Hutong

Tonight Raoul took me to Hutong in the Shard. What an amazing view. London is such a cool city to be in. Too bad it is all to be thrown away when we Brexit. We accidentally ordered soft shelled crab, reminding us of the time in Florida when I previously ordered it. So creepy, just like a plate of spiders. This time they were deep fried though, so not quite so off-putting.


I've been living in SE1 now for about 4 years. It would be good to move although now is not a good time with the property market tinkering on the edge of a crash. Best to wait until that happens and then jump in. Like on 29th March 2019, 11pm when we apparently leave the EU. Without a deal, the way it is going, a suicidal mission if ever there was one.


Kidney wise I'm not sure which will come first- my transplant or Brexit. Both are in dire straights. I've been losing a bit of blood in the past month. I think dialysis is quite close now. Funny how people react to that. For me it feels normal, but its hard for others to take in.


Theresa May lost two Cabinet members in the past week. The government is crumbling, yet she is hell bent on taking us off the edge of the cliff. There are still the important issues of (1) Ireland border (2) citizen rights and (3) the financial divorce bill that need settling in the next two weeks. I think beyond that then things are really going to start to melt down. Badly.


Well it's not like we didn't warn them. People like my mother seem to think naively that it will all be okay. Well it won't be. This is a complete disaster for the country and I want no part in it. If it weren't for being on the kidney transplant list we would have left this festering island a long time ago. Still, at least London is a moderately outward looking outcrop in a sea of nationalistic intolerance.
God get me out of this time in history. I am so ashamed to be British right now.

Painful left side

Back on Brexit Island now and the memory of our wonderful holiday is with me. The good news is that my legs and feet are no longer swollen. After returning I saw my consultant who told me to reduce my dosage of Amlopidine. Turns out the 20mg I was taking per day is too much - despite a locum consultant advising me to do so.


My body shape seems to be changing a lot. My stomach is still extended, my left kidney is huge and has recently become a little painful. I'm finding it difficult to sleep at night when I lie on it. Add to that another ear infection which is sending shooting pains across my skull. At least my snoring seems to have subsided. Seems the Amlopidine might have caused an edema in my throat.


I didn't go into work today. I'm tired and uncomfortable. I'm also in need of another trip. Luckily I fly over to Bergerac in a couple of weeks for an extended weekend with Sam. Should be fun!


I'm not really eating well right now, just not eating much at all. It all feels quite bloated. My left side hurts when I press it. It feels like end game for my renal function now. Last test I was on 12 eGFR. It's been around 14 for most of the year, so it is clear that the decline continues.

To Cannes

We returned from Aix and headed for a sleepy place called la Seyne Sur Mer. The hotel was quite chaotic, although a Hilton. Unfortunately the Mistral was blowing with a vengeance which made any hope of a dip in the sea too remote.

Now we are on the TGV heading for Cannes.

Marseille to Aix

Following on from Mycaene we found a lovely spot near to Corinth for a drink. So relaxing to sit under the shade with the waves lapping against the shore, watching the boats pass by.

Then another night in Athens before flying out to Marseille yesterday. It's quite nice to be in France again not least for the improvement in food offerings. Last night we ate by the old port and for 17 Euros I enjoyed a delicious bouillabaisse with the de rigueur bitthe of rosé de Provence.

Marseille is a beautiful city, a bit edgier than Nice but with the same fantastic architecture.

Today we are en route to Aix en Provence.

Arkadia

Spending the most awesome week in Greece, visiting ancient ruins of Messini, Epidurous and this morning the stunning 3rd century BC theatre of Orchomenos.

Arkadia is truly stunning. Last night we stayed at Levidi at Villa Veger. The air is cooler here but still hot. My ankles are not performing well in Greece I have to say.

From Arkadia we are driving towards Mycaene and the ancient tomb of Agamemnon.

Greece will always have a special place in my heart.

Suffering in the heat

It's been a tough few days. I've been suffering in the heat. My ankles have swollen up, I've become breathless, woozy, my stomach is bloated. I suffered in the cold last winter and now I find that I suffer in air conditioning, becoming jittery and anxious. It's not a nice feeling.


