Month: October 2018

Many poo adventures and looking at anniversaries – 06-Oct-2018 

 

Halsway Manor, this the view that greeted Teresa.

Sat 06- Oct -2018   

Teresa is away at a singing course at Halsway Manor this weekend, so I am on my own today. I made malt loaf and pockled away at work. 

It’s odd being here on my own. When Teresa left yesterday, the cats retired upstairs to our bed and did not seem to move (apart from coming down to eat on occasions), however today they are downstairs here with me, and they stayed here all day. 

A typical knot of cats on Teresa’s chair! 

Sun 07- Oct -2018   

Not only did the cats spent all day with me, but they stayed for the night as well. I wonder if they realise that I am the only game in town and they need to curry favour? 🙂  

Teresa is still away, and I am still pockling along, also did some Lego sorting. 

Two years ago, I asked for some Lego for Christmas. I didn’t want a set, just a bag of mixed bits so I could play around with them. That was an awful lot of bits and, despite wanting to, I never got my head around them – not surprising as I was fresh into my new job in Penryn and then there was all the stuff Teresa and I wanted to do now I lived at “home”. Last year, well, we all know what dominated last year. However, recently I’ve started sorting out all my old bits AND requested some Lego for making two specific things, both rockets, one of which is the Saturn V. That’s the rocket used for the Apollo Moon Landings. I had made an Airfix kit of it in my teens, but it went the way of many “childish” things. Now, as my years unwind (somewhat quicker than expected 🙂 ), I wanted to recover a little of those memories, so I made a proposal to the family and they seem to have agreed to Dad’s weird Christmas presents! 

Mon 08-Oct-2018   

Constipation seems to be the name of the game, I wish I understood what happens in the bottom department! 

Teresa got back from Halsway in time for lunch today and an awful lot of nattering ensued, but as a result I failed to sleep at lunchtime – no surprise, brain clearly not ready to sleep 

I ended up late getting to bed and even then,only did so because we recognised the hyper manic state I get into when I am too tired 

Tue 09-Oct-2018   

Despite my exhaustion, it was an awful night last night, it took ages to sleep and then I only slept fitfully. I decided going to work was a bad idea, there was a danger I’s fall asleep at the wheel, or at my desk! 

Constipation is STILL running, so I took Senna this evening to ease things by the morning (hopefully!) 

Wed 10-Oct-2018   

Not going to work today, Senna can sometimes be “exciting” when it’s kicked in. 

However, although it had eased things, there was no wild excitement. 

Thu 11-Oct-2018   

Ok, first we are back to diarrhoea followed by a full Barney and a Loperamide, talk about from the sublime to the ridiculous, one day I’m blocking it, the next loosening it and the next blocking again. 

Oh well, we are getting there, though I have no idea where “there” is 🙂  

I also went out for a walk for a bit (20 min), now exhausted and pains in all sorts of places, but glad I did it 

For tea tonight, we have (at my request) Lasagne, a meal I love, but after a major diarrhoea attack this evening I remembered that it can trigger diarrhoea and I need to take Loperamide before it. Because I didn’t, my body has gone wild! 

Fri 12-Oct-2018   

Just an ordinary day, however it occurs to me that you read a lot about cancer and its impact on my life, somewhat about autism, but nowadays very little about gender diversity. I think the latter is because I am not running into any issues about just being who I am. Yesterday Teresa told me that a photo came up on Facebook from 10 years ago of a friend of ours (who sadly died this year) and another “bloke”. Teresa recognised the location (a trip to Russia in 2008) but who was this strange bloke? HE wasn’t on that trip, I was, it’s just that’s not how I look anymore and how I am now IS who I am. That I guess is that. In our village, pretty much anyone other than tourists know who I am and are no longer surprised, albeit I dare say some are confused but “live and let live” rules. The hospital, work, …, all know me well and just accept I am Bean, whatever bits are dangling (or not). 

Now we (well me) are back into constipation – maybe just nothing to go with but having taken 2 Loperamides yesterday I am starting to get concerned. 

