Month: July 2018

Where did July go?

The short answer is in a heatwave!

Now I love the fact that a heatwave down here in West Penwith is more like 25 than the 33 Deg C they face up country, but it is too hot for me.

These blasted (but wonderful at the same time) Cancer drugs plus hot weather take even more energy out of me than the drugs or heat would normally do and as a result I have difficulty doing anything more than the bare minimum and often not even that. I can just about hold my job together but even a 10 minute expense of energy to help Teresa or even a tad of cooking wipes me out for hours.

So, my notes for the blogs for the last four weeks are sitting here, but the energy to do something with them is sadly lacking and likely to stay that way till the weather eases off and I can finish them and publish them. That might sound a bit useless, it’s only typing after all, the trouble is it also requires thinking and that is very difficult to do with this level of fatigue!

So, yes I’m still here, no I am not all right but I should survive and am hanging on till the weather eases off and hoping I get a little more energy and less fatigue than I have right now.


All that extra fatigue plus having a bad week for Diarrhea and I’m not having a lot of fun right now 🙂 

The Bean, Pendeen, 25-Jul-2018

The June Blogs – 4-Jul-2018

This is Ferret, he was my cat but died so very young a few days before I started work in Cornwall back in Oct 2016. I remember him when I think of what is happening inside me, at least I have some chance of a bit more life, barely a year old and he was gone in three days.

Well here is most, but not all of June’s blogs, everything is out of order this month what with Scans, Results and Litfest starting today and I really must release this despite having so much else going on. 

So, one final plug and then I can, hopefully, stop all this self-publicity, I REALLY hate it. 

Tue 12-Jun-2018  

I did promise that my next blog would cover our visit to the Gower Folk Festival, but it’s not because I prioritised getting this one out before Litfest, well close! Gower will have to wait, sorry.  

In any case, as it will be reported, I worked from home today (the day after our drive home from Gower) rather than go into Penryn, but didn’t get a lot done. Not only was I exhausted after yesterday’s journey, but that scan is creeping ever closer (a week today) and my stress levels rocket (not creep) ever higher, and exhaustion plus rising stress is not conducive to quality work! 

Wed 13-Jun-2018  

Close to a full day’s work, though I continue to worry about Angelique’s air conditioning (which I discovered had failed when I went to collect Angelique after having her fridge and extra leisure batteries fitted), fretting about how much it may cost to fix. 

Thu 14-Jun-2018  

Again, close to a full day’s work, the exhaustion has eased back to its normal level.  

Fri 15-Jun-2018  

A full day’s work, plus got a call from Owen at Firehouse to say that he’d removed all the work he’d done, found where he’d caught an air con pipe, behind the trim above the offside rear wheel (Angelique has front and rear aircon, but who would expect the main rear air con gear in that spot!!!). He had got it fixed, pressure tested, re-gassed and tested again 24hrs later and now all was well. 

I cannot rate Firehouse Campers highly enough. Owen does good work at a fair price and, more to the point, he sorts problems without a quibble in an open and honest manner. In the end, although the quality of the work matters, it’s the quality of service when there’s a hiccough that really counts and Owen is to be thoroughly recommended if you have any campervan like work to be done. The Alphard is not a conventional camper van base vehicle and is a very complex beast, but I have to say that we have been very pleased with his work so far and will go back for more when funds allow. 

Sat 16-Jun-2018  

Today we collected Angelique at 9am and then went into Truro. We left Angelique at the park and ride (free since we didn’t need a bus!) and drove in Teresa’s car since the lawnmower was already in there. The weather was a bit damp at times, but ok. 

I have to say that Costa in Truro is not a place we would go to again. It was a Saturday lunchtime and they only had two madly overworked staff on duty and when Teresa talked to them about it, they implied that was Costa’s policy. They (Costa) have definitely gone downhill, mainly I think because they have tried to “control cost” and forgotten that it is the quality of service that brings people like us back. We have used that Costa often over the years, but now will only do so in desperation, otherwise we won’t be back, hope those cost savings are working well for you, Costa? 