On Friday we travel to Athens to see Alex K and Alex G. Four days in Athens; the remainder of the trip is undecided. Raoul has been too tired to focus on anything else. He is also suffering badly from his tiredness right now.


I really hope that the holiday lifts our spirits. I'm slightly nervous for the heat, but it will be great to embrace Europe. Visiting Trump's America is not very appealing right now.


Here the weather has tempered slightly, although my flat is still showing as 27 C. Ate chicken soup tonight, partially as comfort food, partially after my filling. Whilst I struggled slightly to walk to Kennington Road for my dental appointment, the evening stroll did me good I think.


I still need to decide on career. The Optimisation role is no longer in my minds eye and I am drifting more to be the enterprise architect. I don't really have the energy to be career minded right now.


Looking forward to spending a few days near Bergerac with Sam. Turns out we can stay at her father's house there after all.


Boris is being an idiot again, humiliating the country. The EU might be told they can whistle for their money but Michel Bernier is right to say there is no whistling, only the clock ticking until March 2018. What a complete and utter mess.

Brexit means something

It's unbearably hot tonight in my flat. I should have invested in those blinds I looked st earlier in the year. Too bad. The fan is on, the doors and windows are open. My ankles have started swelling badly today. I'm drinking lots of fluids and trying to remain cool.

And tomorrow is the Queen's Speech, yet the government doesn't have an agreement with the DUP yet to maintain an overall majority. Chaos reigns both here and over in Brussels where Brexit negotiations have begun. Overwhelming evidence states that we should remain or have a soft Brexit yet, unbelievably, despite her reduced party presence in the Commons, May is pressing on with hard Brexit. Will someone, Ken Clarke, anyone, please stop her before it's too late?

Thoughts on hung

Well that's a turn up for the books. This was kind of what I was hoping for, except not with the DUP. Whilst it's great that there is some challenge to the hard brexit road we were likely to be going down, I am concerned by the right wing policies around equal marriage, abortion and climate change that the DUP hold. I've written to Neil Coyle, who was successfully elected back into my constituency last night.


I think this is Schadenfreude, given the mantra of "strong and stable" that was forced down our throats. Yet, unbelievably, as I listened to Mrs May speak outside Downing Street, she spoke as if she had a Conservative majority. She is still talking about the will of the people, completely ignoring the will of the people from last night. I expect she still has her feet being held to the fire by the likes of John Redwood and Rees-Mogg. Well the vital thing is that she avoids a vote of no confidence, as Labour and the Lib Dems will surely attempt quite soon, to challenge her authority. Interesting times. I just pray that this means an end, at least, to the hard Brexit nonsense.

Elections, terrorists, kidneys

I don't really want to forget this last week. The last week before the General Election on Thursday. Who'd have thought six weeks ago that the situation would be like it is now?

Then, Theresa May was leading massively in the poles. Then, Jeremy Corbyn was viewed as a bit of a joke, a crusty old Communist who had no chance of beating May. Back then I joined the Liberal Democrats, convinced that their offer to give the public a second vote on Brexit would be the sweet deal that put a stop to all this madness.

Six weeks on: the Liberal Democrat dream is in tatters and the race is neck and neck between Corbyn and May, depending on which pole we believe. The country is split, not so much between Remainers and Leavers but the young versus the old; those with property and pensions and those with no property and who are saddled with student debt. And more recently, since the atrocious attacks in Manchester and London Bridge the battle is on safety; the Tories whose period in Government over the past seven years has failed to stop the wave of terrorists versus Corbyn's IRA past and the relationship he really did have with those protagonists of The Troubles.

May has stuck to robotic slogans: "best possible deal for Brexit", "strong and stable government","me or a coalition of chaos". Yet with multiple u-turns on policy, such as with the hated Dementia Tax, has started to appear weak and wobbly. Corbyn, however,  has evolved from a simple communist to a confident leader in the making, focusing not on Brexit but on NHS, policing and minimum salary; yet one who will tax the top five percent, who refuses to keep us in the Single Market and is rumoured to be planning a mansion tax. It is to the young that Corbyn appeals generally and it is to the older population where May shines. The question on Thursday will be whether enough young people turn out to vote for him.

