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).
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).
An account of a very busy and important day in my life, intended to be written as positively as possible.
I am finally relaxing at home after being on the go since about 10:30AM today with various things. This has been a very important and very tiring day for me.
DOCTORS SURGERY 1: BLOOD TEST FOR MAGNESIUM COUNT
Owing to the fact that I was nearly out of chewable magnesium pills (I have been on three a day among the large number of medications I take) I was required to attend the doctor’s surgery for a blood test to assess whether I needed more magnesium or not. This was followed by a return home for…
DISCUSSIONS WITH PEOPLE FROM TAPPING HOUSE RE ONGOING SUPPORT AND PALLIATIVE CARE
This session, which ended up lasting for over an hour, was easily the most constructive I have had with any sort of support workers over the whole time since I became ill. They listened and understood as I told them about the negative effects autism has on me specifically and how that impacts on my support needs. They made some wonderdul suggestions about how best to help me, and it is quite clear that are extremely serious about doing everything possible to support me through my recovery.
I actually felt, as I have not in other circumstances over these few months, that I was being regarded as of interest as a human being, not merely as a patient or as an example of an autistic person (though recognition of this last is hugely important and thoroughly welcomed).
I now believe I can look to the future in the certainty that support which is tailored to my specific needs will be available to me, and that is HUGE news.
LUNCH WITH MY AUNT
When my mother and I initially planned today we had intended to have lunch at Pizza Express, but the tightening of the schedule made that an impossibility. My aunt provided an excellent lunch and as proof that my appetite is returning I was able to eat two platefuls of food. Then it was time for…
My mother had arranged an appointment at Vision Express in King’s Lynn for me to have my eyes properly tested. My current spectacles, which will become my back-up pair in about ten days time definitely address my astimgatism, but they do not fully address the other eye issue I have that lenses can correct, my mild myopia.
I accepted the advice of the experts and for a considerable price went for varifocals tailored to the needs of an IT Professional (which when I am well enough to work is what I what I am).
There do not appear to be any really serious problems with my eyes, although as a safety measure the optometrist made a non-urgent referral to Queen Elizabeth Hospital (which means I shall see them in about six months time – they are permanently struggling).
All in all I was at the opticians for nearly two hours, with a lot of getting up and down and sitting in chairs that may look nice but don’t actually offer a lot of support.
After this it was time for a…
A TOP UP SHOP AT SAINSBURY’S
This was accomplished with a minimum of fuss once we had got there, although there was an incident in the car park that was nearly very unpleasant indeed. A blue van whose driver was clearly about a million light years away mentally pulled out right across our car (it was our right of way – he was bang out out of order), and we came much to close to a crash (of which I would have borne the brunt) for comfort. My mother limited her official response to a single blast on the horn. I can only hope that this near miss woke the driver up properly and he was more careful for the rest of his journey.
We were sufficiently quick shopping to have time for a very short break having…
HOT DRINKS AT MY AUNTS HOUSE
These had to consumed fairly rapidly because of yet another late addition to our busy schedule. I had developed an ache in my left thigh area, which necessitated…
THE DOCTOR’S SURGERY 2: BLOOD TEST FOR POTENTIAL CLOTTING
During my time as an in-patient I had a blood clot around the original site of my piccline, in my left arm, and then a little later an episode of severe chest pain which was mainly caused by pericarditis but contributed to by a small pulmonary embolism, so the possibility of a clot in an unusual location had to be taken seriously.
Thus a tiny sampleof blood was taken from one of my fingers to be tested. Fortunately it came back negative. I have been prescribed extra pain killers but apart from the discomfort it causes there does not be anything serious about the problem with my left leg.
HOME AND PHOTOGRAPHS
Finally, with the clock close to 6PM I was able to leave the surgery and be driven home. I am now somewhat rested from my exertions, and in less pain. Finally for, those of you who have made it to the end, here are some pictures:
An optimistic account of the latest milestone in my ongoing recovery from cancer.
This is an optimistically titled post , borrowing a metaphor from my favourite sport, based on events from today. As I hope you will observe the optimism has some justification…
A TOP UP SHOP AND GAYWOOD LIBRARY
I was running out of coffee and had already decided that I would venture to the local mini supermarket to see if I could stock up there. I decided once I had sallied forth that if I felt reasonable when leaving the shop I would do some extra walking by way of asserting my continued recovery. The purchases duly made (I also bought a couple of biros as I have something of a shortage in that department) I headed off in the general direction of Gaywood Library (smaller but also closer than the main Kings Lynn library). I selected three books from the library (restricting myself to an easily carryable number), gave myself a short restorative break by logging into one of the computers to do some stuff there and then completed the process of borrowing the books.
