Fresh Air, golf and pints de L'eau - all my brain and body needs..... week 3 begins

So week 3 is upon us. I say week 3 but as with Marathon runner Scottie it's now week 23 as we include all our preparation in our Sex n drugs n Sausage rolls world as Ian Dury famously sang.

Somehow week 23 of 29 seems like I have covered more miles. I haven't, in fact, unlike Scottie I haven't even run one mile for at least 20 years. Most people who remember me from footballing days will add they never saw it then either.

In my latter years as the fat sweeper I would walk through the game. Tell the 5-a-side kids to stay in the attacking half while we played the coat hanger system of 1-1-3. A lack of fitness improved my vision. To this day I wish I'd learned everything from age 36-46 when I was 6. At that age you think it's about running around whereas at 46 it's about pass and roll, read and stroll. When I put it into a song I knew it was time to retire.

There are so many of those phrases that wee dafties never hear. They are running around smashing into things and it's hard to slow down. There's only one gear and it's AFA, as fast as. In the case of our pal Graham growing up, AFAF, nobody could catch Graham. Over 2 yards, 20 or 200, he was electric, when electric meant fast.

Electric since got rebranded as being slow but is now on a rebrand mission with the advertising gods as being fast again. Anyone who, like my pal Simon, has ever been plugged in to the floodlights at the school playing fields knows how fast electricity is. Ask Simon or look at the skin grafts on his arms. It was pretty quick on lighting him up.

He's pretty quick again at lighting up when on the Camino, usually when he draws breath at the top of the hill waiting for the chasing pack, or at the start of a long downhill section where he knows his lungs can have a rest. I feel no blog about the Cancer Camino should skip the fag breaks. No longer advertising their products on the TV, or able to sponsor the Embassy world snooker championship these companies continue to peddle their wares worldwide and if you came here looking for investment advice look no further than the tobacco stocks. Their job is to get rich and they clearly don't have any morals. I remember applying the same technique to Caitlin paying through the nose to Unite for student accommodation. I bought their shares at £2 and sold them when she graduated.

They had charged her about £30,000 and the share price had risen to £8. Job done, I sold my 5000 shares. While it clearly might be confusing ethically I prefer to think of it as counter balance karma. I can't beat them so I'll temporarily join them. It didn't even stick in the craw. It's the corruption in capitalism that makes it so flawed and like most of the political systems it's the people who ultimately make or break them. Tobacco companies don't care about cancer, like most multinationals they just want to count cash. "The bigger the pile the broader the smile", that should be my headline, I like that. Greedy bastards. If I could do one thing it would be to say to the UN it would be, "we don't think think the cancer companies care about cancer as much as the oil companies care about the planet, discuss".

Obviously it's a bit loaded as both only care about the pile of cash. As the new song in my head goes....

"The bigger the pile

The broader......

The smile"

I'm lying on the table 

Radiotherapy in my head

There's the smell of burning skin

Another cancer cell is dead 

The bigger the pile

The broader.....

....The smile

How can you let claustrophobia into your head when this is going on. Let's hear it for the radiotherapy team today. 

On drums tapping the tabs we have.....

On Lead with the light show

Look at the cancer care. The people are phenomenal and everywhere you go there's a lovely smile because everyone believes in doing good shit, it's positive, it makes your day go better and a bucketful of humour is so much better than a bucket of shite. 

A woman walks into a bar with a bucket full of humour, "stage is over there" says the owner.... no that's not good enough, I need a better line, "thanks" she says as she reaches into her bucket, "I see your last act died on stage, do you want to clean him up before I start"..... well it's improving.....but I've never written a good joke and I've also never heard the punchline to a woman walks into a bar with a bucket of shite but I guess it would be a shite joke if I told it.

We need to remind ourselves of our binary choice to seek humour or not and this is why I am so excited by my daily visits to the Western. There's such an energy and vibrancy among everyone that seems heightened by their circumstances and I'm happy to join the club. I'd be happier to lose the ulcers but it's part of the journey.

I never thought I'd take to a feeding tube but I lovingly give it the daily clean, turn and flush. Today I even tried to use it as a feed. All good 20 mins saw 50ml move through. I drank the other 150 and I'm 2k closer my 8000 calories a day.

I feel like Caitlin when she got her yamagotchi or whatever that thing that needed shaking etc was, every moment I have together with my tube. It's like having a dog that doesn't smell, yap or shed hair. It's my little hamster that gets one minute of affection daily. It the tortoise that I kept in the shed at the side of the house in America. Oh, actually it's not. I found a tortoise once and his it there and gave it lettuce. The next day I forgot about it and two weeks later I went to see how my new pet was. It was stationary and I don't mean pens or paper. It was the dead parrot sketch before the dead parrot sketch had been on TV. It was, however, not moving fast or slow, it was dead. I have scoured my diary from the our time outside Washington DC and no mention of the tortoise. I think like any self respecting 10 year old, I ran away, pointing probably at Gordon for such a cruel act. Later in an act designed to create the shed and said tortoise, he would be seen burning spiders in a tree with the aerosol flame thrower trick. I felt pretty good when the tree went on fire and the evidence of my tortoise torture was burnt along with the side of the house. I beat the fire brigade at putting out the fire. 

Being a child in the 70's you learnt loads about stuff like that as we still had more children than adults. Whilst adults made the rules there weren't enough of them to police them. In some ways I learnt more about fire from watching the flames above where the spiders were being burned and when I saw the tree was on fire went for the big hose we had in our huge four acres country house back garden. Putting it out made me want to be a fireman for another 8 or 9 seconds but it did teach me how quick it went up in mid August Maryland. 20 years later plumber Gillie, was having a diabetic hypo in my living room while trying to fix a problem with our radiator. Using a welding blow torch he was hoping the over sized nut would save him going to the van. It did but I had to ask are you meaning to set the wallpaper alight as the flames locked the ceiling. "Oh Shit! Have you got any chocolate" he shouted as he padded the flames out. A couple of fun size sadly was all I had as he ran to his van for emergency tin of coke. Note to all, a full fat tin of coke is a welcome gift to many a diabetic about to pass out. Always keep one in your cupboard.

