Month: May 2018

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 

 

 

DIY, bones mending, cooking and diarrhoea -28-Apr-2008

Sat 28-Apr-2018  

Well at last my DIY skills, at least in terms of capabilities, are returning. I have increasing amounts of mobility (and strength) in my shoulder. I have problems with “shaking” in my hands but it’s relatively mild and not a problem unless I am trying to do really fine motor control tasks (e.g. soldering, electronics). The shaking is probably due to the cancer drugs (one of many side effects), but could also be a consequence of the accident i.e. damage to right arm and resulting over stress of left one; time will tell as the accident damage (slowly) heals.  

So, today I put up two blinds, one in our newly re-decorated bathroom and one in the bathroom in the annexe. Both required cutting the main metal structure to fit to the area of woodwork available in the window frame (less than the width of the window). With my new mini-angle grinder and thin metal cutting disc it went well. A lot of sparks (of hot metal) so I needed to wear my “manly” overalls (over my dress) and I needed to get a full-face mask/ear defenders combo (already had the defenders but needed the full-face mask and easier to wear as a combo. Teresa had ear defenders and turned away to avoid the sparks whilst holding the blind in position for me while I cut. There is an action shot of this in action elsewhere next week. 

For both blinds I needed to cut more than once as the dimensions were critical and cut twice is better than cut too much once! 

Fitting the brackets was easy peasy – albeit uncomfortable, leaving me with soreness in the shoulder joint. 

But now I am exhausted and far too tired to look at the easiest frame (no metal cutting) but also a very large blind for a very wide set of windows in the annex. 

Sun 29-Apr-2018  

Hmmm, up bright and ready to get on with the final blind this morning, but the available wood to mount the big blind is not strong enough to support the weight. I need to construct a wooden frame that will take the weight and be able to resist people’s over enthusiastic use of the blind which could pull it off the wall and onto them!  

Timber designed and ordered. Suitable fixings also ordered. Hopefully next weekend I can make and fix up, then Teresa can paint the new wood to match the existing paintwork, then putting the blind up is just a matter of lifting it onto the brackets and job done! 

Despite not doing much, I’m still exhausted. I hate that my capability (after the accident damage) is returning, but my stamina is so weakened (by the cancer drugs). 

Mon 30-Apr-2018  

Hopefully my last fracture clinic today. As reported recently, I am now trying to do these routine visits on my own and let Teresa get on with her normality. The visit wasn’t scary but manoeuvring Angelique around the tight (disabled) car park at Treliske was of concern, she is a big old bus and the turns are tight and narrow. 

The clinic went well – here are my Facebook comments: 

Me: Bean in coffee shop at Treliske having cup of tea, taking cancer pills and reading Kindle prior to what I hope is my last fracture clinic appointment. 6 months since accident! 

Oh, and flying solo for the first time. Teresa is at home 

Now waiting for X-Ray. All very familiar, this must be the 5th visit because the bones heal so slowly thanks to those cancer drugs. 

Teresa:  So familiar I feel as though I am right there with you …. 🙂 ???? 

Me: X-ray done. Waiting to see Dr. Had to fill in a “customer satisfaction” form and it had boxes for male, female and transgender. That’s a good step forward. [Editor’s Note] The Transgender community would not view me as one of them as I do not think I was born in the wrong gender. I just consider myself as not bound by traditional binary gender labels for how I dress or behave. But still, I used the Transgender box because it best describes me given the choices. A bigger step forward would be to forget the whole notion of needing male/female except in purely biological contexts. 

And you are here in spirit pet. We have spent too much time together in this place xxx 

And last visit done. Lots of growth. Still long way to go but they don’t want to see me again. Yeah!!! 

I got to look at the x-rays in detail and it wasn’t just a break (in the collar bone), there were two pieces of bone broken off that were floating around in there too. 

Off to Angelique and then the office in Penryn. 

So far, it’s a good day even though I am shaking … 

Teresa: I have to say my heart missed a beat with ‘lots of growth’ as there’s another area where ‘lots of growth’ is the last thing we need! 

Me: Yup, probably should have said bone, but to me it was obvious, theory of mind anyone?!  

Now at the office and time for food as its 1hr since cancer meds. 

Manoeuvring in the car park was tight, but Angelique managed well and so off I went to work in Penryn for a few hours and then home, exhausted as always :-). 

My feet continue to hurt and my current slippers are just slip on sandals that are old and have very hard footbeds. So, I’ve bought some nice soft slippers: 

 

What a surprise about colour and style, not sure how I managed to not buy some bland “manly” slippers, must have been finger trouble on the Amazon order. I wonder if I should return them or just keep them? 

KEEP THEM BEAN 🙂 

Tue 01-May-2018  

Diarrhoea is back, another bad day, do you want details, no, I thought not, boring, but it’s here! 