I'm not in keen for either Labour or Conservatives to win an overall majority. Neither are guaranteeing to keep us in the Single Market.  Neither see the beauty and necessity of freedom of movement. Only the Liberal Democrats, together with SNP can temper the nationalistic mood that has gripped the country since last year.

There are signs of hope. Macron won the French presidency. Netherlands remains Liberal. Europe is strong. We need Europe. In this world of ISIS terrorists we need to work together. I pray that on Friday there is no overall majority, that in the following days there is the "coalition of Chaos" depicted by May. It is what this country needs to heal, not a UKIP style Conservative Government and not a hard left Labour Government that strips hard working successful people of their wealth just for the sake of it.

I think about those who died in Manchester and London Bridge because of hate. I want to end the hate more than anything. When I think about it happening on my doorstep, along Stoney Street in Borough Market it fills me with sadness, but also resolution not to give in to hate, whether that be ISIS or Katie Hopkins' Twitter feed, which I blocked this week.

And as a background to all this I entered the kidney transplant list. It's a sobering thought that someone has to die to give me their kidney, unless I find a living donor of course. It's odd that I felt quite relaxed, almost relieved about it whereas others seemed somewhat upset. So long as I keep my old bloated ones going for as long as possible, although my ankles are now swelling and I'm still a little breathless. I ignore it, or intend to. Life is too precious to worry, especially when it can be extinguished in a second by being in the wrong place at the wrong time. I'm more concerned by who my next prime minister might be, and how we can stop this fuckfest that is called Brexit.

A fork in the road

Another day another hospital appointment. I've now declared my medical situation officially to my workplace. I thought it the best thing to do. Being imminent on the kidney transplant list is something that I need to adapt to, at the very least curtail my business travel. When it comes to leisure travel it feels more of a personal choice. This weekend I flew down to Nice for an overnight stay. Again the beauty of the Cote d'Azur drew me in and I became more determined that ever to end up there. Raoul seems quite keen on the idea too. For me the kidneys are my blocker - particularly if we leave the EU and I don't even have the benefit of my E111 card. Life sucks.


But then life opens up opportunities. I am pushing for career progression right now, at least whilst I have the energy and enthusiasm. There's a bit of a fork in the road for me right now in terms of career choice. Do I remain technical, or become more business-focused?


For now I attend my monthly medical reviews and take life as it comes. I hope and dream that one day will have the opportunity to live in France. For now I can still enjoy brief forays into the sunshine. Also I have a trip to Greece this summer to look forward to, where I'll be seeing my old university friends.

My voting intention

Today's announcement by Theresa May of her intention to hold a General Election came as no surprise. She has the mandate, if polls are to be believed. And a greater majority will allow her to wriggle out of the hard Brexit position she has placed herself into.

I'm in two minds about this. Gain more seats and Brexit will go soft. That is what the markets believe judging by the rising pound today. Lose seats to an ascending LibDem party and we remain in the Single Market. Either way I'll be happier. Labour will surely not gain much with Corbyn in charge. Ultimately the future is unpredictable and if I were a betting man I'd place David Miliband as PM by 2025.

As a sign of my voting intention I today joined the Liberal Democrats. My Labour MP is very pro-European but I cannot forgive Labour leadership for waving through Article 50 like they did.

For me, Brexit is the single issue of this election. If will vote for which ever party shouts loudest about stopping this nonesense. At the moment that is the LibDems.

Today is Black Wednesday

Well today is the day, when we make a leap into the unknown. It is a day I never wanted to happen, but that dreaded letter is making its way to Donald Tusk in Brussels, triggering Article 50 and our departure from the EU.

Let this be clear: the right wing bigots in the Conservative Party are in control here. There is no coming together. I for one remain adamantly opposed to what this Government is about to do to this great country. I am not unpatriotic. I am not against the will of the people. I am democratically expressing my extreme displeasure at the direction Theresa May is taking us. This is a great country. There is no plan. My only hope is that this will conclude with us remaining in the Single Market and enjoying the freedoms that come with that.

