I’ve been wrestling with quite a few issues over this past month. And I’ve just discovered that I’ve got an unexpected week off, this coming week. All my clients are either going on holiday, have other medical appointments or have jobs around the house that need attending to. This might just be the kick up the bottom that I need.

The matters that I’ve been wrestling with, in no particular order, are:

  1. What am I going to decide when my treatment/investigations start up again in September? Am I ready, both physically and mentally, if more surgery is needed?
  2. What is the next book going to be about? I’ve got two ideas floating around. Will it be a direct follow up to Lines, or something completely different?
  3. Am I too old to still be a counsellor? I see the direction my professional body is going in and I find it hard to square that direction with my fundamental beliefs of what counselling is all about.
  4. Do I still want to manage a direct payments package? Do I want something less stressful. Or is this just a sign of my weariness, tangling with issues 1 to 3 above?
  5. Can I do anything to make Steven appreciate 1970s disco more?

The first one is a bit of a no brainer. What’s the choice? Carry on or stop? Carrying on comes with no promises, but stopping does. I don’t want to stop and die before Steven can name each member of Tavares and knows all the words to Strut Your Funky Stuff. So, I suspect the autumn will bring more backless gowns, more cameras up the willy, more catheters. The new costumes and accessories of my life.

For the next book, I was planning on picking up on the theme of stoicism. I’ve carried on the research and found even more relatives, doing incredibly stoic things. I’ve also discovered a branch of the family that I fear, if I include them in the book, I will be cancelled. Researching one of my great grandmothers, I found a whole branch of her family that emigrated to America in 1770. That led me to discovering Ichabod Quinn, the grandson of the original migrant. I came across a fabulous American archive site that holds letters from ordinary citizens and it had half a dozen letters that Ichabod wrote to his wife who was left to run the farm whilst he was away fighting in the Civil War. They are shocking and touching in equal measure. He is obsessed with the welfare of the pigs and doubts that his wife is fulfilling her duties in tending to them. But the letters also reveal that the Quinns had slaves, most notably a man called Tom, who was the only person that Ichabod trusted to look after the pigs. I’m finding it deeply uncomfortable encountering this history, but it happened and I have to decide whether it is a story to be told.

I keep harking back to 1999. At the time, I was working for a local counselling agency. My first young, male client was a chap called Charlie and quite quickly within the agency, the management decided that I was pretty good at working with young male clients and it began the best time of my working life. Over the space of a few months, I got several referrals, all young guys in their early twenties and totally unexpectedly, I discovered my niche. They became my main client group for the next ten years. 22 years on, I am 22 years older and I’m not sure that I serve that client group as well as I used to. The world has changed. I don’t understand their reference points as much as I did. Perhaps the generation gap has grown too wide? And I don’t belong in my professional association anymore. My copy of Therapy Today arrives and it goes straight in the bin, without leaving its wrapper. Even without the generational problems, I’m expected to work with them in a way that goes against everything that I believe about the nature of the therapeutic relationship.

I don’t really expect to give up the direct payments package. Like with the cancer treatment, what’s the choice? It’s the same old, same old, really. After 12 years of this, I’m tired of the endless micro management and distrust that my council seems to have towards all its clients. The anticipation of threat haunts me. The other day, I ordered Steven a new bookcase from Amazon. At the checkout, I accidentally used the direct payment card instead of his. I immediately rectified the error and transferred the money accordingly, but sweated buckets, awaiting the phone call from the direct payment’s manager who surveils your online activity from her computer screen. Nothing happened, but history has taught me to be wary: “Mr Neary, my job is to protect the public purse.”

The good news is that I can snap out of my weariness and naval gazing with the opening bar of a disco classic.

After all, who can lie on the sofa, meditating about mortality, slavery, one’s career and the petty bureaucracies of local government when Sylvester starts telling us that You Make Me Feel Mighty Real…

Come on, Steve. Put your dancing shoes on.

