is Chemo like Speed?

The biggest thing I initially seem to get from the chemo is the energy burst before the fatigue I fully expect at the weekend. Well, it is only Tuesday evening.

Last time my optimism soared and I wasn't sure if it was the chemo or the flushes. On one level I was happy that knowing how bad some people found the chemo it wasn't so intense for me. The fact I only received one dose alongside the radiotherapy at weeks one and five largely explains it. I'm getting a nibble compared to what many people get which is 'a full main menu table for 8, with extra garlic bread'.

It still doesn't get me away from this hyper reaction to writing songs and also the backdrop to the songs. It's also 2.20am and having had a Weetabix at 1.15am I'm still waiting for the mania to subside.

I had a song called, "This will never be", it's genesis was in the post 1979 election, the SDP and me sitting on the SRC in 1981 when the university management said they were suggesting closing the library 2 twice a week. I enquired closing or reducing the hours by 8 seeking the nonsense clarification of the agenda item. "Ah yes, just the evenings 6-10pm, but it's just the start."

We debated this at the meeting and I didn't appreciate how many people, not just had a party line, but followed it to. I'm not sure if I was singing about them, the SDP, Labour and the Tories or just me again observing my own befuddlement. After 4 hours of debate in the union dining hall where I had asked how many used it and was greeted with "lots",  but that's not the principle. I then suggested we bite their hand off at 2 evenings and ask for no more closures for three years until September 1984. I was studying economics and it wasn't a great suprise that cash was tightening so cooperate in good faith, minimise it, don't fight it, battles can wait. New academic years always seemed less confrontational than midway through when students are starting to think about the library as the exams draw closer. I found myself completely out of on a limb. The university came back and said we'll close it 4 nights then. This led to ridiculous protests after we'd been consulted it felt like we had let the students down. I went to the library in the evening a lot over the course of that period. It was empty. It was a huge building with heating bills to match. I was disgusted with politics in my first real debate. How could these student politicians so overplay a hand they didn't hold. Poker from Vegas wasn't on the TV yet I guess. I thought them a bunch of privileged entitled fools, I didn't realise I was the fool. They could all afford to buy the books. I couldn't take the meetings seriously after that. 

When I had looked at the chessboard and seen how the pieces could move I arrived at a conclusion which I would back. If I couldn't see it, then I'd not back anything but just keep listening until the pieces fell into place for me. So largely I was very slow on the uptake but this one just seemed so obvious. Afterwards in comments from constituents I would hear everything from "but we're the elite, we need to be able to choose when we learn", "We're the future of this country, we need to be looked after"  and "we need access provided to all the tools we might need", through to "they should just close it 7 nights a week. Most students are either working or partying in the evening. They've already taken any books out during the day. They could spend the money on so many other things." Ah yes, my favourite, opportunity costs. They need only have expanded bursary provision for needy students by 10% of what they saved and they'd have got 7 evenings closed. They only waited a short period anyway. This deal lasted as long as my song. The lyrics of which I need to type again to remind me what 18 years old wrote in 1981.

I see you sitting there surround by confusion

All because you can't find a simple solution 

I look to my left and now I'm looking to my right

Oh the problem is so simple but you'll never see the light....

Because

This will never be...woahh oh oh oh

This will never be.....

Oh why can't you just see

This imperfect world will always be

Yes I'm watching you

As you run out time

With every tick of the clock

With every chime

And these cheesy sentiments roll on for ever in a classic 2:55 life support single that "will never be."

Ok time for bed again but I do think I made these tiny pieces of learning, then broadcast them over my life. Listening to the reactions of people to the library closures taught me a lot. I always finished my conversation with ...."and how often do you use it and what times..." To which most answered never. My constituents were a hall of residence on the edge of town. Not likely to lug a book far not wait too long to get home in the evenings. Demographics dictate behaviour not just opening hours.

"Sometimes if I'm in the quad I'll pop in but the books you want are always out so unless you run out the lecture after the Prof has suggested it you're wasting your time."

Many other observations, including my own walking around the library, left me thinking we were given this fantastic facility but nobody used it. The town library or even any public library was 10 times busier. We had a huge 4 story library, it looked like our shipyards, strelworks and mines would in due course. The end of another age.

"We're the future of this country. Our generation needs to be nurtured."

