Back to the world of work. My family all go out to work
and I soon follow them out the door on my way to an enabling environment
meeting in Burton on Trent. It’s nice to get on the road again and to drive to
an organisation that is starting out its enabling environment journey. The team
I met where interested and positive so it’s now a case of waiting and seeing what
strategy they adopt for their organisation. From my meeting I went to the gym
for lunch and them a session on the cross trainer. My hour brought up the
10,000 steps and saw me burn off 804 calories. So a good session. On the way
home I posted the first lot of thank you cards. The civil partnership day on
Friday is still very much with me. Once home I changed and then read for a
while. I suspect I might have napped before my partner returned home from work and
prepared dinner. I watched football this evening before starting to think about
the blog.
During the evening my partner Facebooks someone who she finds on our now deceased garners Facebook page. We get a reply very quickly. Apparently our friend and gardener died of a combination of kidney failure and sepsis having been found at home in a bad way. By the sound of it he died in the hospital within 48 hours of admission. There is to be a small and exclusively family funeral but a wake later in the local pub. All of this means that my partner and I will have the opportunity to pay our respects to someone we both held in great affection. We both miss him and find ourselves talking about him quite frequently.
Big news today prostate cancer has overtaken breast cancer as the most common cancer after breast cancer and is the third biggest cancer killer after bowel and stomach cancer. Good to know I am in the majority for once and up for a bronze medal. So there is a down side to being a white middle class older male after all.
I have done nothing today apart from weigh myself,(a disappointing 100.5 kilos), write thank you cards and prepare for a meeting tomorrow. I’ve eaten and watched football. Tomorrow is my first working day as a civil partner. I’m expecting superpowers.
My new civil partner was good to her word and prepared bacon rolls for breakfast. The family sat round and happily chatted and feasted on the rolls and the other breakfast goodies that were in front of them.
What finer sight can there be than a bacon roll when the craving is upon you.
Once we had cleared a space and made more coffee my partner and I set about opening the envelopes and parcels that we had gathered over the last few days prior to our civil partnership ceremony yesterday. People had been generous both with their presents and with their best wishes for us. We were taken aback by the affection and the generosity. There is no doubt that we will be organising something based on champagne in the future in-between afternoon teas, dinners and courses in a chocolate factory. We will also prepare food using our new kitchen boards and choosing pictures for the picture frame.
The cards and presents that people sent us for our civil partnership which touched and surprised us greatly.
The thank you cards are ordered and will be winging there way as soon as possible. We lazed, chatted and watched a bit of football (FA cup, my childhood team Brentford were playing our local Leicester team), until it was time for me to take my sister to the station. We had been concerned the evening before when we became aware that a lot of midlands trains had been cancelled due to work at Kings Cross. Fortunately it did not affect the Leicester to St Pancras service so she was able to get her planned train. She later phoned to say that she had had a smooth and rapid journey home and was comfortably nestled down at home. I returned home and took my partner to the garden centre to buy pies for tea and vegetables for the week.
I retreated to the office to watch rugby on the system and to start to write the blog for yesterday and to find some photos of the day to include. This took longer than anticipated and was punctuated by the realisation that in all the excitement I had forgotten to take my medication. Dinner and then back to the blog before I return to the family and indulge in games, chat and drinks. Funnily enough I feel no different now I am legally civil partnered than I did before except that I do not have a feeling of something that I needs t be done hang about in the back room of my mind. Apart from the tax man my affairs are in order. Perhaps now I can think about what I am going to do until the 24th of March when I see the oncologist and the fingers crossed phase comes to an end. I still have my poems to organise and my garden is beginning to nudge me by sending increasing numbers of new green shoots up. It thinks Spring is well and truly here.
Partnership day today. My partner bushwhacked me by presenting me with a small parcel which turned out to be cuff links celebrating our civil partnership day
I’m bushwhacked early with surprise cuff links.
