A special day...

I awoke early.
After 5 days of tough chemo living, I could feel a change in my limbs.
My legs and arms, my chest and stomach, my feet; I could feel a new health... I knew my chemo week had past... I can't tell you how good that feels but 'so sweet' just begins to describe it.
I looked over at Chrissy and knew today would be lovely, but I had no idea how special.
By 10am. I was downstairs, breakfasted and medicated.
I ordered a novel I know won't be published till the 2nd August: the new Jasper Fforde novel. Confidence.
I'd a wonderful morning to begin with, with my darling, Chrissy Sue, as I was enjoying just being better.
I also had a lovely visitor for the England game, my daughter Becky. I havent seen her in ages and missed her so much. It was just great chatting to her too. She talks so honestly about things now, open about her life, and it's a wonderful feeling to understand her so much better.
She was sketching me and when she had a break I asked if I could see her sketchbook.
The sketch of me was very honest, so I was just grateful she had a chance to do it.
But Oh God, though, her drawings are incredible.
I looked at her female nudes in awe. I remember struggling hard to draw and paint these in my 20's and it is such a hard subject. For Becky? She draws the human form with ease.  It just comes naturally, her talent pours out with seemingly no effort.
The match was great too. England v Sweden. I adore Jesse Lingard and, as usual, he oozed class as he kept the team moving with rhythm and purpose. Some players just have a way of taking a team forwards on the pitch. A little like Iniesta.
He brings warmth and trust too. What a player.
Well, we won, of course. Raheem Sterling was excellent and we flowed through to the semi finals almost with ease, as these two magicians found all the gaps and opened the channels for a team flooding operation that just kept flowing
At the end, too, Sarah came over! She is still a bit coldy and Ed a lot, but it was so lovely to see her for the first time in two weeks.
Sarah also brought with her the first printing of "The Quarry" and that melted my heart, seeing the book finally in a print form after all these years.
Sarah and  Clare both helped make that book come to life but Sarah has been the Production team on her own at times.
The cover is amazing too. It has a sensual tactile quality that longs to be held and the design, by Clare, is stunning.
Holding that book in my hand all evening has been an experience too but here's another thing happened next, which was Toby Hughes arrived as a visitor.
He was disarmingly lovely for an hour too.
What a caring person Toby is. I had no idea how much, but he has decided to be a carer for me, and promised to pray for me, though I may have surprised him already with my attitude, but I say, what the heck, another prayer would be lovely.
So, yeah, a nice day.
My taste buds returned too, so allowing me to eat properly again.
This has really been quite a special day, and I don't take any of it for granted, so I must say I'm a happy man, by any measure.
I was ill to start with but feel so much better now.
Thank you all who helped me today, I am so grateful you did...

With love always...


David

Day Out

After a few days of physical, mental and spiritual exhaustion, I woke today feeling slightly wonderful.
No pain, no aches, nothing. I had 8 straight hours of sleep and awoke feeling so good.
Today then, the average level has been good, so we decided to go outdoors awhile.
I can't remember the last time I left the house and not be going to a hospital, so it was quite a special moment when Chrissy drove me to the sea front with the new wheelchair.
A new role. New roles for both of us, actually, and the easiest way to adapt to being the guy in the wheelchair is to worry instead about her adapting to her new role.
So I did that, and she worried about me.
Job done. I'm just another guy.
So, Chrissy, being my very own Strong Girl Bong Sun, pushed me a halfmile up the coast, and a halfmile back, with iced cream and photos at the halftime post.
It was tiring, but I loved it all. So nice to see the seafront too. Children playing, ladies on chairs on the beach with their coffees at the ready. Couples in trainers. Children with babies to look after.
A beautiful day.

Chemo WOrld

So, I thought I'd start posting about what I'm going through.
It seems a shame not to. A missed opportunity for me, as I imagine writing about this might have a therapeutic value.

The story so far is...
I got diagnosed. Pancreatic. Survival rate in the zero range.
Too many key nerves around the pancreas to operate. Goodnight Oslo.
That's a reference to Robin Hitchcock btw. Best track on that album is "I'm Falling".
Anyway, I had my first dose of Chemo, can we call it "C1" etc from now on? (Great, thanks). And my body was affected by the many meds I was on, to get into two distinct cycles of pain.
One was caused by consti/overflow-diarrhoea, and the other was, well, lets call it tummy ache.
Somehow, breaking these down into three, treating them at separate times with their own solutions proved a tough challenge for the assembled medical agencies.
First off, I was using several agencies:
1. William Harvey Hospital, Ashford
2. Local Doc nurses
3. Chaucer Hospital Canterbury
And each of these had a slightly different approach.
This went on for 2 weeks and caused me a LOT of pain.
I was crawling on my hands and knees during the FA Cup Final, and missed the second half completely as I took a bath to ease the pain (it worked tho, so thanks Chrissy!!!)

