Letter from the North

Fatigue, poo returns and a birthday – 12-Jan-2019

Burli looks cute when asleep, but this picture taken by my son shows him “appearing” to be bright and alert, oh how the camera lies 🙂

Sat 12-Jan-2019

Being stupid after the exertion of yesterday I decided to make my Delia
ragù (I’ve talked about it before). This was in the time before I went off to the station to collect my son.

That was two hours of standing, I was shattered and after collecting him it was a quick lunch and to bed.

On waking, I avoided doing anything and had a bit of natter and gave son his Birthday presents.

Absolutely normal poo during the day, however after tea, diarrhoea quite bad – why???

Sun 13-Jan-2019

Normal poo, hmmm!

Today we moved daughter’s old sofa from the shed (so it could be collected by the council, like the sitting room sofa). It was a bucket brigade process to get access to the sofa as it was blocked in, we got it out, onto the drive (with Fridays Sofa), then all the stuff back.

I am already past exhaustion, but we also needed to get a set of draws from my office – not used since before we moved to Cornwall. Rather heavy so we needed to take out all 24 draws (only 6” or so square and 10” deep), carry the frame out to the drive and then put draws back in. Son and Teresa did all the heavy work, but I still had to do the spatial aware bits (with sofa too) as they can’t be trusted not to smash into fragile stuff!

Within half hour of putting out the draws there was a knock at the door and someone wanted them – excellent, off to a good home rather than council recycling wagon.

I am so far past exhaustion it is scarey.

Diarrhoea again, not severe but defo present – this was after 24hr pork (my son’s constant request for Teresa to make) which included Brussel Sprouts – green so probably the cause but it was not too bad.

However, for the last TWO days no Benecol yoghurt drink, so I think that’s a contributor, will pop it back into the menu today if I remember and see what happens!

Today was (delayed) Christmas day with son, which was nice.

Mon 14-Jan-2019

Constipated all day, the same tea today as yesterday, whoosh, that was not the last such visit during the rest of the day, the big D is back! Additional sessions at 2am, and in the morning and at work on Tuesday and when I got home from work. The big D is definitely back!

Tue 15-Jan-2019

Woke up crying again, that’s the fourth time I think in the space of 1-2 weeks, there is clearly a message but …

Totally exhausted, the fatigue is bad, is this the weekend with the Sofa’s, …, catching up (well it had already caught, but staying caught) with me?

I got home from work and didn’t know which way was up and went to bed. Early tonight as well. Poo? I was too tired to remember.

Wed 16-Jan-2019

Well, you’d think this would be a happy day, it is after all my 64th Birthday. Surely, it’s great because a year ago there was no certainty I would get this far.

Yet, I am here, but there is less certainty that I will make the next.

Last year my main memories are of worrying about the cancer and some symptoms from the drugs, mainly taste. However, the major problem was the massive pain I was suffering and the lack of use of my right arm.

A year on, the shoulder is a constant nag but not a major issue, but the drug side effects/cancer, that is so much worse.

My abdomen feels like a punch bag, sometimes pain, more often a deep ache just shy of pain. The fatigue, god it is awful, worse I’m not tired (as in sleepy) but I am so exhausted I cannot do anything.

So, is it a good day, well any day I am still here is a GOOD day, no question. Am I pleased to have made it, you bet I am. Do I feel positive about the future, no I don’t. The chances are I will make it a year (but it’s a long journey to 2020, to be able to hope for that much), but the cost to my body and will power of that year, that bothers me, it’s been a tough year to get here, I cannot imagine next year being any easier.

Even if Paz continues to be effective, the side effects accumulate, it’s like a poison building up in your system, indeed that is exactly what it is, a poison, just hopefully a sub-lethal one to Bean’s and a lethal one to kidney cancer cells?

I am more likely to cry today (within drops as I write this at 7:15am) than laugh, but at least I have the option.

On a (not) lighter note 🙂

After the accident the NFU were pretty good in settling the claim for the loss of the Landrover. They also pay for a legal companion to pursue a claim for compensation. Now considering that, over a year on, I have limited use of my right shoulder, ongoing pain, the driver was prosecuted for driving without due care and attention, …, that a reasonable claim would not be difficult.

However, the legal company appointed by NFU appear to be useless and over the space of a year have managed to achieve very little. I will (probably) get something, but considering what I went through, a derisory amount.

I am the point of having to consider alternative legal counsel. I don’t want to do this, but right now I need a decent second opinion, so if anyone has any suggestions for a professional solicitor who knows what they are doing and is not going to try and fleece me, I would like to know.

11am and back to bed, too tired, had to take the day off sick

Lunch stilton puffs then back to bed again

Up around 4pm and over to the North, on my own for 45 mins doing some referencing for assignment. Then Teresa arrives then son. Two halves of tribute (no PJ) and a Chicken and Scented Cumin curry (mild as I don’t handle even medium any more) All very nice. Felt like people had missed me which was nice especially considering what an oddity I am in that world. Of course, some just ignore me, but that’s fine too, I ignore them 🙂

Poo been too effusive today, carrying on from yesterday, constipation a distant memory.

So, staying off yoghurt and Benecol and see what happens.

An awful lot of hot/cold flushes, flipping sometimes every few minutes

Thu 17-Jan-2019

Up a bit slower today and nearly 8am before getting to my office, however I suspect I am going to have to lose today as well as I still feel very tired (indeed I did, that’s a second day off sick).

This fatigue is really tough to handle, I guess the body is using a lot of energy coping with the drugs and the cancer and it doesn’t have much left for Bean!

My DSA laptop and gear is due for delivery today, no use for this assignment but hopefully for the next one (that starts in the beginning of February!) and assuming I manage to complete AND then pass this one.

Tried to sleep at lunchtime as I still feel exhausted, but apparently, I have used up my ration of sleep 🙁

Fri 18-Jan-2019

Well, not only did I not sleep yesterday lunchtime, I had a lot of difficulty last night too, it was well after midnight before I got to sleep and even that was poor. I was up at 4:45am to tale offspring to the station and I reckon no more than 4hrs sleep total in 24hrs.

Surprisingly I was alert, well functional as in my brain was working, I still felt physically tired but have remained alert. I did manage a 1hr nap this lunchtime.

This fatigue and how it feels like needing sleep even if I’ve had sufficient sleep for my body is really tough.

First, I have to judge if I need actual sleep and make sure I get it (hence the afternoon naps), BUT, I also need to recognise when it is just the fatigue and push on through and I ALSO need to recognise when my brain is no longer functioning well and stop and rest even if I don’t need (and can’t) sleep.

Postscript

What can I say, it has been a tough year and the next will be much tougher, this staying alive lark is hard work, important, but I now realise just how much we (certainly I) take for granted the simple task of living – never mind all the extras we do on top of just staying alive.

No longer, …, my primary task each day is just getting my body through the day, everything else, even just being with Teresa, is icing on the cake!

The Bean, Pendeen, 20-Jan-2019

Confused Poo, back to work and assignment challenges 05-Jan-2019


The new bed, not as exciting as a pussy cat, but, …

Sat 05-Jan-2019

The decorations are off the tree, but since 12th night is not till midnight (please don’t correct me, all I know is that after midnight, Christmas is gone) Teresa has left the tree lights on till she goes to bed (before midnight), when she will turn them off for the last time, everywhere else is stripped bare. 

Spent all day sorting out migrating Outlook from Teresa’s old to new computer – eventually done but a nightmare and took out any chance of assignment 🙁  

Sun 06-Jan-2019 

Normal poo again, this is downright bizarre! 

Yesterday evening the lights were on, today I took the lights off the tree – why me, because that way they will not be tangled when they go up next year. Mrs “push and shove it” has a less managed approach to packing away the lights BUT she then asks me to untangle them next year. I put a stop to that last year and this year, no tangles, “so there” 🙂 

Then tree is out of its barrel, unclamped from its stand and free of its granite blocks (anti cat push over tree devices)  and out by the bin for the council to do it’s recycling thing

At the same time Ikea delivered my new “day bed” to replace the sofa I sleep on, we have accepted that’s how it’s going to be so I need something somewhat more comfortable (and longer). Tried it at Ikea in Exeter when we went there and it seems to be the best (and most robust) option. 

Delivery went like clockwork, though their Satnav took them to the North Inn as it always does 🙂 

Wiped me out and I’m now in take it easy mode. Finished my Christmas cake 

Had a Benecol (yoghurt drink thing with anti-cholesterol characteristics) with lunch, first time in ages, see if my friend diarrhoea returns 

Nap as usual, then more work on assignment, tea and more sorting out Teresa’s computer – this time Email addresses. 

All done, some more normal poo and then crashed out. 

Mon 07-Jan-2019 

Awake early, worrying about the assignment, I am going to have to request an extension, I don’t like it but I cannot complete it this week since I am back to work. It is also such intense work that I can only really do a few hours (three MAX) before it wipes me out 🙁  

So, here in my office, back at work at 6:05am! 

A good day’s work, managed my 7.5 hours and then some work done on the assignment. I did end up asking for a two-week extension to the assignment, hated doing so and need to make sure I deliver the goods, but 3 weeks is better than one week before submission! 

Poo, ah there’s a story, no action almost all day. Had Benecol drink at lunchtime, nothing, had Teresa’s turkey pie for tea, much the same as her turkey stew (form which the turkey came 🙂 ) plus mushrooms. 

Now, was it cumulative Benecol? Was it the mushrooms (something we have suspected for some time) or was it the broad beans that I had, “confident” that since things were so blocked up, a bit of veg could do no harm? 

I don’t know, all I know is that just before bed I “tried” and managed something close to normal, so far, same old same old as of late.  

Downstairs for 10 mins and nope, urgent messages and full-blown diarrhoea. Back downstairs, laid in bed and yup you get it, another missive, … 

Early hours of the morning another message and … 

Tue 08-Jan-2019 

Things are quiet now, some cramping but nothing happening because I suspect there’s nothing left? 

At work in Penryn 

Afternoon nap and then working on the assignment – hard work, but getting there. 

No poo whatsoever yet, is that because my system was scoured out yesterday or is it back to its default behaviour. I know I feel uncomfortable but is that just general abdominal discomfort courtesy of paz (muscle and joint pain) or is it digestive discomfort due to constipation as opposed to that from diarrhoea? Drives me nuts (and stresses me, trying to work out what is going on) 

If I stay “bunged” I will try adding veg to tomorrow’s tea and see what happens! 

Well just before bed, normal poo, but despite a lot of “gurgling”, no explosions, starting to really suspect those broad beans. But had no Benecol yesterday so must have that today but no veg. I could be anally (ha!) scientific about this, but despite all appearances to the contrary I’m not and try not to obsess on what I can and can’t eat and do the one change at a time, as much as anything as I suspect it’s a complicated (more than one factor) problem 

Wed 09-Jan-2019 

Slept ok, for me, but awake at 5:15am and her at work by 5:45am – saving that 1hr drive (each way) plus another 1/2hr of getting shaved, dressed, sorting lunch, …, easily gives me an extra 2.5hrs a day of work, with my fatigue that is a blessing! 

Ah, all change, no poo, no poo, normal poo, severe diarrhoea, well that’s my morning “sorted”, no idea what’s going on now! 

Thu 10-Jan-2019 

Not a lot to say, poo is normal which “should” be a good thing, but I worry. Despite having the same curry (frozen) that seemed to trigger diarrhoea when first made and having Benecol yog drink and yoghurt with tea, nowt going on in the poo department. 

If today stays benign may try some more broad beans this evening and see what happens, it is driving me nuts, are my problems food related or not, well, they seem to be, but there doesn’t seem to be a totally reliable pattern! I know it’s made worse because the anti-nausea drugs tend to cause constipation and fruit and veg are massive triggers, but … 

Fri 11-Jan-2019 

In office 6:45am, later on will move out our old sofa and build the new Ikea day bed and hope it works as well as I thought it was going to. 

Work is going well, assignment is OK, but I am shattered and know I need a break – I just don’t have time for one yet I must have one as my body cannot cope with this beyond today, so a quiet weekend, which ignores all the jobs Teresa has backed up for me 🙁 The idea that fatigue can be impacted by mental effort MORE than physical effort is not one I find it easy to get my head around! 

Well, I got the Ikea bed made (see the pic at the top of the blog) looks like a hospital bed but we already knew that, jury is still out on comfort, but that’s to be expected, it’s different. 

Managed to take out the old sofa – the old route in via sitting room door and over the fence was out of the question for Teresa and I, even with support from son who is visiting on Saturday for a few days. So, I made the decision to cut off the bottom 6” of the old sofa and that was enough to get it out of the sitting room and through the front door. In the end half an hours work but probably another half an hour of stripping off the covers, inspection and analysis of the problem – oh and having the right tools and applying some brute force rather that elegance but done 

I am totally wiped out, especially since I didn’t sleep well at lunchtime on the new bed. 

Poo, well, just before tea I threatened if things weren’t moving for the first time today then since we are having Teresa’s chicken pie for tea, I would add the portion of broad beans that got things moving the last time! 

It heard and absolutely normal poo, so no broad beans. However, the mushrooms (a known but less aggressive antagonist usually) did their stuff and full-blown diarrhoea a couple of times, but settled after that. 

Clearly there is an issue with what I eat and slowly we are teasing out the culprits and what exacerbates what, 

Postscript 

A relatively quiet week, but it’s clear that not much physical effort wipes me out, but also wipes out my brain too (and indeed vice versa), this fatigue is tough, the toughest part of the treatment (for me).

On the plus side I managed a full week of work at my (current, drug induced) best and it’s a couple of months since I was able to do that. Plus I made good progress on my assignment, not great, but enough to feel that given another two weeks, I can hand in something that might scrape a pass and that’s good enough for me 🙂

p.s. WordPress decided that this blog should be entered in it’s new style block editor, which I cursed last week (I think) but so far it is behaving itself, fingers crossed that any subsequent efforts are as painless!

The Bean, Pendeen13Jan-2019 

Poo has changed, year TWO has started – 29-Dec-2018

By now, the lights have been turned off and taken down, but these outside lights really did light up our arrivals home, even if I so rarely got out that I mainly saw them through the kitchen window!