I digress, where was I, before I became an expert on starting forest fires, oh yes, tubes and body piercings.

I've never had a piercing, not even an earring. I think it was cost rather than fashion. If I'd been given one I'm sure I would've pierced an ear or a nose or whatever. 

The tube was my first piercing and I guess it's like your first tattoo. It's such a novelty that it deserves a bit more consideration. It like my first football strip or first pair of boots, not that I mention them much these days, handmedoons are like that.

So my first piercing and also my first scar as I'll have a wonderful wound that looks like a bullet hole in January when they finally collect their gear. I took the tube out on HP over 6 monthly installments, knowing full well they'd reclaim it if I stopped the payments early. 

My quiet plan is to head of to Almenucar for 6 weeks. It's just along from Málaga towards Almeria and will be a beautiful place to stroll the beachfront. Jackie will enjoy the heat as well. There are so many places in the town that have wonderful tapas and fabulous food. The town is clearly jumping in summer but in winter it's quiet and perfect for us, while I recover from the single assassins bullet to my belly.

With any luck we'll sneak friends and family out for a bit and use it as a base for the odd day out into the mountains.

Until then, it's back to business and the bloods today.

I forgot it's balloon change Monday as well so I had my first changing of the water in my feeding rig. It's a clever thing as I've mentioned before how they hold it in place in your stomach with a balloon full of 5ml of water. Nature's Rawl plugs are water balloons. It was as easy as described. Twist the empty tube to your right to lock it then hold it while gravity or the vacuum gently sucks the water up the empty syringe. Once it stops you can then draw a little more and stop. Twist left to release and then take new syringe that you filled earlier and keeping your finger over the end, twist into position. Slowly fill balloon, or empty the syringe then twist off before releasing end. Job done and relax, yes Al, you can stop holding it in place with your other hand now, the balloon is full.

We had a great blether, well I did. Camino Norte Nurse and I went off piste to describe blisters on the feet as I compared them to ulcers in the mouth. Both important to avoid but then once you have them, recognise and manage them. Like being daft with dehydration last week. I think being so well today shocked me, albeit I can't open wide no more, but Wednesday with nutrition will help me there.

I've a few other daft questions like why is my whole head so hot and yet my nose is cold and drips occasionally. Also my nose has never been so clear. My nostrils used to be constantly busy and now they're empty, ironically only now I can't smell. I told them the story about me cremating some bacon and then trying to eat the crackling I'd created. Wow, that set my mouth alight, all the salt I guess. Like last night when forgetting I have lost my salt receptors I added salt to the Dauphinoisse. Not as stinging as the kiwi fruit but still a good loud greeting by the zing zing receptors. Tonight I'll eat them as is. As life support sang on the single bland food is just a "state of mind".

Bloods done, water changed and other questions done I went back around to a new room for the radiotherapy. The room was colder which was great and a little darker which made me feel the radiation light show was somewhat more entertaining through my closed eyes. I had a long discussion with myself and concluded it doesn't fall under my claustrophobia because all the people are so good and the purpose is perfectly normal. Strange but I'm used to it. I was quite hyper, I forgot to take my top off before lying down. Unbelievable, I'm just rarely in the room.

I'm back on the park by 4pm and wondering what to do next. It just feels so good to be started now on week 3.

The song, while I lay and then as I matched against the school traffic became quite an anthemic ear worm.

There's a drum solo between

The bigger the pile 

Drum solo

The broader the smile

It went on more than 5 minutes as I walked to the park. It's official, my head is mince.

Time to leave the park and wander home.

More food pills football and sleep. What a good game the local derby was with Morecambe and near neighbours Fleetwood managed by Scot, Charlie Adams, who were 0-2 up before being pegged back to 2-2. Derek Adams the many times Ross County manager is playing his trade at Morecambe this month and has a 3-3 and a 2-2 in his last two games. I'd put more money on them again if losing at halftime. He clearly changed it up with 4 subs for the start of the second half.

Last slug of the 2k shot and a brush of the teeth and mouth guards in. My new technique to hopefully help preserve my teeth or at least get flourine into the bones as instructed by the Western dentists.

I slept until about 1am then took the mouth guards out had a rinse, another pint of water and back to sleep.

I'm hyper this morning. It's Tuesday I've got reflexology and reiki. I got to the bus stop early knowing rain is due so why I stood there nobody knows. There's a shelter at the next stop which any normal person would walk towards in case it did rain. I stood patiently until the bus passed me full of students heading to KB. How frustrating was that, until I looked at the weather and saw another great opportunity. 

Was it not just last week Al, that you walked to reflexology and back on a day when you did 12000 steps. Yes I replied in a dozy dozy way. Yes, I replied as I marched marched marched away. I made it in 20 minutes and had a great session, woken every 20 minutes for a glug of water to stop me drying out.

I walked back and had a great wander to the Western. A fantastic chat with the radiotherapy professionals and what a lovely bunch. I say it every day to them, how grateful I am and everyone I know. We are so lucky to be the beneficiaries of their dedication and love of their work.

Back in the park and in cafe Gallo by 3pm. What a great day, ice cream and coffee. Perfect treats after a session of radiotherapy. Throat cooled down and then once the coffee cools to tepid, a delicious coffee. So good I bought a bag. Deli and Oscar are such good company for a miserable self obsessed wee boy like me. Oscar loves his combat sport but the judo really did for his knees. It's a wise young man who sees the old with their dodgy knees and has the wisdom to protect his. Not many people his age could've worked that one out when the thrill of competition can be so overwhelming. It's great to also hear Joe's travels and the obligatory insty pics of temples and £2 a night glamping gigs. Being in your 20's has so moved on from transalpine rail tickets across Europe and throwing fun sized mars bars to guys on the top of the tour D'effiel. When the turn out to be road managers of the Clash and you get back stage passes for the 1981 gig at the Morador theatre it all makes a bit more sense. I think pictures of Buddhist temples will live longer in the mind than listening to lost in the supermarket, Washington bullets and another 30 classics. The sounds from the temples and the jungle will be phenomenal, the smell, the feelings must just be so overwhelmingly good, look what happened when George Harrison went East. He was in his late gap year but still probably in his 20's. We have such a global generation now and the politicians haven't realised it's not just the multinationals that are moving around.