Sun 17-Jun-2018  

Back at work in my home office, catching up on time lost last Tuesday when we got back from Gower. 

Scan is in two days’ time and I will get the results in 10 days. Scanxiety is up through the roof and it’s hard to ignore. I have neck ache, so clearly that must be the cancer growing up from the tumour in my shoulder to my neck. It’s got to be cancer, it can’t just be a bog-standard stiff neck can it? 

Mon 18-Jun-2018  

Just an ordinary day’s work, although it gets increasingly hard the closer we get to scan day (tomorrow) and results day (week on Wednesday). Hey ho. 

We got Owen to put an inverter in Angelique to let us charge the lawnmower’s battery using its mains charger. The output needs to be RCD (residual current detector) protected, given it may be used when in a wet field, so the 13A outlet of the inverter has a standard 13A RCD adapter (like you use for an actual electric lawnmower, assuming you do!) and then a 13A plug and short cable to a twin 13A socket outlet where we plug in the charger. 

Trouble is, reaching the reset switch on the RCD is tricky as it’s so densely packed in there. Plus, every time you switch off the inverter it trips the RCD – a nuisance when you have to lift the seat to get to it which is useless if the van is packed for a festival! 

So, I’ve managed to unplug the RCD and attached mains plug – rather a fiddle as it was so tight! Plugged the 13A plug in to the inverter direct and I’ve removed the twin 13A Socket panel and now waiting for Amazon to deliver me a combined twin 13A + RCD panel, which means that there is a tad more space in the seat box and we can reach the reset switch for the RCD from outside the box, which should be easier (I hope). 

The socket arrived later that afternoon (well after 5pm) – as it usually does down here in the far west Cornwall. Ten minutes later it is wired in and tested. Hmmm, not only is the reset for the RCD accessible and working, but turning off the inverter doesn’t make it trip. Tested the original plug in RCD at home and yup it trips when turning off the mains, so it was a “feature” of the RCD. No problem, I like my new solution anyway. 

Tue 19-Jun-2018  

At work in Penryn. I missed last Tuesday being shattered after our journey back from Gower, so it was nice to see people in the office again. 

To test the inverter, I hooked it up to the Lawnmower’s battery and mains charger (it had not been charged since Truro on Saturday) and whilst not fully charged when I got to Penryn an hour later, it was clearly charging. I switched off the inverter when I got to the office because I didn’t want to rapidly drain the batteries to charge a battery! 

On leaving, I switched the inverter on again and I called into Sainsburys on the way home, switched the inverter off and put the cold stuff in Angelique’s fridge – she’s brilliant for that sort of thing, no worrying about stuff warming up too much because you’re not going straight home. 

Then popped over to Costa for a cup of tea and to “waste” some time as I was early for the CT scan. 

Arrived early at West Cornwall Hospital for CT Scan at 3:45pm, I checked in about 15:10 and they whisked me straight in, I was out by 3:30pm and waited another 10 minutes to see whether there would be a reaction to the contrast. There wasn’t, at least not then! I switched the inverter back on and off I went home. Teresa doesn’t come to the scans anymore, they are routine (though I wish they weren’t!) 

By the time I got home the battery was charged. The inverter is a success, excellent. It is, of course, a Pure Sine Wave inverter, well it would be, though I suspect most of you (like Teresa) really don’t care   

Wed 20-Jun-2018  

As expected, today my body went into ‘not happy mode’ as a result of the contrast and I needed a day (in reality I should have taken two) day off sick to recover. Take all the standard side effects of Paz and multiply by ten, no fun. 

Still, at least I now know it’s coming my way, that resting sorts it out and if that’s the price for a good CT scan then I can live with that four times a year. 

Results in Seven days 

Thu 21-Jun-2018  

I probably should have taken today off sick as well, but I didn’t and it was a normal but tough day in the office at home. 

Results in six days 

Fri 22-Jun-2018  

Much better, the brain-treacle I’m wading through is much thinner, but it’s not like water yet! 

