Christmas Update

A brief account of my Christmas period and how I managed to enjoy it in spite of limitations imposed by current state of health.

INTRODUCTION

In this post I will tell the story of my activities since Monday, and the continuing tale of rhe improvement in my state of health and happiness. There are plenty of accompanying pictures. 

MONDAY – MAINLY ADDENBROOKES

Unlike the previous Monday this day although still fairly long went basically smoothly, with my treatments running exactly as planned. I was by this stage sufficiently improved to walk around the main hospital building rather than using a wheelchair. In preparation for the day I had selected three books from my shelves, and this proved a wise choice as I read all three while at the hospital.

I took some photos of some of the artwork on display at Addenbrookes as well…

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These displays of famous people associated with Cambridge were created by the legendary Quentin Blake who cut his teeth as Roald Dahl’s illustrator.

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I am particularly glad to see Rosalind Franklin credited in this panel (something neither Watson nor Crick did at the time after being shown her work without her having been consulted)

CHRISTMAS DAY – COLUMBIA WAY AND NELSON STREET

I was not entirely sure how I would cope with Christmas Day itself. My sister arrived at my home to pick me up at about 10AM, dropped me at Nelson Street where my aunt lives and the went to wash, change and wake up my nephew (the latter being by some way the hardest task!). A cup of coffee taken in the kitchen was a good start. Managing the stairs to use the toilet (had this proved beyond me there was a downstairs flat we could have accessed) was also good news. 

Lunch was excellent, and in accordance with the advice of Research Nurse Rebecca Bradley I consumed limited quantities of alcohol (one small glass of fizz and another of white wine).

After lunch we opened the presents, which went very well. The last present was unwrapped just before 4PM. At this point I decided to call it a day and get my lift home. I walked to Boal Quay car park where the car was waiting. 

Here are some pictures from the first part of Christmas Day…

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The first five pictures were taken at my bungalow in the morning.

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The cup I had my coffee in at Helen’s
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Presents laid out.

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Close up shots of the woodburner (using the zoom lens)

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A tiling pattern in the kitchen.
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Mr President put in an appearance among the presents!

One of my presents (I had already had a lot of stuff in advance, so most of the stuff I got on the day was small) was a stamp album with a few “Hagner” style pages. I devoted a little time to displaying some of the stamps that John from Musical Keys had given me while I was in hospital, and also to selecting some postcards to go in a little display album I had for them. I have yet to photograph the postcards, but here are some stamp pictures…

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Railway stamps.
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Insects and Birds
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Insects close up.
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Animals, Cras, Boats and Mountains
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Animals close up

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Mixed stamps.

I took one more picture, of my largest railway map, spread out on the carpet:

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BOXING DAY

My Boxing Day began on Australian time as I wanted to listen to the test match from the MCG. For a Pom it was a very satisfying listen as India finished day 1 strongly placed on 215-2 with Pujara and Kohli going well together. So far today is going quite well – the district nurse was happy with my temperature and blood pressure readings (the latter at 118/69 were about as good as they have been anytime in the last two months) and I although tired I am not experiencing any sort of adverse reaction to yesterday.

Autism and Cancer

Some early thoughts on autism and cancer.

INTRODUCTION

This post will consist of some early thoughts about Autism and Cancer and also some pictures from my new abode. However before getting into the main meat of the post there is an issue to address briefly first…

AUTISM AND FUNCTION LEVEL LABELS

In brief: DO NOT USE!! For more detail read the rest of this section. Before moving on to my onw thoughts a couple of honourable mentions: the Neurodivergent Rebel has posted some good stuff about the abuse of function level labels in relation to autism and Laina via both thesilentwave.wordpress.com and her sharing site lainascollections has also covered the issue.

I am often labelled as a high functioning autistic (indeed readers of this site will be aware that I was already into my 30s before being recognized as autistic at all) but that is highly misleading and dangerous. People noting my overall intelligence and articulateness and the fact that I devour books at rapid rate assume I need little support. Not true – there are some things that I struggle badly with and where support is needed. The “High Functioning” label is at best misleading and at worst it is downright dangerous.

MANAGING AUTISM AND CANCER

Managing cancer is a challenge but considered in isolation one that can be handled. Managing autism is sometimes a challenge (and sometimes autism works in my favour), and taken in isolation it is not too difficult. Managing cancer through the prism of autism is an enormous challenge. Apart from my regular blood thinning injections (I had two blood clots while being treated in hospital), which are still administered by a district nurse I am now largely responsible for taking my own medications of which there are huge quantities.  I also need to do things like monitor body temperature (currently seems to be stabilised at 36.1 C) and weight (one effect of being so ill is that now weigh less than at any time since my mid-teens. 

ADDENBROOKES ACKNOWLEDGEMENT

A small army of staff at Addenbrookes went way above and beyond the call of duty in looking after me and treating me during the worst of the illness. To name names would be invidious – you all know who you are and you are all absolute heroes. Understaffed and underfunded as it is the NHS is kept functioning by the efforts of people like this, who can still crack a smile when they have been rushed off their feet for 13 hours straight.

