone and it’s a sign of how the internet has changed the way we live, the way we think of ourselves and how we interact with each other and our governments. My blog and its associated Facebook site is designed to spread awareness of Neuroendocrine Cancer and offer support to people affected or interested in the disease.  However, it is also there to help ‘effect change’ alongside and in support of the mainstream Neuroendocrine Cancer organisations across the world. You will therefore be pleased to hear that I’m not inviting you to take to the streets in protest about the lack of attention paid to Neuroendocrine Cancer.  There is no need to chain yourselves to railings, face tear gas or throw large inflatable objects at the police 🙂 So, go on……. be ‘disobedient’ and help me ‘effect change’ by raising awareness of Neuroendocrine Cancer and the issues faced by patients who are living with the disease.   What do I need you to do?

-Please ‘Follow’ this blog (you will find the ‘Follow’ button above or below the post depending on the machine you are using)

-Please ‘Like’ my Facebook page: https://www.facebook.com/NETCancerBlog/    (please ensure you like the page rather than a single post on the page)

-Are you on twitter? ‘Follow’ me here: https://twitter.com/RonnyAllan1

-Please also considering sharing my blog posts, Facebook posts and tweets as widely as possible.  Sharing is caring 🙂

Thanks for reading and hope you had a wonderful time being disobedient!

Ronny

 

If you want to learn more about the ‘Disobedient Object’ exhibition, see here: http://www.vam.ac.uk/content/exhibitions/disobedient-objects/

Well done NHS!

supernhs1I’ve been reasonably lucky with my health over the years, suffering only the usual common ailments.  I was slightly asthmatic as a child but this seemed to disappear when I left school going straight into military service. They say an army marches on its stomach… only partly true but the military did look after my health with regular check ups.  I think the only medical emergency I had in my 29 years in that wonderful organisation was being knocked out in boxing training aged 16! When I left the military in 2001, I was fortunate to benefit from free health insurance at my new employers. However, I was now at an age where there was a bit of ‘wear and tear’ and bits were starting to fall off 🙂  I had a very pleasant experience fixing a tennis elbow problem  in 2002 and then shortly after a 6 week recovery from pneumonia in 2003. The health insurance was handy with the former but the latter was handled by my GP (…antibiotics and bed!).

Boom!  Neuroendocrine Cancer in 2010.  The health insurance was suddenly extremely useful as I was able to get all my hospital ‘in-patient’ stuff in nice en-suite rooms. I’m not saying I had an easy time but the surroundings and resources probably made it more bearable.  The ‘out-patient’ visits were always pleasant with nice tea and newspapers to pass the time away in the inevitable wait for the consultant meeting (even in private hospitals/clinics, appointments always seem to be later than published).  I also had my Lanreotide injections done at home for 3 years which was extremely helpful.

As you can see from above, my experience with NHS hospitals is very limited. However, from 1 Jan this year, I no longer have health insurance and am now a fully fledged member of the NHS club!

Should I be worried?  Not a day goes by without a headline (or several) claiming the NHS is in crisis, bankrupt, almost privatised, doomed……. I’m sure you see those headlines too? So with some trepidation, I set off for my first Outpatient appointment yesterday at NHS Bournemouth Hospital, incidentally only 7 days after I would have been seen (by the same Consultant) using  my health insurance policy if it was still in force.  I was meeting a Surgeon who was beginning the assessment of a ‘lesion’ in the upper left pole of my thyroid which was recently picked up on Octreotide and CT scans.  I reported to reception, was dealt with and pointed in the direction of the Consultant rooms.  I noticed the area had a nice looking Cafe and a large TV showing Sky News (heaven!).   There was a 20 minute overrun of my designated appointment time but that is less than I normally found in private establishments!  Expecting just an exploratory chat, I was surprised to have to undergo a Fine Needle Aspiration (FNA) biopsy and am now waiting on the results. In addition, he will see me in 3 months and suggested this is nothing to worry about.  I’m sure he’s right but the biopsy result will still be anticipated.

I didn’t detect any sign of NHS chaos in this hospital, everything went very smoothly indeed – a very pleasant experience.

Good start to my new treatment regime.  Well done NHS!

Now to sort out who will be doing my Lanreotide injection………  🙂

Ronny

If you’ve enjoyed reading this please ‘Like’ the post, you can also rate it using the ‘5 stars’ button.  Comments are brilliant too!

Like my Facebook Page

Follow me on Twitter

2014 in review

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

End of the year but not end of the mission

Ronny  & Chris Allan
Ronny & Chris Allan – festive sweaters 🙂

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’ then but I wanted to publicise 2 things:

  • Neuroendocrine Cancer awareness
  • give something back by fundraising for the medical team who treated me and then set up PLANETS Charity

The blog was a temporary mechanism for both and I never had any plans to extend it much beyond a summary of the challenge once it was complete. However, I received so much positive feedback that I decided to maintain the blog for a while longer.  Eight months later, I continue to put my thoughts and ideas to ‘e-paper’ and it’s now my mission to raise awareness of Neuroendocrine Cancer (a.k.a. NET Cancer) and related issues for the foreseeable future.

My hope is that it will at least provide useful backup to the major NET Cancer organisations and help with their own awareness campaigns.  I also hope it will be of some use to newly diagnosed patients as a summary of my personal experience with some signposts to credible advice and content – mainly the key NET Cancer organisations and support groups.  I remember my first couple of months after diagnosis – the internet can be a minefield for the uninformed!

2015 looks like being an even more successful year for NET Cancer awareness than 2014 and I’m looking forward to doing my bit.  I’m already working on new blog posts and ideas, some of them perhaps a tad controversial ….. so stay tuned!  I’d like to thank every single person who has viewed at least one of my posts, liked my posts, rated my posts and contributed with comments.  The experience has exceeded all my expectations.  Moreover, it has given me the motivation and determination to continue delivering.

