Month: July 2019

Drugs, Blood Pressure, a Frock and a nice meal 06-13-Jul-2019

Sleeping at the bottom of my bed, all together, …., aaaahhhhh

Sorry, blog is running late, but there’s a lot going on for me.

Sat 06-Jul-2019

I drove Teresa to Litfest this morning (their last day) and will collect her this evening after the “party” at the end of the festival is over. Lets her have a drink.

On her instructions I had made flapjacks for the litfest committee to remind them I exist. She forgot to take them in. She suggested I FB a picture of them and she would repost that. I felt a total idiot, apparently it’s an NT (non-autistic) social thing to do, makes no sense to me, so I did as I was told, I will never understand you lot (any more than you understand me)

Reduced blood pressure meds again, now down to about 1/3 of what I was on and also same as what I was on before starting Paz. See Haematology consultant on Tuesday who will, I hope, confirm that bp drop is because blood is thinner after all the venesections. Some research with “Dr Google” suggests that the two are linked but I’d like confirmation from the horse’s mouth. The alternative that’s it’s because the cancer drug is no longer pushing it up is worrying. It is one of the common side effects and “anecdotally” a good sign the drug is working, so, if BP goes down then, … The trouble is “anecdotally” is all we have because there aren’t enough of us take the drug for it to be worthwhile doing the research to see if the two facts are related (no longer raised BP means drug not working) all they seem to know is “usually” BP goes up and “side effects change over time”, which sounds like “ we haven’t got a clue to me” :-). Hence, I do my own investigation and will talk to that haematology consultant on Tuesday. Normally I’d see him on my own but asked Teresa to come along this time as I easily get derailed and forget what I wanted to ask, side effect of autism, so long as I am on the path I planned all is well, but I don’t change tracks quickly – I do change but it takes time and time is one thing you don’t get with any medical person!

Also got quite a lot of work-work done today to make up for lost hours

Oh, and the certificate confirming I got a Distinction on my PgCert for Autism studies arrived today. The jury is still out as to whether I go to the graduation ceremony, Teresa is not bothered but surprisingly my son would like to go and I quite like to go as part of my “fuck cancer” campaign 🙂

Sun 07-Jul-2019

Not sure what happened today other than a bit more work

A sufficiently bad diarrhoea attack for 1 loperamide.

Mon 08-Jul-2019

Just the day job

All poo is constipatory at the moment, so the new diet is clearly doing something and so today went wild and had six strawberry’s for tea – well not FOR tea but as part of tea 😊. First fruit for ages and very welcome.

Tue 09-Jul-2019

Into the office, then onto Haematologist (via home to pick up Teresa).

First question I asked was “can my drop in blood pressure be explained by the venesections (“thinning the blood”? ). Short answer “I have no idea”. Hmmm, that doesn’t work for me! Dr Google says there is research that it does, but clearly that is outside the scope of the Haematology Consultant!

My haematocrit remains high – higher than last time! As does the haemoglobin. So, we continue with the bloodletting. To me, it seems that the cancer is trying to push it up faster than the bloodletting gets it down. However, the actual levels of both are “not for concern” apparently.

I wasn’t altogether happy with this so rang up our cancer nurse and she remained confident that the effect of the cancer drug on blood pressure can vary over time, so the blood pressure dropping is of NO concern.

I am sure they are both right, it isn’t a problem, but I am a scientist and autistic I like HARD provable facts, not opinion. Treliske is NOT a specialist unit for Kidney cancer it is handled by a team who cover a number of different cancers. As such they are not as expert as I would like, however they are what I have without going to a different centre, second opinion, …, all of which really complicates things.

So, I will see what the next results show, if indeed they confirm no growth then I will stick as I am, if they do show growth then I think it IS time for a second opinion. Hey ho!

This is not a criticism of the unit itself, they are very good, but more a case of me needing more information than they have and wanting to know if someone else has better knowledge because they specialise in my cancer more?

Wed 10-Jul-2019

Just a long solid day of work at home

Thu 11-Jul-2019

We have a door bell stuck to the back door whose signal is picked up by a mains powered bell in the kitchen and another on the landing upstairs.

