Month: September 2018

Cancer and the sound of silence

The Sound of Silence

I have been writing this post for some time, it was written about this time just before the results of my CT scan back in July 2018.

I had my latest scan a few days ago and the results in a week, now seemed a good time to publish this:

If you saw me at the Pz Litfest (I don’t know how long that link will be valid as the 2018 festival is now long gone) on Thursday (5-Jul-2018) you’ll have an idea what this blog is about, for anyone else, it stands on its own.  

Listen here BUT  

  • do not listen to the words 
  • do not listen to the melody 
  • try as best as you can to “feel” the music not hear it 

And hold that thought, … 

I am autistic. That is often assumed to mean I don’t have emotions or empathy. The perception and reality couldn’t be more different: for emotions the problem is accessing them, NOT having them; for empathy it’s often a case of too much, not too little, it can overwhelm me. So, either it is as if I am experiencing what is happening personally, or I am unable to show what I am feeling and appear to not care at all.  

That includes things like TV programmes (or even books). I know they are not real, yet for me the experience is very real, hence I will often cover my head with a tea towel (or less melodramatically, close my eyes and cover my ears) for scenes that Teresa needs to watch and doesn’t want me to fast forward through (as I would if watching on my own). it’s just the same in real life: other people’s emotions can overwhelm me. It’s not that I don’t feel for them it’s that doing so triggers strong emotions in me, as if I am in their place. 

What is going on? 

If you look at the wiring of the brain, one of the big differences in autistics is that we have fantastic local wiring (often too much) and rubbish long distance wiring. So, we tend to have intense local focus but very slow communication between different centres of the brain. 

That results in “processing” issues, that is, it takes time for different sensory inputs to reach the processing centres of the brain (awareness) or emotional centres, … and in reverse from those centres out into our interfaces with the outside world.  

That is a highly simplistic explanation, but it is a valid one all the same. 

So, just because I intellectually know that my reaction is silly, I cannot control that reaction because the two parts of my brain do not communicate very quickly – or indeed at all sometimes. 

So, for instance, I may feel compassion for your situation that you’ve just told me about, but it will take me minutes to work out how to respond. Should I hug? Should I say something? What should I say? The whole process overwhelms me, and I become paralysed, and you think I don’t care! 

I have learnt that, when I feel love towards Teresa, for example, to act on it at that moment (and kiss/hug her) no matter the context. I cannot allow myself the time to think if it’s an appropriate moment and I can rarely explain why I felt that impulse to kiss/hug. Teresa has learnt to accept these “outbursts” as the “gifts” they are since they are spontaneous and she so rarely gets spontaneous emotion from me, especially when she is upset because either I get caught up in her emotion and am dealing with it for myself and have no spare capacity to support her, or I cannot process her emotions and don’t know what to do, so do nothing, then I seem to be an unfeeling cold fish. 

So, back to that thought you are holding, because, as I have explained elsewhere, I do not process language or visual elements very well at all. Music (patterns not visual/verbal) is a tool, indeed the ONLY tool I have found that allows me to get direct cognitive access to my emotions, that is I can feel and respond to those emotions in real time and connect them to actual events. 

I have learnt to deliberately use this to allow me to access my emotions and feel them. Without music, I have little control over when, and often if I will feel or express them. With it I will often be able to directly experience the emotions that are surging away inside me. 

I learnt this by (detachedly) observing how certain pieces of music constantly trigger the same emotional memories. Now this is common in most people, but for me I realised it was the ONLY access and so I started to use it for that purpose. Indeed, I can often access one emotional memory using a piece of music usually associated with a different memory if the two are similar enough. 

Readers of the first section of my “biography”, assuming I get it published before I die, will be aware that Simon and Garfunkel were powerful musical influences in my early years, followed by Prog Rock, Folk Music and even some Thrash Metal in later years. 

Despite Bridge Over Troubled Water being the first record I bought, it was Sound of Silence that lodged itself deep into my emotional psyche. It was such a simple arrangement with such powerful lyrics, it allowed easy access to emotions, particularly those of loneliness, and I believed could never be improved. 

Now be wary of that phrase “powerful lyrics”. I rarely hear the lyrics, but learn them by reading from the lyric sheet while listening. I cannot process words being sung and process the music at the same time, so I know the musical “feel” of most songs long before I know the lyrics, if indeed I ever know the lyrics. 

This is so true that even when I listen to a song I know the words for I have a choice, either listen to the music or remember the words and nine times out of ten I will choose the music and just hold an awareness of the lyrics, but not process them at all. 