I have some plans to enhance my awareness campaign including:

  • Updating my blog site to make it look more like a web site with links/signposts to the most credible information and help for people who have found my site through searches.  I also intend to publish ‘guest blogs’.  It would be great if more people could ‘Follow’ my blog site so that I can attract other bloggers (NET and non NET).  This will definitely help with spreading awareness.
  • A Facebook site in the form of a single page initially which I might then expand later once I assess its utility. I would be grateful if you could ‘Like’ my page in order that I can establish a viable presence and then exploit it with credible information and links.  This page is not intended to compete with any forum site or closed Facebook group, this is just an expansion of my own NET awareness campaign plan for 2015 and is also aimed at non NET Cancer readers.  I will remain an active member of forums and closed Facebook groups as this is what gives me a lot of my inspiration, motivation and knowledge to blog!  I will, however, be posting useful information from credible NET Cancer organisations and other bloggers.  You can ‘Like’ this page here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
  • On Twitter, I aim to burst through the 1000 follower total in the first quarter of the year.  Twitter is a phenomenal outlet and in many ways, it potentially has a greater and more varied reach than other social media tools.  I want to complement the two media outlets above with twitter coverage ensuring maximum awareness opportunities.  You can ‘Follow’ me here: https://twitter.com/RonnyAllan1

I hope you all have a wonderful and very happy new year and I wish you all the best for 2015!

Ronny

p.s. A summary of all my blog posts is below in order of the most viewed (although the newer posts still have developing view counts). My home page understandably has the largest view total accounting for nearly a sixth of all blog hits. If you are attracted by any of the titles below, feel free to have a look by clicking on the relevant post.  Spare a thought for the lesser viewed posts – I was still learning and had a smaller ‘fanbase’ 🙂

Post views as at 1230 GMT on 30 Dec 14

Diagnosis – I’m no longer in control 438
Four years on 393
#NETCancer Diagnosis – how early is early? 382
The Basic Science of #Carcinoid Tumours 354
Awareness, Awareness, Awareness 332
#NETcancer – early diagnosis, not early misdiagnosis? 324
The Global War on NET Cancer 315
The Anatomy of #NETCancer 273
Does my Flush beat yours? 270
I woke up on #NETCancer day 270
Google is not a synonym for research 254
Carcinoid and Chocolate 251
If your Doctors don’t suspect it, they won’t detect it 244
Passive patient or active advocate? 233
Horrible Hormones 227
Mind over matter 226
Glass half full or half empty? 213
Did you mean to lose weight? 202
No flushes please! 196
Just got (a) shot in the buttocks 194
If you don’t suspect it, you can’t detect it 189
When you hear hoofbeats, don’t always think ‘horse’ 181
Always thank your Nurse – sometimes they’re the only one between you and a hearse! 173
From Blagging to Blogging 167
My blog goes International! 164
My treatment is a pain in the butt! 163
Laughter is the best medicine 150
Finding Hotspots 141
I may not be rich, but I do have priceless grandchildren 141
My stomach sometimes cramps my style 137
North of the wall is a dangerous place – you must never go there! 136
My ‘right-hand’ woman – Chris 133
Every day is #NETCancer Day! 132
I’ve just been nuked! 131
Surgery – the gift that keeps on giving 129
Childhood Neuroendocrine Cancer – 1 in 7 million! 125
Hadrian’s Wall Day 6 – Mission Complete! 124
Glad I married Princess Fiona 122
The subject nobody wants to talk about 109
Things are not always how they seem 106
Hadrian’s Wall Day 1 – Sunny Newcastle (no fog on the Tyne) 105
If it’s not raining, it’s not training 103
Am I at fighting weight? 99
A Commitment to Fight Cancer 96
Through the Keyhole? 89
Exercise – it’s a free prescription 88
Tobacco and Cancer: A smoking gun? 87
Beyond the Wall 83
Up and atom!! 81
Met an old friend today; his name is Gym 80
So what next? 78
Who needs a gallblader anyway? 78
Army to the Rescue 76
Hadrian’s Wall Day 5 – Pass the morphine! 75
“You’re from Dundee – you must like fighting” 74
Hadrian’s Wall Day 2 – The wall appears 72
Forget the posturing, it’s results that matter 70
Hadrian’s Wall Day 4 – Welcome to Cumbria! 69
Queen Mother of the Isle of Wight 69
What’s it all about? 68
Hadrian’s Wall Day 3 – Spectacular but wet! 64
A Highland Coup 63
Is there life on other Planets? 61
What have the Romans ever done for us? 55
Walking Hadrian’s Wall 49
Bournemouth Marathon 48

Tobacco and Cancer: A smoking gun?

cancer smokingI’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 that smoking could increase the risk of breast cancer.  The anatomy is pretty well covered by the risk of smoking.

I haven’t seen any evidence that smoking increases the risk of Neuroendocrine Tumours (NETs) in the relevant parts of the anatomy listed above but I wouldn’t be surprised if there was a connection or at least an increased risk with certain types and/or locations of NETs.  Although years of  research have proven that smoking causes cancer, this doesn’t mean that all smokers will definitely get cancer or that all non-smokers won’t. It means that smoking greatly increases the risk of this disease. Smokers are, on average, much more likely to get cancer than non-smokers.

One of my other activities outside of NET Cancer awareness and support work, is my role as a Cancer Research UK Campaigns Ambassador for New Forest West (a UK Parliament constituency in West Hampshire on the border with Dorset).   Through this task, which I support in my own time for free, I’ve been helping Cancer Research UK with their various campaigns, in particular, the one to introduce standard tobacco packaging into the UK.  Evidence shows that removing all branding and design from tobacco packs makes it less attractive for both adults and children. This is a controversial measure opposed by the tobacco industry and their sponsors. However, it was voted through by the UK Parliament early this year and is currently in a consultation phase.  The general election may delay its introduction as law but hopefully this will become a reality in 2015.  Clearly the tobacco industry is involved in rearguard actions ‘as we speak’.

When I was given the campaign material to read in Dec 2013, I was totally shocked by some of the statistics provided:

  • Since tobacco advertising became illegal in the UK in 2002, tobacco companies have invested a fortune in branded packaging to attract new smokers, particularly younger people;
  • Around 207,000 children aged 11-15 start smoking in the UK every year (6,900 classrooms worth).  This means that nearly 570 children are lighting up and becoming smokers for the first time every day. Addiction keeps them smoking into adulthood, where it then kills one in two long-term users;
  • Two thirds of new smokers start before they are 18 and the vast majority while still teenagers;
  • Smoking-related diseases kill over 100,000 people in the UK every year.  Worldwide the figure is 6,000,000 and projected to rise to 8,000,000 by 2030.
  • Tobacco use caused 100 million deaths worldwide during the 20th century, and if current trends continue it will kill 1 billion people in the 21st century.

plain_packs_620_x_348Standardised tobacco packaging (sometimes known as plain packaging), is not a UK initiative.  Australia was the first country in the world to introduce standardised packaging for tobacco products in December 2012 and have since reported the biggest fall in smoking for 2 decades.  In addition to the UK, New Zealand and Ireland are working on similar legislation. Other countries are considering or have committed to some action including France, EU, Norway, Canada, India and Turkey.  Countries said to be opposing such measures include USA, Italy, Bulgaria, the Czech Republic, Greece, Poland, Portugal, Romania, Slovakia and Spain.