For the observant, yes, that is Teresa’s Christmas present just to the left of the wood store in a side on view.

Christmas is a distant memory, however Cancer remains an ever-present fact of life 🙁  

Sat 29-Dec-2018   

A rough night, eventually slept solid from sometime between 2am and 3am and 6am. 

Up at 6am and in office at 7am 

No “movement” yet, … 

Bit of movement however very solid (on verge of constipatory), not what I’d expect after softener last night AND another this morning, oh well, better out than in. 

Had some (poo) curry and a yoghurt for lunch, that’ll get it going? 

Nope, nothing happened. 

Tea as usual and then Ok, normal poo, quite a few breaks of the all done message? Well, nope got a bit more”, “all done now”, maybe, …., nope a bit more”, however all basically normalish stuff – which for me is unusual. 

Then just as I got the all clear and sorting out loo roll, a mighty woosh and a full Barney – where the hell did that come from, well, yes, I know WHERE it came from, but not WHY, oh well,  

Sun 30-Dec-2018   

A better night, but still very groggy. Made some progress on working on the assignment, but it’s really tough. 

No poo today so far – prob cos it all left last night? 

Daughter has left after a week here, boy did that week pass so quickly, Christmas was coming and then it went zoom past. I guess it always does that, I’m probably just a tad more sensitive! 

Next milestone is my Birthday but we feel that Mid-January is not going to be a major hurdle for me to reach, at least I sure as hell hope not! 

My poor Lego is sitting there untouched, I don’t feel I can start on it if I have assignment to do, so I reckon I won’t get started till after the deadline (the day before my Birthday) 

Had an afternoon nap, woke at 3am and just made it to my office at 4:25pm – THAT is how hard it is to get moving and I reckon I will have an hour at the absolute max working on the assignment before my will to keep going crashes (it’s not exactly above walking pace as it is 🙂  ) 

Had the poo curry for tea last night, did it ease the constipation, did it, ****, though it did permit poo release there was nothing easy about it, I guess I shouldn’t complain, most people would call that normal, I wouldn’t it’s too close to what causes bleeding, I guess I am just ungrateful! 

Mon 31-Dec-2018   

I ranted about it last week and in today’s news “Councils ‘failing’ to prosecute blue badge abusers“. 

A typical night’s sleep, deep but waking every 1-2 hours, sometimes for minutes, sometimes for 1/2hr or more. 

Still here I am 7:45am on New Year’s Eve and about to start work on my assignment, I really need to make some headway on the extra references I found and get started on the main ones for the assignment. I desperately need a draft by the end of the week as that gives me 1 week to finish all the editing and we both know how slow my edit process is on a typical blog of 2-3000 words not a fully referenced 5000 words of academic writing! 

‘Don’t call me brave or heroic for being disabled’ ( https://www.bbc.co.uk/news/av/uk-england-stoke-staffordshire-46653842/don-t-call-me-brave-or-heroic-for-being-disabled) 

I am not a cancer warrior, Teresa and I aren’t in a battle against cancer, I am not brave or special. 

We are all just people but that also means we deserve the same respect, it shouldn’t matter if I am in a wheelchair, visibly pregnant, …, if I need a seat, I need a seat, it’s not being “kind” it is being a decent human being 

 

I went to bed at 8:30pm and sometime later fell asleep. Teresa was due to wake me at 11:45pm to ensure I was awake enough to do New Year with her, as it happens, I woke around 11:30pm. 

We did new Year – that means watching the countdown on Jules Holland (don’t ask why, it’s a Teresa thing), burn Last Year’s Mistletoe, kiss under these years (or is it the other way around) and that’s it.  

I know Teresa would like a much more social affair, I am afraid the autistic me drags her down in that, the cancerous me doubly so. 

Sorry pet, I hope we get to do this again next year xxx 

Tue 01-Jan-2019 

A year ago, today, we had known I had terminal cancer for over two months but there was little to show for it. All anyone could see (my Oncologist included) was the damage from the accident, the level of pain I was in and the limited use of my arm. 

A year on, I will always have restricted movement in my right shoulder, not the end of the world but a nuisance all the same. I am still in pain, it’s rarely severe now but it NEVER goes away and it does wear you down. 

In that same year, the cancer has remained as invisible as it always was, even before the accident. Without a CT scan you would never know how badly I was (and am) riddled with it. 

The treatment, well, a year ago, the side effects were barely touching me, I had only been taking the drugs for a couple of weeks. The side effects of the drug increase over time as they accumulate in the body. A year on and it is these side effects that you see and hear and read me suffering from. The abysmal fatigue that gets in the way of everything I try to do, even this blog, that leaves me permanently incapable of movement never mind action! 

As for the rest, well any regular reader knows all about the joy of poo, but there’s a lot more than are part of a treatment that doesn’t kill me, but runs as close to doing so as it can to slow down the cancer (no, it doesn’t kill the cancer, just gives it a hard time for a while) without actually killing me.  

TOXIC is the word I am looking for, it is a poison, designed to kill. 

So here I am entering the second year (TWO) of post diagnosis and treatment.  

The first half of last year was tough with the broken and damaged bones. The second half was tough from, the drugs. 

The best I can hope for is that this year is equally tough from the drugs and the fucking cancer stays in the wings ready to pounce but staying its hand, for now. 

Wed 02-Jan-2019 

The firm whose staff are all autistic – this is related to the assignment and ultimately the MA I am doing on autism, how do autistics work in a world where not only do their employers not understand, they themselves are un-diagnosed and don’t know or understand. 

Bloody awful day today, achieved nothing 

Oh, and full-blown constipation despite yoghurt two days running, what the F*** is my body doing??? 

About 7:45pm took a “softener” as getting worried, by 8:30pm, all passed through and all well, not diarrhoea, one could say normal. I just don’t understand what my body is doing 

Thu 03-Jan-2019 

Almost normal poo this morning too, there is summat afoot – going to try Benecol at Lunchtime and see what that does! 

Oops, was leaning against door to my old office (in sitting room) and a sudden bang and it popped open (door lock needs some work as is sticky and was obviously not fully “latched” 

Bang, I was flat on my back, my left-hand side hit hard, then my head hit something hard, then the rest of my hit stuff. I shouted out to Teresa, who was playing with Barney in the sitting room, that I was Ok (she was laughing!!!) and then laid there for a few minutes while I worked out what hurt and if anything felt broken. 

Well I got up and everything felt ok, sore in lots of places, my left shoulder took more of a bang than my right but it hurts, my left elbow took a bang. 

I said to Teresa that since I bruise so easily after blood letting then I may bruise up badly only to see my forearm, a mixture of graze and bruise that came up in minutes. 

Since I clouted my head and I seem to bleed easily and stop slowly I asked Teresa to keep a close eye on me in cause my brain decides to go awol! 

On my phone is a list of drugs I take because there is no guarantee that casualty would look up ALL of my records to find out that the drugs I take fuck up healing BIG TIME (like with my broken bones after the accident). 

So, I’m monitoring, but getting on, all my fault and I think I came off lightly but I suspect both shoulders and my coccyx (which took quite a bang) will express their feelings over the next few days, weeks or indeed months 🙁 . 

Working hard on my assignment so there may be less in these blogs for a few weeks, or if the assignment is driving me nots, more, … 

Hmmm, that poo just seems to be persistently normal/constipatory! I forgot the Benecol, but diarreah seems to be a distant memory. That said I still have a very uncomfortable abdomen so things are a long way from being “right” 

Fri 04-Jan-2019 

Up early, well laid in less, so awake around 5:50am, up at 6:15am and in here at 6:50am. Whilst I remain just as tired, I am no more so than if I had approached things more slowly and had another “sleep” (sleep being something I get in 1-2hr increments) 

More work on my assignment today, though since Teresa’s new computer arrived yesterday, I am going to have to continue swapping her over to it at odd times during the day. 

Missing a whole load of books on autism that I want to refer to for the assignment. Turned every bookcase in the house upside down, no dice. In my old office I built a place for my clothes strong enough to stack a load of Teresa’s books safely, it was for Teresa’s books, nothing of mine would be up there. 

Looked at my Amazon orders, worked out it was end of 2017 when some of the books were bought. Worked out which of the three places I have had my office was current at the time and deduced that I “could” have put some of the books up with Teresa’s. One step ladder (and worried Teresa, especially after my fall yesterday) and YES, I may not have found every one, but most have turned up, I am so relieved, albeit absolutely physically exhausted. So, now I need to just sit and rest for a while, by which time it will be lunch time and then nap time and then this morning has disappeared! 

Starting to move Teresa from her old computer to her shiny new one. As always, the process is fraught, currently the problem being persuading outlook to export from the old computer and then import her Email to the new computer. What should be a trivial task takes a long time and then fails. Such are the trials and tribulations. 

My recording equipment arrived today (or at least most of it) and I took advantage this evening of the chance to set up the recorder. Again, made much harder by computers (in this case my computer refusing to recognise my USB to SD card adapter despite having done so for the last year and having been rebooted – go figure. 

So, from 7:30pm I was dashing up and downstairs (to Teresa’s new computer that had no problem), knowing that I was far too tired and in a manic phase, I said so on one of my many trips past Teresa. 

However, I did what I needed to do to feel satisfied and then crashed out. Took about an hour of TV whilst lying in bed and then whammo – out like a light. 

I KNOW I can push myself (I have to at folk festivals where I get little in the way of rest and the evenings often finish close to midnight), but I also know that is what I am doing and there is a price to pay. 

I have no regrets for last night, but I won’t be doing it tonight! 🙂  

Postscript 

Poo has changed, from diarrhoea to normal/constipation, that “seems” to coincide with my finding more energy, are the two related? Which do I prefer? It might seem obvious, but diarrhoea is easy to deal with, constipation is not.

On Facebook, on New Year’s Day, I posted my New Year’s message TWO meaning this is the second New Year’s Day since diagnosis and I am now starting Year TWO of living with cancer and its treatment.  

Beans New Years Message

For some this WILL be their last year, for many they will not really notice the passage of the year. If I get to shout three then I WILL notice the passing of the year and that is the biggest change in how I live, each hour, day, week, month and year matter

Tomorrow will stop coming some time, so stop worrying too much about it and focus on today.

The Bean, Pendeen, 06Jan-2019 

 

 

Fatigue and the build-up to Christmas - 22-Dec-2018

The Saturn V, almost as good as a pussy cat! 

[EDITORS NOTE] FFS stop faffing with things, WordPress editor was fine for adding links, this recent version fights me every inch of the way in its new fangled editor and won’t let me go back to the one that works. FFS.

If FFS is not clear, try For F***CKS Sake. Change for changes sake is not always better.

What’s wrong with Valves instead of these new fangled transistors I ask? For those of you too young to understand “transistor”, they replaced valves before blossoming into the “chips” all you young folk like. Me, I love computers, but nowt beats a good Valve, especially in Audio, so there!

Any funnies in the editing cannot be my fault at the moment, it’s the stupid technology’s fault, honest it is!

Sat 22-Dec-2018   

We had a delivery of logs due this morning (for the newly re-roofed wood store). We realised we could (and should) have paid for it later and gone out early, instead we didn’t get out till 10am. BAD move on one of the busiest days before Christmas!. 

First to Thornes at Long Rock for Veg (I also spotted some mistletoe for our New Year celebration, more on that next week), then The Range for Kitsch (and cat litter), then Sainsburys! 

What can I say, no disabled parking free at Sainsburys, REALLY, all those disabled people desperate to go shopping in more volume than any other time of the year? We had to unload the buggy (so I could handle the store) in a normal parking slot , not trivial in a stupid manic car park with no disabled slots to help, so unloading into the moving traffic! I was amazed how many people scuttling about at speed seemed to be using a disabled badge – they couldn’t ALL be invisibly disabled could they?  

We got home 1:30pm ish, grabbed some lunch, I was exhausted, could not settle till gone 2.30pm, what sleep I did get was poor. 

When we got home, in the post was my scan report from the Cancer nurse (that wasn’t available at clinic last Wednesday), basically it is OK, and though I do need to clarify some stuff, from my reading, I got: 

  • The shoulder met seems smaller – since this was the largest and it keeps getting smaller, good news. 
  • Some nodes are unchanged, ok 
  • Some nodes are larger, however a note from cancer nurse says these are fluid filled (and hence being damaged by the drugs) so should shrink back at the next scan – “no need to worry” 
  • Right upper lung “stuff” is reduced – good news, if they could be clear about what exactly it was/is! 
  • No new lung stuff (as opposed to what the consultant thought), so maybe lower lungs are ok? 
  • No other nasties lurking (or at least seen 🙂 ) 
  • Because Haemoglobin is high, again, I go to have a pint of blood drained to dilute things at the end of January! 

Curry this evening, straight through diarreah hit, and after 3 bouts I took “blocker” drugs (Loperamide), as usual I was wiped out, diarreah does that! 

Sun 23-Dec-2018   

Got in some logs, went back to Sainsburys for stuff Teresa was missing after yesterday. Tesco opened at 10am so I went there first but no glycerine (the most important missing item) so got that at Sainsburys. Again, parking was crazy even before 11am (when it opened), all disabled slots bar two were full and even as I pulled into one,I saw someone pull into the other (next to me) with no blue badge at all and run into the store, hard not to wonder if some of those cars were able-bodied people with the disabled person still at home in bed! People wouldn’t abuse the system for their own convenience, would they? 

Had my nap upstairs so Teresa could make a noise in the kitchen/wrap presents, up at 4pm, daughter arrives and lot of nattering, more curry, another load of diarreah, … 

Mon 24-Dec-2018   

Up at the crack (5:45am) and at the butchers at 7am to collect the turkey and stuff. Back by 7:30am, even in the pea soup fog. 

Started making sausage rolls, a Christmas tradition dating back into my childhood – some nine rolls of ready rolled puff pastry and 8 ‘tubes’ of sausage meat making some 146 sausage rolls. It was a marathon of a job and totally knocked me out, I didn’t finish and have lunch till gone 1.30pm – much too late for me. Nap upstairs again and crashed. 