Today I made a meatloaf. The original recipe was inherited from my first wife (after she left me). I’ve not made it (I don’t think) since she went, thirty years ago, and I never made it then, she did. So, I had to adapt the quantities into something I could use. I reduced the quantity to a third so it made a sensible amount for a trial run. It seemed to go all right, a bit too strong in flavour so I need to adapt some of the quantities, e.g. I think there’s too much dried herbs and I used the wrong proportion of liver to pork meat, but I’m happy with the first attempt. 

Teresa is out all day, shopping in Truro for a sofa, bedding and other bits and bobs ready for letting the annexe to holiday makers. 

Wed 02-May-2018  

Today I made a loaf of bread. I’ve still got sandwiches in the freezer but wanted to make meatloaf sandwiches while everything was fresh. 

So, loaf done by mid-afternoon and made the sandwiches. The meatloaf is definitely too strong on its own, but more diluted with the tomato chutney, bread and butter. 

I froze most of the meatloaf sandwiches and saved some to try for lunch tomorrow.  

Hmmm, the editor in chief – aka Teresa commented that the original version of this paragraph “does get a bit confusing and does go on a bit”. How dare she, well, OK, this is better than the original, at least I think so ???? 

After the cancer drugs have had their 1hr absorption period – around 11am, I am always very hungry and if I don’t eat I start to feel nauseous. So, I try to divide my lunch into two parts, half at 11am and the other half at 12:30. 

The meatloaf sandwich is rather thick and substantial due to the thickness of the bread (impossible to cut thin) and the thickness of the meatloaf slices (a quarter of an inch in old money). 

So, I only have one slice of bread made into a Sandwich for the combined repast. Unfortunately, that means my two “portions” are quarter sandwiches, i.e. half a slice of bread each. They look very small but are, I suspect, filling enough and I need to watch my weight as I’ve gone from drifting down to drifting up, not sure of the cause, but I need to return to slow fall. 

That said, a slow fall instigated by me is fine, a fall due to the cancer itself is time to worry – loss of weight is one of the key indicators of the cancer’s activity. For goodness sake, you can’t even lose weight without having to worry is it good or bad loss. 

Thu 03-May-2018  

“Normal” day’s work 

Fri 04-May-2018  

Teresa and I had planned to go to Falmouth on Saturday combined with another trip. The second trip was cancelled and so Teresa then didn’t think the Falmouth trip was sensible.  

That’s in my words, I know it doesn’t sound so bare a statement for her.  

I don’t like changes in plans, I really don’t like them at the last minute and I really, really don’t like changes without alternatives (Plans B-Z inclusive). So, we had a “discussion”, no fun for either of us, we took “time out” (eventually) and, as we always do, we put things back together and worked out what to do. As it happens we are probably going to Falmouth but ONLY because Teresa does want to, NOT because I wouldn’t let her change her mind (all too easy to do I am afraid – see the article on autism and relationships when I eventually get it published). 

Still, I was emotionally wiped out for the rest of the day. Fingers crossed for tomorrow. 

Postscript 

The gradual restoration of physical capabilities after the accident feels like it is being matched by a decrease in capability (primarily stamina) due to the cancer drugs. I can understand those who refuse to take the cancer drugs because they feel better without them. I would feel better without them. But, it’s a question of “for how long” and I’d rather more time at a lower, but acceptable, level of fitness than a short time at full fitness. I know there will come a time when that is no longer the case and that will be a tough call for both of us. Hopefully that’s a long way in the future, but this disease rarely grants you that much hope, oh well. 

Live for the day 

The Bean, Pendeen, 05May-2018 

 

 

Porthleven, Nachos, Blood Pressure and Poo – 21-Apr-2008

 

Am I really invisible? 

Sat 21-Apr-2018  

As part of the “do what Teresa wants” world I now live in (happily doing it, I might add!), she has wanted to go to the Porthleven food festival every year since we came here. I have usually been working up country and couldn’t go or down here for a weekend and not wanted to lose one of my two days at home on something I have no real interest in – yes, food and beer, NO to all those people! 

Porthleven was an option for her Birthday trip out, but she decided on the birds of prey (see last week), so I’d got out of Porthleven. 

However, I do try, so I said to her that, since it was a nice weekend, did she want to go there for a “day out”. Apparently, she did. Bugger, I was just trying to be nice, I didn’t want a yes! 

Anyway, it seemed like a good opportunity to try out the lawnmower (aka disability scooter) so off we went. I was stressed in so many ways: 

  • Not been to Porthleven before 
  • Not been to the food festival before 
  • Not parked in Porthleven before 
  • All those people 
  • Will the lawnmower work, have enough range, handle the uneven ground? 
  • Bet there will be a queue to get in… 

Well, there was a queue to get in, but everything else was fine and Teresa had a lovely day. Having the Lawnmower helped a lot, I could keep up with her and didn’t get tired – well I did, but it took hours not 30 mins! 