All a bit of a blur really. From getting up to bed time it was full on in one form or another Having got to Beaumanor Hall it was a case of shepherding the guests into the bar while my partner and daughters disappeared to a room in which to change into their ceremony dresses and drink presecco. In all of this activity a good friend of my partner did practical things for us like sorting out the table seating cards and the music, which was a great help and relief. In the midst of this I was separated out and spent time with the registrar who checked who I was and could answer all the questions I answered when giving notice. She went through the process step by step which was very comforting and helpful. Guests arrived and people introduced themselves in a friendly manner while the photographer quietly went about taking in formal pictures. At noon we were requested to prepare for the ceremony. The guests gathered at the foot of the central staircase, the music started, Mozart Flute Concerto, and my partner accompanied by our daughters appeared and walked down the stairs.
Partner and Daughter descending with photographer in attendance.
I and the guests gathered in the ceremony room and my partner accompanied by our daughters entered. The registrar introduced the ceremony to the guests and then our daughters read a “letter” from my partner to me, which was followed by my pledge read by my best person. At several points people, including the readers and the registrar were tearful. I think partly because of what was read but also the fact that everyone in the room was aware of the context in which they were being read, namely that I have cancer and the health issues that my partner and I faced earlier in 2019. We found our way through the formal part of the ceremony and then we signed the documents that were required to make our civil partnership legally recognised. Finally we were announced as a couple in partnership. I think people clapped.
The signing of the legal documents
As if by magic doors to the next room opened and trays of drinks and canapés appeared. The photographer gently moved us around to take lots of photos which included an excursion into the fresh, and chilly, air for some outside shots. One shot was of my partner and I appearing to be squirrels nose to nose round a tree trunk. Finally we sat around our big dining table where the photographer took his last photos before wending his way home.
We, family and friends, which included the registrar and her husband, sat in privacy and were served a lovely meal washed down with wine and various non alcohol beverages. Within the privacy and intimacy of our space we were able to chat and joke until I spoke a few words to tell those there how much they meant to my partner and I. I also had my turn to bushwhack my partner by presenting her with a signed and sealed copy of my pledge in a silver scroll holder. I also presented her with a new version of the triple ring that we had made when she first took my name prior to us having our daughters. It will hopefully see us through the rest of our partnership journey.
People chatted to 5 o’clock and then we all said our farewells and went our separate ways.
Back home the family chilled out over a DVD and chatted till the tiredness of the day meant we all retired for a well earned rest. I cleared the kitchen of debris and had a quiet moment to myself to reflect upon the day. In the days to come the photographer will make his photographs available and we will be able to construct a pictorial story of the day. In due course those that were not there will be able to share the pictures of the day. I notice that we have not opened the cards and presents that we have recieved and know that come the morning we will sit with coffee and open them all together with the family around us. Time for for bed.
Today was the day of last minute preparation for tomorrow’s civil partnership for me and my partner. So the house is tidy, the food laid in, clothes laid out ready, the flowers delivered, shoes shined. I have collected my sister from the station and my eldest daughter has returned from work to be followed by my youngest daughter and her boyfriend. The house is full of people and talk. As the night lengthens the house retires to bed and I am left to write and post the blog. Tomorrow the family and friends come together to celebrate and at noon my partner will be protected from the vagaries of our culture’s laws, customs, prejudices and discrimination. My affairs will be in order and our relationship honoured and pledged.
Today I read that the Church of England bishops have declared that marriage between different sex people is still the only relationship in which sex should take place. They see civil partnerships of same sex and different sex couples as being relationships for abstinence from sex. Old, mostly men, who dress up, claim a special relationship with a deity telling everyone else how they should live and what is right for them. Religionists at their worst and most damaging, an outdated, irrelevant institutionalised and establishment mechanism that needs to be purged. It would seem they have an ally in cancer. Those who fall ill can only protect their families by succumbing to the power that the state and church impose. Clearly the state does not trust its citizens to make reasonable, rational and responsible relationships without it, and will penalise those who do even in death.