These upstairs naps will become relevant later in the week as I can only lay on my left shoulder in the bed (without the back of the sofa for support). 

After coming downstairs, it took over an hour to come around and by 5pm (ish) I was finishing some wrapping – mine was done beforehand but Teresa hadn’t had time to wrap daughters stocking plus there were a few outliers. 

Got that done and tea closer to 7:40pm (than my preferred 6:30pm), again much too late and yup poo, but this time only the once, although that was “enthusiastic and prolific” 

Tue 25-Dec-2018   

Up at 7am, readybrek for breakfast and drugs at 7:30am so no sausage rolls till 10:30 am. 

I am totally mucking up today as my life is so driven by drugs, fatigue and the need for rest. So, at this time when they are all still in bed, this is what I expect to happen: 

  1. I was up at early (for me) and had my usual breakfast, cup of tea and the first drugs (blood pressure and nausea). Now a 2hr wait for second batch (cancer) 
  2. Prepare the sprouts (traditional – even last year with broken bones and SLOWLY!). As always, a debate – cross the tops or not, no choice, cross! 
  3. Around 9am (ish) Teresa and daughter will appear and we will open stockings 
  4. 10.30ish (for me, maybe 10am for Teresa) it’s sausage rolls and sloe gin fizz for everyone (just a splash for me) 
  5. 12 to 12.30 I head up for my nap (hopefully the last upstairs so they can sort things without disturbing me), Teresa finishes her cooking prep 
  6. 3pm or so I reappear (rested we hope) and 4pm for Christmas dinner and following that main presents. 
  7. Phew 

I hate mucking up the normal timing (being autistic such things matter a lot to me even if others may be more chilled) and not being able to help Teresa much. That is why I over did myself on the shopping on Saturday, going in Sunday morning, doing the meat run early yesterday and then sausage rolls, …, just to contribute a bit. 

There have been all sorts of other minor jobs like fridge stuffing, bird stuffing, … 

Well, that’s pretty much how it was except the dinner was about an hour late – not bad and Teresa was totally relaxed, so a good day 

The first two sausage rolls were nice, the second two were cardboard (same ones from same oven). We were told by the dietician that with taste it’s possible for the taste buds to get saturated and stop working and then recover. Do my “sausage roll” taste buds only last 10 minutes before burn out, will find out tomorrow if a) they have recovered and b) if I can enjoy all 4 rolls for lunch? 

I had my afternoon nap and Christmas dinner went really well, I didn’t eat a lot, but enjoyed what I did. Teresa surpassed herself (as usual) in the catering department. She has really got the laid-back Xmas dinner cooking down to a T 

After I woke up, I stayed out of things – least stress for me but managed a poo call just as they were bringing food to the table – thanks body! 

It wasn’t the planned 4pm, more like sometime after 5pm I think, but who cares, … 

After that presents, I barely made it through that I was so exhausted, why on earth is opening presents so tiring, all I did was sit there! 

Oh well, I already had requested my “main” present (a Lego Saturn V rocket, …, if you don’t understand, I can’t explain, I remember Apollo, I was 14 at the time, a formative period in my life), but there were lots of other bits arrived including a couple of “poo” cushions. 

I tried to post on Facebook about the poo cushions about how chuffed I was with both but I seem to have failed to communicate that and am left feeling that I completely blew it and caused offence/confusion. 

I HATE the social world, I am here at 1:25am on boxing day because I am so upset, I cannot sleep. 

Why is it so impossible for me to really understand how the social world works and how to say things, especially the online one when I cannot judge as I go along and easily ask questions. I know I often fake it OK, but this evening proved I really have no idea what I am doing, it leaves me just wanting to turn a switch and disconnect form the world. 

Over reaction, well try walking in my shoes for the last 60 odd years, failing to understand how the world around you works AND the world around you not understanding how you work, BUT, it’s only you that realises it or does anything about it. 

Awful as the cancer is, for me, it is not as devastating a part of my life as being autistic in a neurotypical world.  

Oh well, shit (sorry) happens and hopefully if I get tired enough, I will crash before morning and eventually (days, weeks, …) the memory goes into the background to come back and make me cringe as memories still do of all my faux pas from the earliest parts of my childhood to today, arriving unbidden and unwanted at the oddest of times. 

Well, since I’m here I’ll try and release last week’s blog that got caught up in the busyness and exhaustion of leading up to Xmas (see earlier) 

Blog released, goodness knows in what state. It was “almost” ready but I’m not really in a sensible frame of mind to have any sensible judgement as to how well edited it was, oh well it’s gone and I need to find something else to distract me until I totally crash out 🙁  

Such a shame that a brilliant day as Christmas day was marred, at least it was after Teresa and daughter gone to bed, so they are unaffected, marred by my stupidity so that all I have left of the day in my memory feels awful. 

Wed 26-Dec-2018   

I did eventually crash and in the cold light of day I have checked what I wrote las night and not changed it, it reflects how I did feel and still do 🙁 . Teresa tells me (nicely) I am reading things all the wrong way, but that’s really the point, I don’t know how to read them any differently. 

Anyway, whilst not getting anything really done (that assignment is still waiting) boxing day has passed quietly 

Sausage rolls for lunch, I can taste the meat (just, even though it’s packed with flavour according to others) but the pastry, it tastes awful, cardboard with fat – yuck, these screwed up taste buds are manageable but also horrible when they take away from you some of your favourite flavours. Still I am getting back some taste for fish, so maybe sausage roils will recover? 

Started building Teresa’s (cold) seed frame (Christmas present) 

Tea is looming (reheated xmas dinner so xmas dinner for a second day – I love it), uWave is perfect for me. Teresa and daughter are fussier and like things heated in the oven, …, me I don’t care. My plate looks a lot fuller than yesterday, so I may need to pare down what I eat, but, … 

Yup, half the tea disappeared into a Tupperware and will reappear tomorrow! 

Thu 27-Dec-2018   

Finished building Teresa’s (cold) seed frame (Christmas present) and it is now outside. 

Another barely getting anything done today, tea tonight was mainly what I hadn’t had yesterday which was mostly veg (sprouts) and potatoe (which I know is harmless to my digestive track). I had been worried about the sprouts for Xmas day but was fine, clearly today, I had passed some threshold because, …, oh boy, two bad sessions in the space of 15 mins and a third about half an hour later. Two loads of Loperamide to try and slow it down, which the second did. I feel really rough 

Fri 28-Dec-2018   

Well, a rubbish night, I was mega tired but from about 1:30am, sleep was poor. I am having difficulty with both my shoulders which forces me to sleep on my back which is never good, it was still 7:30am before I got out of bed but all I want to do is get back in again 🙁  

The right shoulder (the one that was damaged in the accident) is always problematical, but the strain of sleeping on the left, especially on the bed seems to have caused difficulty (pain) from shoulder blade all the way down to the below the elbow. So, I have to try and sleep on my back, about the worst position for me. 

I have managed to get started on my assignment, only a couple of hours, but I’ve managed, all I now need to do is sustain it.  

Tried cutting up my sausage rolls, as we had to do last year for me to eat left handed and adding a dash of Lea & Perrins and that worked wonders.

Another useless nap time, barely slept but we then went to visit friends this afternoon and had a wonderful time, lots of discussion on the joys of kidney cancer, both husbands have it, and though our experiences are very different, as are our treatments, the lived experience of couples dealing with it are not really any different. It was so nice to spend time with people who just “get it”. The best bit of Christmas for me, thank you both (I know one of you will read this and I hope pass it on) 

Postscript 

Two thoughts, the first is that nobody knows how anyone else is coping or what they are going through. Most people don’t say as much as I do, and even with my poo obsession, I don’t bother you with all of the other crap, shoulder pain, back pain, neck pain, headaches, nausea (unless it’s noticeably bad), stomach and leg cramps, hip pain, ankle pain, … I think it’s a shame we aren’t more open because it can help someone not feel they are alone in what they are going through. 

We (Teresa and I) have learnt that we are the best doctors for my health and it is our responsibility to treat me, manage symptoms, the disease and the treatment. Yes, of course, the NHS contributes to that and yes, they have the heroic drugs, machinery and experts, but yet, they are the supporting cast, it is Teresa and I, and in the end, ME, that needs to manage my health, to make sure that the professionals do what I need them to do, whether they want to or not. At times that means shouting loudly and making a damned nuisance of yourself, at others a quiet voice demonstrating that I don’t expect them to “fix me, but could they do this for me please (nine times out of ten, they just do it without a problem).  

We have rarely had to shout, sometimes had to be firm, but ALWAYS we had to be the ones in charge and there to be no doubt about that in our minds or the professionals. 

It’s tough when you are ill (terminally or not) and just want “someone” else to look after you, but our lives are our own and it’s down to us to manage them. It’s a tough lesson to learn and a tough thing to do, but it is, we believe, the only way to get the best out of the very limited resources available to us via the NHS. 

The second thought is that it is hard to describe how much the fatigue gets in the way, I can get ONE thing done a day and I don’t get many hours for that. That one thing INCLUDES rest (outside of naps), so a chill out day does not include doing anything – even building my Lego Saturn V Rocket (Christmas present) which I very much want to do. Right now, I have an assignment, my Christmas rocket, some music to record AND some chill time to fit into the next 10 days, it is overwhelming! 

The hospital may be pleased with how well I tolerate the max dose of Paz (800mg) after a year on it, and it is having a good effect, but god it is tougher than you can imagine. Worst you can’t see, on the outside it is invisible 🙁  

As for “is this my last Christmas” you may consider me a bit of a depressive when the signs are better than last year, but I know the cancer is not giving up, it has many avenues of attack and nobody can know whether I will survive another 5 weeks, 5 months or indeed 5 years. I do know it will not get easier and quite likely harder and I won’t really know until I get close to the end and that scares me, I can’t be chilled about dying, I can be realistic and do all I can to put it off, but I can’t say “yeah, I’ll ignore it till it happens”, it’s just not me. 

Maybe this helps?  

If I (others will be different) decide that all is OK and I will be fine for next Christmas, then I stop keeping an eye on what is happening to my body, I abdicate responsibility for manging the disease and catching things before they become a problem. I end up failing to take care of myself. By remembering the stakes involved it helps me stay motivated in managing my condition as well as I can to give me the best chance of being here for next Christmas. It also helps me in not putting things off, so that Terresa and I can enjoy them today, because there might not be a tomorrow to enjoy them! 

And with that thought, a happy New Year to one and all and may all your poo be firm but not solid, that joyous middle ground between constipation and diarreah that you never appreciate, until that is, it is no longer part of your life 🙂  

The Bean, Pendeen31Dec-2018 

 

 

Strictly is over, was that my last. Scan results vague – 15-Dec-2018

Sorry I failed to get this out on Sunday, as you will see next week, the run up to Xmas got stupid exhausting for me! 

Sat 15-Dec-2018   

I am now on holiday (from work) until after the New Year, however I have the first assignment for the autism course to get done. I have had a month’s “break” but that leaves only a few weeks to get it done and I am struggling to get my head into gear. So, I may not be working this week but I will be studying very hard and given that involves reading/writing, that will be more intense than my day job, language NOT being my thing as anyone reading this will know, more to the point academic reading/writing is MUCH harder because vagueness is not acceptable 🙁 . 

Not sure how rested I am going to be! 

Just a bit on Autism, Do autistic people ‘get’ jokes? It gets better over time and we do have a different sense of humour so it can seem like we don’t rather than your joke isn’t funny for us and vice versa 🙂 

Had yoghurt and benecol yesterday and the poo is in full flow this morning. 

Well, it’s taken a few days, but this evening Barney climbs onto the short (1m high) bookcase next to the tree and hurls himself up to the top of the tree (ceiling height), clearly felt unsafe and leapt back to the bookcase, to the floor and wandered off in to the kitchen pretending nothing had happened! 

Teresa was really proud of him, me, hmmm, … 

Still the tree survived with no “damage”, those granite blocks did a good job! 

Evening and constipation returns, will test again tomorrow but yoghurt seems to be a clear antagonist. 

We watched Strictly (come dancing) this evening, not unhappy with the result, clearly the final is a popularity contents (public vote only) but at least the dance-off in previous weeks ensures that the best dancers make it to the final so it doesn’t really matter, it is after all TV not a real contest 🙂  

Still it’s sad for me, this time a year ago I didn’t think I’d make another Strictly. This year, now it’s over, a year is a long time and I cannot be sure I will see next years, I’ve written before about “anniversaries”, well after the day of the accident that started my “journey” (that hated Strictly word) watching Strictly is the first of those and ahead of me are all those possible “last time” events, it’s hard keeping your head in today and just enjoying tomorrow if it arrives, because part of the enjoyment is anticipation and that I dare not allow myself 🙁 

Four days to results 

Sun 16-Dec-2018   

Constipation is still here. 

Got last week’s blog out this morning, good I am managing to maintain my weekly releases, whether they are comprehensible is another matter. No matter how sure you are that you understand, remember I can substitute words without realising and that can give the totally wrong message – that includes switching positive and negative statements! Always keep that salt cellar handy in case you need a pinch 🙂  

Although I had a yoghurt with lunch, poo is still difficult at the moment, more lumps of granite than smooth “plops”, so maybe we also need the Benecol. Tomorrow will try the “normal” regime and see if that kicks things off. 

It’s awful trying to manage something where there is an unreliable delay between what you try and what happens, sometimes of days not hours. A lot of the problem is dietary in terms of “aggravating” factors. The drugs however provide the baseline diarreah/constipation factors and are themselves in a constant battle between each other for control of my digestive track. They seem to use my diet as pawns in their battle and nobody seems to care about the poor digestive track itself or me in who it resides! 

