Blockages & The New

It’s been a tough few weeks. It shouldn’t have been, but the green screen in front of which I live my life has an uncanny knack of producing a landscape that is very different to the one I had anticipated.

It started with two pieces of excellent health news on consecutive days. Firstly, I got the results of the latest cancer tests. I only had my prostate removed last October, but the consultant wanted a picture three months on. Thankfully, there was no trace of any cancer. He said that there was no rush to arrange the next round of tests and suggested December for the next investigations. Two days later, I went for the results of the annual diabetes tests and the results were great. Apart from some more weight gain, all the key organs are functioning well. Come back in a year.

A large space suddenly opened up. For 24 hours, I felt fired up and determined to get on with the two things that have been on hold for ages. The last time I went to the gym was March 2019. Then cancer, a heart attack, more cancer, a hernia, a third cancer recurrence and finally the recovery from losing a prostate all intervened. My fitness level is shockingly low and now is the time to get back on the treadmill. The other thing that has been on hold has been writing the follow up to Lines, which was published in July 2020. I know the stories I want to tell, but have been unable to write anything cohesive. Unsurprisingly, my mind has been elsewhere.

So, a large space opened up. But it quickly turned from being a space of hope and new beginnings into a void. A very dark void. Lots of issues that I thought I’d worked on since the first cancer diagnosis, returned in a much darker, disabling form. From feeling like I was on the cusp of a major second chance, I now became convinced that I’d missed my last chance. For over two months, I managed to find the energy to do my normal stuff with Steven, but the rest of the time, I hid under the duvet on my sofa. Lots of crying, lots of confusion and absolutely no focus or insight.

The universe sent me messages. I knew they were important, but I couldn’t decipher the code. Last year I brought a book about the history of Southall Football Club and it contained a photo of me at the first game I ever attended in 1970. One afternoon, whilst in the void, I was mindlessly scrolling through Facebook and saw an advert for a site called “Bob’s Non League Programmes.” And on the home page, Bob was selling the programme from that very same match vs Harwich in 1970. Why am I getting these reminders about that match?

I told the diabetic nurse about my resistance to returning to the gym and she said that she would refer me to their “health and well being coach.” My heart sank. I’m a bit sniffy about people with job titles like that. Besides, I know full well what my resistance is all about. The postman delivered Bob’s package and the fog in the void started to clear. My Dad took me to that first game. I remember his irritation during the match when the game was held up for twenty minutes after the goalposts collapsed. He never went back to another game. But I had fallen in love with the club and I was 11 and the ground was across the road from where we lived, so I went on my own. A few months later, I asked my Mum why Dad never went back. She was guessing, but I’m sure she was correct. Dad had been a very good non league player. He was 31 when I was born and had to retire due to an injury two years later. Mum’s theory was that although he could avidly still follow professional football, it was too painful for him to watch non league matches and be reminded that part of his life was behind him. Bang. Bob, you’ve done it. I am my Dad’s son. Back in 2019, I was in serious training for my first over 60s bodybuilding competition. Then all the health issues intervened and I grew old. For 5 years, my goalposts had fallen down. I know that I can’t get back to my 2019 condition and it’s painful to settle for less. Have some pity for the health and well being coach – I’m going to dump all this on him.

And what about Lines 2? I know that I want to tell Fred, the murderer’s story. I have follow up stories about Tom Fleetwood and James Neary from the first book. There are also a couple of good, solid, filler tales from new relatives that fit in with the other stories. But what is the theme? What links these stories together? Friday evening, the fog further cleared. It still throws me when strangers contact me, having read my writing. I received an email from a Mary who had read Lines. She told me that she lives in Harrow and she had been shopping in the High Street earlier and a shop was up for sale and she was pretty sure it was the shop my great great grandfather brought in 1830. I checked the address and Mary was right. It was the grocers shop that James Neary lived in with his parents and three brothers. All the brothers worked in the shop, except for James, who left home aged 13 to join the Navy. I don’t think he ever went back. For some reason I kept thinking of the scene in Field of Dreams where Ray and Terrence Mann pick up the younger ghost version of Archie Graham. The scene for the book immediately appeared- I go, in 2024 to Harrow to view the for sale shop and a voice behind me says, “Oi Mister. You going to buy the shop?” and I turn round to see a young lad in a naval uniform….

I’m no longer in the void. I don’t know where I am, but it’s not the void.

One other thing feels significant. Last year, we took on an additional support worker. He’s the cousin of one of the regulars and is a lovely guy. I’ve only been able to offer him one weekend shift each month. On Saturday, he expressed to me that he feels like he’s failing as he hasn’t bonded with Steven in the same way as the other workers. I told him that he certainly wasnt failing and that each person needs a long time to build up their own relationship with Steven. Yesterday, I watched them interact and it hit me that Steven is in a very different phase. He’s more confident and comfortable in his own home and understands the world so much better, so he needs different things in his support now. The other workers have been with Steven for years and the relationships are cemented. The new guy has a new, but exciting task. He’s the new breed, the gateway for Steven’s future. Steven is a different, mature man, so needs a different type of support to reflect that.