Results in five days 


I posted on FB that I am somewhat distracted by Scanxiety and getting these blogs out would be a struggle, guess what, that’s true, so another week gets added in here, sorry! 

Sat 23-Jun-2018  

Today we went to the Falmouth Shanty Festival, not Golowan or Truro Gin (for Teresa) though the latter (gin) was never in any doubt as there is a gin stall at the Shanty Festival! As it turned out she found a rum cocktail she liked and I’m sure she will add the details here (Dead Man’s Storm, Cornish spiced rum, angostura bitter, ginger ale and some other stuff that I’ve forgotten). I love that, in the past it was often more likely that I’d get the alcohol (Real Ale of course) at these sort of events as that’s often my primary pleasure, struggling as I do with any event where there are lots of people. Nowadays, me being tea total means Teresa always gets the booze and today was no exception. I’m not that interested in the shanty festival itself – perfectly pleasant but too hot and too many people for me and hence the beer would have been nice. BUT it was lovely just trundling in on the lawnmower through the crowds, guarding Teresa’s seat while she popped off to the loo and went to get another cocktail, then I’d negotiate the crowds back to the shade where I’d sit and read my Kindle. 

So, me being me and worrying about long-stay parking with access to the festival, we left at 8am, arriving around 9am despite the festival not starting till 1pm. We parked in the only long stay near Festival Square – the Dell/Falmouth Railway station. It’s not a big car park and I worried it would fill rapidly – hence our 9am arrival. It only has a few disabled slots but being early we got one; there were a lot of motorhomes in the car park – presumably performers – so I was even happier we had arrived early.  

We then trundled (well I trundled, Teresa walked) to the far end of Falmouth (the Quarry End) to Café Nero (Costa is not our friend and we know there’s plenty of space in the Café Nero, actually there is in the one on Lemon Quay in Truro too, and Teresa reckons the coffee is better, though their almond croissants have gone downhill!). Teresa stopped off at shops on the way, leaving me chained up to the nearest post as you do with a dog :-). No, there wasn’t a real chain, but the rubbish access into virtually all the shops means there might as well be. NOT GOOD ENOUGH. 

I was early on my drugs this morning so I was able eat at 10:30, which was about the time we got to Café Nero. We had a decent break and a bit of an eat, then off we went again. I spent some time on the dock watching the boats – first on my own and then with Teresa when she’d done her charity shop. Then we weaved our way back to Festival Square with yet more chaining up of the lawnmower (and me) on the way. On arrival we trundled around the stalls – a lot less than last year Teresa tells me. Found a slot to watch from but Teresa didn’t fancy the seats so I sent her off to Trago Mills (almost next door) to try and find a chair, which she did for the princely sum of £6.99. She tells me it was surprisingly comfortable. She stayed in Festival Square all afternoon, I stayed with her for the first hour or so, but the hot sun drove me to seek shade and from then on, I returned to provide moral, loo and cocktail support as needed. Weaving the old lawnmower through the crowds was always a challenge but I tried to be very good humoured and that seemed to work with only a few sour faces showing (but not saying) “who do you think you are, taking up so much room to manoeuvre” 

When I got very bored, I took myself back down to Café Nero for another break and by the time I returned (5pm) Teresa was ready to go home. 

She had a brilliant day, I enjoyed providing the “services” (Transport, seat watching, …,) and all went well. 

I’d done a good job keeping hydrated with taking along my own cold water to drink and hot water and milk for making a couple of cups of tea. For the first time on such a trip my bottom department was not left in a state and the following day all was well, Yeeha! 

Results in four days and yes, we really are counting days   

Sun 24-Jun-2018  

Back to work with a bang to catch up on hours.  It was a tough day, I was very tired after the previous day’s outing which is not a surprise, but fatigue is one of the most significant side effects of Pazopanib (cancer drug) 

I’m having my three-monthly blood tests tomorrow for kidney function (ironically that doesn’t detect cancer as I’d been having the test for years), liver function (Pazopanib can kill the liver which is why I went tea total to reduce the load on my liver), bone function (‘cos renal cancer loves metastasising into the lungs and bones and on the bones is hard to get rid of), blood count (just to check I have some  ) and finally thyroid (Paz has a habit of mucking up the thyroid making it go under or over active). I’m hoping to find I have an under active thyroid as that would explain the extreme fatigue and, though it’s another drug to manage (with its own side effects), I could get some more energy back! 

