The Big C: My Story

A brief account of the last 10 months, having reached a major turning point in the story of my illness and recovery.

INTRODUCTION

This post appears at this time due to news that I received yesterday, which while not entirely unexpected was nevertheless excellent to receive. We start with a…

TIMELINE OF EVENTS

This is a story that has been ten months unfolding, the key dates being (as far as I can remember them):

  • October 5th 2018 – Early return from work due to illness.
  • October 6th 2018 – Trip to Godalming to visit my mother and see the town cancelled due to illness.
  • October 8th 2018 – Hospitalized, so weakened that a saline drip was needed to get me from the flat I was living in (two outside staircases, one of them spiral, from street level) to a waiting ambulance.
  • October 9th-11th 2018 – Investigations reveal that the mystery illness is in fact stage 4 testicular cancer and that there are a number of metastases, including large tumours attacking both lungs (the brain and spleen are also host to smaller tumours).
  • October 12th 2018 – Bluelighted to Addenbrookes just in time to save me from an operation that had it been performed at that time would probably have seen the end of my life.
  • October – December 2018 – Once stabilized there follows a seven week period of intensive chemotherapy to deal with the tumours.
  • December 9th – discharge from Addenbrookes, arrive at new bungalow in North Lynn to begin recuperation.
  • December – January – in and out of Addenbrookes for various reasons, including an internal bleed caused by blood thinners working too effectively.
  • February – March 2019 – a couple of admissions to QEH for breathing difficulties (the second certainly brought on by anxiety)
  • April – July 2019 – A period of consistent improvement, assisted by regular physio sessions at The Norfolk Hospice, Tapping House, leading to:
  • July 12th 2019 – At Addenbrookes for operation to remove the testicle that was the cause of all the trouble.
  • August 1 2019 – New physio sessions at Tapping House start.
  • August 5 2019 – CT Scan at Addenbrookes, although due to my veins not co-operating (six failed attempts) they cannot inject the usual contrast medium.
  • August 9th 2019 – appointment with clinical psychologist Dr Amy Daglish at QEH, leading to the arrangement of Cognitive Behaviour Therapy sessions which will start at end of August.
  • August 12th 2019 – appointment with Dr Danish Mazhar at Addenbrookes. Brings the hoped for and almost expected news that I am officially clear of cancer. My next appointment is two months away, and they will be steadily decreasing in frequency, although I will continue to be checked on for the next 10 years. On the way home I arrange to visit NAS West Norfolk’s allotment in West Lynn, where a sensory path is being laid that afternoon.

SHOUT OUTS

Another bulleted list as I do not wish to give these an official ranking order:

  • All the staff at Addenbrookes who were part of my recovery from oncology consultants Dr Danish Mazhar and Dr Han Wong through all the nurses I encountered to all the wonderful support staff who helped at various times. Also and overarching this to that great institution that made it all possible – The NHS.
  • My family, who have been incredibly supportive through all this.
  • NAS West Norfolk who have been incredible throughout this very difficult period. The comments in response to the announcement on their facebook pages of my ‘all clear’ have been amazing to read. It will not be too long now before you have a fully functioning branch secretary again.
  • James and Sons of Fakenham who have kept my job open for me through all this time – I expect to return to work in the spring of next year (given the damage to my lungs returning to that workplace during the winter months seems not to be sensible).
  • Various of my fellow bloggers who have been very supportive through these months (you all know who you are!).

For pretty much the first time since becoming ill I now look to the future with confidence rather than mere hope.

PHOTOGRAPHS

First up, I have just sent an email to the Independent Living Group asking them to include some of my photographs in their Disability Pride Digital Photography exhibition. As well as a link to this blog in the body of the email I attached 10 photographs, one my desktop background image, taken in Cornwall last year, and the other nine recent shots for reasons that should be obvious to anyone reading this post:

Carbis Bay II
The desktoip background image

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Here are some shots from the allotment area:

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A large and colourful fly.

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Red Admiral and bee enjoying same plant.

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The remainder of my pictures…

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Some shots from the new music sessions, which started at the discovery centre this saturday.

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A ridiculously extended car seen from my window on Saturday.

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A map of Addenbrookes, on the back of a leaflet which had been discarded carelessly on the ground floor of the carpark, and which I picked up rather than leave lying around.
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A beautiful Red Admiral.