I may not know where I am, but it invariably is a place that throws up lots of fathers and sons stuff.

Massive Bellies & Getting Fitter

Steven’s old personal trainer from his Flex gym days, Adam, had a bit of a mantra that Steven managed to buy into. Whether it be encouragement to increase the speed on the treadmill, or a push for another couple of reps on the lat pulldown machine, Adam would urge: “Come on Mr Neary. Let’s get rid of our massive bellies and get ourselves fitter.”

I think the concept of “fitter” may have been a bit obscure to Steven, but he certainly got the idea of what a massive belly looks like. Embarrassingly so, at times. One of the Iceland delivery men is greeted each Saturday with; “Hello Jim. How’s your massive belly?” As Jim’s belly routinely nestles on the tray with our order in, he can hardly quibble at this description, but it’s a trifle awkward. Massive bellies have become a normal part of Steven’s description of people, as much as their sex and hair colour; “Buster is a man with no hair and a massive belly from Lip Up Fatty.”

In tune as Steven is to the size of other people’s bellies, he doesn’t apply the same analysis to his own and over the past few months, his belly has verged into massive territory. I’ve been having chats with the support workers about what we can do about it, but the tricky bit has always been how to get Steven to understand the importance of belly reduction. The message has to be very clear and very inclusive.

To show how an unclear message can go terribly wrong, there is a good example from a recent Top of the Pops marathon. Steven has been familiar with The Beautiful South song, “You Keep It All In” all his life. He would place it in his top three of all Beautiful South songs. He loves the video, especially the bit where Brianna Corrigan slaps the penguin. It reminds Steven of the time in 1995 that Auntie Rose offered him a chocolate wafer, “Would you like a Penguin, Steven? No? Well, buggar you then.” His recall of her directness always makes him chuckle. Anyway, the song came on Top of the Pops and as we sang along, the support worker said, “It is a problem if you keep it all in. The stress builds up and you might die.” Aaaagh. Immediately, Steven panicked. “Steven Neary’s not going to keep it all in and he’ll die.” In trying to reassure him, the problem was the word “it”. What is it that is being kept in? We couldn’t find an explanation that Steven could get his head around and what followed was an hour or so of deep anxiety. We didn’t want to make the same mistake when discussing diets.

Fortunately, we could make it inclusive. Des, the support worker, has been talking about doing something with his own weight, although it would take a huge stretch to consider Des’s belly fell into the massive category. My own belly is still recovering from the hernia surgery and my half hearted attempts to get back into my pre-hernia trousers. I’ve had to accept that my bodybuilding days with a six pack are long gone, but that doesn’t mean I’m consigned to live the rest of my life with elasticated waistbands.

So yesterday, we had a team meeting: me, Steven and Des. I started by announcing that all three of us had expanded bellies and then fell back on Adam’s old motivational speech. I’m not sure if it was the nostalgia value, but Steven got on board. Then we got on to the nitty gritty of discussing reduction in certain intakes, with particular emphasis on chocolate and garlic bread. What seemed to help was not saying that we have to cut things out completely, but cutting down and changing the timings of certain foods was easier to buy into. For example, about 9pm, Steven likes “a lovely surprise.” It’s not the best timing because he has his surprise and then goes straight to bed. So Des suggested that he has his lovely surprise with his lunch and much to my surprise, Steven seemed enamoured with this new plan.

It took me back to when Steven was in the ATU. Their position was that Steven was “greedy” about food. I thought that was both judgemental and wrong. Steven approaches food like everything else in life and sees the finishing of a plate of food as task completion. A CD cannot be cut off mid song. A conversation cannot be interrupted by a phone ringing. The consumption of food, I think he frames the same way: it’s a task to complete. I cooked a roast on Easter Sunday and I could hear Steven gagging over the 5 sprouts on the plate, but it wouldn’t occur to him not to eat them.

Let’s see how it goes. Vanity works for me and Des, but Steven needs a different motivation. And there will probably be ongoing questions. After the team meeting, Steven went off to his bedroom to reflect and 10 minutes later, he came into my room with the concern; “Steven Neary can still be fitter and have Green Pringles on Christmas Day?”

With any luck, by the end of the summer, I’ll be able to post some photos of the three of us back into our pre massive belly trousers.

Perhaps we’ll be wearing belts.

The Powerful Play Goes On

Yesterday, I got a cab home from Steven’s. It had been a fun, but intense weekend. As well as our regular weekend routines, we also had the return of Gladiators; an event that Steven has waited 24 years to see and one that left him dizzy with excitement. He didn’t stop talking the whole 48 hours and I had to be on my toes to keep up with all his reference points.