 

We the people of the planet are moving around. I caught the bus back and it's all I could think about. Sobriety has long been way too creative for my headspace. I became a drunk early in life to control my mania, self administering drugs was folly and when I tried to keep myself sedated with alcohol it was a tad more successful. However, when I'm sober I'm like a child, hyper as a hyper thing disappearing down rabbit holes and coming back up out of fat Al foxes holes. 

What a mess I make of the countryside. If you've ever seen a fox with a 38" waist you'll know the kinds of hole they make. I'm sure the other passengers must think I'm on something as I can't stop myself laughing.

It's mental, I'm home again, Jackie has beaten her best yet again. It's mince and tatties, take some down to my dad and now all my chores done. Jackie made enough for cottage pie tomorrow so she's ahead of the game too. 

All my weights are moving back towards 16 stone so it's all good as we move to Wednesday.

Time to calm down, take some pills, sleep, sleep, sleep. 

Can you open your mouth for one last piece of cheesecake, oh yes you can.

Teeth, mouth guards sleep. C'mon son it's a school night, sleep.

Picture the canal at Fromista and water flowing gently through Spain.

and a grainy selfie of Stu and Simon

Lights out.

Sleep!

Food daily diary note

15 pints water plus tea or coffee

2-4 Weetabix 

1/3 tin of prunes and 3 tablespoons of yoghurt

Soup and a shot lunch with a sweet.

Main meal and two sweets, eg cheese and crackers, cheesecake creme caramel, ice cream etc.

This week's bloods - what's the body saying?

If only.my.body.had a voice , what would it say. 

So screams my head, every stuttering day. 

Have you a tongue in your head or is it made of hay.

When will this horrific infiltration cease and go away.

Yes, I feel like Ukraine, Myanmar, Afghanistan, Gaza and all those places where it seems endless bombardment of locals is not enough.

I in my wisdom did sign a form of assent.

Regardless of the circumstances they did not consent.

My treatment is time, money and patience we all hope is well spent.

Their tormentors leaders think their mission is heaven sent.

Aye it was ever thus but I've stepped over the line comparing myself to a war zone. I'll quietly retreat creatively behind my pain management barrier and advise any readers that my mind is full of mince but I'm not feeling any pain.

This is because I am in good hands and my doctors will tell all when the bloods are done on Monday. I'll hopefully be coping with the treatment and that my various organs are up to the job. That lack of alcohol does have a few of the pals rolling in the aisles, they feel a real pain at that thought. A bit like my student days this year diary writing is so cathartic.

BDGV, as we said back in the band days. Keep it simple, which with our skills was easy.

By the time we'd all reached 20 our single was hurtling towards #13007 in the charts, just outside the top 40.

As this is the end of week 2 it's apt that it was also the start of the third Life Support as Dave Porter passed the pounding of the pedals and the keeping of the beat to Gav.

Si had been bass player now for 2 years, D'ork having managed only 2 months but we still played his one song and two of his bass riffs. D'Ork famously asked me after we'd been to night moves along with another 150 to see a fairly new band from Ireland called U2. They were phenomenal and clearly better than us at playing, performance, patter and writing songs. D'Ork asked me why I couldn't sing like Bono, I just laughed and said " Cos ah Cannae". I think he could see he needed to find a better band.

Treatment for cancer often pushes your body to limits you never knew you had. I'm nowhere near the levels I have witnessed but I know they exist. A bit like music I saw some hugely talented people perform and suffering from pretending too much did eventually take a bow. Some people's journeys are so brutal and it's a measure of them, their families and the huge team at the Western they make it the distance they do.

To return to the band from Ireland one of our pals, Deirdre Featherstone, from Ireland was kicking the shite out of Cancer.com in her blog a few years ago and proceeded to take many co-survivors into the sea, at the nuns beach in Wicklow. Jackie would join them some years and one year they set a world record for the biggest skinny dip. They even appeared on Ireland's got talent with a big reveal at the end, raising over €million for charity along the way. All these women and many more had stories and the scars to prove it. I found it overwhelming and so inspiring. As I sat in the hotel chuntering away, the only thing I kept returning to was, Sisters really were doing it for themselves. It was raising a tear every moment I was in their company. They were living and I was so aware of what living meant as I sat thinking, as one of only 3 men, in the 500+ throng it was time to disappear. It left a mark that I'm proud to recall every time I need a tear. Thanks Deirdre it makes my wee journey a cakewalk.

I've mentioned Scott Miller and his run for McMillan a few times, I can't praise their work enough, it's amazing. He's prepared for most of the year and his journey ends next weekend. Good luck Scott.

It's a straight trade off sometimes between getting the pesky cancerous blinders out of your system and killing you in the process. Over the years these superstar oncologists have transformed the goalposts and the longer I'm inside the ropes the more I want to learn.

There's no doubt that Edinburgh punches well on the world stage never mind the UK and I've met staff and patients from around the country who clearly came here for the work or care. The gravitational pull must be huge for staff as the work is really valued..for patients it's pretty simple, a daily 2 hour drive is fine.

Last week I found out I was dehydrated and also that I was letting my weight drop marginally. I know my breathing's rotten but apart from that it's only my alcoholism that gets in the way of a good liver I'm hoping. Drink has always been my pain management so I've never used paracetamol much at all. Quite ironic how prissy I was about not taking pills after I was 25. I had no problem with beer and wine but no Pernod or pills. Bizarre really, but just another box in my spaghetti head. There are many empty boxes in my spaghetti head. It's a left handed trait. You learn things right handed so the empty box you have left, sits there waiting to process something but, nada, nothing ever enters. One day you turn the kettle and lift it with your left hand, ooh, that felt good and suddenly the box has an item.