Postscript 

There are many anniversaries coming up; indeed, since this “new” life started nearly a year ago, everything is an anniversary, hopefully a celebration that I made it “this time”, so we have: 

  • Strictly – say no more, it is an integral part of our relationship and build up to Christmas and always has been – last year Teresa was wondering whether she’d ever be able to watch it again. 
  • 27-Oct – Day of the accident and the original diagnosis 
  • 15th November – 11th anniversary of Teresa and I first meeting 
  • 24-Dec (as well as my sister Jane and my cat Jane’s birthday) it is the 50th anniversary of the first manned orbit of the moon (Apollo 8) 
  • 25-Dec Christmas #2 (since diagnosis) 
  • 16-Jan My Birthday #2 (since diagnosis) 
  • Not 14-Feb – Non-V #2, we have always celebrated Non-V, Valentine’s day itself is just too commercial, but we do it our own way on a nearby day, even this year we managed. 
  • 19-Apr Teresa Birthday #2 (since diagnosis) 
  • 20-Jul 50th Anniversary of the first moon landing. This is the one I feared I would never make and am still a long way from being able to believe I will, 6 months is a VERY long time in the life of cancer 
  • And then we are on to Season #2 of Folk Festivals, planning but not too much in case I am too ill or worse! 
  • And, of course, we have the regular 3 month go/no go scans punctuating everything 🙁  

The Bean, Pendeen, 30-Oct-2018 

 

 

The actual results are in, poo continues – 29-Sep-2018

No pictures, no cats, so probably will even notice this float past on Facebook 🙂 

Sat 29-Sep-2018   

I intended to do some work on the annexe today, having decided that was more important than me getting a morning out in Falmouth, but first we needed stuff from Sainsburys and that can be a full morning’s job. I let Teresa sleep in till 8:30am and then over tea/coffee we got into discussing (in that way that is stressful for both of us) and we ended up being late getting out. 

Shopping was fine but I used their electric buggy – it does help me be able to wiz around and not burn up limited energy reserves, even though I do always feel a fraud … 

We got back home around 11:45 a.m., had lunch followed by a nap. 

Not sure what I did after the nap? 

We discussed  changing our evenings as having a nap has helped my alert stages, from “up” to 4.00 pm and then brick wall and zombie till bed at 8.00 pm, to “up” to 1.00 pm, nap till 3.00 pm or even 4.00 pm, then active till 9.00 pm. 

We agreed that tea (during the week certainly) would be 6:30 to 7.00 pm, right now that means Strictly Take 2 🙂 and 7pm to 9pm (ish) Teresa does reading/writing and I do these blogs, study for the autism course, work for Penryn or just faffing around. 

Sun 30-Sep-2018   

We didn’t do the annexe today as moving Teresa’s desk from her study to her (our) bedroom was more urgent. It needed doing so that she can have her office fully clear while she decorates it.  

Not a trivial job, tiring because it was quite physical. I had a rest downstairs for a while then we needed to run a new Ethernet cable from my old office downstairs. There was already a hole in the floor (to take the cable through to Teresa’s study) but it already had one cable in it so was tight. Still, a long screwdriver with string taped to it poked down through floorboard and ceiling of the room below got the string down. The new cable was taped on to the string and then pulled up and eased (wiggled 🙂 ) through to the bedroom and an Ethernet connector used to join it to the existing cable from her PC – and the job was done. 

Me, I was wiped out. We had lunch and I had a long nap 

Later, I did get some work-work done and cracked a work problem (at least it looks like I had, more on that later) up until tea time and then Strictly results show, … 

Diarrhoea seems to have eased off 

Mon 01-Oct-2018   

We started the new evening regime today and it seems to be working 

All still well in the bottom department, what’s going on? 

Tue 02-Oct-2018   

Went into Penryn to the office and – ok, the drought is over and the poo flood returns, first time needed to travel quickly to the loo in the office but no accidents!!! 

Looks like I hadn’t quite solved my technical problem as well as I could, but I know what I need to look at, so hopeful, … 

Home and nap, 

Bit of faffing, Strictly Takes Two and then our separate ways, which finds me typing this week’s blog up to this point. 