The cab driver was Abdul. You may remember Abdul. He is that lovely man who took an afternoon out last year to drive me to Seer Green and stayed with me as I explored the village that had been home to my family from 1700 to the mid 1800s. I have profound conversations with Abdul and yesterday he asked me whether nowadays we prepare our children for the future in the same way as previous generations did. I heard myself voicing a thought that I have regularly which is my anxiety about Steven managing the future because, due to my influence, he is quite an old fashioned 34 year old. Many of his interests aren’t so popular these days. He likes the tactile aspect of holding a book or looking at a CD sleeve, so has little enthusiasm for paperless entertainment. His language can be from a different era. I delight in how he adopts a turn of phrase that may have even been considered dated when I was growing up. When he’s done some clearing up, Steven will announce to the support workers that everything is “ship shape and Bristol fashion.” Quaint and amusing, but will anyone have the first clue what he’s talking about? Abdul was his usual pragmatic self and told me that I had done my best and nobody could expect anything more. It choked me up because I remembered Morse saying exactly the same thing to Lewis as they drove along in his Jag one episode.

These thoughts were flying around my head as, later in the evening, I sat down to watch the latest Triggernometary episode, which was an interview with the Irish psychotherapist, Stella O’Malley. Stella gets a very bad rap online, mainly for her work with teenagers who believe they are a different gender to their birth sex and want to transition. I always have problems squaring the way Stella is presented by her critics online and the person I experience whenever I listen to or read her work. I hear a warm, compassionate, very funny woman who is on top of her subject. Anyway, during the interview, Stella was asked a similar question to the one that Abdul asked me: do teenagers today have it harder today than people of my generation had when we were teenagers? She focused on two areas that touched so many nerves for me, she made me cry. I am usually nervous about writing about this as my fear is it will be dismissed as trivial, when to me they represent the essence of being human.

Stella acknowledged that in 2024, it is profoundly tougher to be a teenager that it was if you were a teenager anytime since the idea of being a teenager took root, for many people the concept of a teenager began in the 1950s. Two anchors that don’t exist like they used to are the young person’s relationship with (a) their family history, and (b) music. You can see why I got choked up: these are the two themes that I write so much about and are certainly the inspiration for writing “Lines.” When we understand our family history, we embody those powerful lines of Whitman, “The powerful play goes on and you may contribute a verse.” In Dead Poets Society, Robin Williams recites that line and asks the nervous Ethan Hawke, “what will your verse be?” In working out what our verse will be, we have to have a sense of what the previous verses have been and we have stopped being inquisitive about that. I’m making generalisations, but I suspect for many people, those verses have been lost forever.

Music has changed, or rather, our relationship with music has changed. Now, music is just there, but its influence has waned. Music drove all the major youth movements from the Sinatra bobbysocksers through several decades that followed. It was the source material we used and the pegs we used to hang our identities on. Rites of passage were invariably linked to music. For me, my late teenage identity as a Mod wouldn’t have happened if it hadn’t been for the music of The Jam and The Who. Now, identity is explored and expressed very differently. Your fumbling discovery of your sexuality was played out by screaming at The Bay City Rollers (Bros, Take That…..) or by the Debbie Harry/Boy George poster that hung on your bedroom wall. I can’t imagine a teenager in 2024, queueing for three hours outside Rumbelows for the latest George Ezra album. All that has gone. Everything goes eventually, but historically what replaces it, doesn’t make life considerably harder. An anchor goes, but was replaced by a stronger, more modern anchor. We weren’t left without an anchor at all.

Where does all this leave me and Steven and Abdul?

As Abdul said, Steven will probably be okay because he has those two anchors that I have helped nurture. They were important to me and I initially assumed, then learned over time that they were important to him. Our three hour, Sunday morning Top Of The Pops session encapsulates both anchors of history and music. I’ve written before that Steven understands history without understanding dates. Each Sunday, whenever a song comes on and the clip is in black and white, Steven wants to know what “little boy Mark Neary” was doing whilst The Kinks were singing Waterloo Sunset. I tell him that little boy Mark Neary was at Southall outside swimming pool with Granddad John and Uncle Bob and immediately he understands a little bit more about me. And a little bit more about himself. And then the next song will be Alice Deejay singing Better Off Alone and “little boy Steven Neary” has entered the narrative and he can see how he has travelled from A to G and be the man he is today, learning disability and all. He is contributing his own idiosyncratic, rich verse.

The return of Gladiators serves a similar purpose. Yes of course, it has a nostalgic value. But it tells us who we are in the present too. It joins the dots between the then and the now. Steven loves bringing the John Anderson line into his day to day life. Yesterday morning he laughed as he said to me, “Mark Neary, you can eat your breakfast on my first whistle.” A few minutes later he was talking about Julie making him a bacon sandwich before one of the Gladiators finals and that led to a conversation about his mum not being around anymore.

The powerful play again.

Gauntlets

I’ve been watching the Mr Bates vs The Post Office episodes and I can’t shift this crazy thought from my head:

How about “we” (I don’t know who the “we” is and I suspect that I’m not part of the “we”) sue the UK Government in the matter that it’s negligence in ignoring years and years of evidence has directly led to the human rights breaches on thousands of learning disabled people held in institutions?

What does that sound like? These are all early, top of the head thoughts, but I remember how, several years ago, a blog post that I wrote led to several people coming together to produce the LB Bill. Think of this as me lobbing a gauntlet hand grenade from behind the privet hedge of the convalescence home.