I did manage to get all my presents for Teresa wrapped, that includes my contributions to her Christmas stocking (we do stockings in the morning and presents after Lunch). Fortunately, my daughter has taken on the role of Teresa’s stocking or there would be no surprises for her at all. Thank you daughter 🙂 

Three days to results 

Mon 17-Dec-2018   

Well, nothing happing on the P department this morning, so tried a softener to see how that works, it usually only takes a few hours if things are “marginal”, so fingers crossed and legs uncrossed 🙂 

Nothing happened, had a Benecol yoghurt drink at lunch and mid-afternoon there was a solid splash so something happened but I would call that barely released constipation. 

All quiet, had poo pie (Lasagne) without the Lentils, Teresa having decided I didn’t want them as we suspected them of causing diarreah, I never said that I just said I would take some Loperamide for “protection before eating it. I also had a yoghurt with tea. 

Oh boy, did the flood gates open around bedtime, three, increasingly sever Barneys (like weeing from the bottom!) and took an Imodium Instant to slow things down. So, clearly “something in that mix (plus the apple and pear juice I had just before tea) triggered things. 

Tomorrow I will have Poo Pie but no Benecol, yoghurt or juice and see what happens. 

That diarreah REALLY knocked the stuffing out of me, I had felt quite good (for me) all day till them and afterwards I felt awful, mega tired and feeling generally poorly. 

Oh well, tomorrow is another day. 

Two days to results 

Tue 18-Dec-2018   

Well, I have got out my “Jazzy Xmas” sax tunes book (and play along CD) and will see if I can remember how to play the Sax (an Alto so nice and light) and generate some Xmas spirit, might need it after tomorrow 🙁  

I cannot settle to doing anything, even urgent things (like my assignment) all I want is to “know”, good or bad, just know. Teresa had trouble sleeping last night, feeling short of breath, she felt the same three months ago. Indeed, three months ago she was sick on the way to get the results – I had to stop the car so she could be sick. 

You cannot know the stress this three-month cycle brings with it, knowing that every cycle, the chances of bad news increases. We’ve been doing it for a year now, that scan last week was my fifth, it’s 14 months since the first with the bad news lying on a bed in casualty. It’s called scanxiety but that sounds like being anxious before a visit to the dentist. 

I remember that moment when the Mercedes Sprinter hit me and the worry about what was going to happen because I knew it would be bad (I was lucky it wasn’t that bad in the scheme of things), that was child’s play to wondering what the scan will reveal, even worse because it’s not for a few seconds and then, yes, I am alive. It’s stretched out over weeks, then days, then hours, then minutes, then seconds as you wait to be told. Waiting while they ask “how are you”, “stressed out of my bloody skull waiting for you to tell me something” is the answer, but no, you tell them how you are coping with the drugs, any new symptoms seen, you are a good little patient, all the while screaming at them to tell you, just tell me. 

Teresa goes through the same, it’s no surprise we don’t sleep well, have difficulty focussing, throw up, it’s a surprise we function at all. 

We may not be conscious that’s what happening to us, I’m NOT living every minute of the day worrying, indeed virtually all the time I am barely aware of what tomorrow is but “my body knows” and it is reacting whether I chose to or not. That’s also how PTSD works, it’s the body reacting not our consciousness, you don’t have a choice.  

There is a fascinating book on PTSD called “The Body Remembers” that describes this phenomenon! PTSD is not just caused by violent acts, the impact of being diagnosed with a terminal illness (personally or for a loved one) has just as much potential for trauma, and PTSD is not something you as the sufferer are necessarily aware of, it is often only seen by others when it is triggered.  

Don’t think that just because someone “seems” to be handling it well (as people do about me), don’t even be fooled when they themselves think they are coping fine.  

The body knows. 

To change the subject, well a bit, another Bean hobby horse – Male breast cancer, in this case both partners had it, she died, this stuff is crap and the only people who really know how feels is those going through it, the “experts” have to run a sausage machine even if some (many?) would rather give individual care, they don’t have the time or resources, so the rest of us need to be there to help, inform, support. If you think his reaction was extreme, I don’t, nobody can know how desperate we are unless they are there too. 

Male breast cancer: ‘I tried to cut off my breast‘: Cancer is normal, we need to talk, surely this bloke could have had a lot more support from those who have been through it themselves and not left to feel isolated because he was the “wrong” gender. Cancer, in whatever form, is not “easier” for anyone, gender, age, …, it doesn’t care who or what you are. 

 

Almost tea time, I sure this non-lentil Poo Pie (Lasagne) works as I feel very bloated and constipated and really very uncomfortable, bordering on pain. 

On the other hand, I’ve had a bit of a tootle on a jazzy xmas tune that I used to be able to play (to its backing track), I’m not there yet, god I have lost so much in mouth control, tongue, timing, …, but hoping it will start to come back. 

I have lost so much in the last year, but started to claw some of life back – folk festivals, DIY, even academic study, be nice of the music comes back, even a bit! 

One day to results. 

Wed 19-Dec-2018   

Scan results day, …. 

Well, we went to Treliske and were there in plenty of time, it was to be a repeat of our last trip 3 months ago: 

The scan had not been reported, again, that means the Oncology consultant looked at it, but any actual results await the Radiologists comments. In the Oncologists opinion: 

  • the lymph node tumours are no change or shrunk, that’s positive 
  • some have fluid centres which means tumour is not happy with the drugs and “dying”, this is good. 
  • the top of the right-hand lung issue is still “we don’t know”, but “seems” to be no worse, so neutral news. 
  • however, there is some more of the same “we don’t know” stuff at the bottom of both lungs, this does seem to be new. They are happy to just “watch and wait” (a standard cancer treatment when they don’t know what’s happening!). This is NOT OK, but it is also don’t panic, …,  yet! 

Basically, it is probably “status quo” for now, with the lungs being an increasing concern, however we are waiting for the official scan results in a week or so. Next time they will book the scan earlier to see if they get the results on time for clinic? 

Oh, and finally 

 The haemoglobin level has gone back up, again, so they are scheduling a visit with the vampire to have a pint of blood removed so the haemoglobin is diluted – if it remains high it screws up the liver ☹. This may become a regular process, oh well. 

I came away with my usual shopping bag full of drugs, feeling relieved it isn’t “bad” but not happy not knowing about the lungs for sure. 

There’s a lot of I in there, but of course Teresa was alongside me the whole time, going through her own version of relief, …,  

Poo, well, you can’t not mention it, we are back to constipation so it’s yoghurt with “poo pie” (without lentils) tonight and if that kicks off then we know, yoghurt is definitely one of the antagonists. 

We quite liked the look of Shrewsbury folk festival next summer however they have a policy that “carers” only get the concession price not free as many festivals do. However, the concession price is just £5 less than the full price, hardly a concession! So, it won’t be Shrewsbury then! As I said to an organiser: 

Getting to the festival is expensive, my carer gets limited access to the festival as she is constantly making sure I have what I need, never mind having to do all the work of sorting out our camping, eating, …, she feels “valued” when she doesn’t have to purchase a full price ticket as well. Yes, I get enhanced PIP but it barely covers daily needs not such “luxuries” as festivals 🙂 

Well, I ate today pretty much the same as yesterday except I had a yoghurt with my tea. From constipation to “easy-peasy” in a couple of hours, it’s starting to look like Yoghurt is there. 

Thu 20-Dec-2018   

Going to have yoghurt with lunch today and see if it kicks in this afternoon. 

Did some minimal DIY – putting up a couple of boards at the back of the woodshed ready for our log delivery in the morning. Moved two bags of old books into my old office for over Christmas until Teresa sorts them/sells them. Fetched 3 bags of logs in, totally wiped out. Had a good 1.5hrs of quiet time but still feel very washed out. 

I should be getting on with the Autism assignment but I just don’t have the cognitive “oomph” to get on, worrying as only a few weeks to go. Tomorrow the works Christmas do, just handling a room full of people having “fun” (not my idea of fun), will wipe me out, thank you autism, missing my afternoon nap, double whammy, that’s Friday wiped out 

Saturday, we have a load of wood delivered and need to move it to the woodstore – this is killer even with two of us. Then we need to go and do our major Christmas food shop which just on its own would wipe me out so that’s Saturday gone and Sunday will follow on its heels as I “slowly” recover. Then we have Xmas eve and there you go,  … 

Well, I had the yoghurt at 1pm but despite some stomach cramps, no activity so far (4:45pm), so just to prove me a liar then, …, I hate my body 🙂  

Fri 21-Dec-2018   

It was our works Christmas dinner today, so I went to the office at my usual time, do some work. Once of the team came down with me to the hotel to ride shotgun (aka be my carer) in Teresa’s absence (she was otherwise engaged or would have come). 

The trial run we had done the week before worked. The hotel had still got the parking space wrong but we just parked in my preferred spot anyway. 

The door up to the room was unlocked so no problem getting to the room around 11:15. We were told, “sorry, not ready yet, you’ll need to go down to the bar” which is at the opposite end of the hotel a very long walk. I replied “no I don’t”, so they sent me to sit in a lovely alcove where the rooms’ bar is and overlooking the FAL estuary, I was happy. 

The meal was OK, I had to be very careful to avoid any Veg so it was meat and potato with a bit of Xmas pud to follow.  

The entertainment looked good, there were three magicians and clearly an act for after the meal, but in the meantime, they went around the tables doing various tricks and even at close range, they were very well done. 

I left once the meal was done, around 2pm, I was already very tired and I didn’t want to risk being too tired for the 1hr drive home. 

All in all, it went very well, it’s NOT the sort of environment that I would ever choose, as an autistic it was seven sorts of hell, but the company have been so brilliant in supporting us (Teresa and myself) that the least I could do was to join in with them at the Bash. My presence seemed to be appreciated by people who rarely see me as I am only in the office for a few hours once a week. It is a fantastic company to work for, I can’t say anymore, … 

Got home and tried to go to sleep around 3:30pm but failed so had a sausage sandwich for tea, lots of diarreah all afternoon/evening, eventually stopping when I crashed out around 8pm. 

It was a tough night and I was awake 1am to 4am and ended up making a chicken curry (for us and my daughter) as a “cut and come again” sort of meal (just add rice, pasta, baked potatoe as required) and I was dragged out of bed around 8am – any more follows next week, but since it’s Xmas week I may forget minor details like lack of sleep 🙂 

Postscript 

Clinic and getting scan results (or not!) is never easy, diagnosis and treatment is an incredibly imprecise science, orders of magnitude better than it used to be, treatments too, but still it’s never clear what is going on, the experts in the dark too. It’s no good complaining they “should” know, they are not gods, they do what they can. That doesn’t mean Teresa and I don’t keep a close eye on them to make sure they aren’t missing any tricks, but we both know that there is only so much anyone can know or do, in the end the experts here are the cancer and the human body under attack, we are often merely spectators to the unfolding battle that takes place inside our bodies. 

I hope you all have a good Christmas and New Year, I will still try to publish the next blog on time between Christmas and New Year, but your Christmas dinner is saved from poo tales, unless you are late reading this, then “on your own head be it”, you know that the poo will always be here for you, as it is for me 🙂  

The Bean, Pendeen, 1:30am, 26Dec-2018 

 

 

Blood pressure, poo, yoghurt and ignorance – 08-Dec-2018

How it begins: 

 

Jane on my lap, Burli (facing the camera) jealous, joins her… 

Fri 07-Dec-2018   

I ran out of time to do last week’s Friday entry (the first day of our weekend in Exeter, so here it is now: 

We left 9am but I still managed to put on one black and one blue shoe (same style just different colour kept in the same dark corner of our front porch). Also forgot to pack my razer, who knows what else? 

Just after Bodmin there was a massive tailback. A car had crashed into a ditch on Temple (where else!) we eventually reached a diversion set up by the police onto a minor road past Colliford Lake and onto the A38. They didn’t stop the traffic coming from the other direction so all the drivers were taking a risk “dashing” across, it was dangerous and I’m surprised there wasn’t another accident, rolling roadblock anyone? The queue was all the way back to Bodmin for much of the day. 
 
It added about 1.5hrs to the journey. We were busting for the loo and stopped at Tamar bridge services then the ultimate insult, we had to pay to leave Cornwall because we were not on the A30. 

We were planning to go to Ikea at Exeter on our way to the Hotel in Exmouth, we were somewhat late but we had a good time whizzing around (me in the buggy). I even found a day bed for the living room to replace the sofa I have been sleeping on. Hopefully we will get that ordered soon.

Left Ikea at 4.45om with busy roads to Exmouth and satnav was confused about our destination based on postcode only, but cos I had street viewed I recognised the start of road.  

Yes, the hotel (Royal Beacon) has a car park with a reserved space (if you pay, we did), but it is very small and tight with a very tight entrance, we got in, just, Angelique is NOT a city car!.

By the time we arrived it was too dark to see the sea even though our room had a sea view.  

No time to sleep, so we had a quick meal, which was OK, but nothing to write home about, sums up the hotel, “perfectly pleasant” but wouldn’t go again. 

We had booked a taxi to the pavilion, a few minutes’ walk but too much for me, the receptionist wasn’t convinced we needed one, I assured him I wouldn’t make it without one and I wouldn’t have, it was the right decision. 

The concert (Show of Hands) was brilliant but the end time we had been given was wrong and as we had booked the return taxi, we missed the last number and encore 🙁 

Mega tired, crashed but still frequent waking. 

No poo all day or sign of any so I took a softener

Sat 08-Dec-2018   

Still no poo.

Breakfast at 7am to give Teresa time to enjoy it before driving to Exeter to make sure we could park OK. Tight nickers and leggings hurts my tummy so much yesterday, so, I need a plan B and wore lighter nickers and lighter leggings today and the pain was easier. 

There was a tad of poo during breakfast (but in a loo 🙂 ), but I had had muesli and orange juice as well, I suspect I may have cork out of bottle syndrome later. 

The journey and parking were OK. I found my chosen car park. There were no disabled bays but I had seen from Google Maps that there were areas of yellow hatching we could park next to, to give room for the ramps, we got there early enough and parked next to one and the buggy was easy to unload. Blue badge park for free, please note Cornwall!!! 
 
A steepish climb into town but only 5 mins so battery whinged but recovered. 
 
Teresa is happily shopping. I needed loo so loo and tea in Waterstones. Not a great design of loo with the sink so close that I cannot sit straight. 
 
