Health Update

A brief account of what happened in my appointment at Addenbrookes today.

INTRODUCTION

This will be a brief post related to today’s visit to see my team at Addenbrookes hospital. There will be a more substantial post coming later about a different subject.

GOOD NEWS IN THE CIRCUMSTANCES

Regular readers of this blog will be well aware that healthwise I am in a position analogous to the person who asked an Irishman for directions and was told “Oi wouldn’t have started from here”. In view of that the fact that the preliminary finding from my bronchoscopy is that there has been some bleeding in the lung qualifies as good news, since it is unquestionably better than the alternatives. Also, the fact the Dr Mazhar decided that he does not to see me again for four weeks can only be regarded as positive news. The operation to remove the testicle that was the origin of all the trouble is probably still a couple of months away.

PHOTOGRAPHS

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Just three pics with this post – I am saving the rest for my next post.

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Bronchoscopy

An account of todays visit to Addnebrookes for a bronchoscopy.

INTRODUCTION

This post deals with the latest medical procedure I have undergone in the course of efforts to help me recover from cancer. Some of you may find parts of what follows to be strong meat.

PREPARATION

In a letter liberally laced with dire warnings of what would happen if I did not follow the stipulated requirements absolutely 100% I was required to present myself at the Treatment Centre at Addenbrookes (a place I have not been before) by 9AM on Wednesday 13th March (i.e. today). I was also required to have someone else present as the letter made it clear that I would not in a fit state to travel back unassisted after the procedure. In view of the time we would have to leave King’s Lynn this meant a night in the camper van for my father. 

Since I shrewdly suspected that the day would entail a lot of waiting around my preparation included supplying myself with no fewer than four books to ensure that I did not run out (for the record I was in to the third of them before the day was done) of ways to fill in the time while things weren’t happening.

ARRIVAL

Having allowed generously for traffic jams and only actually encountered one, on the approach to the hospital, we arrived considerably ahead of schedule. Once we had got to the third floor of the building and located the area where the bronchoscopy was to take place there was a questionnaire to fill in, and the usual quantity of paperwork to be filled in and signed. Also, to enable the procedure to be carried out I had to have a cannula inserted. Then there was some more waiting before the doctor was ready to perform the procedure.

THE PROCEDURE

Once I had been taken through the list of possible side effects in order of likelihood and increasing severity it was time to begin in earnest. A local anaesthetic was sprayed into the back of my throat to deaden the feeling in that area. Allegedly it tastes like banana, to which I say that those classifying said taste have not actually sampled it – it bears no resemblance to banana. Then a sedative was injected through my cannula to help relax me for the procedure – it worked very well, and I came round with the procedure safely completed. A couple of observation sessions and a bit of waiting later I was able to set off, equipped with another letter warning me off food or drink before 12:45PM and off alcohol for 24 hours. 

The journey home ensured that I was free of temptation until significantly after the 12:45 cut off. As of this moment the only side effects I have experienced are a very slightly sore throat and a bit of coughing. The results of this procedure can take up to a week to come through, so they may or may not be available when I see my main team on Monday. 

PHOTOGRAPHS

A new place means a new opportunity for photographs (unless it is very dull indeed), and here are some I took during the day:

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These three metal panels are along the path that leads from the road to the entrance to the treatment centre.

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This item rotates regularly, and is a fascinating site (I have held some of todays pics back for my next blog post, including three more of this to follow the three I show here.

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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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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). 

A Week and a Half

A brief explanation of the last week and a half.

INTRODUCTION

Followers of this blog will know that I have been seriously ill recently. A week ago on Sunday things took a bad turn and I was readmitted to Addenbrookes with what turned out to be a lung infection. Last night I was discharged and I am now settling back into home life.

SOME WORDS FOR NAS WEST NORFOLK

NAS West Norfolk have been increibly supportive through a very difficult period in my life, and I am well aware that the events of the last week and a half will have caused them yet more worry. I am very grateful for everything they have done for me, and I regret that I was taken ill so suddenly as to be unable to explain the situation in advance.

FUTURE PLANS FOR THIS BLOG

I will in due course be putting up a more detailed post about my recent stay in Addenbrookes, and I have a plan for a long series of cricket posts interleaving with other stuff on the blog. I will have various other things to share, including an event which is taking place tomorrow, and which thankfully I shall be able to attend. For the moment, my apologies for anything I have missed in the last week and a half, and I sincerely hope that normal service will be resuming fairly soon.

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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