Letter from the North

The Eagle has landed, off to Warwick – 20-Jul-2019

Going to bed, Part 1 (see next post for what happens next)

Yes, three weeks late, sorry, this is Warwick Folk Festival Part 1, part 2 will follow shortly

Sat 20-Jul-2019

Spent the morning making permanent the electric fixes I did last weekend to get some of our dead lighting working.

Totally exhausted, nothing else got done.

Do you know what day it is today? May not mean much to you (except for the TV going bonkers over the last few days), I was 14yrs old and sleeping in a tent in the back garden listening to a radio when I heard those words, actually I was sitting around the yellow Formica table that now sits in my upstairs office, it was the “one small step” I heard in the tent.

When I was diagnosed, 21 months ago, I feared I would not make it to the 50th Anniversary. I did, so many of them did not, including 1st man.

I was given 2-3 years, hopefully that is wildly inaccurate in a good direction, but I have had optimism taken away from me because optimism means I plan for a future that I assume I’ll be there for.

Now I live for today, we make some plans for the future, but in my heart, I don’t assume I’ll be there, so if I need it today then today I do it, whether it is altogether sensible or not.

Today is a very important day for me yet the world around me seems almost indifferent to the power of the event. It was always going to be big for me, spaceflight always has been, but this anniversary is much bigger today than it ever would have been.

Our wedding anniversary will be in another 10 days, yet another of those milestones I can no longer take for granted.

I graduate from my PgCert in autism studies in November. On almost every level possible it’s pointless attending. But on one level alone, “fuck you, cancer” it’s worth trying to be there and we will. I’ve written about this before, but when I was planning to do the PgCert, I knew I may not make graduation (still may not), when I booked on for the next two years to complete the MA, I realise that the odds are against me making it, but what’s the point if I don’t try?

Whether you read it here or not, I wonder and worry every day what the point of being here tomorrow is, because if there isn’t one then why go through the treatment and the waiting?

So, I look for reasons to keep going, Teresa and my children are a powerful force, but they aren’t enough because that time will come and that’s all there is (Al Bean, my namesake and the 4th man on the moon asked “is that all there is”). So, for me, the question is, what difference do I make today?

The MA is part of that, these blogs (and their surviving my death) are. Getting your head around this is not easy. Plan B is to bury one’s head in the sand until the day arrives when burying is all there is left. I know that works for many people, it just doesn’t work for me, so I get to “think”.

Sun 21-Jul-2019

Packed Camper Van ready for Warwick – or at least the major packing – included the solar panel (it will be its first outing).

Assembled Teresa’s chipper (for prunings from the garden) for her, she is so enjoying it:

Please note she didn’t like being told to wear leggings nor a flowy skirt and have her hair up. Not Health & Safety conscious :-).

But doing that wiped me out for another day

Mon 22-Jul-2019

Knocked up a new version (version 3) of the Frittata that Teresa did that started us down this Fodmap road. I’ve now removed cheese, or at least I was going to and I did add bacon to compensate, but Teresa managed to find Lactose Free cheese (but still dairy – from Arla same people as do my milk). I find I do like familiar flavours and though the cheese is expensive (about the price of a “organic normal cheddar) it does taste “right” and when so much flavour has been denied to you, all bits are welcome.

Will have that for lunch tomorrow, my taste test nibble today says I may have over done the bacon and it’s too salty – we will see, I am VERY sensitive to too much or too little salt.

Like everything else in my life, I seem to be on a knife edge!

Emailed work about my varying Blood Pressure as there is a “risk” that I could be hit by low BP in the office and “faint”. Seemed like the right thing to do, however it does of course trigger H&S, training (for the first aiders), …, and as a result I couldn’t go in to work Tuesday morning as I usually would.

I know I did the right thing, and I realise I should have expected the reaction as well – but I didn’t. They are a good employer so I needn’t be worried but other employers could use it as a reason to not employ me (on health grounds) which would encourage “untruth’ness” which I hate.

Tue 23-Jul-2019

So, working from home today 🙂 .