Wed 03-Oct-2018   

Didn’t settle till gone 11.00 pm last night and up around 6.00 am 

Diarrhoea was missing this morning, but by mid-morning, oh yes it was back, and again this evening, so that’s two Loperamide’s. 

One of the side effects of the current anti-nausea (metoclopramide) is diarrhoea; I thought for a while it wasn’t, but it is! Oh well, after this weekend I can go back to Ondansetron (my 10-day break will be over) and see how things go. 

Had a good morning’s work and a decent nap this afternoon but then I got in half a dozen bags of logs for the wood burner – which we’ve started to light once the sun goes down. That was Ok (at the time) though I then had to clear the kitchen drain outside of leaves and the first movement of my right arm had me screaming in pain (a muffled scream, but not silent). I finished that job one-handed. 

Lost energy much earlier this evening, feel the need for bed now at 8.00 pm but I think that’s the physical effort kicking in? 

Got my application for a GWR Mobility Scooter permit sent off, more complicated because you need a “passport” photo of your scooter. Just how do you get your scooter in one of those photo booths, that’s what I’d like to know. Still got it sorted and filled in the paperwork and crossed fingers I can take my electric buggy on the sleeper when I go up for my autism course for three days in London next month. 

Thu 04-Oct-2018   

Just spoken to the Cancer nurse and my results are now back. Basically good, but couple warnings: 

  1. Jaw pain is from a wisdom tooth that is horizontal (i.e. not cancer). If not causing a problem, leave alone as treating it requires coming off the drugs for a while. 
  2. Raised Haemoglobin has been referred to a Haematology consultant, chances are he will just call me in and drain off a pint of blood to reduce it! But not a worry at the moment.  
  3. There are some new spots on one of the lungs. I think that was the Top RHS (near all the accident damage), I’ve not got the actual report yet so can’t double check my notes. Probably the result of an infection but could be cancer. If it is then it probably means a change of drugs to 2nd line which I’d rather not! Will review at next scan. In the meantime, get the GP to do a Sputum test to see if it tells us anything 
  4. The blood tests were late because the lab changed policy and Biochemistry tests from GPs can now take up to 7 days not 24hrs! So just get them done earlier. 
  5. The Lymph node tumours are in the main stable and in some cases shrunk so, if the lung problem is an infection, it’s excellent news, otherwise, well, one step at the time! 

Bean 

Fri 05-Oct-2018   

It’s a week later (doing the first edit on the blog) and I have no idea what should be here, though it was the day Teresa deserted me and set off for her singing course at Halsway Manor. 

Just in case you think I resented her going, I didn’t, I encouraged her to go even when she was looking to me to give her an excuse not to! 

Postscript 

A lot of people hear the results above and the bit they see is “tumours shrunk or the same”. The bit about something possible on the lung that may be something benign they, without exception, read the “benign” possibility, whereas I see the “cancer” possibility. I know that if it is cancer, then what was barely visible now, in 3 months could be dangerously growing and spreading and everything will get very serious very quickly. So, I need to prepare myself (and Teresa) for the worst, whilst obviously hoping for the best. Except even the best is not good, infections are hard to fight off with a compromised immune system, so even if that is all it is, it may take a lot of time and effort to clear it up and stop it getting worse and weakening me allowing the cancer elsewhere to wake up. 

Is it really good news? I’ll let you know in three months’ time. 

Welcome to my world, I can’t afford to be optimistic, the fight against this cancer is too hard to take your eye of the ball and let it gain even the smallest of victories! 

The Bean, Pendeen, 26-Oct-2018 

 

 

Scan results week – 22-Sep-2018

You need to know Jane is VERY reluctant to sit on my lap and will only do so on the basis I don’t touch her! Teresa was away the day I took this and she had no alternative so she “tolerated” my hand, there’s a reason she is affectionately called “The B*tch” 🙂 

Am I really that far behind, over a month – yup, there’s a lot in the queue in various states of edit, but it’s a struggle at the moment to do that last step to get them out, not helped by Teresa being so busy with her own stuff. 

