The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway. We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun – see picture above which was taken from our room. It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born.
Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it’s flat but the first half is a wonderful mix of colour and open greenery much of it along the River Eden. The second half was interesting as there’s quite a lot of history (Scotland vs England battles past) and of course the excitement of finishing the walk. There’s a 3 mile straight stretch of military road when the Solway Firth initially comes into view. As you can actually see the road disappearing into the horizon, it’s mentally punishing. Moreover, whilst it seems like the walk is coming to an end at this point, there’s still 90 minutes of solid walking ahead. There isn’t much actual wall on display but there is strong evidence of its location, particularly on the 3 mile section of straight road.
My feet have survived today but my knee only lasted 1 hour this morning before painkillers were required. Chris suffered with her toe blister which is now the size of Africa.
We went straight to the ‘only pub in the village’ where we had a celebratory ‘pint’. Now relaxing in our room looking at Scotland (see lead picture).
We enjoyed Hadrian’s Wall but will be glad to be home again after 6 days! We collected £4000 for Planets Cancer Charity but this challenge was so much more than that – it was one of a number of Turning Points in my quest for a decent quality of life and a positive outlook for the future while living with and beyond cancer. It also created my blog site which is still here today!
When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA – Patient Controlled Analgesia. Basically I could click a button whenever I felt the post surgical pain was too much. As this administered morphine, safeguards were built in – for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn’t accept a request for another 5 minutes. That handheld push button device was never far away from my hands!
I could have done with it today. Yesterday I felt my right knee going downhill but some ‘deep heat’ seemed to do the trick during the walk. However, 1 hour into the walk today, I felt it degrade to the point I was limping badly with still over 10 miles to go. More deep heat and a couple of paracetamols taken. A couple of miles later, I was OK and back to normal pace.
Today’s route was mainly on fairly gentle ground all the way to Carlisle and the sun came out for the second half (welcome back Mr S, not seen you since Newcastle). Didn’t see very much wall but clear evidence of where it was including the ‘Vallum’ or ditch. Bit more built up than the middle section, so we passed a lot more small groups of houses. Many of the older ones were built with large redstone blocks – a story for another day.
Final today tomorrow, 15 miles down to Bowness-on-Solway for a pint! Only 1 though.
Tune in for some pictures of ‘God’s Country’ over the Firth 🙂
That was a long day and a hard walk! Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex Army colleague, Jim Waterson. Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84. Usual banter all day brought back more memories and news about some old mutual friends. Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.
The route was a mixture of hilly crags and rolling fields as we entered Cumbria. There were some marvellous sections of original wall and a few interesting spots which are probably worth a revisit to spend more time looking around. Some photos attached.
However, today has taken its toll on our legs. Jim said we would all be doing ‘Douglas Bader’ impressions later, he’s not wrong! I’ve developed a right knee problem which made the last 5 miles uncomfortable. Painkillers might be required tomorrow. Despite the minor pain, my blisters appear intact but only due to the pads applied yesterday. Chris has a blister on her left big toe which has its own postcode.
Interestingly we’re staying round the corner from Lanercost Priory where, in 1306-07, King Edward 1st (long shanks) convalesced for 6 months with dysentry. Mel Gibson would have been happy with this 🙂
We met some interesting and friendly people in our digs tonight including 2 mad Ozzie ladies! They expressed some interest in my blog so thought I’d give them a mention……. hi Sheila and Sheila 🙂
Tomorrow we head off from the wall down to Carlisle which is mainly flat, probably a good thing given my knee problem.
Chris and I adopted the famous military ‘buddy buddy’ system this morning by checking each other’s feet and applying blister pads. We then set off on a hilly section with some spectacular scenery. But first we collected our friend Dave Taylor who was walking this tough section with us.
The forecast rain didn’t arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers. Pretty rough underfoot with plenty mud and damp grass. Stonework was in some places dangerously slippy. I fell once, fortunately I managed to miss landing on the ubiquitous sheep droppings!
Some of the scenery was absolutely outstanding but the weather was not too good for photography. For much of this section the wall is routed along a ridge and goes up and down, up and down, up and down (you get the message!). There were fantastic views both sides of the wall, this section must have been easy to defend, the drop facing north was almost vertical in some places.
Dave Taylor was excellent company today and once we had finished swapping ‘war stories’, we started jointly reciting the words of Life of Brian followed swiftly by The Holy Grail, both Monty Python classics.
Had two interesting phone calls today. First was from Hope FM in Bournemouth where I did a 10 minute live on air call as a follow-up to my 1 hour session in April.
The second call was a Consultant appointment for one of my routine tests asking if I could make it this morning as a slot had become available at short notice. I took great delight in letting the secretary know I was on Hadrian’s Wall and wouldn’t therefore be able to attend!
Looking forward to tomorrow’s equally tough walk with Jim Waterson.
Some photos attached, hope they come out OK.
We’ve seen £200 donated in the last 24 hours which is excellent news but our target is still not met. Please see our donation site at http://uk.virginmoneygiving.com/team/planets7
You can also donate by text. Enter PLAN84 £10 to 70070, this is free and you can also use gift aid by following the instructions. Smaller amounts are possible, simply replace £10 with £1, £2, £3, £4, £5
We must have been doing a blistering pace today! Four of them – I claim 3 and Chris has one. Nothing spectacular but a discomfort we could do without. Blister kit has been deployed and resupply to see us through the week will RV with us on Day 4 at Steel Rigg (cheers Jim W). In hindsight I should have deployed the blister kit last night as I had a feeling my tender feet would be even more tender by end of play today. Four months of training and not a blister between us!
When we set off from our farmhouse (Ironsign), it was overcast but dry, perfect walking weather. We had been told to expect rain in the afternoon but it just got sunnier and hotter throughout the day.
We saw some wonderful scenery today but we know the best is yet to come with the hillier day 3 and day 4 legs. However today we started to pick up signs the Romans had been here with various bits of wall including some which had been relocated and turned into a house (neat trick!).
We walked nearly all day on the ‘Barbarian’ side of the wall and not a blue painted warrior with a Mexican moustache in sight! A bit boggy in places though so our footwear took a pounding (along with our legs). My hips were sore after day 1 but OK today. Chris is OK.
I attached some photos above. One is PLANETS Charity ‘silicone selfie’ on a real piece of the Wall. Another is a side angle of the same piece of wall. This is an interesting stretch as it represents a significant design change where the wall reduces from a 10 foot width to 8 foot and continues as 8 foot to the western most edge. The old ‘Time, Cost, Quality’ triangle springs to mind!
What a piece of engineering this must have been in those days.
Also attached is a picture of a building mainly constructed from wall stones – an example of the desecration of the Wall before Mr John Clayton (powerful landowner) stopped it realising the historical significance was being destroyed.
We meet up with Dave Taylor tonight and are very grateful to him for finding the time to walk with us on day 3. We will be covering some of the most spectacular scenery including the famous fort at Housesteads. Change of terrain too, a bit hillier!
First day under our belts but it wasn’t easy. We always knew it would be an odd walk with the first two thirds in urban environments. The first third of the route took us from Segedumun Fort, the official start/end of the wall walk in the east. There is evidence of Newcastle’s previous and declining shipping industry all the way along the Tyne. The second third took us through modern Newcastle including impressive views of the Sage and Baltic Arts Centres on the opposite bank and the iconic Tyne Bridge which we walked under. Quite a lot of riverside flats on show, some with nice looking views.