It is clear the one upstairs had stopped working. However, it did work when plugged into the kitchen.

Hmmm, sounds like the battery in the bell push is going and not able to reach upstairs. Time to change the battery and all is fine.

So, what you may ask, well Teresa knew the upstairs one wasn’t working but not why or what to do about it. So, I explained (not “mansplained”) because the next time (a few years from now) I may well not be here to deal with it. I hate having to make preparations for when I am dead, necessary as they are 🙁

Got a date for graduation of my PgCert and contacted Teresa (well contacted is the wrong word for her, told is better 🙂 ) and my children (contacted is the right word, they don’t live at home and so Email is appropriate 🙂 )

Apparently the two offspring want to come and Teresa is indifferent but will come to support me, but if I want to go and both children do and I can only have 2 tickets she will go shopping while it’s on. Not sure I want that, but I can’t say I blame her – she attended both my children’s graduations because I was unable to go and was bored rigid at both so I can understand her not wanting to do another 😊

Fri 12-Jul-2019

I may not be emotionally spontaneous all the time, but coming back down the A30 as we would be from M&S at Hale, at the right time, on our way to Sainsburys, then, …, I know this “pattern” a suggestion of lunch at the Gurnards Head would go down well with Teresa as a nice spontaneous thought.

So, clearly, knowing that, my need for consistency and rules mean that was exactly what I was going to do.

However, with the hassle of the traffic lights at St Erth causing long tailbacks, I wasn’t going to make the suggestion if we got caught up in that because we would be too late for lunch.

Well, it was bad but we got through and so I suggested to Teresa that there was always something that I suggested at this time.

She did not get it! However, when I explained she most definitely did and yes please. So, we got to Sainsburys, booked a table and had 45 mins for a quick shop. No problem. It wasn’t until we approached the till and the lights went out. The lights came back but the tills didn’t – they had a power cut. The tills were “re-booting” but taking a long time.

I was feelign poorly and went back to the car, so, 20 mins later, did Teresa sans shopping apparently some tills were back, hers wasn’t. Really Sainsburys surely youcan do IT better than that????

So, she left the shopping and we were to return later to collect.

All well at Gurnards, when we booked, they asked for “dietary needs”, Teresa told them “Gluten free and no onion or garlic” as that is a good first approximation to my diet.

On arrival they had hand edited a menu to highlight any issues.

As it happened, I was left with not enough to get excited about, so I took some loperamide and gently relaxed some of my restrictions – it worked.

We had a lovely afternoon, they even delivered a gluten free bread thing which was just a nice touch, Yes, I know easy to do but I didn’t ned to ask it just turned up when their pre-prandial bread board was delivered.

Sainsburys, shopping collected and home around 5pm. A long day, I was exhausted and that was that. We had a good day. I will have to work over the weekend to make up for the lost day, but, that’s fine by me.

Oh, and the pic is the new dress we went to M&S to pick up :-). I do tend to stand like a (bad) shop front dummy, I have no control over how I arrange my body (or face for that matter), oh the joys of autism. I am much better moving.

Postscript

This blood pressure thing worriesd me, I like stability, something that can either cause me to faint or give me a stroke not behaving itself worries me and when I say worry I don’t mean “oh dear”!

The Bean, Pendeen, 14-Jul-2019

Sat 13-Jul-2019

Exhausted, slept before lunch, after lunch and in the evening – catching up on the fact that I didn’t get any daytime sleep yesterday and had (for me) a really busy day out.

Sun 14-Jul-2019

Thank you Judith for posting this link to Facebook: How to survive the fake news about cancer. I see all sorts of cures posted on line, I also get well meant suggestions from people I meet. I listen and I think, but I am oft reminded of snake oil and stay sceptical without solid evidence (of my own eyes).

Investigating dodgy wiring – got Landing and front porch working but my office and downstairs loo still problems. Oh well, more to try nedt weekend!

Mon 15-Jul-2019

Another bad night, a lot of waking followed by heavy sleep, bad dreams and awake again – it is exhausting!