Sat 22-Sep-2018   

I was completely shattered after our couple of days swanning around St. Ives and gourmandising at The Old Coastguard and The Gurnard’s Head (colloquially known as ‘The Gonad’) but I joined Teresa for a quick trip into Penzance to have coffee with our visitors before dropping them off at the station. Originally I’d  said I wouldn’t go in today as I needed a rest day, however Teresa was not feeling great and they were leaving on an earlier train so as it would be just an hour for coffee at their hotel and my Disabled badge meant I could park on the double yellow lines right opposite (first time I’ve taken advantage of that option) and of course in a safe place! 

The rest of the day was spent somewhat comatose (by me) 

Sun 23-Sep-2018   

Loads of poo, more poo than you can shake a stick at (anyone for Pooh sticks?) 

Mon 24-Sep-2018   

Off I went at 8.00 am for a blood test, it took two attempts to get the blood out, not sure why. 

I haven’t gone on about it, but scan results are due on Wednesday and it is very much on both our minds, so while there have been no countdowns, we are in the depths of Scanxiety, whilst doing our best to get on with our lives. 

Mind you, it’s difficult to just “get on” because our normal isn’t what we always understood normal to be, oh well, fingers crossed but no breath-holding 

Tue 25-Sep-2018   

Off to the office in Penryn, just head down and work 

Tired as usual and afternoon nap when I got home 

Wed 26-Sep-2018   

Not a bad night considering what’s going on today. 

Off we went to Truro –  we were early as I always am, getting there 9.00 am for a 9:15 appointment. We were called in to the consulting room within a few minutes but then sat waiting for 15-20 mins (for good reason as it turns out). 

There follows an edited version of my Facebook posts on the subject in case it looks familiar. 

Usually there are five days between CT scan and results being available. This time there were twelve days but no results available. As a result, the Oncologist cannot say for sure what is going on! Based on his own observations (during that 15-minute delay before seeing us) things are “stable” i.e. no obvious change or new additions. However, until the Radiologist does his report we won’t know for sure. 

I did get a chance to see the CT scan itself, it is not a pretty sight there is a solid mass of tumours (in the lymph nodes) all the way down my body (in the area behind the breastbone), wrapped around all the major blood vessels to and from the heart, lungs, kidney, liver, …, once the cancer manages to grow some more the whole house of cards will come tumbling down 🙁 . So, those drugs continuing to restrict growth is rather important! 

Oh, and you know that blood test we did on Monday, well it’s stuck in a backlog of thousands of tests in haematology and can we do another “urgent” one please, right now! So, yet another needle in the arm! 

The blood test is important as it indicates if there is damage to the liver, kidney, bones, heart, …, so far, it’s been Ok, but we don’t know that it still is. 

It will probably now be weeks (you’d think days, but once the “appointment” is done everything goes into a slow lane) until we find out the true state of things, so: 

In conclusion, all is probably OK, but we’ll let you know when we get our act together! 

Waiting for results is always tough, that’s why we have the word Scanxiety for those of us waiting for CT scans of cancer growth. THAT’s the hard bit, the tension builds and builds and then … nothing … We know it happens like that sometimes, the NHS is totally overloaded, but, when it’s your life on the line, it feels personal even though you know it’s not, it just happens some time. Waiting when you know the day and time to find out is tough, waiting when you have no idea if it will be days or weeks is REALLY tough. 

I did ask the Oncologist for an alternative anti-nausea drug to Domperidone as it was useless, he prescribed Metoclopramide. 

Ondansetron is brilliant at dealing with the nausea, however the body gets used to it and it stops working hence my on/off pattern of three days on and one day off, two days on, one day off. That has worked for a while with the Domperidone days (the two off days) getting more useless. I now need to take a couple of weeks “holiday” from the Ondansetron as it was tailing off even when I took it that on/off way. So, I needed to take a 10-day break from Ondansetron to reset my system and I needed a more effective #2 than Domperidone. I rarely mention the nausea because it is so well managed most of the time, BUT Ondansetron just like the cancer drugs stops working 🙁 fortunately unlike the cancer drugs if you stop taking it for a while it starts working again. If ONLY the cancer drugs behaved the same, but they don’t and with this cancer in me, we can’t afford ANY downtime of not working. 