You can read more about standardised tobacco packaging at this link here: http://www.cancerresearchuk.org/support-us/campaign-for-us/setting-the-standard-for-plain-cigarette-packaging/evidence-and

For UK nationals, you can help keep the pressure on the government to introduce the legislation quicker by emailing your Member of Parliament – see button labelled ‘Email your MP’ within the above link.

For other readers, you will probably find similar campaigns in your own national organisations and I recommend you read what they have to say.

Thank you for reading! I would love to hear your feedback on this issue so fire away!

If you would like to receive an email alert when a new post is published, click on the FOLLOW button.   I love comments and questions about my blog posts, please feel free to add!

Are you on twitter?  Follow me by clicking here: https://twitter.com/RonnyAllan1

Check out my Facebook site here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723

Finally, please note this post contains my own views and opinions.  It does not necessarily reflect the views or opinions of any Cancer or Charity organisation with which I’m associated.

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

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 were experiencing were unusual for them.  Great advice and a reminder that the patient has a duty to help in their own diagnosis.   Ali also said to insist on seeing a doctor again if you felt something was still not right after the first visit.  Again, excellent advice on the basis it appears to have saved her life.   Click here for Ali’s interview

One other major story which caught my attention was the statement from NICE (National Institute for Health and Care Excellence) that they intend to update their guideline document “Suspected cancer: recognition and management of suspected cancer in children, young people and adults”.  The statement followed news of research which indicated up to 10,000 people in England could be dying each year due to late diagnoses. This research cited the reasons why cancer diagnoses may be missed and these included the fact that over 200 different types of cancer exist, each with different symptoms, and that patients present at their GP with symptoms which are non-specific.  Does that sound familiar to NET Cancer patients?

I found the NICE statement very interesting because in the 4 years I’ve been studying NET Cancer, I’ve never heard of these guidelines so thought I’d take a look.  No surprises that NET Cancer (or more specifically, Neuroendocrine Tumours or Carcinoid) was not mentioned as a condition.  I searched the entire 405-page document using the search terms ‘Neuroendocrine’, ‘Carcinoid’ and ‘flushing’ and only turned up a single reference to ‘Neuroendocrine’ within the children’s cancer section under Neuroblastoma.

The guidelines are constructed to look at cancer in terms of anatomy so I, therefore, looked at the most common place for a NET cancer – the small intestine.  Good time to refresh my view on this by reading blog post The Anatomy of NET Cancer. I was happy to find a section on cancers of the small intestine which it defines as “a rare cancer of the duodenum, jejunum or ileum, with different histological subtypes. Most GPs will not diagnose a case during their career. The rarity of this cancer means there are no relevant studies of its clinical features. It may have symptoms similar to those of stomach or colorectal cancers. The main method of diagnosis is by biopsy, which is performed in secondary care.”   That got me thinking that the target area for NET Cancer awareness campaigns in the UK might need to be focussed more on secondary rather than primary care?  Food for thought?

I then found a non-anatomy based section further on entitled “Recommendations for specific symptoms and signs” which then cross references to the potential cancers involved.   I was hoping to find something in there so I searched on the most common symptom of Carcinoid Syndrome (in most cases indicating an advanced carcinoid tumour) but there was no sign of the most common symptom of the most common type of NET Cancer.

It’s fantastic that NICE is updating its guidelines to provide the latest clinical and best practice advice to GPs.  I also read that they are encouraging GPs to refer more people to secondary care as another way of tackling the late diagnosis issue (particularly important for NET Cancer patients when you consider the NICE guidelines above) – see BBC News article 

It’s right that the more prevalent and more aggressive cancers be included as a priority in the NICE guidelines but NET Cancer is a notoriously misdiagnosed condition and people do die of this disease.  Additionally, many people have to live with a reduced quality of life due to the symptoms and side effects and this comes at great cost to health providers.  Perhaps the incidence rate of NET Cancer is still not high enough to merit mention in the NICE guidelines. Or perhaps there is still a general ignorance of these types of cancers in the ‘medical establishment’?

You can see a copy of these guidelines here although I suspect only UK-based patients will be really interested. Personally, I feel there could be a section specifically on Neuroendocrine Tumours as there are for other ‘systemic’ cancer types, perhaps with cross references to the various anatomy based sections in the document.  Consequently, I’ve emailed NICE asking if there is anything in the pipeline to include guidance on NET Cancers and I urge UK-based patients to do similar – their email is: nice@nice.org.uk

NET Cancer patients and their advocates have been pushing and pushing for more recognition and it appears in the UK, this will go on for some time. Whilst I recognise the positive moves above, it’s important that both primary and secondary care medical staff are alerted to the symptoms of NET Cancer and are able to spot these at an earlier stage.

NET Cancer patients need an early diagnosis, not early misdiagnosis!

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

Awareness, Awareness, Awareness

awareness-road-sign

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 far-flung as North America, Australia/Far East and Europe.  Their common aim is to raise awareness of NET cancers.  Efforts are  focussed around World NET Cancer Awareness Day, which is held on 10th November.  Check out this link for more info: www.netcancerday.org

wnad-logo-jpeg-150x150
10th November

One of the key aims of my blog is to spread awareness of NET Cancer and I’m very pleased to be part of the ‘worldwide team’ doing my bit to help. I started blogging in Apr this year mainly to support a sponsored walk but it has turned into something more permanent.  I start to twitch if I haven’t blogged for more than a week 🙂  I’m now fast approaching my first 10,000 hits which is beyond all my expectations.  My blog statistics package also lets me know my posts have been read in 56 countries indicating NET Cancer is truly an international disease.  Check out the long list below to see how your country is doing!

I’m also helping to spread awareness through my associations with PLANETS Charity: www.planetscharity.org and NET Patient Foundation: www.netpatientfoundation.org  In fact, I’ll be representing the latter at the NET Patient Foundation event on Tuesday 4th November in the UK Parliament.  This event aims to increase awareness amongst parliamentarians about NET cancers and the challenges to timely diagnoses – in short we are taking our fight for greater awareness directly to the heart of the UK government!