And yes, from solid sausages to explosive in less that 2 hours. I don’t understand. 
 
Now sitting in Waterstones while Teresa book shops  
 
Onto John Lewis. Teresa did a lot but bought nothing “I don’t know how to shop anymore” she wails, sorry pet. 
 
Me two pairs woolly tights to try instead of leggings plus some more Chanel Chance Eau de Toilette, I find it nicer than the perfume version and also the original is better than new “flavours” of “Chance” available. 
 
Now in M&S coffee shop. Just like the one in Plymouth, I suspect same architect? Teresa queuing me found table and waiting for sausage bun and hot choc. 
 
Getting out may need a lot of reversing, this place is so badly designed for disability, even pushchairs (of which there are many) just block the aisles.
 
God, even for the loo, wheelchair access is rubbish. Mobility scooter much worse. I guess I am expected to walk with a scooter and not wheelchair. Maybe need to change in the future? 
 
Teresa is getting stressed because I struggle. “Trust me, I will say if not manage or need something” I say, but she struggles to believe me. Sometimes she worries too much and that worries me and it’s a vicious spiral! 
 
After we left Marks, the heavens opened. The buggy cover/cape is badly designed with water coming through arm holes as they open upwards not downwards and even with Velcro, leak! Will try sealing then with gaffer tape. We walked through a soggy Xmas market, shame not stop and shop, but too wet. And we are on our way to the car. Car park full of people trying to find places and blocking your exit in desperation, we decided to come back to hotel. Me have a nap and Tereasa walk into Exmouth. 

On arrival back at the hotel, tryign to get into the the car park, our space (actually labelled as such) is occupied. There is also a Merc, not in ANY space,  also blocking manoeuvring space. The hotel moved our reserved to a better slot for exit but will be difficult for Merc to get out and others in. Oh well hope for no damage. 

Teresa left me deal with minor poo and then nap time. 

Eat in hotel is easiest not great food but is OK. 

Sun 09-Dec-2018   

This was the reason we actually went up to Exeter – for a carols workshop for Teresa, lunch and then a carol concert in the afternoon, all at Halsway Manor. 

However, before we left, we had to get out of the car park at the hotel and it was a nightmare, the turn onto the road outside is very narrow and with cars parked opposite there is only just enough for a car when parallel to them so doing a left turn in the bus was impossible because of the adjacent wall, I just managed a right turn (around a car parked against the opposite wall) and away we went. 

Arrived at Halsway with no probs but instead of the workshop being in a different room and me able to hang around in the bar, they moved the workshop to the bar and left me sitting in the drafty hall. To be fair they fetched a comfy chair and sat me in front of the blazing fire, so I was fine, but I did feel a bit shunted” 

Teresa seemed to enjoy the workshop. 

Then it was lunch which for a mass-produced meal was quite pleasant however I felt awful and almost skipped it completely, instead a diarrhea trip, drugs and pain killers seemed to settle me enough to eat a little. 

We then went into the bar to wait for the concert. While there I nipped to the loo (as I do) and whilst Teresa was sat down, some people came in and sat at the table where we were (all this I found out later) and commented: 

“Have you seen that man in a dress” 

“He’s only doing it for attention” 

Terresa was livid and said: 

“That is my husband you are talking about and he doesn’t do it for the attention” 

I came back from the loo as she was walking away but although she said she wanted to talk to me I never heard her say that. 

I went and sat down unaware and she came back and was clearly unhappy so we got up and she explained, I wanted to have words with them, but she asked me not to so I went and collected my bits and we made our way to the concert. 

She had good cause to be angry 

  • First, how ignorant 
  • Second, how stupid to say it in front of her!

We think they were “locals” come in for the lunch and concert but that doesn’t justify such bigotry. It’s rare we have to deal with such attitudes and when we do it is really quite unpleasant. 

I call it ignorance , it may have been nasty, but I find some people just say what they hear down the pub or read in the tabloid newspapers and regurgitate it without thought. 

I doubt we will be back to Halsway Christmas again and I certainly won’t ever. No, it’s not their fault but I just wouldn’t want to put myself in a place where such attitudes are considered acceptable by the people attending. 

Then we drove home, stopped at Cornwall services where I had a double Makihata to wake me up and home no problem. 

Except I felt a bit odd after we got back, checked my blood pressure and it was 156/101 (not 120/80), not mega dangerous, but not at all healthy. 

A lot of rest got it down to more like 135/90 by the morning and even more rest and by the Tuesday we were down to normal, phew. 

Was that the result of the activity last week and the weekend, was it the coffee, was it the pain killers I have been taking for my shoulder. Will need to do some experiments but not until after the scan results next week! 

Mon 10-Dec-2018   

CT scan, they wanted my right arm to do things that my locked shoulder will not do! Otherwise all went well, the hospitals car park was full so we had to park across the road and a quick yomp up the road to the hospital, I say quick but by the time I reached the hospital I was at snail’s pace. Arrived just in time for appointment and straight in. 

Only compilation was when they asked if I was a “bleeder” before removing the cannula. I said, not usually, but apparently, this time I was, the pic below shows the mess made (under the skin) as it slowly stopped bleeding. 

There is much more bruising now (Friday) 

We then picked up a Christmas Tree (a week late for us, we try for the 1st December) and put it in the house and that was me wrecked for the rest of the day and we left it lying on the floor in our front porch. 

Tue 11-Dec-2018   

We stood Christmas tree in its pot and clamped its base, filled it’s stand with water and loaded it down with granite blocks. Hopefully the cats will not climb it (yes, I don’t believe that either) but if they do it can contain their weight. 

In the afternoon I put on the lights and tomorrow Teresa will do the decoration (she enjoys doing it so I do nothing) 

Wed 12-Dec-2018   

Try to do a poo, no poo, but got blood, I thought we had got past that, bloody bottom 🙁 .

Dash off to get blood tests done (for next week) and took a “softener” to see if that gets things moving without needing ANY push at all. 

Back by 8:30, quick cup of tea, put up our outside lights (a quick job, but probably all I will get done today) and a “soft” poo trip with minimal; blood. Fingers crossed, of course it is likely that my body will tip into diarreah, but hey ho, … 

A week today and we will know so long as the CT scan has been reported, scarily close 🙁 

Thu 13-Dec-2018   

Softener before bed last night, no dice, one when I get home from the office, ignition!!! 

I was in the office today for a few hours which included going down to the Greenbank Hotel in Falmouth to work out access to their function room. If you are in a wheelchair, forget it, too many steps. However, they have reserved me a space in their underground car park and there is a staircase direct to the function room just outside the car park, so, as I can handle stairs when I feel good, that will do. Roof height is close for Angelique but I was told by the folks with me that I had enough despite me feeling I was about to hit something at any time! 

Teresa and I have been wondering if either the Benecol “drink” I have at lunch or the yoghurt I have in the evening may be contributing to the diarreah problem so I stopped at the beginning of the week, it’s starting to look like it behaves the same as fruit and vegetables as an “antagonist”, after another week or so, will try introducing one of them to see if it changes things! In the meantimne there is a lot of constipation which is worrying and I may “relent” and try the yoghurt in a few days, not a week!

Fri 14-Dec-2018   

Well the constipation continues and it’s a struggle to get it moving, so I’ve gone back on the Benecol and Yoghurt and will then try reducing them. Right now, constipation is a problem because of the internal pressure and the risk of triggering bleeding. Diarreah is also a pain, it’s a hell of a problem finding a balance. Well I did say yesterday “few days” 🙂 

The Ondansetron, that controls my nausea so well, we know causes constipation but the cancer drug (Paz) causes diarreah. They always used to be in balance and then shifted to the diarreah end, maybe a bit of reduction in the yoghurty quotient will restore a semblance of “normal” who knows? 

Spent some time today helping Teresa sort the sitting room (throwing away a load of Beans stuff). Then some time doing the same in Beans office using the same technique. 

Virtually all of my DVD’s and books are gone, CD’s will not be far behind, it’s tough but I’m never going to get to see/read them, so it’s better to go now than for Teresa to have to sort it later. 

Also, I have spent much of my life sitting surrounded by “stuff”, cramped by the volume of it, all useful at some point. One of the “up” sides of knowing you have a limited time left is realising that you never will use it now and it isn’t going with you so throw, throw, throw. It’s sad so much of my life is going, but then that’s the reality of my situation and I have to say that the space I am creating is quite liberating so I am choosing to see the process as a positive one, tough as it is to do. 

How it ended 

Burli “deployed bottom” and pushed Jane out of the way. Jane retaliated by sitting on top of Burli! 

Postscript 

Only 3 days (it’s Sunday) to the scan results, do those marks on the last scan (3 months ago) mean cancer has progressed to my lungs or not. What other good/bad news is there? 

One can always hope it will all be good, and I do, but I have to prepare myself for the worst, it’s so hard. I know I have a sword of Damocles above my head suspended by just a few threads and I cannot see how many are left holding it up. I know one way, successful for some, is to pretend the sword isn’t there and just keep going and “if it falls, it falls”.

Me, I’m of the view that if I start to hear the last thread creaking I want to see if I can’t dash out of it’s way(change treatment), make my peace with death, say goodbye, …, I’d like choices, not to be taken without ever knowing.

No way is right for everyone, but mine is for me, …

Wednesday morning we should know, if those results are in

Tick, tock, tick tock, …, was that twang I heard another thread breaking or just the wind?

The Bean, Pendeen, 16Dec-2018 

 

 

DIY Week, and a bit of poo – 01-Dec-2018

It is one of those axioms that if Burly lies down he looks cute.

Sorry for the delay, Sunday we arrived back from Exeter late and yesterday was scan day and I felt particularly poorly before and after.

Sat 01-Dec-2018

Time to try and recover a little of the lost building work from over a year ago. After the accident at the end of last October I was about to modify this room into my Daughter’s bedroom – she had moved back home. 

Wham, the accident put paid to that but the room was full of the building materials already bought, including an 8’x4’ sheet of marine plywood for a new roof for the wood store. 

Folks from the office moved my desk+ to the house so I could work from home, but all the building material was just pushed to the side. It was very cramped and only got more so as I needed more gear to do my job. 

So, I have the stamina of a jelly, but I can get some of the physical work done, I’ve taken a week off work and need to slowly pace myself through the next week to get enough done to make it a more livable space. 

It will not be great, but it should feel less like a dump.  

Still there is progress and this computer is now reconnected, a lot more work to do but I need to pace myself and today is a quiet day before starting again tomorrow. 

I can manage the physical effort, albeit in small doses but it renders my brain incapable of thinking, I end up on automatic pilot and incapable of intelligent thought. 

Oh well, at least I didn’t mention the P word? 

Teresa bought be some Xmas bedding today, I like it

Sun 02-Dec-2018

Continuing on the room 

Mon 03-Dec-2018   

I was hoping as part of the process I could get at some trunking behind the skirting board in the room to find the lighting cables that are short circuiting the lights in here, our downstairs loo and front porch. 

No good, they are hidden in the roof space which is inaccessible without ripping down the ceiling 🙁 . So I’m going to do need to do some more fancy detective work to see if the short is in accessible wiring and if not where it is before ripping down a load of ceilings. 

No, I can’t get to them through the upstairs floorboards. Above me is our bathroom and Teresa has just had a new floor laid, suggesting that is taken up will go down like a lead balloon (quite rightly so too) 

Mixer up, Amplifier up, speakers and sub are wired in, PC sounds never sounded like this 🙂 . 

Next get my Raspberry PI + HiFi Berry up and connected to the network so I can play from our NAS drive with better quality than my PC can deliver. 

Still, I got all the work audio and target PC to wire up, good to get sounds back! 

3pm, no afternoon nap and feeling proper tired! 

Someone coming down here to see the Contra and hopefully buy it. Not cheap for him but a mega loss for me, but I rarely play it and Teresa doesn’t need the problem of disposing of it after I have died. So, if it comes off, the money will provide some “fun” for us in the present and that’s the way it goes. 

Part of the process of sorting this room and indeed the sitting room is disposing of things like books, CD’s DVD’, stuff that I will not have the time to do anything with between now and my personal D-Day (the opposite of B-Day 🙂 ), this cutting away is difficult but necessary, it reduces the problem facing Teresa and it helps me accept what is coming my way. Not the I will ever accept it as “acceptable”, but it is “inventible” and that I do know. 

3:25pm, the raspberry PI is up and hooked into the desk and we have sound and access to all of my MP3 archive, yeah!!! 

He likes the contra and has agreed to buy it. Selling it was a healthy loss but it means Teresa doesn’t need to dispose of it (have I said all of this already?). Anyway, job done and money in bank 

Tue 04-Dec-2018   

Very exhausted but one job that was already long overdue before the accident last year was to replace the roof on our second wood store. 

DONE, well done Teresa, well done Bean, that’s me shot for the day. 

Relieved I can do some DIY but disappointed how little stamina I have, some of that must be lack of fitness, but some of it is just that old friend of fatigue. 

Poo, it has been scarily normal today, why scary, well, in my paranoid world, does that mean the drugs have stopped working? It’s awful when diarreah “runs but at the same time it says the drug is doing “something” not necessarily holding the cancer at bay, but my body hasn’t totally defeated it. I worry about that because once my body in general and the caner in particular work out how to ignore the drug, the cancer progresses and we have that step down. Given the worry about my lungs and well, … 

Never mind, we had sausage meal tonight – in full form it’s roast pots, a sausage (thick and meaty from local butcher), large field mushroom, onion and peas. 

I’m not a fan of onion in the meal so skip that, peas well, my body hates anything green, but I did have the mushroom despite knowing they can trigger my digestive system, but things have been good so fingers crossed. 

1.5 hours later and you can guess, the flood gates open. Two hours after that and what was left (I can’t believe there was anything) made it’s exit. I took a risk and didn’t take drugs; the morning will reveal … 

Wed 05-Dec-2018   

Well, “close” to normal, close enough for my decision to avoid drugs last night to be vindicated, worrying as it was being in bed without a safety (poo) net 🙂 

Today I was to go to the opticians with Teresa as we always do that together (to discuss frames as much as anything), Teresa had even confirmed they would put out a ramp for me to get into Specsavers (good for them), but it’s torrential rain and forecasted all morning and we are having a weekends break up Exeter way this weekend and getting soaked on the buggy as preparation doesn’t seem like a good idea. 

