Monday – Autism, Capita and Cancer

An account of a busy, tiring but important day in my story – yesterday.

INTRODUCTION

Yesterday was a very busy day for me, starting with a session in my home with Capita as part of processing a PIP claim and followed by various things at Addenbrookes Hospital. This post covers the days events in some detail.

THE START OF THE DAY – CAPITA

I was up and about by 7AM as I intended to be, giving myself plenty of time to prepare for the arrival of Capita. At just about 9AM somebody from Tapping House arrived to support me through the session, closely followed by my parents and Capita’s representative.

This session went fairly well, helped by the fact that the Capita representative actually had some knowledge of autism, which meant that I was being asked very direct questions, which in turn made handling them easier.

While I have as yet no expectations about the final outcome of this assessment I believe that it went about as well as it could have done, and therefore I am cautiously optimistic.

ADDENBROOKES PRELIMINARIES

The day at Addenbrookes started with a weigh-in (71.3 Kilos), and then an appointment with my oncology specialists to discuss progress in my case. My tumour markers are continuing to drop (from being in the hundreds of thousands they are now down to 36, while they need to get down to 4 for me to safe) and the overall prognosis is improved (when my treatment started I was told that there was about a 50% chance of all the cancers that were afflicting me being cleared, and I have now been told that the odds are better than that). When my lungs have cleared sufficiently for me to be considered strong enough to through such a process there will be an operation to remove the testicle that was the root cause of all my problems. There remains some uncertainty over what will ultimately be done about the four small tumours in my brain. I am due back at Addenbrookes in two weeks time, and in the intervening week I will receive an email from someone at the hospital to check up on me (I believe that this will be a regular feature for the future).

X-RAY AND BLOOD SAMPLES TAKEN

Following on from this session it was time for a chest X-Ray and then for some blood to be taken. Both went extremely smoothly, with my veins being fully co-operative for once. 

After this there remained one last thing to be done at the hospital…

AN IRON INFUSION

The iron infusion looks like liquid rust (this one is the third I have had, and may well not be the last). It takes about half an hour to run, and then one has to wait for another half hour while potential side effects are monitored. Fortunately there were none and I got away fairly swiftly at the end. This was a tiring but very satisfactory day, and one that has boosted my confidence for the future. There will still be tough times ahead, but I can also look forward with confidence to a better future. 

PHOTOGRAPHS

Here are some pictures I took yesterday and today…

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A windmill on the way to Addenbrookes.
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The first of three pictures taken in the hospital.
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This bust is of Edward Douty.

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A pride flag in the hospital car park.

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Ely Cathedral
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The spire of St Nicholas Chapel (1st of today’s pictures)
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The clock at The Pretty Tea Shop, Norfolk Street, where I went for an NAS West Norfolk coffee morning today (first of six pics from that venue).

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An upcoming NAS West Norfolk talk.

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Receiving My Bronze Level Art Award

An account of how I gained an Arts Award (Bronze Level).

INTRODUCTION

Today was the day I and three other people picked up Arts Awards (Bronze Level) from Trinity College, London, for work done at Musical Keys sessions in King’s Lynn run for autistic people. 

THE WORK

There were four elements to the work that had to be done to earn this award:

  1. Creating music during the sessions.
  2. Demonstrating knowledge and understanding of how to create that music and being able to share with the group what one was doing.
  3. Providing a record of an arts related event that one had attended.
  4. Providing some information about one particular artist from whom you have taken inspiration.

I am now going to give you access to each of these four areas.

CREATING THE MUSIC/ SHARING HOW THIS IS DONE

My creative work was done using Scratch and Reaper on the computers. I do not have this work available to share at present, but here is a link to an old post which describes the process.

This one shows Scratch:

Here are some extra pictures set into a word document:

Photos from MK

A RECORD OF AN ARTS EVENT

I interpreted this a trifle loosely so that I could use something for which I not only had a record but for which mine was the only photographic record – the time when Number 2 Hampton Court, Nelson Street, King’s Lynn was turned into an exhibition for Heritage Open Day. 