Moving forward many years, up until I got my current job over in Penryn in October 2016, I worked up in Cambridgeshire, living in a caravan and coming home to Cornwall for a few days once every 2, 3 and sometimes 4 weeks. I had little awareness of what was going on in the outside world, even less awareness of, or interest in, Facebook.  

So, things that may have been obvious to many (Teresa included) passed me by. 

Scroll forward to Mon 25th June 2018, the week I was due to get my latest CT results and find out whether the cancer is stalled, progressing or shrinking. This was an incredibly emotional week, but my emotions were, as usual, buried away inside and whilst I was aware of them in a distant way, I couldn’t get access to them, leaving poor Teresa to go through hell on her own. 

On this particular Monday evening we were watching the television, and, as is often the case at the moment, an episode of Blacklist (Series 5, Episode 8). Those of you who know the episode or the version of the song (apparently it went around Facebook a few years ago) will be smiling and can write the rest of the plot, but for me what unfolded was a surprise. 

This is an episode where, at the end, two of the characters are badly injured and on their way to hospital. 

I was aware, in the background, of something that sounded like The Sound of Silence. Clearly a cover and not sounding “quite right”, the original being, of course, “right”. As the final scene unfolded, the song grew in intensity. The plot I couldn’t care less about, I knew one of the characters was due to die that season anyway and it wasn’t going to be the female lead, so, there were no surprises coming. I HATE surprises, even in TV plots, shallow and well telegraphed as they usually are. Yet that music and how it was integrated into that scene, even down to echoes of a Simon and Garfunkel Track called (7 O’clock News, Silent Night) where there are news extracts (typically bad news) being read over a simple version of Silent Night. 

That same juxtaposition could be seen in the final scene with Sound of Silence and it’s hard not to see the connections – however, that’s what my brain does, it looks for patterns, oh guess what, that’s the name and subject of another Simon and Garfunkel track, Patterns, I could go on for ever here, … 

Well, that music (Sound of Silence) mainlined into my emotions and hit me very hard (editing this a few months or so after writing it and I have tears running down my face), despite me not really listening to it. Yes, the time was right, waiting to find out how quickly cancer is killing you is most definitely a time of high emotion and loneliness, yet this version was competing with something I knew (as only an obsessive, ‘the first time is the ONLY time’, autistic can know) was right, it just drove straight over the original and knocked me out. 

Of course, I had to find out more, a quick google of “Blacklist Sound of Silence” revealed hundreds of hits of people asking who it was. 

It was, of course (as I now know) a version by Disturbed, a band whose usual output is much closer to Thrash Metal than Acoustic Folk! 

Teresa tells me it went around Facebook some years ago, I was oblivious, so most of you reading this would consider it to be old news. 

I have only written about it today because, as is often the case for me, I don’t know about anyone else, the emotional context in which I first experience a piece of music is the emotional experience I can ALWAYS access through that piece of music.  

Now, for many people that might be true, but for me it is usually the ONLY way I can access those emotions, without the piece of music they are locked away and I can only look at them through frosted glass but not experience them. 

So, for better and for worse, this version of Sound of Silence by Disturbed is forever locked to how I feel about living, and ultimately dying, with cancer. 

Of course, I bought the CD, duh! 

Of course, I have bookmarked multiple versions and interviews with the singer, David Draiman on YouTube, what else would you expect an obsessive autistic to do? 

It sounded good on the TV, Ok-ish on the phone, but was amazing on the audio system in my office, but then that is setup for audio excellence and delivers wonderfully. 

Teresa loved the piece of music too, even though it’s really not her genre, and she loved how that final scene had been put together and how well the visual cues used in the videos of the song were picked up and echoed in the TV production. It was still cheesy American schlock, but well done and I am grateful for it. The point being that for Teresa the music and the visual image are linked and the one connects immediately to the other; for me there is no connection at all, even listening to the music I have NO recall of the dramatic scene it accompanied whatsoever, other than in the vaguest of senses. 

And finally, to return to “Patterns”, we were watching a later episode of that same series Blacklist, (Series 5, Episode 19) also titled “Ian Garvey”, and the same motifs were used, but with a different song – House of the Rising Sun – but used the same way, as in a different arrangement to the original, a person dying, a hospital scene; either I said to Teresa that it “Bookended” (of course another Simon and Garfunkel link – Bookends), my brain had matched the beginning and end without me understanding what it was, just that it was. Of course Teresa understood that, I just “felt” it.

It is that ability to match patterns without needing to think or understand that makes me good at my job; it’s just the same for me as it is for you when you hear speech and it makes sense without you needing to think about it. 