This morning on Radio4 somebody said "it's about taking back control of our borders". I will never stop believing that this movement to Brexit has been about for the vastly main part about xenophobia. Nothing more nothing less. That we would walk away from the Single Market to feed this bigoted view is madness. Immigration is good. It feeds our cultures, it brings down barriers, it feeds into the economy, it funds our pensions. If schools and hospitals are full then this is about Government policy and lack in investment, not about immigrants.

This is Black Wednesday. I've cried already this morning. My resolve will never falter in opposing this lunacy.

 

Anywheres and Somewheres

I'm working from home today as I await my passport delivery. Quite the irony given that once I am on the transplant list I shouldn't really travel away from home too far. Still it doesn't feel right not to have the means the travel. I've been listening to Andrew Marr on Radio 4 this morning, with a discussion on Anywheres and Somewheres. I am most definitely an Anywhere, probably to the extreme, in that I am an ultra liberal who believes that immigration is a good thing for culture, economy and social progression.


Still, I stand increasingly isolated in the Theresa May view of the world; she who despises citizens of nowhere. I've lived in London for about twenty years now. I thrive on the multiculturalism here. It's what makes the city work. Believe it or not there is a small community here, be it friends from my building, friendly faces from Guys Hospital or others in local politics. The latter I am increasingly interested in becoming more involved in. I want to make a difference in my local community. Is it possible to be both an Anywhere and a Somewhere?

Not a good kidney week

This week was not a good kidney week. After seeing my consultant and the surgeon, we calculated a rate of 24 months before I might require dialysis. I think the NHS are manipulating me into finding a living donor, as by me going on the transplant list I will also need to wait a minimum of 24 months to find a deceased donor. Go do the sums. I understand why they are doing this, why they didn't put me on the transplant list last year where I would in most probability have avoided dialysis. It just isn't fair. Well life is not fair. Suck it up.


Then later in the week I received a call from Guys to tell me that my eGFR had declined from 15 to 13. This is important as it puts me much nearer to the 10 mark, when I might need to go on dialysis. In theory it could  get to 8 but I am not taking any chances. So now I have to come in for an additional appointment to go through the motions for that.


So now I am really looking at living donors. It's what the NHS wants and it is what I want. It just freaks me out to have to discuss this with friends and family.  If I find one, this nightmare could all be over in a month or so.


Yesterday I started feeling quite dizzy and came home early from work. I think it might be the increased medication to try to reduce my blood pressure. That really rounded off the week for me.

Storm Doris

Doris Kenyon, 2010

Today’s storm brought obvious memories back to me of my late grandma – Doris. It felt good, if a little irrational, to idly muse that she was blowing the air about me. It made me think about my own mortality and who might even bother to look me up or muse about me in a hundred years. I thought of my grandma’s parents – long dead but well documented in my Ancestry family tree.

 

Doris Kenyon, circa 1932

I suppose unless you breakthrough into celebrity status there is nothing other than official documents or perhaps social media that will persist. It would be fascinating to go through the tweets or Facebook posts of future ancestors, although the mountain of data will be considerable. So how do you ensure that the important bits are captured? I suppose in me writing this blog I am attempting that in some way, but will it persist, and if it does will it be buried beneath all my employment and tax records?

 

I’d like to hope that there is something personal about me that is left behind. Something for future generations to grasp as to my character. When I was researching my family tree a couple of years ago I was delighted to discover that an ancestor on my paternal grandmother’s side had been arrested for stealing some corn. When all you have is Census, birth, marriage and death records being able to fill in the gaps with some extra colour makes it all worthwhile.

 

Not that I have been arrested – yet at least, although I did have a storm bearing my name earlier this year!

Ethiopian memories

I was feeling a little down after last week's hospital visit, so I thought I'd focus on something more positive. There is so much wrong in the world right now, so much incomprehension that I need to hold onto something that makes me feel good. So I thought about listing out all the things that I have done in my life so far that I am proud of. Here's one from the list. I might add to it over time.


Trip to Ethiopia, 1994
Following my graduation I was a little lost in direction. My partner at the time contacted the Missionaries of Charity in London to ask about voluntary work. At the time a lot of young people were heading over to Calcutta, with Mother Theresa still actively working there. However the Sisters suggested Ethiopia as an option, which received little attention. So off to Addis Ababa we went!


