Friday, 4 October 2024

Week 4, day 3 nutrition and the rest of the week #18-20/30

Well I spoke too soon about imposter syndrome. I woke through the night to feel the lump a bit sore. 'Never had it felt sore, that's new', I thought. Luckily we have the Doc tomorrow so they can explain or possibly the nutritional people can let me in on some of the well known progressions. My beard is self trimming in my sleep which helps. 

Wednesday is washday at chez nous in sunny Oswald Road. Here at Kilravock house we have dedicated laundry days and ours is Wednesday. With Jackie ill I've got it all to myself so worked my way through the stuff steadily and now it's time to go. Happily Jackie has shown signs of movement and it's helping her. Missing out on laundry day can be quite a health benefit.

Breakfast is a bit chaotic as I'm sleeping through the 4am shift and waking at 6 to do my teeth. By 9am I'm pretty hungry to be fair and the scratchy throat was a bloody mess. Nicely cleaned up I got started on my Weetabix and coffee. Probably should have more water so will work on that.

Jackie really not well so doc has been phoned again.

I passed the weight test being up 1kg on last week and nutrition giving me a gold star was followed by the Doc saying the lump hurting was in line with expectations as was the ulceration in the throat. She was really complementary about my outlook but I just referred back to everyone here whose efforts I just trying to match up to. I also fully expect next week to be the actual starting grid and that this is nothing, which seemed to be on track. They might lower the chemo to a lower dose as the issue with my tinnitus is probably going to be even worse.

That said like nutrition I was in and then out. I made it down for my ice cream and tonight it's mackerel for tea. I'll try to get the bones out before the swallow. What could possibly go wrong!
I jumped the 24 again and got off in the meadows. The summer pitch n putt will be opening in April but for now it's the 9 hole winter course.
I like the walk up to David Gass of record shak's bench, then I head along whitehouse loan into the Astley Ainslie.
I can't help thinking how perfect it is for a new cancer hospital. The land will be worth plenty in 25 years time so use it NHS, use it now, for care. 
We will need a massive investment in 25 years time and probably not a big hospital so think about this as an investment in the future. Also if you build affordable houses on the site for staff to either rent or buy you'll have made the case for housing for 25 years hence when hospital service provision will have changed dramatically.

Energy levels kept me from meeting Jimmy and so I was in bed by 8pm watching the football scores unfold and the ex Hibs manager Heckinbotham see Preston's demolition of Watford without ex- Hibs Porteous who was on the bench.

Sleep and gargling followed and then breakfast at 11pm. Then sleep again and I slept through to 8am so missed my teeth out. No gold star there. I'm definitely getting the wee tired boy thing. 

As I mentioned before yawning is sore. I really need to sleep when it starts. Everything in my throat cracks open and I need more than a soother to quieten me down.

I tried pushing the tube in a wee bit when I was turning it this morning. I'm not sure it moved in much at all but it's slightly less nippy so all good. I took paracetamol about 7am so happy to report not needed more yet. It was clearly sore but the gargling and water had it easing. 

Chatting to Caitlin about the gift of opportunity cost, from an economical and psychological perspective has really been so beneficial in this phase of life never mind generally. From the nature nurture debate to the choices routinely make it's why the population diversity is what it is. Some people were carried as a kid because a parent loved having them on the shoulders. Later in life that same kid, like my mum would recount how she hated walking over the pentlands and always took a lift if offered. In fact the idea of taking my mum for a stroll was an anathema. I always knew when she appeared at the golf club she was clearly not herself. Whenever she appeared she would ask where my dad was. I'd say has he abandoned you again. Let me get you a coffee. Oh that would be nice. We'd have a coffee and then I'd let sher know I'd send him home. At first I'd make sure she got home by watching from a distance. Shed walk down the stairs out the door done the road. Check before crossing then get to the house, unlock the door and get home happily.

