Letter from the North

Poo, all sorts of poo, cooking and yes, we do get out and have a good time too :-) – 15-Sep-2018

 

Just packing up at The Old Coastguard 

Sat 08-Sep-2018   

I quite wanted a day out today, it being the weekend, but after the CT scan yesterday and my reaction to the contrast they inject, we decided to play it by ear. As it turned out, I did wake in time to go out and felt OK, but didn’t have the heart to wake Teresa early, so left her asleep 

Poo continues more constipatory! 

I rather fancied something pasta based for tea and I felt like cooking, and I wanted something “simple”, so I suggested to Teresa “spag bol”, and then I remembered a ragu recipe in Delia Smith’s Winter Collection, which is anything but simple, but I recall (it was over twenty years ago) that it was very tasty. So, a trip to Sainsburys to pick up the ingredients seemed like a good idea. 

Teresa had a good lie-in and I knew the ragu was time-consuming so just before we went to Sainsburys I found an online recipe for chicken stroganoff that I fancied which would be quick to make for tea tonight. Yes, I am in mega cook mode, I love cooking but finding the energy and motivation can be difficult nowadays.  

I (and we) keep trying to get a mushroom stroganoff recipe that works (for my taste buds), so far without success, but I still wanted to and this one looked quick and easy, so, … 

At Sainsburys I managed walking around the store but had to go and sit down while Teresa did the checkout. I zoned out till she arrived such that she had to get my attention and give me a bit of time to come around (bit like waking a Windows computer from hibernation 🙂  

Home and lunch then my afternoon nap. 

By the time I got going it was 4.00 pm and I felt I could handle cooking the meal for the day – well the stroganoff was supposed to be quite quick (indeed it was). I was in zombie mode and fortunately Teresa came through after a while and kept me company, doing some of the prep work too which saved me time. We both know I can’t do cooking in the afternoon, I hoped that after my nap I could, it turns out I couldn’t, so lesson learnt (though I hate the lesson). 

The chicken and mushroom stroganoff was fantastic, full of flavour and I really enjoyed it. Teresa had already planned to have a crumble and custard tea (just that, no savoury component!) so I had my stroganoff with rice on my own. 

I really enjoyed it but within two hours there were rumblings and up the stairs I went, the constipatory phase well and truly over 🙂  

Didn’t take any drugs and crossed fingers and although there was a false alarm later, that was it. 

Not sure what triggered the episode, we can only assume it was the mushrooms, so, since that’s for tea tomorrow (Teresa joining me this time) we will see, … 

Didn’t get to bed that early, must have been 11pm by the time I got to sleep but … 

Sun 09-Sep-2018   

I had a reasonable sleep and was up around 7:30am. Had breakfast and a cup of tea, got washed and dressed and then onto cooking the ragu – an awful lot of prep, but by the time Tereasa surfaced (10 ish?) I was almost done and it was in the oven and I flaked out around 10:30am.  

The Ragu takes around 4 hours on a low temperature in the oven, so I was done cooking for the day. I had lunch then the sofa for the nap – I was “in bed” from 1.00 pm to 4.00 pm but probably only slept for half that time though even now, at 5:45pm, I am incredibly tired. 

In any case, after the sleep, I managed to make up my “ploughman’s rolls” but even that felt too much. There can be no doubt that I am not good in the afternoons. I forgot to put in the slices of tomato, so I need to do that tomorrow! 

Despite having that nap, I feel exhausted but I am able to type in this entry, so it does give me a bit more of an evening. 

Teresa joined me in the Chicken and Mushroom Stroganoff this evening – her with noodles, me with rice. She liked it!!! I had a smaller portion in the hope that it wouldn’t affect my system so much. That worked, there was some slight activity but close to “normal”. 

For the last two nights Teresa has not slept well, which is in fact two nights since I had the CT scan. Scanxiety doesn’t just affect me, it affects both of us. 

By the way “she Liked it” needed to be in quotes, Teresa can be quite fussy about food, even her own and certainly mine. I tend to be more relaxed and so am happy with meals that if the shoe were on the other foot, she wouldn’t be. It’s not nasty, it’s who she is and I married her and love her for ALL of who she is. So, getting a “like” from her is more important to me than you’d expect. 

Why does it matter? Teresa does the majority of our cooking, especially post-accident and cancer diagnosis. She is a brilliant cook, she can just open the fridge door and a great meal falls out of what seems like an empty fridge! I am a competent cook, but not in the same league, I call myself a “bucket” cook, everything in one pan and enough to feed ten people. Finding a recipe I want to make and that she likes (as well as me) is hard work.  