Nomination For Sunshine Blogger Award (#3) And Other Stuff

A response to my third nomination for a Sunshine Blogger Award and plenty of other stuff.

INTRODUCTION

The nomination that gives this post its title comes from someone I had previously nominated for this award, which is why I am approaching things in the way I am, as I am going to use stuff from my last Sunshine Blogger Award nomination response to cover that side of things.

THE HIGHLIGHTS FROM MY PREVIOUS NOMINATION POST.

First, my thanks to Erika’s Corner (stigmasnomore) for the nomination. Now for those highlights (click the link in the section heading to view the full post):

RulesAnswersQsNominations

I open my questions up to responses from everyone.

THE SECOND MOST EXTRAORDINARY CRICKET MATCH OF 2019

For the most extraordinary match of the year start here. In any other year the inaugural England v Ireland test match at Lord’s would have had no competition for the title of that year’s most extraordinary match. Twice in a few weeks Lord’s was the scene of a match that reached deep into “script rejection” territory.

England slumped to 85 all out on the first day, a combination of poor batting and some good bowling, especially from Tim Murtagh and MarkRed‘ Adair (a nickname I coined in a previous post).

Ireland themselves managed 207 in response, a lead of 122. Olly Stone, Norfolk born fast bowler, took three wickets and surely ensured continuing involvement with test cricket for himself. Then, with England having one over to face at the end of day two Jack Leach, averaging four for Somerset in the county championship this year, was sent out to open, shielding Jason Roy.

Having survived the over in the evening Leach proceeded to make 92, while Roy, shielded from a potential second failure in one day also topped the 50. The came a slide from 177-1 at the high water mark of the innings to 303 all out, a lead of 181. Then in the most extraordinary twist, Stuart Broad, reckoned by some (including me) to be a fading force at test level and Chris Woakes took advantage of swing friendly conditions to rout Ireland for 38, giving England victory by 143 runs.

I note that for the first Ashes test Joe Root has been moved up to number three (desperately needed although he has little relish for it). However, this only deals with one top order problem. The opening pair remains an unresolved issue, with Roy having done so much tter at three than he did opening in the first innings. If England are 30-3 at the start of every innings against Australia they will be absolutely hammered in the series. I continue to hold out for what I now call the ‘Beaumont Solution‘.

LINKS AND PHOTOGRAPHS

I have two links to share with you before getting to the pictures:

  1. Anna was kind enough to give me a mention in her post “No 39 in my drawing goals for 2019” and I reciprocate here by advising you to visit the post.

The Skwawkbox has recently put up a post titled 124 policies Labour will deliver in government” – the policies themselves are below, in the form of the graphic (click on it to view it full size) that is the centrepiece of the Skwawkbox post:
Skwawkbox
The feature image of my previous post was a water based insect that at the time I had yet to identify. My research suggests that it is an Azure Damselfly:

British Nature Guide Pic:

Picture

And my close up photograph is below.

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Now for my new photographs, and there are plenty of them…

Beer Festival GP
We start with a few pictures from the King’s Lynn Beer Festival at Stuart House (NAS West Norfolk was this year’s designated charity beneficiary)

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The moment the 2019 World Cup was won.

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A Peacock Butterfly (relatively uncommon, although known to have some living places in King’s Lynn)
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A Painted Lady (a variety of butterfly I had not previosuly observed in King’s Lynn)

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Sunshine Blogger Award Nomination

My response to being nominated for a Sunshine Blogger Award.

INTRODUCTION

Thank you to simpleillusionblog for the nomination. This post is my response to that nomination.

SBA

I hope that learnography will get something close to an answer to a question they raised in a comment recently:

Will you share how you feel before, during or after the writing? In fact, writing is the motor knowledge of brain circuits which deals with the finger mapping of cerebellar learnography. Your therapeutic experience is valuable in the development of cerebellar basal ganglia circuitry. Thanks

First up for the rest of thist post…

THE RULES

  1. Thank the blogger who nominated you.
  2. Answer the 11 questions the blogger asked you.
  3. Nominate 11 new blogs to receive the award and write them 11 new questions.
  4. List the rules and display the Sunshine Blogger Award in your post/or on your blog.