Three days to go … 

Mon 25-Jun-2018  

Blood tests at 8am and then just a day at work in the office at home 

Two days to go … 

Tue 26-Jun-2018  

In the office in Penryn today but very tired, more so than previous Tuesdays. I am hoping that the blood test results show an underactive thyroid (have I already written that?) and I can do something about the fatigue. Otherwise it’s plan B. 

Plan B is tough, because any form of exercise knocks me out for the whole day, I need to do my day’s work, then go for a walk and see what happens. Not my ideal, but I need to do something because exercise can help (longer term) with the fatigue, somewhat of a catch 22, oh well, we will see. 

One day to go … 

Wed 27-Jun-2018  

And off we go to Treliske. Appointment at 10am so we left at 8am (I’m paranoid about parking and being late). 

We were early, sitting in the clinic’s main waiting room at 9:10am, we were late getting into the little waiting room (10:15am ish) and then a long delay to see the Consultant (10:30am ish).  

Teresa was mega stressed by now. I probably was too, but with me that stress is under the surface (like the iceberg) and so I did my best to be supportive. 

Then in comes one of the cancer nurses – so, no consultant this time. That’s Ok, especially if the news is good but it REALLY restricts the questions you can get a helpful answer to. It’s not so bad if it’s the chief oncology nurse as she’s apparently only one level below a consultant and she’s really very knowledgeable, but it turns out she’s on holiday. 

Results are basically “no change”, but the scan report is nowhere near that clear and I am going to have to try to compare all 4 scan reports I have to see if I can make sense of what they say. Every scan is reported by a different Radiologist and they all have their own ways of doing it. It makes comparison difficult! 

So, Teresa is elated and I’m shoulder shrugging. Even complete remission wouldn’t get much more than a shoulder shrug from me as I am aware they may have missed something in the scan, that between the scan and the results, the cancer may have defeated the drug and be growing like topsy and in three months’ time (the next scan) gone too far for further treatment.  

Yes, I do realise that is a pessimistic thought and it isn’t one that dominates me, but because it “could” be what is happening, I’d rather not be celebrating as it means I’d have a long way to fall (emotionally). None of this is helped by the fact that the shoulder area (where I’m currently having a lot of discomfort) was not ‘fully’ scanned. They said the met doesn’t appear to have grown, but that’s not entirely convincing given my ongoing stiff neck. Will give it a couple of weeks then ring to speak to the chief oncology nurse: would expect to get some sense out of her. In the meantime, Teresa is having to rein herself back as her instinct is to drive me to Treliske, plonk me down in the hospital and demand a re-scan. Good luck with that in the current NHS crisis… 

So, there you have it, I’m better planning for the worst and being content with anything better, it makes it much easier for me to cope even though that approach makes Teresa’s life harder as she tries to be pleased in the face of Mx Sourpuss Bean. 

At the end of the consultation with the nurse she insisted on taking my blood pressure. I did point out that given where we were and the wait for results, it would be high. Shock Horror it set off alarms in their tester! Would you believe it, I wonder if I was stressed that day? Clearly that’s not something they expect! 

Checked the BP when we got home, and there was nothing wrong with it at all! I even dug out an old pressure monitor I’d thought I’d lost (when I bought the new one) and it agreed. 

Whilst I do understand that the staff at these clinics need to be detached, you’d think they understood the link between heightened blood pressure and what is happening at the clinics as there is always the possibility of awful news. That’s why we monitor my BP almost every day and most of the staff at the clinic are happy with just taking a look at our records, but not this one. Oh well, hopefully lesson learned! 