Got home and crashed out for the rest of the day. 

Thu 27-Sep-2018   

Work at home, diarrhoea too bad to risk driving. 

Teresa had a talk this evening in St Just at the library

The poo was under control so off I went in support of her – as she has been for me every time I’ve done any public speaking. 

She was fantastic, of course she was, I didn’t marry someone less than fantastic, do I look like an idiot?

Fri 28-Sep-2018   

Today was slow starting. I did have a good night and felt really bouncy and alert at 9.00am, but now at 10.00 am I can feel things slowing down 🙁  

Just getting on with work, bit of head banging against a brick wall problem, but getting there… 

Postscript 

Unless you experience it, the strain of waiting for results on the progression of a fatal disease is really tough, not getting those results when you expect them and an indeterminate wait until you do is torture and yet somehow you need to function, the disease cannot take over, but that doesn’t mean the waiting is easy, the associated stress can seep into all sorts of places, extra fatigue, misunderstandings (between two partners, both suffering in different ways), …  

We will both be glad when we find out what is going on

Postscript 2

We did find out a week later, it was rather curates egg, mainly good, some worrying, updates in a later blog, as usual, the immediate news appears on Facebook, but it always gets here eventually 🙂 

Postscript 3

During the final editing of this (today) I spotted this blog from Rachael Bland (I’ve talked about her before), do read all of her blog, but look at the sections that start with Scanxiety – different cancer but I experience EVERYTHING she discussed. It’s no fun even when it looks like it’s “OK” from the outside.

The Bean, Pendeen, 22-Oct-2018 

 

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 

 

From explosive to restricted, Poo is ever changing – 08-Sep-2018

Why a picture of my scooter on a ramp? Well, first GWR require you to have a “permit” to take a scooter on their trains and the permit requires a Passport picture of the scooter!

Also it shows off the ramps I use so that I can get the scooter into and out of Angelique single handed!

Sat 08-Sep-2018  

I felt great when I woke up today but then I had breakfast and after that felt tired, sick and lousy, so a day of taking it easy and catching up on blogs. Not the editing polishing phase, but the just getting words down so I don’t forget what I want to say. 

Shoulder pain is building for the third time, this is becoming a habit :-(. Thinking about it, only twenty-four hours ago I pushed my shoulder as far as I could during physio; I suspect that, since all the other possible causes on previous occasions seemed to have occurred around a day earlier, maybe there is a delay from cause to effect and I can pin it down this time to my shoulder having to do work it doesn’t like. 

I’m not sure if I’m happy or sad about that. Will monitor. Coccyx also causing a lot of pain too. 

Last and certainly not least, the diarrhoea is doing its thing this evening and drugs are called for to slow it down. 

Sun 09-Sep-2018  

Slept long again, it’s definitely taking time for me to recover from that Sheffield trip. 

This afternoon Teresa and I went blackberry picking, close to home (five minutes walk, if that) and yet I was so tired that I sent Teresa home ahead of me as I was walking so slowly; I got home (about fifteen minutes after her – she really didn’t like leaving me but I insisted!) and crashed out for two hours, moving at 5.00 pm and up at 6.00 pm. It was time for tea and yet by 8.00 pm I was desperate for sleep once more, and so to bed. Two hours later, I was still wide awake. First time that’s happened for a long time. I suspect my nap, and bedtime were too close, even though I felt ready to sleep. I guess we are seeing some of the differences between fatigue and tired: sleep cures tired, it doesn’t cure fatigue nearly so well. So, the sleep helped the tired side but the fatigue side only a bit but not enough but by then I wasn’t physically tired enough to sleep although that’s what it felt like. 

Oh well, cup of tea and then out I went! 

