Month: June 2019

Out of Depression 01-21-Jun-2019

On way to Conference in Manchester – taken at Taunton Dean Services, Northbound

Although the pic above was taken during the time of the last blog, it was one of the few occasions I saw the world outside of home and a hospital!

Sat 01-Jun-2019

Somewhat faint following yesterday’s venesection, not getting anything done.

Sun 02-Jun-2019

Not sure what happened today but I’ve been “out of sorts” all weekend

Mon 03-Jun-2019

Nothing all day, diarrhoea at midnight, took loperamide

Tue 04-Jun-2019

In the office, otherwise ???

Wed 05-Jun-2019

Clinic today, I guess that’s why I have been feeling so “out of sorts”. There isn’t a conscious connection but the two cannot be separated.

No change was the verdict – no growth, no shrinkage. On balance it is good news, but I always consider no shrinkage not to be ideal.

We discussed the stomach pain I get and the consultant asked me to take Gaviscon and if it works then a more regular ant-acid drug.

So, I did, …

Lumpy diarrhoea early evening and 40 mins later jump out of bed – severe barney – took loperamide. Only diet change was the Gaviscon.

Thu 06-Jun-2019

Gaviscon and more severe diarrhoea, the link is close enough that I don’t trust it :-(.

There was an article on the BBC News web site “Are we more constipated than we think?”, yet more data on why knowing our bowel habits and the nature of what comes out is SO important. We all do it, embarrassment is not necessary (understandable because we’ve all been brought up to be ashamed of what our bodies do in that department).

Fri 07-Jun-2019

No idea what is happening.

Postscript

Teresa has been on cushion covers (for the cushions that make up the bed in the campervan) most of the week (she will finish tomorrow – Saturday) – fantastic job and done a week before we go away.

Results day does tend to screw with me psychologically, this one was the worst, partly because of those pains (abdomen and stomach). It looks like it may be stomach acid, however they do miss stuff so I remain wary!

The Bean, Pendeen, 09-Jun-2019

Sat 08-Jun-2019

Sorted out stuff from last year’s festivals ready for this year.

Teresa finishing cushions

Exhaustion

Made pasta chicken meal I use for lunches ready for Gower.

Made a meat loaf – totally failure, I had added bacon, it was FAR too salty

Sun 09-Jun-2019

Main load of bulky stuff into the van, some stuff still to do but we seem to have more space thanks to removing awning and adding utility tent

Mon 10-Jun-2019

Made new meat loaf and flapjacks. New meatloaf a lot better

Spoke to GP about stomach acid stuff and Gaviscon seeming to cause diarrhoea, he prescribed Omeprazole. His prescription database said be careful with Paz as it interferes with absorption so take it at night if you take Paz in the morning.

Hmmm, I want confirmation from Oncology and so asked Teresa to ring them in the morning.

Tue 11-Jun-2019

In the office, in the meantime Teresa contacted Oncology department about ant-acid pills they said all of them are Ok.

Wed 12-Jun-2019

Hmmm, I checked that assertion “they are all OK”, I don’t believe anything told to me without evidence so I did some digging. I checked for interaction on the Paz manufacturers database and it’s a no-no, so back to oncology – why is it US that have to keep on top of this – so dangerous if I take another drug for side effects that stops absorption of the only drug protecting me from advancing the cancer!”

At work at home. I knocked up some sort of curried beef without using any onion, flour, stock cube, …, somewhat of a challenge we will see!”

Fixed Teresa’s Email again – Windows on her computer (all new) seems to be determined to cause problems, but think I have better handle on it

Thu 13-Jun-2019

So, I completed my research, spoke to Oncology again and posted my thoughts on Facebook. For those that missed it (with spelling and grammar clean-up):

SCARY drug interactions!!!!

So, oncologist thinks some of the abdominal pain may be stomach acid related and suggested trying “Gaviscon” to see and if that worked try more targeted drugs.

OK, tried Gaviscon – major diarrhoea, so that’s a no then.

Rang up doctor and he suggested Esomeprazole but said that his database suggested it can cause problems with Pazopanib (my cancer drug) and should be taken at a different time of day (but not real specifics)

Hmmm, think I should check with Oncologist, Teresa rang up and get a message back – “antacids are all fine”. I was sure it wasn’t so I checked on the manufacturer’s information for Pazopanib and indeed Esomeprazole is a problem.

