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”.
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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
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
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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 🙂
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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!
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
- Echocardiogram: http://wp.me/p4AplF-2e
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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:
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