And I had probably the worst night in hospital I ever had in the WHH.
Shall I describe that?
Okay but if you are bored by it, just skip to the next para.
So we got a call at 3pm at home
"Come to the WHH, report to A&E, we have a bed ut aside for you and symptom management people who will sort you out.
So we packed, went, and expected to check in.
But it wasn't to be how they described. Oh no.
First of all the triage lady at the front desk of WHH A&E was the RUDEST PERSON I ever saw in full time employment. Her clipped, aggressive style would be great for a high security prison, but I am amazed such a person works in a hospital.
Eventually (after 2 false starts caused by her not listening or asking questions), we end up in CDU
So, I am fed thru to the Nurse's station, where we are talking when a Crazy Lady arrives shouting and swearing at all around her.
She is clearly not totally in control of herself and mentally quite wild, but a major problem for the staff there, where she is taking up the time of 4 or 5 staff with her shouting.
She restrains herself to not touch anyone but constantly pokes her finger toward their faces.
She says she came to the Health service and they have sent her away but she is not satisfied because she doesn't like the health she has got and wants different health.
Eventually, they do persuade her away to another room. Later in the night, long past midnight, I pass an office in the corridor and she is in there, still shouting at someone.
I'm struggling as to why that is okay. Still struggling.
Anyway.
I get the nurse's attention back. They put me on a drip of paracetamol and lay me on a trolley.
Three hours later I am feeling chilled, when they come and move me off the trolley. Taking me instead to a waiting room full of patients.
The room is unventilated. There are not enough seats so Chrissy has to sit on the floor.
We remain there until 1 in the morning.
Around 1 they tell me they have a bed, and wheel me to it. Put me on the bed, then wheel the bed to a dark corridor, and leave me there.
I'm concerned about Chrissy now. Not sure what status I am either. We don't seem to have been assigned to a ward.
Eventually a tall guy comes over in a white coat and asks me my date of birth and what's wrong with me. It seems to check with what's on his chart so he starts to walk off. I stop him to ask if I am assigned to his ward. He explpains that in the corridor you are not "with" a ward.
I ask about my drugs. They have my drugs. It's ok. They will bring them when it's appropriate.
After fifteen minutes I am trying to make myself cofortable and realize my tummy ache has turned painful, so I ask Chrissy to ask the nurse for my burst medication.
She goes to ask but they decline, saying I'm not due any.
I hear her explaining this med is delivered "when needs be" but he disagrees.
You are not due any medication he repeats.
I know how the pain can escalate and am worried.
Eventually I get up and walk to the end of the corridor and we ask him together. He declines.
I am frustrated and angry.
He doesn't speak English well at all.
I don't feel he understands what I am saying.
Equally, when he talks, he just repeats the phrase he used to begin with repeatedly.
His English communication skills are very low.
After giving up, I hear him laughing and joking with another nurse.
Eventually, he realizes, after a long conversation with that other nurse, that the phrase listed next to my medication means "whenever I need it". I forget the phrase now, but think it may have been "as and when needed".
He brings my med, i take it. Then I try to sleep.
I'm woken at 5am, we have a space in the ward.
I go with them, they settle me down and Chrissy is finally able to go home.
At 6.00 They wake us up.
The room has to become a day room. The beds are broken. Please sit over here in this comfortable chair.
I move dutifully. So tired.
I've given in. No anger left, I just feel duffed up.
We sit in comfy chairs awaiting triage.
I'm worried though, as I have no advocate.
A friend told me make sure you have an advocate for when it's your turn. That person needs to be 'on their game'. So it was with some trepidation when I had to represent myself to a consultant and two junior Doctors just before lunch.
the atmosphere in CDU was incredibly stressful, both for staff and patients, and I had become infected by that stress, but also observing its effects on people in the room led me to worry that a poor decision was quite easily reached under such conditions.
Anyway, I represented myself as stoically as I could, faced with a razor sharp opponent, and one way or another the right decision was reached: to discharge me (had I ever really been admitted? It didn't feel as though I had), and refer me to the Pilgrims Hospice.
We left the hospital 24 hours after I arrived, during which time I had received one breakfast, one lunch, perhaps four hours of sleep and a high dosage of stress.
Suffice it to say, if you're thinking of checking in there soon, I would avoid the A&E and CDU areas at all costs.