In the time I worked there I experienced so much. From helping wash laundry, to feeding the patients, to cleaning, to washing. The children were wonderful. It was a real community and I am very proud to have worked there. These people had nothing yet the Sisters ensured that they kept their dignity.


We worked in the Addis Ababa compound first, right in the midst of the city. Outside the compound life was so very basic. Kids on street corners begging, simple stacks of tomatoes for sale on the filthy ground upon shreds of cloth.

And the rain, which came at 2pm every day, lasting until 4. But Addis is such a sprawling city, whether it be lunch at the Blue Tops restaurant (a haven of Western food for when we were fed up of eating injera) near to where the fabled Lucy's remains were kept, or else the enormous Mercato market city, which went on for miles and miles.


Then, following an overnight train journey to the east of the City, we arrived in Dire Dawa - an Orientalist's dream: sandy, roaming camels, abundance of khat. There the compound was much larger. One morning we were awoken by lots of people outside our room, which was a small brick-built hut, equipped with a simple fan (assuming electricity) to keep the mosquitoes at bay. Sleepily I opened the front door to be startled by a mass of hundreds of people, all queuing for cooking oil, right outside our hut! The Sisters were giving it away in gallons - the only caveat being that recepticles must be provided. Most were holding rusty tin cans with them and were able to scoop out a litre or two from the enormous vats. We started helping, and with the sun beating down it wasn't long before my arm was soaked in oil and burning quite nicely. One or two only possessed plastic bags and had to be turned away. The event took all day. I was covered in oil from head to toe by the end of it.


Another time in the compound, the Sisters decided that they wanted to go to market for the purchase of a cow. We accompanied them in one of the ubiquitous blue mini buses into the local countryside where they were set to barter for the said purchase. We were told to be discreet so as not to permit the inflation of the price. However unbeknown to me, a crowd had started gathering and an agitated man carrying a very large machete approached us aggressively. There then followed an argument in Amharic whereby one of the Sisters - Sister Michael - shouted at him and he, thankfully, skulked off, thankfully leaving us intact. We bought the cow, naming him Geoffrey and took him back down the hill and into the compound. Over the next few days we visited Geoffrey until the time of his slaughter, at dawn. There followed a feast, with all the children singing and dancing as the meat was roasted and we partook of the flesh, which I have to say was tough and flavourless.


I take my hat off to the Sisters in both compounds for their dedication and hard work in looking after the ill and the orphans. It's over twenty years now since they were there but I still have great memories of those wonderful ladies, in particular Sister Michael, who took us under her wing. I'm proud of them all for what they did for the local community and feel inspired that I can perhaps be a better person for my experiences there.

Hospital appointment!

Today I had an appointment at Guys Hospital to scan my kidneys. I've not seen such close up images like that before and it's fair to say that I was pretty shocked by how advanced the disease is, with the largest cyst or crater being 5cm long. Thankfully there was no carcinoma detected.


I guess it puts it all into context for me and aligns me to the thinking that dialysis is not far away. My appointment next month will most likely lead to me being placed on the transplant list.


I've been feeling pretty tired of late. Getting up for work is difficult. But the world carries on, fake news continues, assassins wear tops emblazoned with "LOL".

Bank of geeks

I was googling some of my old school colleagues the other day. I was at work, a little bored I suppose as I revisited my A Level years in Harrogate. I remember those years as rather lacking direction. I was in the top set at English, but competing against a bank of geeks to the desks on my right who all looked down on me.

I was in love with one, Thomas. He was slightly more introverted than the rest; somewhat posh, goth with beautiful, thick nut-brown hair. We sometimes walked home over the Stray together after school. He was also rumoured to be out.

Hockney's swimming pool,
Roosevelt Hotel, Hollywood

Part of the problem, as I see it now, looking back on my isolation as a more confident fortysomething, was a lack of many role models in my life. There was David Hockney, I suppose, who I discovered one day in a spread in the Sunday Times magazine, discussing his forthcoming Retrospective at the Tate (and whose current exhibition at the Tate I am very keen to view). I actually bunked off from Lower Sixth for a day to see that exhibition in London. And it blew my mind away. His use of perspective and colour is incredible. Just look at that photo I have taken of the swimming pool he painted at the Roosevelt Hotel on Hollywood Boulevard.