Since I started on Pazopanib her task has been harder as I am much fussier than I used to be due to stunted taste buds, although these are better now than they were at their worst. Even so, it’s still not easy and to some extent it has taken the edge off her fun, worrying about whether I will just say it tastes like cardboard, whilst knowing that 12 months ago it would have been great. I’ve said before, fish is my greatest loss. 

SO, I like to cook for her, it’s exhausting, my sense of taste means I don’t know what I’m making in terms of how it is for her or anyone else, but one of the things that makes us US, is cooking so, it’s worth the effort and the exhaustion and the worry making a meal for her (two this weekend) that she enjoys, even if it takes so much out of me. 

Mon 10-Sep-2018   

“Normal” poo this morning so it seems that it wasn’t so much the mushrooms themselves as the quantity. I will keep an eye on quantities, I need to do that anyway as my weight is starting to think about going up. 

Had the “spag bol” this evening and that went down well too. Two meals, both worked for her, RESULT. 

Tue 11-Sep-2018   

Off to the office in Penryn this morning. I get up at the same time as I always did to go to work but nowadays I arrive at least half an hour later than I used to. Some of that is down to my more leisurely driving but most of it is just how slow getting moving I am in the morning :-(. 

A good morning but a nap in the afternoon was very necessary 

Wed 12-Sep-2018   

An ordinary sort of day, pain, poo and work! 

Thu 13-Sep-2018   

We have some friends coming down for a few days tomorrow and yesterday Teresa booked a couple of restaurants for meals on Thursday and Friday nights. The Old Coastguard on Thursday and the Gurnards Head on Friday. We know parking in Mousehole is crazy and there is a public car park near to the Coastguard (the parade) but I really didn’t want to have to walk from there to the restaurant, especially up and down slopes. Teresa asked if they had disabled parking and they said NO only for guests, drop off the disabled person and park next door. 

Well, it didn’t sound right to me, but I knew I could handle the walk and so didn’t fuss. This morning I checked the car park using Google Street View (as obsessive autistics always do, even when we know where we are going we still need to check and double check every step of the plan). 

There’s a barrier and yup, Angelique is too tall to fit under. 

At this point, in the past, I would have exploded; as it was I still struggled. Teresa was out, and I sent her two messages, the first said “I’m not going” and that was that, not kind of me, but, …, the second was more reasoned and I explained what options I felt I could have. The primary one is that she try phoning the coastguard again and ask “harder”. In the meantime, I sent a feedback form to the Coastguard explaining that I was the driver and I couldn’t park in the car park and why don’t you have a disabled access policy? 

Well, Teresa rang them and then I found a reply saying that “yes of course” you can park, it will be right but we will put out some cones for you, we hadn’t realised that the “disabled” person was driving. 

Well, fair enough, things happen. 

We had a lovely meal, albeit the drive there was in an incredible downpour, double-speed wipers all the way. The parking was tight but fine. The front of house saw us arrive and checked we were OK. 

The meal was excellent, more choice and bigger portions than the older sister hotel (the Gurnards Head). As it happens I enjoyed all my courses, and all was well. 

The only downside was that because of my distress over the parking I wasn’t able to sleep that afternoon and so I was incredibly tired and fatigued. That said, it was great to have the company of the Cambridge/Lewis contingent down in Cornwall again, it’s been a while. 

Fri 14-Sep-2018   

Today was always going to be a very long and tiring day and so it turned out to be. 

We picked up our visitors from Penzance and drove to Lelant Saltings to catch the Park and Train to St Ives. 

We did have to wait a bit and it then decided to rain, however I was able to get under the shelter and my waterproof got its first outing. 

Train was fine, we were using our “old lady’s” trolley to carry the cushions, water, waterproofs, …, having learnt the lesson on our London trip that carrying bags (Teresa not me of course) was hard work! Our friend Rosie said Teresa looked like my golf caddy, though I’m not sure how many golf caddies would use a pink trolley… 

Walk to coffee/eat (at Pedn Olva) then a walk down to the St Ives Arts Club for talk, we had met Toby Treves, who was giving the talk, at the Lanyon exhibition in London that I have written about previously. Toby also wrote the catalogue raisonné for Peter Lanyon that I raved about shortly after my accident last year. We had tried to get him to the Penzance Lit Fest this year, but he had to go abroad. I knew he was doing this talk at St. Ives and wild horses not stop me going. 

Getting a buggy to St Ives and then trying to use it would have been a nightmare and so we decided to use a mixture of me walking and taxis. As the talk was upstairs, I couldn’t have gone if I’d been wheelchair-bound, which is rather a shame, art is not just for the abled! 