In the end it was only when I submitted myself to the Pilgrims Hospice that my symptoms came under control.

Checking in on a Sunday, they had rebalanced my Meds by the end of Monday and my pain has been under control ever since.

They also listened to me in a way I had not experienced before anywhere in the Health profession. Instead of just symptom seeking, they try to undwertand the whole person, their

Identity

Like most people, I've spent some time thinking about the question of identity, and whether or not it's a credible concept, or just a palliative comfort blanket for the cold winter months.
Against it's credibility are a whole bunch of issues, including the existence of over seven billion of us, our biological and cellular composition, and the seeming lack of free will.
I first noticed the power of the first of these, the numbers objection, on my first trip to China. To live there one must be prepared to compete with 1.3 billion others, and that seems to spawn a less individualistic mentality than living, as I always have, on a small island. Many Chinese I have met lack that self-obsessed identity-building character that one meets in the west. To the extent that many Chinese people seem themselves convinced they cannot be in any way special. As a subjective generalisation, that doesn't apply in necessarily even a majority of people, but I had not met it before and it does seem a common belief among Chinese people that 'I cannot be special'.
Our biological composition also argues against the notion that we are individuals, with particular justifiable identities. We are, after all, composed of trillions of bacteria, for example. Do each of them have an identity? Also, each cell in our bodies is frequently compared to 'a city', yet although we could consider ourselves walking communities, or collections of such we seem to retain the idea that just our brains are 'us'.
If I had an arm amputated, I should not be happy if that arm pursued a career as 'me', as the brain assumes band-leadership. In plain speech - my Brain is the Jim Morrison of the band.
As for free will, that's been a concept under fire since Benjamin Libet's experiments in the 60's demonstrated that our conscious mind does not seem to be 'in charge' after all.
Nisbett & Wilson's amazing study from 1977 also suggests the conscious mind is, as Dennet says, a 'treachorous incubator of lies'. But what it does provide, also according to Dennet and others, a filter to prevent wrong actions rather than the originator of new ones.
All of that added to by the increasingly evidenced finding that we are 'copiers' who follow one another, creating memes as we go, being suggestible, falling into trances and following leaders.
So, a heady brew of objections to deal with then. One's 'identity' is starting to feel like a convenient fiction.
Yet we all know what it 'feels like' to be conscious, and to have a name and a family.
Unlike many species, we rely on one another for survival. Each bringing our own skills. The strong, the wise, the clever, the nurturing, the hunting and the child-caring. For that reason of bringing different survival strengths to the tribe, a sense of  social identity feels inevitable. 'Hunter, son of hunter' feels a necessary identity just for the purposes of tribe survival.
Then, unlike many species, we need to plan ahead. Lack of natural excellence in strength and speed force us to plan our hunting and child-minding, and a similar requirement surrounds our need for a fixed habitat. All of which again points to fixed and multiple roles for individuals in a tribe, similar to chimpanzees but with even more dependence on one another.
We also know that subjectively, despite being natural copiers, we can also be natural objectors. Objecting to an idea based on who proposed it is an almost universal trait, but objection based on general categories of thought is also normal too. Religious and secular thinkers are great examples of this.
In terms of biology too, we have some justification for our head-centricity, and, should it happen, the first successful brain transplant will only serve to reinforce this.
The seat of consciousness seems clearly to be based in the brain, even if we still have no reliable and agreed definition of the term.
In fact, defining and understanding consciousness is at the very heart of our notion of identity. It almost 'is' identity for most people, and feels like the extraordinary outcome of our biological composition that makes identity a sensible construct, and one which actually does imply free will.
For in order to simply write these notes I must have a freedom of volition. This must be an enquiry that has mattered to me significantly on a personal level to make me use my precious time summarising my thoughts here.
That we are swayed by marketing, politicians, orators of any kind and are suggestible, susceptible to manipulation and capable of being 'entranced' does not of itself deny the existence of free will so much as confirm that those states of susceptibility are the exception, not the norm, and that therefore, for the most part, most of us are in a state of freedom of volition most of the time.
So our role in a family or tribe are the basis of our identity, and our skills are a second layer, with the model completed by our free thoughts and subsequent actions.
These three layers seem to me a compelling way to consider identity. They do not disallow a change of identity for those minded to change direction either. In fact, quite the opposite, and it is that freedom, to re-learn, re-train, re-direct energies and realign one's filial and familial relationships that provide confirmation that our sense of identity is sound, biologically supported, evolutionatily necessary and socially helpful.

D Unsworth
6/4/18