Letter from the North

Disability in Falmouth, the Coastal path, Cancer and DIY, and Angelique is festival ready – 12-May-2008

I’m so late posting the previous week’s blog that this weeks is ready and so here are two weeks in one, sorry it’s a longer read. 

Sat 28-Apr-2018  

As I said last week, we had decided to go to Falmouth today. Because it’s a bank holiday and disabled parking bays are hard to get into, we (me 🙂 ) decided to leave nice and early. That worked, there were plenty of spaces to park, BUT, if you want to be close to town – and what disabled person doesn’t? – then you are stuck with a parking limit of 4hrs when in fact you need longer than able body people to sort things out at the start and end of your trip! Hurumph…. 

Subsequently (after our trip was over) I found the Falmouth Town station car park which is a long stay with disabled bays and not much further out, but it is small and I’d not like to try to find a space later in the day.  Still, noted for the Falmouth shanty Festival I’ll be taking Teresa too in a month or two.

Anyway, there we were parked and off we went for our day out, me on the Lawnmower and Teresa walking. 

Some of the kerbs in Falmouth were rubbish for me, and many shops clearly do not want my custom as their entrances had steps and often when they didn’t, they’d placed A-frame signs on the pavement, in one case completely blocking the doorway. Teresa reckons she moved 3 or 4 of these to give me access.  

Even having gained access to the shop, it’s not easy. WH Smith’s is typically appalling. All the branches I have been to recently have the same basic layout i.e. an especially narrow aisle for the magazines with racks full from floor to ceiling. It is hard enough, when able-bodied and on foot, to see all there is when there is so little space to stand back and see the top and bottom! Imagine trying to get to the magazines in that narrow area when riding a lawnmower. I did, and whilst I could just about manoeuvre, there is no way I could see or access half of the racks. As a major high street chain, you’d think they would try harder. I’m lucky, I am more mobile than many wheelchair users, but even so it was awful. 

This problem was repeated in every shop I could gain access to. 

However, Café Nero was quite usable 

So, in we went and I had my ‘post Cancer pills eat’ there. Teresa was a bit disappointed, she likes their coffee and in the past, has really enjoyed their almond croissants (only beaten by Gloucester services) but the croissant was less almondy, a bit dry and half the size it used to be. So, she had a bit of a grump… 

After that Teresa wanted to go down to a charity shop next to the pier where all the ferry boats run from. I left her to the shop (which I couldn’t get into) and explored the pier. I had a lovely time with easy, level access, the sun on my face the breeze in my …, oh I don’t have hair and was wearing a hat, but you get the idea. I felt fantastic and just sitting on that pier with ease of access was the highlight of my day. I couldn’t have got onto any of the ferries but hey, it was lovely. 

Teresa joined me and I drove to sit next to her while she settled down on a bench to enjoy the view. It was the nicest time I’ve had since the accident. 

We then started to wend our way back to the car park, leaving enough time to look in at the Celtic Festival. 

We would have tried to have lunch in Falmouth but virtually nowhere had access and our four-hour parking limit didn’t allow enough time. 

Your loss, Falmouth 

We had go down one of the roads to the harbour area to get to the “Celtic Festival”. We suspected it would be a bit of a damp squib, which it was, disappointingly so, glad we didn’t go to Falmouth especially for that! 

Getting back up that slope to the main street was almost impossible. The scooter needed maximum power and tripped out it’s battery just before the top as it was working too hard. There I was, sat in the middle of a vehicle access and on a steep slope and nowhere to go. Fortunately, I knew where the reset switch was (Teresa had no idea, but I’d checked the scooter out very carefully, thanks obsessive autistic!) and made it to the main drag. Phew, there are many parts of Falmouth I just can’t reach 🙁 . 

Once we got back to the car park, Teresa wanted to take a video of me on the scooter. As that area of the car park was quiet, I repeated my approach. A link to the video will come when I work out how to change the orientation, so you don’t have to have your head at right angles to see it! Accessibility is all 🙂 

Sun 29-Apr-2018  

This was a DIY day. I re-arranged the end of my office so that we could move the lawnmower as it’s nearer the front door and involves less carrying of heavy parts to the car. 