MY ANSWERS TO SIMPLEILLUSION’S QUESTIONS

  1. How dedicated are you as a blogger? pretty dedicated – in just under eight years since I started I have produced just over 1,500 posts, and whenever possible I like to put something up most days. I also read a huge number of blogs, posting likes and where appropriate comments.
  2.  What do you love most about blogging? Interacting with a community, something that I struggle with except via the medium of a computer.
  3. Do you collect anything when you travel and if so, what and why? I collect maps to remind of me of places I have visited and I also collect photographs to share so that others can see things that have caught my eye.
  4. Do you speak any other languages? No, I am sadly monolingual (my efforts to learn other languages have all been failures).
  5. Are you a tea or coffee drinker? I am a coffee drinker. These days I drink filter coffee, and my method for producing the perfect brew is: Two heaped scoops of coffee grounds into the pot, cover with enough boiling water to produce two cups of coffee, place the top over the pot and leave to stand for not less than five minutes (I check my emails while filling in this time), then press the plunger down and pour. The result looks like black muck and drinks like liquid velvet.
  6. How did your blog get its name and why did you start it? My blog got its name from a shortening of my official 2006 diagnosis – Asperger’s Syndrome – although these days like most autistic people I simply use autism and refer to myself where appropriate as an autistic person. I started the blog because I hoped that people would be interested in reading about an autistic person from their own point of view. Also, I find writing to be therapeutic – I always feel better for having created a blog post.
  7. What post are you most proud of on your blog? The one I wrote about going through a melt down, because it was a difficult and sensitive subject and if I had misfired with such a post I could have copped some serious stick, while in the event it was very well received.
  8. Name one thing you didn’t expect to happen with your blog that has. That I would acquire as many followers as I have done – almost 800 of you now follow this blog.
  9. What is your typical weekend like? I can no longer claim to have a typical weekend, but unless something (usually an unscheduled hospital trip these days) prevents it Sunday lunch with family remains a regular feature.
  10. What is your greatest inspiration in life? My inspiration comes from the natural world – I love to get outside in to green spaces and see what the beasts and birds are doing.
  11. What advice would you give someone wanting to start a travel blog today? I would say start by picking a title for your blog and creating a wordpress site, then continue by searching wordpress for travel blogs and see what kinds of stuff they post, also leave a few likes and comments to advertise your presence (I spent my first three years or so as a blogger failing to do this), then think about what you want your first post to look like and set about creating it. Once you have created the post make sure it is categorized and tagged properly (no more than 10 tags for a post or you could fall foul of various spam filters) and that you have a good feature image. If you do other forms of social media (not all bloggers do) then post links there to maximise exposure of the blog.

MY QUESTIONS

  1. What inspired you to become a blogger?
  2. How do you promote your blog?
  3. What has been your greatest recent challenge?
  4. Do you ever set yourself to do muli-post blogging projects (e.g my “100 cricketers” series, which occupied 40 posts)?
  5. How do you go about creating a blog post?
  6. Which of your posts did you most enjoy creating and why?
  7. Where in the world would you most like to visit and why?
  8. What is your favourite meal?
  9. What kind of music do you most enjoy? If you fancy expanding on this one you could do a “Desert Island Discs” style selection of eight pieces and finish by pickinf one from that list.
  10. What do you enjoy most about blogging?
  11. Do you have an idea that you think you could turn into a book? If so what is it?

MY NOMINATIONS

I have nominated the following, who I present as a bulleted list to avoid any suggestion of a ranking order:

If I have not nominated you but you fancy taking on my questions anyway, please feel free to do so.

PHOTOGRAPHS

I sign off in my usual fashion…

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My Third Admission to Addenbrookes

A detailed account of my third admission to Addenbrookes.

INTRODUCTION

As promised in my previous post I am now going to give a full account of my most recent admission to Addenbrookes. 

THE BUILD UP

Although I was admitted on a Sunday this story begins with the Friday (January 25th) before. That day I felt very tired and not really able to do anything, but hoped that a quiet day would see things improve because I was not feeling ill as such. I only managed to eat half of my sausage and chips supper that evening, and was still very tired and downbeat the following day. That Saturday evening I had supper at my aunt’s house but got very tired indeed, and by the following morning I was effectively not functioning at all. 