I’m also a ‘tweeter’ which is such a fantastic tool for spreading awareness if used properly.  I run my own personal site and also administer the PLANETS Charity account.  If you want to follow both of these accounts please link here:

Please also follow my colleagues in NET Patient Foundation: https://twitter.com/netpatientfound

If you want to help spread awareness of Neuroendocrine Cancer, please follow my blog and share across your own social media systems.  If you want to receive an email when a new post is published, click on the follow button (this is a system generated message and your email will not be used by me for any other purpose).  In addition to WordPress (the blog tool), I also post on Facebook, Twitter, Google+ and StumbleUpon.

Finally, please look at the list of blog hits by country:

Ronny

 

Country Views
United Kingdom FlagUnited Kingdom 5,103
United States FlagUnited States 2,595
Canada FlagCanada 290
Australia FlagAustralia 222
Netherlands FlagNetherlands 136
Spain FlagSpain 66
Ireland FlagIreland 49
United Arab Emirates FlagUnited Arab Emirates 43
Italy FlagItaly 39
Russian Federation FlagRussian Federation 27
France FlagFrance 20
Sweden FlagSweden 20
Portugal FlagPortugal 18
Belgium FlagBelgium 17
South Africa FlagSouth Africa 16
New Zealand FlagNew Zealand 14
Switzerland FlagSwitzerland 14
India FlagIndia 14
Turkey FlagTurkey 12
Philippines FlagPhilippines 11
Norway FlagNorway 11
Denmark FlagDenmark 11
Kuwait FlagKuwait 10
Hong Kong FlagHong Kong 10
Belize FlagBelize 9
Germany FlagGermany 9
Barbados FlagBarbados 9
Qatar FlagQatar 7
Austria FlagAustria 6
Czech Republic FlagCzech Republic 5
Singapore FlagSingapore 5
Japan FlagJapan 4
Bahrain FlagBahrain 4
Brazil FlagBrazil 4
Malaysia FlagMalaysia 4
Lebanon FlagLebanon 3
Cyprus FlagCyprus 3
Croatia FlagCroatia 2
Romania FlagRomania 2
Korea, Republic of FlagRepublic of Korea 2
Israel FlagIsrael 2
Finland FlagFinland 1
Taiwan FlagTaiwan 1
Viet Nam FlagViet Nam 1
Greece FlagGreece 1
Luxembourg FlagLuxembourg 1
Algeria FlagAlgeria 1
Nepal FlagNepal 1
Hungary FlagHungary 1
Isle of Man FlagIsle of Man 1
Mexico FlagMexico 1
Kazakhstan FlagKazakhstan 1
Colombia FlagColombia 1
Nigeria FlagNigeria 1
Vanuatu FlagVanuatu 1
Kenya FlagKenya 1

A Commitment to Fight Cancer

Steve Davis and the Author
Steve Davis and the Author

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 Research, Macmillan, etc) but there were dozens of smaller charities also represented including PLANETS ( www.planetscharity.org )  Sure, there were many ‘professionals’ and the ‘fitness types’ who were there because they run marathons as a sport/pastime – but they were vastly outnumbered by people who were running to make a statement and to raise money for their chosen charities.

The ‘statement makers’ were big, small, tall, short, long hair, short hair and some with no hair.  To me some of them did not look like they would be able to run 26.2 miles.  However, their presence there meant they had made the commitment.  If you want to witness the meaning of pride, determination, relief and happiness all bundled into one, simply go and look at the faces of people as they cross the finish point of a marathon. If you also want to be moved, go to a live marathon.  I saw a blind man running who was attached to a ‘guide’ and I saw ladies who had clearly just undergone (or were undergoing) chemotherapy.  Many people had the names of family and friends emblazoned on their running tops and the one which made me frantically ‘blink’ was a lady who had clearly lost a child through some illness.

I think all cancer patients and those who have been touched by this terrible disease will join me in thanking everybody who steps up and commits their time and effort to make money for charities all over the world.  It is really very much appreciated.

I found the whole day quite humbling and my emotions were certainly tweaked.

 

Ronny

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

 

 

 

Passive patient or active advocate?

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).

Passive vs Activated Patient
Passive vs Activated Patient

I actually enjoy researching neuroendocrine disease and I’d like to think it was all in one book somewhere – this simply isn’t the case! From what I’ve read in the past 4 years, I suspect the ‘all encompassing’ book would need to be about 10 feet thick. I also suspect I’m still at the tip of the iceberg! I don’t have room in my house for a 10 feet thick book, so I have to rely on ‘Professor Google’ a lot.  I learnt early on to be careful not to believe everything I find on the internet (…..including on patient forums).

Once you have been researching NETs for some years you learn which are the best sites and what is the sort of thing to ignore.  This wisdom came in handy recently when I was studying neuroendocrine tumours of the thyroid – apparently rarer than hen’s teeth.  To understand the subject, I also researched the Thyroid (in the anatomical sense) and then all types of Thyroid Cancer. It didn’t take long before my head was hurting but it will be the subject of a future blog post.

One of the issues with Neuroendocrine Cancer is the diversity of locations and symptoms in terms of the anatomy and presentational difficulties. Neuroendocrine tumours (NETs) are rare and they present complex challenges to diagnosis and treatment. Even in the case of metastatic spread to the liver and beyond, there are some important differences in the nature of these tumours compared to gastrointestinal and pancreatic cancers.  Many patients are first thought to be suffering from other ailments before finally being diagnosed with Neuroendocrine Cancer, thus delaying their treatment.  It’s not just confusion over vague symptoms leading to misdiagnosis of common ailments, I even found a story of someone who had been misdiagnosed with Pancreatic Cancer and been given 12 months to live.  One year later, the person asked a doctor friend why he was still alive and feeling OK which led to further checks and the discovery that this person actually had a Neuroendocrine Tumour of the Pancreas – a less aggressive form of cancer (normally) which was treatable and offered a better prognosis.  Amazing story but this person’s treatment was delayed by 12 months. NET cancer in any part of the body is best left to (or overseen by) Neuroendocrine specialists (in my opinion).  However, had this guy done his own homework, he might have asked some key questions making his doctors at least think of some alternative scenarios.  Food for thought?

Thanks for reading

Ronny Allan

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

Disclaimer
My Diagnosis and Treatment History

No flushes please!

I bet you my flush beats yours?
No flushes please!