Later on I'd walk with her and settle her into her seat and wait for my dad. We'd chat away and play cards and he'd arrive back from the dentist or wherever in a fluster. It became pointless to let him know why I was sat there so instead we moved to celebrate his new filling or whatever sprung to mind. The curtains were still open on those days so Mum would get out of her seat and remark about the cars outside. She wouldn't recognise one or two of them which always left a space for my nonsense to fill the response. Yes it's my new car, if it was fancy enough or that's the new neighbour up the road. Then a complete back story on someone who didn't exist but would be in the cake decoration game like Mum used to. These ridiculously made up events didn't appeal to everyone but I thought it was fun and seeing her smile and engaged was half the battle 
I'm sitting in the sundial garden at inverleith park and couldn't help thinking this bench needed a wider audience. Iain clearly liked a dance or this wasn't irony. Either way, it works for me as an epitaph.

Mum's bench sign would be, she hated walking, until she forgot she didn't, then she couldn't stop. She sat here and wondered why. If say it was because she was exhausted after a life looking after others. Shed smile, laugh and say, yes I deserve the rest.

It's my 19th session and looking forward to the ice cream already. As I say, I can't taste it, but like all ice creams it still feels like a luxurious treat. The sun's shining so that just adds to the experience, especially as I've got the hoodie on to protect against excessive rays after a session at the ultra fast tanning studio.
Caitlin met me at cafe Gallo and what a great laugh catching up with Deli and Oscar. She had a wrap and I eventually order a bacon wrap to try. It was a good 30 mins to eat half but it's good to realise as tough as it is I can do some crispy textures. Afterwards I realised scrambled egg on brioche is the way forward.

We walked back through memory strewn streets. Up Gloucester Lane to WoodMac via new town hotel our old lunch haunt, Oxford and Cambridge, where Jackie famously rowed for the Oxford team, then via the cemetery to king's stables road and Stocktrade first large premises and along to the flat which still has the name plate McEwan, McCallum Lynch outside the door.
Up the vennel past the fiddlers arms, past Heriot's and into the meadows. I do confess to a few resting spots before we finally got home and my 14000 steps hid in the shadow of hers which included a 8.65k run in under 50 mins. That's a pace I can only dream of just now. That's 2 hours minimum for me.

Once home we were all happy to slow down and switch on "slow horses". Cait made scrambled eggs and we ate, then I slept, not before the other half of the old firm gave me a lovely wee windfall for 5 goals in the game. Scottish teams often punch above their weight but against top class players there's no punching anything but air. As Celtic proved the day before scoring a goal should be enough to feel it was a good performance. Imagine Pele lining up for Brazil against Meadowbank thistle back in the day. It's just not a contest, but fair play UEFA for giving the teams a chance to measure the gap.

I took a diahydrocodeine and fell asleep at 10:30 feeling pretty sore and restless. I woke at 11:40 like I'd slept all day. Up and down as usual through the night and then Weetabix and paracetamol at 4am 

Felt quite tired so on bus to botanic gardens and will have a quiet walk today.

I hope energy returns with the walking.

Today is Friday, it's Zap #20 of 30 and it feels like I'm approaching what I call the starting grid.

All the good work has been done. The throat and lump have been softened up by the chemo on week 1 and 20 sessions of radiotherapy, here comes the onslaught.

Next week has an overnight stay for chemo, regular visits to ward one for flushing and the usual daily franks, as in Frank Zappa.

My throats still allowing food but it's a slow process and as the bacon wrap proved yesterday getting slower. The main thing over the next month is to protect how little that swallow is and to keep the Andy Murray gob opening wide. It's one time when it's really is no pain no gain. You feel your throat cracking open with the exercise but if you don't do it there'll be no elasticity and you'll be left using the tube for feeding. 

So we've found ourselves in a good place this week and fingers crossed we can carry on for the next month. Once November arrives I'll be feeling the world improve and can get back on the planning for a different type of Camino to endure.

I've got to say though, this one has been fascinating. Full of learning and more fun than I expected.

I reserve the right to change my view but at this moment I'm sticking by the golden ticket theory I mentioned a few months back. It really has been a joy.

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