Putting The Mockers On

I’ve done it again. Why do I always put the mockers on really special moments and turn them into painful experiences? Is it just a sign of getting old? Is it the legacy of three years of cancer treatment? Is it because I’m acutely aware of the possible perils of Steven’s future? Is it because I’m just a miserable old git?

We’ve had a perfect weekend. Two very special, bonding moments, inevitably both music related.

For the last 10 weeks, Steven has been glued to a programme on Channel 5 on Friday nights. Each week, they have presented the top 30 best selling songs from each year of the 1990s. Having been born in 1990, the decades represent Steven’s 0 to 10 years and he can still touch the memories of that period in astonishingly fine detail. I’m not with Steven on Fridays, so we’ve watched the programme in our respective placements. When I got to Steven’s on Saturday morning, the support worker told me that Steven had taken himself off to bed early the night before and missed the last episode, 1999.

Later that evening, I found the programme on My5 and we settled down to watch it together. I delight in Steven’s commentary: “The Vengaboys are getting on the Vengabus and going shopping in Liverpool to buy some pepperoni pizzas.” It’s one of those talking heads shows and Steven even gives a commentary to their commentary: “Pete Waterman needs a shave. Faye from Steps doesn’t want to touch your itchy beard.” There’s an in built demand on me during the whole programme. It’s that I remember all the memories Steven is recollecting and understand all his reference points and can join in on the flights of fantasy. So, to the Pete Waterman observation, I can reply: “Yes. H, go and get Pete Waterman’s razor from his bedroom drawer.” Steven loves this recognition. He keeps his razor in his bedroom drawer too. That’s why I said it.

Yesterday I woke up at 6.45 and went for a pee. I could hear Steven chatting to himself in his bedroom. “Had Phats and Small at the Grangewood school disco. Hilary McDermott had her red dress on.” 45 minutes later, I’d showered and breakfasted and went to sort out Steven’s Sunday snacks. He was up and had climbed over the night shift worker who was still snoozing on the Z bed in the living room. Steven had found a channel that were playing the greatest hits of the 1970s. “Dad. Come and watch.” I needed no encouragement. My era. Right up my Street. The three of us were transfixed for the next three hours.

Same sort of programme as the 1999 show, but without the talking heads, Steven launched into a different realm of commentary. Somehow, he has worked out the musical timeline in his head and knows that all the songs were before his time and shifts the focus of his narrative on to me. During “Tie A Yellow Ribbon”, he tells us, “Big boy Mark Neary has gone to freezing cold Southall swimming pool with Bani Verma.” He’s right too. I must have told him that story from 1973 once and he never forgets stories like that.

We both enjoy educating the support workers. “I Feel Love” came on:

Francis: “Who is that?”

Steven: “Donna Summer. Man doing the switches is called Georgio.”

Me; “That synthesizer sound was revolutionary at the time. We thought we’d discovered the future of music.”

Francis: “I’ve heard of her. Very interesting.”

In a similar vein, but slightly more embarrassing, “Heart of Glass” was played:

Steven: “Big boy Mark Neary’s gone all soppy now.”

Francis: “Why have you gone all soppy?”

Me: “Let’s just say that back in 1979, I would have needed some private time whilst watching Debhie Harry.”

Serves me right for taking the Micky out of Steven and his reaction to Kylie doing Can’t Get You Out Of My Head.

It’s pretty obvious that I revel in Steven’s encyclopedic musical knowledge. I’m in awe of how he has constructed a perfectly accurate timeline in his head. During the 1999 programme, they had a commercial break just before they played the top three. I teased him:

Me: “Only 3 more songs, Steve. Who is it going to be?”

Steven: “Eiffel 65, Cliff Richard and Britney Spears.”

Don’t bother to Google it. He was spot on. It would have taken me ages to work that out, but it’s instantly accessible to Steven.

