Letter from the North

Self-care, depression and our friend poo – 20-Apr-2019

Sat 20-Apr-2019

Easter Saturday, Teresa is fast asleep. First day of my three-day break – I have decided to stop trying to do work, assignment or anything else and try to unwind and relax.

I will still faff around a bit but fundamentally I am going to try and do as little as possible to see if I can’t then take a good run at the assignment (deadline is in a couple of weeks!)

I will need to try and put up Teresa’s seed incubator, actually it was assembled at Xmas but after blowing down twice and being tied to the wood store, it needs screwing to the woodstore so Teresa can plant her seeds.

Whilst I need a break, it only seems fair I have a go at doing this today, it’s not a big job and will mean a lot to her.

Daddy one day is the well-known refrain about me as I like to think things through, so I need a nudge to complete. Teresa is saying she is buying seed compost this weekend and planting no matter what, so I find myself well and truly nudged and quite right too 🙂

Off to watch some Beiderbecke

I put up the Seedhouse, I decided to use string not screws because it makes it easy for Teresa to move it around when needed and I am not here to do it, horrible but have to think about these things 🙁

While I slept Teresa went out shopping for compost and stuff and came back happy and smiley – enjoyed buzzing about in her “new” car and no bean to get in the way, works for me 🙂

It’s not a good day for me, physically it’s OK, mentally/emotionally it’s a crap day.

Poo, well it’s always here

Sun 21-Apr-2019

Hmmm, my new day is not starting any better than it finished and as it’s Easter day and everywhere is full of the joys of resurrection, I am afraid my thoughts are of a much darker tone and I will do my best to capture them.

Yesterday evening I was fed up with TV and suggested to Teresa we listen to some music, and so we did, but at the end I (for reasons I cannot explain) gave Teresa a quick tour through “Beans Anthems”, a place on our music system where I keep songs/tunes that have an importance for me.

Maybe one day, I will explain the contents of that directory, but when Teresa said that she would make sure that my children got a copy of it “when the time comes” I was pleased in one breath and incredibly sad in another because of what that phrase means

We all die, that is an unavoidable fact, it comes to all. Some never know, it catches them out of the blue and they are gone. Some know it’s coming and it’s welcome, whether to end suffering or at the end of a long and happy life.

Some, like me, live in a frozen moment, I know the what and the how and the when has already passed, I am frozen in the moment before when, held there by medical treatment, held there until that fragile string snaps and it WILL snap, that’s the nature of my cancer and time restarts and death comes galloping on, all the more enthusiastic for having been stopped.

Untreated I would be dead now, the treatment holds my life in its hand, imperfect as it is, I am grateful to it whilst at the same time loathing what it does to my body and how hard each day is.

You can live for the day and I do try to, but I’d like to be alive to look back on the day with pleasure, but I can’t allow myself to view good days as future memories when the future is so uncertain. So, they are an ephemeral feeling as they pass me by; but I must let them go and not try to hold them.

Apart from the unpleasant side effects of the treatment there is no sign of that sword hanging above me by a thread. Every three months I get a picture of the thread, how frayed it is, whether it looks like it is getting weaker. Trying to judge if it will snap today, tomorrow, next week or will still be there in three months’ time.

A different and more powerful analogy for me is standing there with the hangman’s noose around my neck, my death sentence has already been passed (the cancer). Al I am waiting for is the trap door to open, but no, it stuck (the drugs) and I am left here standing waiting for it to release itself.

It’s no good telling me how lucky I am, I am the one with the noose around their neck, still standing on that trapdoor. Yes, I can move, I can go and visit people and places but I take that noose and jammed trapdoor with me wherever I go, you can’t see them, everything looks OK, but I can feel the noose around my neck and the trapdoor beneath my feet and I can hear the creaks and groans of that trapdoor as it tries to free itself and open.

Nobody can remove that noose and fix the trapdoor, if I am lucky constant maintenance will hold the door in its precarious state but the repairs don’t last and it can only be cobbled back together so many times (3) before it finally fails.

That’s not a fun thought on this morning when people are enjoying their eater eggs (and I WILL enjoy mine), celebrating everlasting life, I don’t believe in resurrection, certainly not into any form of life I could recognise, so death (of this life) for me is final.