There was also certain amount of cock-up on the drugs front. Initially they prescribed 2 months of Paz not 3, I spotted that and it was corrected; however, when I got home I found I had only 6 weeks of Ondansetron (anti-nausea and constipatory-causing drug). I have enough left over of the latter, so it turns out my drugs are setup for the next 3 months, until we head back to Scanxiety at the end of September, 11 months on from the accident that set all this in motion. 

Thu 28-Jun-2018  

Back at my desk and back to work. Hopefully my head is clearer, but the heat is not much fun and although my office is downstairs, it gets almost no sun and has thick granite walls and the heat builds up due to the computer equipment and the lack of circulating air. I am going to need to try and organise a fan in here if I can! 

It was also quite a teary day as the stress from the previous few weeks starts to leak out. 

Fri 29-Jun-2018  

Should have been another day at work, but the stress of the day before was bad for both Teresa and I and we did not handle it well. I took today off sick today as well to give me space to recover. 


So, Scanxiety over for a while, at least until it starts to build towards the end of September. 

Except Anxiety isn’t going anywhere. I have a lot of discomfort in my shoulder (from the accident) but also that stiff neck is still there and I’m worried that it is cancer but because they didn’t scan the neck, they haven’t spotted it. 

They don’t scan legs or head unless you indicate you have a problem. Fine, what’s a problem and what’s unnecessary worry? 

So, I’m still not in a great place  

Onwards and upwards. It’s Litfest next week and my talk needs preparing, so that’s a bit more stress. Still, I’ll be alright on the day, I always am, though I’ll pay a high price once the day is over. It’s worth it though to see all of you who turn up on Thursday at 1:30pm for “Saying the unsayable – blogging without words”


The Bean, Pendeen, 01–Jul-2018 

Three-month Scan results and Litfest is here 2-Jul-2018

Waiting to give a talk on Autism to the Open University at Warwick University back in 2015 – hmmmm, what will I wear for Pz Litfest 2018?

Well, I have just had my three-month scan results and if you are Teresa, they are excellent (whoop de doop), if you are me they are OK (shrug of shoulders). Are we responding to the same results? Well yes, of course, but we communicate them in very different ways. Teresa with bags of emotion, me with none. Do I have no emotion? Of course not, I have an overload of emotions. However, my emotions and my brain are not wired together very well, so I know they are there, I am very well aware of them, but I cannot connect them to my experience of, and contact with, the world around me. So, in the way I process things, the mets (metastasis) haven’t shrunk and the cancer could be growing even now (it’s one week since the scan) and in three months’ time the situation could be dire.

I am pleased, but I don’t FEEL pleased or show it. Teresa is pleased and you can see it radiating from every pore!

Still, time to move onward to Litfest and our presentation.

What might you expect when you come along? Well, for starters, there’s what is advertised in the program. Teresa and I will be talking about the problems to be overcome when someone who lacks a fluent ability in written language writes a blog they would like others to able to understand, and the challenges of editing such a blog to ensure that goal is met – well, sort of…

However, there will also be space to look at some of the blog content i.e. the issues the blog talks about and how it approaches these challenging subjects.

There is much that is unsayable in our society and these are the things that Bean talks about in the blogs, from frequent discussion of poo-related problems to open discussion of how cancer affects our lives; of how different the world experience is for an autistic and the challenges he faces being ‘out’ as non-binary gendered and how it affects Teresa, and indeed what the term “gender” actually means.

How much of these areas we cover will depend on whether you, the attendees, have particular preferences or needs. We can occupy all the time talking, but I don’t like talking ‘at’ people, or even ‘to’ people, I like talking ‘with’ people, so hopefully there will be some interaction – but fear not, it’s not compulsory, I’m just offering the possibility for anyone who chooses to grasp it.

That offer is open before, during and after the session.

And, despite how uncomfortable I am with self-publicity, I’m told I cannot go without providing a link to book a ticket, so:

Get your tickets here, where you will also find out that my “unique style will surprise and engage you.”, apparently 🙂

The Bean, Pendeen, 2-Jul-2018