Our designers choose for men and women to button up differently. How bizarre. Why would you do that? Seems like a great nonsense tale from the 17th century will follow about a machevellian tailor trying to elevate themselves from the more competent seamstress by switching the buttons around andtelling the Prince it's the latest thing from Italy M'Lord.

I'll park my spaghetti head there though, or at least drain some fluid off. I just received a wonderful picture of a cake from Rosie. It made me think about eating. This was a cracking cake for a budding 5 year old paleontologist.

I found it tough to eat Saturday and Sunday was easier. I tried to eat a kiwi fruit on Saturday after my many breakfasts and that's when I realised how ulcers could feel. With the jaw ever tightening my food options felt like they were narrowing fast.

That's when I decided golf could be the answer so Sunday saw me join the gang and get out for air. It was superb. I walked to the club and back, took a buggy round and as everyone will tell you the endorphins that get released when you're in good company are energising. I notice now how many of us have tea or coffee after, now I'm on 8 pints water not lager. I polished off my piece, aka some cheesecake, creme caramel and followed it with a bowl of soup. While opening my mouth is getting tougher I was happy to see the ulcers less irritable. 

Tonight's tea would take me under 90 minutes. I opened my second 2k shake and should finish it with my 4am breakfast.

All done I've no idea how I'm doing but when the bloods get done tomorrow they'll be different for sure from last week. I feel both more energetic today and happy. To me, it shows in my wee spaghetti world how much of a rollercoaster all aspects of the cancer Camino are.

I made up a game board using the normal concept of boxes that you navigate using a set of dice. I love the idea of rolling an 8 and landing on the box marked, you've done well, go straight to week 4. Unfortunately a 7 has your ulcers are really sore, miss a turn. Rolling an 11 sounds good but when I saw that box I did squirm. Blood test results reveal dehydration, go back 4 spaces. Next thing you get the ulcers again.

Luckily I don't know enough about how far my mouth should be opening after week two, but I am aware it's less than it was. I find in general any analysis that I do is unwise almost foolhardy. From the word go I've just tried to be in the moment of making myself the best I can be for the professionals to perform their work on. If I can present a reasonable specimen it gives them the best chance of a decent outcome. Judging by the cast who I sit in waiting rooms with, it's a given. 

Head down and week 3 starts tomorrow, anybody know a good singer?

You can't just shout Pearl at the screen, this is a blog ya daftie.

Reiki, Reflexology and Radiotherapy - such beautiful bedfellows

Everyday should start with reiki reflexology and pure relaxation. Just empty the head, let go and feel good. 

I walked down so felt good to finally have some energy to work with. An added bonus was finding on arrival that the toilet was empty. One thing exercise has always done for me is mitigate against the requirement for remedial laxatives. I was down for having some tonight but once I kickstarted the body again it was delightful that it still knew how to work.

I was going to bus back but it only a mile and I took my time to practice walking without sticks again. All boxes ticked I'm good for a wee shimmy down to Stockbridge and a stroll through the park.

I've got my day 9 Doctor update and after the poor early part of the week it's nice to report I'll be closing with talk of Tapa at 5pm. On Tuesday I thought that was a definite no go but today I'll celebrate the boys arriving in Spain with a wee party for Jackie and I.

They were out early at the airport, phone on table and gambling stats to the fore. Simon doing the mug shots while Stu does the mugs bets. To be fair, he filled his boots with a lucky 31 at the weekend so I'm sure he'll get a day more out of his change.

I needed a bit of hydration after this morning's session, it always dehydrates me but I've stopped in the park for a top up. I've got sugar in my peppermint tea water in my jug and a bottle of the blue juice so should be good, although I'm not staying in this sun much longer. It's gorgeous in inverleith park today. 

So typical that I'm not needing any sun on my burnt out neck. I'm loving all the good weather but it's not really particularly useful to me as I try to find a shady route. 

It's fun to finally finish a radiotherapy session and walk down to Tapa for tea. Doc let me know a few things and more if that later, Tapa and the Shore beckons.

Needless to say I got there first and got started on some bread and olives. I definitely need french time to eat a meal these days. 

It had been the plan until my weekend stupidity set me back. The doc advised I could have a glass of wine but judging by the size of my ulcer I may find it singing louder than expected if I did. I choose not to and found the fentimans ginger beer more than perform the singing trick.

We had a lovely wee meal but eyes couldn't match the belly. The diminishing appetite really is tough to deal with.

For once it was Jackie hoovering my leftovers but I did practice my chew. Oh yea, I practiced my chew for a good bit of time.

Home saw me chalk up more steps today than I had in the previous week.

Hooray I thought, but Friday would prove it a bit of a false dawn.

It's just general fatigue. From oral hygiene to the turning of the tube everything requires lots of little disciplines that I rarely excel at. The only one I'm any good at is getting the bus.

I was happy to see the closed bus stop was a bit quieter today. I was too slow to video the 10 people waving the other day in front of the sign.but I do have the visual memory. The sheer indignation as their anger rose so quickly. I could hear the chatter, all those verbals they were shouting, it was so visceral. Yet today those ghosts have gone and all was quiet. Hee hee hee, I chuckled to myself.

So I was a bit lazy today and only walked back a few steps through Stockbridge to Royal Circle almost climbed the steps to Scotland Street where Keith and I interviewed Paul Haig for issue 20 I think. He had a great flat with a mural. I got a picture which would prove useless in the age of 1984 and deadbeat printing, yet now would be on a phone and online on seconds. 

Hard to believe we collected 3 weeks of articles and news and then published it.