I was probably obsessed by Thomas. He was very bright and went up to Oxford. I wrote him a letter from my digs in Reading later that year in 1989, declaring all. He never replied. I have googled him too recently and I have an idea of what he is doing. And he is doing rather well.

That bank of geeks tormented me. And in the normal rules of the universe, fate would have caught up with them. Yet I see that one is on the Legal 500 list, another is a professor in California; another is a City success case with a huge house in Fulham. It's hard not to compare and contrast.

Back in 1987 I so wanted to return to that school for my A Levels. My earlier years had been disrupted by my parent's divorce and my mother's remarriage to the aforementioned stepfather, who took me out of Harrogate and moved us to the other side of Leeds, much rougher and far less refined. Two years of hell followed, where I was considered the "posh kid" and ostracised whilst I channelled my loneliness into my O Level studies. With glowing grades I was able to return to Harrogate, and into the top sets, when we all moved back to that area in the summer of 1987.

Yet after two years of longing to return I was bitterly disappointed to learn that the world had shifted somewhat. My younger school friends had moreorless vanished and a new, more Sloaney set taken their place for A Levels. Again I was the loner, mocked for being "not posh enough" and feeling culturally inferior when incidents such as a mispronunciation of "Achilles heel" in English class left me the butt of jokes and torment.

I was never going to be a high flyer. I was told that at Harrogate several times. Thomas told it me, as we walked across the Stray after school one day when I disclosed to him my interest in attending the Oxbridge introductory sessions. "You're not good enough for that," he said.

On the one hand I look back at that bank of geeks with awe. They mocked me, humiliated me, tormented me and I took it with homoerotic enthusiasm. It made me introverted. It took me on my journey with David Hockney, my love of his double portraits, the theatre of his art, embossed with colour and tone. I was never going to be much of a success, partially because they forced me into a mould of self-imposed isolation and partly because of my lack of role models. My father was absent. My stepfather unapproachable. My elder brother also quiet and self absorbed. 

What a lament I have going on here! On the other hand I look at those geeks with disdain. They were part of the clique I envied but also shunned as I tried to make sense of my own life. They were better than me academically but they were no Ed Sheeran. I was reading his article in this month's GQ. What a guy. Pure drive, talent and focus. I had none of that. I wonder how many fortysomethings took a career they were only mildly interested in and have done okay in, but who have never really been high flyers. They just turn up every day to work and keep going, without ever finding their niche.

That bank of geeks is now an irrelevance to me. I'm much happier in my skin than I used to be. I haven't yet found my niche and I'm not channeling my energy like Ed or David Hockney, but I'm sliding along, content with life. 

The family know

So now my family know I'm due to be on the transplant list. Text messages from my mother, brother and sister in law. It's an odd feeling but I really don't want the fuss and attention. I think they think the operation is imminent. More likely I'll be on dialysis before that.

It's nice to have escaped to the country for the weekend. We normally do this as the boyfriend owns a cottage in Sussex. Sometimes it's great just to get away from all life's problems and cocoon oneself in front of a log burner, sipping steaming hot tea.

Notes on the demise of M.T.G.

We discovered on 18th January, via his daughter – one of the few remaining offspring still in contact with him – that he had died, nine days earlier on 6th January. That is nine days before she told anyone.


I always stated my intention to open up a good bottle of champagne the moment I heard the news of “M”’s death. “M” because I could no longer bring myself to mention him by his name. Then again my opinion was that this type of character would last forever – the bitterness within seething away for years to come. In the end it was cancer of the lung. A prolific smoker, having destroyed all his relationships, he concluded by destroying himself.


In typical fashion the last few months were chronicled by him via social media – photographic uploads of deathly selfies and still-lifes of medication piled upon trays next to his single bed in his solitary premises. Typical because it was still all about him. Besides the posts about God being his saviour and his aches, pains and chills through the winter, there was little remorse and certainly no sorrow for what he did to us. His followers appeared kind to him. It is not clear whether he had met any of them in person or not. They offered him sympathy, wishing him well for the Christmas period. That was his last post, dated 13th December.