This is what the document I submitted looks like:

2 Hampton Court

MY CHOSEN ARTIST

I selected Maurits Cornelis Escher as my featured artist. Before producing my own offering about him, including three sample pictures I give you a variation on one of his pictures from Anna, titled “Never Ending Blogger

Never ending blogger

Maurits Cornelis Escher has been a favourite artist of mine for a very long time. His mathematical pictures and impossible constructions particularly appeal to me because I enjoy mathematics, and unpicking optical illusions myself.

https://www.mcescher.com/about/biography/

Maurits Cornelis Escher (1898-1972) is one of the world’s most famous graphic artists. His art is enjoyed by millions of people all over the world, as can be seen on the many web sites on the internet.

He is most famous for his so-called impossible constructions, such as Ascending and Descending, Relativity, his Transformation Prints, such as Metamorphosis I, Metamorphosis II and Metamorphosis III, Sky & Water I or Reptiles.

But he also made some wonderful, more realistic work during the time he lived and traveled in Italy.

Castrovalva for example, where one already can see Escher’s fascination for high and low, close by and far away. The lithograph Atrani, a small town on the Amalfi Coast was made in 1931, but comes back for example, in his masterpiece Metamorphosis I and II.

M.C. Escher, during his lifetime, made 448 lithographs, woodcuts and wood engravings and over 2000 drawings and sketches. Like some of his famous predecessors, – Michelangelo, Leonardo da Vinci, Dürer and Holbein-, M.C. Escher was left-handed.

Apart from being a graphic artist, M.C. Escher illustrated books, designed tapestries, postage stamps and murals. He was born in Leeuwarden, the Netherlands, as the fourth and youngest son of a civil engineer. After 5 years the family moved to Arnhem where Escher spent most of his youth. After failing his high school exams, Maurits ultimately was enrolled in the School for Architecture and Decorative Arts in Haarlem.

Here are the three pictures I selected to show along with this:

Relativity
“Relativity”, a personal favourite
Monks Large
“The Monks”
Waterfall Large
“The Waterfall”

TODAY’S PRESENTATION

I had been worried that my health might prevent me from being present to collect my certificate, but fortunately I improved sufficiently to be discharged from hospital AND a care plan was put in place ready for said discharge, and in the event, although I found the experience quite tiring I was able to attend and collect my certificate in person. Here are some photos from today:

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Me with my certificate, with Oliver from Musical Keys next to me (the black beanie covers the most visible effect of the intensive chemo)
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A group shot
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A close-up of the certificate.

 

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). 

Cricket and a Few Other Bits and Bobs

Some thoughts on the opening day of the test series between the West Indies and England, and a couple of NAS West Norfolk related bits.

INTRODUCTION

England’s latest test series in the West Indies is under way, and for the most part this post deals with the opening day’s play which happened yesterday. 

ANDERSON SHOWS THAT
CLASS IS PERMANENT

At the age of 36, by when many bowlers of his type have retired, James Anderson showed once again just how magnificent he can be. Yesterday he bowled 24 overs and finished with figures of 4-33 in a West Indies total of 264-8. He was well backed up by Ben Stokes (3-47 from 19.2 overs – the last taken on the brink of the close, hence the over not being completed). Several of the West Indians got starts, but unless Hetmeyer (56 not out overnight) does something remarkable in company with the tail none have gone on to make really big scores, and that is why their total looks decidedly modest, especially given that they won the toss and chose to bat.

Before very long we shall see how England handle batting on this surface. I anticipate a fairly handy lead on first innings for England. For the moment however, and for the umpteenth time it is a case of “take a bow, Jimmy”.

A COUPLE OF EXTRAS

On Tuesday morning I attended an NAS West Norfolk committee meeting for the first time since becoming ill, and earlier today I typed up my notes and emailed them to the branch chair. For reasons that should not need explaining I cannot share any details of that meeting here. 

