Letter from the North

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 

 

 

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