I do feel sorry for the man, sorry that an intelligent and, frankly, interesting person could descend to such levels of despair. All those years when he dominated us, and yet now he was to end his final days in a tiny flat on a Leeds council estate, or in fact perhaps in hospital with no visitors. I wonder if he realised that as he breathed his last. Was he still so consumed with himself that he did not finally notice that no-one actually cared?


The other strange thought I am struggling with is that on 3rd January, three days before his death, I returned to his website, with morbid fascination during a lull in my working day, to spy on his profile. I presumed he had probably moved to France. He always dreamed of this and it was only his marriage to my mother at the time that prevented it. Again, there was something I had in common with the man, being a love of Europe and otherness, whereas my mother was transfixed by a Brexit obsession that I had recently come to despise. However, what I saw were the gruesome details of his above mentioned affliction, his pallid face staring ahead, other-worldly, thin and broken. His profile was set to public mode for all to see. My paranoia kicked in as I moused-over the details, terrified that I might inadvertently like a selfie or a post of religious supplication.


The problem I faced was whether the information I had acquired should be shared with the rest of the family before it was too late. They had all stopped contact with him following on from the divorce proceedings of 2010 to 2013. Yet did they have a right to know what I knew? I mulled over this knowledge for a further two weeks, not knowing that his life had already expired. In the end it was a text message from my mother that advised me that he was no more.


Actually he still is, in that his mortal remains are still with us. His “devoted” daughter, the one who secretly knew of his illness, the “trained psychiatrist” who was the only one to understand him (even though she left school with barely any A Levels and had been living the alternative life for years in a sub-prime existence in Bristol), according to a text from my mother, has passed on all responsibility to her sibling. The message I hear is that he will be cremated “eventually” – in other words at their convenience. I am currently pouring over these details like a soap opera, enjoying the pathos of this demised tyrant.


One of the possible advantages of these goings on, is that I’ve exchanged a number of text messages with my estranged mother. Estranged over Europe and the goings on around the 23rd June referendum. My family takes opinions to the extreme and we haven’t spoken in over a year. Neither have I with my half-brother, son of the aforementioned parents, who hadn’t spoken with his father since the Non-Molestation Order of 2010 where we first formally cut him out of our lives. He has been working for a high profile politician for a couple of years and we have fallen out over my insistence to correct his political views posted onto my timeline. The bitterness ensued by the demised-one had settled into other family relationships and was proving hard to shift.


I will be opening the champagne – at my convenience this weekend. I’m not going to let him have one last victory of giving me a hangover on a work day. The celebration is that the chapter can be closed finally, although I have a feeling that he has left behind some delights, whether in his will or in other documentation that might be found in his flat, whenever anybody bothers to look.

Consideration of social media

I've been thinking, is blogging still a valid pursuit or has it been taken over by the YouTube generation?


I could follow into that except I'm not a "twentysomething twink" wishing to perform public pranks or challenges. My approach is more mature than that and perhaps not suited to video performance. I'm also not really sure who my YouTube audience would be. Do older (as in fortysomethings) gravitate to YouTube as their preferred social media channel?


I dread to consider that most use Facebook. I have a pet hate with Facebook currently. During the Brexit Referendum I posted A LOT of political articles and comments and had extremely little response. Photos of kids' first day back at school or stupid cats always get the likes, whereas anything political seems just a bit too awkward to comment on. I also noticed that my mother (remember I had the Brexit argument with her) had taken to only liking non-political posts. By June 23rd she wasn't liking anything I posted as it was entirely political.


I suppose I went a bit overboard on Facebook with Brexit. On the one hand these people need to understand but on the other they just don't care. I shunned it for a while, after setting my profile to black on June 24th.


On the other hand Twitter has been quite good at putting forward those pithy remarks. I have over 2000 followers currently, although a lot of them are undoubtedly the #TeamGay brigade. Still it is refreshing to have people respond to my inane comments, political or not. Sometimes I do get trolled, either by a Brexiteer or a Alt-Rightist. I give as good as I get. I also take great pride in having been blocked by Andrea Leadsom.