I suppose we were arrogant teenagers away from home but if you ask me it sounds like my only response should've been, you entitled prat. Instead he's my friend to this day. He was led to believe he was in the top couple of percent of society, had come through and English private school system which taught him what he learned. University was where he learnt what he was taught. For him that hopefully included the library although I don't think he ventured in much, he knew it should be an option. I sang back it's the kidney machines that pay for rockets and guns, paraphrasing the sinking of the belgrano, the Falklands and the library closures and no more Bilbo baggins. You could do that with songs, especially Paul Weller and some of those rat a tat tat lyrics.

I would funnily enough start to use the library but that was just to try and teach myself about everyone else's subjects.

After bleaching the sink I found myself in bed at 3am and put the golf podcast on that fixes my sleep. It worked. I woke at 7 to the same scratchy bleedy throat and time for my next Weetabix.

The label on my tablets is superb. I screwed these up in week one when I took one twice a day instead of two. This time round they've told me how many and what time of day. I took them lunch and dinner, they said they play havoc with sleep so it's morning and lunch. I explained my prostate already does that added to the drinking 4 pints of water during the night.

I was reminded of Jim MacKinnon's Dad when the tidying of my sock led me to the boxer short drawer. This wonderful folly that we bought 30 years ago stands lonely, like a triangle looking for some upside down ones to sit alongside, with drawer opening upside down, to make them right way up, it's a shape that appealed so much but it's a folly. The drawers depth so deep but the height so thin. 

I went to rolling things when packing for the Camino one year and that's when evoked the story about Pete McKinnon's son Jim telling me about his Dad, ironing and dishcloths. This beautiful arc into the world of dementia has many parallels for me from studying psychology to witnessing wonderful and beautiful behavioural change in others.

First I must tell a brief story of me returning from St Andrews for a drunken night in Edinburgh. Pete and Kitty were over from Michigan's finest university where Pete was a professor. They had met mum and dad in1962, remaining friends since. Pete was Glaswegian so came over to visit his mum, but to the story.

Mum said to me before I went out you're in the front room as I've put Pete and Kitty in your room. I went out got drunk, came out the toilet, got into bed and a big hairy arm rubbed my chest and booked in my ear, "Alan, I think your in the wrong room?!"

To paraphrase Ray Davies, "well I looked at him and he looked at me" and I said, thank the stars it's you and not your wife... Kitty"

In the morning I'd clearly forgotten all about it and Pete enquired how I slept. I said like a baby, I always do. "Tuesday a few on?", yes I always do, "find your bed alright?" 

'Aha, I see where your going with this, oops yes, sorry I forgot about that, better get to work'. Off I saddled wondering how I'd found myself in bed with them and yes, I would be naked and no don't think any more.

It's a lovely thought that we should then be rejoined in the world of folding, rolling and ironing. To be fair, since I stopped drinking the Alzheimer's has slowed up. I had a wee spell pre COVID where I was testing the relationship between my mental decline and alcoholic Alzheimer's. It clearly was too much time on my hands and I foolishly took on the job of captain at the golf club. That became a 24/7 obsession to square a circle that was no longer a square. We had become asset rich but revenue poor. The honest endeavours only 15 years earlier had seen us borrow a £1m on best expectations of annual revenue. They were never matched and once one council after another deviated then ripped up the 2002-2004-2029 business case we were a failing business on all levels. 

Without going into too much detail out core member revenue was due in the original business case, to be £1000-£1200 p.a in 2017, was under £700 as the subscriptions had been frozen for 9 years.

There had been no money for rises so the green keeper team operated old decrepit machinery on salary's that had been double the minimum wage in 2009 but by 2018 had to increase or be forced up by the minimum wage.

The demographic had completely changed around Golf from my generation as a golfer and the city of Edinburgh like the UK club golfing world, was asleep at the wheel. The Lothian Golf association had a dwindling number of members at over half if not three quarters of the clubs and had turned Golf into a discount sport. Golf had hit the end of the baby boomers and the start of globalisation. House prices in the city and commuting has encouraged magnificent courses on the edge of town to be considered in Edinburgh because the Lothians was Edinburgh.

The collapse of cash saw many courses declined and the best approach was to get a new team in to replace the team that you had successfully undermined since the banking crisis.

Had it not been for 0% - 0.75% interest rates many more clubs would have gone under but as it was a few good clubs disappeared for ever.

With so much negativity there was still reasons to be cheerful. There were lots of changing dynamics in the industry and Edinburgh being home of the financial world meant we had a huge incoming population from other cities. The trick was to let them join. 