The biggest problem I had was being invisible. There is a thing the general population has with wheelchairs, they just can’t see them. I’m not exactly hard to miss and on the scooter not much shorter than Teresa, but they walk into me, across me and in general they have no awareness at all.  

One thing experienced with wheelchairs when I broke my leg, is how protective Teresa becomes. On this occasion she’d say, ‘I’m going to be big’ and walk in front of me, arms slightly out, to forge a path. What she couldn’t see was the way people made way for her but, once they’d passed, flowed into the gap between her and me as if I wasn’t there at all… 

I have to say that the Porthleven Food Festival wasn’t as wheelchair-friendly as it could be – some uneven ground and a few places, where power cables crossed the thoroughfare, where the “covers” were too high for my small ground clearance. However, people (complete strangers) just muscled in and lifted the scooter over for us, so it was fine. 

So, we had a lovely day. It’s not my cup of tea, never would be, but it IS Teresa’s and I got a lot of vicarious pleasure watching her enjoy herself, and that does make it worthwhile. She has to put up with my autistic nature, so it’s nice when I can give her something in return. 

It was certainly a gloriously sunny day and I was wearing a sun hat – and the number of times we were referred to as ‘ladies’ was amazing! I think the hat covers my bald head and the scooter hides my height and size, and so they just see a (not very attractive) older woman.  

I did get one treat. I used to visit the East Coast of the US (New Hampshire) twice a year for work and got to like two things 

  • Fish Chowder 
  • Nachos 

Teresa has tried to make the Chowder, but my taste buds will just not handle fish ???? 

At Porthleven there was a stall selling Nachos with all the trimmings and pulled pork. Perfect, I can do pork and I declined the Jalapenos (which are too much for my sensitive mouth now) and I had all the rest, lovely a real treat. 

On our way home, we popped into Sainsburys and although my hip was stiff and my feet a bit sore, I managed the walk around the shop no problem, wouldn’t have happened if I’d been on my feet all day at Porthleven! 

Sun 22-Apr-2018  

Some work and then crashed – not surprising after a day out yesterday. Well, not surprising, but rather annoying 🙁  

Mon 23-Apr-2018  

A normal-ish day. Well I thought it was but I’d had a headache all night and it was still there this morning. Because I have to keep a close eye on my blood pressure (Pazopanib often increases it and it does do so in me). There are two key bodily effects – feeling faint is an indication of low blood pressure, headache signals high. So, I thought I’d better check. Yup much too high and diarrhoea as well. I suspect I’m being hit by a spike in Pazopanib side effects – not sure why, no obvious cause, so I’m worried, but not panicking 

It’s all very odd.  Before the whole cancer thing cropped up, 120/80 was what my BP drugs were trying to achieve  

Since the accident and Pazopanib, I’ve generally been on the high side and the drugs I take for BP have increased to get it back to around the 120/80. A few weeks ago, it suddenly dropped down to the region of 100/70 and so one of my evening BP drugs was stopped. For two weeks it stayed low and we were considering another reduction. 

Today it suddenly spiked into the more than 160/More than 100 region. Interestingly, at the same time my heart rate dropped from its usual 100+ to mid 70’s – unheard of for me! 

This was at 4.00 pm and it was pointless talking to GP or NHS Online or even casualty. None of them have any idea about Pazopanib or my normal BP/Heart rate patterns. I will talk to the cancer nurse in the morning, if I’m still concerned.  

If my BP was consistently over 160/100 then I would have contacted someone, as that is getting up into dangerous territory. 

So, I took the “deleted” evening pill, monitored the situation, and by the morning (Tuesday) it was close to a normal. 

Tue 24-Apr-2018  

I didn’t go to the office today, although I’m still working (from home) but here I can stop and rest at the drop of a hat and keep a close eye on my BP. 

Just as well, by lunchtime the BP was going crazy again. I rested in the afternoon. By now, as well as the BP, I had chronic diarrhoea again and needed to take Loperamide (Imodium) twice in quick succession. However, by the evening, the BP is coming down – albeit slowly 

Wed 25-Apr-2018  

BP is almost down to “normal” this morning – better than yesterday morning, but the real measure is at lunchtime since that is 2-3 hours after taking Paz and that I suspect, is when it’s at its “max” driving up the BP, certainly seems that way! 

However, it was close to being back to normal at lunchtime, phew. 