So, I spoke to someone different in Oncology and at first they suggested Esomeprazole but when I said that this seemed to be a problem they checked and agreed with me – AT LAST and suggested Ranitidine (aka Zantac) as being less of a problem.

Hmmm, I don’t trust the medical profession, so, though I shouldn’t have to I did my own research, thank god for the internet!

NICE (those people who control all drugs in the UK) have a database for drug interactions:

And I checked there for the two antacid types against Pazopanib and lo and behold:

“Esomeprazole is predicted to decrease the exposure to Pazopanib. Manufacturer advises avoid or administer concurrently without food.”

Not as clear as I would like but at least I can discuss further with the GP what it means, however:

“Ranitidine is predicted to decrease the exposure to Pazopanib. Manufacturer advises Ranitidine should be taken 10 hours before or 2 hours after Pazopanib.”

Ah that is clearer, so if I do anything, I will try Ranitidine but check with GP anyway.

What on earth happens if you are not awake and aware to be able to question the experts, do your own research, challenge them again and make REALLY sure what you are taking is safe with everything else.

I could just have taken the antacid, my body absorbed 40% LESS of the cancer drug and never known what harm I was doing until in 3 months’ time the tumours have grown!!!

I am VERY careful and read every single drug leaflet that I get – do you?

I check my blood pressure every day (at the moment twice a day) and discovered my blood pressure was far too low and I needed to back off my BP meds to get it back under control.

Pazopanib pushes blood pressure up but not always so I have to monitor BP – going to the doctor puts it up anyway (white coat syndrome) and anyway he can’t check it every day.

So, I am on reduced BP meds, prescribed by me (but checked with the GP so he knows and agrees) until my BP changes and I have to increase it again.

This is NOT self-medication I am not that stupid, but it is taking PRIMARY responsibility for my medication, because the NHS has not got the resources to do it for me.

I worry, a lot, about those that do not question what Doctors do and say, they aren’t perfect and we do THEM a disservice by acting like sheep and not equal partners in our care.

Wow, it seems I have got some writing mojo back, I’ll have to copy this into my blog 🙂

Bean

So, there you go, we are off to Gower Folk Festival tomorrow morning so too late to get a prescription for Ranitidine so will look out for it on the way in the morning.

Fri 14-Jun-2019

And off to Gower we go. New bed in the camper, now with a utility tent and not a full-scale awning, trying to travel with less “baggage” to make setup and tear down easier. There will be a problem for me and “loo in the night” (normal) if it rains as the tent is not connected to the van – though it will be right next to it. However, I have a lightweight mac to help and fingers crossed for good weather (it wasn’t!)

Set off 7:15am ish, stopped at Sainsburys for Xantac (Ranitidine) – you do have to check what the underlying drugs are in ant-acid’s, they vary, another one there was is based on Esomeprazole! I had already picked up some new leggings – my old ones were fine but my tummy no longer tolerates ANY level of tightness in the clothes I wear and so I need a couple of sizes larger – more baggy than I like (I like skin tight) but better for cold weather which we expected. They worked so I picked up another set as we were at Sainsburys anyway.

Next stop our usual at Cornwall services and then Taunton Dean for quick stop and then Bristol (Gordano) so Teresa could grab a quick sandwich from the Waitrose shop there. She is a fussy one over sandwiches that wife of mine, but I love her for it, I like a woman with her own mind. Massively packed at the services and hard to park so I didn’t loo but hovered.

Then Wales services (can’t remember its name, but it’s the one we usually stop at and yet again I drove in, took the wrong turning, drove out, back around the Motorway interchange roundabout and back in again for lunch and loo.

All the food I am eating (lunch and evening) was prepared at home, travelling in the fridge and eaten cold – more on that later.

We arrived at Gower around 2:30pm and all ok. We got a spot with power (which we had booked and paid for) close to the entrance. There had been some bad pitching by others arriving before us but we were early enough to sort out a slot for us.

The utility tent up in half hour – brilliant. Then rest of sorting not too difficult.

The evening was a ceilidh so I tried it a bit (not dancing in the buggy obviously, but listening to the music) but not worth stopping late and mega tired and Teresa had tried a sing around but it was too noisy for her in the barn where it took place so we had an early(ish) night.