For those interested in the reference in yesterdays blog about a T cell that’s been found to kill cancer cells here is another article I found in a science summary piece on line.
Remarkable New T-Cell Discovery Can Kill Several
Cancer Types in The Lab
Peter Dockrill
Scanning electron micrograph of a human T cell.
The discovery of a new kind of immune
cell receptor could pave the way for a new type of T-cell cancer therapy that
can attack a diverse range of cancers in human patients without requiring
tailored treatment.
The researchers behind the discovery
emphasise that testing is still at an early stage, having been conducted only
in mice and in human cells in the lab, not yet in living patients. But the
preliminary results are promising, and suggest we could be on the verge of a
significant advancement in T-cell therapies.
To understand why, let’s backtrack a
little on what T-cells are, and what T-cell therapies do, because they’re still
very much an emerging field of treatment in oncology.
T-cells are a type of white blood cell involved in the
function of our immune system. When T-cells are activated by coming into
contact with defective or foreign cells in the body, they attack them, helping
us fight off infection and disease.
In T-cell therapy – the most common
form of which is called CAR-T (for Chimeric
Antigen Receptor T-cells), scientists hijack and augment this natural function
of T-cells to steer them towards tumour cells in particular.
In CAR-T treatments, doctors extract
T-cells from patients’ blood, genetically engineering them in the lab to make
them specifically identify and target cancer cells. The edited T-cells are then
multiplied in the lab before being administered to patients.
Some of the limitations of the CAR-T
technique are that the edited T-cells are only able to recognise a few kinds of
cancer, and the entire therapy needs to be personalised for different people
because of a T-cell receptor (TCR) called human leukocyte antigen (HLA).
HLA is what enables T-cells to detect
cancer cells, but it varies between individuals. And that’s where this new
discovery comes in.
In the new study, led by scientists
at Cardiff University in the UK, researchers used CRISPR–Cas9 screening to
discover a new kind of TCR in T-cells: a receptor molecule called MR1.
MR1 functions similarly to HLA in
terms of scanning and recognising cancer cells, but one big difference is that,
unlike HLA, it doesn’t vary in the human population – which means it could
potentially form the basis of a T-cell therapy that works for a much broader
range of people (in theory, at least).
We’re not there yet; but preliminary
experiments in the lab involving MR1 are indeed promising, although we need to
be aware that the results need to be replicated safely in clinical trials
before we can confirm this is a treatment suitable for humans.
In lab tests using human cells, the
MR1-equipped T-cells “killed the multiple cancer cell lines tested (lung,
melanoma, leukaemia, colon, breast, prostate, bone and ovarian) that did not
share a common HLA,” the authors write in their paper.
Tests upon mice with leukaemia – in
which the animals were injected with the MR1 cells – revealed evidence of
cancer regression, and led to the mice living longer than controls.
Right now, we don’t yet know how many
types of cancers a technique based on this receptor might treat. That said, the
early results certainly suggest a diverse range could be susceptible, according
to the study.
If these sorts of effects can be
replicated in humans – something the scientists hope to begin testing as early
as this year – we could be looking at a bright new future for T-cell
treatments, experts say.
“This research represents a new
way of targeting cancer cells that is really quite exciting, although much more
research is needed to understand precisely how it works,” says
research and policy director Alasdair Rankin from blood cancer charity
Bloodwise, who was not involved in the research.
To that end, the next step for the
team – in addition to organising future clinical trials – will be learning more
about the mechanisms that enable MR1 to identify cancer cells at a molecular
level.
There’s a lot more to learn here
before we can truly proclaim this is some kind of universal cancer treatment,
but there certainly look to be some exciting discoveries on the horizon.
“Cancer-targeting via
MR1-restricted T-cells is an exciting new frontier,” says senior researcher and
cancer immunotherapy specialist Andrew Sewell.