Wed 24-Jul-2019

Work plus final van packing, major diarrhoea attack so needed to take loperamide – these attacks are not common nowadays so clearly the new diet works, but they remain no fun at all!

Ordinarily it wasn’t bad enough to justify loperamide, but with an 8hr drive tomorrow, better safe than sorry (boy did I live to regret that!!!)

Thu 25-Jul-2019

Up at 4:30am, Teresa at 5am and we were off at close to 6am. As always, the van looks (and feels when driving) packed to the gills! Part of the problem is that our lovely bed base (4” thick foam divided into six manageable “cushions” just takes up space. However, when stacked it makes a perfect cocoon to protect the solar panel whilst it is in the van, it just takes about 1/3 of our room for carrying stuff – the buggy makes a big dent too!

Stopped at West Cornwall services as normal. I couldn’t eat but did take the cancer drugs and got a flapjack ready to eat in an hours’ time. Cup of tea for me, no coffee for Teresa, she slept all the way to here and expects to go back to sleep again

Next stop Taunton Dean Northbound, a place we always stop. No, Tereasa still asleep, so I keep going and she wakes up some time later so we stopped at Sedgemoor Services – about ½hr up the road. Still nothing happening in the bottom department, mildly concerning but to be expected after loperamide yesterday. Keeping fluid intake up.

The forecast today for Warwick is 34 deg but right now it isn’t hot yet – was positively cold when we left home.

Lunch will be at Warwick services as usual, so cup of tea for hydration and on we go, traffic cooperating.

Arrive at Gloucester – scorching hot, had lunch and a minty tea, replaced 1/3 of the water in the tea with cold water to make it cool enough to drink – in that heat we would have been waiting for ages for it too cool down.

As usually happens Teresa bought some meat sticks, she likes from there and I got a couple of Chorizo ones – last time around we checked they are safe for me to eat (BOY, were we wrong, but not for the obvious reasons – see next week’s blog!)

And on we go, getting to Warwick shortly after 1pm (opening time), the camp site is already pretty busy, I later found out that the gates open sooner but they don’t advertise, it looks like people have worked that out!

Still we found a spot, the heat is awful and not only have they moved where the loos are, the map they supply on arrival with where the services are is wrong and the water location has moved as well – much to Teresa’s annoyance as it was further away and hence further for her to pull the water container. I cannot pull these new (smaller) ones on the buggy, rolling resistance too high with the small wheels..

Still we got everything sorted quickly, the new tent works wonders and we now use a cover for the buggy instead of putting it into the tent which makes more space in there.

There was some cloud as we put the pitch together so not so bad as last year, but still pretty tough. I keep drinking and did so the whole festival and it was certainly passing through but …

In general, I would say that we were disappointed with the organisation of the festival – not only had we had a lot of hassle over getting Teresa’s “carers” ticket, the facilities were poorer. The only disabled loo was by the main marquee – a LONG way from the field we were camped in. In general, the disabled facilities provided by the festival were poor.

Once pitched up we went off for an explore and for Teresa to have a gin. I felt I wanted something close to normal food for tea and since “Moor & Coast” were there with their Whitby Cod, that seemed like a good idea since they did gluten free batter.

Mega expensive and not a lot of fish, deeply unimpressed and felt ripped off even for festival prices.

Oh well, off to the Ceilidh house for the evening concert a Folk Opera by Mick Ryan. Rather unrehearsed and somewhat disorganised but Tereasa felt that added a bit of “folksy” feel to it.

It was a pleasant enough evening but marred for me by three things

1) We were early so they did see me and arranged somewhere for the buggy to go (why can’t they expect a certain number (we later found out they did in the main marquee, but to not do so in any other venue was poor).

However, we were put at the back of the venue – why is it that disabled people are put “out of the way”?

2) I don’t know what the sound engineer for that building was doing, but it wasn’t his job as far as I was concerned. The sound in that building remained poor all festival.