Mon 10-Sep-2018  

Awake at 5.00 am and in my office by 6.00 am. I’m still tired and expecting to have my afternoon nap after lunch! 

In one of my recent Blogs, it was news about the progression of cancer in Rachel Bland that triggered a rant from me about being open about cancer.  

I wondered what had happened to her, found out and I posted the following to Facebook: 

I commented then that I had seen in the news that she only had a few days to live, I hadn’t seen anything since so I looked. She did indeed only have a few days. This article was released on 5th September. I have no recollection of seeing it or hearing of it, however we were travelling to Sheffield that day so I may well have missed it. 

It is good in a way that this article shows pictures of her healthy, I can see some of the newspapers show her looking a lot less well and a part of me regrets that the good AND the bad are not shared equally. I for one realise that I will not look radiant when I am close to death, chances are I will be in a hospital bed or hospice or maybe at home and “waiting”. 

No matter how hard it is to stare this bloody disease in the face and no matter how many tears I shed, it isn’t going away and I’m not shutting up. 

Bean 

Hmmm, as I read comments on Facebook, I wonder what peoples’ perception of my goals are? 

My experience of cancer before having it was (in some respects) the same as my experience of autism and gender before I started talking about it. It’s there, some people talk sometimes, sometimes they talk cobblers and sometimes they make sense. 

I write about how this affects me. I’ve been around for quite a few years and seen an awful lot of people try to deal with all those issues, myself included. Yet the world outside of those experiences seems to not show a lot of interest. 

Whether you are being open about autism, gender or cancer, you are considered “brave” for speaking out. If you die, then you were the best brother, father, husband, wife, cousin, neighbour, … 

I know that the one thing I would like to be said at my funeral is that I was not “perfect”, not “wonderful”, not “brave”, not the “best father, husband, worker, …” 

I know am NOT any of those things and anyone who knows me knows that too. Why should death change me into a saint? I don’t want anyone to remember me through rosy coloured glasses. The pressure in society to remember people this way tends to generate a polarised view of people – saints or devils. Rarely is any of us either, we can all be both at times. 

That is why I don’t like the “brave” word or anything like it, we are just ordinary people and the more those who speak up are labelled brave the more those that don’t are left feeling that they aren’t, and that’s not helpful. 

By the same token, there are bad people and good people with autism; bad people and good people who are gender diverse; bad people and good people with cancer, …, something that those who use a subset of any of those groups to identify the nature of everyone in those groups could consider. 

I am very aware of a group of people down here in West Penwith who seem to believe that they can speak authoritively (and aggressively) on matters of gender diversity using only extreme examples to make their point. Whether that is for or against doesn’t matter.  

There is a saying in the autism world – if you’ve met one person with autism, you’ve met one person. The same is true for gender diversity and just as true in the world of cancer there is no ONE breast cancer, renal cancer, lung cancer, …, every cancer, despite gross similarities, is different in every individual. 

I believe it’s really important that we meet and treat people where they are, not where we think they are or we think they should be. I also think we should meet them where WE are not where we think we should be, if cancer scares us (whether we do or don’t have it) then say so, don’t pretend, that’s not healthy for anyone.  

I’m sure there are many wonderful people who die, but I wonder if any of them are the perfect humans being you read about in the press or see on TV or hear on the radio, never having a bad day or uttering a cross word! To hold someone up as the ideal for how one copes with death is to set a bar too high for most of us to reach, and we end up feeling like failures. 

I’m not a failure because the incessant poo drives me nuts, I’m not a failure because I can barely drag myself through the day. Nor am I brave for carrying on regardless, it’s just what my life is, it is NORMAL for me. 