I was busy trying to find out why we didn't have members knocking down our door as we have the premier location and as I ran all my models on membership I'd receive email and phone enquiries all evening until 10pm asking about membership. I'd quite often have new members by 9pm.

I quickly revamped the form for enquiry to grab 6 small bits of information and before we knew it we had 100 new members who had moved to Edinburgh for a variety of reasons by the beginning of June it was closing in on 150, from Aberdeenshire, Ayrshire, returning from London, moving back into the southside family grown up now, many great reasons but largely migration or old members returning. There was also what I called the gym membership members. We had an under 31 scheme which meant a 24 year old paid roughly half price. They joined during the masters in April full of good intentions and a year later when you asked again for the subscription they said they never played, so left.

It was sadly the case on the revolving door as many members moved house and with no joining fee, moved to a new and often better for them club on the burgeoning Golf Course Road East. From Prestonpans to Dunbar the new developments were giving young families a 4 bedroom house for a two bedroom Edinburgh flat, schools, doctors and fresh air, what's not to like. Add in a few ailments, members untimely deaths and we had as many joining as we did leaving if we only brought 100 in. We needed the 150. 

The greatest thing I realised as well was the future of golf clubs relied on the over 55+s. They had the disposable income and were increasingly likely to stay for 20+ years having finally settled. I'd always been a fan of a broad base but the young needs to have a passion for golf, the older need the finances. It was quite simple economics and so we moved to encourage more older members and also country members who wanted a course in the Scotland and the capital had one in the centre.

The long game was simple. If we brought in 10 partners of members at £800 a year it was likely to be worth £80,000 over 10 years. If we brought in 80 under 31s we would need more people on the office, more discs and cards, we would get £32000 that year but costs would be higher. Processing 80 new members not 10 meant we pay in processing time, as well as all the other fixes costs but most importantly there are 80 free spaces on a Saturday or Sunday morning when these people want to golf. You can squeeze 10 new members in paying full fare but not 80 on a discount. The kids worked out the booking system or worked out it didn't add up as the weren't playing.

Our turnover statistics post 2005 (last year of the entrance fee) were appalling. We had taken in large numbers during some years where we had membership drives but after only 3-6 years there were only 7 left from that cohort of 70. 

At 16 members still active who joined in 2005, it was the start performer in our CLASS OF PGC. I look around the clubhouse and starting sheets and am proud to see that so many of the 2017 & 2018 cohort are still members. We tried harder through assimilation but the attrition was probably still 80% over 7 years. I'd love to run those numbers today.

My point, as I started off it was Pete, me and fold towels. I was so invested in my captain's role that I wasn't able to drink until my shift ended which often meant it was 10pm on the way home. This novelty didn't last forever only until I went on Camino after doing 6 weeks, 7 days a week and morning until night. We ate every day in the clubhouse and it cost me a fortune. I never grudged a penny while we moved in the right direction but it was slow.

My memory or as I classed them, Al's Alzheimer's issues were definitely less frequently noticed and when I did the test it was a definite no from the docs. I just knew I wasn't rainman anymore. The memory that automatically recorded every shot on the course from 1977 to 2017, was no longer there.

When I met up with Jim on one of his transatlantic trips to see his Glasgow Granny, he was doing a masters in Glasgow in the 80's when we'd routinely take in a few pints in either city or even Powderhall and the magnificent dog track, I digress, this was around 2017 and we discussed the behaviour change in his dad and this huge contentment in ironing and folding dishcloths. I said I likened dementia to a beautiful Buddhist calm. I always felt I couldn't turn the noise down and I remembered John Frame telling me if you wanted to control a cow you put it in a big field. I liked that and I liked dementia for the calming effects it had. Yes, we all hear about the noisy sufferers they make more stories than quiet contentment. I played cards with my mum for 15-20 years. She was contented, no doubt about it. She never threw a hand and never needed a card picked, she could choose a suit and always had a trump card left. I knew it was ingrained in her from a long time ago but it was amazing to witness how ingrained. In years to come we'll discover what drives the brain function ls that survive the collosal collapse when the atrophy of the brain commences. We know our learning is pretty much switched off by yourself at an early age. We have to invent triggers to train and learn new things in our 20's and by the time we're in our 30's we have our regime and won't be shifted. There is something in some people that ensures the enquiring mind does develop. I'm not sure if changes to circumstances are big or little drivers, but I know my golf swing improved for having the feeding tube inserted. I had to just hit it 150 yards straight. This meant no laborious lunges and a much more relaxed posture. I'd been advised by our pro Scott, quite a few times, in many different ways, no he knows, just tell Al he has a feeding tube.