I attended my own funeral (well not me personally, however, …

It is an interesting idea and one I quite like the idea of, not sure if anyone but me would turn up, so maybe I don’t want to do it 🙂

Otherwise just normal work

Tue 16-Jul-2019

Into the office, exhausted from another dodgy night

Checked my BP before takign my 6pm meds – wow 150/101 that’s WAY over what is safe, expecially for diastolic. Took my full complement of BP meds and by 8pm it was only high. So much for LOW BP worries. BP was a “little” high this morning, but nothing to cause a change in meds. Such a rapid change!

Wed 17-Jul-2019

BP is not quite there yet so taken full morning complement of meds and took full evening complement too.

A bad diarrhoe attack, but a bit of Loperamide and all is well. That seems to happen once or twice a week. Never the awful 2 or 3 times in a day and loads of loperamide that I used to have. This diet, difficult as it is does seem to work.

I think todays trigger was cheese – cheddar chesse is NOT supposed to be a fodmap problem for lactose, but it has been linked to the last few attacks of diarrhoea so I’m going to have to eliminate yet another nice food :-(. There are some vegan  alternatives that I can explore and I will do, last time I had vegan cheese some years ago I hated the taste but apparently it is a lot better nowadays.

Thu 18-Jul-2019

Things do seem calmer on the BP front. Had a venesection this afternoon and as usual my BP drops and I need to back off the meds again

Fri 19-Jul-2019

Well BP seems quieter and also had a chat with the GP and going back to the usual cocktail but sticking with 4mg Candesartan twice a day and not the 8mg twice a day I was on and “monitor”.

So, the GP’s opinion of good is around 130 systolic (as I’m “old” he sees no point trying for 120 because BP goes up as you get older and arteries lose elasticity. Diastolic he wants under 90. As a rule it is diastolic for me that tends to be the difficult one to control so we will see how it goes.

Also discussed the (lack of) effectiveness of the blue pills (viagra) and he said that until you’ve taken about 12 doses in reasonable proximity you won’t know it’s full effectiveness. So, apparently more frequent sex! Fun as it is, not as easy as it sounds when all I want to do is sleep at the best times, it’s really no fun when one of you is exhausted! One of the consequences of this stupid disease (at my age) that nobody talks about!

The stomach acid stuff – he’s sending me some stronger prescriptions for Ranitidine (twice what is in Zantac as you need that much for it to last all day. Hmm I remain unconvinced about using it, but if I have it I can experiment.

And at long last Naproxen (pain killer) is available again. I don’t take it often but it’s great to control the pain on the left hand side of my face. Take it for about a week and it goes away for over a month.

A very drugy conversation with the GP this morning. It was all on the phone, nowadays our GP only calls you into the surgery if he needs to physically see you, otherwise it’s a phone call. Works great for me as all I usually need to do is disucss my drug consultion and he seems to like being able to review it from time to time and gets more opportunity this way.

Postscript

Sorry this is two weeks in one, don’t know what happened last week, it was all ready to publish and I just didn’t get around to it! Doing that electrical work on the Sunday didn’t help as it wiped me out. Which is worrying because I have more to do this weekend when I will be using a signal injector to see if I can identify where the wires to the downstairs loo and office run from and to and why they don’t seem to be connected!

In general I am ok, fatigue is being tough, but the new diet, boring as it is, is doing wonders for controlling the diarrhoea. If I can get the BP back under control then it’s just (just is really not the best word, humungous is better) fatigue to cope with.

Final apology, for some reason WordPress is not spell checking this so the chances are both the grammar and the spelling are even worse than normal!

The Bean, Pendeen, 22-Jul-2019

A new way of eating – 29-Jun-2019

One of my fav frocks

Sorry it’s a bit late!

That pic is me at Stithians yesterday, one of my favourite frocks – beats the miserable cold Bean pic taken at Gower just a few weeks ago that was in last week’s blog!

Sat 29-Jun-2019

Mainly recovering from yesterday at Stithians, so not a lot happening.

Teresa was on a stall at Golowan today, to make parking easier I took her in in the morning and collected her in the afternoon.

Golowan is not so much fun (for me) unless I’m taking part and I no longer have the energy for that.

