Letter from the North

Scan results, dentist, a lot of pain, oh and off to Shrewsbury Folk Festival – 17-Aug-2019

Random pic of Burli

There are probably suitable pics somewhere but I can’t find them, so here is a random and old picture of Burli and my less than stellar legs 🙂

Sat 17-Aug-2019 

Time to start packing the van for Shrewsbury folk festival. 

First, fold the stuff that came back wet from Warwick (tent, groundsheet, windscreen cover, … The buggy kennel was still damp so we just left it in the sun for a few hours and all was well. 

As we did in Warwick, the solar panel is loaded, forecast is for cloudy so I hope it still generates (just) enough power to keep the batteries going for the full 4 days of the festival. If we make it the full length, we are talking 3.5 days (7am Fri – 6pm Mon). 

My sun hat should have been in the door of the car but it wasn’t. Today was the first sunny day for ages and so not worn since Warwick. Hmmm, next place the buggy basket or buggy bag. Nope, somewhere in the house we should have a spare – we had two of them. Nope absolutely nothing. 

Later on, I felt I could imagine it getting into the same bag as my full waterproofs, no real good reason but it could have been or in the draws where we store stuff in the tent as I remember putting the hat on top of the draws at some point. 

Well, not in the draws but YES in the waterproofs bag. 

Sun hats for my (man sized) head are hard to find unless it’s boring man, white, khaki or camouflage. But this hat was from M&S and fitted my head and is totally crushable and hence works well for festivals where there’s limited space to carry around and the sun tends to come and go. 

Phew, that was a relief. 

I have no idea what else happened, that was more than enough to wipe me out. 

Sun 18-Aug-2019 

Cooked flapjack and fish pasta this morning, it totally wiped me out – as in unsteady on feet, unable to be coherent, … 

Fish pasta is a Teresa recipe that I fodmapped, pesto pasta is a recipe of my daughters originally, that I Bean’ified and subsequently fodmapped. I alternate making a “large” batch of the two recipes and that provides me regular lunches. A batch usually does me a couple of weeks which keeps fine in the fridge. 

I’m autistic, I think it’s great I alternate lunch’s every 2 weeks. I used to have the same lunch for years (like 20) at the time, I don’t like change! 

Slept after lunch – well I should have; it was only 45 mins but … Totally groggy afterwards and should have known better and instead did some more packing the van. 

BAD Move I should never do anything “physical”, which, for me is a very literal thing, anything more than sitting down, even standing can be too much! 

Checked the battery charger in the van (for the buggy batteries) making sure they are fully charged after Warwick – that’s how little I get out, not used it since. 

Anyway, charger insists on showing a RED led or if green pick up the charger and it goes back to red. Panic – need to replace buggy batteries? I know that they need to be kept charged but, … 

I tried both batteries, one should have been fine and at first seemed so. I checked a few hours later and it behaved the same so I tried my “backup charger (I’m not called spares Bean for nothing!) I had already packed it to go (so I had both chargers with me – I always do when away anywhere “just in case”. 

Anyway, it was happy that both sets of batteries were fully charged so the other charger was working apart from the “it is charged” led. 

Phew – saved money, new batteries around £90. Still now I need a new spare charger – but that’s £20, ordered! 

Interestingly the “official” charger is circa £150 and lasted a bit over a year of not intensive use. So will stick to “low cost” replacements and carrying a spare! 

I got myself in an awful state and although I crashed out around 9pm, the subsequent poor night of sleep is very understandable. 

Mon 19-Aug-2019 

Posted this to FB this morning: 

4am! Been awake since around 3am and given up and popped the kettle on. Can’t imagine why I am awake. 

Oh, well, maybe I can. Last Tuesday CT scan, this Tuesday venesection, this Wednesday scan results. 

Nope, absolutely no reason at all for my brain to periodically go into overdrive and refuse to switch off. 

Oh well, the advantage of working from home, I can sit here in my home office and get ahead on the weeks work to cover the time I need to spend in hospitals this week. 

Oh, the joys of cancer are so rich and varied, you just have to laugh? 

Oh, and yes, I am mega fatigued, I am exhausted after the weekend, but being fatigued and being able to sleep, well 

Oh, why do I keep writing Oh, … 

So, there you go, this week is going to be tough, especially as we still have to finish packing the van for Shrewsbury. We leave around 8pm on Thursday evening and will prob sleep somewhere on the way arriving at Shrewsbury around 7am (when the gates open) so that we can get a pitch that we like – reduces stress. 

After our problems at Warwick a month ago we are both rather trepidatious, be surprised if we weren’t. But we are trying, it shouldn’t have to be this difficult and it’s REALLY bad timing I have so much medical stuff at the moment – Wednesday is NOT just scan results, in the afternoon it’s to have the temporary crown removed, the new one fitted and a filling done. That’s going to be “fun”. 

Poor Shropshire Folk Festival really does have some challenges being thrown in its path. On top of which it’s a new festival with all the worries I get about that (hence the 7am arrival to give me time to find a nice pitch without too much pressure). However, it’s a bank holiday weekend and … 

Worse we are due to finish at 6pm bank holiday Monday, apart from getting off the site with everyone else, we would be hitting Birmingham and the M6/M5 roadworks around 7pm on a bank holiday Monday afternoon with loads of people heading home after a day or weekend out. It WILL be so much fun, the thought of it is enough to stop me leaving the house to go there in the first place, I will, of course, and I will “manage” my worries about the journey home and try to stop them taking over our time in Shrewsbury, but it’s hard to keep the obsessive worry (thanks autism) about my inability to control EVERYTHING and that journey home. 