I told Davie how to get out of bunkers once. Imagine Ben your 7 year old son is catching the ball at the top of the bunker. Wow, that slowed it down and the strike was pure, he nearly holed it. That season was the best I saw Davie out of bunkers. Cost me a fortune every time we played.

Wow! I feel like I was in Laredo doing Oktoberfest! 

My body couldn't do 30km a day

It couldn't tuck one of those bad boys away

Even Boquerones on a tiny tray

When all I eat is shredded hay

Seem a step too far....today

Yes I properly got mugged by the chemotherapy. Then the radio therapy completely dried up my throat and it was agony. This day was always coming so was the morphine sleep was the only answer and now it's six thirty in the morning and I feel a bit better. 

The chemotherapy is so toxic they have to give you 10 times the IP fluid to flush out of you which means you put a stone on and half of that stone left the building and I am back down to 16 stone. 

The hard part for me is that you cannot gauge how much you are retaining so you try to eat but they comfort from the fact you are still heavy. By Saturday morning I'll know I got my calculations wrong when my weight says I am 15/4 or 15/2.

The important thing is to keep a mixture going in and try and ensure you take 2000-3000 calories. In my case it's a shake with Weetabix at least twice a day and if Jackie has made a pot of soup I need half of it drunk each day. If you don't the system shuts down. The gears clunky, the engine stalls, and the petrol however small can't get to the engine because the pipes are all clogged. That goldf swing, forget it, you'll be lucky enough to have the energy to hold onto a Tarzan swing.

Yesterday after sleeping through radiotherapy and my flush, I walked down to Stockbridge got on the bus and was like a wee old drunk in the corner.

Hiccups, ironically my old gossip column here at Deadbeat, would reliably reverberate every 17 seconds for about 6 seconds then leave me alone, for about 17 seconds.....Camino Can'cerre is so like the Camino Norte. 

We drink different things, have different Vista's but the sleeps are very comparable.

Comfortable has many of the same letters as comparable but trust me they are different. If you have a different native tongue then please don't confuse them, although if you have any Latin about you it's probably easy to translate anyway. I'm not linguist but I know a few good ones. If we strip away the Com, and the able, we are left with eather fort or par.

This seems down my street. A fort suggests strength, safety security, and when playing a musical instrument it's definitely strong in my head. 

Par on the other hand is golfing nuance I've grown up with, which has slipped into the health game with above and below par meaning how well you might feel. Ironically below par is good on a golf course but just normal after chemo. You can't really leave the western and say I felt like I just went birdie, eagle, eagle, birdie and I'm 6 below par. It might be how you feel but it's not how a golfer would instantly feel your pain. These are words I never heard Walid mention leaving the western or the golf course. My favourite memories of Walid include #7 & #8, both at the 5th hole. Somebody shouted "Fire" so I took a look then ducked while Walid folded himself under me. The ball smacked me in the ribs and he said that was close. I laughed as I said well it wasn't getting through me was it. 

He then proceeded to the 5th tee, pegged it up, wiggle waggle, waggle wiggle, swish, swish all the food parts of a 23 handicappers swing. The rehearsal, the practice swing, the moment when you know, the club knows and the ball knows what happens next. Today's the pro day so you get to play "beat the pro". Another swish, then an exchange of £20 for a chance to double your money if you hit the green.

Another swish, another waggle, bum sticks out further, is this the back swing, oh yes it is, is this the real swing, it looks like the practice swing and look at the ball. It's flying, it's in the air, looks at the finish he's standing, admiring, he's laughing it's on the green. Gavin Cook is crying, that was £20 in the bank only 17 seconds ago. What a memory to have. The laughing never stopped for the rest of the day. Every normal wiggle, waggle, swish, bum out resulted in a top, a slice, a chunk and they were the good ones. Great company always relished, and we sank a few putts and pints too. That night I was constantly reminded we could've won it if I hadn't 4 putted the 16th. In my defence I had nearly driven the green and walked off with a 5. The others got 6's and it was my fault. Ha ha, those jokes still have me biting.