One dose of diarrhoea during the evening so took an Imodium Instant (faster acting than standard Loperamide but massively more expensive and not available on prescription. However, when loos are difficult to use (like public ones) I like fast acting!

Second dose of more severe diarrhoea after going to bed, good job our own loo is next door in the tent, the camp site loos were far enough away I wouldn’t have made it!

2nd Loperamide (instant)

All quiet after that thank goodness

It rained heavily during the night but not when I went to the loo so all OK

Postscript

And so, we made it to Gower, the weather is not going to be great, but, …

Sat 15-Jun-2019

So, clearly blog didn’t go out so it continues.

Weather has been kind during the day and I managed to “sleep” until 8am (as opposed to my more usual 6am).

Sound tradition at Gower, the best act there (for us)

The lunchtime concert was OK, the evening less so and the “big act” useless for both of us and we had an early night.

We love Gower because it’s a single marquee and so you are exposed to all sorts of styles that you may not choose but can be discoveries at best and a pleasant listen at others.

This year’s Gower was, for me, more “I don’t like this” acts than the previous year, but that will happen. The bigger problem is that instead of being in a small marquee the workshops (including sing arounds) was held in the food barn (the small marquee was cold and wet apparently). A lovely space, full of birds singing their hearts out and very echoey. For Teresa it was impossible to hear the others singing or enjoy herself, so instead of disappearing for a lot of singalongs she was with me for the concerts and liked even less of the music :-(.

It won’t be our greatest Gower, but then that’s the way it goes when in the main they are booking small acts that you don’t know.

One big complaint I have is that many acts “bio/blurb” is REALLY inaccurate and NOT a reflection of what they do and that is disappointing.

Sun 16-Jun-2019

No more diarrhoea overnight, a lot of rain, but again missed in the loo breaks :-).

Packed up the van in dry weather – mainly Teresa doing the work. The wind caused some fun getting the utility tent down but we managed

Last day, poo quieter.

Again, very curates’ egg in terms of performance/folkyness. In the evening 1st act was good, 2nd was OK, third was OK but not Teresa’s cup of tea, perfectly pleasant but not worth staying for when we have got a long journey, so we went to the van around 10:30pm and on the road by 10:45 (just load the buggy).

Mon 17-Jun-2019

An hour or so’s sleep (2ish to 3:30am with loo trips) at Exeter Services (no other stops), a double espresso for a caffeine hit to keep me going (only coffee I ever drink) and then the rest of the journey.

Home 6am (ish) and to bed, awake about 8:30am, long afternoon nap.

All ok (ish) on the poo front

Tue 18-Jun-2019

All normal – not travelled to Penryn – being sensible, we know I will be tired after the drive and whilst I may feel OK it will take very little to push me back to exhaustion. But working at my day job all the same

Wed 19-Jun-2019

Two normal (ish) poo sessions followed by one less and then one more barney like – took loperamide.

Thu 20-Jun-2019

Last night was a really odd one for dreams.

It started with me dreaming of the moment of my death, feeling the world close around me, reaching my hand out to Teresa as I felt my world recede to a dot (like old fashioned tube televisions did when turned off). Immediately followed by hearing Teresa giggling at me and the most surreal life after death scene.

I’m not upset by the dream, I am REALLY pleased that my subconscious felt I was ready to consider death in detail, I wasn’t and am not distressed by the dream. Indeed, I think that 18 months after diagnosis to have been able to process all that is happening to me to that point is a sign of me having come to terms inside as well as outside of what is going on.

Still pisses me off immensely of course, but there is a bit of acceptance alongside, my head is most definitely NOT in the sand.

Fri 21-Jun-2019

One problem I had at the festival was that all my food was cold, now I do like cold savoury food, but it was MUCH less welcome when it was already cold and miserable outside.

One thign I discovered after we got back is that the chicken and pasta meal I had made – and was eating for lunches was MUCH nicer with some added water and a spalsh of tobasco – totally change dit. So, in a trial for future festivals, warmed up such a mix in a pan on the stove and oput it in a “lunch” thermos to keep warm till lunchtime. If that works, I can do it in the mornign at the van before going into/down to a ferstival and not need to rush back for lunch. Fingers crossed. Can prob do that with an evening meal as well.