I walked back by way of a stretch of the Gaywood River, some meadow and the Discovery Centre, arriving back at Columbia Way at about 12:45. I was out and about for just over the hour, meaning that my total time spentg walking was about 40 minutes.
Although I am quite tired from this little excursion I am also glad that I made it, and mark it off as another staging post in the long process of recovery.
Here are the photographs from my little expedition:
Accounts of a meal out last night and of the state of play at the MCG (very satisfying for a Pom, who by default supports Australia’s opponents!).
This post deals with two unrelated events – last night’s supper at The Market Bistro in King’s Lynn (another staging post in my convalescence from cancer – coping with an evening out in public, which for an autistic person can be a challenge even at the best of times) and the amazing happenings overnight UK time at the Melbourne Cricket Ground. I have some pictures as well.
SUPPER AT THE MARKET BISTRO
I intended to eat a full meal and have the one alcoholic drink I can allow myself at present. My father arrived to give me a lift there as planned at about 6:30. Then he went to collect my sister from West Lynn where she was staying, a taxi firm having her down.
The food was excellent – I ate an amuse bouche but declined the bread and butter as I had ordered two courses to which I intended to do full justice (and succeeded). My starter was a duck terrine covered by a potato cage and missing (at my specific request) the egg that should have been part of it. It was delicious, though an incongruously small portion to be served in the middle of a monster sized plate. For the main I opted for pork belly accompanied by smoked beetroot, various salad type vegetables and game chips. It was excellent in every respect, and judging from the fact that every plate at the table was clean by the time we finished so was everyone else’s. I washed the meal down with a beer that was brewed in Wisbech and was absolutely delicious (and at 5% alcohol not fiendishly strong – I rejected a couple of other options as being too strong in the circumstances).
By the time I drained the last of the beer it was just after 8:30PM and I was feeling the need for home. My father gave me a lift back, and that was the end of my activity for the day.
INDIA TAKE CONTROL AT THE MCG
Over the first two days play in the Boxing Day test match at the MCG it looked like a repeat of last year’s Ashes match at the same ground with the drop-in pitch (in spite of retaining its name the MCG is preimarily an Aussie Rules venue these days) apparently lacking any pace or life. Bowlers could not get wickets and the lack of pace meant that batsmen were scoring slowly. Going into day three the scoreboard read India 443-7D, Australia 8-0.
Suddenly things started to happen. First Jasprit Bumrah bowled magnificently to record a test best 6-33 as Australia were rock ‘n’ rolled for 151. India then decided that a lead of 292 was not quite sufficient to go for the innings win and batted a second time. Patrick Cummins proceeded to knock the top of that second innings, backed up by some nasty stuff from Josh Hazlewood (both bowlers regularly propel the ball at over 145 kilometres per hour), and India closed the day at 54-5 in their second innings, a lead of 346, and almost certainly given the difficulties of chasing big runs in the final innings a victory awaiting. Nonetheless I think Kohli was wrong not to enforce the follow on – I would have much preferred to see him go for the quick kill. In the context of test cricket I would decline to enforce the follow on only if one up in the final match of a series, which this is not. Out of some 2,500 test matches a mere three have been won by teams who were made to follow on – England did it aided by the weather at Sydney in 1894, England did it again at Headingley in 1981 when Ian Botham famously “gave it some humpty” and Bob Willis then bowled like a man possessed to take 8-43 and then there was the Kolkata match when Laxman made 281, Dravid 180, India declared their second innings at 657-7 and dismissed a demoralised Australia for 212 to win by 171 runs (yes folks, the only test team ever to have lost a test match after enforcing the follow on are the Aussies, victims on the only three occasions such a comeback happened).
A brief account of my Christmas period and how I managed to enjoy it in spite of limitations imposed by current state of health.
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…
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…
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…
I took one more picture, of my largest railway map, spread out on the carpet:
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.
A brief account of another staging post on my road to recovery.
This afternoon saw another staging post in my receovery from cancer…
MY FIRST INDEPENDENT OUTDOOR WALK SINCE BECOMING ILL
Just before 2PM this afternoon I left my bungalow for a short walk. Although fairly cold and very grey the weather here is by no means terrible given that we are at the back end of December, so having donned by black beanie to cover the most obvious signs of the treatment that I have been undergoing I was ready to sally forth. I was out and about for approximately 15 minutes and save for occasional photography stops was walking all that time on my unaided own. Here are some pictures…
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 lainascollectionshas 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.
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.