As I boarded the bus and thought it's now 2 weeks, only another 6 going down this painful hole.  The ulcers are making the exercise harder and I just hope I can put some hard yards in this weekend. I suspect though when they talked about pain management there's no hard yards to get, only to endure. This became clear on Saturday morning.

I've never had mouth ulcers before so it's quite novel in a brutal way. I thought the throat was bad but now the mouth has blown up all over. I suspect pushing through with the kiwi fruit was not hard yards, it was quite simply madness. The cooling of the 2k shakes gave me some respite but kiwi fruit was folly.

I've just nibbles all day today and tried to keep myself distracted with football, horses and jogging. The latter is so good to get rid of any thoughts. I might enjoy long walks but running when your breathing no longer works is fantastic distraction therapy. I managed two 50m runs which I can do in under 20 seconds. It only takes me 15 seconds to walk but it's all about the lungs.

Stu and Simon being in on Hornillos now also helps with the distraction. This cafe in Burgos is a last stop before you leave town. It's in the university area and full of students. The prices are phenomenal and it's hard to believe you're being charged with the amount of change you get. Never use a €50 as you get changed off €5.

My favourite view going into Hornillos del Camino arrived a wee bit later and was the final catalyst to get me off my sofa and out for some air.

It feels to talk more would just have me sliding into that peculiar world of the pity party so to avoid that, I'll reach for the paracetamol and feel a bit less pain. Stu had described vividly the very real irritation of ulcers and deteriorating saliva glands so it's not unexpected, just unwelcome this early. I'd hoped to get to week 4 before I noticed I can't taste any food, which makes it all a bit bland. The salt readers in my mouth disappeared a while back and to prove how my smell is I cremated the bacon, slowly frying 4 yards from my nose.

Managing the pain was a big part of what the doctor said I'll need to do this week after she saw the mess in my mouth and throat. I didn't fully appreciate how quickly it would erupt from discomfort to just don't eat. A lack of appetite that stems from everything tasting the same then just slides symptomatically into, remember it's fuel. That's why I'm still having Weetabix at 3am

Obviously you need to eat and you need to keep doing the oral Olympics but that's where the pain management comes in. I need to chew with little or no food. The best time to do it is after I've taken something, I'd add to be fair. Yep, it's only 2 weeks and I'm squealing.

I just hope Sunday brings a half decent round of golf and more distraction. A buggy would be good too.

The lights are on, but nobody's in - I failed the fluids - bloods don't lie

Yes, problem solved, nothing more complex than dehydration. You think you drink 10 pints of fluid but if half is tea then as the stone roses would sing, it's fools gold. I'm always leaving the lights on but rarely paying attention to where the light is shed.

Again, I've had those on the Camino as recently as Simon Stu and I in Templarios de Teradillos del Camino. One of my favourite albergues and we got alcoholic food poisoning. The absolute curse of the drunk.

It was a short 17km walk from Amanecer de Campos just outside Fromista, to Carrion des los Condes, then a wee bus. Fromista being famous for the canal and the fantastic train stop on the way from Santander to Madrid. It's also a short bus across the meseta to Burgos. It's one of the quietest parts of the Camino Frances as many people bus from Burgos to Leon. It makes for great friendships as well as some wonderful morning and evening skylines.

That afternoon, however, we got a wee bit carried away. We were out early and arrived at Carrion in plenty time for the 11.30 bus. We arrived even earlier to get a 3 bed ensuite room at the albergue. What could possibly go wrong once the washing was on. 4 pints before lunch and a bottle of red with the 2.45pm dinner. Siesta was called for but nobody heeded the call.

Simon drank a bit less but his best move was having what we had had for lunch, when we had dinner. We had what he had had for lunch. What followed at 10pm was a monstrous word association of head pillow toilet. I was first to go and last to stop. I basically was up every 10-12 mins as it was endless. Stu started his synchronization about 11 and we were dove tailing as best we could until 8.Simon slept through some and listened to the rest. Albergue ensuites are usually very compact and reaching the sink from the toilet is a master stroke. 

Next day I tried to book another night but had to settle for a taxi to Sahagun and a sleep on the bench at the railway station. I was bad. When I look back now I'm reminded that I wasn't that bad on Sunday past. I think we just need balance and to check if the lights are on.

That time we arrived in Leon after Sahagun and I slept in the flat for 20 hours. Next day I was still moaning loudly and was going to get the bus to Ponferrade on my own but we decided to stop at Astorga. 

It was there that I remembered the blue juice. Powerade has been my friend on the Camino on many occasions and today I bought 2 bottles. I've just had 5 pints of water with a splash of the stuff.

Unbelievable how I keep forgetting solutions to my carcass, but the lights are on now. I'm always encouraging people to drink water, not carry it, and if you aren't seeing clear urine, you need to keep hydrating. Hmmm, it's advice I've ignored for the last fortnight.

I felt like I'd reached Estella. It's normally day 5 but Rich and I arrived here after coming down from Bilbao. We had a last night in Vitoria Gasteiz with Stu and then carried on to Estella for 3 nights. We were able to do the stretch from puente la Reina to Logrono, culminating in the fast bus up to San Sebastian.

One of my favourites on the bus timetable, there is now a fast bus from San Sebastian to the Camino stopping at day 4, Puente, day 5, Estella, and Logroño day 7. 

With lunchtime Edinburgh flights to Biarritz it makes fast track tapas a thing. Logroño and Calle Laurel is tapas central. So many options so much fun. I had fajitas last night for tea to try and bulk up and get over the sore throat thing. It sorted of worked but I could do with a wee trip south.

So today it's Wednesday and I've had the 2k shot plus water and now I'm relaxing with my teeth in their mouth guard soaking up the flourine toothpaste. At 12, I'll venture out into the heat for a stroll and get down to the western for 2:15.

Today feels like #8 of 30. That's pretty special.

I look forward to saying day #420

Another wall, well a kerb...

Yes, it was a kerb but it felt like another wall. Bed by 8pm and up by 2pm sounds about right, back to bed for 2.10pm felt wrong. Especially after a great day at the football.