I fixed some lights in kitchen, three out of the nine ceiling lights were on a two-way switch, the other six on a single switch. Shortly after we moved in, the two-way switch lights stopped working and have been like that ever since. I decided to test my shoulder and pull down each of the three light fittings and see if I could work out the problem. 

I don’t know who did the wiring in this house, but I’ve never seen a two-way switch circuit like it and there was something up in that ceiling that was part of the circuit that I couldn’t see or reach. However, I found loose wires in in the second unit, re-fixed them and it was all working – yeah, got to love the electrics in this house. Going to replace the unit I broke getting it out, also the other two with fire-rated units and then we are good to go. Another outstanding DIY task on Teresa’s long list sorted. Clearly getting cancer is good for the house! Or, I am well motivated to fix as much as I can before I no longer can, a sad reason, but not surprising. At least Teresa benefits. 

Then the pole (broomstick) for my clothes in the temporary wardrobe I built before the accident broke, dumping all my clothes on the floor. I did wonder if it would cope as it has always “bent” but it’s been fine for 6 months. Then suddenly it went and I found it dead in the morning. I have some metal conduit (for external wiring) in the shed that’s been with me for 10 years, I guess, and I moved it down here to Cornwall (from my house near Cambridge) as I knew I would need to use it when I had time.  

I cut a length off it with the mini angle grinder and cutting disc (from the blinds, last week) and like a knife through butter – well a blunt knife through cold butter – but a few minutes and done – it’s the same size as broom handle and went in fine – needed a little precision adjustment with a hammer, but no prob 

This is as close to being “manly” as I get and it’s all visual, underneath those overalls it’s cami and knickers and a dress! 

I then made loaf of bread, one fith seeded flour and four fiths ordinary strong white, to see if can get some texture in the bread. 

I then made some more meatloaf sandwiches (using meatloaf left over from last time) plus some cheese ones. 

Flaked out and in bed by 7:30pm! 

Mon 30-Apr-2018  

Teresa has wanted to try the “new” (refurbished) Godolphin Arms in Marazion for ages, it also comes recommended by my daughter. Teresa suggested calling in on our way back from Falmouth and I did try to get to the closest car park but of course, being a bank holiday, it was chock-a-block. So, we went home.  

On Sunday I decided that since it was a nice weekend (on the South Coast that is, on the north coast in Pendeen we were embedded in fog all bank holiday weekend – pretty typical!) that we could try another of Teresa’s “wants”, a walk from Penzance Harbour Car Park to Marazion for a meal at the Godolphin. Well originally it was a walk to Perranuthoe but there’s no way I can do that now so Marazion seemed a good compromise. 

There was no chance of me being able to walk it, so, I decided to see if the Lawnmower could manage it. I walked the whole route using Google’s Street view. I couldn’t check out all the hard path surfaces on the footpath but it looked OK. We would have to switch to using the road just outside Marazion but the pavements looked OK, apart from needing to cross the main road twice – once right to left and the second left to right. Apart from the speed of the traffic the first looked OK with drop kerbs. The second did not – there was NO drop kerb on the right-hand side. That would mean manhandling (well woman and non-gendered … handling) it or driving on the road for a long way to find a drop kerb – out of the question given how stupid the traffic is. But I was sure we’d manage somehow. 

Google estimated to be an hour’s walk; I guessed 1.5 hours for me but in the end it was a tad over the 1.5 hours and we should have allowed two hours for the three miles! 

Anyway, off to the Godolphin on the lawnmower we go. We parked at Harbourside in Pz and used the JustPark app to pay. I did not realise it at the time, but I paid for Teresa’s car not Angelique (oops). 

Oblivious to this blip, we got the lawnmower on the road and headed off to the coast path that starts behind the railway station. 

At first no problem – nice smooth tarmac, however after that it degenerates into sharp stone on a solid base. Fine for walking, not bad for bikes, rubbish for Mobility Scooters. It was Ok, but I had to travel very slowly and not that comfortably. Eventually it smoothed out a bit and most of the stones cleared and it wasn’t too bad. 

When we got to the area near the Long Rock bridge over the railway line, the surface changed again. They had laid these concrete slabs with holes in them that I suspect are meant to fill with sand and provide an “invisible” surface. You see the sort of things in car parks where the holes are filled with soil and grass and you get a hard-standing grassy area. Anyway, the holes had not filled – it was AWFUL to try and travel along. I had to use the edge where it was smoother but that resulted in me travelling at a crazy angle. I wasn’t at all happy, it would have been so easy to make that path work for people like me but they hadn’t 🙁 Probably disabled people are not supposed to use the path – there you go problem solved, say we can’t use it then you don’t need to make it available. Those three miles are well within the capability of modern scooters and a view to die for, if only we could get to see it! 