Ain’t be sure how the weekend will go as we return on Sunday and the scan is on Monday, hopefully the peak of scanxiety will hold off till after the scan? 

So, this morning it’s wiring up my test computer so that next week I can get back to work, not sure why sorting out work equipment is done on my time (I am on holiday) but the company have bent over backwards for their support of me so it seems the least I can do, it is only a few hours after all. 

1.5hrs later and it’s wired up and has audio running through it too. RESULT, I am back to what I had but with a lot more space to work with and with better speaker position (in front is SO much better than behind, ears don’t work the same backwards 🙂  

Knackered and yet all I did was run a few cables and walk around the house finding some bits. The backlog from the (minimal) work I have done over the last 4 days has taken its toll and I need to be sensible for a while and leave the mess that’s behind me till another day (which means tomorrow), oh well, even if I get no more done, there is so much more potential in here to get it really sorted that the effort has been worthwhile AND delivered a sense of achievement that has been lacking over the last year. 

Remember bean it is an HDMI to VGA adapter not a VGA to HDMI – that’s why your HDMI monitor wouldn’t work on the dual screen VGA adapter! Changed monitor, downloaded driver and test machine now has twin monitors – albeit monitors that are some of the earliest clunky LCD ones, but for the test system perfectly useable – waste not want not! 

Thu 06-Dec-2018   

Don’t suppose anyone will thank me, but as I seem to be a poo person 🙂 , I saw this on the BBHC web site, “Why do people experience phantom rectum?”  which is about Stoma’s (poo bags on the tummy), I can imagine the thoughts, “oh Bean, do you really need to?”. The answer is yes, I do, before Bean dies, he’s going to have his readers (few though they may be) so chilled about Cancer and Body functions they are blaze?  Well, I can hope 🙂  

I wanted “blaze” to sound like the word that means “chilled” but no idea how to spell it or prompt my spell checker or google to help, I suspect an e acute might help but no idea how to get one of them in here either!!! 

My own poo report, well from good yesterday morning, to not so yesterday (but not explosive) early evening and double not so (explosive) at midnight! But, “almost” not diarreah this morning so can’t complain 

Another step forward in sorting this room out, I can see light at the end of the tunnel. 

The rest of the day is somewhat of a blur I am totally exhausted with less cognitive skills than Burlington (and it is a well-known fact he only has one brain cell and he inherited that from Gus!) 

Off to Exeter tomorrow, full of trepidation, it is supposed to be a nice weekend away, but me, being me, it’s a fine line, I know we need to, it’s nice for Teresa, it will be OK for me and may even have some high points (like Show of Hands on Friday night), but worries about hotel rooms, disabled access, parking, poo, being away from home can get in the way. 

It’s the same with folk festivals, it’s not that I don’t want to, but like an agoraphobic, I just don’t want to leave my safe space (home) because it is a scary world out there. 

Oh well, we will see and I will report back here about how Friday went on Monday morning (AFTER the CT scan) before releasing this week’s blog. 

Fri 07-Dec-2018   

We went up to Exmouth today at the start of our weekend away in Devon, there is a full write up of this, but if I try and add it here, it will be a few days before this blog escapes, so I will pre-prend it to next (this) weeks’s, I hope that is ok (tough if it isn’t 🙂 )

Postscript 

Scan on Monday, blood test Wednesday, results in 10 days, clearly it is going to be a chilled and relaxed time till then??? 

The Bean, Pendeen, 11Dec-2018 

 

 

Poo, of course and Scanxiety is building 24-Nov-2018

Burlington is the only cat that reliably sits on my lap 🙂 

Sat 24-Nov-2018   

An awful night, I didn’t start sleeping till well gone 1am and it was rubbish sleep after that. Woke around 8am but it took me a good hour to get to the point of being able to manage breakfast and almost humanity. Apart from anything else that means I can’t eat again till just before lunch and miss out my mid mornings, that plus it’s a non-Ondansetron day means that nausea will be worse anyway. Oh well, it was never not going to be a crap weekend waiting for that scan date. 

I have completed the last double blog and so this should go out on 2-Dec-2018, did I think I’d make it here a year ago? I had my doubts, do I think I will make it another year, well, that depends on this bloody scan that isn’t happening, but I have my doubts and that is hard to bear. 

Still, poo is under control, well, for the moment (and it is moment), I would never be so rash as to say it is under control for as long as minutes 🙂 . 

I say “under control”, that’s never that close to the truth, we had the chicken and leak minus the potato plus puff pastry as a pie yesterday and today. Today I took a precautionary Loperamide, it leaves me feeling uncomfortable but I get to actually digest my food and don’t lose so much fluid! You can hear the gurgling from my digestive system across the room! 

As Teresa says “your gut must be a mess”, on its good days yes, on the bad it’s a right PAIN! 

Sun 25-Nov-2018   

Another rubbish night, dreams of not being able to do things I really wanted to do, unfortunately with Teresa as part of the equation. 

A difficult subject to even raise, but there’s no denying that it is a problem for us at the moment. 

The last of the double blogs is released, phew that makes me all caught up. Not waiting for Teresa to edit saves a lot of time at the price of less readability, oh well, in this brave new world where I assert my right to be me more strongly, maybe that’s no bad thing? Again, that difficult subject, …, I fear there will be a lot of difficulty in the blog this week 🙁  

On the good side I have made good progress yesterday and this morning on my job work, albeit at the price of achieving anything else this weekend, like fun 🙁 , still I lost so much time again last week, that I had to try and make it up, I just cannot keep taking time off sick. 

I often comment on poo incidents that result in needing a clean pair of knickers, the result of things not staying where they are wanted till you make it to the loo. One of the reasons I write about it because it DOES happen and not just to me, as a society we are far too squeamish. 

Saw this on the BBC News web site: The friends who giggled their way to an incontinence business. Loved the article and their intent, it’s a problem that does particularly affect women, most often after childbirth – a really brutal process for the body based on my observations of four births, especially two first-borns. 

We have got to stop being so namby-pamby about ordinary body stuff, whether it’s pee or poo, dying or whatever, it’s part of our shared experience, so bloody well share it rather than allow it to sit in the shadows causing such worry and embarrassment for some. 

Well, thanks to one friend we had a brilliant exchange about poo on the Facebook posting of yesterday’s double blog. But a shame it was just us two 🙁  

Mon 26-Nov-2018   

I am not a great one for “stats”, I consider a good day for my blog is that someone looked at it, there are many days when no one does 🙂 . Yesterday seemed to go mad (for me) and some thirty odd people looked, that’s a “record”. 

The title of the blog was, for me, purely descriptive, it never occurred to me that it could be or was anything else. I gather that putting in the phrase “dying is looming” may have encouraged some to wonder what that meant. I am sorry if you thought it meant I was on the verge. I may well be, we will know better after the CT scan (whenever that takes place). 

However, the blog was not misleading, it was written in a week when dying was (still is today) very close to my thinking, in particular how to and what I would do to let it takes it course sooner rather than later. 

There are those who have cancer that would view my pessimism as being weak, that I’m not “fighting” this cancer. You should all know my view on the word “fighting”, cancer isn’t an adversary you can beat, it’s only one you can try to survive. 

In these blogs I try to be true to what is happening and dying IS dominant in my thoughts, not only that I will, but the question as to whether my quality of life is improved by trying to put off that day using drugs and other treatments. 

Am I there, I don’t know, but I feel closer to that point than I have since diagnosis. Does that make me weak, I don’t think so, facing death is a damn sight harder to do than hiding from it and hoping it will go away. 

I know that any decision I make now, or down the line, affects Teresa and my children and I have to try and take them into account, but in the end, I am the one that has to live (up to) my death and I have to make the decisions that are right for me. 

The drugs we take (either in chemotherapy for treatable cancers) or in “slowing down” for the incurable ones like mine are awful, the point comes for anyone where the treatment is worse than the disease and dying. Am I there yet, NO, not in terms of treatment, I can cope with that, but am I in terms of the life I want to live in the time I have left, maybe, …, being miserable is no way to live, or die. 

You can always if, like my daughter, you want to understand more about what I am trying to write about just ask me, she did and we had a long chat. She doesn’t feel any better (as far as I know) but she understands better where I am and what I am thinking. 

I don’t have a problem talking about this and I know my writing is not particularly eloquent, indeed it can be mystifying at times as I have such a poor grasp of how to make language communicate what I want to say and not mislead or confuse people. 

If in doubt, ask, privately is fine, I am not hard to find even if I am rarely out and about 🙂  

 

And so, to work, I worked really hard over the weekend to make progress on my software rewrite that I have been fighting for the last few months. I now have it to the point where it works enough for me to see what the problems I have to fix are – I know that means nothing, but being frustrated you are making no progress is tough enough when all else is going well in your life, mine isn’t! 

Tue 27-Nov-2018   

At work in Penryn, made great progress, really pleased with work, I now have audio again after months of struggle. 

Nothing in the poo department till mid-afternoon when all seemed well, almost normal, then come the evening, sore “tummy” (not sure it is the tummy but easier to say than digestive system) and then two loads of diarreah and then Loperamide to stop it. 

Wed 28-Nov-2018   

No poo, no surprise, BUT massive “tummy” pain with nothing happening, I will have to mention this to the oncologists when we go there in case this is a new phase in the cancer or just one more of those fun side effects. But it is mega worrying on top of the lung question! 

 

Then the usual couple of explosions during the afternoon 

Teresa made a mincemeat (good quality from our local butcher), leak and potato dish. I was worried about the leaks and she was cautious, there was a lot of meat in there. Nothing happened post eating, so maybe, … 

Thu 29-Nov-2018   

STOP THE PRESS 

A normal poo! Solid, brown (not the horrible yellow I get with diarreah), I cannot remember the last time. I know it’s a rarity, but to feel “normal” just for a moment (in the poo department) is more important than you’d think! 

We wonder if, in part, this is down to the dominance of red meat in my tea last night, it does (I gather) have a tendency in that (constipatory) direction. 

Hmmm, already I have to cut out virtually all fruit and veg, I am NOT going to become a red meat eater! I am fine with white meat and that was sort of Ok though I miss “roughage” my body didn’t need any more “stimulus” than it already had. 

Oh well, no kicking gift horses in mouths, a good poo is a good poo no matter the cause or cost! 

God, how sad is that, eulogising over poo, I know you think I am obsessed, but it does rather dominate my life 🙂 

However, what do I see on the BBC news web site: 

How long does it take to poo Lego out if a child eats it? Clearly, I’m not the only one who studies it, though in my case I think the “transit” times is more likely to be around 30 minutes most of the time! 

Fri 30-Nov-2018   

It is time, I need to sort out my temporary office. A year ago, this room was full of building material and I suddenly (thanks Sprinter man) needed a place to work from home. So, a couple of guys from work (the IT Manager and the HR Manager!) came over here from Penryn with a van and, basically, the contents of my desk from work, computer, desk, chair, the lot! They moved the building materials around so there was (just) room for me to fit in here and I was able to work from home and have been doing so in this cramped space ever since. I have added a lot more equipment and it has got more and more compact and bijou (well, to be fair, a cramped tip). 

I need to sort a lot of stuff out in the sitting room and shed space (see next week) and so I need to reorganise this space. 

I am going to take next week off work as, even pacing the physical effort, the fatigue from physical work shuts my brain down and I can’t think, so, it’s going to be an exhausting week but, hopefully, a lot more organised in here and in the sitting room. 

Poo, continues good, the red meat diet is certainly effective, though it’s not one I am going to continue with, but the brief respite from poo wars is welcome. 

Postscript 

We did eventually get a scan date and got blood tests booked a good week in advance of clinic, so now it’s countdown to scan (I always feel rough for a few days after) and then clinic, hopefully with scan results and THEN we know what we know. 

Scanxiety is always tough, when you know they suspect growth and have just waited for three months to see if it does, the anxiety assumes a whole ‘nother dimension! 

p.p.s 

This post didn’t make it yesterday, but since the computer was shutdown during rebuild of my office (more on that next week), I reckon Monday morning is not bad? 

The Bean, Pendeen, 02Dec-2018 

 

 

Poo, of course, but dying is looming large – 10, 17-Nov-2018

There some nice things that happen and a Burli on your lap is one.

Burlington has this knack of laying down to sleep and instantly looking cute. I have never seen him not look cute when asleep (and he does that a lot). The other cats can look cute when asleep, Burli does it always.

Sat 10-Nov-2018   

Recovering from last week (in London), achieving nothing really 

Sun 11-Nov-2018   

Recovering from last week, achieving nothing really 

Mon 12-Nov-2018   

Recovering from last week, achieving nothing really. 

Yes, that’s 4 days of recovery for 3 days away, that’s a high price to pay! 

Been “constipated most of the weekend so I tried an experiment based on what happened last week on the course when I deliberately ate a few grapes (and slices of cucumber). 

At 5pm I had a handful of grapes, by 5:20pm (ish), a full clean-out, constipation no more. I think this is a pretty clear cause and effect. Works a hell of a lot better than Senna (laxative) type drugs, albeit rather rapidly, however it does confirm that eating fruit is a “challenge” and that has health impacts. 

Why do I have to experiment on my own body? Answer, because nobody else will 🙂  

Tue 13-Nov-2018   

At work today 

No poo, worrying about constipation and then this evening, 24hrs after the grape test, normally “movement”, first time for a long time that poo has held together! Too much detail says Teresa, wonderful result I say! 

Wed 14-Nov-2018   

Rachael Bland: Husband of BBC presenter reveals son’s words after her death, an interesting article on the BBC news web site, not for the title, though it does reflect just how much is left behind after the person with cancer dies, it also reflects a concern of mine that “peacefully slipped away with family at bedside” is not always an accurate summary of how crap dying actually is, both for the individual and for those around them. 