Nobody else is going to do anything. In the early days of Rightful Lives I was very hopeful that the EHRC would come to our rescue. They promised that they would look into pursuing legal remedies, but seven years on, they’ve demonstrated that they don’t have the will. An annual update that they are still looking into matters doesn’t cut the mustard when you’re spending your 100th day in an isolation room. There are sexier, more high profile groups in society for them to piggyback.

The charities aren’t going to change their modus operandi and do anything other than call upon the government to do things. I know the big charities occassionally provide excellent support to individual families, but cynically that is to promote and strengthen it’s own brand. They are not interested in changing anything for the masses of their membership because it might result in them becoming obsolete.

And of course, the government and those in NHS England, the Department of Health, the CQC will continue to do fuck all, except call upon the assistance of so called experts by experience (I.e. us) to collude in the illusion that someone is doing something. A new focus group; a new method of collecting data; another report. I’ve been immersed in this shit for 15 years now and nothing has fundamentally changed in that time. Many health secretaries have come and gone in those 15 years and their legacy of their time in office for people in ATUs is scandalously poor.

Of course, there have been individual successes. Rare cases that give you hope as they celebrate their 15 minutes of fame. But all the people I’ve mentioned above like stories like the Nearys. We can be used and manipulated as indicators that something is happening. Have the figures of people detained in institutions really decreased in the last 15 years? Not really. The handful of individual successes that make us joyous are easily outnumbered by the conveyor belt of new lambs to the slaughter. New families appear, who are unaware of the history of human rights breaches and are cynically used in the cyclic presentation of “Goodness, look what’s happening to learning disabled people in (insert year). I’m just as guilty. I’ve just mentioned my 15 years of being an expert by experience, but there were decades before I grew skin in the game. Basically, the history counts for nothing because the horrors of the present are used to detract, rather than manouevre the troops.

The number of human rights breaches are endless. Not just the number of people for whom human rights don’t matter, but the sheer number of human rights articles. The right to liberty, the right not to be treated inhumanely or without dignity, the right to a private and family life. That’s three articles that are impacted, but I’m sure some serious legal minds could extend that charge sheet.

Will this gauntlet land anywhere?

I can’t do much more than this for two reasons. Firstly, although I’m much better, after 5 years of major health issues I’m not fit enough to actively campaign. A long tube journey to discuss strategies with NHS England is beyond me, both physically and mentally. Secondly, after the bigotry allegations last year and my resignation from Rightful Lives, it is obvious to me that I have lost the trust and respect of people that I used to be able to work with on campaigns. Fresh blood is needed; people who can campaign in a more modern way.

I suspect that the contents and the sentiment of this blog will land in the void. Watching the Mr Bates drama, I was struck by how much Mr Bates resembled both in appearance and character, Graham Enderby. Graham will always be an inspiration to me, partly because he never gave a toss about the prospect of his efforts landing in the void. He carried on, throwing down gauntlets to the powerful and powerless.

Anyone interested?

Erasure Are Relegated

Steven’s stereo sits on top of the last remaining part of a 40 year old wall unit combination. Back in 1983, it was massive and took up one whole wall in our living room. It had glass display cases, a drop front writing bureau and all manner of shelving systems. The solitary remaining piece once had a glass door, but it is now like an open fronted sideboard. It is very sturdy and may well see both me and Steven out.

The unit has four shelves and when we set it up as Steven’s CD storage library, he chose a simple, but short sighted filing system. His most favourite Artists were allocated the bottom shelf. Secondary favourites are housed on shelves 2 to 4. Sitting next to the unit is a Heath Robinson style 16 drawer surplus unit and into this slightly out of sight, out of mind unit go all the take them or leave them Artists and the compilation albums. Solo artists are filed by their first names, so you will find Bonnie Tyler under the “Bs” rather than the “Ts”. I’m more conventional and if it was down to me, Bonnie would be with the Ts, but it’s Steven’s preference and my discomfort can be massaged by where he’s filled Adam Ant and Sandie Shaw.

I say that Steven’s system was shortsighted because it didn’t pay heed to the longevity of The Pet Shop Boys and the ever changing career trajectory of Paul Heaton. And nobody, not even the most astute care planner would have considered back in 2013 that Abba would make a comeback. These quirks of pop culture fate have played havoc with the “favourites” shelf.

I’ve buried my head in the sand for over three years over this vexed issue. Birthday and Christmas present CDs since 2020 have piled up on the DVD unit, but we’ve reached breaking point. The CDs now obscure the DVDS behind them. This means that when looking for Steven’s “Haircut 100 in Concert” DVD, we end up on our hands and knees, wrist deep in recent compilation album purchases. Something had to give.

Today, we got another 4 box storage unit that fortunately will nestle quite nicely on top of the other 16 drawer unit. It nearly reaches the ceiling, but Steven is a tall bloke and if we stick to his alphabetical ordering, he should be able to lay his hands on an Ace Of Base or an Alvin Stardust in an emergency.

But it’s led to some major, almost sad decisions. Something, or someone has to give on the favourites shelf. Take That have a new album out shortly and Neil and Chris have released yet another greatest hits collection that is top of Steven’s Christmas wish list. So, I laid all the people from the favourites shelf out into piles on the carpet and got Steven to chose which act has to be relegated to the second tier.