Still that bit wasn’t too long and we were soon back to stones, phew! But, without Teresa to run ahead and check it didn’t last long I would have had to give up and abandon the journey 🙁 

Once we arrived at the first Marazion car park (Folleyfield) we had to switch to road and yup, crossing that road was crazy, in a mobility scooter doubly so, downright scary. Still, with Teresa’s help we crossed and yes, the second crossing had no dropped kerb on the right-hand pavement and yes, we did have to man handle the scooter. Fortunately, someone stopped and helped because fully assembled it is very heavy. We did manage on our own on the return journey but ONLY because I am still strong in a static position, if I wasn’t, that would have been impossible. Is it really so difficult to put in a drop kerb? Ah, but if disabled people aren’t supposed to use the pavement then no need to do it, brilliant, don’t know why I am complaining! 

Anyway, we managed, we got to the Godolphin at 13:05, having booked the table for 1pm – so it took just over the one and a half hours. 

There was a bit of fiddling to work out how to get to where they had put our table (despite telling them I had the scooter when we booked) but they sorted it and up I went in their wheelchair lift and they let us leave the scooter at the top and I could walk to our table which had been moved to the open veranda 

I have to say that the Hotel staff were brilliant and incredibly helpful. That wheelchair lift is tricky to get onto and off as it is tucked in a corner off a narrow passageway, but it is doable and it’s great that it’s there. We saw more than one wheelchair and pushchair take advantage of it. Full marks for that. 

When we sat down at our table I checked my email and that’s when I realised I had used the wrong registration number at the car park. I panicked. I suspect many would have shrugged their shoulders but I can’t do that, so I paid for the right car from the time till we would return and used their app to send a message explaining. Hopefully there won’t be a ticket and I’ll get a refund, time will tell (it’s now Thursday and not heard a thing, oh well). [Editors comment], Just Park have emailed me to say that Cornwall Council have refunded the £4.50 extra I paid. Good for them). 

Lunch at the Godolphin was OK. Not gourmet (thought Teresa had a lovely seafood soup) more what I would call upmarket pub food. However, Teresa highly recommends the Tangerine Gin, well she would, I was driving 🙂 … 

Tue 01-May-2018  

Today was just my regular day in the office in Penryn followed by a few hours writing in The North followed by a curry. I was tired, but not wiped out. 

Wed 02-May-2018  

Just a day in the office in Pendeen. 

I like this “just a day” lark. 

Thu 03-May-2018  

Got a letter today and all I could see on the top of the letter was something about being guilty and punishment. I immediately panicked that it was to do with my parking mistake (autistic hair-trigger adrenaline rush set my heart racing) however it turned out to be a notification that the van driver who smashed up me and Blossom (my Landrover) has pleaded guilty to “Driving without due care and attention” and been appropriately punished. 

It doesn’t do anything for me, but it’s nice that the Police and Magistrates Court felt that the accident was serious enough to successfully prosecute the driver. 

After that I put a loaf of bread in the bread maker – this time two portions of seedy flour and three portions white bread flour, we’ll see how this goes (I like it, but will try three portions of seedy the next time). 

The new down-lighter fittings for the kitchen arrived today. The new ones are earthed and fire resistant unlike the old ones which were neither! 

So, once I finished work for the day, around 4:30pm I decided to get them fitted.  

Fitting was tedious but uneventful, my right shoulder gave out as I finished the third light, working above shoulder height on a ladder is tough on the shoulder but great physiotherapy. 

As soon as I was done I made the sandwiches and then stopped. 

Interestingly, I was not shattered, indeed even after tea at 8:30pm, I was if anything “hyper”, that manic state an over tired child gets into that some parents think means the child is not sleepy whereas it’s quite the opposite. 

Anyway, I recognised the state and settled down into bed on the sofa, watched the Antiques Road Trip with Teresa – something we do every night and either I see the end or fall asleep and Teresa tells me the result. Tonight, I saw the end but I have no memory of what Teresa watched afterwards as I clearly flaked out. 