Tue 11-Sep-2018  

Went into the office in Penryn, more tired than I have been when going there and with a sore stomach and shoulder, … When people asked how I was I said “lousy” … 

Came home early and crashed out. It didn’t seem to help, and I woke as tired as I was when I went to sleep 

Wed 12-Sep-2018  

Hmm, I woke almost hourly during the night and every time felt exhausted. I got up at 7:00 am and all I wanted to do was go to bed. I went to my office to work and I still just wanted to sleep, but I needed to get on, so I am focussed on that post-prandial nap 🙂  

Hmm, side of face/jaw getting really painful. Last time it happened (a few weeks ago) I went to the doctor and got some antibiotics that seemed to work. Of course, I spoke to the cancer nurses first, you report ALL problems to them, you never know when they are a sign of cancer or drug problems 🙁 . So, today I rang them again and we agreed that since my scan was on Friday they would amend it to include my jaw. Why? Because that’s one of the places the cancer likes to visit and whilst it “might” be just an impacted wisdom tooth or abscess, it might not be. No point a dentist X-Raying it as they are not looking for cancer so better to amend the CT scan and get someone to look more closely. 

Fingers crossed it’s nothing much – though even if it isn’t, any surgery whatsoever requires coming off the cancer drugs (which restrict healing) leaving existing tumours to grow freely. If it’s a minor problem that might just be a few weeks, but with cancer as rampant as mine, any stop is worrying. As for the worry that there might actually be cancer growth, well, I had a weepy moment and then put it back in its box (though writing about it now a day later and the tears are back). 

Thu 13-Sep-2018  

Booked an appointment with the GP to have another look at the jaw, in case this time they can spot something. It will be nearly two weeks before I go to clinic and I really could do without the pain and discomfort for all that time. Plus, infection of any sort is dangerous with a compromised immune system (the drugs and cancer do that) and you just can’t leave even the smallest problem to “brew”, they turn nasty REALLY fast. 

Doctor doesn’t want to do antibiotics so it’s painkillers till I get the result of the CT scan. After some prodding he felt it was more likely to be “inflammation” of the hinge area of the jaw (there was some proper medical term!), apparently, it’s not unusual and it may be that I am just more susceptible now?  

So, on anti-inflammatory (Naproxen) as it only screws with blood pressure and not the Pazopanib as I thought all anti-inflamatories did, so I need to monitor BP that bit more closely. 

Interestingly (or not) poo seems to be heading in the direction of constipatory! 

Fri 14-Sep-2018  

Scan Day 

No problems, I was in early, they weren’t expecting to do the jaw but apparently “neck” goes up to eye sockets (I guess they mean spine not neck!). 

The scan is also done a bit different: 

Contrast goes in a bit slower so it’s still there for the longer scan time. They do the body and breath-holding as normal (from shoulders downwards) and then the scanning table returns to the “top” and scans my “neck” – from my shoulders to my eye sockets, i.e. the lower half of my head which “should” include the jaw and so hopefully I can get some feedback on that because the pain from my jaw is really becoming quite unpleasant 

Poo continues more constipatory! 

Postscript 

My CT scan was on Friday, that lights the blue touch paper for my results 12 days later (Wednesday 26th September) and the tension is already rising and will only build. There will be some who will say “you can’t change it, so don’t stress”, “it will be what it will be”, …, for anyone who thinks that about anyone in this situation, my reaction is unprintable. Even if I could ignore the light coming towards me from the end of the tunnel, who says that Teresa can, my children can, … 

Whilst I refuse to let it paralyse me, I cannot and will not say that I don’t feel an icy hand reaching out to me whilst at the same time hoping it won’t find me “this time”. Is that a mixed metaphor with the tunnel and the train? Maybe, but there you go 🙂  

The jaw problem adds an extra frisson – yes, I know it is almost certainly benign and just “pain”, it “may” be just the Paz side effect known as “can cause muscle and joint pain” or it may be more cancer. I don’t see how convincing myself it is nothing helps me if it is something.  

My (neuro-diverse) brain does not cope well with surprises of any sort, so making sure that things aren’t surprises is a major “coping with life” strategy that should be well known to any autistic and is certainly not even unique to us. 

So, being prepared for any eventuality whilst NOT fixating on any one (worst or best) seems, to me, to be just common sense. Oh well, horses for courses. It’s still a right royal pain in the ass (whatever its current poo state!) all the same. 

Scanxiety Rules KO. 

The Bean, Pendeen, 04-Oct-2018