There are really good days – like Teresa’s birthday, Christmas and Easter, but that noose reminds me that this one may have been the last one.

Yes, I know, that is true for all of us, but for most people they are not aware the noose is there, it isn’t tugging on their neck, the trap door isn’t loudly creaking daily worrying you that it’s on its last legs.

So, why do I write a lot about poo, well, it’s fun because people think it isn’t and I like challenging perceptions.

But also, the constant battle with poo, the diarrhoea and constipation are an everyday reminder of that noose and trapdoor. The fatigue and my need for an afternoon nap is a constant reminder of just how fragile is the stick blocking the trapdoor from opening.

Scan day, the letter for that arrived on Friday, how did that come around so quickly, is the moment when somebody gets to look at the state of the trapdoor, they make me wait a few weeks and then I get to see the picture, or at least the description of the picture the “expert” gets to see.

The reminders never disappear.

We continue to fight to get compensation for the damage I suffered in the accident which I still suffer from today, I cannot sit or lie comfortably due to pain in my shoulder and particularly pain in my coccyx.

The last expert decided that the pain I have was due to the accident but is now due to the cancer. Well he did google Pazopanib that says it MIGHT cause joint pain, so that must be the reason I have it now. It may well be; however those two joints were damaged in the accident and wouldn’t be suspect today were it not for it.

So, 18 months after the accident and half way through my initial prognosis of 2-3 years (IF the treatments work) I am now due to see yet another “expert” the third, one a GP, the second an orthopaedic consultant and this next one (the last one we hope) an orthopaedic consultant who is also a cancer specialist – not of kidneys, but at least he should have a better understanding!

That is yet another reminder of the creaking and groaning, what is the point of compensation if I’m not in a place to enjoy it?

The only reason we had the money to do the work on the Camper van is that I sold my Contrabass Saxophone at a significant loss (less than half of its well over £20,000 value) because I will never get a chance to play it again and it was just sitting there.

I know I am incredibly lucky, without the accident I would be dead by now, I should be grateful and at one level I am, but that doesn’t mean it’s all OK.

Being dead is not the problem, at that point I am beyond giving a damn. I cannot even care about those I leave behind; they are on their own. It’s the dying that’s tough because I am aware of what I will lose, I am aware of what they will lose.

I can still feel that noose around my neck and nothing can change that, I can still hear and feel that trapdoor creaking and groaning.

Every Easter day I get to celebrate means that I am less likely to see the next one, the drugs are guaranteed to fail to hold the trap door closed, it’s only a matter of when they fail NOT if.

So, I am sorry, Easter day, despite the glorious sunshine and chocolate or indeed the meaning of resurrection if that is important to you, is NOT a happy day for me, it’s just another day I may never see again.

Should I be grateful I am still alive, yes, of course I am, very much so, but that noose and that creaking trap door are impossible to ignore,

Outwardly I act and talk as if it’s easy, I suspect many in my situation do, some may even believe it, but deep down, we all know what’s going on and in the quiet and dark moments I remember and I weep and that is my Easter message, a lot of tears.

So, to lighten the mood, back to poo, after last night I am concerned but later this morning things were almost normal, but the tenderness in abdomen and/or feeling of a (it varies) need for the loo means I never forget what is going on, I’m not obsessed, but it never goes away!

Ordinary afternoon nap

In the afternoon I ended up watching Top Gear then Teresa sat on my bed (I had moved to an arm chair) watching birds and then both of us watching Top Gear.

Made a sort of curry yesterday from leftover filling for the actual poo pie and had it with rice this evening. Teresa preferred tagliatelle, but as expected didn’t like it, leaving rather a lot for me to finish off.

Oh well, I was always known as dustbin dad as I hate to throw food away and concoct all sorts of meals to use up leftovers.

I reckon I now have enough curry to feed me every day for at least the next 7 days. That will be boring.

As a precaution I took a loperamide just in case, later on it felt like a waste of time but no, just a lot of fart and that was it.

However, as I write 15 mins later, I suspect there is more to go, my abdomen is getting very sore (a bad sign) and I feel pressure.

Could be more gas but I have my doubts!

A few ideas for the assignment but nothing concrete in terms of writing.