I’ve ruined the punchline with the title of this post, but, showing not a little respect, he chose Erasure. Vince and Andy will make for themselves a new home on shelf two, coincidentally alongside Vince’s previous incarnations with Depeche Mode and Yazoo. It’s not like they’ve been cancelled or sent to Coventry, but I couldn’t help but feel a trifle melancholy.

It comes to us all. For years, we take pride of place on the favourites shelf and then time and age sees us nudged backwards to a less visible space. Come to think of it, my life over the past three years has followed a similar, Erasureesque arc.

Still, at least I haven’t gone the way of the Kid Creole & The Coconuts and the Craig Mclachlan CDs. I won’t even tell you where they’ve ended up.

My Knob & I

It was four weeks ago today that I had my prostate removed. I won’t sugar coat things; it’s been a tough four weeks since the surgery. Ten days post-op with a catheter in-situ; the muscle clenching indignity of the catheter’s removal at the drop in clinic. And now the best part of three weeks discovering the realities of post prostate removal (temporary) incontinence.

On Thursday, I had my follow up with the consultant. I like him enormously, and my instinct is that he likes me too. It was all, extremely good news. The cancer cells have been excised. He’s not the slightest bit bothered or interested in my leakage (“Oh Mark. It’s still very early days of recovery. Are you doing your pelvic floor routine?”) (I am. Religiously. Four times a day). He wants me to stay under his care, rather than refer me back to Hillingdon, which pleased me no end as that was the suggestion I was planning on putting to him. And no check ups or surveilance routines for six months. Of course, I’m not going to tempt fate and say “it’s over”, but after five years, I do feel like I’ve got a little bit of breathing space back.

The next day he emailed me his letter to my GP. There was a very interesting turn of phrase in it:

“Following his robotic prostatoctomy, the cancer cells were completly excised. This is excellent news for everybody.”

Everybody? Obviously I’m delighted. Steven will probably be happy that I won’t have any hospital enforced absences from our Saturday taping sessions. Friends and family have expressed their joy and relief. But everybody may be stretching the range of my news, although I’m hoping for a mention from The Vengaboys during their encore at the Butlins, “Step Back In Time” festival.

One person who is understandably wary about the news is my knob. My goodness, has he been through the mill? Five years of umpteem instruments being inserted into him: catheters, cameras, lazers, robots. You name it; he’s had to accomodate it. And quite frankly he’s had enough. My willy reminds me of Manuel and that episode of Fawlty Towers where the guest dies. Exhausted with carrying a dead body around the hotel for the entire episode, Manuel retires to a laundry basket, crying, “I stay here. It’s nice.” My knob has shut up shop in a metaphorical laundry basket.

Just popping back to the catheter removal drop in clinic for a moment; it was chaos. There were 21 of us in the waiting area; 19 men and 2 women. We had obviously all just had our catheters removed because each one of us were sitting on a chair, nursing one of those cardboard urine bottles that you have to fill before they let you leave. And there were two toilet cubicles. For those readers who have never been cathertered, whilst you have the blasted thing, your knob retreats in on itself. Normally, it dangles or loiters, but not having any work to do, it nestles into itself and hibernates. It’s a very rude awakening, when seconds after the catheter is removed, it is expected to spring back into action and fill a pot. So it was, that due to the lack of toilets and my knob’s overall resistance to such an abrupt awakening, after two hours, my cardboard bottle held what looked like a solitary Sinead O’Connor tear. If I’d wrung my pants and trousers out, I’d have probably filled at least half the bottle, but I had nothing to deliver after two hours. If that isn’t bad enough, after ten days of inactivity, the knob had found the time to pop out to Argos and treat itself to a garden sprinkler attachment. On the one occassion that I was able to elbow my way into a cubicle, my pee went everywhere: up the wall, up the cistern, over the floor, over me. As another crossed legged patient was rapping on the cublicle door, I was on my hand and knees clearing up the shower.

Since then, my willy refuses to play ball. I don’t blame him. He’s exhausted, badly scarred and has lost all trust in anyone in a medical uniform.

I’ve taken to talking to him. I tell him that I don’t really want to add incontinence pads to my Sainsbury’s favourites list, so if he hears me cough, or notices me get out of the armchair, he doesn’t have to take this as a cue to pee. I natter away to him whilst I’m doing my 10 sets of pelvic floor exercises, four times a day. I ask him to visualise his muscles strengthening, in much the same way that I used to picture 20 inch biceps whilst doing barbell curls. Is it working? Slightly, although I’ve been getting some perplexed looks from my neighbours.

I know this post has come a long way from my usual scribblings about social care, but I wanted to pay my own small tribute. I am proud of me and I’m proud of how Steven has managed during my lengthy absences. But I’m also very proud of my knob. Like the characters in Lines, he’s stoic and now he’s entitled to a little rest.

Steven always chuckles over The Sweet song, “Little Willy”, particularly the line, “You can’t push Willy round. Willy won’t go.”

It’s funny how, as you get older, something that I once dismissed as bubblegum pop, is carrying my most important life lesson for the moment.