The final third takes you to the outskirts and out into the countryside. We were able to see Heddon-on-the-Wall on top of a ridge to our right indicating we would be climbing at some point and the eventual climb was more severe than I imagined! However when we got into the village, we had a well deserved drink. It was here we said goodbye to our friend Nick Naylor who had walked with us all the way. Nick was a work colleague from 1995-96 and also a close neighbour. We very much appreciated Nick’s company and it was fantastic of him to give up his bank holiday. What a nice guy!
We then set off to find our lodgings which was a further 2 (hard) miles down the route which runs parallel with the ‘Military Road’ (B6318). Had to sniff out the wifi though, only works in certain places.
I think Chris has completed the day in a better condition than me, I’m feeling pretty sore and stiff. Hopefully I’ll be able to walk off these problems tomorrow. Looking forward to meeting up with Dave Taylor tomorrow night ready for Day 3.
Hopefully will be able to update you all again tomorrow (depends on good access to wifi!).
There’s been a lot in my blogs about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it’s possible the patient would potentially have a much poorer quality of life.
I’ve had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I’m in a much better place than I was nearly 8 years ago but I have a lot of people to thank for some excellent progress. My son & daughter’s families have all been there for me and although my 4 grandsons don’t quite understand the situation, their presence in my life is a great tonic.
Perhaps even more focus should be given to those who are supporting, living with and in many cases, caring for cancer patients 24/7 – often routinely taken for granted. In particular, I’d like to focus on my wife Chris who has actually been at my side for most of my adult life. She was there when I received the bad news and she helped me break this news to others. She was the first person I saw when I woke up after major surgery. Over the last 8 years since diagnosis, she’s been watching over me when I’m not quite 100%. She was singularly responsible for getting me fit enough to be able to fulfil a long-term ambition to walk the entire 84 miles of 2000 year old Hadrian’s Wall in 2014 and she walked every single mile with me. I recently wanted to walk up a very big hill in Wales and she was there too (see photos).
I love watching films and Tom Hanks is one of my favourite actors. He’s played such a wide range of parts and I’ve found every single one of his films enjoyable. I think the first one I remember was ‘Big’ – a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go! On the opposite side of the scale, he’s also played in some quite gory films such as ‘Saving Private Ryan’ – the first 20 minutes sure tested out my surround sound and subwoofer! However, one of my firm favourites is Forrest Gump. A multi-decade spectacular, amazing acting, amazing locations, amazing visual effects where they depict Forrest Gump meeting dead US Presidents. Anybody else got a picture of themselves sitting on the Forrest Gump bench with their feet in the shoes? One of the most famous quotes from the film is the ‘but-tocks’ scene but don’t worry, I’m not going to show you mine like Forrest did with President Lyndon B Johnson 🙂
I actually did get a ‘shot’ in my buttocks this morning, as I do every 4 weeks. This is a fairly standard treatment for Neuroendocrine Cancer patients who presented with ‘Carcinoid Syndrome’, although I suspect some non-syndromic patients might also be receiving this treatment. As a reminder, the incidence of Neuroendocrine Cancer is rare. Although Carcinoid is the most common type of Neuroendocrine Cancer, it is therefore also rare. Statistics vary but it would appear Carcinoid Syndrome only effects 10% of those with this type of cancer, so NET Carcinoid Patients with the syndrome are particularly rare. The main side effect of the syndrome for me was facial flushing. That was on my side as it made the diagnosis easier. I’ve discussed this treatment a few times but see here for more detail: http://wp.me/p4AplF-2w
Currently I don’t appear to suffer any major side effects of Carcinoid Syndrome and am classed as stable and non-syndromic. However, that is probably as a result of my debulking surgery and the administration of Lanreotide ‘shot’ every 4 weeks. I also think my progress is helped by my recent exercising regime – see a blog here for more details: http://wp.me/p4AplF-2e
That’s all I have to say about that 🙂
(my own views or my own interpretation from online documentation)
One of the reasons I’m fundraising for PLANETS Charity is to support the acquisition of something known as IntraOperative Radiation Therapy (IORT). This is an intensive radiation treatment that’s administered during surgery. IORT is used to treat cancers that are difficult to remove during surgery and there is a concern that microscopic amounts of cancer may remain. IORT allows direct radiation to the target area while sparing normal surrounding tissue. Many of the cancers supported by PLANETS present with some difficult tumour areas.
IORT allows higher effective doses of radiation to be used compared to conventional radiation therapy. It’s not always possible to use very high doses during conventional radiation therapy, since sensitive organs could be nearby. IORT also allows doctors to temporarily move nearby organs or shield them from radiation exposure.
There are plans to install a fixed IORT in a new bunker theatre in Southampton, due to be built in 2016-17 (using NHS funding). However, PLANETS is trying to kick-start this project in advance on a mobile IORT radiotherapy machine. The possibility of leasing a machine using PLANETS funding as an initial income guarantee is being considered by exploring the logistics of this service and developing a business case with a view to starting within 2014-15. This would enable medical teams to give radio-therapy to patients in theatre immediately after removing their tumours to reduce the risk of them coming back, by killing any remaining cancer cells. This is likely to be one of the very first deployments of this technology in the UK.
Read about other exciting developments and events here: www.planetscharity.org
See you tomorrow?
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One of the most interesting statistics in my blog app is the total number of views recorded each day. It even breaks the total down into which posts were most viewed and which countries the viewers were from (but please note it does not identify the name or any other details of viewers). I’m always very pleased to have readers from overseas locations – I hope they enjoy reading my blog and find it useful. To date, these include readers from USA, Australia, Canada, New Zealand, Barbados, Belize, France, Germany, Switzerland, Belgium, Netherlands, Luxembourg, Portugal, Austria, UAE, Bahrain, Philippines, Nigeria, Kenya, Croatia, Ireland, Sweden, Italy, Japan, Czech Republic.
Neuroendocrine Cancer is not unique to UK, it’s an International disease. If you research, you will find Neuroendocrine Support groups in most countries.
There are also international medical groupings who collaborate with each other and with industry to discover new treatments and suggest new standards for care. In the UK (and Ireland) there is the UK and Ireland Neuroendocrine Tumour Society (UKI NETS and they will liaise closely with their counterparts in the European Neuroendocrine Tumor Society (ENETS). I find the technical documentation from these organisations quite useful.
Our friends in USA have the biggest organisations and I very much like the Carcinoid Cancer Foundation http://www.carcinoid.org/ which I use regularly. They just shared a very good video today on Twitter which I’m embedding here, I hope you can find the time to watch it? http://www.youtube.com/watch?v=9U6q78a1xaQ
At the support level, the International Neuroendocrine Cancer Alliance is the global voice in support of neuroendocrine cancer patients http://netcancerday.org/ I mentioned above that there are support groups from many countries – you can see a list here http://netcancerday.org/about/world-net-community-directory. Every year on NET Cancer day – 10 Nov, their voice gets louder in support of Neuroendocrine patients. Make a note in your calendar – I’ll be having a coffee and cake morning at home and I might even invite some of you ……. 🙂
I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Suttonpassed away. I didn’t really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it’s one of the primary aims of my blog. I’m thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers.
In the past week, the newspapers have published several follow up articles on the Stephen Sutton story providing examples of patients who had been misdiagnosed only to end up finding they have a cancer which is not now curable. Neuroendocrine tumours can present complex challenges to diagnosis and treatment. Even in the case of metastatic spread, there are some important differences in the nature of these tumours compared to other cancers found in the same part of the anatomy (e.g. the pancreas). If you were to search Neuroendocrine tumour support organisations’ forum groups and websites, you will find numerous stories of people of all ages being diagnosed with a whole bunch of ailments before they were finally diagnosed with some form of Neuroendocrine disease.