I'd thought I could do this a bit more justice but it's just a pretty tough grind. I'm filling up with fluids and letting my body do the rest, except it's doing nothing. After zero alcohol for so long could a 0.5% beer really do this?

Mouth Olympics can fill the gaps until the next you tube song starts.

To be honest, Sunday's just a bed day. Try and feed but it's empty. Tried to get interested in the TV or football but there's nothing at all in the tank. It's not even fumes. It's a bad post apocalypse movie and the burnt out cars are piled up. The Penny Drops as the mushroom rises. In Camino Frances terms, I've hardly left the restaurant in St Gien pied du Porte and already I'm hunkered up in Pamplona on day 6. Pamplona would normally be day 3.

Pamplona is quite an apt analogy. In 2007 Simon and I arrived there exhausted. Our adrenaline had seen us over the Pyrenees but like my current predicament adrenaline can only get you so far. We were in a mess by the time we found a hotel at a price we were happy to pay. With hindsight we paid £90 instead of £140. We spent an extra bedraggled hour searching for the bargain. It was the same night James McFadden would score against France as we won 1-0. 

Simon was asleep on the bed I was still watching it with blackberry in hand betting on 1-0. It was 17 years ago and not far off today's date. I look back at www.500m.wordpress.com the first blog with huge affection. It proved the latest twist in my re-invention. 

We'd given up smoking, Simon, Paul P and I in 2005. We did 9 months and the plan was to start again but I never did. I still miss it but unlike the other two, found my lungs happy for the respite. Our way had been planned to lose the weight we inevitably put on from this brief smoking respite.

I learned a bit about fuel from the blog that September. Simon mentioned regularly how I needed a jump start in the mornings but one day I discovered donuts. Clearly the fuel was fast release sugars as well as the sustenance a few donuts gave to the harder miles. I feel a visit to Fisher and Donaldson for some fudge donuts this afternoon.

Not before time as I'm losing the battle today. Ground will be lost on the weight for sure as I just can't take anything on board. I'm trying the yoghurt and peaches, avocado etc but even the wee 2k shoots are like lead.

Finally managed a double Weetabix at 9pm but it seems to be coming out faster than it's going in now. Clearly I'm easily befuddled. I'm not, it's just a few self absorbed tough yards on the journey.

6am and more Weetabix but the weight damage is done. I'm half a stone down again. The weight fluctuations are myriad but 15/13 is new to me. I was 17/3 after the overnight flushing last Tuesday so it's normal, but I just need to get back to 16/2. Saturday I was 16/6 but it is just what it is.

I hope the wee bit air on the way to radiotherapy today helps. It's Monday, 2pm and time for more.

After radiotherapy it was bloods and water bubble tube change. Another new set of nurses with a 3rd year trainee working towards her frequent flyer taking the lead. I also had a mouth inspection so I need to do more gargling before these ulcers become ulcers.

The mouth is now officially sore. It just feels like a strep throat but as that was day 6/30 I would imagine it's only 3 more sessions and I'm a wee screaming bairn. More gargling and teeth support.

When in doubt resort to a cheese sandwich. Followed by ice cream and more diluted 2k shots. Then pasta then Wrexham at Birmingham, then mouth guards with toothpaste, then sleep. Then Weetabix at 5am and more juice.

It's all there is in the tank. Keep eating and drinking..food is fuel, we know it and without it we feel leggy and tired.

I feel repetition might get me to realise but sadly no. I'm just writing not eating.

It's clearly time for the donuts. I can't possibly ask someone to carry me through the rest of this.

Today is now Tuesday, my 7th session with the radiotherapy and I still laugh at the success Caitlin had in making this whole experience not just tolerable but enjoyable. I keep forgetting to take my hearing aids out or switch my alarm off but that aside I'm loving the whole acting gig I might get as an extra the other side of 2024.

I know it's crazy how quickly a selfie could transform such a scary moment into one of such joy, but somehow it did.

So much was straight from the breathing that Caitlin's Alexander technique teacher told me and the rest is just the stuff of fantasy. 

I can't wait to put the mask on with the nappy as we get the band back together for a 45 years on. Not sure there'll be an audience for it but "Fall from Grace" has a certain piquancy now and "Watch you Grow" has cancer catchy tune written all over it.

When I was listening to "Spellbound" the other day I was reminded just how that song and sound shaped our later years. Lots of intricate guitar, bit of driving drums and cavernous cacophony until it's breaks into a delicate dance where you're picking flowers from the air, casting them to the corners of the room and generally enjoying the space time continuum.

As well as getting the band back together I feel it's time to do "The T'uther Ones", a gentle 6 song tribute act playing some of the finest pieces I've ever heard, including, "Another Girl, Another Planet".

Judging by my energy levels there's a fair chance a four song set will suffice, or perhaps just a Peel session.

It must be moving towards my 14:15 so I better jump aboard. All that nonsense of walking everyday seems a good week ago. I've got the mental image, I just need the Donuts.

NEW VINYL FROM Last night from Glasgow - presenting The Cathode Ray

All the vinyl is being funded by presales so what are you waiting for. If ever an album is gonna get me through this cancer treatment it's the Cathode Ray.

Huge thanks to all associated for letting me know.

Saturday 3pm - week one is closing and the Saints are Marching

It has been an eventful week and now it draws to a close. I've not been on the clock for a long time so when Friday evening saw me in bed early I just considered myself another commuter doing their thing.

Jackie and I were both exhausted and there was no fight to do the dishes. If you ever want time to stand still this is the way to do it.

There's so much happening I felt like at times like I had left over pieces from an IKEA shelving unit. So I've got two steroids, five of these and what were those long ones for again.

In my limited research about the treatment I looked up continuous treatment and what happens with breaks. Does the cancer dig in and have a field day while you stop for the weekend. Does Cancer get paid double time on Saturdays and Sundays to restore what might have been destroyed Monday to Friday.