Sunday Delight

If ever I say to Steven, “you’ll never guess what programme is coming back on the telly”, he always replies expectantly, “Top Of The Pops?” He loved that programme. Although we have every Christmas episode from 1992 to 2003 on vhs tape, it doesn’t really satisfy the craving to revisit Haircut 100 in their prime.

A few weeks back I had to buy Steven a new TV and inevitably it’s a smart TV. It’s posed a bit of a dilemma. Steven loves his three epic sessions each week on the PC where he disappears down a variety of YouTube rabbit holes. How would he now feel about accessing YouTube on the telly? Would you believe we actually held an emergency zoom staff meeting to discuss the dilemma. The general consensus was to leave YouTube for the PC as it gives Steven so much pleasure and has become one of his fundamental weekly routines.

I went along with this, but couldn’t get out of my head, Steven’s yearning for a Top of the Pops revival. So, I set about creating Top of the Pops best bits playlists: 50 songs in each playlist. We started viewing them 3 weeks ago and my hero Dad status has gone stratospheric. We start about 9am and it takes about 3 hours to get through all 50 songs. Steven insists that the support worker remains glued to the dining table chair so that he can educate him. The support worker is pretty clued up, but he’s a little weak on anything pre 1990 and that is where Steven comes into his own – “Francis – that man singing is Marky Mark. He’s got a Funky Bunch. Marky Mark is singing Good Vibrations. Like The Beach Boys. Same words, but different music.” I love it and it has its practical benefits too. I’m sure all this newly acquired knowledge will stand Francis in very good stead for his next level NVQ in care.

I have to admit that I’ve thoroughly enjoyed compiling these playlists. But its come with it’s fair share of problems though. Most people know that back in the 1960s, the BBC, in their naivety used to wipe the tapes, so there is a real paucity of material from that decade. I think that there is only one clip of The Beatles that survived. By the time we get to the the 1970s, we hit on a new problem – Jimmy Saville. Any episode with him in has been blocked. And he hosted a bloody lot of episodes. I’m fully behind the idea that we don’t want to see that evil man on our tellies, but couldn’t the BBC just edit his introductions out. Tony Blackburn is still with us; he could earn a fortune in new voiceovers. The other thing about the Saville legacy that irritates is supposing you were the drummer in Kenny and you want to show your grandchildren your sole Top of the Pops appearance doing The Bump. Massive stars and one hit wonders have had their musical history erased because of that horrible man.

Every cloud has a gold lining though, so even if half the 1970s have been erased, we still have more Erasures and Pet Shop Boys than you can shake your stick at. “Francis – that is Chris Lowe. He is the man with his sunglasses on, even though its winter.” Occassionally, Francis is able to impart to Steven some knowledge of his own. Steven was made up to learn that Dr Alban comes from the same village as Francis. But then The Thompson Twins come on and the proper teacher/pupil boundaries are restored – “Francis – that’s Tom Bailey. Same name as Steven Neary’s geography teacher.”

Steven makes a noise of total pleasure that I can only describe like a purring. And my goodness, didnt he half purr yesterday when the drum introduction to Bucks Fizz’s New Beginnings sounded. Another delight for him has been watching the full clips of songs that only warranted half a chorus in the compilation section on the Christmas videos. Yesterday we counted that Peter Andre threw open his puffa jacket 4 times to reveal his abs during the full version of Mysterious Girl.

You can probably tell that I’m getting as much fun out of this as Steven is. It’s nice to find, at both our advanced ages, something that we can share and enjoy.

Next weekend I’ll be in hospital for my prostate removal, so I’ll miss episode four. But I’ll be there in spirit. I’ve brought some new earphones for my tablet and I’m sure my recuperation will be aided hugely by the music. If my consultant is around, we may be able to act out our Steven and Francis roles:

“Dr Giles. That’s The Rubettes. The man singing Sugar Baby Love is Alan and he always wears a white beret. Even in summer.”

Bladdering On

On 4th July, I met my local cancer consultant for the results of the latest surveillance biopsies. It wasn’t good news. They had found a recurrence of cancer cells in my prostate. This is the 2nd recurrence following the original tumour in my urachas back in 2018. The first recurrence in 2021 was also in my prostate. The consultant wasn’t hopeful; in fact, he already suspected that irreversible damage had happened to my prostate and they wouldn’t be able to carry out the resectioning procedure again without me being left incontinent and impotent.

He laid two options on the table. For me, they sounded like the choice between a turd sandwich or a cup of vomit. Option one was to remove my bladder, bowel, prostate and urethra. Live the rest of my life with bags to collect my waste. If that wasn’t bad enough, he said that the only way that he could access those organs would be to remove the mesh and cut through my hernia repair. He was telling me all this just three days after I had finally been given the all clear that the hernia wound had healed and my seven months of thrice weekly visits to the drop in clinic had ended. If I had the surgery, the abdominal wall would collapse again and I would have to rejoin the waiting list for a new repair. The last wait had been three years: no swimming, no gym, no lifting of any kind.

The second option was to do nothing. Except increase the frequency of the surveillance. Mine isn’t a particularly aggressive cancer, but doing nothing obviously comes with an unspecified end date. And sooner rather than later.