Some people with Neuroendocrine cancer 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). It can also be found during diagnosis of something which the cancer would not otherwise be able to be seen, for example 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).
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. 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 about my cancer diagnosis experience, check this blog:Diagnosis
However, 18 months prior to that I did go and see my GP saying that I had noticed a darkening of my stool. After a quick ‘rummage’ nothing untoward was reported in the ‘extremities’ but I was sent to see a specialist as a precaution and probably because of my age. I eventually had a colonoscopy and for good luck, an endoscopy. Again nothing untoward reported other than a mild case of diverticular disease which apparently 50% of people over 50 have (filed!). In any case, the stool had returned to normal by this stage. I now know that my primary tumour, even if it was visible, was beyond the range of the colonoscopy procedure and I also now know that my tumours had been slowly growing inside me for some years. However, given the nature of Neuroendocrine tumours, I wonder what might have transpired had I been given a CT scan at that point? But there was no clinical evidence to support such an expensive procedure. After all, I didn’t look ill, I didn’t feel ill.
So what is my bottom line on this story? Cancer diagnosis can be complex, some cancers more complex than others. I often think the whole population should be regularly scanned and have blood tests but that would be cost prohibitive not to mention logistically challenging. I’m sure there are mistakes being made and lessons learned are very important. However, I do believe these cases are in the minority. Putting prevention and research into cures to one side, AWARENESS is key and I mean awareness by the population as well as medical staff. One way to increase awareness is for people to talk about their experiences.
Thanks for reading
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Only a week left until Chris and I set off on our 84 mile trek across Hadrian’s Wall in the North of England. We’ve been training for this since January 2014 and probably covered sufficient distance to have walked the wall 5 times over! Didn’t stop us going for a fast short walk this morning and despite the heat there was no sweat. I think we’re ready 🙂
For the last few days we’ve been thinking it might be tougher if this heat continues. Only a month ago, we were saying it might be tougher with all the rain we were having! We had a few occasions where we got wet but we just had to get on with it – fortunately our back packs contain the ‘full monty’ of wet weather clothing – so we’re prepared for all eventualities.
It did bring back some memories for me though as in a past life, I’ve had to do quite a bit of activity in the pouring rain! In fact daft as it seems, there is lot to say about military phrases such as ‘If it isn’t raining, then it isn’t training’. If it rains each day during our walk, it won’t seem so bad if we had encountered this during our training. Ditto with heat I suppose! Do I have a preference? If you push me, I’ll go for heat!
On the subject of military training, I just had lunch with 2 very old friends who were on a long specialist training course with me in 1983/84. We had a really good laugh – some of it at our own expense. We chatted through some famous (and infamous) incidents which mostly occurred during training. We decided life is too short and will be meeting up again and trying to widen the attendance to others.
I’ve had good feedback from people saying they do enjoy reading this section of the blog as I try to make it as simple as possible to understand. However, don’t forget, these are my own views and/or my own interpretation of Geekie stuff. See my home page for an amplification of this (click on Home at the top of the blog).
An abnormal mass of tissue that results when the growth of cells exceeds, and is uncoordinated with, that of normal tissues around it. Tumours can be benign (not cancerous) or malignant (cancerous). Tumours are also sometimes known as ‘neoplasms’. If you wanted to know more about how malignant cancer develops, I found the Cancer Research UK site quite good as it includes short videos, see here: http://www.cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/ This really is the ‘geekiest’ of subjects!
Trans-Arterial Chemo Embolisation (TACE)
I blogged about Embolisation here: http://wp.me/p4AplF-2e. TACE is a type of embolisation where they add chemotherapy to the mix. In doing so, it provides a targeted and additional punch in the nose to liver tumours. I was scheduled to receive one of these but it had to be curtailed as some post surgical changes were interfering with the normal routes to the liver and it was aborted due to the risk. The possibility of further embolisations has not been discounted but the operation would be trickier. This isn’t on the horizon so I guess my remnant liver tumours are behaving 🙂
Chris and I must like it there as we’ve been about 4 times and we’re going back this year! I always feel much better out there and I sometimes even have a beer – rock and roll 🙂
See you tomorrow
Feedback and/or comments very welcome.
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Most of us will have experienced the ubiquitous quotations that somehow manage to go viral around Facebook and emails? Mother, Father, Son, Daughter, Grandson, Granddaughter etc. I instinctively want to share those and like the post but something nearly always prevents me from doing so. I suspect there is something in me that says “don’t follow the crowd” or perhaps I’m just a shy private person at heart? (I can hear some of you laughing …..). However, today, I’m publishing the fact that grandchildren are indeed wonderful! So what has brought on this sudden emotional outburst?
I have 4 grandsons, 2 each from my son and daughter, aided and abetted by my daughter-in-law and son-in-law respectively! I never tire of seeing them although I will admit to a sigh of relief sometimes when we ‘hand them back’ 🙂
The youngest Charlie is just almost 5 years old and he is a real handful…..but funny with it. Thomas is just over 8 and a bit of a comic. He appears to be very interested in wildlife. It amazes me that he is able to identify and pronounce the names of many insects and “mini-beasts”. He’s recently taken up football in a serious way.
Sam aged 11 never ceases to amaze me with his forthright views but you can often pick up his soft side just by listening carefully to him. Ben at 13 is the oldest and is really into football (and I mean 24/7!). He is goalkeeper for the U14 AFC Bournemouth Academy (English Premier League team). Well done Ben, your hard work has paid off 🙂
Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me! However, you need to be very careful in acceptance of what is credible information and what isn’t.
As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my aches, pains and unusual feelings. I mostly find there are no real or definitive answers online for my issues. Although I seem to learn something on each piece of research, I also find some really worrying stuff.
On my most recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby!
The internet is really powerful but also really dangerous. For example if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits. Worried patients sometimes need help to distinguish between sensible advice and fanciful claims.
When I combine my own experience with what I read on patient forums, I can see that internet searching is not for the faint of heart. Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse. In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet – ‘Cyberchondriac’.
Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers! Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients. It’s how we as patients exploit it that is really important. Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office. Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.
The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship.
Tips for online searching:
1. Don’t actually use internet search engines if you can help it, go to a reputable site and then search that.
2. Try to be specific as possible because vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.
3. Less common conditions are less common, and minor symptoms often resolve themselves in time. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help.
5. If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable. However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas.
6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status, so be careful. Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening’. Personally, I never compare myself to strangers on the internet.
When I was a young lad, I was fascinated by Astronomy. Not only could I tell you the name of each Planet in order of distance from the sun, but also the actual distance! In those days, space travel was really taking off culminating in the first manned moon landing in 1969. I remember staying up all night with my dad so I could watch it on TV (in black and white of course). The talk then was of where next, Mars? After all this time, we still haven’t landed people on that Planet – just shows you the complexity of such missions (and cost of course). Nobody ever expected to find life on the moon but the excitement about finding life outside earth was as exciting then as it is now.
I just googled the manned moon landing to make sure I got the year correct for the blog and sure enough the internet delivered once again. I also got carried away and started researching all the Planets in our Solar System. Interestingly, one of my searches uncovered the fact that Pluto is no longer considered a proper Planet (nobody told me!). However, my searches also uncovered that Pluto has been replaced by a young stellar object called Pancreatic, Liver and Neuroendocrine Tumours(PLANETS).