How do I put the mockers on? I got home yesterday about 5pm and tortured myself for the rest of the evening with the single thought:

“Who will share those moments with Steven when I’m no longer around.”

The answer is painfully obvious.

Thank You For The Music

We’ve just completed our Saturday compilation tape and Steven chose an Abba track as the big encore.

20 years ago this week, we went to the Leavers Assembly on Steven’s last day at middle school. Oh man, was it a several hankies occasion. Steven’s class put on quite a barnstorming finale to the rather formal proceedings that led up to it. Connor reprised his Blues Brothers routine from the Christmas play; Lorna stunned us again, just as she did at the Easter disco, with her unique take on Barbie Girl. Each student, metaphorically stepped up to the mike. And then Steven literally did….

His teacher put on one of the less familiar tracks from “Abba – The Album.” To this day, I’ve no idea what the plan was, but Steven just sat on the edge of the stage, smiling coyly to “I’m A Marionette.” Then, all of a sudden, he pressed the “skip” button on the CD player, grabbed the microphone off the headteacher and launched into a word perfect version of “Thank You For The Music.” Cue the tissues.

Twenty years on and that was the song that Steven chose to close today’s tape. As has happened on every other occasion he’s played that song since 2001, he rattled off a thorough commentary:

“Mark Neary cried. Julie Neary cried. Helen Evans (his teacher) cried. John Ayres (his headteacher) cried. Pat Davis (his favourite classroom assistant) cried. Billy Hughes (the caretaker) cried.”

Melancholic me has been stuck in a kaleidoscopic space ever since. A space of innocence. Not just 11 year old Steven’s innocence; my 42 year old’s innocence as well. At that same assembly, Pravir had swayed along to Wet Wet Wet’s signature tune and I’ve been thinking how it was such an innocent love that was all around us. The school never focused on the negatives; so neither did we.

The past fortnight has been awash with reviews. We’ve had the annual care plan review, carried out between me and a new social worker on Zoom. A few days later, she did a Zoom with Steven and the support workers to review the Community DoLS and assess, for the umpteenth time, whether Steven has the capacity to agree to his support plan. On Thursday, whilst Steven was at swimming, my phone rang and it was the community psychiatrist from the learning disability team, wanting to review Steven’s psychological state and medication. I’d completely forgotten. Pretending that I was super prepared, she led me, for half an hour, down that familiar negative cul-de-sac.

Three reviews in a few days and all producing that same old sinking feeling. Actually, it’s worse than that. I end up feeling ashamed and disloyal. I’m only following their line of enquiry, but I feel I let Steven down when all the focus is on things that he can’t do. With the psychiatrist, I had to dive deep into the memory bank to recall the last time we had to deal with “challenging behaviour”, but I could tell that she was glad that I could eventually remember a minor event that happened about 10 months ago. It gave her something to write about. I got into my annual capacity wrestling conversation with the social worker because I believe that Steven has a pretty good grasp on the issues around his support. I always give in because the decision (SN is lacking capacity) has already been made and I don’t think the social worker wants to go before panel and present my alternative view to the senior professionals.

None of it matters anyway. The key matter is that the support package doesn’t change. That’s the measurable outcome of a successful review as far as the Cowley boys go. The fact that Steven is presented as an incapable object is just collateral damage of the brutal process. If they heard Steven apeing Agnetha and singing; “But I have a talent. A wonderful thing,” that would most likely make it into the review report as an example of echolalia.

20 years ago we didn’t have annual reviews. Parents evening and the daily diaries were always positive moments. We hadn’t come under social services’s radar, so didn’t have a social worker and the DoLS scheme hadn’t been invented yet. We’d have dismissed having to defend Steven’s joy of thumbing through a photo album as silly talking.

And then we grew up.

Keeping An Eye Out

Some good news, and then the whinge.

