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
Just three pics with this post – I am saving the rest for my next post.
An account of my first visit to Tapping House Hospice and the physio assessment that took place there.
INTRODUCTION
At 11AM today, exactly as planned, a vehicle arrived to collect me and take me to Tapping House Hospice for a an introduction to their physio arrangements. The physio came in person along with the driver. In the rest of this post I will describe what happened.
THE JOURNEY THERE
Major housing developments have opened up a lot of North Lynn in recent years, and we were able to head for the main road to Hillington, the village in which the hospice is situated, by way of Lynn Sport and the industrial area of North Lynn. The journey pased without incident, and the physio then conducted me to the room wherein the sessions will take place when I can start them (next week’s sessions are already full, but it is just possible that I will be able to attend sessions from the week after next).
THE ASSESSMENT
The assessment consisted of a number of parts:
Get up from a chair and sit back down five times in a row.
Stand in front of the chair with my eyes closed and my feet together for 90 seconds – I felt that I was shaking like a leaf when I did this but apparently the reality was less dramatic than what I felt.
Walk to the door leading into the ‘snug’
Walk a short distance, turn around and walk back (the physio neasured the appropriate distance).
Put one foot on a step and bring it back down again five times
Then it was time to sample the equipment – two minutes on the treadmill at its lowest speed, three minutes on a bicycle simulation (it offers much more physical support than a real bike, but you pedal it as if on a bike – my average speed over the three minutes was 14.1kph – just a tick over 8.5mph – a baseline figure against which future attempts can be measured) and a brief introduction the all-over workout machine, which I did not enjoy since my balance has never been the best, and I did not feel secure at any stage.
I think I have missed something as there were supposed to be seven stages, but this is what I remember of the assessment.
OTHER SUGGESTIONS
Louise made some sensible suggestions about outside walking, involving making use of the area immediately outside my bungalow, which I shall put into practice from tomorrow (weather permitting) – I did actually manage a visit to the very local shop yesterday, but it was tiring. She also helped me with some advice on regulating the breathing, which I shall endeavour to make full use of.
HOMEWARD BOUND
The journey home passed uneventfully, and although we had taken the precaution of bringing the wheelchair along for the ride it proved to be unnecessary, and we probably won’t bother with it next time I go to Tapping House. I enjoyed my first visit to the hospice, and look forward with more enthusiasm than apprehension to getting involved in group physio sessions once there is a space for me.
PHOTOGRAPHS
Here are some photographs taken today:
Pot outside the main entrance (2 pics)
A nice map of Norfolk displayed above the reception desk.
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:
These three metal panels are along the path that leads from the road to the entrance to the treatment centre.
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.
Regular readers will be aware that I have had a tough time lately, including two unscheduled visitsTHto my local hospital. It was therefore with feelings of some trepidation that I approached my scheduled visit to Addenbrookes yesterday. I will take you through what happened at various stages of the day in the rest of this post.
CONSULTATION WITH DR MAZHAR
The encouraging news from this session was that my tumour markers are continuing to fall (having at one stage been up in the hundreds of thousands they are now down at 20). Immediately after this session I went for a chest x-ray, preparatory to an afternoon appintment with a respiratory specialist.
THE RESPIRATORY SPECIALIST
Given my situation the news from this appointment could have been anything from dreadful up to reasonable (given the known state of my lungs it was not going be good on any normal definition of that word). In the event the news was, to adapt a line from S J Simon’s “Why You Lose at Bridge”, the best news possible – the lung infection had cleared up, and it is virtually certain that the main problem in my lungs is not, as some had feared, a case of Bleomycin toxicity. It is almost certainly caused by small scale haemorrhaging (the lungs act like a sponge, soaking up the loose blood, which causes some problems but explains why there is little external evidence in such cases). A CT scan has been booked to further check this out, and if warranted this will be followed by a bronchoscopy.
THE CURRENT SITUATION
My physical state is improving – while I found walking around the hospital tiring I did not actually need to stop at any point, and I never felt like I was close to trouble. Since I went public about having experienced such things I have had no further anxiety/ panic attacks (and given both my recent circumstances and my mental health history it is no great surprise that I did experience such things). The mild tranquilizers (Diazepam for those interested in exact details) that my doctor provided to help with this issue have worked so far. There is a long way to go yet, but at least at the moment I seem to be heading in the right direction.
PHOTOGRAPHS
Here are some photographs from yesterday…
The West Winch village signThis magnificent map adorns one wall of the waiting room for the respiratory clinic.The first of two shots I got of Ely Cathedral during the return journey.
An account of the last few days, explaining the current problems I am facing (regular readers will be well aware that I have been taking a battering in various ways over the last five months).
INTRODUCTION
Earlier this week I came out of one hospital visit caused by breathlessness only to go almost straight back in. Now I am back out again, but there are still problems – only they are mental rather than physical.
THE BOOMERANG DAY
On Tuesday I was discharged from Queen Elizabeth Hospital and came home. That evening when considering going to bed I became breathless, tested by SP02 on a machine I now have for that purpose, got a low reading and found myself heading back to A&E. I was tested there and we established that my machine always reads one or two points too low, and that at the hospital there was no major issue with my breathing. After a six hour wait for further developments I was moved to a bed, and I remained at the hospital until yesterday.
YESTERDAY
Yesterday evening, when I headed for bed, having made sure that my SP02 was not low, I became breathless just from thinking about getting into bed. I called my father, and with his assistance, having identified this as a panic attack, I eventually did get to sleep. I was up quite late this morning, but got my coffee going OK and checked in on the computer.
