Letter from the North

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

4 Comments

  • Kate Mole

    Your day-to-day existence sounds very complicated, Bean!
    Love,
    Kate.

    • Bean

      Sorry Kate, it’s been hell of late and I never saw any comments. The need for control (from my autistic brain) of itself makes my life difficult, adding managing cancer, …, well it is a lot and can get on top of me, hey ho 🙂

  • Gill McNeil

    Thank you for for posting your blog, Bean!

    I find them so informative and stimulating.

    Take care,

    Gill

    • Bean

      Thank you Gill, sorry it took so long to approve your comment, as you will see from Warwick Part 1 (and Part2 to be published in a few days) things have been more difficult than usual (and won’t improve for at least another fortnight :-(, but more of that in future blogs.

      Teresa told me that you had been reading the blogs, always nice to know who does.

      Bean

  • Write a Comment

    Your email address will not be published. Required fields are marked *

    This site uses Akismet to reduce spam. Learn how your comment data is processed.