Yesterday, I had the telephone follow up appointment to my May operation. The biopsies of my bladder and prostate were clear. Just like the March biopsies. After the discovery of cancer in my prostate in January and the resulting surgery to remove it, two biopsies in two months have shown no sign of any cancer. That feels great.

Then the consultant went through the options from this point on. Still on the table is the full removal of my bladder, bowel and prostate. I don’t really understand this, especially when the consultant said that we “missed the boat” on doing this back in January. I think we have different understandings of missing the boat because he reassures me that he’s not saying that I’m doomed to the cancer returning with fatal consequences. I’m reminded of my conversation with the Macmillan nurse, the first time that full removal was mentioned and how she explained that it was common practice to offer patients this option. Despite both their reassurances, I struggle to square such a drastic intervention after two clear biopsies.

The consultant knows my view about having everything out, so we quickly move on to the other options. He explains that it is “prudent to keep our eye out.” He’s talking about keeping his eye out, more than mine, and what this entails is going through the whole procedure again in September. Prudent it most definitely is, but the thought of another general anaesthetic, another catheter, another fortnight of blood filled, painful peeing makes my heart sink. And another MRI scan, just prior to the surgery. A darned nuisance, but the only way of really keeping our eye out. If all goes well, and that means three clear biopsies in six months, he will discharge me back to my local hospital for future care.

Then, the other pisser piece of news. I had already told him that I’m due to meet my hernia specialist next week and I want to be at my most assertive in pushing him to fix a date for the surgery. I’m told that I need to hold fire and postpone any hernia surgery until after the September operation. My heart sinks a bit more. It feels like I pressed a pause button back in July 2018 and it’s now going to be at least July 2022 before I can unpause. The consultant doesn’t really get this. He keeps mentioning that I’ve got my corset now as if it has allowed me to return to the life that I once knew. I’m too embarrassed to tell him that I’ve only worn the corset three times since I got it. I still can’t do many of the things that make me, me. I’m scared of how my diminished fitness levels are going to make it harder to recover from the repeated surgeries.

There’s no answer to any of this. It can’t be therapied away. The swings between hope & positivity and grinding disappointment are part of life now. I’ll probably feel quite different in an hour’s time. Yearning for a session in the gym, or a dive into the coldest lido is the new normal and must remain, a yearning.

Last week, I was desperate for a swim. But vanity kicks in too and I couldn’t bear to display my huge encumbrance in a public Pool. So I booked myself into an airport hotel for a night and prayed that their private pool wouldn’t be busy. It wasn’t. A couple were leaving just as I arrived and I had the pool and spa to myself for 45 minutes. It was heavenly. And then I went back to my room and had a long sob as I wrestled with the 20 straps on my corset so that I would look presentable for dinner.

I’m so glad that the biopsy was clear. I’m so glad that my consultant is keeping his eye out. I just need to keep my eye out for the good stuff of life. Because there’s still a lot of it.

Hinges & Curtains

Lovely support workers story: Volumes 168 & 169…..

I was in my flat the other morning, just before I left to go to Steven’s. I went to put something away in one of the kitchen cabinets, when there was the sound of something rather like a gunshot and an object flew out of the cupboard and caught me in the eye. The hinge on the cupboard door had snapped and the eye-catching missile was one of the screws. At that moment, the cab arrived, so I didn’t have the time to fix it and left it shut, propped up against the door of the neighbouring cabinet.

When I got to Steven’s, my eye must have still been watering, because the support worker asked me what on earth I had done to my eye. I told him what happened and he recalled my story of my chair accident from a few months back. My hernia has altered my centre of gravity! A few months ago, I stood on a chair to change a lightbulb and toppled forward, landing in the kitchen sink. Ever since, I’ve been apprehensive about standing on a chair unless I’ve got something to hold on to.

The next day, I had just shown my first client out when the doorbell rang. I thought she must have left something behind. It was Des, the support worker. He had stopped of at Wilkinsons on his way to Steven’s to buy me a new hinge and had come to fix it for me. How cool is that. He even changed the dead lightbulb whilst he was at it. I was bowled over by his kindness.