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 midway within this 6 week period and this gave me some confidence that I hadn’t been forgotten! Despite being told my cancer was incurable, I vividly remember not feeling ill enough to be a cancer ‘patient’ and I therefore continued to act and work normally. After getting over the initial shock, a little bit of me still thought it was all a big mistake!

Then, on 6 Sep 2010, I was introduced to the world of ‘Somatostatin Analogues’ – namely Octreotide. Although I was working normally, I was experiencing worsening flushing episodes, some of which were drawing attention at work with one person asking if I had blood pressure problems! The flushing was a result of my metastatic Neuroendocrine Cancer and associated Carcinoid Syndrome. Check out this blog: http://wp.me/p4AplF-2w My Oncologist was spot on though, as the flushing had to be brought under control before I could undergo the cyto reductive surgery – an acute syndromic effect known as ‘Carcinoid Crisis’ during major surgery could be fatal. I was fortunate enough to have home visits from a Nurse as part of my treatment and ‘Ann’ turned up with a box of daily dose Octreotide (25 micrograms) plus a ‘sharps box’. Ann came to see me the first 3 days to make sure I was able to self administer – however, I volunteered to stick it in myself on day 1 – in for a penny in for a pound! It did eventually reduce the flushing and was sufficient to counter the risk under anaesthesia.

The daily Octreotide was a bit of a pain to administer though. The dose was in an ampoule which had to be ‘snapped’ open and the (very expensive) drug then had to be aspirated using a wide bore needle from the ampoule into the syringe. Then the needle had to be swapped for a smaller bore which I would then self-inject against a rota of left stomach, right stomach, right thigh, left thigh, and so on. I only messed it up once which resulted in a cut finger and a wasted drug dose. I’m no longer squeamish about injections though 🙂 In Dec 2010 after major surgery, I was converted to a monthly long acting injection of Lanreotide (same job as Octreotide). This is a thicker and larger needle and is injected ‘deep subcutaneous’ into the buttock by a trained nurse – check out this blog post: http://wp.me/p4AplF-cV and here: http://wp.me/p4AplF-6c I’ll most likely be dependant on ‘Somatostatin Analogues’ for the rest of my life but I almost look forward to my 4 weekly ‘butt dart’ (a brilliant term used by my American friends). I suspect these injections are the reason so many people say to me “You look so well”.

I haven’t had a single flush since surgery/start of Lanreotide – lucky I’m not a card player 🙂

Please help spread awareness of Neuroendocrine Cancer by sharing this blog.

Ronny

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

Want to receive my blogs by email?  Click on the ‘Follow’ button.

 

 

Childhood Neuroendocrine Cancer – 1 in 7 million!

images
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 and although you can develop it at any age, it does tend to be associated with those in later life with many statistics quoting ages in the region of 40 – 60 years at time of diagnosis.  So childhood Neuroendocrine Cancer is uncommon.

I recently had my survivor story (in the form of my blog) published by Carcinoid Cancer Foundation.  I was hoping to inspire people through my own story but ended up being inspired myself after discovering a survivor story from an eight year old who had a Neuroendocrine Tumour (NET) of the Appendix.  As a group of Cancers, I personally don’t believe Neuroendocrine based cancer is that rare but according to the survivor story, only 1 in every 7 million children will be diagnosed with a NET ……  now that is rare!  Check out the story here.

Children really are resilient and hopefully the medical team have caught this NET early enough for little Emily to lead a normal life going forward! The article not only put a smile on my face but gave me the inspiration to generate this blog.

Please help spread awareness by sharing this blog.

Thanks for reading

Ronny
Disclaimer
My Diagnosis and Treatment History

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

Want to receive my blogs by email?  Click on the ‘Follow’ button.

The Global War on NET Cancer

Cancer under attack
Cancer under attack

The term Global War on Terrorism was first coined by US President George W Bush in late September 2001.  In summary it was a call to hunt out and destroy terrorism wherever it could be found. That war continues today.  However, I was interested last week to hear US President Barack Obama demand that the world take action against the “cancer” of jihadist extremism.  Ronald Reagan is also reported to have used the ‘cancer’ metaphor in relation to terrorism back in the eighties. It would appear that ‘terrorism’ and ‘cancer’ are bound together to some extent, well at least until one of them is defeated.

Science and medicine writers are frequent users of ‘war’ metaphors in the battle against cancer (see, I could not complete the sentence without reference to a ‘war’ word!). Some people actually disagree with the use of  military language within cancer articles and presentations.  They suggest the words are used in an attempt to help patients but can actually have the opposite effect.  I disagree with this view, I think military language is ideal for use in this fight – see, I did it again 🙂

However, there is another global war ongoing against the very metaphor used by successive US presidents to categorise terrorism. In fact there is some research to suggest that this war began in 1971 with the signing of the National Cancer Act (Richard Nixon). Although a legislative act for the US, other nations would have taken note and reviewed their own policies and commitment. Despite growing and ageing populations, you can see from available statistics that the fight against cancer is being won.  However, certain cancers still lag behind.

As you can see from my blog statistics below (please take a look!), Neuroendocrine Cancer does not appear to be unique to a single country or continent, it’s very much a global issue (or at least there are people in those countries interested in my blog!). The incidence is fairly similar across the globe from the statistics available – anything between 2 – 6 cases per 100,000 of the population – i.e. its rare!

INCA-Netty-Announces-New-Name_14

The International Neuroendocrine Cancer Alliance (INCA) is the global advocate for neuroendocrine cancer patients. Online, they appear to operate under the cover of NET Cancer Day http://netcancerday.org/  They are also on Facebook and Twitter.  Every year on NET Cancer day (10 Nov), their voice gets louder in support of Neuroendocrine patients.  I won’t repeat any more detail here as it would be good if you would take some time out to look at their website and join them in support of the Global War on NET Cancer.

Make a note in your calendar for 10 Nov – I’ll be at home having a ‘coffee and cake’ morning and I might even invite some of you who are reading this!  However, don’t forget your wallets and purses as every penny helps with the ‘fight’ 🙂

10th November
10th November

 

Ronny

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

Want to receive my blogs by email?  Click on the ‘Follow’ button.