Since 4th July, I’ve spoken to many medical professionals, but none of them have been able to give me a satisfactory answer to my question – “Why do you need to remove all those organs? There has never been any cancer in my bladder or bowel. Why not just remove the prostate? The response I kept getting was that it was a precautionary move. The chances of the other organs eventually being affected is high and they didnt want to put my body through the stress of multiple surgeries. I kinda get that, but what about my quality of life. And having 2 monthly surveillance cameras up my willy comes with it’s own physical and mental stress. Not to mention the stress of another couple of years of life with a collapsed hernia. Grim.

Charing Cross got involved again. I was pleased. Most of the staff I’ve met at Hillingdon hospital have been lovely, but I’m always aware that for several years, their CQC rating has been “inadequate” in every single area of assessment. It hardly fills one with confidence. Charing Cross is recognised as the country’s leading hospital for urological cancer and I’m under the lead consultant. I feel in much safer hands. And he makes me laugh which is always a good sign in my books.

Two weeks ago I had a telephone consultation with the top man where I was expected to give him my big decision. Although I was leaning in one direction, I hadn’t made a firm decision, but it was to no avail anyway. Giles mentioned that Hillingdon hadn’t sent him all my histologies and he wanted to discuss me again at their next MDT. I’d just had another scan done and he didn’t have the results, so D Day was postponed for a fortnight.

By last weekend, I had decided to go for the do nothing option. I knew that it would hasten my end and it’s been a very tough few days dealing with the reality of that. I have long since tended to my affairs on practical matters, but emotionally I’ve been all over the shop. Weirdly, because it’s the thing that terrifies me the most about my death, the most stable times have been when I’ve been with Steven. His conversations, our music sessions, his jokes have carried on as normal and I’ve found, to my surprise, that I’m completely present when I’m with him. I’m an emotional wreck when I get home, but in the moment, well, I’m in the moment.

Recently, Steven has invented a new genre of joke. It’s based on his sense of wordplay. And his own jokes crack him up. Me too. Last Sunday, I was having a little weep in my bedroom and Steven burst in: “Dad. Richard Madeley’s wife’s called Judy Finnegan. Judy Finnegan is a lady with blonde hair and a pink jacket and black skirt. (He expects me to repeat all this back, so he knows I’ve understood). Dad. A bottle of vinegar. Don’t drink the vinegar, it’ll burn your throat. Dad. Finnegan and vinegar. Sounds a bit the same. That’s a good joke.” And he collapses on my bed in laughter. And for a few minutes, my prostate goes out the window.

Thursday was the rescheduled appointment. Giles sounds very chipper. He asks me if I’ve made my decision, but before I have the chance to tell him what it is, he says that the outcome of the MDT is that he has a very different proposal to put to me. He then relates an exchange from the meeting:

“Norma Gibbons attended the meeting for the first time. After hearing about our proposal and your reluctance to that proposal, Norma said, ‘why don’t you just remove Mr Neary’s prostate?’I said that was the question Mr Neary had been asking and Norma replied, ‘well, it’s a bloody good question’.”

I have no idea who Norma Gibbons is, but thank you Ms Gibbons, you’ve breathed fresh life in me.

So, this is the new proposal: Removal of the prostate only, using robotic surgery. Giles has checked my latest scan and believes he can go in above the hernia repair, so will keep all that reconstruction intact. 24 hours in hospital. 5% possibility of temporary incontinence and 20% chance of permanent impotence. I can live with that. I can live (a bit longer than I was anticipating 24 hours earlier).

One thought I’ve not been able to shift since is how similar this is to what happened to Steven back in 2010. One person from a MDT makes a decision and everyone goes along with it. Any challenge from within is sidelined, whilst any questioning from me is framed as “problematic and uppity.” In both our cases, it took an intervention from outside the main gang to shift the cemented position. Steven needed the High Court and Justice Peter Jackson to save his life: I needed Norma Gibbons. But just think of the turmoil that could be avoided if these rigid MDTs were more open.

I’m off to Steven’s for the weekend, lighter in step and in heart. He’s already phoned me with his list of songs for today’s compilation tape and today’s joke. One of his support workers is called Alan Toluwasse.

“Dad. Alan Toluwasse. Sounds a bit like Shirley Bassey.”

Shirley is on duty today. I hope he enjoys the joke.

Stories

Telling stories. Connections. The impulse to be part of a greater story.

I’ve always had the impulse to hear, and to tell, stories. I was reminded and heartened the other day to see that Steven shares that impulse. As is usual with Steven, the gateway to a good story is music. We were listening to The Love Affair performing Everlasting Love. Over time, and especially if the video is in black and white, Steven has learned that he is listening to a song that predates him, and so I become the focus of the narrative that he seeks. Whereas a Glam Rock track (or anything from Boney M) gets hooked on to a “big boy Mark Neary” story, Steven knows that if it’s a song from a black and white era, we’re in “little boy Mark Neary” territory. So as Steve Ellis was belting out his incredible vocal, Steven wanted to know “where was little boy Mark Neary?” I like those moments because they give me carte blanche to pass on to Steven a bit of family history.