Yesterday, at Steven’s, I was struck by how much lighter the living room looked. I couldn’t work out why, then noticed, the window had a new set of net curtains hanging. I asked Steven:

“Steve. Have you got some new curtains?”


“Where did they come from?”

“Des Disney got Steven Neary some new curtains on Friday. Curtains was a nice present.”

I was gobsmacked. Not just that Des had taken the time to get some new nets (he probably got them on his journey to Wilkinsons), but also that Steven appreciated the gesture of a “nice present”. He was clearly chuffed as he had a big smile on his face as we discussed them. I had never thought that Steven would see household items as a “nice present”; he never seems particularly interested. Let’s see if he has the same reaction when I get him a new casserole dish for Christmas.

The new support worker arrived yesterday for his first shadowing session. He got it spot on. There were lots of things to learn; jobs to be done, but his instinctive reaction was to get to know Steven. He was interested in him. He watched him. He chatted to him. None of that one page profile nonsense.

I realise how lucky we are to have Des and to have discovered Kingsley. And the rest of the team too. I observed a case in the Court of Protection on Thursday. I’ve written a piece for the Open Justice crew, so I won’t go into the story here. Except to say that the woman at the heart of the case was 82 and lives in a care home in Hillingdon. One of the directions from an earlier hearing was to personalise her room at the care home. 18 months on, that small task still hadn’t been done. She doesn’t have a Des Disney. nobody is interested.

As Neil Crowther would say, it’s all in the framing. My skin crawls when I hear the phrase: ” a piece of work.” The Hillingdon barrister used it every time the judge issued a direction. Personalising the room = a piece of work. Even though Des was at work, I don’t think he would have described hanging the curtains as a piece of work. Normal human gestures get turned on their head and that weird phrase is meant to infer an importance beyond the norm. The irony is that it does the opposite: it reduces everything it touches.

I can’t say how much the stories of the hinge and the net curtains reassure me. I always worry about Steven’s future when I’m no longer around. Those fears have been even more prevalent since I’ve been dealing with cancer. Those fears will never go entirely, but when you’ve got someone who is prepared to go shopping in his own time for something that will make Steven’s life better, you can rest a little easier.

Early Musical Lines Of The Cowley Boys

Steven and I have just finished out Saturday afternoon music compilation tape. Recently we’ve been working through very specific categories. The last three weeks we’ve covered: “Songs with girl’s names”, “Songs with animals” and “Songs about places”. When I asked Steven on Thursday what he wanted this week’s topic to be he replied: “Songs when Mark Neary was a little boy.”

I was toying with the idea of putting this post on Steven’s Massive Radio Station blog, but thought that here would be a better place as it’s about me. I do get so hacked off on social media when parents get slaughtered for “erasing/stealing” their disabled sons and daughter’s voices, so decided to turn that on its head. This is my story (or at least the 1960s part of my story) told in Steven’s words. He is fascinated by stories of me and the family before he arrived in the world. I like how he builds a story to suit himself so that the tale ends up half factual and half a result of Steven’s imagination running riot.

I Chose 8 songs for the tape that Steven is extremely familiar with, and true to form, he carried out a narration all the way through the taping.

Without further ado…..

  1. “Uncle Bob and John went to a pub in Acton for some bitter beer and some smokey bacon crisps.”

(You may remember my Uncle Bob from Lines. Uncle Bob of Sale of the Century and the blue camper van fame. Uncle Bob was very distantly related to John Entwhistle from The Who.)

“Granddad John said that Keith was a massive good drummer.”

2. “Lulu Orange didn’t go to little boy Mark Neary’s school. Lulu Orange went to another school.”

