Month: January 2019

Assignment takes over – 19-Jan-2019

Sat 19-Jan-2019

Burli and Jane are happy with the new bed

Sat 19-Jan-2019

In the office by 7am, finished first draft of last week’s blog ready for publication tomorrow and now time to get on with my assignment, these next two days are crucial for me to finish the first draft and start editing as I only have 10 days left and six of them are work days when I only get an hour or two at the end of the day when I am most tired!

Pretty good work on the assignment, it is slow, but I am getting there.

Moved my assignment work to the DSA laptop, which is what it’s for, leaving my work computer for work.

The two computers are on opposite sides of the office and I just spin my chair across the room, it’s like two different worlds and, I think, psychologically helps put me in assignment mode.

I also now produce the blogs on this computer which is nice

Diarrhoea was bad again this evening, however after normal poo in the morning and two, increasingly severe sessions this evening, it settled down once I was settled in bed.

Sun 20-Jan-2019

And normal poo this morning!

Every week I count out my various drugs, sorted into days, this is the typical weekly detritus in finished packets, the packets vary, the number rarely does!

Drugs, drugs, nothing but drugs

Last week’s blog has been released and I continue with the assignment

Mon 21-Jan-2019

Awards do matter because they help raise visibility, of course there are a heck of a lot more people who deserve awards who are not in the public limelight, but hey, it’s an imperfect world (says the perfectionist!) Richard Bacon: Why Rachael Bland podcast award matters

I need a clock above my desk, without one I have no idea of time at all, NONE, you cannot understand what none means, it could be am or pm, it could be 2pm or 10pm, I have no idea. Yes I can look on the computer but I hide my taskbar for space and it’s really small print and it’s not just a glance and I can glance every few minutes because a minute and an hour feel the same to me in terms of a sense of time passing. I have written and talked in the past about my sense of time, effectively ALL time (past present in future) is now it’s simply a matter of what I am considering at that moment.

I like to glance and see and I find the round clock face easy to “see” and I can tell where in the day I am (so long as I remember morning or afternoon, and since usually I am working during the day and if in the evening it is for a limited period (7pm to 9pm) I can usually remember when in the day I am!

However, I now a second desk opposite side of the office and no clock in line of sight, stupid as it sounds, a second clock is on order, a different colour so I know where in my office I am – yes, I lose track of that too!

Today, I bought Teresa a new (and decent) laptop. She has been lusting for one and she does so much for me for so little. I subsidised her new PC to make sure she got a more powerful one because she always clogs her PC up with google chrome and loads of tabs and “stuff”.

The money came from the money I got paid for the Contra which is supposed to be money for me to “enjoy”, well, it is being used for that, because I get pleasure out of doing something nice for Teresa and a good chunk of what’s left will be used to upgrade the campervan which (for now) is for both of us.

Tue 22-Jan-2019

Been in the office this morning, then sleep.

7:15pm, don’t want to go back to assignment, but decided to get one idea into the document, half an hour, easy?

Nope, word decides that it will refuse to work, files corrupt, work lost, total fuck up. Still got what I had before 7:15pm but even so.

Ok de-install office365 and re-install – annoying but fingers crossed.

Not stupid all my work is stored on a backup disk AND in the cloud and hence also on my other computers – belt and braces!

So, turn around whilst word is re-installing and my saxophone goes flying across the office (3’ so no short distance) no idea how I knocked it.

I snap, the only thing I can do to stop myself smashing things (sax through the new laptop, …) is scream loud and long and profane. It worked, I kept control, in the past I would have actually succumbed to melt down and I WOULD have done just that (sax into laptop) and to hell with the consequences.

So, now the anger and stress are coursing, adrenalin pumping and I have to keep in control, not get cross with Teresa (hardly her fault!!!!) and from past experience days for stress to go, I only have ONE day to get assignment to Teresa for editing to make the deadline in a week.

Panic, …

Wed 23-Jan-2019

A surprisingly decent nights sleep

Poo, diarrhoea, the story remains the same.

Buried in the assignment as I have six days to finish and the first draft is not close to being ready

Thu 24-Jan-2019

Will be buried for the rest of the week (and weekend) in the assignment so unless it’s earth shattering it won’t appear here.

One thought is how exhausting the mental processes are to do this, I am literally physically and mentally wiped out. I know what this sort of writing is like I did it evenings and weekends for a year in a caravan away from home. NO problem. It might be a few years later, but no way outside of the cancer and drugs has my stamina wilted that much.

Still, I am learning all of the shortcuts and techniques I need to stay on top of the 2nd assignment, it’s just a shame that the 2nd starts as soon as this one finishes so I get, at best , a week’s break and even then I have a trip to Sheffield to start it and that takes out a good chunk of my life in recovery.

Oh well, swivelling chair and back to the assignment, toodly pip, …

Fri 25-Jan-2019

The blood has gone, so no need for squeamishness (this time)

A trip to the Vampire today, because the renal cancer causes my kidneys to generate too much ‘epo’ (Erythropoietin) that causes my bone marrow to produce too many red blood cells, I end up with a high haemoglobin in my blood tests (I’ve talked about this before). The problem is the blood thickens increasing the risk of blood clots, stroke and liver damage. So, time to get it down. The answer appears to be good old-fashioned bloodletting! They take out blood and since the volume is replenished quickly but the red blood cells slowly, I get dilution and a normal, or at least a safe, haemoglobin level.

This morning we saw the haematology consultant at Treliske. Arrived an hour early because I am paranoid. Saw him an hour early! He was brilliant and the blood letting commenced.

Because I take a lot of drugs to control my blood pressure, instead of their usual 450ml (0.8 pints) they started with 350ml (0.6 pints). I didn’t faint (lowered blood pressure) so chances are they will up the drain more next time.

Brilliant, future sessions can be done at West Cornwall Hospital (like the CT scans) AND I can see the consultant there as well as he comes down alternate Tuesdays.

The NHS at its best.

So, had a blood letting today, another in two weeks, another two weeks after that and a third a month after that and then we’ll see. Chances are this will be a regular routine but not one that bothers me.

That said, when I told him I was autistic he said I didn’t seem to be, I maintained eye contact and communicated well. I replied “I am a good actor”! We had a brief conversation about how what he heard me say may not be want I meant and I what I heard him say may not be what he thinks I think it was. That was why Teresa was there with me to handle the translation if I failed, I didn’t, phew!

Back to that assignment, bye, …

Postscript

The announcement of these blogs is private to my Facebook friends, the blogs themselves are public if anyone wanted to find the web site (they don’t 🙂 ).

So, I decided to enter the world of twitter, I am an incredibly small minnow, I have no desire to be a “star” but if you want to hear about stuff a bit sooner or get announcement of the blogs sooner or just want to see me there I can be found as @beanbottomley – you can’t miss me, I’m the one with one follower (Teresa 🙂 )

Oh, don’t worry I may have been pretty quiet on the poo front, it hasn’t, I just have the assignment on my brain at the moment and nothing else matters. Normal service will be resumed next week.

The Bean, Pendeen, 27-Jan-2019

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