We always seemed to be having family parties when I was growing up. Any old excuse for a get together and it goes without saying that Christmas Eve and New Year’s Eve were prime times for a knees up. At the time of Everlasting Love being number one in 1968, I would have been 9. My cousin Hazel had been a Tiller Girl in the late 1950s/early 1960s. The family were puffed up with pride that Hazel had done a successful summer season in Cromer with Billy Dainty. By 1968, Hazel was married and had not long had her first child, but the anticipation of seeing her dance at a family party was huge. Well, it was for me. Hazel wore a charm bracelet at special occasions and over the years, I became fascinated that each party seemed to beckon the introduction of another new charm added to the bracelet. By 1968, her wrist jewellery must have been weighing her down. One of the trends of modern dancing in 1968 was that it involved lots of wrist action. The wrists moved as much as the rest of you. I could never master the move, but Hazel had it sussed. Her wrist dancing epitomised grooviness. Anyway, Steven’s favourite sort of story is one that involves an injury, so I was able to tell him of the time, during some energetic wrist dancing to Everlasting Love, that Hazel accidentally smacked little boy Mark Neary in the gob with her charm bracelet. Steven found this incredibly funny and took himself off to his bedroom to retell the story to himself and I guess, file it away somewhere in his massive compendium of musical stories. I can promise with absolute certainty that next time he hears Everlasting Love, Steven will relate the charm bracelet story to whoever is in attendance at the time.

From the well of family party stories, I like to tell him, and he likes to hear, the war stories. As a small boy i was fascinated that at some point about halfway through the party, the guests would split into two rooms. By sex. This was the days when you kept your front room for best, so the women tended to stay in the front room with the music. The men would retire to the “other room”; the room we lived in every other day of the year whilst the front room was in mothballs. Cigars would be lit. The Double Diamonds would be passed over, in favour of a bottle of whiskey. And one by one, each uncle would tell a war story. Two had been in the navy and two in the army. I think there must have been an unspoken pact because the stories were never gory. Perhaps, they spotted little me hanging on to their every word, so felt the need to censor out the more bloody, deathly details. It meant the stories were about the japes. The dodgy deals that were done with the locals in Singapore. Each troopship or regiment had a joker so their adventures would be related with much mirth and the slapping of thighs.

I have a big regret. I remember very little of those stories. As a young child, they didn’t mean much to me. By the time I hit my teenage years and The Love Affair had been replaced on the turntable by The Sweet, I had stopped assembling with the men. I had taken it upon myself to be the DJ and my job was to keep the music going in the front room. I’m sure the men were still telling the same stories in the other room, but I was more interested in teaching Hazel the steps to the Latin hustle. So at a time when I would have appreciated the stories, I was otherwise engaged.

So, I’m left with gaps. Big Dunkirk gaps. And I can’t fill in those gaps for Steven, neither from first hand experience, or second hand from the party anecdotes. Steven doesn’t mind, but I do.

History is important and we should treasure it. And even if we weren’t there at the time, a part of us, a future part of us, was there.

The Opening Of Spaces

Listen very carefully; I will say this only once.

Good moaning. I’ve always maintained that I don’t want to write a cancer blog. I’ve alluded to my cancer predicament in several other pieces, so this blog is just an update after the events of the past week. I’m going to post it with comments turned off because I’m not looking for advice and certainly, not sympathy. Please read it as a news report.

I met with my consultant on Tuesday for the results of the biopsies. They found cancer cells in my prostate. This is the second recurrence, the last being in January 2021. They removed as much as they could whilst I was under the general anesthetic, but due to the position of the cells, it is impossible to say whether they’ve grabbed all of them. To complicate matters, the procedures that I’ve had to obtain the biopsies and to remove the cells in the past are no longer possible without causing serious permanent damage (i.e. incontinence amongst other things).

So, I’ve got two options:

Option A is to have a full removal of my bladder, prostate and possibly my bowel. That will obviously mean that I will need a bag fitted to perform the function that those organs carry out. And, of course, that will still be no guarantee that the cancer will return somewhere else. One further complication for me with this option, is in order to carry out the procedure, they would have to cut through my abdominal wall, which would mean the hernia would collapse again and all the surgery and treatment I’ve received for that over the past three years would be wiped out. I’ll be back to square one, hernia wise.

Option B is to do nothing. They would increase the frequency of the surveillance (to every three months), but actual treatment options would still only be those I’ve mentioned above.

It does all boil down to a decision between the length of life and the quality of life.

This hasn’t come as a complete shock as they brought up Option A back in 2021 when the cancer first returned. I’ve had plenty of time to prepare myself for this moment, but it’s still a big shock to reach this crossroads. I prefer Crossroads that involve Meg and Sandy.

That’s it. I’ve got 4 weeks to make my decision. I had a lovely chat yesterday with someone from prostate Cancer UK that was very helpful.

I suspect that I’ll make this decision in exactly the same manner in which I’ve made all my major life decisions. I collect information, but ultimately, rely on my gut instinct to reveal the solution to me. My instinct has always been about opening up spaces, rather than closing them down, so I’m pretty sure where I’m going already.

Watch this space. There’s still a lot of writing to be done.