Still on the NAS West Norfolk front, a lady named Claire who is a carer for the younger son of our branch chair is running in the year’s GEAR (Grand East Anglia Run) to raise funds for NAS West Norfolk. You can find her Just Giving page here, and I can assure you that every penny received by NAS West Norfolk is used to help autistic people (we spend about £15,000 per year running activities for our members and donations are our only source of income).

Warning Against A Cambridge University Research Project

A warning about a piece of autism research whose requirements for participation are at best poorly set out and ay worst downright discriminatiory.

INTRODUCTION

Readers of this blog will be well aware that I have taken part in a number of research projects over the years, many of them based in Cambridge. This is therefore a painful little post to write, but one that I feel I must in the circumstances, due to what I conisder to be a completely unacceptable outlining of requirements. 

TRUST DESTROYED

This particular research study demands autistic adults who have at least one GCSE at Grade C or better. This is not a problem for me personally as I actually have a degree, but it does automatically exclude many, and it smacks to me of dishonesty, since my reading of it as that is an attempt to avoid the use of functionality labels while at the same time trying to esnure that they get poeple who they regard as “high functioning”. I could not personally take part in this study because I could only do such things on a basis of trust, and by setting out their requirements in this fashion they have very effectually ensured that trust is not present. 

My advice to anyone who is approached with a view to taking part in this study is to refuse to do so, and hope that no one takes part, so that this misbegotten study dies a speedy death. 

My advice to those behind this study (I will not name and shame the lead researcher, and kindly do not ask that I do so) is to abandon this version and come up with a more acceptable way of communicating your requirements (including possibly accepting the extra diffculty of opening your study up to all autistic people, rather than seeking to exclude a very significant proportion thereoof). If the necessary work is done and the new version of the study is presented sufficiently sensitively I may be willing to participate, but as it stands at present I cannot and will not have anything to do with it.

Looking Ahead

Accounts of a very important and successful meeting yesterday morning and of a personally very satisfying moment also from yesterday when it was cinfirmed that I have got anm Arts Award (Bronze level).

INTRODUCTION

This post deals with two things that both happened yesterday, one of huge significance, the other less so but very personally satisfying. 

A VERY SUCCESSFUL MEETING WITH REBECCA FROM TAPPING HOUSE

I had arranged to see Rebecca yesterday morning for a follow-up meeting after our first very successful meet-up a little earlier. This meeting went magnificently, with Rebecca making a number excellent and logical suggestions for ways to help me. I have agreed in principle to meet with either an Occupational Therapist or a Physio to talk about ways to improve my physical fitness. She also suggested that I might be interested in courses they run at Tapping House where I would have the opportunity to meet others who have had similiar experiences to my own, which also sounds a very interesting possibility. 

Knowing that I need help and support to get through this difficult time in my life I am minded to consider any options that seem sensible, as all of the above do. I finished yesterday’s session feeling much better about life in general for the knowledge that such potentially useful help and support is being made available.

Whatever happens from here on, Tapping House have already proven to be worth their weight in gold, and I am very grateful for everything they are doing for me.

AN ARTS AWARD

One of the last things I did before illness took over my life completely was to submit a portfolio at Musical Keys for an Arts Award (Bronze Level). It has now been confirmed that I did enough to earn to said award (equivalent apparently to a grade D at GCSE), which I am delighted by. In addition to the specific Musical Keys stuff I had to produce something about seeing art in the flesh, and I had chosen something where the only photographic record of the occasion was my own, so this award means, albeit at a low level, official recogniton for my photography. I also had to produce something about an individual artist who had inspired me, and I opted for Maurits Cornelis Escher, for whom there is an official website from which I cribbed (and of course admitted to doing so).

PHOTOGRAPHS

Here are some pictures to end this little post:

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This globe is on display at my aunt’s house
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A cricket themed tea towel being displayed as an ornament in my kitchen.

The Struggle to Cope

An account of my recent short stay at Addenbrookes. Features the story of an autistic meltdown, which some readers may find difficult.