THE READMISSION

On Sunday afternoon my aunt drove me down to Addenbrooke’s for an emergency readmission. Two possible causes of the problem emerged as front runners very quickly – a lung infection or a delayed reaction to the Bleomycin. My breathing was at a dangerously low level, and I was on a high dose of extra oxygen for a whole week, before it was halved, and then, on my eighth day as an in-patient removed altogether.

I was moved up to the very familiar surroundings of Ward D9, having been allocated bed 13 (a sensible choice, as it is in a small room with just three other beds and the arrangements are such as to provide a measure of privacy.

OCCUPYING MYSELF AS A PATIENT

My father made several trips to Cambridge Central Library to get me books to read in my hospital bed (focussing on science – my brain is functioning pretty well at the moment, and low oxygen levels not withstanding I was overall feeling not too bad). I had also been equipped with puzzle books, and I devoted some time to planning future writing in between these activities. 

This developed into a plan for a series of cricket posts in the course which I plan to write about 100 cricketers who mean a lot to me. I have divided my cricketers into nine XIs and one player to round out the 100 at the end. Within that division I have subdivided each 11 into parts to be covered in individual posts. The plan is for the 1st and 100th cricketers to get individual posts to themselves (and #cricketer 1 in the list habitually bats at no 1 in the order, being a choice that suits my purpose in several ways).

I also received a postcard from family in Sweden while I was in hospital, which came with a nice little extra:

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A Sweden 2019 stamp – I love that fish.

AWAITING DISCHARGE

From Monday morning (three days ago) onwards I was basically waiting to be discharged. I had fully accepted, especially given that this was my second emergency readmission in quite a short space of time, that I could not be discharged until a care package was in place for me. Nevertheless, it was difficult to retain patience when eager to be back home and when particularly wanting to be out in time to attend a certificate presentation. For a while at least I will be needing regular professional attention because my autism causes me not to realise how seriously things can be going wrong (e.g a general feeling of fatigue that turns out to be a lung infection making itself felt), and frankly I am no keener than anyone else on the notion of further readmissions to Addenbrookes, though I will of course be visiting as an outpatient for a considerable time to come. 

HOME AGAIN

At last, just after 7PM yesterday, I arrived home and was able to start settling myself back into home life. I am on antibiotics for the lung infection, anabolic steroids and various other medications. Also, I am wearing compression stockings on my legs as a safety device (the swelling in the left leg has now definitely gone, and with it the pain I was experiencing in that area, but I will retain the stockings until told otherwise). 

Setting The Stage For Tomorrow And Monday

Setting out my stall for tomorrow and Monday, answering one problem and setting another. Also demonstrating the creation of a poster.

INTRODUCTION

Between work, an important meeting on Tuesday and editing photographs from last weekend I have not been able to put up any blog posts since Monday. This post will set out what is on the agenda for tomorrow and Monday, give a solution to one problem and set another. 

UPCOMING

I have already produced two posts in my “Autism Events” series, which take that story up to the end of the Norwich event (see here and here), and covering Saturday’s event in London will certainly take two posts, possibly three. Additionally the photographs I have of the journey between King’s Cross and Uxbridge will form the backbone of a couple of posts (at least) on my London transport themed website. 

A SOLUTION

In Midweek Medley III I posed the following problem:

Flip

Below is the answer and a published solution from brilliant.

C

Blan

A NEW PROBLEM

Another one from brilliant:

SF

CREATING A RAILWAYANA POSTER

This is one of the tasks I had to perform at work this week. I actually produced two versions due to a dispute over which photograph to use as the official sample. The brief was to produce a poster that looked like the front cover of a catalogue, advertising the fact that part 1 of the W A Sharman collection of  iconic steam locomotive photographs will be going under the hammer:

Dent Head Viaduct main
This was the choice of former railway worker Paul, one with which I am in full agreement…

Dent Head Viaduct - Label

Nicholas Nickleby main
…but auctioneer David liked this one, so I produced two versions of the poster. These images were obtained by scanning the original photographs at 600dpi.

Nicholas Nickleby Label

SharmanSM1
This is a screenshot of my preferred version.
Flyer 2
I also produced flyers for Paul to use at an event he was attending.

Flyer 1

Below are the links to the original word documents.