Fri 04-May-2018  

A normal day of work. 

Many years and one Teresa (wife) ago, I did all the cooking and one of my favourite recipes was a Stilton and Potato Risotto. It also has chillis and loads of rosemary. An unusual risotto as it has far more potato than rice. But once It has matured it’s really scrummy. Well I think so and the family back then did. Teresa, well she’s a tricky kettle of fish to cook for, VERY fussy and I knew this risotto was going to be a tough sell, the potato is cut into very small cubes (around ¼”) and served al dente (just slightly crisp) or what Teresa calls ‘under cooked’. So, I knew I was walking a tightrope to have them how I like them and she could cope. 

In the end I failed, but that was not really a surprise. She has eaten it though, so I can’t complain even if it’s not something I’d make for her again. 

Main thing is that it takes time to mature – 2 or 3 days, so though I made it this afternoon, we didn’t have it till Monday. 

Quite a time-consuming dish to make as the potatoes take a long time to dice so small, still I always think it’s time well invested.  

Postscript #1 

All that gadding about in Falmouth and Marazion used up a lot of the weekend, so not as much DIY as planned and so Teresa’s blind in the annexe will need to wait till next weekend, however she seemed to really enjoy both days and I have to say I really enjoyed her enjoyment. 

I know my mobility limitations are not bad, that I can walk for some distance albeit my feet are very painful due to the cancer drugs, and I get fatigued incredibly quickly. Yet the unwillingness of Cornwall Council and many businesses to make places wheelchair friendly is appalling. It is far worse for those with less mobility than I have. 

I already fight on Autism, Gender Diversity and Cancer Care, now I have to add mobility. 

I am right royally pissed off that I have to fight, how can we as a society have such a disregard and lack of respect for difference in all its forms? 

Sat 12-May-2018  

Teresa is at a singing workshop today, so I am getting on with the myriad of stuff I need to get done. 

Because I have to pace myself regarding my job, which is a lot easier working from home, it does often mean I need to catch up some hours over the weekend. This morning is no different and I have 3.5hrs to catch up. 

So, work in the morning. 

Once done, I made meatloaf with a tuned version of the recipe I used last time – MUCH nicer, looking forward to trying in sandwiches. I’ll make them tomorrow. 

Once Teresa got home we went out in the annexe to start the woodwork for mounting the big blind. We got all three pieces cut but I was too exhausted (Teresa said pale) and stopped – that was me for the rest of the day! 

Sun 13-May-2018  

Teresa is at the singing workshop again today, but I’m caught up with work so it’s other jobs. 

Put loaf of bread on to be ready at 12:30 

I drove over to Firehouse Campers to agree the electric work we are having done an Angelique to get her ‘festival ready’: 

  • Two leisure batteries plus DC-DC Charger 
  • Compressor Fridge 
  • Inverter to let us charger the mobility scooter while driving (it’s charger is 240V) 

Got back, had lunch and put the bread on a cooling rack for later. 

The sun was out so I decided to try putting up the new awning to see how it fits against Angelique. I was supposed to wait for Teresa to do this, but the weather was fine so it looked like a good time. 

Well, I got it up, because I never intended to peg down the base or put up guy ropes it was never going to be perfect, I just wanted to see how to do it and basically how it fitted before we did it for real on a campsite in front of others. Also, as it would usually be Teresa doing the work, to conserve my energy, I didn’t want to be working it out on the hoof as that way lies friction.  

So, it works, I need to do something about fixing the link between the awning and Angelique, she has no gutter rails or anything else to fit it to, so at the moment there are just two storm straps and the centre part free to billow in the slightest breeze. Time for google methinks 🙂 

Now I needed to take it down, well I got it deflated (it uses air beams not poles) but I found myself in that fuzzy, buzzy zone just prior to fainting. I stopped, sat down, then went into the house and waited till Teresa got back. 

After an hour or so’s rest, and with Teresa on standby, I finished packing it all away. Phew, though it is clearly a one-person job to put up, unless that’s all I do that day (and the next), it’s not me. Sorry Teresa, I’ll not be taking on that job (as I used to do when we had a MUCH bigger awning on the caravan). 