INTRODUCTION

I got home latish last night from a short stay at Addenbrookes hospital occasioned initially by a problem with my left leg. This post deals with thise very difficult period of a few days. Advance warning: includes a description of an autistic meltdown. I have two preliminaries to clear up first:

HOSPITAL STAFF DESERVE UNEQUIVOCAL PRAISE

There were times over these few days when I was not fully aware of what was going on around me, but I retained sufficient awareness and understanding of the overall situation to know that the staff at Addenbrookes did everything they could to make things easier for me and that their conduct at what would have been a diffciult time for them as well could not have been improved on. Every subsequent comment in this post should be viewed in the light of this endorsement of Addenbrookes staff.

AGAINST BLAME

There is at least one incident in this post that it would be both incredibly stupid and very destructive to attempt to describe by assigning levels of blame to people, so I am making a conscious effort in this post to keep my language as value neutral as possible. I finish this little section by offering an olive branch to neurotypical readers: I accept RESPONSIBILITY for my autistic meltdown, as in proper English that does not imply that I was actually at fault. By extension I categorically refuse to accept BLAME for the meltdown as that would be admitting to being culpable in the matter.

SUNDAY – EMERGENCY TRIP TO ADDENBROOKES

I had had supper at my aunt’s the previous night and had been told that if my condition changed I was to call her. My condition had changed, and the shaky nature of my phonecall that Sunday morning made it very obvious that I was in some trouble. In the event this necessitated a trip to Accident and Emergency, and although it meant a longer journey by far I opted for Addenbrookes rather than QEH, as they know me there and I have been a patient if theirs for some time. My condition worsened during the journey and a nurse had to assist me from the car into the wheelchair.

It did not take long for the decision to be made to temporarily readmit me as an inpatient. I was initially given Bed 12 on Ward D9, because I was familiar with it, which was a kind thought, although it ended up going pear-shaped.

LEADING UP TO THE MELTDOWN

There was a man in Bed 10 who as well as his other problems was suffering from dementia, which meant that his entire hospital experience consisted of a series of incidents none of which he could understand. He was very noisy in voicing his discontent and confusion, and I got very little sleep that first night, and so by the Monday morning was absolutely exhausted and struggling to cope with the situation in general.

THE MELTDOWN

This section is largely reconstructed the morning after it all happened – I have few direct memories of the meltdown. By late Monday afternoon the noise of the patient with dementia had thoroughly got to me and I was in uncontrollable floods of tears. A meltodwn is difficult to describe, and the best I can do is this:

  1. The dominant feeling is an overpowering level of distress, which I suspect is not just quantitvely but qualitively different from any degree of distress experienced by a neurotypical person.
  2. Behind that is a sense of utter helplessness which again is not experienced anywhere other than during an autistic meltdown.

The reason it is difficuklt to produce direct memories of such things is that there is also a third effect which is analagous to several fuses blowing in one’s brain at the same time.

In what was a very difficult situation the staff responded magnificently. I was moved to another bed in a corner of a four-bed unit, where I would remain for the rest of my stay. 

I am as certain as a hospital environment allows me to be that I was in my new location by 6PM, which means that I have 14 hours unaccounted for, between then and regaining full awareness at about 8 the following morning. I am aware from further reconstruction that Lisa was in charge that night and that she must have done a superb job of looking after me at a very difficult time because I remember her being around.

TUESDAY – FRIDAY

I was much calmer from this point on, and whenever the opportunity arose I made a point of acknowledging all that the staff had done to help me – their response at my time of greatest need could not have been improved on, and the subsequent kindness I was shown over those last few days also had its impact. The treatments I underwent included blood transfusions (my haemoglobin levels were very low indeed at the start of the week, and still someway below healthy levels by the time I was given the last transfusions on Friday morning), an iron infusion to deal with low levels of that substance and my last dose of Bleomycin.

HOME

I got home about 9PM yesterday, but I had two important communications to make to before I could think about bed – one to Karan who has been an absolute brick to put her back in the picture and one to my contact at Tapping House regarding professional support at a PIP session (I will not get through such a session with Capita without professional support and so I had to contact the person most likely to be able to help).