A Sainsburys shop afterwards to get food for me to cook for during the week since Teresa won’t be around

Got some potato skins and gluten free fish in “breadcrumbs” as a test for a “cupboard” (freezer in this case) meal. Had it for tea, worked well, will have that during the week. Also got some gluten free scampi will also try that.

Sun 30-Jun-2019

Made some flapjacks as run out

Made my chicken, pesto (well just basil actually) and pasta meal – good for lunches

Mon 01-Jul-2019

Ooops forgot to book some blood tests – quick call to the surgery and got the urgent one booked for tomorrow morning – need the results for seeing the haematology consultant next Tuesday – 1 week is just enough to make sure the tests are done in time.

Made my “pseudo” chilli con carne (using tinned chick peas as they are least problematical to digestive issues)

It will need to mature for a few days before eating

Experimenting with Xantac (ranitidine), taken in the evening to see if it does make a difference to the stomach pains

Tue 02-Jul-2019

Blood test ready for haematology consultant next week. Arrived 1/2hr early and was slotted into an empty gap and was home before the appointment was due – result!

Not in the office as blood test timing didn’t fit

Hmmm, a severe diarrhoea day today, ended up with two doses of Loperamide.

Wed 03-Jul-2019

Nil Poo

Went into the office as usual, but a fair amount of stomach/abdominal pain meant I left late morning and had lunch at home.

I suspect it’s just the abdominal consequences of so much loperamide yesterday, but, …

Thu 04-Jul-2019

Nil Poo

Fri 05-Jul-2019

Ok, the system restarts and is enthusiastic but not diarrhoea’ish during the day.

Blood pressure continues to be low so deleted the evening Moxonidine

Verdict – the ranitidine does not seem to have any material effect on the stomach pain on eating, so will stop taking and consult with GP next week

Postscript

This new diet of mine is “inspired” by the issues people with IBS deal with, some people manage it with a Fodmap diet. We didn’t go 100% into it but adopted most of its guidelines and adapted for things we know are a problem for me, so:

  • Gluten Free
  • Lactose free
  • Onion and Garlic free
  • Veg and fruit free (specific problems for me) – which along with meat being safe means it is NOT a vegetarian (or vegan) diet

A challenging diet to cook for, but fortunately there are, nowadays, products that help – gluten free pasta is OK, rice is safe, there is Lactose free ordinary milk (as opposed to vegan milk substitutes as I prefer the taste of milk). Rubbish biscuits – hence my flapjacks, …

Things are now more likely to be constipation than diarrhoea but about once or twice a week there can be diarrhoea but nothing like it used to be. Once I’m sure we understand what’s going on I will try and add a little fruit/veg, being careful of known Fodmap triggers.

As a plan it is working

On the other and this reducing need for BP meds is VERY worrying – it could be for awful treasons – the cancer drug has stopped working and tumours are actively growing and it’s another 2 months or so before I get any info on that!

Or,

It can be a result of the blood thinning that happens as a result of the venesection.

Clearly, we MUCH prefer the later and I will specifically ask the consultant as to whether it could be having such a drastic impact when I see him next Tuesday.

It’s easy to assume it MUST be good news, but preparing for not good or neutral is part of my way of dealing with the inevitable bad news that will at some point arrive. Being prepared takes the sting out of things and it is ALWAYS nice to hear things are better than I feared :-). That’s my way of coping, others do it different, horses for courses I say.

[UPDATE] – more next week, but the verdict is that the lower blood pressure is “probably” not caused by the venesections and is also “probably” nothing to worry about in terms of effectiveness of cancer drugs, so that’s all right then?

The Bean, Pendeen, 10-Jul-2019

Saturn V lift off – 22-Jun-2019

Oops, a tad late but it’s here now 🙂 , even later because the website host wasn’t working for a while – sorry, that bit is out of my control

That picture should have been in last week’s blog as it was taken at Gower – see how cold and miserable it was – this was taken in the barn where the food, drink and singing stuff (that Teresa struggled with) were held. It was warmer in the main marquee but not a lot – just less drafty (which is why I have a hat and a hood up!)

Sat 22-Jun-2019

In the afternoon felt bored and fed up and so got my act together and started building my Xmas present Saturn V Lego set.