Postscript

One of the things I did differently this year was hot water. We get through quite a few kettles worth:

  • Morning tea and coffee
  • Fill my hot water thermos for hot drinks during the morning
  • Washing Teresa and I manage on one kettle’s worth – just
  • Washing up

Since the hob in our van takes 10-15 mins to boil a kettle that is crazy. This year I invested in a “furnace” designed for mountaineers to boil snow in freezing temperatures, quickly. It was VERY expensive, but 3 mins and over a litre of water is boiling. An excellent investment, especially if it raining since the job needs to be done from the outside and the les time the better (even with the back door open as an umbrella, the sides are exposed.

We also used much smaller water and waste water containers which reduced the amount of “stuff” in the van.

I think we are getting to a better way of doing things as time goes on (not that I have lots, but well, you know, …)

AND the blog is published, sorry it’s taken a while, writing got very “blocked” for a while, not so much the writing process as some think it was, it was the “fuck writing I am dying, who is interested in this anyway” type of blockage.

And I really do not mean any offence to those of you who read this, but I have always wanted it to reach much further and to help more people but it doesn’t and I get depressed over that – sometimes severly.

The Bean, Pendeen, 23-Jun-2019

Not so much poo, a lot of fatigue and medical tests 18-25-May-2019

On our way to Manchester, nice Teresa smile

This blog may give you some clue as to the lengths we are going to try and get the poo under control, but don’t try to second guess us, it’s not quite what it may look like, but we want to keep our powder dry until we are sure especially since this weekend was a major setback.

Sat 18-May-2019

We need some shopping so I went to Sainsburys so Teresa can do wall painting/cushions. Of course, by the time I was back I was tired so rested.

After my afternoon nap I made some onion free tomato chutney.

Still got bad diarrhoea – Loperamide

Sun 19-May-2019

Not awful this morning, nothing else, very tired

Made chicken/pasta (sort of) meal – no onion, no tomato, no garlic

After my nap I sorted out Teresa’s cushion measurements, they are now accurate 🙂 I love Teresa to bits but her spatial/measurement skills are not great (rubbish), but I didn’t interfere while she did her thing and then helped sort it out when she was ready. Mind you easier for me to “fix” her mistakes than get it right in the first place but as a quasi-male I couldn’t possibly admit that could I? Oops I did, ah well 🙂

I wanted some more flapjack for “snacks” but Teresa too busy, so I sorted myself. Now that should be NO big deal but I’ve never done “sweet” cooking before and it was mega stressful. Logically that is stupid, flapjacks are easy, but autistically it is something different and a nightmare of stress. I realise this won’t make sense to you unless you are or live with an autistic, but trust me, rows can grow from something so trivial.

It didn’t but it was tough all the same, Teresa, bless her, came in a provided some comments and encouragement and that got me over the finish line. Darned nice flapjacks too 🙂

Mon 20-May-2019

Moderate diarrhoea in the evening, took Loperamide

Tue 21-May-2019

A good day in the office today, best for some time.

Almost no poo in the morning, regular Diarrhoea this afternoon – no worry. Bedtime – severe abdominal cramps, major diarrhoea, a deeply unpleasant 20 minutes on the toilet. Loperamide – obviously.

Feels like our new “regime” has failed disastrously, but we are not ready to throw in the towel yet, we need time to see how things proceed and tweak, so far, we have explanations for problems.

But however positive you are it was not a great evening

Wed 22-May-2019

Digestive track not too bad today, maybe we learnt something new over the weekend?

Thu 23-May-2019

Voted in the European elections, digestive track a little happier still, fingers crossed?

Tomorrow is CT scan and assignment results, could do without the stress especially as I won’t have access to the assignment results until I get home from the scan. No stress there then?

If I pass the assignment, I get a PgCert in autism studies, so it’s not just another exam, it’s also the gateway to the 2nd year of the MA, failure means I don’t proceed and wouldn’t want to as I did the best I could, given my current limitations.

Fri 24-May-2019

Hmmm, CT scan easy peasy – lie down, quick needle in the arm, hold your breath for 15 seconds, move your arms, wait another 10 seconds, job done! I’d arrived 45 mins early and was out 15 mins before I was due to go in 😊

Mind you, one hell of a bruise – compare it to the pinpricks in the last Blog!

Lots more colour than it seems here!

That pic was taken 10 days ago, still plenty of colour this morning!