(Old timers may remember that Steven heard the rumour of Lulu and Jason Orange getting down and dirty during the recording of Relight My Fire, so since then has always called her Mrs Orange)

3. “Little boy Mark Neary was doing his Mick Jagger dancing at the school disco with Bani Verma and Natalia Pollard.”

4. “Little boy Mark Neary went to Windsor Castle with Granddad John and Nanny Beryl. Little girl Auntie Jayne wasn’t here yet. Little boy Mark Neary had a Zoom lolly near the swans.”

5. “Little boy Mark Neary was playing football in the park. Little goalkeeper Phillip didn’t like The Easybeats.”

6. “Little boy Mark Neary & Granddad John went swimming at freezing cold Southall swimming pool. Little boy Mark Neary had a Penguin and an ice cream.”

(You can see how Steven’s interest usually veers towards food)

7. “Little boy Mark Neary had his silly head on. He said that Dusty Springfield was Auntie Jean. Auntie Jean doesn’t know Neil Tennant and Chris Lowe.”

(I’m slightly aggrieved that he’s dismissed my 6 year old imagination as me having my silly head on. Dusty does look like Auntie Jean and he’s a fine one to talk as he dines out on his lookalikes stories.)

8. “Little boy Mark Neary pinched Auntie Carol’s Gary Puckett record. Go to your bedroom, Mark Neary. No jam sandwiches for you tonight. Auntie Jayne (she was in the world by now) can eat Mark Neary’s jam sandwich.”

What The Eye Doesn’t See.

Having been immersed in social care services for over 30 years, you get pretty adept in code breaking. Deciphering jargon laden statements to understand the real impact the words will have on your life. You quickly learn that what has not been said is often more pertinent than what has been said. And you become an expert at spotting statements that at first glance sound totally meaningless and learn that several glances later, your first instinct was correct; they were meaningless and don’t require any more of your energy.

“We will be reviewing the measurable outcomes of your care plan” is actually code for “We’ve got to make some cuts, so we’ll pretend that some lifelong eligible needs no longer exist by changing the goalposts around outcomes.”

Beware of phrases like “we are facilitating his/her independence” because that is normally the precursor to several members of your support team getting their P45s.

Most users of services and their families learn this code breaking skill over time. You have to, otherwise you will find yourself repeatedly rinsed.

I’ve been wondering whether the same codish behaviour exists in the NHS too. On Thursday, I had my third operation so far in 2021. It’s been pretty much the same procedure each time: exploration of my bladder and prostate via my manhood, with resectioning of the organs carried out if any cancer was discovered. Thursday’s procedure was identical to the surgery in March, both in process and in measurable outcomes. Each surgeon who has visited my bedside post surgery has said pretty much the same thing and Mr Paranoid Head is left wondering whether there is some code being transmitted that I have so far been unable to crack.

The March summary: “Good news, Mark. We couldn’t see any cancer and are 99% sure that the unusual scan reading is scar tissue from your first surgery.” I was happy with that. 99% sounds like pretty good odds to me, so I allowed myself to feel relieved, and opened the door marked “hopeful.”

Thursday’s summary; “A very successful procedure, Mark. We couldn’t find any cancer. We’ve taken more biopsies to be sure.”

Now, I’m aware that “we couldn’t see any cancer” and “we couldn’t find any cancer” might infer that there might still be some there, hiding away from the surgical eye. I can understand that the consultant might not want to open himself up to speaking in certainties. But what freaks me out is what comes next, and they’ve said the same thing in March and this week:

“Going forward we’ve got three options. We could discharge you and you can contact us if you discover any warning signs in the future. We can continue to keep a close eye on you and offer you regular syscospoies. Or, and most extreme, we could go for full bladder, bowel and prostate removal.”

It’s the last option that sets off my code breaking alarm bells. I can see why that would be an option if they’d found my bladder was riddled with cancer. But it seems a very dramatic card to lay on the table when “we couldn’t find any cancer.” My relief instantly evaporates and is replaced with nagging, “Is there something they’re not telling me?” To put it mildly, it would be a right bummer to plump for the full removal job, have to learn how to collect all your waste in a bag, only to find that they couldn’t find any cancer because there was no cancer there to find. Do people really opt for such drastic measures just to be on the safe side?