As is often the case there is an obsession with low frequencies and in that room, turning them up just caused “booming” and distortion. I would have thought that was easily remedied (and I am not completely ignorant in such things).

As it turns out, this was a festival wide problem and in totally different venues (a marquee with no walls and a building designed as a performance venue) the same problem persists. I know the mixers were up to the job so it was the people driving them and the sound equipment being used and that’s just not good enough.

Folk festivals are NOT rock festivals, loud MUST be blended with audibility – it’s all about the songs for goodness sakes.

Oh well, rant over

3) The air conditioning wasn’t working – really, they didn’t think that it might get warm on warmest day of the year? Really? I think this was down to the school not the festival, but even so, …

And so, to bed and crashed!

Many trips to the loo for a wee during the night so well hydrated, however no signs of poo, not worrying yet, losing a day is not unusual after Loperamide, but that’s usually the case when I’ve had to take two, it was only one on Wednesday.

Fri 26-Jul-2019

Rained overnight so a bit of padding in the damp for those nightly loo trips, but not too bad this morning however although I had a lie in till around 8am, for Teresa it was 10:30 before she stirred.

So, washing, coffee, general getting up stuff and then off to the festival, trying the only disabled loo on the way, more in hope than expectation, nothing doing, …

I/we (Teresa came and went) went to a lunchtime concert in the same Ceilidh house as last night, with The Magpies and Trials of Cato. Now

1) Aircon still not working!

2) Sound still rubbish – we were to see the Magpies on the last night in the main arena – that had its own sound problems (including the ubiquitous bass issues) but the difference in the intelligibility of the voices was like chalk and cheese, something was definitely not right in this venue.

Trials of Cato were excellent. We first heard them at Gower last year and liked them then too.

There was a 1hr session by a band called Skerryvore for an hour in the Ceilidh house at 6pm, they were different but fun, much louder than the other gigs and of course the “turn it up to 11” approach worked much better with them, but still – hearing the voices was a challenge.

For the first time I wore my noise cancelling headphones – they take out a lot of the low frequencies and whilst they dull the higher frequencies (voices) the voices were much clearer without all the “mud” from the lower frequencies.

For the evening we went to the Bridge House Theatre to see more acoustic acts and things change a bit

1) Disabled access even worse, you end up getting “squeezed” in and they seem somewhat surprised to see you! For an expensive public school, you’d think they would make better disabled access?

2) The sound was gentle re-enforcement and SO much better, first time you could easily hear what the artists were singing. So, it can be done! I don’t recall who were on, rather curates’ egg for me but finished off by John Kirkpatrick who has oodles of stage presence and skill.

Even more exhausted than yesterday (if that’s possible) however once back at the van things fell apart rapidly and it was well gone 2:30am before we got any sleep, more on that in next week’s blog – sorry for the cliff hanger but it all occurred after midnight and so by the rules of blog …


I understand, most of the time folk music is unamplified and there are two sorts of amplification

1) Sound re-enforcement, adding just enough amplification so everyone can hear but retaining the acoustic nature of the performance

2) Loud for fold rock type acts

I’m fine with both (there is also a whole mire of in between too but we’ll skip over that). I’m always up for some loud exciting music, plenty of bass – go for it. My old ears require me to wear headphones to protect them, but yes.

However, I don’t know what the sound engineers were doing but they seemed to think that acoustic performances needed the bass end so loud it resonated and boomed over the audience. They also failed to ensure clarity of voices so you could make out what was being sung.

I hesitate to use the word but I have to question competence. It was the worst I have found it at Warwick this year, but not by a lot, last year they didn’t have a marquee and all the concerts are in the big hall they usually use for Ceilidhs and last year the sound in here (when it was the main venue) was as bad as this year (when it was a minor venue), and I am sure it’s not just down to the venue, after all turning down the overall volume would help almost all their issues, but the desire for “loud” seems to ingrained.

Audio matters to me – it’s my job as well as my passion and I don’t like to see (hear!) it done badly.

As for poo, oh boy we are only just getting started!

The Bean, Pendeen, 28-Jul-2019

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