Yet again this blasted disease and its treatment limit what I can do. Still, the whole point of the van was for something Teresa can do on her own when I’m no longer able or indeed around – cue for tears from Teresa when edits this, sorry Pet xxx (yup she says, there were) 

Then I made the meatloaf sandwiches and they are very nice, I like this new meatloaf, but that’s it, I am done in! 

On a different subject, this weekend Teresa and I have been having a debate regarding a friend of ours who died recently. Teresa has known him a long time (me less so) and there was a part of her, and of me, that really wanted to go to the funeral. Trouble is, it’s down near Croydon and it would be a massive undertaking for us. I know I went to London for the Lanyon exhibition, but that means I also know the impact it has on me. So, in the end, we decided we wouldn’t go and contacted said friend’s son with our apologies. I think everyone understood and they were well supported without us.  It’s so hard that we have to take decisions about what I can and can’t do. Another example happened next week on Wednesday 16th May

Mon 14-May-2018  

Full day of work and then put up mirror in annexe bathroom at the end of the day but that’s it, the leftover fatigue from yesterday is still there. 

Tue 15-May-2018  

Off to the office Penryn. 

We are going out this evening so I know I need a nap on sofa when I get home. 

Went to a concert at the Acorn in Penzance, Gigspanner (http://gigspanner.com). It was a good evening but just a bit too much of a Peter Knight showcase for me, and sometimes a bit too clever for its own good. That said, it was nice to hear some interesting arrangements, it’s just sometimes less is more and Peter Knight was usually more is better, oh well, most people there, including Teresa, liked it; horses for courses. In my case it doesn’t help that my brain is slow in processing new things and never having heard their music before it was overwhelming – too much information at once, but even so, I love music and heard a lot over the years so I did get what they were doing, it was, as I said, I think, forgetting that because you can doesn’t mean you should.  

Wed 16-May-2018  

Just a day at home in the office working. Teresa was very aware that this was the day of her friend, Bob’s funeral and made a point of messaging her friends. They all used to go on holiday together (before I came on the scene) so have lots of memories to share. 

Today I also got a message saying that my Mum was in hospital with a broken hip. Now, my mum has Alzheimers and is in a nursing home (up in Doncaster where she lives with my sister) and I had to make a decision as to whether to go up and see her. Indeed I’d already had the conversation with my sister before she fell. The reality is that Mum wouldn’t get any benefit from seeing me, if she even recognised me and the trip from here to there is such a strain on me, it has to be justified. The same question crops up after she broke her hip, the reality is there’s nothing I can do, so I stay here down in West Cornwall and worry that the next phone call is the she has died. Now, I’ve always been of the opinion that as long as my mum lives (and she is ninety this year), there’s a good chance I’ll be able to get close to her age (my Dad was in his 80’s when he died and he’d smoked all his life). This renal cancer put paid to that and it now feels like it could easily be a toss up as to whether it’s me or mum that goes first and that’s hard to contemplate.

So, yes, I look in excellent health from the outside, yet I can’t go and visit my Mum in hospital. Before this cancer, I’d have driven to Doncaster, (370 miles), visited Mum and driven home again, sleeping in the car at a Motorway services! Not any more, it REALLY hurts that I have to be so selfish, but for Teresa, my children and even for me, I have to limit what I try to do, it’s really no fun.

Thu 17-May-2018  

Another day of work, but not a full day, not sure why, I wonder if the exhaustion from Tuesday is catching up on me? 

Fri 18-May-2018  

I am in the office, working as usual, Teresa is at Dawn Chorus (singing) and then has all sorts of other stuff to do so I won’t be seeing her till 5pm or later. It’s days like this when working from home, on my own in the house, is the hardest and the isolation most felt. Particularly so as by the time Teresa gets home I will have hit my fatigue wall. Oh well, I do have four cats here with me, but they will ignore me until Teresa gets home, love em, but I just don’t have the right magnetism – they all prefer Teresa. Ferret would have appeared, but he is long gone, dead longer than he was alive 🙁 

Postscript 

I do get more done than I used to (post-accident) but there are clear limits and I cross that line at my peril, or at least I must accept the cost and pay up if I do cross it. 

All the same, we are almost there in getting Angelique ready for our first trip out at a festival and having learnt what my limitations are and how to pace myself, it should work out well, fingers crossed. 

The Bean, Pendeen, 19-May-2018 

 

 

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