Teresa is not super woman and it may well become necessary to bundle me into a nursing home. I suspect she will hate doing it, but I will insist because it can be REALLY tough handling those last days and I’d rather she visited me than slaved over me. 

I will keep posting these sorts of articles, not for any other reason other than I think it’s important to understand, that discussion of the last days and more to the point the after days matters because: 

  1. We just don’t talk enough and openly enough about all the aspects of cancer, e.g. “died peacefully” may not be how it turns out and often isn’t. 
  2. Those that are left behind have to live their rest of their lives with that cancer, it is part of them, the person that has died, whatever you believe, is past cancer, their loved ones never will be because it happened and it touched their lives. 

Thu 15-Nov-2018   

DSA (Disabled Student Allowance) assessment, seemed to go well, need to see if the DSA approve the assessor’s conclusion. Main thing is that DSA does not support increased costs incurred by needing a carer (Teresa) to accompany you on training. Particularly if at a distance and complicated (like London or Sheffield), but … 

Started to feel “poorly” by the time we got back from Penryn (assessment at Falmouth University a short distance from where I work!) and I really didn’t feel up to much when I got home – nap time! 

Late in the afternoon I tried to do an Email to my Autism course supervisor, Teresa found it confusing (which it was) so I need to find a way to rewrite it.  

Crashed out 

Fri 16-Nov-2018   

I REALLY feel washed out and I’m not going to get any work done today, however, I had a course deadline so I dragged myself into my office and I re-worked the Email, Teresa approved and I sent it to supervisor, she approved my title. 

Teresa was in town for a Litfest thing at 5pm today and wanted Fish and Chips from Frasers, her favourite shop for the aforesaid comestible, partly I think because they usually have Hake, her favourite fish from such places. She tried last week but storms closed the prom! 

My haddock was “pleasant” not good as it would usually be but neither was it cardboard as it has been for the last six months. My taste buds are better than they were at their worst but nowhere close to being OK. The chips WERE like cardboard!!! 

Postscript 

Whilst death itself may be “peaceful”, dying sure as hell is NOT, I don’t feel at all peaceful, maybe I should, well that’s a point of view, but not for me! 

WEEK 2 

Sat 17-Nov-2018   

Still feeling washed out, however I got in wood (for the wood burner, prob 4 days worth and then struggled to do anything further, so, I listened to some of the lectures, which had been recorded. This time the the lecturer did the recording for everyone, but I am also allowed to do.

Slept and struggled to wake up, just wanted to lay back down 

Sun 18-Nov-2018   

Awake 6am, up 6:30am, in office 7:30am 

Released first double blog to try and catch up on outstanding entries (this one you are reading, should be the last one, so that’s 6 blogs in 1 week, I suspect reader overload 🙂 . 

11am, wiped out just getting that done and that was two blogs that had already been heavily edited, one by Teresa 

This assignment worries me plus job work, I can’t seem to get my head out of bed and energy levels are somewhere below zero 

Teresa made a chicken leak and potatoe dish, had it before, excellent, however having had diarrhea during the day, I could feel my buttocks clench at the impact of the meal so I took a precautionary Loperamide. Well it worked but … 

Mon 19-Nov-2018   

The next day my body is still in poo denial but my “tummy” (actually “gut”) is starting to feel sore, which is a sure sign that it wants to but not quite got itself together, I hate this stage which is often the result of a precautionary Loperamide 🙁 . 

Had a good night’s sleep till 3am and a rubbish one from then, I feel totally wiped out, wish I knew why. 

So, another wiped out day, despite having to book two days sick after being in London the week before, I am going to have to do the same for Friday and Monday this week and hope that if I am sensible that I can get myself together enough to go into work on Tuesday and TRY to get some paid for work done before I lose my job! 

Interesting article: Hospital noise levels growing worse, say researchers I find that not only is this the case (having laid in casualty for hours whilst having the most awful news given to me), as an autistic noise sensitivity, nobody even considered the extra stress imposed on autistics by the noise, lights, … 

Tue 20-Nov-2018   

Went into the office, albeit almost didn’t as I felt so washed out, I left earlier than usual and came home and crashed out, I have no real memory of the rest of the day, whatever is going on has really washed me out. 

Wed 21-Nov-2018   

Sort of back to normal but facing a crisis in the area of the MA, they want a title (done) and a bullet list for my assignment. What the f***k is a bullet list? I know technically what one is, I use them all the time, but for a Level 7 academic essay, what is one, what does it look like? The resulting panic caused a lot of friction between Teresa and I (plus a bucket load of tears for both of us) to the extent that I decided that this was no longer “fun” and drafted an Email to leave the course, explaining why. As usual, I ran it past Teresa and she asked me to tone it down just enough to give them a chance to “help”. 

Well they did, not so much as help but gave me more leeway by saying that the two weeks I had spent trying to get my head around the bullet list had produced one that was “fine” (how did that happen) and I didn’t have to produce a 1000-word draft (the next deadline a fortnight Friday). 

As anyone who reads these blogs regularly will know, after a load of edits I repeat myself, waffle, change the subject halfway through what I was writing (multiple times) and generally confuse my reader. 

Producing a “Masters” level essay from that starting point is NOT easy, so we will see. 

Poo, well I may not have mentioned it but it is continuing a nightmare, it flies from constipation to wild diarrhea with no rhyme or reason, hurts (more aches, from Teresa’s description it is probably most like period pains, but never having had them I can’t say, but my description she says, matches her experience of them). In any case, it’s awful and more to the point exhausting. 

As for sleep! All I do is wake every hour or so from yet another unpleasant dream, trapped, failed, my past constantly coming up, …, talking about your life flashing before you, well it is but in slow motion like the constant drip of water torture and that is exhausting too. This staring your own mortality in the face lark is no fun 🙁  

I did get out another double blog out tonight so I am now only a week (excluding this week) behind and another double release at the weekend will bring me up to date. As Teresa tells me, the blogs are fine albeit a bit wayward. One thing is that I often put XXX in them to denote that I can’t remember something, I gather some of them make it out into the wild, sorry about that, welcome to my brain 🙂  

Thu 22-Nov-2018   

At work, sort of motivated and sort of making progress, but don’t know for how long. I talked to Teresa this morning and said, “life is just no fun at the moment” and it’s true, staying on top of work is tough, the MA is tough because it’s causing more friction than fun between Teresa and I and I do not like that. Otherwise it’s fatigue, poo, poo, fatigue. If I haven’t got long to live, surely it could be more fun for both of us than this 🙁 Oh well, I will fight through to the other side of this dip or it will kill me, oh yes, it already is killing me 🙂  

Q. why don’t you go out in the evening Bean?

A. because I get incredibly tired in the evenings I would have to try and sleep all day and that just doesn’t work so I would lose much of the next day. I do it very occasionally but the price is incredibly high.

A. why don’t you go out during the day

A. much the same reason, even a few hours out takes so much out of me that I am useless for the rest of the day which is a problem when you are supposed to be earning your livingas well!

Q. so, what about the weekend

A. we do, but even a morning somewhere, even somewhere as exciting as Penzance will take out my whole day.  

Q. surely the loss of a whole day at the weekend is worth it

A. it would be if that was all I had to do, but there’s work on the house that I want to do myself, there is the MA that I want to do, there’s a bit of cooking I’d like to do (mornings only) oh and catching up hours on my job that I couldn’t manage during the week. 

Q. so,surely,give up the day job

A. brilliant idea, mortgage and bills don’t get paid, welcome bankruptcy :-(. Yes, it really is that black and white, our financial situation was predicated on my working till I was 70 – looked easy at the time (still is if I die quickly as the insurance pays for stuff, it’s my living that is the problem, so, maybe, …?). 

Conclusion: it’s not easy, fatigue is a killer to fun, poo is exhausting and a double killer to going out, just pushing past the worry about the cancer is tiring. 

So, we do try our best and find pleasure in small things, but sometimes it’s just too much. At least Teresa gets out and about even though she often needs encouragement to leave me home alone as she is doing today. After her work today, she is off to the Supermarket, one of the “fun” things we sometimes do at the weekend, but it does take out all day Saturday or Sunday and that’s high price to pay for the excitement of a trip to the local supermarket! 

Next week (I think) Teresa has an optician’s appointment and since that was something we always did together we will do that. It has to be a weekday, in the morning when I’m most alert, so that’s a day at the office wiped out. Even so, I will need to use the buggy to have any chance of doing anything after my afternoon nap and so we have the challenge of access to Optician which has a step to get in, … 

I know we can park on Market Jew Street (or somewhere similar) for free with my blue badge, but I don’t like to selfishly use that space when I can manage to park in a main car park and use the buggy. Stupid maybe, but I’m not giving in that easily to disability! 

Massive tummy pain, off to the loo with fingers crossed 

 

Fifteen minutes later, “almost normal”, followed by “explosive”, followed by “full barney (very fluidic!)”. Yes, it takes that long, it’s why I do academic reading in there, passes the time! I have to take time as “problems” seem to go in waves and if you leave early you can be sent back in such a rush that it’s changing your knickers time! 

As I have said many times, it’s just no fun. However, it also explains why I have issues at folk festivals when I feel embarrassed to be in a very limited shared resource and leave behind such a fragrant air. So, I tend to allow constipation to get to me, despite hating it when it does. Just for those few days I want NORMAL poo, I never get it. I suspect those who suffer from IBS would understand (from my limited knowledge) and, of course ANYONE on these blasted TKI’s as it is a common side effect. 

And so, the poo continues, sore tummy, just a load of farts, sore tummy, diarrhea, it never stops (ha, ha). 

Fri 23-Nov-2018   

A goodly days’ work, first really good day when I felt on top all day for ages, I think I know why but I’m not sure I can tell you yet.  

There is a blog called “Trouble in Paradise” that I don’t feel I can release but explains. I am sorry if I seem to be cryptic, if it was down to me then you’d be reading it now, but it’s not. All I can say is that take being autistic and add terminal illness and a need for control and the result can be (is) devastating. 

I received my DSA needs assessment today, so all I am now waiting for is approval from the DSA for that assessment, don’t’ ask, bureaucracy rules! 

It doesn’t “give” much, the main thing is that it confirms to the university that I am useless and I get “free” text to speech software and speech to text software, both of which can be useful. 

The main point of all this paperwork and process is to ensure that  

1) I get some level of acceptance of the odd state of my brain – viz the following that goes into all my assignments 

Please mark this work for content and understanding and not for structure or surface errors of standard written English (spelling, punctuation and grammar) except where these may impede meaning.  Contact Disabled Student Support on ext xxxx for further advice if required. 

2) I get information on things that may (or may not) help but also if due to fatigue, diarreah, …, treatment in general, then I get leniency on deadlines for assignments, without going through the “you are disabled” process I don’t get that. 

Do I hate it, yes I do, I don’t need help from anyone for anything. Acceptance of limitations (never mind mortality) does not come easy to me, as you will have seen in how I debate with myself on whether I need to use my disability scooter even though I have working legs (I do need to) 

Postscript 

This has probably been my worst week since diagnosis. I may not have talked about it so far, but I was due a CT scan in first week of December, however the oncologists cocked it up and didn’t book it. For the last few weeks Teresa and I have been chasing them asking what is being done. We still don’t have a date and I’m not optimistic we will before Xmas now. 

That’s bad enough but remember back to the last scan, that the cancer may have spread to my lungs but they were waiting for the next CT scan to confirm, that is the CT scan they are currently not giving us a date for.  

So, has the cancer progressed, if it has, then that’s a step change downwards to the end that I (and we) really don’t want to hear, but we’d rather know one way or the other before Xmas. 

NO, we are not having fun, sometimes the load is just too much to carry and giving up is the easier option, for me at least. 

The Bean, Pendeen, 25-Nov-2018 

 

Wood, a trip to London and yes, more poo 27-Oct-2018 and 03-Nov-2018

Another double release, albeit a few days early, I am trying to catch up!

Sat 27- Oct -2018   

Woke up feeling sick, yesterday evening I had felt very bloated took I windsettlers (sort of gripe water for adults 🙂 ) to try and help and it did somewhat. 

However, there was a major barney (aka diarrhea like water) at 2am and that was probably what was “brewing”. 

We had a wood delivery (for the wood burner), I helped stack it as much as I could and paying the price now 

The 2nd half of my Xmas present (from the family) arrived, I had to order it as it was rather specific to me, but I will maintain the surprise by not saying till Christmas 🙂 . But thank you (in advance) Tom, Kat and Teresa. 

Hailstones this morning and feeling very wintery. 

trying new eating schedule of  

  • Small breakfast 
  • Small mid mornings 
  • Small lunch 
  • Small mid afternoons 
  • Small tea 

To see if I can get past the bloated feeling I get in the evenings and the constant hunger during the day. 

Sun 28- Oct -2018   

Got some proper work done, so far, new eating regime seems that it could be working 

Mon 29-Oct-2018   

Got in a load of logs for the wood burner, was as careful as I could be on the Right shoulder though I suspect the back and left one will come out in sympathy. 

This picture is of aforesaid wood stacks inside the house after the fire was lit, for some reason that escapes me, the cats rather like it 🙂  

It wasn’t much work and I felt full of energy before I started, that energy was soon all gone, but hopefully will pick up after “mid mornings” 🙂 

Just a word on fatigue, up until a year ago, indeed for virtually all of my life, 8hrs of sleep is the max I have ever had, 6hrs would be common and I could function on far less. 

Now? 

I usually sleep from 9pm (10pm at the latest, 8pm just as common) until 7am. Now “until” is a misnomer because it may take me up to 1hr to come around sufficiently to sit up and never less than 15 mins, usually about half an hour. 

Then in the afternoon I sleep between 1pm and 3pm at the earliest and it can easily be 4pm before I have come around enough to sit up. 

I don’t sleep continuously but usually my awake moments are minutes. 

So, I would say I sleep, on average 12 hours a day and I have two (approx.) 6hr periods when I am awake and for the last 2-3 hours, I am getting increasingly tired. 

Tired means it’s getting harder and harder to think clearly. 