I said all this to the surgeon yesterday and he just smiled and said that it was important that I was aware of all available options and outcomes for the future. If there is no code to break, then perhaps I just have to believe him. Perhaps this is what living with cancer is all about.

As I start my third convalescence of 2021, I won’t be visiting Steven this weekend. I’ve got a nice biography of Joan Sims, a new The Kinks greatest hits CD, a large Bakewell tart to keep me company. In an ideal world, I might come out the other side, having decided that there is no code to break.

Three Smiles & A Rolo

Steven makes a noise. I wish I could find the right adjective to describe it. The nearest I can get to is to liken it to a deep, purring sound. I know what it signifies though. It is the sound of complete contentment. It’s my favourite noise in the whole world.

The purr rang out several times over this Easter weekend. Yesterday Steven was watching an Erasure video on his own. When Andy and Vince got on to their version of Everyone’s Got To Learn Sometime, the purr travelled from the living room down to the kitchen where I was cleaning the grill pan. I approached that dirty job with renewed heart.

The long weekend has also thrown up three delightful smile moments. Melancholic fool that I am, I often find myself ruining a smile moment with thoughts of “what might have been.”

For example, yesterday, with the sun out, I suggested to Steven that he move from sweatshirts to t shirts. He chose a brown, florally pattern one that I’d recently got from Premier Man. The support worker was dead impressed. “Wow. What a great shirt, Steve. You look very handsome.” Steven broke into a huge smile. He has sufficient vanity to be chuffed by a compliment about his appearance. I couldn’t let the compliment rest there. My mind immediately went back to 2010 and all those times I visited Steven and found him in someone else’s clothes, several sizes too small. The social worker dismissed my concerns with, “That’s your issue, Mark. Steven isn’t bothered by clothes.” He was. He is.

Second smile. We were doing our compilation tape on Saturday afternoon. Amongst Steven’s birthday CDs was one of Jason Donovan singing his favourite songs of the 1980s. The track Steven chose for the tape was Jason’s take on “I Just Died In Your Arms Tonight.” We’ve got a long standing joke around that song. In a 1999 episode of Coronation Street, Steve McDonald performed the song in the Rovers in the style of the pub singer. Whenever Steven hears the tune, he demands, “Dad. Put Steve McDonald’s voice in your mouth” and I do my impression. It’s a maximum purr moment. I love it, but I ruin the moment by the thought, who will do the Steve McDonald impersonation when I’m no longer around? (I’ve been having those thoughts a lot over the last few months).

The third smile? ITV3 have devoted the entire Easter weekend to the Carry On films. Yesterday, we settled down to watch Carry On Doctor. It’s got that scene where Barbara Windsor goes to sunbathe on the roof and Jim Dale mistakenly thinks she’s about to throw herself off and goes to rescue her. He gets stuck on the roof and needs rescuing by the fire brigade. It’s always been Steven’s favourite scene and he likes making jokes about “rooftop dramas.” Yesterday’s joke was, “Kenneth Williams, you can’t take your big white book (that’s a reference to Kenny’s published diaries that sit on my bookshelf) up on the roof. Fireman might make your book all Wet with his water hose.” Steven thinks his own jokes are very funny and skips off to the kitchen, laughing his head off. I’m getting better. I didn’t hose that moment down with my own melancholy.

One final Easter moment. Steven had two eggs: A Celebrations egg and a Rolo one. We could hear Steven ripping open both boxes in the kitchen and Francis called out, “Are you going to share your egg with me and Dad?”

We were each presented with a solitary Rolo.

62 Years: My Musical Soundtrack.

The day before I went into hospital was my 62nd birthday. As I waited to be discharged on Friday morning, I revisited my list of my favourite songs from each year of my life.