The following table is a snapshot of my blog views as at 29 Aug 2014 1200 GMT:

 

Country Views
United Kingdom FlagUnited Kingdom 4,315
United States FlagUnited States 1,323
Canada FlagCanada 222
Australia FlagAustralia 143
Netherlands FlagNetherlands 121
United Arab Emirates FlagUnited Arab Emirates 43
Ireland FlagIreland 42
Italy FlagItaly 24
Russian Federation FlagRussian Federation 18
France FlagFrance 17
South Africa FlagSouth Africa 15
Portugal FlagPortugal 13
Sweden FlagSweden 11
New Zealand FlagNew Zealand 10
Belize FlagBelize 9
Barbados FlagBarbados 9
Denmark FlagDenmark 9
Norway FlagNorway 8
Switzerland FlagSwitzerland 7
Spain FlagSpain 7
India FlagIndia 6
Philippines FlagPhilippines 6
Qatar FlagQatar 6
Germany FlagGermany 6
Austria FlagAustria 6
Belgium FlagBelgium 5
Czech Republic FlagCzech Republic 5
Malaysia FlagMalaysia 4
Bahrain FlagBahrain 4
Japan FlagJapan 4
Brazil FlagBrazil 3
Romania FlagRomania 2
Croatia FlagCroatia 2
Cyprus FlagCyprus 2
Nigeria FlagNigeria 1
Hong Kong FlagHong Kong 1
Luxembourg FlagLuxembourg 1
Vanuatu FlagVanuatu 1
Taiwan FlagTaiwan 1
Finland FlagFinland 1
Kenya FlagKenya 1

 

Met an old friend today; his name is Gym

throw-in-the-towel-sweat-293x300

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 into a number of positives and getting fitter is one of them! One aspect of my recent Hadrian’s Wall walk was to see how I’d cope with a major physical and mental challenge. Walking was chosen as a low risk activity although it turned out to be quite tough!

At 58 years of age, I clearly won’t be making the GB 2016 Olympic team but my aim is to become fitter than the average 58 year old (perhaps 59 by the time I meet this objective…..).   I started nice and slow today mainly the walking machine as a warm up and then straight onto a number of upper body exercises.  I stopped or rested when I felt pain – didn’t want to overdo it at this early stage. I’ll keep building up my upper body strength on the machines but in a week or two, I’ll move onto running and the concept rowers for stamina.

My shoulders and arms are hurting from the gym work – that is an excellent sign 🙂

————————————————————————–

Geekie Gabble – reintroduced by special request from medical geeks!

I just completed my Chromogranin A (CgA) and 5HIAA tests this morning and then went straight to the gym!  I undergo many tests but these ones are pretty important as they measure residual tumour bulk and activity.  Other than signs of tumour growth showing on scans, they would be used to decide whether further treatment is required or not. I repeat these tests every 4 months currently.

The CgA blood test is an excellent marker to help detect and monitor the activity of Neuroendocrine tumors in general. CgA is a protein found in carcinoid tumor cells, and it’s normally secreted into the blood. Elevated levels of CgA are found in 80-100% of patients with Neuroendocrine tumors.  When I was diagnosed, my test results were way out.

5HIAA is a 24 hour urine test using a 2 liter sample bottle!  Those of you who have been paying attention to my blogs will know that Neurondocrine tumours can release excessive amounts of particular hormones especially Serotonin.  When serotonin breaks down in the body, it is converted first to something known as 5-HT and then to 5-HIAA, which is then excreted into the urine.  This gives the medical team an idea of how active the tumours are.

Both of these tests have been normal for the last 3 years with one exception where an elevated CgA for 2 consecutive tests became a factor in a decision to tackle some distant lymph node hotspots (one of which is still work in progress).

Ronny

 

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

 

 

Am I at fighting weight?

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 relied on looking in the mirror as a guide :-)VectorToons.com

I always remember weighing myself at the gym though and was consistently around 12 stone (76 kg).  Wow that’s ‘Super middleweight’!  I therefore assumed this was now my normal weight and thought nothing more of it.  However, in 2010, at a routine GP sponsored Asthma clinic, a discussion about my weight sparked off a chain of events leading to a diagnosis of Neuroendocrine Cancer,  A really, really innocuous discussion (or at least it was to me) about why I’d gone down from 12 stone to 11½ stone.  You can read more details about this here: http://wp.me/p4AplF-1W  and here: http://wp.me/p4AplF-bY.

After 4 years of treatment I’m now down to 10 stone (63.5 kg).  My weight dipped to 10½ stone following two major bouts of surgery but I put it back on during recuperation.  I did eventually get back to 11½ stone but in the last 12 months, my weight has now gone down to 10 stone – a 15% reduction from pre-diagnosis!  This drop in weight is significantly greater than the one which led to my diagnosis.  However, this was mostly controlled through minor changes to diet and exercise and puts me right in the middle of the green zone on the BMI chart! Additionally, my waist size has reduced from 34″ to 30″ since diagnosis. I haven’t had a 30″ waist for well over 30 years – cost me a packet in new trousers 🙂  All of that said, when I now look in the mirror, I do see that wee skinny lad from Dundee (as do others….)

So – am I now at my ‘fighting weight’? Probably but other weaknesses are potentially a hinderance! I’m not currently very strong physically and whilst I’m conscious of my increasing age, I do seem to generate aches, pains and minor injuries far too easily.  The slightest bit of ‘garden football’ or manual labour inside or outside the house, seems to hurt more than it should.  Walking isn’t a problem, I can walk for miles – see post: http://wp.me/p4AplF-iw  – I’ve always had good legs!  Plus much of that is in the mind and I’ve always been strong willed.  In short I have no physical upper body strength and that is where my focus is now moving. My consultant has recommended the gym and armed with a GP referral, I start next week!  My initial aims are to bulk up my upper body and to progress from walking to running to increase my stamina.

Watch this space!

 

Ronny

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

Want to receive my blogs by email?  Click on the ‘Follow’ button.

 

 

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

braveheart

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 erected a statue of him just a few months ago.