It’s no secret that I’m now closely involved with PLANETS and I can confirm there is definitely life on it! I’m delighted be part of the team and I really want to help them achieve their goals and mission. I won’t regurgitate the content of previous blogs here but please browse through their website starting from this page which is a good primer:
If you want to receive our newsletter, please fill in the short form. This is for patients, patient supporters or general supporters alike.
Can I also ask you to go to their Facebook page and click on ‘LIKE’ https://www.facebook.com/pages/PLANETS-Charity/122088044556397?fref=ts
500 likes by end of play today please 🙂
For those who are Twitter powered, you can follow us here:
Finally, as you know Chris (Princess Fiona) and I (Shrek) are fundraising for PLANETS by walking Hadrian’s Wall starting on 26 May 14. It would be fantastic if you could contribute to our cause, any amount would be very much appreciated. http://uk.virginmoneygiving.com/team/PLANETS7
Many thanks for supporting my blog, suggestions for future blogs welcome. Please share, like, follow, comment.
I was looking through some old photographs yesterday and came across this one which I thought you guys might like. As you can see, despite being an ogre, Shrek is actually quite a handsome chap 🙂 However, more to the point, Princess Fiona is as you would expect, beautiful and radiant. There’s a bit of a story behind this picture as Chris was in fact not very well at the time.
This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris’s brother Gerry (a mad ex paratrooper) and his lovely wife Babs. Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit peaky on the plane. Despite a $600 antibiotic ‘shot’ in the jacksie, she spent the first couple of days in bed and was still not right when we drove from there to Yosemite; and then onto Death Valley and Vegas. She was actually starting to perk up by the time we got to LA but still looked weak and pale. Fortunately the photographer was able to put some colour in her cheeks and as you can also see, was able to put some flesh onto mine 🙂 Joking aside, looking at some of the other pictures from that period, I was certainly a bit ‘chubbier’ than I am now.
I could write a book on that holiday, there were so many ‘incidents’ and laughs (might use some of them for post walk blogs). Chris and I intend to repeat some parts of this holiday in the very near future – it’s such a fantastic place.
Some ‘P’ words for the medical geeks 🙂 (ha ha takes one to know one…but feedback indicates you like these)
A few weeks after being released from hospital following my big surgery in Nov 2010, I was ‘summoned’ to Bournemouth Hospital to RV with my Nurse having been informed ‘pulmonary emboli‘ had been spotted on my right lung following a scan. She gave me a pack of blood thinning injections and demonstrated how to self inject. I remember not thinking much about it but when I got home, I decided to study it carefully (as Ronny Allan does….). My study revealed some ‘frightening’ stuff and so very thankful this was spotted when it was. My Oncologist had initially prescribed the injections for 6 months, however, I’m still taking them today more than 3 years later. Not complaining as it’s a necessary evil. My stomach is sometimes covered in small yellow and purple bruises which provides a talking point whenever I have to take my shirt off at the GP or Hospital. The ‘my wife’s a husband beater‘ joke is now wearing a bit thin….. 🙂
Today I will inject for the 1218th time! I will be injecting myself daily during the walk.
Primary Neuroendocrine Tumours can be notoriously small. Despite this they can still do a lot of damage! Some Neuroendocrine Cancer patients have an unknown primary site (10% ish). Mine was located as a ‘mass’ in the terminal ileum, the most distal part of the small intestine where it connects to the cecum, the pouch between the small and the first part of the large intestine (ascending colon), via the ileococal valve. All of these bits were removed ‘en bloc’ due to extensive mesenteric disease. The appendix hangs off the cecum so I can now say I’ve had my appendix out too! The appendix is actually a fairly common place for a Neuroendocrine tumour – it is in fact the second most common disease of the appendix (clearly appendicitis is top). You can find out more about these aspects of my treatment by reading here:
I thought long and hard about today’s post because no matter what I say, it will pale into insignificance when put alongside the words of Stephen Sutton who sadly died today at the tender age of 19. The words used by his mother are particularly powerful. He was certainly a courageous, selfless and inspiring man.
However, although he successfully raised £3.2million for Teenage Cancer Trust – a phenomenal amount for a very worthy charity, I believe Stephen also leaves behind many other very valuable legacies and lessons. I’d like to focus on two in particular.
This is one of the key technical innovations of the last 20 years and has changed the way in which society lives and communicates and it’s still evolving. It has altered the way ideas change hands and how fast those ideas spread – seconds rather than days or weeks. It’s a very powerful tool which can send messages to those who lead and govern us. In my opinion, this has actually been good for democracy (people power) – which is why certain countries (no names no pack drill) fear the rise of social media because it removes their ability to control information and views.
However, it can also be abused by those who take advantage of these freedoms for their own selfish, uncaring and nasty minded purposes. Stephen was abused ‘electronically’ when he entered a short period of better health and certain people with very narrow minds decided to cowardly suggest (without checking the facts) that they had been duped.
When I published my ‘A’ letter blog, Chris reminded me that I had originally listed ‘Awareness’ as a candidate for blogging – after all, this is one of the two aims of our sponsored activity. I knew there would be an opportunity downstream and having just read Stephen’s whole story, I decided to raise it today.
Stephen was diagnosed with metastatic bowel cancer at the age of 15. He had been suffering sickness, stomach pains, weight loss and a loss of appetite but was repeatedly told by doctors he had constipation. Tragically, it was six months before Stephen’s cancer was finally discovered. It was only picked up after an emergency CT scan when he became so ill he couldn’t keep down any food or fluids and he couldn’t sleep because of the pain. He believed that if he had been diagnosed sooner, his prognosis might have been very different although he went on to say ‘But even saying that, I’m not one to dwell on the past. It is what it is.’ I’m in no way having a ‘pop’ at Stephen’s doctors as I think there is a lot of detail behind the scenes and nobody knows the full facts. I actually think medical staff are on a ‘hiding to nothing’ nowadays.
Awareness is also germane to Neuroendocrine Cancer which is infamous for being misdiagnosed due to the vagueness of some of the symptoms it can cause and produce. The Neuroendocrine Cancer community has a motto “If you don’t suspect it, you can’t detect it“. So my message to you is this – if you feel unwell, make sure you divulge all the facts to your GP or attending physician. If you end up being diagnosed with something minor but you still feel there might be something seriously wrong, go back and then go back again – or ask for a second opinion.
I leave you with a listing of a couple of ‘O’ words which are significant for Neuroendocrine Cancer.
One of the major advances in the treatment of Neuroendocrine Cancer in the past 10 years is the introduction of ‘Somatostatin Analogues’. These are synthetic (man-made) drugs which mimic the behaviour of somatostatin, a naturally occurring inhibitory hormone which blocks the release of several other hormones, which in excess, can cause unwanted side effects and in particular scenarios, can potentially be damaging and life threatening. I’m actually treated by a variant of this drug called Lanreotide. I’ve referred to this on a number of occasions – see:
‘Does my flush beat yours‘ http://wp.me/p4AplF-2w
‘My treatment is a pain in the butt‘ http://wp.me/p4AplF-6c
The long acting versions of this type of drug (normally 4 week intervals) now have an established place in the medical treatment of patients with neuroendocrine tumours. These drugs have made a significant difference to the outcomes for Neuroendocrine Cancer patients in terms of quality and extent of life. There is some build up of evidence to suggest these drugs also have an ‘anti-tumour’ effect (i.e. they stunt or reverse tumour growth) but I do not believe there are any widely recognised scientific claims yet published.
This is a gamma camera type scan where Octreotide is mixed (radio labelled) with a very low dose radioactive material (normally Indium-111). Somatostatin analogues will ‘bind’ to neuroendocrine tumours releasing excess hormones. If you then combine the drug with radioactivity and take a picture using a gamma camera, this can detect functioning tumours that might not otherwise be spotted. Seemples! This is actually how they found the tumours in my left armpit (axillary lymph nodes) and left collar-bone (supraclavicular fossa lymph nodes).