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

However, assignment results still not available (4:50pm), apparently maybe not until 6pm. Last time it was around lunchtime, so you can imagine the stress and tension in waiting, especially knowing it’s a bank holiday weekend so if late, may not be until Tuesday!

Apparently, the results came in around 9pm, I was asleep and saw mine around 2am. The feedback was right, the mark was decent, I cannot complain. I knew I hadn’t done a good job, but apparently, I hadn’t done an awful one, quite content. As an autistic I prepare myself for the binary (abysmal fail or total excellence), this wishy-washy middle ground is hard to process!

Only real criticism I have is that the results were very late but there was no explanation from the University that a) they would be late and b) why. “Stated” policy is that they should be done by 6pm, so 9pm was a long wait for all the students.

Postscript

Hmmm, this should have been it and I publish over the weekend, but things got on top of me, so here is next week too

The Bean, Pendeen, 26-May-2019

Sat 25-May-2019

We are off to Manchester tomorrow for the Autistic UK, “The future is Gold”. The worry about the journey, the hotel, the event and getting home again is more than sufficient to paralyse me. Plus, the after effects of the CT scan are never far away.

Nothing happened today

Sun 26-May-2019

Left at 9am, arrived 6pm, 360 Miles later. The hotel was fine – though not up to Teresa’s standards as she repeatedly communicated :-). Still a couple of gins inside her and she mellowed out a bit. There was a wedding in the hotel that night and it wasn’t the most restful, but I got an OK night.

Mon 27-May-2019

Got to the venue OK, everything was organised for me in my mobility scooter, couldn’t ask for better.

The venues audio was rubbish, in particular they had set up their mic’s so that there was a constant low-level low frequency feedback hum. It had me (and a number of others) crawling up the walls. Autistics often have noise sensitivity and low frequencies are mine. In the end I was forced to leave the hall, in tears and retreat to the quiet room (they specifically have one as is normal at autistic events) until the problem was sorted. The organisers did their best, but the venue was just incompetent, no need, the fix was to move a mic, not exactly rocket science and could have been done 45 mins earlier!

The venue also excelled itself by putting the disabled loos off a narrow corridor with a tight turn to get into the corridor and another into the loo. I was walking (staggering) so OK, but those in wheelchairs faced an impossible challenge.

What is worse they had moved the disabled loo from somewhere with easy access to that location!

Oh well, the conference itself was brilliant, I went up there to hear Steve Silbermann of Neurotribes fame and it was also interesting to hear my PGCert supervisor (Luke Beardon) talking to a non-student audience.

A conference organised by autistics for autistics, brilliant.

As for flappause (google it), is there anything cooler?

Left 4:30pm, home 1:30am, shattered, crashed into bed

Tue 28-May-2019

Awake 8:30am and took it easy for the rest of the day, except in the evening we needed to move the buggy from my car to Teresa’s, that exhausted me.

Wed 29-May-2019

Blood test 8am and then into Truro to meet ex-wife (#2) we still keep in touch, as much to talk about the children, but I like the fact that divorce doesn’t have to leave a bad taste.

Got home exhausted and crashed for the rest of the day

Thu 30-May-2019

Phew got some work done

Fri 31-May-2019

Venesection at 9am, particularly affected me and indeed after I’d had my BP meds in the evening, I was not safe standing up due to low blood pressure – not surprising having had a pint of blood taken out.

Otherwise just an exhausted day.

Postscript

So, last week just disappeared. The diarrhoea is a long way from being gone but it is more manageable nowadays, I think we may have a handle on its worst excesses, keep monitoring.

This was an intense period:

  • Fri 24th May CT scan
  • Sun/Mon Conference
  • Wed 29th May Blood Test
  • Fri 31st May venesection
  • Tue 4th May drive to work. Why does this matter? Because on the way I need to fill up Angelique’s tank. This is what I had done on the way to work that fateful day and I still get a powerful emotional jolt when I have to do it – I usually try VERY hard to avoid it but at 1:15am last Tuesday on our way home from Manchester I just didn’t have the energy to stop and start again and she is running on fumes.
  • Wed 5th June, scan results, can’t be stressful, can it? All the abdominal pain of late “must” have a non cancer explanation? Hope won’t make it true, fear won’t make it false. It will be what it will be, but it remains stressful
  • … Now we know, panic or momentary relief?

The Bean, Pendeen, 03-Jun-2019