I left school aged 16 joining the Army as a Junior entrant and trained at Junior Tradesmen’s Regiment near Troon in Ayrshire Scotland, spookily where Dick McTaggart now lives! Once basic training was done and dusted, everybody had to be assigned a hobby. I didn’t really have something I was very good at, so my choice was made for me. According to my Sergeant, I was ‘allocated’ to the boxing squad because my home town was Dundee and therefore I must be a good fighter!  As this was announced in public, my feathers bristled with the increased ‘street cred’ 🙂

Winning my first fight was probably a mistake – although as it was an ‘Inter-Company’ competition the celebrity factor was good 🙂 There were 3 x 1 minute rounds where me and my opponent (who had a much longer reach!) just swung our arms non stop hoping for contact and I won on points. The second and third fights were a blur and I lost both on points. I remember being knocked out in training and had to spend the night in the Medical Centre under observation.  Interestingly, the knockout blow came from the fist of the guy who I beat in my first fight! The fourth fight was against a seasoned civilian and I lasted into the second round when the referee stopped the fight on the basis my opponent was ‘too strong’.  As I had some memory issues after that fight, my sergeant decided to allocate me to the much safer hobby of  ‘Rock Climbing’ 🙂

So the stereotyping backfired.  The closest I’d been to fighting in Dundee was chucking a dustbin at someone up an alley down town and then beating a hasty retreat to a safe spot with other ‘friendlies’.  That said, I did put 150% into the boxing training and became extremely fit.  I never personally conceded any of my 4 fights – I won one, lost two on points and the fourth and final one was stopped by the referee – not my decision!

I’m fairly certain that my 18 month junior soldier experience increased my confidence and I started to realise I was not one to give up easily. That trait has remained with me throughout my life with words such as determined, tenacious, stubborn, strong-willed, forceful and direct having been used over the years to describe it.  I took this trait into my second career as an ‘ex military’ person working with ‘civilians’.  I remember numerous occasions when I had not been well but still turned up for work much to the annoyance of others.  Once when it was suggested that I should go home and rest up, I replied that the only way I would be leaving the office against my wishes was on a stretcher.  They laughed but I was deadly serious.

I suspect I’ve mellowed over the years as most people tend to do when they get older. However, this trait of mine has been quite handy in the past 4 years for fighting Neuroendocrine Cancer. I’m winning on points so far 🙂

Stay positive all!

p.s. I don’t own a kilt, I don’t have ginger hair and I’ve never eaten a deep fried Mars Bar 🙂

Ronny

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

 

 

 

 

Four years on

Feeling great!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 didn’t expect such a well-looking man given the haemoglobin results I’m looking at”.

I was eventually referred to a specialist whose immediate words were “something isn’t right here”. Following a bunch of tests, he then told me he had “found something very unusual“.  More tests and even more tests………. and then on 26 July 2010 I was told I had widespread and incurable Neuroendocrine Cancer which was quite uncommon and without treatment I would eventually die.

A lot has happened since then.  I’ve had approximately 25 hours of surgery/invasive procedures much of it under general anaesthetic and around 34 days in hospital.  I’ve had countless scans and other tests. I’ve had more injections than I’ve had hot dinners – this is actually true!  More importantly, I’m still alive and kicking!  I’m feeling great too having recently completed a 6-day hike along the 84 miles of Hadrian’s Wall.

If you want to read (and hear) more detail about my diagnosis, check out these blog posts:  Diagnosis – I’m no longer in control and Did you mean to lose weight?

 

Thanks for reading

Ronny Allan – Living with Neuroendocrine Cancer!

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

Disclaimer
My Diagnosis and Treatment History
Most Popular Posts

 

Finding Hotspots

dd2012beada949edfbeb54217f9b058d

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 finding in Tenerife was relatively successful – it isn’t rocket science. However, that’s the second time in the last month I’ve been involved in ‘finding hotspots’. The first was explained in my blog posts: http://wp.me/p4AplF-n3 and: http://wp.me/p4AplF-o3.  As a reminder, the Octreotide Scan is currently the gold standard for ‘finding hotspots‘ in Neuroendocrine Cancer patients, although newer techniques and binding agents are coming on line which have greater efficiency (e.g. Ga-68 DOTATATE PET/CT).  A hotspot was identified in 2010 (amongst others) in the area of my neck – specifically in the left Supraclavicular Fossa (SCF) lymph nodes (collar bone area).   There was also some take-up in my left axillary nodes (armpit).  The armpit nodes were palpable and therefore resected in Feb 2012 as a follow on from major surgery in 2010 and 2011.  During the same procedure, the surgeon also opened me up in the area of the left SCF nodes and removed 5 of them.   However, all of these 5 nodes tested negative and given the findings (and the nature) of the Octreotide scan, this was unusual (to me).

I met with my Consultant before going on holiday and he explained my test results were all good but that there was still a ‘hotspot’ showing up on the Octreotide scan in my neck. The scanning machine is newer technology than the one used in my previous Octreotide scans. It also has a built-in CT (SPECT) scanner and therefore the ability to overlay multiple types of scans. In fact the radiologist is reporting the neck hotspot location as the thyroid rather than the left SCF lymph nodes indicated in the two previous scans in 2010 and 2011.

Whatever is going on in my neck area has been there for at least 4 years but as my biochemistry results are good, I guess it’s not life threatening.  Nonetheless, 3 separate Octreotide scans have lit up an area in my neck indicating there is a risk which needs to be managed. My Consultant has been investigating whilst I was on holiday, so will provide updates in future blogs.

Ronny

 

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

 

 

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

Up and atom!!

 

comics_le001rmbL

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 a card which I have to carry for 3 months.  It has a number of functions including acting as a ‘get out of jail free’ card should I set off the radiation alarms in airports etc.  Off to Tenerife in just over a week – that would not do at all!  I was also told on Day 1 to stay away from young children and pregnant women for 3 days.

Having chatted with the radiologists, I discovered this machine is not only newer technology than the one in Bournemouth but it also has more ‘bells and whistles’ ….. or as my late father used to say about any new technology “it takes corner kicks” – however, this was normally in reference to a TV or a washing machine 🙂  The cameras were bigger than I remember and instead of moving around the body in ‘polygon’ style stages, this one moves in a circular fashion. The cameras do come quite close to the body and I suspect claustrophobics might have an issue with this scan. However, it’s the lesser of two evils and eyes can always be shut! This machine not only takes corner kicks, but throw-ins too.  It has a built-in CT scanner and they whizzed me through this at the end of the day 2 gamma scan.  This provides them with the ability to overlay scans with maximum precision. In the old system, this would be done manually by comparing the pictures from two different machines.