I think the reason I have never embraced YouTube is due to a sense of privacy. You give everything with YouTube, including all those unscripted pauses that are like windows to the soul. I think you need to be a good performer to do that. I'm quite an awkward person. I don't like awkward pauses. I'm also terrible at live humour. Not that my writing is much better but at least I can be more considered in a blog.


And blogging is what it shall be.

First post. Setting the scene.

My name is Matthew and I have polycystic kidney disease. It doesn't define me though. Being gay doesn't define me either. Nothing defines me in fact. I'm undefinable. I wish I could be defined.

I'm writing this blog with a view to that: defining myself. Perhaps in a series of posts I can achieve what others can achieve in a single line or phrase. There are a few things going on in my life right now that it would make sense to put down into a blog.

So first let's start with the kidneys. Bloody things. It's a slow decline but it's going to happen. In six to twelve months, they say, I'll require dialysis. That's the ball ache. I don't mind the transplant, but dialysis is so inconvenient. Two types: haemo or peritoneal. I've studied the leaflets. I don't want haemo. That requires plumbing work, not in me but in where I live. New pipe work to install the machine, ugly machine in my beautiful flat, as well as hours attached when I could be living. No way! So peritoneal if is, even though that also requires plumbing, into me. A pipe inserted into my stomach area to allow for transfer of fluids. It's a night time system mostly, meaning day time remains normal. Inconvenient, certainly. Bloody kidneys.

The other inconvenience with it all is being on "the list". I'm expecting to be put on the list next month. It should take two to five years of waiting for somebody to die and for their kidney to be compatible with my blood and tissue type. That's two to five years of being near to the hospital just in case the call comes. That's very inconvenient too.

But life is about compromises. I'll give up some freedom in order to get that kidney. And in any case somebody will have to die for that to happen, which is also very inconvenient for that person. Seems odd to think that a living and breathing person could be walking about with my name on their kidney and a date on their demise not so far away. Such is the great recycle of life.

What's so frustrating to me is that for the most nothing is obvious with my condition. I have all my arms and legs. I'm not covered in a huge rash. I look "normal". And as such people forget. My own mother forgets. My friends forget. And I'm not going to keep mentioning it. There are far more important things in my life to discuss: travel plans, Brexit, Donald Trump's latest tweet.

There's the "living donor" thing too. Anyone can donate. It just freaks me out a bit, more so than receiving a deceased kidney. I'd rather not know the person. I find that easier to get my head around. Perhaps that's just me. I don't want to have that debt of gratitude. And what if it failed? What if they donated a kidney and my body rejected it. What a waste that would be. It's a bit of a head fuck for me right now. So my natural response is to cut it out of the picture and go with cadaverous. What a choice.

I'm pretty selfish on this. I get it. I'm depleting the national supply of deceased kidneys by my internalising. I know. It's not easy though. I could ask my brother or others, but something is stopping me. My family has never really been a close one. I'm not speaking to most of them because of Brexit. I'm a "Remoaner". More of that later.

I've put a bit of thought into whether or not to set up this blog. I'm a private person per se and it's quite hard for me to open up. I don't want this to be a "kidney blog". There's more to me than that, although that does appear to be the dominant issue facing me right now. That and how much I need to save up for retirement, will Brexit happen and when will Trump be impeached. Then there's the issue of my family. Notwithstanding I should be encircling them to give me a kidney I'm not really close to any of them. There's a bit of history, there, to explain, not least related to the recent death of my (ex) stepfather. I don't have the energy right now to explain how despicable he was to my family. Nor do I really want to talk about my lack of relationship with my natural father. My mother, I used to be close to, until Brexit. Our split over that, I believe, unearthed a number of issues I've nurtured over bad decisions I think she made as a parent. She's moderately elderly now, but I still have thirty years of memories that I'd much rather suppress. She's not a bad person. Weak perhaps, but not bad. But weakness invites bad, like an evil smoke flowing down the chimney of a family home, invading and damaging.

So onwards we go and let's see where it takes me!