Nope it was just gas, oh well, …

Mon 22-Apr-2019

Hmm, nothing happening in the digestive department, I fear we have a shutdown (aka constipation), we will see

Tue 23-Apr-2019

Well I was at work as usual and no nothing happened yesterday

Mid-morning, strong messages but no, I was right, locked solid constipation, push any harder and there will be bleeding, if I haven’t already pushed too hard.

Decided best act was to get home where I had drugs to soften and easy access to private loo in case it then flipped into the other.

Got home, instead of my cheese sandwich had a curry for lunch – known to be a diarrhoea trigger.

Had a nap and then yes, we have movement, relatively normal but I suspect cork out of bottle syndrome will apply

Yup, 1/2hr later we have explosive pebble dash. I refrained from Loperamide to try and avoid the violent swing from one extreme to the other.

For the rest of the evening, warning signals but no activity, crashed out at 9pm and that’s pretty much it

Wed 24-Apr-2019

And normal poo this morning well normal except poo in the morning is now highly unusual, evenings seem to be favourite.

However, no Loperamide yesterday and no blood so fingers crossed that battle is over. My abdomen is still very sore and I need to ensure I eat “mildly” trigger foods today just to stop things locking back up again.

This knife edge I walk is a nightmare, an acceptable price for living, but that doesn’t make it easy.

Thank goodness for being able to work from home, although the primary reason is to manage fatigue, nowadays, the confidence that comes from having both a loo easy to hand for as long as I need it (and that is often 15, 20 minutes) and access to drugs to help manage issues, is priceless.

It could stop me going out, but with three folk festivals, two concerts, an autism conference and assuming I carry on with the MA, six trips to Sheffield before Xmas. I’m not avoiding going out, but I will have to ensure that I am prepared and alert 🙂

This violent swing between diarrhoea and constipation is a relatively new thing with my digestive tract, but that’s the nature of these cancer drugs, their side effects ebb and flow and change as the toxic effects accumulate vs my body adapts to them.

There was a post to our members only Kidney cancer Facebook group so I cannot repost it or the picture, but I will summarise:

A picture of someone with a shocked face with the words “The moment when you realise it was not just a fart”.

For those scratching heads we are talking about the point when what you thought was wind turned out to be a change your knickers moment.

Mildly embarrassing when you are at home, excruciating when away from home!

That plus those farts are often pretty vile smelling (I call them fatal/killer farts for a reason!) and they come out when they do, there is only so much self-control you have, plus the pain if you don’t is horrible and …

Well, there were a lot of “me too’s” to that post, one of the joys of staying alive with renal cancer 🙂

If I dashed to the loo every time I felt a “fart”, I would be exhausted from all the “running”, the majority of time that is all that it is, but sometimes it is explosively not so and you don’t really know until the moment it’s clear it’s not gas or not only gas!

I am pretty open about this stuff, but when I left work yesterday I just said I need to go home, not because I am embarrassed, but others are more uncomfortable and there is only so much education you can offer people and in my office they have the autistic and non-binary gender stuff to deal with every day, that plus the generalised cancer mess.

If they want the full details, they can join you in reading my blog 🙂

Well today started out, surprisingly, as very normal poo, within an hour it was less so and by lunchtime explosively so and time for loperamide.

That is 24 hours from locked up constipation and needing treatment to full flow diarrhoea and needing treatment and at no time in-between was I comfortable, it varied between ache, bloated, painful, need for loo, but trying not to let things settle down, … And all of that was proceeded by 2 days of nothing following a day of free flow following a couple of days of nothing.

In an earlier blog I tried to describe it as careering along in a car with brakes and accelerator either full on or not working.

It’s also like walking an invisible line between two cliff faces (faeces 🙂 ?) in the dark, you have no idea where your next step will take you or how to tell which way the path goes. You think you know, you don’t, it’s a lottery.

As for carrots helping eyesight in the dark, well they might but they are guaranteed to trigger diarrhoea so they are out 🙂

I spoke too soon, post evening meal two, increasingly vicious attacks, the second after I had gone to bed, another Loperamide.