Here it is. My apologies, but I found 2012 and 2019 to be crap years, so there are two gaping holes in this bonanza.





























































Two Minds

I’m just waiting for Steven to finish his morning shower.

Do you remember Fred Talbot, the weatherman on the Richard & Judy show? He used to deliver his forecast from a floating cut out of the United Kingdom, in the middle of the canal. When he was on the main float of England/Scotland and Wales, Fred looked safe. It was safe and sturdy enough to hold both him and his cameraman. Then he would jump across to Ireland and the crowd would go “Woah”, excitedly hoping he would fall in. On the return leap to England, the crowd’s “Woah” was more muted, expressing its disappointment that Fred had survived another forecast intact.

My mind feels a bit like those two floats at the moment. One is safe and resilient; the other feels wobbly and carries the anxiety that I could fall off quite easily into the Manchester Ship Canal.

I’ll deal with Ireland first. “Woah”.

I’ve got another operation of Thursday. This will be the fourth surgery in just over two years. I won’t know until I arrive at the hospital on Thursday morning exactly what the operation will entail. I’ve had two scans in the past week, but the results won’t be in until the day before the surgery. There’s a very slim chance I may not need the surgery at all. I don’t really believe that though. It will be either more resectioning of one or more organs; or at worse, complete removal of one or more of them. I don’t even know how long I will have to stay in. But, unlike the operation in January, I’m not expecting to be home in time for tea on Thursday evening.

I’ve been at Steven’s since Thursday morning. It was his 31st birthday on Friday. I would have stayed the four days even if the operation wasn’t happening, but being here certainly represents the sturdy, safe area of the UK float. He’s been working his way through all his new VHS tapes and DVDs and has even tolerated me sitting with him to watch some of them. Last night we watched the Erasure Live In Concert DVD . What an underrated group they were. It was filmed back in 2003, shortly after they released their cover versions album, so it includes their versions of ‘You’ve Lost That Loving Feeling” and ‘Everyone’s Got To Learn Sometime”. Steven is familiar with these from the CD and I love the purring sound he makes when he’s reached optimum contentment in his viewing. Ably supported by the stout vocals of the support workers, we’ve sang and danced our way through the last three days and it has been wonderful.

I can enjoy Erasure, but there are some thoughts that I can’t erase and before I know it, I’ve boinged across to Ireland. “Supposing this will be the last birthday we spend together”, is the darkest of the thoughts. I nip off to my room. Have a little cry and a chocolate from Steven’s birthday selection pack and the thought soon passes. But I know it’s not a fanciful, overly pessimistic thought. Fortunately, Steven lives almost entirely in the present tense and he’ll be knocking on my door, demanding, “Dad. It’s A Little Respect. Come and sing.” So, I go and sing and everything is alright again.

We did our usual birthday compilation tape and one song that has to be included every year is ‘Dub Be Good To Me’ by Beats International. That song was number one the day that “Steven Neary came into the world.” Thirty One years ago and whilst we were listening to Norman Cook’s post Housemartins’ adventure, I realised that I was 31 the day that Steven Neary first came into the world. The day before my operation I will be 62. Half my lifetime (so far) has been marked by annually revisiting that popular cover version from 1990. That thought makes me feel like I’m straddling both islands on the canal. It’s purringly reassuring, but at the same time, where has all the bloody time gone!

I’m going back home tonight and for the next three days, apart from my pre-op covid test, have nothing planned. I’ve treated myself to a few DVDs and books for my birthday, so I might sneekily unwrap them a couple of days early and just flop on the sofa. And hope that I don’t spend too much time on the smaller island.

In the meantime, there’s the final part of the birthday marathon to enjoy. Steven’s dressed now and already prompting me that the next DVD cab off the rank is The Beautiful South’s concert on the Jools Holland show.

As they say, You Keep It All In.