Well it's a bit of both, was what my study showed. To be fair, if I read it correctly, this is the boy who read two tablets, twice daily and took one twice daily, had 2 left, but if I did read it correctly, it was ok.

Cancer didn't regain full foothold. You could probably argue for any time lapse, ie daily instead of hourly. Would it be better to have 24 hourly courses of 3 seconds than one daily course of 72 seconds. The efficacy conversation could rage, which I imagine it does with oncologists as they perfect their treatments fully aware they are specifically targeting unique cancer tissue in different individuals every time. Wow, wonder why I think they're so clever, yes, there's another reason.

So I have my two days off and let's hope for a return of energy. I'm plain exhausted. I get bouts of minutes now, not hours where I'm buzzing, then the adrenaline vanishes like a Monkey magic trick.

It's 5am, I've put Weetabix, tea, Manuka and some 2k energy in. Let's get back to sleep.

Did I mention my hearing? It's worse than ever. Tinnitus is a bi-product and doubling mine is more like cubing it.

So no scratching eczema and not hearing Jackie, or would you prefer to hear better and itch like crazy. Ooh, that's far too difficult to answer.

I'll abscond back to May when this Cancer Camino was a pipedream. It's something we don't always get too nostalgic about, but when we were ornately oblivious to our celestial pathway. A wee cuddly lump in the neck as we drove up the windy road to Crail in May.

"I must go and see about this as it's now 5 days." Mumbled the back seat passenger. Here we are now, only a dreich summer later entering the last 8 weeks of a comprehensive diagnostic summer as the body got limbered up for the road ahead.

I keep referring to Scott's Macmillan marathon. He started his training before me and will complete before me but the cosmic timing is beautiful. We are both trying to do our bit. 

He's got his body into shape. He's got supplements, shoes, the gear that's bound to give him the edge and I've got my mouth Olympics, feeding tubes and other paraphernalia. 

He's lost 2 stone Ive lost some tonsils teeth and a mere 1 stone.

He's done everything he could to be ready but of course there's doubts about what else would shave another second or two. I've got the same thing except I'm trying not to shave, apparently it's another bonus, no razor required during treatment. additionally this is one time for Fat Al to add weight, he says at 9am finishing yoghurt and peaches in a light syrup. 

Yesterday I was at cafe Gallo for a spicy fish soup and some ice cream. The perks are endless 

Every morning when I'm flushing my tube I'm thinking Scott is kicking his trainers to get any stones out. It's a lovely made up metaphor, I'm sure there's no stones in his shoes. It's just preparing for the day ahead and building on the blocks of experience from the past.

As I look further back to Arnaldo and Stuart, who were treated during COVID I'm reminded of many more tips on the journey as well as the trip wires too. Who can forget the chocolate biscuits being too big for Stu to open his mouth for. There is legacy,.make no mistake, there is legacy, even when you plan as meticulously as these two did. I might joke about stones in shoes or mouth Olympics but they do feel real.

Four years on we're going to watch.the football, the crowd has changed, Frank for one is sadly.no longer watching with us but I'll be wearing my hat today in his honour, I sadly don't possess his mullet to do it justice.

This dapper auld gent, at least 5 years my senior, with a heart of.gold is buried by a number of other pals in the Craigmillar Castle park cemetery. He has a Hibs mug by his head and a few pals from the terracing nearby. His Camino would see Hibs win the cup but sadly when the cancer returned there wasn't a second strike. Frank did however, do it his way and while we miss him, his wit, his hat and his sartorial elegance, he's still a wonderful ghost on the concourse of the east terracing and every time I see a pair of sharp brown brogues I have to have a double take just to check it's not Frank.

We regularly lose to St Johnstone, Livingston and Ross County, our bogeys teams, along with Celtic, hearts and occasionally Rangers. To be fair, Rangers is probably less of a bogey team than the blue of the Saints, but I'm no historian. Ask a real supporter, I'm just a pitcher upper, 5 times a season. 

Last time I was here I was very confident we would destroy Aberdeen. We were 2-0 up very quickly and flowing well, looked great,.then just downed tools, relying on our keeper to rescue us that day. It's only a year ago but that team has gone. Some were playing for Raith Rovers last night and they looked themselves. Our old hero Lewis showed how.strong he was, almost knocking a boys head off while, Hanlon sadly turned his back to block a shot going wide and turned it into the far corner, having earlier been a bit slow on the turn which resulted in his colleague foolishly getting sent off. Strange affair last night and today all told, I think at least 6 players will be different from my last visit.

The story of Dunfermline v Raith needs a Skids moment so with the Saints coming to town I feel reference to that great song long overdue.

Stuart Adamson adorned the cover of our first 1000 sell out edition back in 1983. I think we printed 1200 and they all went inside a week. 

If you go to the home page you might be able to click the link. A great drawing by Hilary and a superb industry busting first New Order interview by Karen. She beat sounds by 3 days and we managed to get it out the day before them. 

Ha, no mobile phone hacking in our day, when a scoop was a scoop!

Day 4 flush

I'm far too excited. After my radiotherapy I was due a flush 5pm but they kindly took me early, my cashmere and fleecy double helped the canula strike vein first time and we're off.

Top marks to the staff again, in reception, radio and here in ward 1.

Never have I enjoyed 4 days of interesting medication so much.

Tomorrow no more flushes just the radiotherapy then party time.

Hibs host st Johnstone on Saturday and a fixture full of the saints turning us over, but this year feels like a 3-3. We lead 3-1, concede late, again.

We go mob handed. 4 of each side will meet in the Bellfield brewery before and after to deliver pre and post match verdicts. 

The match day mascot is local celebrity Callum.