Sharman poster 1

Sharman poster 2

Sunshine Blogger Questions

A special post from stimtheline to answer my questions, not a full response to my nomination as oer official requirements, just a quite magnificent one of its own type…

Stim the Line

What a great week! I was nominated for a Sunshine Blogger Award by the wonderful Thomas over as the equally wonderful Aspiblog.

I’m not nominating anyone this time around (I still pretty tired, and I haven’t been keeping up with everyone, and so I would hate to stress someone out with a nomination. This is possibly an unfounded anxiety, but hey, that’s my brain), but I got so excited when I saw the questions, that I knew I’d have to make a post just for them!

So, here are the questions and answers, I can’t put into words how much fun answering them. If that makes me a huge nerd, so be it!

1.If you could restore one place that exists only as an archaeological site to perfect condition what would it be?

I did a lot of research trying to make a decision here. My instincts would…

View original post 1,055 more words

Sunshine Blogger Award

My response to Alison (The Unabashed Autist and Alison Wonderland) nominating me for a Sunshine Blogger Award)

INTRODUCTION

Sunshine Blogger Award

I am honoured to have been nominated for this award by the wonderful Alison (The Unabashed Autist and Alison Wonderland) – click here to see her post in full.

DA ROOLZ

I have borrowed this section heading from Jerry Coyne of whyevolutionistrue. Title explained, here are the rules:

The Sunshine Blogger Award is for bloggers who are creative, positive and inspiring as they spread sunshine to the blogging community. 

Here are the rules:

  1. Thank the person who nominated you with a blog post and a link back to their blog.
  2. Answer the 11 questions sent by the person who nominated you.
  3. Nominate 11 new blogs to receive the award and write them 11 new questions.
  4. List the rules and display the Sunshine Blogger Award logo in your post and/or your blog.

ALISON’S QUESTIONS

  1. Do you sing in the shower? No
  2. Is there someone for whom you’d die? I cannot answer this one.
  3. Set a time for 10 minutes.  You have until it expires to pick a band name.  Go. I am mainly a fan of classical music, and am no good at coming uo with band names.
  4. One thing you would surely grab before exiting if there were a fire? My camera
  5.  You’re chosen as part of an exploration team to visit a new planet and return in two years.  Do you go? Absolutely – no way am I missing out on something like that.
  6. A time traveler offers a choice between a cure for AIDS and cancer or a clean, plentiful source of energy in exchange for keeping her story secret. Which would you choose? I go for the clean, plentiful source of energy – we are already making good progress on AIDS and cancer, but not on ensuring that our planet remains capable of sustaining life, so I deem the latter the greater necessity.
  7. How long since you last ate peanut butter? A very long time.
  8. What do you collect? I collect things with a railway connection.
  9. If you could step outside of time for however long you wanted, then return and no time has passed, what would you do with the time? I genuinely don’t know.
  10. Who is the first comedian that made you laugh so hard you cried? I can’t remember
  11. Who will play you in the hypothetical movie about your life story? Daniel Radcliffe

MY NOMINATIONS

Whether I have nominated you or not please feel free to respond to the challenge if you so desire. My official nominations are:

The Thoughts of Life and Me (Masgautsen) – sample post #tbt Kaffekanna (The coffee pot) opening paragraph below:

One of the posts I found in my drafts was this post about a nice cafe and wine bar. It is quite fitting that I started this post and never published it, because this is one of those places that I really wanted to go visit when they first opened, but it took me quite some time before I actually went.

The Adventures of Captain Cornwall (Laura Easlick) – sample post A Sunday Afternoon in Zennor – opening lines reproduced below:

If I won the lottery, I would buy a house in Zennor.

I love the idea of having plenty of space between houses, with unspoiled views and dramatic coastal scenery.

West Cornwall can feel like a different place to the rest of the county. Driving from Hayle in West Cornwall to Zennor in the area known as West Penwith, the views change quickly and it suddenly feels like you’re on the way to the end of the Earth!