The diarrhoea from yesterday didn’t seem to be a problem this morning, in fact a “normal” visit 

Thu 26-Apr-2018  

Spoke too soon, this morning we had close to “constipation”, that “spikey” feeling I recognise and yes, great, blood time. Only a tad on the loo roll, but there is blood, blah, always on the knife edge, that’s the trouble with severe diarrhoea attacks, stopping them can tilt you the other way. That usually happens the next day, but with my body, who knows. Hopefully my “care” this morning (in the “pushing” department) means that “smear” is all there will be, but I’m ready for disappointment later today without needing to panic. 

Told you the poo tales were never very far away 🙂  

Autism and Anger 

I made a loaf in the bread maker earlier and once it was done, it needed to be turned into sandwiches before it had a chance to dry out – happens a lot faster with home-made bread than shop bought – no additives to “help it” 🙂 . 

I also needed to make my tea, and was running late. All this started about 6:15pm. Teresa was also in the kitchen, rummaging in the cupboards, and dropped a jar that broke on the floor tiles. The bread was very soft and proving difficult to cut, the loud bang from the jar was (I think) the last straw and my body went into overdrive: massive stress 

This subject needs a separate blog on its own. If you are interested, and many couples with at least one autistic should be, please read this (LINK). The word to remember is “meltdown”. 

Fri 27-Apr-2018  

Hmmm, poo seems to be behaving at the moment. Yesterday that one trip was it, despite many signs suggesting it wanted more. This morning it did eventually (and reluctantly) do its doings, but again it was quite on the “constipated” end of the spectrum, no blood this time at least. I really don’t know what is going on. I don’t want to dial back the Ondansetron as it is brilliant for nausea, but it can cause constipation so maybe I need to try alternating days instead of 5 on 2 off. There is nobody to ask about this because there is no research, each of us is different and we each need to find the right drugs and the right ways to use them ourselves. Clearly self-medication is stupid and dangerous, but the application of common sense is not the prerogative of the medical profession and I know many aspects of my body and how it reacts to the drugs I take better than they do.  

Couple of hours later and things are “loosening up” and still blood free, so what on earth is going on? 

Even later, yet more normal poo, seems there is some catching up going on. 

I went over to the North Inn this afternoon to do some technical reading, stayed over there for tea and Teresa joined me for a curry. 

When I got home, oh yes, the diarrhoea is back – I was aware of it before the food, so it wasn’t that. Hmmm, my body and especially my digestive system, does seem to have a mind of its own. 

Oh well, Poo tales over for this Blog, I bet that’s a relief (double meaning intended) :-). 

Public Talk? 

Teresa and I are doing a session at the Penzance Litfest (July 4th – 7th) titled  

Saying the Unsayable – blogging without words 

Which will be about the challenges I face in writing this blog and how Teresa and I handle (or not) those challenges. 

I believe the session will be on Thursday afternoon (5th July), though that may be subject to change. If you want to come along, you would be very welcome, there will be plenty of time for Q&A (about anything) – so keep an eye on the PZ Litfest website.

Postscript – Blood Pressure panics 

You start to worry (panic) about high blood pressure at a sustained Systolic of 180 and/or Diastolic of 90.  

Below are some of the figures we keep for our record, what you can’t see in this table is that these are “averages” some individual readings were 160+ for Systolic and 100+ for Diastolic, but that was one or two readings out of seven or eight, my BP bounces around even over the space of a few minutes! 

The entries with a * against them are all taken around the same time. Because blood pressure varies during the day, comparisons are best made at the same time. I know what the pattern is for me and so the results at the other times are more meaningful for us than they seem to be from this table. 

You can see the peak on Mon (it may say 136/89 but actually I had a couple of reading in the High 150’s/High 90’s), which is when I took the extra BP pill and is still there on the Tuesday (these drugs take time to kick in) but is now down on the Wednesday after two evenings back on the usual regimen. 

And yes, my resting heart rate really is that high, always has been high, but interesting how it is inversely related to the BP! 

Date  Time  Systolic  Diastolic  Pulse 
13-Apr-18  17:10  111  77  99 
17-Apr-18  20:07  114  78  99 
18-Apr-18*  13:20  112  67  117 
20-Apr-18  19:30  119  81  97 
22-Apr-18*  13:00  114  73  110 
23-Apr-18*  13:00  136  89  89 
24-Apr-18  07:30  124  90  75 
24-Apr-18*  12:55  155  98  97 
24-Apr-18  14:30  130  86  91 
24-Apr-18  19:56  132  87  96 
25-Apr-18  07:50  113  73  103 
25-Apr-18*  13:13  122  85  104 

 

What happens if you worry about your blood pressure being too high? hmmm… How do you relax when you are REALLY worried you won’t wake up in the morning? Self-fulfilling prophecy? 

I did relax. Well, as well as anyone could in the circumstances, because I was pretty sure that the extra BP pill would do the trick, but it wasn’t easy. As for what Teresa went through, well you can guess! 

The Bean, Pendeen, 21-Apr-2018