They inject the drug/radioactive mix on the morning of day 1 and then they scan you each day for 3 days (day 1, 2 and 3). The bench you lie face up on is quite narrow and you need to remain still. The gamma camera rotates around your body in a circle moving up or down after each trip. The radiographers will also try to overlay the scan output onto CT scan pictures to compare and cross reference potential tumour sites. For the patient, it’s the most boring scan ever……but very clever and very important.
Sorry it’s a bit lengthy today. However, if you like it, please feel free to share. As usual comments also welcome.
There was a 60 minute silence last night as another episode of Game of Thrones was aired. Not a Facebook post or tweet in sight. This has to be ‘up there’ in a list of the best TV series ever? Don’t know about you but I’m sometimes confused about who is who and how they are related and/or connected! (see useful chart at the bottom of this post)
Chris and I love the introduction bit. She likes the music, I like the geography. There are some obvious correlations there, e.g. ‘The Wall’ is meant to relate to Hadrian’s Wall with those horrible barbarian Scots to the north 🙂 Thank God Hadrian’s Wall and the climate in particular, isn’t as bad as portrayed on GOT!
I did contemplate using ‘trousers’ as the theme of today’s blog following some interesting banter on my Facebook page. The debate centred on the type of causal clothing one should wear if one is of a certain age. Most of the debaters were ex-military which made for some interesting input followed by even more interesting output! Anyway…. having recently reduced from a 32″ to a 30″ waist, I made the trip down town today to buy some new jeans and came back with nothing, the ones I really liked seemed to either start at 32″ waist or did not include a short leg option.
However, Chris and I did manage to pick up two suitcase bargains in the Debenhams sale. For the last 6 holidays we have been enviously watching all those flash people with their ‘push along’ suitcases whilst we huff and puff behind them with our 1980s luggage. ‘Roll on’ Gatwick next month!
I’ve skipped a couple of days worth of A to Z terms so need to catch up. Read on as I know from feedback that quite a lot of you guys enjoy my ‘layperson’ explanations of complex medical stuff! Two important ‘techy’ bits here to cover the ‘M’ and ‘N’ components of my A to Z.
In a nutshell, Metastatic cancer is a cancer that has spread from the part of the body where it started (the primary site) to other parts of the body. When cancer cells break away from a tumour, they can travel to other areas of the body through the bloodstream or the lymph system. The spread of a cancer is often described in terms of a ‘stage’. This shouldn’t be confused with ‘grade’ which is normally how aggressive a cancer is – I talked about this in my blog of 11 May. Staging and Grading for Neuroendocrine Cancer can be complex and there doesn’t appear to be a standard that all NET centres adhere to. There is a complex grading system proposed for Neuroendocrine Cancer known as TNM (Tumour, Node, Metastasis) but mostly it’s still referenced by the simple Stage 0 to IV (0 to 4) model. For some types of Neuroendocrine Cancer there appears to be an even simpler model of ‘Local’, ‘Regional’ and ‘Metastatic’. My stage is ‘Metastatic’, Stage IV or TNM – T4N2M1 depending on which one is being used.
Appears to be pronounced ‘….crin’ which was a revelation for me after 12 months! I had never heard of this word until it had been imprinted all over my internal workings! It’s amazing how much of the human body we take for granted. The neuroendocrine system is made up of the nervous system and the endocrine system. The systems work together to keep your body functioning regularly. Neuroendocrine describes certain cells that release hormones into the blood in response to stimulation of the nervous system; i.e.
Your brain sends signals to your nervous system that control various body functions
Some messages are sent to the glands of the endocrine system. These include the pancreas, hypothalamus, thyroid and parathyroid, pituitary gland, adrenal glands, ovaries, and testes.
These glands release hormones that control important body functions, such as growth, metabolism, reproduction, and response to stress or injury.
Sometimes neuroendocrine cells can become cancerous and in certain types (mainly Carcinoid), it can result in the neuroendocrine system secreting excess hormones which will create dangerous problems for sufferers. This is one of the reasons I now avoid alcohol, very large meals, certain types of food and stress…….. so if you’re out for a meal with me and you notice the bill is exorbitant, don’t let me see it 🙂
I went on to produce a blog explaining the word ‘Neuroendocrine’ to laypersons – you can read this here: CLICK
Don’t forget to check out the GOT chart below!
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I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should’ve seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that.
You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP’s Surgery in May 2010, see blog post ‘Diagnosis – I’m no longer in control’. That nurse was professional, thorough and she clearly went the extra mile for her patients. She has my eternal thanks for sending me down a different path in the game of chance that is life. I often wonder where I would be now had she not ordered the ‘just to be sure’ blood test that ended up being the trigger for my eventual diagnosis of metastatic Neuroendocrine Cancer. Perhaps she was the thing between me and a hearse?
Following that episode, I have since met many Nurses (male and female) and my respect for them knows no bounds. I spent around 35 nights in hospital over the period Jul 10 – Feb 12 and most of my memories involve something a nurse has done to help me.
It was a nurse that:
held my hand when I was in real pain and discomfort during a liver biopsy
met me on each hospital stay and put my mind at rest with their caring nature and big smiles
brought me my medicine when it was due 24 hours per day
carried out observations on me when they were due 24 hours per day
washed me when I was in no position to do anything for myself
got me out of bed when I was not able to do it myself
washed my feet and changed my hospital socks when it was still too sore to bend down after surgery
did a hundred other things I could list, some of them not very nice jobs
I still depend on them today! Every 28 days, I rely on them to give me my anti-tumour treatment and my specialist Nurse is always on the end of a phone if I need to speak. And I just love it when I see a specialist or a consultant and there is a Nurse also present. It makes me feel safer, more comfortable and I’m likely to ask more questions.
So – to all nurses out there, a big thanks from the bottom of my heart ♥ Not a hearse in sight!
This header is a bit ‘tongue in cheek’ (….did you see what I did there?) I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Actually, Chemo isn’t particularly effective in treating Neuroendocrine Cancer, although I’ve heard of cases where it has made a difference.
Today’s letter is ‘L’ and there are a few.
This is currently my mainstay treatment and I look forward to it once every 4 weeks. It is injected ‘deep subcutaneous’ in the upper outer quadrant of the buttock.
Prior to my diagnosis, I was a tad squeamish when it came to injections, even the smallest would make me cringe and I couldn’t bear to watch any needle pierce my flesh! Nowadays, as a daily self injector (see earlier blogs), I no longer have a fear of injections. However, the Lanreotide is the biggest injection I’ve ever had. It’s not so much the length but the bore as the drug has a certain viscosity.
The main job of the drug is to inhibit the secretion of dangerous levels of specific hormones from the remaining neuroendocrine tumours, wherever they might be, whatever size they are. For more detail on this see‘Does my flush beat yours’ published on 6 May 14.
Is it a pain in the butt? Not really, you can feel it go in and you can feel the release of the drug but nothing to worry about.
Check out my experiences with Lanreotide here. Check out the differences between Lanreotide and Octreotide here.