“It raises the prospect of .. a
single type of T-cell that could be capable of destroying many different types
of cancers across the population. Previously nobody believed this could be
possible.”
In the meantime before this wonder technique becomes available I shall continue to put my efforts into supporting Rocket in his efforts in my internal battle.
As for my ordinary day it started with a Sainsbury’s
delivery, and a somewhat surly delivery person. Clearly not happy about bringing
stuff in and was clearly not going to offer to unload the baskets. It could be
he was having a bad day or was a SADs sufferer, anyway he made little effort to
be cheery or communicative. So I stored the food away and discovered we have
more baked beans and tomatoes than out local cafe. An interesting indication
that the families change on eating habits are having an impact on our shopping habits.
With this task out of the way it was time to wash the bird crap off the car.
Fortunately I had bought myself a car brush set and was soon washing the car
down with something that looks like a large blue long haired dog. Whatever bird
this stuff dropped out of was well rid of it as a bout of constipation would have
killed it. It was rock hard and extremely adhesive. The result was that I spent
longer than anticipated on the job. The lesson in all this is not to park under
the trees again should I return to the same hotel, or anywhere in fact.
Having got the manual labour out of the way it was time
to finish the food shopping by going to the garden centre. I downed a tuna melt
and a coffee before loading up with cold meats and pies before returning home to
store the goodies. I spent time in the office sending meeting notes and catching
up with e-mails before heading off to Sainsbury’s to use the cash machine and
get my car waxed and polished. The cash machine went well but to my chagrin
there was no one waxing and polishing despite the fact that the service cart
was standing in the car park. I look, I searched, I waited and still no one turned
up. I gave up and went to get a paper and have a jacket potatoes and prawn
topping while I worked through the cross words. When I returned to the car there
was still no waxer or polisher. I mused and wondered if the usual contingent of
eastern Europeans who waxed and polished had just given up or had fled in the
face of Brexit abandoning their service trolleys. I doubt I will ever know and
will find them waxing and polishing to their hearts content when I next visit
the car park.
Home and some tidying up, bin repatriation and kitchen clearing before returning to the computer to start some work and making an expenses claim. In the midst of this the florist rang to speak to my partner about a flower delivery for tomorrow. This was one of those conversations that I could not join in as this is one of those surprise elements of the civil partnership ceremony that I am supposed no to know about. The florist clearly was in a difficult ethical position and managed to hedge round any detail and we inevitably agreed that I would give my partner a message to contact them in the evening or early in the morning. With the night down and the temperature dropping my partner returned home while I am writing the blog. Tomorrow beckons and the arrival of my sister means I will be doing chauffer and host duties, so tonight is time to do the last minute organising and grooming.
Today was another day that necessitated me getting up early to move my car off the drive. Fortunately there was no frost or ice this morning. As I went to get into the car I pressed what I thought was the automated opening button and nothing happened. I tried again, nothing happened. I peered in the dark to where I thought the button ought to be, nothing. My instant thought was that someone had tried unsuccessfully to break into my car in the night. Nothing I could do about it now in the dark so I opened the car from the passenger side using that button. Like yesterday I thought that as I was up so early I would go to the gym and drove there muttering about unsociable people. I pulled into the gym car park and inspected my car in the now daylight. Nothing wrong with it. This was all human, Roland human to be precise, error. I had in the dark tried to press the key hole next to the handle where the actual automatic button is located. A sigh of relief and then the realisation of the embarrassment I would experience when my partner asked how the car was. Later in the day I did indeed experience the anticipated embarrassment.
So into the gym and a reviving cup of coffee and a chance to do the cross words in the gyms paper. Success at both of them. One story that caught my eye was the claim that they have found a cell that attacks cancer cells whilst leaving healthy cells alone across a whole range of cancers, including prostate cancer. Trials on humans are due to start in November this year.
Lets hear it for a clever T cell!