Since I need to do 37.5 hours a week clear thinking for work, just exactly what do you imagine I achieve in the rest of my awake time after eating, washing, cooking, having a life? 

It’s rare I manage 7.5 hours paid for work in a day and so have to make it up during the weekend. 

It is NOT easy, I am working harder now (because the effort needed to achieve the same quality of work is greater) than I have in all of my life so far.  

When you think about “for better or worse”, Teresa certainly got the “worse” end of that deal! 

Tue 30-Oct-2018   

Ok, blood test done, results not for a while. 

The test for why high haemoglobin test was for Erythropoietin, also known as EPO (also used as performance enhancing drug!) it is the chemical that triggers the bone marrow to produce new red blood cells and is released by, yes you got it, the Kidneys! 

It is normally released in excess as a reaction to low oxygen levels in the blood to compensate by adding more red blood cells.  

The more interesting thing is that in Renal cancer in can be decreased, however the genetic “defect” that can cause the Kidney to always over produce can also be one of the factors that causes renal cancer and/or allows the cancer to proliferate (metastasise) and make it harder to treat. It can also lead to high blood pressure. 

Considering I have had elevated haemoglobin “off and on” for as long as I have been treated for high blood pressure (8 years or so), it is quite possible that the high blood pressure was related to kidney cancer and that maybe the cancer could have been caught LONG before it was. 

However, we are now “waiting” for the results of the tests and then the opinion of the experts! 

Hey, ho, this is not an easy ride and you do have to stay on top of what is going on and make sure you really DO understand. 

Next step, keep chasing the GP’s Surgery for the results being back, then see the GP to make sure he passes the results onto the Consultant Oncologist and Haematologist because they don’t get the results automatically! 

We will also get in touch with the Cancer nurse today to make sure she is up to speed (as she has direct access to the Oncologist) and also to find out what is happening about the “lung” issues. 

 One of the fun things is that the GP often doesn’t read “letters” from the consultants until you go and see the GP, yet one more bit where I have to join the dots up for the NHS 🙂  

In other news, whilst it is rare, Men do get Breast Cancer but are FAR more unlikely to check as they think it can’t happen to them  

Wed 31-Oct-2018   

At work in Penryn since I couldn’t go yesterday (had that blood test) 

Thu 01-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Fri 02-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Postscript 

What’s all this worrying about, well where to start: 

  1. I have booked “passenger assistance” for help getting the mobility scooter onto the train – not booked the scooter itself on as there seemed no way to do that! Will they be aware, does the system work? 
  2. Booked help at the Padders end to get it off, will that work it’s a much more impersonal and busier place 
  3. I asked about access onto the tube, they said it will be OK, however the wheels on my buggy are rather small, so will it work or will I get stuck. The biggest worry is the gap between train and platform. YES, I did check on the TFL accessible tube map and I did email them to double check, but I’m not convinced. Still, I do have Teresa with me which is a godsend as I know she will scurry around to find help if needed. 
  4. Ditto on arrival at Kings Cross 
  5. We booked a hotel that looks like it will work, is nice for Teresa, is accessible by me, will it be? 
  6. Then there’s the whole course thing 
  7. And all of that in reverse 
  8. Will the fatigue be manageable without an afternoon nap 
  9. Will the diarrhea be manageable 

Do I need to go on? 

Week 2 

Sat 03-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Sun 28-Nov-2018   

At work at home and worrying about London and the Autism course next week 

I do try to use the worry to help ensure that I check everything I am taking, dotting eyes and crossing teas on all the travel plans, but still, … 

Mon 29-Nov-2018   

Work in the morning and then off to London. 

The original notes for what follows here were written contemporariously (or as Google tells me, contemporaneously, the spell checker couldn’t handle my “guess”) and can be seen “in the raw” in a similarly named blog entry. 

Try to compare and then realise how hard it is for me to turn them into meaning. Now Teresa doesn’t edit this, even more challenging! 

Here we go: 

There is a new 1st class lounge at Penzance (which includes the sleepers as we are considered to be first class – probably because we have paid an arm and a leg!). A helpful member of staff in the lounge sorted out our booked assistance. 

Boarding was easy and the buggy made it into guards using the ramp.  

Teresa had her customary red wine in the lounge but hated the new layout, more club than old style pullman. I wasn’t as fussed, but I know it’s an important part of her sleeper experience on the up-country section. 

After her wine and my cup of tea we retired, sorting out the cabin, getting nighties out, …, then to bed. 

The train stopped between Truro and St Austell (Snosel if reading the original notes, at least that’s how I spell the “local” name for St Austell) cos someone saw sparks from the rear coach (the guards van where my buggy was!) as it left Truro. I HAD to get up and ask our sleeper attendant and she told me what the problem was and that the driver thought it was all ok and he would do a “quick” test. After being stationary for over an hour we were on our way.  

By now I was totally awake and stressed that we night have to change trains I didn’t sleep and that was true all night. I guess I dozed a bit but really not much so today (Tuesday) will be tough with fatigue.  

Tue 30-Nov-2018 

We pulled in Paddington 20 mins late (about 5.30pm) and I got up and shaved about 6am, dressed and had breakfast. Teresa will have OJ (orange juice) for now and will wash and do her makeup in Padders 1st class Sleepers lounge.  

Passenger assist were a bit slow as they arrived when we were still in bed (when the train pulled in) instead of when we had requested and had to come back! However, they sorted out the ramp and I drove the buggy down. 

The tube experience is yet to come! 

No probs getting the buggy off the train and getting to the tube. I was stressed and we nagged TFL to send someone down with us to make sure the tube was ok. There is a designated disabled coach that lines up with a raised bit of platform where that is needed, but there is no marking on the platform where that is. Maybe you don’t need it at Paddington, but you may need it when you get off at your destination! It was bit of a bump across the gap but ok. Ditto at Kings x.  

7.40am Teresa needs coffee – the coffee machine ion the first-class lounge at Paddington was out of action, she was NOT happy! We went to Cafe Nero at Kings Cross for her coffee and my hot choc.  

I also picked up a baguette for mid mornings then we walked to the hotel, well me on the buggy, and left the suitcase with them. 

Onto the training centre at NVCO. 

The lawnmower (plus Bean) has landed, got here bout 9ish? Teresa escorted me to the room and was reluctant to leave me, worried I might need something. I persuaded her to head off to enjoy her day.  

From then on all was ok (ish). People were not that chatty (with me anyway) but they were mainly professionals (in the care professions) and so me being autistic they probably feel we don’t have a lot in common?  

Poo wise, it was full on constipation. Not a surprise after not a lot fluid but worrying hope it eases  

Course was ok as expected   

I was increasingly worried about poo (or lack of it) so I tried an experiment at lunch and raided grapes and cucumber … the results can be seen in this sequence of txt msgs that I sent to Teresa … coincidence???  

13.21 Tummy a mess. Aches and says wants to go and nothing happens but a bit of fart. Driving me nuts. Drugs time tonight!!!  

13.21 I tell a lie a tad of progress!  

13.22 I tell a lie. Explosive progress!!!  

13.26 I told another lie now we are talking Barney. All in the space of a few mins. Not sure what’s next   

14.25 msg from Teresa: Ok room is titchy and you won’t get the buggy in unless you block door and bathroom! On the other hand, you will need buggy for the maze of corridors! We need to talk to the women on desk to see if there’s a service room where you can leave/charge it.  

14.59 Oh no. Bean in panic about scooter anywhere away from him. Will let it sleep in the bed and bean will sleep on floor or in the bathroom. Major panic xxx  

We Finished at 4pm and Teresa was downstairs waiting for me and we went back to hotel.  

She had been visiting London museum and then spent time at the hotel, checked in, showered and writing in the nice bar area.  

Mega tired and txt from Teresa that room too small for buggy, mega panic, but, as it turns out it fits, albeit just, at bottom of bed.  

I had nap 4.30 to 6pm and just woken up and am down in the bar. I feel awful with just woken feeling. Like a zombie.  

We didn’t want much tea and the hotel bar just did “snacks” but Teresa had a nice plate of Charcuterie and I had a bit of Cheesy Macaron and plus chicken and chorizo meat balls (two). It did the trick. Then back up to the room by 9pm. 

Oh, and tonic water for drink for me, nice glass of red for Teresa. 

I hope I will crash again and so feel more refreshed tomorrow, right now is living dead time  

Wed 31-Nov-2018   

Slept to 6. My sleep was very broken but …. Breakfast was ok, mainly continental and I had some sort of crunchy type thing. Teresa is getting me sandwich from Pret a Manger across the road then off we go.  

At breakfast, Teresa and I had a tricky conversation as I tried to talk thru my concerns about not learning new stuff on the course and so I can feel myself switching off and I think I need to try to find out about our assignments so can use that as focus? I think the conversation was “difficult because Teresa was caffeine deprived and I was very “needy”, never a good combination. We survived. 

Here mega early and reported yesterdays blocked disabled loo hopefully it got sorted overnight. 

As we left the hotel, Teresa popped over the road to Pret a Manger and got me a Xmas sandwich. Rain had been forecasted but wasn’t a problem. 

Everyone seemed keen to have Luke (the course boss and presenter at the training) as their supervisor so I decided to be chilled and give the PhD student, who was to have half of us as supervisees, a chance.  

I need to find out what the assignments are as feel I am not learning anything new from the presentations. I did ask about yesterday about the course objectives for him, the University and the NAS (National Autistic Society) who paid for the course to be developed. His answer made sense to me but not appropriate to comment here. However, it did confirm I wasn’t going to learn anything new. 

I did make sure I asked him about the assignments but I only got a few seconds, however I felt it enough to “scare myself” to paying attention to look out for anything useful in the assignments. 

My body remains “poo light”, so there was another text exchange with Teresa (corrected for spelling and a little clarity) while I was waiting (in the loo) for activity. 

12.03 Went to loo prior to session starting, now at 11.44. Nothing happening. Really wanted to attend this session but as it started massive pains and had to return to the loo. Yup thats what it wanted. Now need to make sure thats all there is. Drives me absolutely nuts being this controlled. Definitely worse than a month or so ago 🙂 .   

Oh well better out than on. Time to see if it will now settle down.  

12.36 30 mins later increasing pain so back here and bottom touches loo and massive Barney. I am fed up!!!  

BUT no need for Benisons I can cope  

14.40 Took an (Imodiuminstant last time but here again with another barney and taking another instant. Now I am really fed up   

Chronic headache too, prob dehydration now!  

A full “Barney” is a very “watery” diarrhea attack and as such is also dehydrating – that’s why diseases like Cholera which it very much resembles in the bottom department, are so dangerous! 

Teresa met me as usual and we “walked” back to the hotel. I was wrecked so we went straight into the bar, had something to eat (same as yesterday, of course) and we went to bed for strictly and by 7pm I was laying down. I was awake a bit due to snorkling.  

Thu 01-Nov-2018   

At 6am I was awake with a sore tummy and so poo time, not feeling great.  

I feel very nauseous at breakfast and will try minimal eating during the day to see if it helps.  

Breakfast just crunchy nut thing (like yesterday) but no OJ or toast like I had yesterday. 

Just had my breakfast drugs (blood pressure and nausea) and back on Ondansetron today so hope for better nausea control however is also constipatory which doesn’t help the other problem!!!.  

I also took a Loperamide so double blocker and hopefully my bottom department can have a normal day – last thing I want is “trouble” waiting for the train (from 4pm to 11:45pm) and indeed on the train 

Well, it lasted to 2.30pm then start of pain warning. Yes a Barney but not severe so took an instant anyway just in case.  

Tummy remains sore but ok. Tummy prob means intestine, I think.  

Nausea is ok but   

Teresa collected me 

Both Teresa and I simultaneously wondered if it (diarrhea ) is the water as she has noticed things being “easier” for her. That’s not the same as it is for me but …  

We are at the hotel in their lounge (albeit checked out) as it’s a nice interim spot to start our 7hr wait from now (4.25pm) to the sleeper depart at 11.45pm though boarding is usually 10.30pm.  

Not drinking London water means no Tea, no ice, … I bought a bottle of (Welsh) water from Pret a Manger and hope that if it is the water, the change will settle my body as its just now sending alarm messages!!! As soon as Teresa gets back with the tonic water I will dash to the loo!!!  

No action but took another loperamide just to be sure. Diarrhea on the tube or railway stations is NOT a nice idea!!!  

Bout 6:30pm? Over to Kings Cross to eat at XXX – a nice meal then about 8pm onto the Tube for Padders. The tube worked as well as before and by waiting till 8pm (I wanted to go at 4pm!) we avoid the rush hour which is a good thing with a buggy! Kings X tube DID have a sign above the platform to say where the disabled coach would arrive. 

Waiting at Padders is tedious but not for too long. The 1st class lounge is useless, the coffee machine still not working, the disabled loo out of action. They have 3 loos, two with a shower (great for when you arrive, well for the first two off the train!) but it means everyone else is sharing a single loo. Not a problem this evening but still, they have just put it all in, you’d think they would think! 

Went for sleeper at 10:30pm, was expecting customer “assistance” to help, however the main cabin steward (don’t know the proper title) was on duty on our coach and I knew him from my previous journeys, he saw the buggy, expressed surprise and moved us to the disabled berth. They can’t book it as such as the loo next door (disabled access) is out of action. However, it was nicely roomy. I would not book it for me, it is needed for folks in a wheelchair who aren’t able to walk, but for this trip we weren’t displacing anyone and it was also closer to the guard’s van. The steward went down to the guard’s van to help fetch a ramp and the buggy was loaded. We never saw “customer assistance” 

I did have some comments on the effectiveness of the cabin for disabled access: 

Emergency button air con control out of reach of the bed. Door control lights shine right on your eyes.  

Grab handles to transfer to from bed  

But it was just nice for us to have space to spread. 

Fri 02-Nov-2018   

Customer assistance was waiting at Penzance, albeit at the wrong coach because we had moved! 

Still they did the job and away we were, home and bed! 

Postscript 

Please do try to compare this with the RAW version if you ever thought I was even a little competent at writing. This version has taken way into double figures of edits!