Neurology Appointment and Other Stuff

A brief account of my appointment with the neurologist at QEH and of the arrival of my new computer.

INTRODUCTION

Yesterday I attended an appointment with the neurologist at Queen Elizabeth Hospital, and I also dropped my old computer at PC World so that they could transfer stuff from it to my new computer, and my aunt picked up both machines from them today.

THE NEUROLOGIST APPOINTMENT

This went well. The dizziness and disorientation I experienced as an immediate response to my new anti-seizure medication appears to relate to a problem with my inner ear, which meant that organizing an appointment with the audiologists at Addenbrooke’s became of increased importance. This appointment is booked for 11:30 on June 3rd, immediately after I have other appointments at Addnebrooke’s, t0 minimize the number of journeys to and from Cambridge. I also have in case of emergency a medication for taking if the dizziness gets really bad. I am greatly relieved to have some answers and the prospect of further answers at the audiology appointment.

WITHOUT THE COMPUTER

Yesterday afternoon and evening I had a lot of time without access to a computer, and I filled some of it by mounting postcards for display until I ran out of glue dots (I had three postcards still to mount to complete the intended display, as you will see), and I have some stamps that will need the same treatment if I am to display them. This morning I used my phone to open facebook and post a message on the NAS West Norfolk Commitee page. Here are some pictures from yesterday:

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As these pictures show depending on layout considerations one can mount three or four postcards on each side of an A4 sheet, meaning that each section of a Poundland display file contains 6, 7 or 8 postcards according to layout.

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These are the three I have still to mount…
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…and I took the opportunity to get a close-up of this one.

OTHER PHOTOGRAPHS

Of course these are not the only photographs I took…

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This is an unedited photo…
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…and this is the edited version.

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Unedited…
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…Edited

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Unedited…
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…and edited

A Week In Hospital

An explanation of the events the between caused me to spend most of a week in hospital.

INTRODUCTION

In this post I will be explaining why there has been a hiatus in this blog. I hope that normal posting will be resumed from tomorrow.

HIATUS PART ONE: PHYSICAL SICKNESS

On Monday morning everything went OK until breakfast. The carer arrived and I was still OK, though feeling a bit tired. Then just after the carer left I was sick. My entire breakfast came back up. My aunt came round, and helped sort things out, another carer cleaned up the mess and washed the stuff thatr needed washing. My aunt left at about 11:30. Between then and her return around 1PM I was sick twice more. There was then another episode while decisions were being made about what to do. Near the end of the trip to Addenbrookes I brought up some pure bile. 

At Addenbrookes I was admitted overnight, given an x-ray and a CT scan and they decided that the most likely explanation was a partial seizure. I was discharged the following day, with a new anti-seizure medication added to my regular medications. 

On Wednesday I woke up feeling OK, got up to open the curtains and nearly fell out of bed in the process. I returned to bed to read for a bit before getting up, but by disorientation and sense that the room was spinning did not go away. I was not able to concentrate of the book for very long, and went back to sleep for a period. The carer called an ambulance for me, and as there was no way I could be got into my aunt’s car and an emergency ambulance can only take one to the nearest hospital I was off to QEH, although efforts were made to get me moved to Addenbrookes. I was taken off the anti-seizure pill as what I had suffered was known to produce the symptoms I had experienced as a common side effect. I was then put back on it to see if I could cope and I could. They were originally going to keep me in until Tuesday so that I could see the neurologist, but eventually an outpatient appointment was made for 10AM on Wednesday and I was discharged yesterday. 

Our misgivings about QEH notwithstanding the staff were excellent and the care and support I received was splendid. 

I had an uninterrupted night’s sleep last night and a good start to the day this morning, and have had a good day so far today. On the way to my aunt’s for lunch today I overlapped with the end of the Great East Anglian Run (GEAR), but through being in hospital so much recently I had missed the fact that NAS West Norfolk had arranged a designated meeting point, so although I had a chance encounter with one of my fellow committee members I was not part of our presence at the event, something which I regret and for which I take this opportunity to publicly apologise.

I hope that the appointment with the neurologist sheds more light on what has been going on and that we can move forward from there.

A Brief Visit to Addenbrookes

An account of my absence over this weekend.

INTRODUCTION

This is going to be a brief post to put people in the picture about my current situation.

THE EVENTS OF THE WEEKEND

After a good Friday I woke up on Saturday morning feeling dreadful. The trouble was a headache. At about 7:30 I took two paracetamol, hoping that they would ease it and I would be able to function something approaching properly. By 9AM it was clear that such would not be the case and I phoned my aunt to request her company. She called 111, and the paramedics who came decided that a visit to hospital was warranted (I have secondary tumours in the brain, so a headache cannot be ignored). After speaking to my parents my aunt decided that rather than have the paramedics take me to QEH (who have blotted their copybooks more than once since I become ill) she would drive me to Addenbrooke’s, who were informed that I was on the way.

At Addenbrookes after a check of my vital signs revealed nothing to worry about I was taken for a CT Scan and then temporarily admitted to the very familiar surroundings of Ward D9. The scan did not reveal anything that it shouldn’t, and by Sunday morning the headache had gone and I was feeling a lot better. By that stage the only question was how long it would take to attend to necessary bits and pieces before I could be discharged, and by 2PM I was in my parents car and we were heading to King’s Lynn.

Normal blogging service should be resumed from tomorrow.

I have no pictures of my own to share, but here is a graphic posted on twitter by Anne Memmott for Autism Acceptance/Appreciation Month:

Autism Acceptance

 

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).