One of the main sites for secondary tumours in many cancers is the Liver and this is the case with many types of Neuroendocrine Cancer – if the cancer cells pass into the bloodstream, the liver is a likely place for them to settle. Your liver is the hardest working organ in your body—it acts as a filter, picking up and then removing the toxins from your body and keeping your internal organs running smoothly. If it isn’t working properly, you’re in trouble. Fortunately, liver surgery is an effectively way to debulk NETs
Everybody has hundreds of small oval bodies that contain lymph. Lymph nodes act as our first line of defence against infections and cancer. Unfortunately with cancer, they very often need to be removed to prevent it spreading further. I have had a few naughty ones removed including a chain of bulky ones from my abdominal mesentery and over a dozen from my left armpit and collar-bone areas.
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Through the Keyhole is a Panel Game Show on telly originally hosted by Lloyd Grossman (who?) and then Sir David Frost. It was resurrected last year hosted by Keith Lemon.
Sorry to disappoint you but this blog is about a different type of keyhole. Today I’m on ‘K’ words (I drew a blank on J).
After I had major surgery in Nov 2010, I left the hospital knowing that I’d be returning later for another but I needed to be fit enough first. This took some time but in Apr 2011, I returned for further surgery, this time on my liver to remove several secondary tumours. I was told it would be done using ‘keyhole’ surgery. Fortunately for me, Neil Pearce is one of the world’s most experienced keyhole liver surgeons and has been responsible for training consultant surgeons from every liver unit in the UK in these techniques since 2007. I was in safe hands.
Keyhole or its correct term ‘Laparoscopy’ is a minimally invasive surgical technique allowing a surgeon to access the abdominal area without having to make large incisions in the skin. Interestingly the abdomen is pumped full of gas to give the surgeon space to work. I actually had 3 holes for 3 ‘Labrascopes’ and a 3″ inch incision in my lower abdomen where the ‘bits’ were removed. The surgery removed approximately two-thirds of my liver! It’s difficult to find any scars or marks today. I was home after 6 days and back to work after 3 weeks. The liver is an amazing and important organ and I may cover a section on that later.
All malignant tumours have to be graded (not to be confused with staging which is concerned with spread rather than aggressiveness). There are simple descriptions (e.g. low, medium and high or 1, 2 or 3). All of my biopsies (either diagnostic or post surgical) have been given a Ki-67 score. Ki-67 is a proliferation index that is detected by a process called ‘immunohistochemical staining’ – this is calculated by a Pathologist. When a tumour cell tests positive for Ki-67, the tumour is actively growing. My scores were low but different in each part of the body. My primary actually tested <1 which is very low but preceding that, my liver biopsy during diagnosis was listed as 5+ indicating a medium grade for Neuroendocrine disease. My left armpit nodes tested <5 indicating a low or medium grade.
Some of you may now be noticing I’ve become a bit ‘geekie’ on medical matters. Correct!
If you have any questions about my cancer, how my life has changed, my experience since diagnosis or any tips for dealing with it, then please let me know as this will provide me with ideas for future blogs.
Actually, I’m happy to cover my views on any matter except football, religion or politics!
The is a story about a lady who was faced with one of the most deadly cancers – Pancreatic Cancer, where the 5 year survival rate has not risen for the last 40 years (another story for another time). Young and fit people can struggle with this cancer and its treatment so it must be ultra tough at 83. Her attitude and strength of character in facing up to this terrible disease is very inspiring to me and an example to all.
My own cancer type is not as dangerous as this one. However, I did have some fairly extensive surgery from the same surgeon and reading this story brought back some memories from Nov 2010. Neil Pearce had already told me in the pre operative consultations, that an important factor for him was a positive attitude from the patient to help get through difficult major surgery. I remember telling him I was ‘up for it’. He had also deemed me to be ‘young and fit’. At 55, I was happy with that!
One of the things that really surprised me about major surgery was the speed at which the physiotherapists attempt to get you out of bed. Having around 12 tubes protruding from various parts of my body didn’t seem to put them off despite the obvious medical and ergonomic difficulties. The number of tubes did gradually reduce as certain parts healed and bodily functions resumed. However, each physio session was painful and a lot of effort and willpower was required. I remember not wanting to play this game around day 4 or 5 due to feeling totally washed out (my words to the physio) and I resisted all attempts to ‘go walkies’. Neil visited that evening clearly concerned by the physio’s report. Pep talk complete, he left me with the following words “remember, you’re a winner”. I was up the next day sprinting round the hospital complete with tubes and glad to be back on the physio’s Christmas card list.
I also had a ‘wobble’ last year (another story for another time), but I’m now beyond that stage with a very positive frame of mind………….and I feel much better for it. Onwards and upwards.
So why is the title of the blog “Queen Mother of the Isle of Wight” ? I’m not saying, so please read the article, it might just inspire you too.
………. apart from better sanitation, and medicine, and education, and irrigation, and public health, and roads, and a freshwater system, and baths, and public order ……. 🙂
Well they also left us the outstanding Hadrian’s Wall which is the first topic of today’s blog. In Jan 2014, the oldest piece of paper in my ‘in tray’ was a newspaper article about the World Heritage Site of Hadrian’s Wall – it’s dated 28 Sep 2003. When I read it, I warmed to the idea of doing it but procrastinated for over 10 years. To cut a long story short, Chris and I are going to walk this wall 26 – 31 May to raise funds for PLANETS Charity and to raise awareness of Neuroendocrine Cancer. (After note – we made £4,000).
Hormones are your body’s chemical messengers. They travel in your bloodstream to tissues or organs. They work slowly, over time, and affect many different routine day to day bodily processes. Hormones are powerful. It takes only a tiny amount to cause big changes in cells or even your whole body. That is why too much or too little of a certain hormone can be serious.
Those who read previous blogs will have seen the unusual nature of Neuroendocrine Cancer. Neuroendocrine cells are specialised cells throughout the body that release hormones into the blood when they are stimulated by nerves. Neuroendocrine tumours release excess amounts of hormones which can not only create imbalances in the body’s normal function but they can also go on to cause significant damage. See ‘Does my flush beats yours’ http://wp.me/p4AplF-2w
This is one of a few common sites for a primary Neuroendocrine Tumour and where mine was found. The primary tumour was initially described as a ‘mass’ due to a combination of its size, its encroachment into surrounding tissue and organs/lymph nodes and no doubt some fibrosis thrown in for good measure. This was removed with surgical procedures called a ‘right hemicolectomy’ and a ‘mesenteric root dissection’, followed by a ‘superior mesenteric vein reconstruction’ (the disease was blocking this vein). Thank you Mr Neil Pearce.
Tune in tomorrow for some more updates. If you like this blog, please let me know by doing one or more of the following:
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p.s. all views here are my own and not intended as medical advice.
p.p.s for those who remember or have not viewed the ‘what have the Romans ever done for us’ scene in Life of Brian – here’s a preview.
There’s a few ‘G’ items to talk about so here goes……
There wasn’t really anything wrong with my gallbladder but it had to go. You may have read previously that I receive a monthly injection of a ‘snazzy’ drug which keeps me well. However, long term use of this drug has certain side effects, one being the risk of gallstone formation in up to 50% of cases. Gallstones can not only be very painful but they can potentially be life threatening. On top of what I had already endured, future surgery to treat gallstones or to remove my gallbladder could be riskier than it might normally have been, so it was conveniently removed during a second major operation on my liver (the gallbladder is located very close).
The gallbladder plays an important role in the digestion of food by storing bile produced in the liver until it is needed for digesting fatty foods in the duodenum (the first part of the small intestine). Bile now flows down the bile ducts from my liver into my duodenum. Clearly this isn’t as efficient as using the gallbladder with ‘on-demand’ bile and so produces its own side effects. In my own experience, this can be offset to a certain degree by making minor adjustments to diet.