So we've got food first as well which should be fun. It's also post match for the cancer with two Hibees in Arnaldo and Stuart, both moving to 4 years on from their own worst of times. Stuart from what I'm getting and I still feel for him when we eat. The removal of teeth and rendering of saliva glands leaves him with a legacy nobody would crave. I of course destroyed so many of my teeth before my 20's that I didn't need many removed. I'd lost my massive chew sets before the Bee Gees sang the song. I'm also known as a slavering shreck so for the saliva to slaver less has no monstrous effects excepting my dinner table diners need not adorn their poncho's when I'm eating. 

The other obvious caveat is a pulse. Without one we needn't discuss saliva, choking or chuntering about choppers.

My more precious concern is how I confess to having taken three days to read 2 pills twice a day. I even mentioned metadexanation on the blog, my two, twice daily tabs I took 1 twice daily until realising. Sounds like a Mia culpa, sorry. What do I do now? 

I took one with my 4am breakfast of yoghurt and peaches, then Weetabix with tea. It means, i'm only 2 light and 10 hours late. Less time on the naughty step but will I learn the lesson to read out loud and check with a more sane person in attendance.

As I'm sitting on the naughty step I thought it time to see how my Political manifesto is going.

I got stuck at medication the last time. I wanted a market model that was distorted European not north American.

The problem for me is that America is driven by two desperate bunches of despotic and destructive Divas. The insurers and manufacturers fighting products in the the courts, rarely counting the cost of delaying the cures. 

I met a great cancer research Professor on the Camino in 2013. We walked for a few days as he listed me many of his cures and why they reached local deadends and why he'd had to send out of Vermont to the wider world to progress, curiously to Lund in Sweden which made me chuckle at the time. He explained why the market didn't work for the many cures and the complexity the industry faced. I'm sure it still does and if he's still in the field, I'm sure he has a few more contacts he passes his intelligence to.

I understand that drug companies need their patents while insurers are protecting their insured by not allowing high octane expensive treatment to become available but neither helps the patient.

My manifesto would be patient led. I believe a left handed capitalism approach can produce a solution and it works better when you focus on the complete beneficial outcome. Right handed schematics seem to be naturally directed by immediacy of returns and not their longevity. This is normal as the cycle reflects the individuals involved. This indeed has been normalised into what management regard the 3 year cycle of change. When you have an industry called change management l, you know where you're heading for. The clue is indeed in the title. You will get change, not product, not cure, not even profit. You'll get change.

The market needs to produce, and it can produce and procure a patient package. It needn't just be about profit, we can make money from it, but maybe not low hanging fruit funny money. Not Change money where the fruit nearest the camera can obscure the frost damaged nonsense behind.

Talking of fruit I took myself down to see how the Joan were at the allotment. It was 5° at 7am here in South Edinburgh and it was chemo cold. I had my coay cashmere liner on inside my top and it was required. The allotment proved a bit too much for me but did perform it's outstanding early morning task. I did not need my sachet of Laxido, half way up the path to my plot I realised as all gardeners know it's time to get back to the house.

Superb, I thought. A handful of flowers and raspberries, leave the potatoes and all the rest 

Grab a few apples and good to go.

Yesterday evening as I gazed over the water in the park at Stockbridge I thought what a great view. 

Sun was moving slowly, a bit like me, and there was no rush. There was a calm about the moment, even the people on the benches and lying on the dewy grass just seemed caught in their own mystical moment, magical.

Many of us live in beautiful settings where we get the chance to ponder little and wonder a lot. I get that so much. I can stand at O'Cebriero for about 20 minutes in a complete Dwaam. Shiskine can do the same thing standing on the 4th tee. So many places where I feel so alive and yet I'm doing nothing. 

I read a beautiful line articulating more eloquentoy than I 'what a lot had happened in the year gone by and now a fairway at Crail......' Its resonance was perfect. There is no answer it just is.

Sometimes you just have to breathe it all in and let it settle in your lungs.

I was sat opposite a guy getting his last chemotherapy and we were talking about music. Later on ge explained how a chest infection led to his first X-ray for years and Lung and eusophagus cancer. Caught early enough and treatable. Wow, I thought, I just keep learning.

Robert Wyatt part 3 - Diving for Pearls

Tomorrow I might not be last out but today they were nearly putting out the lights on me.

What a great day. I arrived on time saw a load of great people and finished up with a wee delay as the veins didn't play ball but on the 5th attempt I heard the cry of house.

Yeah bingo! 

Fat Al veins are just proving a bit wriggly at the moment so I might jog down tomorrow. To say I'm too laid back is a massive understatement. I was so horizontal there was hardly a pulse. Chemo can do that I was assured. 

I got kicked out about 6 30 and was exhausted and hungry after all my exercises. Instead of chewing air I ventured into cafe Andaluz.

With all due respect it tasted like the pre theatre meal at evening prices. To be honest chewy batter is probably a better task for me and the peppers were fine if a bit few at £1 a pepper. The gratinadas had the wrong tatties in them but I always like my food and licked the plates clean.

Job done and my next Dexamethasone tablet taken. Two more of these with food tomorrow and that's them in the bin until week 5.

I don't mind repeating myself but there a lot of stuff behind the scenes. Staff were brilliant again today but I've got to up my game.

The following constitutes my extra training as dictated by the coach.

Teeth

I've got the pre and post food mouthwash, teeth brushing with no food after for an hour and also wear my mouth guards coated with 5000fl toothpaste for an hour.

Exercise 

Already, the Andy Murray, show us your tonsils and growl is tougher than 3 days ago. I need to do it more. Stuart reminded me only last week of the visit to see Arnaldo and he couldn't put a club biscuit in his mouth. If Arnaldo's giving me biscuits I need to be able to eat them.

Side to side is still ok but the hold your tongue in your front teeth and swallow is tough after 3. Getting to 10 requires to magic saliva up again. That won't be an option in two weeks so a wee bit more needs doing now before it's too late.

Some of the others are also proving tough so ultimately this early it's a poor show so getting back in the mouth gym, esta muy importante.

And finally the veins.

It's not a lot to ask so tomorrow I will wear cashmere as well as normal fleece. Extra heat will give the staff a break.

Job done.