Suffice to say that I use a well-established “counselling” technique and cope by keeping an idea in my head of my relief at parking the van on the drive way, late Monday or early Tuesday morning. Keeping focussed on that image helps me cope with the worry. That technique is fundamentally CBT. It’s something you can do for yourself; it can help to have a therapist to learn and understand the technique but it’s really not rocket science. The NHS like CBT because it’s quick and easy when it works, but it needs to be used for that sort of problem, there are a LOT of problems for which it merely sticks a band aid over an underlying problem. However, for this specific circumstance I find the “visualisation” (which is not actually visual for me) of my goal helps me jump over the worry over the process of actually getting from A to B. 

Otherwise, just getting on with my day job. 

Tue 20-Aug-2019 

Venesection at 8:30am, went fine as usual and home quickly, but, as it always does, it knocks me out for the rest of the day 

Wed 21-Aug-2019 

This was, I think a fairly normal day, oh no, it wasn’t, I had clinic followed by dentist for a filling. 

Clinic was OK – no change (stable), the closest I get to “good” news nowadays. Actual good would be “reduction”. 

Then onto Pz and the dentist. At the time it seemed to go fine and the new crown was fitted and the filling done. 

The dentist’s chair was as uncomfortable as it always is but … 

Thu 22-Aug-2019 

Awoke in a lot of pain, back, chest, shoulders, neck, … As far as I could work out the muscular tension from being in the dentist chair plus Pazopanib’s penchant for muscle and joint pain worked together. Coughing hurts, breathing is not fun, … 

I am not capable of anything, including packing the car, so the last bits are down to Teresa, thank goodness the bulk was done at the weekend! 

I hate pain killers so avoiding them for now. 

Our original plan was a departure around 8-9pm, sleep in the car and arrive in Shrewsbury nice and early (gates open at 7am), 

However, Teresa decided that yes, it was time I was allowed a new kitten (after my Ferret died so young a few years back). It does mean “we are five”, but in reality, three of them are getting on a bit and Barney (3 years old) is still frisky and full of beans and nobody wants to play as much as he does. 

So, we are looking for another Oriental (as Barney and Spook are) and a boy. Teresa found a place with a kitten near Taunton and we decided we could call in on our way up to Shrewsbury, agreed that with the breeder and set off around 5:30pm. 

Arrived and found the place easily enough but the kitten was a very frightened little thing and so we decided no. We drove on as far as Gloucester services arriving sometime after midnight – I don’t remember when and slept in the car. I was in so much pain I didn’t really sleep so by the time I woke Teresa (who went out like a light) at 6am I was exhausted. 

Fri 23-Aug-2019 

However, Teresa got her almond croissant and then off we went, getting to Shrewsbury around 8:30am (gates open 7am), it was quite busy but we got pitched up in the disabled area OK.  

Teresa did the bulk of the work in setting up camp and we then got our wrist bands and I went to bed in the van to try and catch up on sleep. Not easy since it was Mega hot and I ended up sleeping with the door open, exposed to the world and very hot. 

I rested more than slept, but it worked. 

The main loos were all at one end of the site but disabled loos were scattered around the whole area. Hmmm, it’s amazing how many people become disabled for “convenience” :-). Fortunately, they put padlocks on the door that use a Radar key. Brilliant except radar keys are cheap as chips and available on amazon for anyone. The festival also “rents” a radar key to anyone who wants one (something I was later to be grateful for). Oh well, the system clearly got abused but not too badly and less than without the padlocks. 

Things been all quiet on the poo front, that means TOO quiet and so I’m starting to “stretch” my fodmap rules. At Gloucster services this mornign I had a sausage bap as my 2nd breakfast – onion in the sausage, gluten in the bap. 

Quite nice as these thigns go but no impact on the digestive tracks, this does NOT bode well. Decided to go “al fresco” for tea and got something from the food court, can’t remember what, may have been pizza? May have been a curry thing that I either had tonight or tomorrow night! 

First night I wanted to see the Oyster Band. Being me, I did not want to move around (Teresa does) and so I am subject to whatever else is on. 

The main venue is the Bellstone, it is a massive area and they have some “good” disabled space however it is RIGHT at the front and in front of the main speakers and STUPID loud! Nothing further back, even my noise cancelling headphones were overloading it was so loud! 

I did not get on with first group (Mankala). Grace Perry was ok (a protest singer) and the Oysters brilliant. All old familiar tunes but still fun. IO was falling asleep on the buggy all evening. 

Back at van 12.30pm and crashed, I woke once during the night for the loo and once at 6am and dozed till 7.45am. 

Saturday onwards will be in next week’s blog. 

Postscript 

I don’t know what happened to my body after the dentist visit but it was really unpleasant and did not clear up for some days. 

The scan results were as good as they can be, almost anti-climactic, but trust me, we feel a lot of stress before getting them. 

Long may stable last, though as more up to date blogs reveal, the road is never smooth. 

The Bean, Pendeen09Sep-2019 

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