I headed upstairs to the gym floor and decide that this was the day to get back on the rowing machine. This was not my wisest idea but I managed to grind out fifteen minutes and 154 calories. It did not take long for me to realise that rowing was more demanding than I remembered and I was very quickly feeling the pain in my arms and back. I got off and wanderer over to a treadmill where I proceeded to walk for an hour on a random slope programme. By the end of the end of the hour I had burnt off a total of 628 calories. I still had to walk the gym floor for the last of my 10,000 steps. As soon as my Fitbit vibrated to tell me I had my 10,000 I was off to the showers and the warmth of the refreshing water. I was soon fragrant and sitting in the lounge with more coffee and a bowl of Thai chicken soup.
Home and into the domestic chores before settling done to watch more world championship mixed bowls whist I mended the gas fires firing mechanism. A relatively simple job made tricky by the thinness of the wires and the awkwardness of the position. Ultimately it fired up and we are now safe from a total breakdown of our boiler. For a relatively simple wiring job I seem to have utilised a large number of tools that needed to be returned to the garage. After that it was a list of chores like putting the bins out, tumble drying clothes and tidying up. As a precaution I burnt CDs of the civil partnership music just to ensure that I had a backup to the USB stick that I have prepared. If all else fails I will take the original CDs.
My eldest returned home from work where she had been minding the school psychopath and presented me with two Cadbury’s crème eggs. Oh temptation. I resisted bravely and refused them, as apart from a single mint crisp and an imperial mint I have managed to avoid any sweets for the last 15 days. Once dinner is done and the blog written I shall tonight watch football, read and prepare for tomorrows chores of pre civil partnership last minute organisation and crises.
Monday, and my car is last on the drive, that’s an early
start for me then. I moved around in that semi conscious staggering state and trusted
to luck that my clothes were on the right way round and complete. Today has the
added fun of defrosting the cars. So there I am with two cars with their engines
running while I scrape ice of the windscreens. I dump my portable office back
pack and my gym kit in the boot and reverse out into the early morning traffic.
I figure that if I missed the gym yesterday I might as well get myself to the
gym early and burn off some flab.
The gym was surprisingly full; there is clearly an early
morning club that gets in early for a pre work work out. I down a large black
coffee and get up onto the gym floor and clamber up onto a cross trainer. I
grit my teeth and set the resistance at 15, my pre chemo resistance level and
start out with my i-pod blaring random music in my ears. Fifteen minutes in I
realise I have not got a bottle of water; I grit my teeth harder and press on.
By the end of the hour I’ve done 804 calories. I am back on track; the next
step is to add in 15 minutes on the rower. This will get me over the thousand
calorie mark. That will begin to shift the weight. I have to be patient and to
work to get myself to my old standard, then I will see some more pronounce
effects. I clamber off my machine and check my steps count. Not enough; so I
walk the gym floor until my Fitbit vibrates and tells me I’ve reached 10,000
steps. It’s time to head for the showers and that good warm clean feeling
before the luxury of hot chocolate and tomato
soup. I sit in the lounge and recover whilst making calls and checking my
e-mails. The lounge fills with ladies who coffee and lunch, its time for me to
move on.
I drive to my local B&Q where I search in vain for a
connector crimping tool and crimpable connectors. Nothing to be found, the odd
pair of crimpers, but no connectors. I go back to the car and order a set from Amazon
that will be with me tomorrow. Who needs shops, especially when they do not
stock in their shops what their website says they do.
I drive home and settle into opening the post. My new
debit card has arrived and I foolishly decide to activate it via online
banking. What a performance just getting into my account, but eventually I
realised that my answer the question “what is the meddle name of your eldest
child” was one where I had been creative and bears no resemblance to my eldest child’s
middle name. Now that’s what I call security. All I have to do is use it with
my PIN and I will be able to wave it around to spend money, or at least £30 of
luxury and frivolity. I take a break and eat dead flesh of a pig and a coke before
refilling the bird feeders. In doing so I find that an enterprising
mouse/rat/hedgehog or Silurian slime worm has nibbled out the corner of the
peanut bag and had themselves a banquet. Feeling virtuous I take time out watch
the couples indoor bowls final, which was an interesting show of old people watching
young people play an “old peoples” sport. The excitement was almost too much to
bear, how all those old people in the arena manage to stave off heart attacks
is a mystery. So having indulged I return to the computer to write the blog.