This is without doubt the most boring scan in the world!  Each day is 1 hour plus and the patient has to keep still for maximum accuracy. They do a top to bottom full body as a reference picture (around 15 minutes) and then two circular scans as ordered by the Consultant (mine was the abdomen and the chest/neck).  These circular scans take 25 minutes each.  In 2011, I did suggest they install a flat screen TV with Sky Sports on the ceiling but this does not appear to have been taken up!  They do have a radio and CD player though and they even ask the patient which station or CD they would like to be listen to.  I was about to jokingly ask for The Sex Pistols CD ‘Never mind the Bollocks’ but decided against that just in case there was any medical confusion with the scan output 🙂

Ronny

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

 

 

 

 

 

Forget the posturing, it’s results that matter

 

Good Results
Good Results

 

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 team they support or favour (often citing it as the reason why their team didn’t win).  I suppose it’s always been like that and football fans don’t appear to have changed over the years, even though many of the players are now more or less overpaid celebrities rather than sportsmen (the use of gender is intentional).  But we should take all this posturing with a pinch of salt (players and armchair pundits), as it’s the results that actually matter!

Bad Results
Bad Results

 

 

If you’ve been following my blog (and if not, why not!), you’ll have noticed I’ve been undergoing some testing.  Firstly I had a bone scan in April, a Chromogranin A blood test prior to the Hadrian’s Wall walk and a 5HIAA urine test around the same time.  On return from the Wall, I went straight into an Echocardiogram and I’ve just completed a 3 day Octreotide/SPECT scan session.  I’ve been a busy boy!   All these tests have outputs which will be collated and analysed by my Consultant Oncologist. No matter how well I feel, how well I look, how active I’ve been and how sanctimonious I feel about doing all the things that are good for me, it’s the results that actually matter and in cancer treatment they matter a great deal.  I’ll be seeing my Oncologist in about 2 hours to find out the latest results.  Hoping for a Manchester City outcome 🙂

You can refresh your knowledge of these tests here:

  • 5HIAA Urine Test: http://wp.me/p4AplF-9R
  • Bone Density Scan – I haven’t actually covered this before but basically I need one of these annually to keep an eye on my bone density. The scan is known as Dual Energy X-ray Absorptiometry or DEXA for short.  Osteoporosis is a risk of long-term use of Anti-coagulants (blood thinners). See:   http://wp.me/p4AplF-M
  • Chromogranin A Blood Test: http://wp.me/p4AplF-1o and:   http://wp.me/p4AplF-9R
  • Echocardiogram: http://wp.me/p4AplF-2e
  • Octreotide/SPECT Scan: http://wp.me/p4AplF-lY  and: http://wp.me/p4AplF-7h

 

Ronny

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’ve just been nuked!

keep-calm-and-get-radioactive-3

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’ 🙂

For those who have been studying my blogs ready for the summer exam (did I mention this?), you will remember that Neuroendocrine Tumours can sometimes be difficult to find and / or display on conventional scanners.  You may also remember that they can sometimes secrete large amounts of hormones (mainly serotonin) – see blog: http://wp.me/p4AplF-3t and: http://wp.me/p4AplF-6c and: http://wp.me/p4AplF-9R. This is because they develop from cells that produce these hormones, so the tumours can also produce hormones and cause serious illness (this is normally known as a ‘functioning’ tumour).  Those who are destined to become top of the class in the summer exam will also remember that a drug known as a Somatostatin Analogue is used to treat Neuroendocrine Cancer patients.  This man-made drug mimics a naturally occurring hormone which Neuroendocrine tumours often absorb.  There are mainly two versions of this drug in use – ‘Octreotide’ and ‘Lanreotide’.   Octreotide is the one used for the scan thus its name ‘Octreotide Scan’ but it’s generally known as Somatostatin Receptor Scintigraphy (SRS).

Although the treatment aspect of this drug is to block/control the release of excess hormones and thus prevent serious illnesses, the job of the drug when used to support the radioactive scan is to guide the radioactivity to the tumour locations. This is achieved by using an amount of Octreotide ‘labelled’ with a mildly radioactive ‘tracer’ to make it show up on a radioactive scan. The radioactive labelled Octreotide is injected into the bloodstream and taken up by the Neuroendocrine Tumours wherever they are.  After allowing a few hours for the ‘mix’ to bind with all functioning tumours, a scanner with multiple gamma cameras (a gamma camera picks up radioactivity), is then used to take 360 degree 3D pictures of my whole body.  It is much more efficient than conventional scans (CT/MRI) at locating functioning tumours.  This is my third Octreotide scan, the first two were completed as part of my initial diagnosis and post surgical follow-up.  This event is a surveillance check plus post treatment follow-up and is done over 3 days.  Day 1 is now complete with the injection of the radioactive/Octreotide mix and the first scan. I may blog again about this later in the week.  Please see a picture of a nuclear scanning equipment below:

Gamma Camera Scanner
Gamma Camera Scanner

Ronny

Follow me on Twitter:  @ronnyallan1

 

 

 

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

 

 

 

 

 

So what next?

20140528_124222 (3)
Wet but happy!

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 have been worse but it also could have been better – particularly in the hilly middle sections.

Despite the rain, the middle section which we tackled on days 3 and 4 of our challenge, was absolutely stunning to the point that a return visit might be on the cards.  Returning as tourists of course 🙂

Could we have done it quicker?  Chris and I disagree on this one but my personal view is we could have condensed it into 5 days by taking some risks.  That said, I take my hat off to anyone whatever age or physical condition who does this in less than 6 days.

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

——————————————————————————————-

So what next?  Some people have already suggested other walks and I really do fancy another challenge but I need to think hard about my capabilities.  One of my personal aims was to see what my body was capable of after 4 years of treatment for Neuroendocrine Cancer and I suspect the answer is a positive one.  Watch this space.

One thing I will be doing is keeping up my blog but perhaps only weekly and/or ad hoc.  I saw some interesting stuff on the trail, met some interesting people; and was able to give some thought about the effort of blog writing and the potential audience of patients and non-patients.  I’m heartened by the fact that the feedback was good and people are still reading last month’s blogs today, so I guess there’s a demand.  I’m working on the following blog posts which I’ll publish in due course:

  • Beyond the Wall – a continuation of what next but an additional Game of Thrones angle plus a Scottish twist.
  • The Size of the Lambs – observations and banter from the walk.
  • Things are not always what they seem – about an autistic person I met during the walk but with an additional spin on cancer symptoms.
  • Results are all that matter – some world cup banter and my consultant appointment on 18 Jun (results time!)
  • My stomach cramps my style – risk management of certain cancer and treatment side effects
  • A ‘Highland Coup’ – a twist of words bringing back some memories plus an interesting story of a B&B stay.

Ronny