Chuffed that Virginmoneygiving.com has selected my challenge as their weekly Friday focus!
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.
Follow me on twitter @ronnyallan1
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!
ee you all tomorrow?
Follow me on twitter – @ronnyallan1
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!).
Ronny & Chris
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?
Follow me on Twitter here: https://twitter.com/RonnyAllan1
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.
Follow me on Twitter @ronnyallan1 https://twitter.com/RonnyAllan1
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 🙂
Thanks for reading
Check out my Podcast (click and press play)
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.
follow me on Twitter @ronnyallan1 or click 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.
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!
Decided to do a one off today after reading a story published on 7 May on the PLANETS Charity Facebook page
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.
RIP Gloria Minghella, I dedicate this blog to you.
follow me on twitter @ronnyallan1
For an explanation of my blog, please click on the ‘About’ tag at the top of the page. Thank you.
what have the Romans ever done for us?
………. apart from better sanitation, and medicine, and education, and irrigation, and public health, and roads, and a freshwater system, and baths, and public order ……. 🙂
Well they also left us the outstanding Hadrian’s Wall which is the first topic of today’s blog. In Jan 2014, the oldest piece of paper in my ‘in tray’ was a newspaper article about the World Heritage Site of Hadrian’s Wall – it’s dated 28 Sep 2003. When I read it, I warmed to the idea of doing it but procrastinated for over 10 years. To cut a long story short, Chris and I are going to walk this wall 26 – 31 May to raise funds for PLANETS Charity and to raise awareness of Neuroendocrine Cancer. (After note – we made £4,000).
Hormones 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:
like it within the blog page,
comment on the blog,
like the Facebook page if that is your route into it,
favourite or retweet my twitter post if that is the source – my twitter ID is @ronnyallan1
follow the blog – you’ll receive an email each time I publish updates,
Thanks for your support
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 ♥
A few ‘F’ words today 🙂
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.
Love you all.
My E Blog on 5 May 14.
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
Thank you Dr Brian Stedman!
There are quite a lot of words beginning with C so I’ll only cover a few.
The Big C
The subject which must not be discussed – or is it? I read a useful article a month ago where the writer debated where we might be if, 50 years ago, we were as open about the ‘big C’ as we are now. Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter is behind some of the change in thinking in a number of ways. People are living longer and we now have much better tools to discover and treat Cancer (there I said it). Moreover, because we are more open about Cancer, there is more awareness. According 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.
Please support my blog by liking or adding a comment. Even better please follow it (see top left hand of the page), you will then get it sent directly to your inbox.
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 ?
Feel free to comment.
My plan yesterday was to blog for 26 days using the alphabet A to Z as a guide for the content. That would have taken me to 25th May, the day before my walk of Hadrian’s Wall commences. However, Chris and I were playing a game we used to play with our children on long car journeys “I can see something beginning with…..” On analysis, it appears I might struggle with certain letters! Guess what….K, J, Q, U, X, Y and Z are not necessarily the problem! I’m still intending to do this but may cover more than one letter in a single blog, thus now requiring less than 26 days in the lead up to the walk.
You’ve probably heard the term “I’m not doing this for the good of my own health” ? Well in my case I am! But not just my own health – for others too. Monies received will be donated to PLANETS Charity www.planetscharity.org My wife Chris is walking with me.
This fundraising lark is a bit difficult despite being a ‘no brainer’ to me. I suspect the walk might be easier (to be confirmed!). A lot of people are collecting for a lot of good causes – particularly on Twitter, so this type of post/tweet is often ignored. Don’t get me wrong, some of my friends and family have been very generous and I’ve even had donations from people I’ve never met. Ex Army guys too have been generous not just with their money but with their time and contacts too – even some old muckers who I’ve not been in contact with for some years. But that is an army trait, you can meet up with someone you knew a long time ago and pick up where you left off despite not having been in regular contact. Old army mates will be walking sections of the wall with Chris and I (Dave Taylor and Jim Waterson) and Bernie Rigby is volunteering to abseil down the Spinnaker Tower in Portsmouth (rather her than me!). Colleagues at work have also contributed generously with Stephanie Mitchell baking cakes with plans to bake more, Helen Webb for collecting sponsorship money, Alex Amy and Jo Howitt for arranging a cake sale in the Southampton office canteen but also for helping to collect sponsorship money. I am truly humbled.
I recently ‘opened up’ about my condition and approached the media for some coverage. I was lucky to get this article in a local newspaper which was also copied to their website and twitter:
The donation site has already been mentioned but if you would like to sign the scanner e-petition, this can be done here:
If you like what I’m doing please follow and share this blog and where applicable, please also like and comment /share my Facebook and Twitter posts (see @ronnyallan1).
I’m very grateful for your support.
……………..now to think of ‘things beginning with A’ for tomorrows blog.