Anyway, it was a brilliant talk, all in our party (now six in all) seemed to enjoy it, I certainly did. 

The others then set off to walk to Tate St Ives while we waited for a taxi. It was a bit late and even then, once we were it took us to the station and we had to point out that wasn’t where we had booked to go to! He then drove at a CRAZY speedy to the Tate. So crazy that Teresa felt really ill. 

We picked up the wheelchair we had reserved, and Teresa got in for free as my carer – we never thought to ask but it was just offered to us. Well done the Tate (got to give them credit where credit was due because they later they truly blotted their copy book!) 

We got to the gallery at around 3.00 pm and I was exhausted. While the others went off for coffee and lunch, I used the wheelchair to buzz around the Cornish section to find the Lanyons. It’s marginal as to whether walking or using the chair was the least tiring, but being able to stop and rest at any time was a big help. Once I had re-joined the rest in the cafe, I had a bite to eat then Teresa wheeled me back to spend more time with the paintings and that certainly made a massive difference. Having a chair I could move around to view from was very helpful too.  

 

The question is, what do people like? The back of my head? Thermal (the painting) or me looking at it? 
You can’t see the wheelchair I am sitting in that let me get around to all the Lanyons without total exhaustion.  

I vote for the chair 🙂 

 

Still not sure why the back of my head was such a favourite view :-). Oh, and this was Clevedon Bandstand one of the pictures talked about by Toby Treves at the talk we had all been at earlier. 

My biggest disappointment was how badly the painting St Just was hung. I should have taken a photo, but I was in such a state of shock that I didn’t. It had been hung in such a way that it was not possible to stand any more than six feet from it (the painting is over six feet tall!) and even then it involved  standing in a thoroughfare and with such poor lighting that from one side there were loads of reflections. It’s not like there aren’t parts of the gallery with much better perspectives. I have no idea what the curators at the Tate were thinking when placing such an iconic and famous picture, but they seem to be either lacking in competence or just hate Peter Lanyon (who knows the real motivation, the staff on the day didn’t). Talking to the stewards, we were not the only ones to complain about how poorly it was hung. 

Shame on you, Tate St Ives. 

As for the Tate St Ives not stocking Toby Treves catalogue raisonné! Still it’s good to see it being sold by the independent Barton Books in Penzance. 

I really don’t understand the Tate as an organisation. There has been no exhibition of Peter Lanyon’s work in London for a very long time, not even this year of his centenary! Even in St Ives they seem to not really understand. There was a retrospective here eight years ago  and it was brilliant, but to have an iconic painting like St Just hung in a corridor is just lacking in respect. 

Blah Rant over 

We got a Taxi back to station (different company :-), smoother ride). 

We waited a while for the train and as it pulled in I asked where the trolley was? We’d left it in the Taxi.  

Oops. Teresa had to ring them and ask them to bring it back so we missed that train and had a half hour wait for the next. I needed the loo so exhausted myself walking up and down steps and slopes to get to the ones down near the beach. 

Teresa and I did well to avoid this turning into an argument (as it would in the past) as I know how stressed I felt, but I was able to contain it by a) warning her not to keep apologising as that would make it harder for me to cope and b) going to that loo so I wasn’t worried about “accidents” due to the extra-long wait. 

Still, we made it to the Gurnards Head in time for our 7:30 p.m. meal. I did not enjoy any of my courses this trip. Our last two visits here were good but this trip it didn’t turn out well. It was OK, but nothing to be excited about. Teresa, on the other hand, praised all three courses whereas at The Old Coastguard she had found the pudding disappointing. 

I did experience explosive diarrhoea part way through, but made it to the loo in time. Good job the one cubicle in the gents (no disabled) was free when I arrived!!! 

We took our visitors back to their hotel in Penzance and got home, things in the bottom department clearly building! 

Made it home and even worse diarrhoea– full scale Barney 

Took loads of Loperamide – an Immodium Instant at the Gurnards and two ‘normals’ when I got home. 

I made it through the night, just, but a change of knickers was needed all the same 🙁 

Postscript 

Cooking and talking are two of the key things that make Teresa and I who we are as a couple.  

That day out was fun, but it totally wiped me out, even the small amount of walking and manual wheelchair was too much in the end, didn’t stop me of course, but time to recover needs planning and is often days not hours. 

The bottom department never ceases to be a source of “entertainment” and challenge! 

The Bean, Pendeen, 12-Oct-2018 

 

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