2011 was a pivotal year for me and largely because of Walid. His journey had me walking over to the western to see him and also the famous time harry and I went to his house I mentioned early in the blog. I met Walid much later than most of his pals and his death had a profound effect on me as I looked at his children and I looked at Caitlin. I looked in the mirror and all of those around me. I had still thought I'd go back to work but when we took that picture of Walid on the Camino to Santiago in 2011 it was a moment that really meant something. Here was a guy who packed a lot of living into his life and brought a lot of joy. I think he probably knew about mortality too and when I was waiting on my diagnosis I had no interest in sharing the process. There are only two letters that change the word TREATABLE, but they are the cruelest with cancer. If I had received the UN TREATABLE diagnosis then so be it and I would've been very grateful that I/we chose not to go back to work in 2011. As it was I drew huge comfort from knowing with treatment it was a reasonable expectation that I'd make a full recovery.

What I never expected was Jackie's brother Graham and John Melon to receive untreatable diagnosis and follow a sad and well trodden path to the hospice and family farewells. As 2013 drew to a close my head has finally escaped the workspace and found a world out there where people really do live and die. We attended more funerals, played more golf and took more holidays.

So we did a bit of living and had more holidays where we weren't rushing home for work. We saw more of Spain than "the pellegrino puts pissed head on pillow then walks out of town for another year", version. Jackie and I had a great trip where we stayed in the Paradores in Santo Domingo de la Calzada and saw where the chicken is kept in the Cathedral keep. Another time in Burgos we bought a wonderful wooden sword and shield for the nephew to guard his family home.

There were more family holidays, a thing I'd always grabbed a week of or just missed so the NYC spending money could be doubled. Let's face it, me eating and drinking in NYC it's a waste when i have so many better cheaper options. Jackie and Caitlin loved it. Like everyone they have their NYC like tourists do. We see it in Edinburgh all the time, me in particular as I go through the centre daily. Our MOMA, their MOMA, different but still not Gernika. Jackie's birthday in Madrid was another classic. Although the suite for 3 nights was more than a tad ostentatious by my standards. We saw Bilbao at its best and I'm well over 30 trips to Santander and Burgos now. Jackie has her favourite restaurants. It feels like there is life after work.

What I've loved about the Camino is how many doors it's opened to walking in general. Our car has done10,000 miles since COVID finished. That means we do 3000 a year. We moved here nearly 10 years ago and that's when I got rid of the 2nd car. It only did 600 miles a year and cost £1 a mile at the time all in. Petrol, tax, insurance and MOT.

Like most things with me, externally the grey car looked a bit of a mess. It had yard long weeds growing out of the doors after a month in the golf course car park in 2013. By 2014 when we were moving here, it became my garage, or overspill space.  When we moved to the flat I tried to hire a garage just for additional space so the car had a few boxes, tapes, records, fanzines,  guitars I wanted to keep for no great reason. Then someone broke a window and that was that. There was a demo from the Shamen that might have been worth a few bob, a few other things but most people wanting that stuff wouldn't be breaking into a car on blackford avenue and I had no cash to offer. Instead I returned from Arran to see the door open on the car and the boxes on the pavement. I wondered if it had just happened or was earlier in the week. The weather provided the super sleuthing as it was wet and apparently, the rain stopped 2 days ago. I lumped it back into the car and decided today was a good day to stop hoarding childhood treasures. A day I regret every day, ha ha.

Well there's some good nonsense getting me through the day 

Just as I start happily to head down hiccup way.

A glass of water, cup of tea or any liquid potion

Does set my chemo tummy, turning into motion 

Just like a frail old washing machine that never seems to spin

The dead cat bounce reappears when you try to get back in 

Enough, it's now Saturday morning and I'm exhausted from the process. I've had my Thursday and Friday flushes and I've not interest in eating or even force feeding. I managed to get two cups of soup down me but the mouth is so irritating now even peaches and prunes are no longer benign. I think the frustration is you can't taste anything but you do get the nippy pain of the cracked palate, throat and tongue. Seems a bit unfair really and certainly a disincentive to eating.

The shakes can counteract the lack of food to a degree but then you have to manage the laxative. All of which was small beer as two proper patients exchanged their stories in ward 1. 

One was having major side affects from their treatment and the other one responded. All matter of fact, both just wanting to squeeze another Christmas out and hoping the treatment would do that. You can't really say much to that, just applaud, which I didn't.

I chewed on something like the thoughts. Their family and friends, the journey and just their doing all you can do which is get on with it. Let every day have a bit more meaning, bring a kinder focus to your existence. Don't let the world bombard you with what you should or shouldn't do, you know what you should or shouldn't do by this age and trust your intuition. It's unlikely to change so you might as well give yourself a break.

It's Saturday morning and I'm going to give myself a break. Time for sleep again, it's passed 6:30am.