The Skwawkbox – sample post VIDEO: NEIL ‘DOES A PAXMAN’ ON SQUIRMING TORY MINISTER OVER CORBYN SMEARS

…However, it seems that Mr Neil agrees with us that recent smears by Tory front-benchers against Jeremy Corbyn have been beyond the pale – as they prompted him to ‘do a Paxman’ on Wednesday on a hapless Tory minister during the BBC’s Daily Politics programme:

Robert Loves Pi – sample post Three Rings of Eleven (as I pointed out on the original, I saw five rings of eleven shapes) – given the significance of the number 11 to this challenge this is a particularly neat fit (IMO):

Three Rings of Eleven

Undestined Pieces (Anusha Sridharan) – sample post Bright days bring bright beginnings.

…A day gets a good start when you have made up your mind to think all positive, and nothing but positive. What acts like an icing to it is having a nobel purpose attached to it.

Travelling the World (Ester) – sample post Greenwich-London:

Our Autism Blog (Emzamy) – sample post A Cure for Autism? (note the question mark with which this title ends – and that this piece follows the usual rule that applies to titles including a question, or I would not be linking to it) – quote from the end of the post:

The most important “cure” for Autism is to teach the child that being different is not a bad thing.
We need to make it possible for a child to live and thrive by helping people to understand the nature of the condition.
For the child to grow up and be happy, their Autistic needs have to be met.
The way forward for us all is to accept difference in a world full of discrimination.

Getting rid of Autism isn’t the key to the perfect child…..I love mine just the way she is.

The Neurodivergent Rebel – sample post Web Resources

My last three nominations are blogs I also nominated in my response post when I was nominated for a Blogger Recognition Award.

Stimtheline (Mish) – what else could be sample post but The Autistic Bill of Rights Shareable Image:

Autistic Bill of Rights.pub

The Silent Wave (Laina Eartharcher, also has a sharing site, Lainas Collection), sample post The Hitchhiker’s Guide to Neurotypicality:

In Short:

The NT Take On Life is often (too frequently) to dumb it down, complicate it with bullshit and distractions, condense it into bite-size pieces, and send it viral.  Strip it of substance, complexity, and real-ness, lace it with double-speak, polish it up into something shiny and digestible, package it for appearances, and act like That’s The Way Things Are, assuming broad acceptance and mass adoption.

I started this list of nominations in Nordic lands, with a Norwegian blog, and I finish back in that part of the world with a Swedish blog, fargaregardsanna (Anna Bohlin), sample post Så här bygger vi i Trosa kommun – not climate smart building in Trosa Sweden:

To finish this section: If you want to make a comment that relates specifically to one of the posts I have highlighted in this piece please go the original to do so. If your comment is about the post as a whole or about something that is specifically my work then by all means post it here.

MY QUESTIONS FOR NOMINEES (AND ANYONE ELSE WHO IS INTERESTED)

  1.  If you could restore one place that exists only as an archaeological site to perfect condition waht would it be?
  2. If you remove from existence one current organization which would it be?
  3. What is the most amazing sporting performance you have ever witnessed?
  4. Who is your favourite author of fiction?
  5. Pick one word beginning with each letter of the alphabet that is particularly associated with your life.
  6. An alien visitor offers to give you the solution to one of humanity’s great unsolved problems: which one do you ask for?
  7. If traveling were free, where would you like to go? 
  8. If you could have a dinosaur renamed in your honour which one would it be? (note to Autism Mom, if you take these questions on you are permitted to subcontract this one to The Navigator!) 

    the last three questions are based on the BBC Radio 4 programme Desert Island Discs – :

  9. You are able to save one music CD from the waves as you scramble ashore – what would you like to be on it? (If you want to go above and beyond and make the full eight music choices around which the actual programme is built be my guest!)
  10. Choose three books that would help you pass the time on the island (the real thing restricts castaways to one choice, giving them The Bible and The Complete Works of Shakespeare whether they want them or not).
  11. Choose one luxury item (it should not be too useful, but I am not going to be harsh on that, and I will allow a little latitude in the matter of what the main item has with it – e.g if you select a camera, as I would, it comes with a spare battery, as well as the fully charged one that is currently in there).

PHOTOGRAPHS

Having completed the business part of this piece I conclude it by putting up some recent photographs of my own:

Squirrel CLXIISquirrel CLXISquirrel CLXBlackbird CLXIICormorant CLXIICormorants and gullsCormorant CLXIBrace of cormorants IIBrace of cormorantsCormorant CLXWater birdsFlying Cormorant XXMoorhen CLXI