HOSPITAL TALES: WALKING STRENGTH BACK INTO THE LEGS

For about the first two weeks I spent at Addenbrookes I was effectively completely immobile (for a few days I was wired up to an oxygen mask), and for about a week before that I had hardly been mobile at all, so I lost a lot of strength from my legs. Once I was able to be mobile I took to walking up and down the ward when I felt strong enough, starting with small distances and working my way up gradually. Before I finished I could on a good day walk up and down the ward 20 times without stopping. I felt a benefit of this yesterday when I did a small amount of walking in King’s Lynn town centre to do my christmas shopping. 

PHOTOGRAPHS

I promised some pictures and here they are:

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Cricket Corner! (some of my cricket books are on other shelves as well but this is most of them)
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Display items in sitting room

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Thomas’ Cabinet of Curiosities (units assembled by Simon from NAS, treasures arranged by my father) – named in honour of Ian Stewart;s “Cabinet of Mathematical Curiosities”.
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A close up of one section.

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1907 railway map (facsimile)

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The Morden Map of Norfolk in its new niche.
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Two views through the windows to finish – being able to look straight at green space is a privilege.

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Hello Again Everyone

A brief account of my illness, treatment and fledlgling recovery from cancer.

INTRODUCTION

I have been undergoing treatment for cancer under the aegis of Addenbrooke’s Hospital, Cambridge for over two months, and today is the first time sime I started receiving hospital treatment that I have been online (I have done a massive bulk delete of accumulated emails and will now start paying proper attention once again. In the rest of this post I will set out a rough timeline of events over the course of this illness. Unusually for one of my posts there will be no pictures.

WEEK 0 – THE ILLNESS TAKES HOLD

On September 29th I attended the wedding of a cousin in Sheffield. This was the last occasion on which I recall feeling truly well. During the following week I became noticeably ill, on on the Friday I left work early (an almost unheard of thing for me) because I just could not go on. On Saturday morning I cried off an intended visit to my mother at Godalming where she has recently been working because I was too ill to even consider it. On the Sunday evening having not ingested anything other than water since Friday I projectile vomited and realised I was in serious trouble, although not as yet just how serious.

WEEK 1 – TWO NARROW ESCAPES

On the Monday I collapsed between the bathroom and the bedroom of my old flat at about lunchtime, and by the evening of that day was in such a dreadful state that I could only be got into an ambulance by being out on a saline drip and assisted down the stairs that separated me from street level. Another day before receiving hospital treatment might well have been my last. On the Friday of that week, my body still unable to accept anyhthing other than fluids, but the real problem now known about I was referred on from QEH (my local hospital) to Addenbrookes (one of the best hospitals in the world for cancer treatment) just in time to avoid an operation that in my weakened state would very likely have finished me. The root cause of the mischief was a hugely swollen testicular tumour that had metastasized into large tumours on each lung (one of these was threatening a vein), a small tumour on the spleen and four small tumours in the brain.

WEEKS 2-9 – IN PATIENT AT ADDENBROOKES

I accepted the opportunity to be part of a clinical trial at Addenbrooke’s and by good fortune (and yes, I regard it as such, gruelling though the resulting treatment program was) got put into the group receiving accelerated treatment (chemo on a two-week rather than the usual three-week cycle). I am pleased that my treatment will have contributed in a small way to the advance of medical science (similarly I was delighted to be of assistance to student nurses and doctors when they accompanied their mentors – why wouldn’t I want the NHS workers of the future to be better able to do their jobs?!)

My treatment consisted of five days of intensive chemo one week, followed by a dose of bleomycin the Monday afterwards (always the toughest day of the cycle) and then the rest of week 2 of the cycle quiet. I have also been on huge quantites of pills and have had many scans and x-rays to monitor progress. 

Because my flat was unsuitable in several ways for someone convalescing from cancer (isolated by the stairs that separate it from street level and afflicted by damp) somewhere had to be found for me to go instead, and faced with a crisis the local council came up trumps with a bungalow just north of the town centre on an estate run by Freebridge Community Housing (the nearest there is to social housing in Tory Britain). Because the tenancy of the bungalow only became available just as I was due my fourth and last week of intensive chemo I remained an in patient until after the follow-up bleomycin which was on Tuesday December 11th (delayed by the fact that on the Monday my platelet count was too low). That same evening I was taken to my new home and became an outpatient.

WEEK 10 ONWARDS – OUT PATIENT

I remain extremely prone to tiredness and although I walk about my bungalow with no great difficulty I need assistance to venture outside. However, I had a very long Monday at Addenbrookes, because I needed more blood transfusions (the amount of new blood I have been given in the course of this illness would send Dracula green with envy) in addition to the bleomycin, and yesterday I not only managed to stay out of bed the whole day for the first time since the illness took hold, I was also able to watch and enjoy the autism friendly performance of the Christmas pantomime at the Corn Exchange. 

THE FUTURE

I am on the mend, though it will be a while before I am back to anything like my old form. My camera battery is charging and I hope to be sharing some new pictures with you before very long. My thanks to all who have waited patiently for the resumption of activity on this blog, and especial thanks to those who have read the whole of this relaunch post.