Why has it taken so long, yes, the PgCert (which incidentally I got a (just) distinction for) took a lot of my time, but the truth is that I am suffering from a lot of “why bother” inertia and getting past that can be difficult.

Sun 23-Jun-2019

In the afternoon finished the job

Mon 24-Jun-2019

Out of the blue bad diarrhoea – not as bad as before the new diet, but enough to take Loperamide and have 2 loo trips in a short space of time.

Tue 25-Jun-2019

In the office in Penryn but nothing in the loo department

Wed 26-Jun-2019

A little in the loo department but fairly constipated!!!

The Brighton tailor whose identity became his business

Totally agree, before I dressed (publicly) the way I do now, I refused to get married “boring” posh or indeed casual and hence the outfit below made for me

Not the best pic, you cannot see the magnificent sewing on the waistcoat, I slouch awfully, …, but it’s the quickest I could find, sorry. The guy at the back on the far right is our friend Bon who died (last year I think), far better posture than me!

If I were to marry now then, like Teresa then (who made her own dress in red and gold), I would wear a dress (though not a white wedding dress – that is so stereotypical for cross dressers which I am not, but people think I am)

Thu 27-Jun-2019

Hmmm, BBC 1 news this morning talking about Transgender hate crime. Which is awful, no argument. But what environment are they shown in – a club, lots of lights and music. Most events organised by the Beaumont Society (google it 🙂 ) are of that type.

Fine, but it is very stereotyping by its own community. I know an awful lot of gay people and they don’t all love gay bars; they often are just quietly getting on with their lives like everyone else. The same is true for Transgender, Transsexual, Non-Binary (me), even cross dressing.

I get deeply distressed that normal people (who happen to be LGBTQ…) somehow are expected to “perform” a certain stereotype. For those that do, great, but let’s not ignore what is, I suspect, the greater proportion who just get on with life outside of anyone’s radar.

As part of my Autism MA, my 2nd essay was about hidden autistics, those that aren’t diagnosed, don’t even self-identify, they just got on with living their different, but fine by them, lives. Nobody researches them because they have no way of finding them. Same with LGBTQ…, research looks at people who can be found (and have no problem being found) it doesn’t touch what is, I proposed in my essay) the below the surface part of the iceberg.

Oh well, I shall continue talking to myself :-).

Fri 28-Jun-2019

The company I work for celebrated their 50th anniversary at Stithians showground. Despite it being full of people (the show itself is not for another week, but just the number attending the event is far too many for me), I wanted to be there and they let Teresa come along as my carer (which makes the whole event a lot easier for me to handle).

I could have put a pic of me here, but I shall save that for another time, I liked these pics of Teresa much more

Unfortunately, I had a venesection that morning so I went to West Cornwall Hospital for the vampires and then back home to collect Teresa and my food. The diet I am on is so difficult that it was easier for me to take along my own rather than faff with the menu options for stuff that worked.

Anyway, all was fine, it was mega noisy there but I’d taken along my noise cancelling headphones which reduced the level of noise to “manageable”.

After the main course (around 1:45pm, I was so tired I needed to have a nap so missed all the speeches (sounds good to me 🙂 ). Was gone for an hour and a half or so. Didn’t really sleep but was well rested.

The entertainment was a “circus”, they seemed to be a local “troupe” (Cambourne got mentioned). Bit of a curate’s egg act, more amateur than professional but good fun and definitely warmed up as the performance went on.

Still by 7pm I had had enough and we went home.

Postscript

And another week passes, the poo stuff is somewhat under control but still breaks free for no apparent reason but nothing like as often as it did. It was nice getting out with Teresa to the works do, tough and exhausting but look at those pics, I so like seeing her smiling.

As for the Saturn V, I feared I would never make it to the 50th anniversary of the Apollo 11 moon landing, looking pretty good so far, having my Saturn V built helps me remember – I made an Airfix version all those years ago – so many of them. How little I understood what the future would bring.

Next week will bring the odd reflection of some of the things that I wish I could do before I die but are no longer possible (for all sorts of reasons). I’ll say it then but I also say it now, do NOT put off what you can do today, tomorrow is not guaranteed!

The Bean, Pendeen, 03-Jul-2019