Gallium PET Scans
One of the difficulties with Neuroendocrine Cancer is actually pinning down the precise location of the tumours as they can be small, they can hide in awkward places and sometimes they can be difficult to display correctly on conventional scanners. Previously the gold standard of scan for Neuroendocrine patients is the ‘Octreotide’ Scan which can ‘light up’ neuroendocrine tumours on a gamma camera. However, the Gallium PET scan, which works in a similar way, is even more sensitive and its better results can affect a doctor’s decisions on how to treat patients. Despite this, there is only one hospital in the UK (in London) which has the license to use it. Please sign this e-petition and share widely to address this lack of access to a potentially life saving diagnostic tool. http://epetitions.direct.gov.uk/petitions/56106
There are few events I would describe as a milestone in my lifetime. Without doubt one for me is becoming a grandfather! I’m now a very proud and doting grandfather to 4 boys – Ben (10), Sam (8), Thomas (5) and Charlie (1¾). When I see them, the feeling of pride, emotion and love is like the first time, it never seems to subside. I intend seeing them grow up, finish eduction, get jobs, get married and have their own kids ♥
This isn’t my daily blog article but a short note to say thanks to those who are reading via Twitter and Facebook plus new readers from other sources. I was extremely pleased to see my record of daily views and likes smashed yesterday to an all time high. Additional thanks to those who are already sharing my message and I hope it has been useful to all readers in some way no matter how small.
I’ve received several personal messages of support from friends, patients and relatives of patients. If you like my blog, please feel free to share and recommend it widely and note I’m open to feedback so I can improve it going forward or just to get confirmation I’ve got it just right.
Also I’m now international with readers in USA, Canada, Australia, Luxembourg, Italy, Germany, Bahrain, Barbados and Switzerland. Wow!
What I can promise you going forward is straight hard hitting personal facts about my own condition but with a bit of humour thrown in with it and hopefully intermingled with some interesting story lines. Clearly I’ll also be using it to track progress along Hadrian’s Wall 26-31 May.
Will be back later with some ‘G’ words – tricky one.
In early 2010, I had been experiencing mild and infrequent warm feelings in my face and neck and I did notice a slight reddening whilst looking in a mirror when it occurred. It was odd and nothing like I had experienced before. I thought nothing of it, dismissing it as something to do with my age! When I was going through the diagnostic phase some months later, the Consultant who carried out the initial set of tests was interrogating me (literally) for any clues which could help him pin down the nature of my problem (I now know he had evidence of cancer but not the type). I ran through every single niggle and pain I had attributing most of them to age! Just as I thought the barrel was empty, I suddenly remembered about the flushing and mentioned it. Eureka.
Neuroendocrine Cancer is not that common. It can occur in various parts of the body. Some types present with vague symptoms but my type can present with something called ‘Carcinoid Syndrome’ – this is even less common. This syndrome includes (amongst others) a symptom of facial flushing invoked by the secretion of particular hormones from functioning neuroendocrine tumours. This syndrome which initially worsened, did not come fully under control until after my first major operation some 6 months later. At the time I was keeping my condition private in the workplace which led to some interesting conversations in meetings!
The treatment for this syndrome is a man-made drug type known generically as a ‘Somatostatin Analogue’. Basically this drug inhibits the release of excess hormones and therefore reduces the effects of the syndrome. I now receive a monthly injection of this amazing drug which comprises a rather large needle in the ‘jacksie’.
One of the other strange behaviors of this type of tumour is that they can sometimes cause fibrosis, including retroperitoneal fibrosis – again due to the release of excess hormones (mainly serotonin). In my case, the tumours had caused a dense fibrotic retroperitoneal reaction encircling my aorta and intravenous cava (biggest artery and vein in the body respectively) almost blocking the latter. I signed up to the risks for this ‘technically demanding’ phase of my initial operation and two surgeons spent 3 hours (within the 9 hour total time in theatre), dissecting this fibrosis achieving a 270 degree clearance freeing them up and re-establishing normal flow.
Thank you Mr Neil Pearce and Mr Mike Phillips! Mr Neil Pearce is also a co-founder of PLANETS Charity.
Family & Friends
One of the most difficult things I have ever had to do was to tell family & friends about my condition. It has taken me until now to divulge this to a much wider audience.
I couldn’t have got through this without the help, support and understanding of family and friends, in particular Chris.
I’m no stranger to exercise having served for 29 years in Her Majesty’s Forces. However, I’m not 21 anymore and I have some health challenges. Chris isn’t 21 either – despite her youthful looks (brownie points…). Some people are quite impressed by our commitment to walk 84 miles. However, I’m hoping that’s going to be the easy bit as the training regime we are putting ourselves through has been hard work and time consuming. Today we walked 12 miles with Chris suffering neck and back pain and me with a sore right toe. This followed a 9.5 mile on Saturday and an 8 mile on Sunday. We will be out again tomorrow morning. There’s an old army saying ‘train hard, fight easy’, I guess that’s our strategy.
All of that said, I can honestly say exercise is improving my general health. I keep a detailed medical log which tracks the things that worry me and my charts are showing excellent progress. Back in January, I wanted to exploit improvements and used the vehicle of fundraising to set myself a physical challenge – thus Hadrian’s Wall. Chris immediately volunteered to walk alongside me.
This is a a type of heart scan using equipment much like an ultrasound. Neuroendocrine cancer patients are at risk of developing right sided heart problems which is normally caused by the release of excess hormones from malignant tumours. This can form a white fibrous layer lining which radiologists and surgeons sometimes refer to as ‘plaque’. I actually have this in other parts of my anatomy, some has been removed during surgery. My annual heart scans have been clear to date and the risk is very low given that my biochemistry tests continue to indicate normal hormone levels.
A common secondary tumour site for metastatic Neuroendocrine Cancer is the Liver. Neuroendocrine tumours can be small and they can settle near important blood vessels making surgery at best very risky or at worst inoperable. An embolisation is a procedure carried out by an Interventional Radiologist who inserts a tube into the groin and guides it using x-ray cameras into the main artery in the liver. Once in position, drugs are released to block blood supply to the tumours (they cannot live without a blood supply). These embolisations can be ‘bland’ or the drugs can be mixed with chemo to make it more potent. I was fortunate that my Interventional Radiologist is one of the most experienced in the country. He is also the co-founder of PLANETS Charity www.planetscharity.org
‘Diagnosis‘. The dreaded moment when you’re looking at an Oncologist and waiting to be given some news. I’d been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests and now referred to an Oncologist.
Rewind 2 months to May 2010…… I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I’m happy as a pig in the proverbial! My annual Asthma clinic comes along and it’s an opportunity to work at home for the day….yahoo – no commuting! “Hi Ronny” – “Hi Liz”. Blah Blah Blah. However, glad Liz was taking it seriously – I just wanted to get back to my laptop, things to do…… After the usual tests and checks, we commenced the AOB (any other business) – “I think I’m a bit lighter than I thought I was”….”Did you mean to lose the weight?”…..”no”. Just to be sure, Liz gave me a blood test form. Had I known at the time that this was probably the most important document I might have ever held in my hand, I would have driven straight down to Bournemouth Hospital and had the test done. However, this form sat in my in-tray for around three weeks…… I was too busy on my laptop, things to do…….. To cut a long story short, my blood results were not right and the discrepancy needed further investigation. I even went on holiday to Barbados not thinking anything was wrong. In hindsight, I’m glad I didn’t know. One thing led to another and on 26 July 2010 I met with an Oncologist. He dispensed the news that I had a metastatic and incurable Cancer and without treatment I would eventually die and perhaps pretty soon (…. I did ask!)