TODAY – BREAKFAST PROBLEMS
I was just preparing my breakfast (the cereal was in the bowl and I was opening the milk) when I had another breathlessness related panic attack and called my father for assistance. He came round, I ate the breakfast and have subsequently managed to get dressed and go out with him for a very short walk. I have an appointment at my GP surgery at 4:20PM to discuss my mental health situation (I am definitely in need of help in this department) and see what can be done about it.
TOMORROW AND SUNDAY
These are the two days that will pose the most problems – I will be at Addenbrookes for most of Monday, and there are plans for a visit from Tapping House on Tuesday. That leaves something to be done about the weekend.
FINAL THOUGHTS
My physical health is probably is good, given what has happened over the last few months, as it could be, but mentally I am struggling. I do not know why it is these recent incidents that have had this effect, but undoubtedly they have, and something needs to be done – I hope the doctor at my surgery can help with this.
I have just got back from a brief stay (less than 48 hours in total) at the Queen Elizabeth Hospital in King’s Lynn, and this post describes what happened, covering the events of Sunday in some detail as a lead -up.
A GOOD SUNDAY…
Sunday morning started exceptionally well, with a shopping trip to Sainsbury’s, during which I walked around the store. I was also able to carry my own shopping from the car to the bungalow and unpack it myself.
I then had a full Sunday lunch at my aunt’s house, stayed to watch the rugby match between Italy and Ireland (won by Ireland even though they never produced anything approaching their best) and went home still feeling well and happy.
I had my supper and was getting ready for an early night (preparatory to a women’s ODI in India) when the situation changed.
…UNTIL ABOUT 7:30PM
Changing from day clothes into my pyjamas tired me considerably, and my breathing became difficult. I returned to my armchair in the living room to give my breathing a chance to regularise itself, and about an hour later I thought it had done so, and headed back to the bedroom. Unfortunately even that short walk was enough to cause further breathing issues, and at that point I phoned my father who was staying at my aunt’s place. A short time later we were on our way to A&E.
A check not long after arrival there confirmed that it was not a false alarm – my oxygen saturation was down to 89, so I was put on extra oxygen and a bed was found for me.
The usual gamut of scans and tests were carried out over the following 24 hours, and late yesterday evening my oxygen feed was reduced. At about 9:30 this morning I was taken off the oxygen altogether. A test at about lunchtime confirmed that my unassisted oxyegn saturation levels were just high enough for me to be safely discharged, and at about 3:30PM my father gave me a lift home, where I am now resting up.
I have just had a visit from Louise, a therapist at Tapping House to fit a new toilet seat and frame to make it easier for me to use the toilet, and to discuss possibilities re therapy at Tapping House. This post attempts to give an overview of the situation.
MY CURRENT STATE OF HEALTH
My body appears to have responded well overall to the cancer treatments I have endured over the last few months – as I have mentioned elsewhere the tumour counts appear to be regularly falling. I am currently experiencing breathing issues which could be caused by any of several possibly linked issues:
One of the areas worst affected by the tumours were my lungs, and although the tumours there appear to have almost gone the current issues could still relate back to the cancer.
One of the drugs used in my chemotherapy is known to sometimes have an adverse effect on chests and lungs, and it is possible that this is a contributory factor.
I have recently had a lung infection, and currently have a mild chest infection for which I am on antibiotics, and there is no doubt that both of these have contributed to the problems.
Finally I have through necessity been been very inactive for some time, and this may also partially explain why such activity as I am currently capable of tends to leave me breathless.
The therapist has given me some tips on breathing and on posture when on my feet (e.g in the kitchen), and will be in contact with me again in about a week to see if I am improving, with a view if I am to starting me on physio sessions at Tapping House. She has also indicated that she could take me out in the wheelchair for sessions in which I sit for some of the time and walk for some of the time (the weather is exceptionally mild for an English February, and getting outside more would be good for me).
My confidence is starting to improve as time goes by and I do more things without falling or having other accidents.
At some stage, when I am strong enough to go through such a procedure, there remains an operation to be endured, and that will probably entail some recovery time as well.
For the time being I will be seeing at least one carer once per day, which remains a necessity as it ensures that someone who can presumably recognise warning signs will be seeing me daily, and one hopes will be ready to take action if needed.
With a fair wind I could be starting therapy sessions in just over a week, and I hope to spending more time out of the bungalow and to be more physically active in the not too distant future.
PHOTOGRAPHS
A card from my friends at NAS West Norfolk
A couple of illustrations from George Smoot’s “Wrinkles in Time”
Comparison between two antique maps of Norfolk – this one in my aunt’s house (four images)…
…and this one which belonged to my grandparents is now on display in my bungalow (five images)
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…
A windmill on the way to Addenbrookes.The first of three pictures taken in the hospital.This bust is of Edward Douty.
A pride flag in the hospital car park.
Ely CathedralThe spire of St Nicholas Chapel (1st of today’s pictures)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).
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:
Creating music during the sessions.
Demonstrating knowledge and understanding of how to create that music and being able to share with the group what one was doing.
Providing a record of an arts related event that one had attended.
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.
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.
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“
MauritsCornelis 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.
MauritsCornelis 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.
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”, a personal favourite“The Monks”“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:
Me with my certificate, with Oliver from Musical Keys next to me (the black beanie covers the most visible effect of the intensive chemo)A group shotA close-up of the certificate.
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:
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).
aspiblog 