Tonight I shall be joining friend for dinner, which will be nice, except the drive to the venue which is close to where I once worked and oversaw a large prison therapeutic community. As the days pass I realise that there are just three more days before the Civil Partnership ceremony. Plan for the worst and hope for the best springs to mind.
The Civil Partnership organisation is everything at the
moment. At last we have sorted out the seating plan for the meal. We have also
decided on the music for the various bits of the ceremony. We are going to eat
to Argentine tango music, which could be interesting. As we are having guests over the next weekend
there has been concerted cleaning, tidying and organising going on. So today we
have been readying ourselves for the week to come. It’s now that the fine
details come into play and create the last minute anxieties, but we are almost
there as things come together.
One thing that is not coming together is my weight. I am into the 12th day of a changed diet and thought I might show a weight loss this week but it was not to be. Sunday being my weigh in day I skipped into the bathroom early in the morning and set the scales down on the designated floor tile. I tapped the scales to wake them up and when they showed there zero face I stepped onto them, naked and expectant. 100 Kilos!!!!! I am surprised and deflated. I step off the scales and repeat the process. 100.1 Kilos!!! I try moving the scales to another floor tile and hop on. 100.1 Kilos!!! There is no denying it, I’ve put on weight. All that carbohydrate denial and sweet deprivation and the opposite of the expected has happened. Now I have a dilemma, do I pursue more of the same or change what I am doing. My immediate response is that I am not doing enough exercise. I need to burn off more calories, so my Monday is determined it’s the gym for me. I’ve not made the gym today with all the CP organisation going on.
So an evening of TV, reading and then an early night as I need to be up and away to the gym as soon as possible. This is a lesson in patience, as things are definitely not happening in the order that is in my mind.
Someone left a comment on a previous blog saying that my posts were getting boring. Possibly true as the “ordinariness”of prostate cancer grinds its way through my body. The “exciting”and easy to write about moments have come and gone and I slide into the everyday living with cancer phase. It is the same hinterland but with fewer landmarks. I guess this is inevitable, so I shall pay a bit more attention as I move towards my civil partnership and my March oncology appointment with its attendant scans and blood tests, however the experience of this kind of cancer is boring because of this stages quiet and insidious nature.
*MY SOUL HAS A HAT* I counted my years and realized that I have less time to live by, than I have lived so far.
I feel like a child who won a pack of candies: at first he ate them with pleasure, but when he realized that there was little left, he began to taste them intensely.
I have no time for endless meetings where the statutes, rules, procedures & internal regulations are discussed, knowing that nothing will be done. I no longer have the patience To stand absurd people who,despite their chronological age, have not grown up.
My time is too short: I want the essence, my spirit is in a hurry. I do not have much candy in the package anymore. I want to live next to humans, very realistic people who know how to laugh at their mistakes, who are not inflated by their own triumphs and who take responsibility for their actions. In this way, human dignity is defended and we live in truth and honesty. It is the essentials that make life useful. I want to surround myself with people who know how to touch the hearts of those whom hard strokes of life have learned to grow, with sweet touches of the soul.
Yes, I’m in a hurry. I’m in a hurry to live with the intensity that only maturity can give. I do not intend to waste any of the remaining desserts. I am sure they will be exquisite, much more than those eaten so far. My goal is to reach the end satisfied and at peace with my loved ones and my conscience.
We have two lives and the second begins when you realize you only have one.
er after breast cancer and is the third biggest cancer killer after bowel and stomach cancer. Good to know I am in the majority for once and up for a bronze medal. So there is a down side to being a white middle class older male after all. 