I no longer felt in control
But thank you Liz – I often think what might have transpired without that blood test.
Listen to me explaining my diagnosis here: CLICK for the video.
There are quite a lot of words beginning with Cso I’ll only cover a few.
The Big C
The subject which must not be discussed – or is it? I read a useful article a month ago where the writer debated where we might be if, 50 years ago, we were as open about the ‘big C’ as we are now. Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter is behind some of the change in thinking in a number of ways. People are living longer and we now have much better tools to discover and treat Cancer (there I said it). Moreover, because we are more open about Cancer, there is more awareness. According to Cancer Research UK, more than one in three people in the UK will be diagnosed with some form of cancer during their lifetime.
Click on the ‘About‘ button at the top of my blog heading, useful reminder about why I’m doing what I’m doing.
My mate Tony Reynolds asked if I was going to include info on the training. Good idea because Chris and I have had some good fun, met some interesting people, seen some interesting stuff and some really funny sights. The Castleman Trailway is one of our favorite walks and it was already known to us before Hadrian’s Wall training – mostly for cycling. We once lived close to the Poole section and again near Ferndown before we moved to Ringwood in 2012. They are currently doing some improvements to the section between Ferndown and Wimborne (well done Dorset) but the gap between Ringwood and Burley remains just that – a gap (come on Hampshire!). Today we walked from home to Ferndown and stopped after 9.5 miles – Chris is nursing a neck/back injury from too much gardening, an activity which is now put on hold until after the walk as a de-risking measure. There’s always people on the trailway, walking, cycling, running and the vast majority will offer you a smile and/or a hello. A reminder of what Britain used to be like and what it should seek to become again. Check it out here:
Sometimes this word is used interchangeably with Neuroendocrine Tumour (NET) or Neuroendocrine Cancer. It is in fact a type of NET Cancer and the most common type. Carcinoid is a term more widely used in North America.
Computed tomography (CT) is a painless, sophisticated X-ray procedure. Multiple images are taken during a CT scan, and a computer compiles them into complete, cross-sectional pictures (“slices”) of soft tissue, bone, and blood vessels. It can be given with or without contrast (medication given by drink or injection to enhance X-ray pictures). I’ve had around 20 of these to date and I will continue to get these scans every 4-6 months for the foreseeable future. This is the routine way of keeping an eye on the high risk areas in my body – known as ‘surveillance’ scans. Some people don’t like them but I’ve never had an issue. There is always a fasting period of around 5 hours which I think is a worse experience than the actual scan itself! Before the scan I’m given 2 pints of water after which the staff insert a cannula into a vein in one of my arms. Before the main scan, they inject a contrast dye into my body via the cannula – this stuff makes the pictures better. Two things happen when this dye goes in, one is a metallic taste in the mouth and the other is a very warm feeling ‘down below’ equivalent to wetting yourself (not that I would know!).
This is my favorite place in the whole world. Decided today it’s time to go back!
Hope to see you tomorrow with the D Blog. If you enjoy reading my blog, please like it and comments are most welcome. If you want to get an instant copy of each blog by email, please follow me and enter your email (see bottom right).
Hope you enjoyed the ‘A’ blog yesterday. Some of you might also note I changed the previous blog titles to make them more catchy.
Here’s a few ‘B‘s
I once ran a marathon aged 28 in Verden West Germany 1984. I was there defending the free world from Communism (ahem….). It was a tough gig even at that age and the training was even tougher. I’m therefore delighted to announce that my old mate Steve Davis (pictured above), former Orienteering buddy and ‘Quaff Club’ member, has nominated my PLANETS Charity page as his chosen cause when he runs this event in Oct. Cheers Steve – you’re a very generous guy – maximum respect. I’ll drop off the gorilla suit shortly 🙂
I touched on this important topic yesterday. I have a lot of blood tests and no sooner than I get the results it’s time for some more, or so it seems to me. Happy to say that my blood tests are pretty good at the moment. My hemoglobin is constantly borderline but that seems to be the norm. I also get a very special test known as Chromogranin A every 4-6 months. The hospital packs it in ice and sends it off to Hammersmith hospital. It’s a key test as it essentially measures tumour ‘load’.
It’s quite sad that I know the purpose of every blood test and I’ve memorised the reference ranges for the 15 or so individual types. I suspect its the ‘Yeoman’ in me….. 🙂
My cancer diagnosis was confirmed by biopsy. They took samples from a large secondary tumour on my liver using a needle guided between two of my ribs using an ultrasound scanner. I needed to be awake for this as the biopsy needle had to be inserted whilst I was holding my breath. It worked like a staple gun (even the noise it made) – firing into your body before returning with the sample. It took 3 attempts to get the right sample. It wasn’t fun and I didn’t tolerate it well. However, I knew it had to be done. After the procedure, I ignored the advice to rest and recuperate and ended up in hospital with a bleed – that wasn’t fun either!
Having helped defeat Communism back in the 80s……. Chris and I recently took the opportunity to visit the united Berlin to celebrate our 39th anniversary. Chris was actually born in West Berlin, her Dad was stationed there with the Grenadier Guards but she left before she was a year old. We even located the building which once housed the Military Hospital – now a German Police Sports Establishment. Very relaxing time. Top city – we recommend it and we may even go back soon.
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I promised you an A-Z so here are some ‘A‘ headlines:
Agenda. The walk is 84 miles long – Chris and I will be walking from East to West over 6 days as follows:
25 May – Staying with friends near Newcastle
26 May – Wallsend to Heddon-on-the-Wall (with Nick Naylor)
27 May – Heddon-on-the-Wall to Chollerford
28 May – Chollerford to Once Brewed (with Dave Taylor)
29 May – Once Brewed to Lanercost (nr Brampton) (with Jim Waterson)
30 May – Lanercost to Carlisle
31 May – Carlisle to Bowness on-Solway
1 Jun – Lazy breakfast in our lodgings and then head south homewards!
I’ve had some amazing support from ex Army colleagues, not just a donation to the cause but also the use of their time and access to their contacts. I mentioned some of my ex Army friends in yesterday’s blog:
Offers are still arriving so watch this space for further updates. Certa Cito
Neuroendocrine tumours don’t really like alcohol. I can only remember having 3 pints of beer in the last 9 months. However, I might just have a celebratory drink at Bowness on-Solway! I suspect it’s close enough to ‘gods country’ to sell pints of ‘heavy’ 🙂
I was initially diagnosed with this condition following a low hemoglobin blood test result after a routine visit to an Asthma clinic. I didn’t actually have Anemia but thank god I got the blood test which, to cut a long story short, eventually led to the correct diagnosis – Neuroendocrine Cancer. Top tip – always take the opportunity to get a routine blood test, better to find problems sooner rather than later. Also, go for the blood test quickly, I took 3 weeks to get the test done. In the end, it probably didn’t make much difference to my outcome but in other more aggressive cancers, that could have been life or death.
Also called a ‘blood thinner’. I had major surgery in Nov 10 and a follow up scan in Jan 11 found some clots on my right lung. I was immediately put on an anticoagulant in the form of a daily self-administered injection. Today I will inject for the 1204th time! I will be injecting myself daily during the walk.
Lymph nodes, also called lymph glands, found in the armpit (axilla). I had some disease in my left axilla which was found by a very specialist scan. I had these chopped out in Feb 12 and they tested positive albeit they were found to be low grade. Technically speaking this was breast surgery but I still don’t get to run in Race for Life (boo hiss!)
Hope you found this interesting and looking forward to the ‘B‘s ?