No idea if connected or not, but then I didn’t get to sleep until gone 1am, just after I had popped to the loo because it felt necessary, it wasn’t, a small amount of fart and that was that, but, I suspect, it was enough to re-assure me that things were now stable, having been bad all day and I crashed

Thu 25-Apr-2019

Dragged myself out of bed around 7:15am (as opposed to 6:15am) and feel awful, yesterday was a crap (pun intended) day.

Saturday we are planning to go to the Porthleven Food Festival (LINK), clearly the food is out of the question, but the parsity of loos means I will need to be careful on Friday and make sure I take preventative drugs on Saturday morning, I’d rather pay the price for that later than deal with a diarrhoea attack in a place so restricted for disabled toilets! I can manage the single porta loos if I have to but it’s not enough space to clean up after an attack!

Blah, no fun, not stopping me, of course, but no fun!

Back to work

Blah, heard a car outside my office and then voices. Now the track by the outside of my office is NOT a right of way, we have a right of way written in our deeds, it is what permits me to use it to park my car behind the house – not blocking the track.

The track is also used by the school for access for maintenance.

The car that had just parked outside my window had no right to be there. It blocked my ability to get my car to the road and was downright anti-social as my car was visibly there.

I went out, took photos to make sure I had a record, spotted a gaggle of what I suspect were parents in the car park talking, same sorts of voices and laughter I heard coming out of the car. They had to have seen me taking the photos but nobody approached me.

I went for Teresa to provide moral support before going up to talk to them and needed her to help ensure I kept control as under such circumstances I am likely to over react in the face of “I was just popping to the nursery/school/shops, I will be gone in a minute, no harm done!”

Almost certainly a parent dropping off a child to the nursery/school, they park in all sorts of strange ways, obstructing cars in the car park, but the one on the track was a new thing.

Anyway, Teresa threw on some clothes and came out with me and the car was gone, I suspect the offender was in the gaggle by the car park and once I was out of sight hurried and moved their car and the whole gaggle had evaporated.

Mountain out of a molehill, yes from a PNT (non-autistic) point of view, yes, live and let live.

From an autistic point of view, it was

1) Illegal – not a vehicular right of way

2) unnecessary – there is more than sufficient street parking available

3) Discourteous – they had no idea whether I needed urgent access to the road for my car

4) Selfish

I felt trapped and the state of panic I was in in indescribable and will last for at least the rest of the day.

I felt well within my rights to fetch Teresa’s car and block them in. In the old days I would have done and yes it may have been out of proportion but I wouldn’t have cared. Nowadays I can recognise that my actions would be seen as wrong and I would be the anti-social party.

So, I didn’t do that, I have not sent the photos to the police or the school/nursery and everyone can pretend it never happened. Unless it happens again that is!

Why am I the one that has to be decent when the person involved clearly simply did not think that their action could have caused any distress.

You can’t argue with selfish people who only think of their own needs, that car could have blocked the track above my car and left me clear access, so even if they had some unknown need to be so close, they could have been closer AND not in my way.

As an autistic I get very stressed when I see people doing selfish things and desperately need to a) inform them and b) make them do something about it.

Guess who is ALWAYS in the wrong when that happens?

Not sure if there was any poo today, I feel there was because I had some poo curry (plus tagliatelle) left over from Teresa’s failed try of it and took a precautionary Loperamide, I wouldn’t have done that if things were locked up.

Fri 26-Apr-2019

Hmm, well whatever else, today was a barren day for poo and my last attempt said – constipation time! I even had poo curry tonight and nothing.

Took a softener (Docusate) before bed and hope by morning things are moving because the longer I wait the more locked up it gets and then things get really painful. Took another about 3am.

Took a 3rd softener this morning and by mid morning a bit of relief!

Work was fine today, getting along fine, not much else to say.

Postscript

I need to remember to write about the whole high and low functioning autism over the weekend, it is an incredibly divisive battle in the twitter verse and I suspect in general and there really is no need.

Otherwise, it has not been my best week and I have been rather reflective this week. The title uses the word depression because I believe in calling a spade a spade. It’s not the end of the world, I knew I was down, what I was down about was quite sufficient to depress many people so I didn’t feel bad about it, I explored it, talked to Teresa and moved onwards. What other choice do I have?

The Bean, Pendeen, 28-Apr-2019

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