And so, this blog has been bookended itself 🙂  

Of course this blog doesn’t reflect its original aim, which was to open up what I discussed at the LitFest talk to those who weren’t there, but that’s not a surprise to me, nor Teresa, nor to anyone who really knows me. As I said in that talk, when I start communicating I have no idea what will happen, I am a passenger, hopefully this wasn’t a car wreck and, from the outside at least, makes more sense to you than it did to me as I wrote and edited it. 

The Bean, Pendeen 19-Sep-2018 

Sheffield is a long way, pain is NOT character building and never forget poo – 01-Sep-2018

Finished the assessment (see Thursday)

Sat 01-Sep-2018  

Teresa is desperate to get the work in the annexe finished (we missed the summer ’17 holiday season and now summer ’18 so she wants to be sure we’re ready to fly in the new year) and as she’s mostly finished her stuff, it’s all waiting on me. So, I (she) decided that this weekend I would try and push to make progress, carefully managing my energy at the same time. 

I woke Teresa at 7:30am – normally at a weekend I would NOT be doing that, she needs the lie in, but mornings are my best time. 

Into the annexe we went and I cut a “notch” in the shelves either side of the window and knocked out a lot of plaster and mortar on the righthand side to get the new support post (for the blind) in place, screwed it to the existing timber on the plasterboard wall above the shelf, and it looks solid. I did the same on the other side, but only needed to remove the plaster. Both uprights required a notch taking out of the bottom to allow for the irregularities of Cornish walls and their rather random relationship to all things square and/or vertical! 

After that I was shattered so we stopped for a break and had lunch. 

Afternoon and time for another go. We checked whether the blind would fit the gap – not quite, needs ¼” taking off. So, angle grinder (with thin blade) to cut the metal trunking and a fine-tooth saw to cut the slats. Tried fitting and looked marginal, but I was shattered again so no more today. 

time for a late afternoon nap 

We had an early tea because Teresa was off to a performance at The Acorn in Penzance so we had a second portion of the Magnificent Moussaka that we had yesterday (Friday). 

Teresa headed off and by 7pm there were rumbles in the bottom department and oh yes diarrhoea is in the building; 20 minutes later there’s an even louder rumble and a severe Barney (see earlier blog for definition, because you don’t want me to explain it again, you really don’t) is in progress. Feel awful, like my insides have been hoovered out. Took an Imodium and lay very carefully in bed 

Sun 02-Sep-2018  

Well, nothing happening in the bottom department, probably because nothing in my digestive system left to come out, so not worrying. 

Again, I woke Teresa up at 7:30am. My whole shoulder area is very sore but not impossible and there’s no sharp pain. I feel awful but it’s worth a final push. So, in we go, put up the mounting brackets and tried the blind. Metal “just” ok, the blinds slats not. Decided to cut the wooden slats by ¼” either side to ensure it won’t catch going up and down. 

Bloody hard work as it needed gentle manual sawing and that is both hard on my shoulder and physically exhausting, so a lot of rests as I cut through and it was eventually done (taking about an hour for what is really a 10 minute job). After that we hung the blind – yeehaw, it’s up and working. Time for a long rest. 

Had lunch and then a quick trip into annexe to use mortar and “rubble” to fill the gaping hole I left clearing space for the righthand side upright, didn’t take long. Will need plastering to make good but no problem. 

Afternoon nap time! 

Agreed with Teresa to avoid the moussaka today in case that’s what triggered my digestive system upheaval yesterday. Really annoying as it was the best moussaka ever… 

Instead I had a sausage sandwich and some of Teresa’s lovely apple and blackberry crumble. Teresa skipped the main course and went straight for a VERY large bowl of crumble plus a humungous quantity of Birds custard. She spent the rest of the evening complaining that she felt ‘pogged, but she still had a big smile on her face :-). For me it was evaporated milk with the crumble. For both of us, our choices reflect memories and experiences from our childhoods. 

Bottom department still quiet, though I worry about that fruit. 

Mon 03-Sep-2018  

Well, a normal bottom visit to the loo, something which is often followed by explosions once the “bung” is released, so fingers crossed. 

To work in my office at home 

Tue 04-Sep-2018  

In the office in Penryn, very tired, probably the result of the weekend. 

Loaded the buggy using the new ramps myself when I got home as Teresa was out.

I didn’t have my afternoon nap when I got home, despite feeling incredibly tired. We are heading off to Sheffield early in the morning and I wanted to get as good a night’s sleep as I could. 

Not sure if I have explained why we were off to Sheffield, so apologies if you remember, I’m afraid I don’t. 

The purpose of the trip is for me to get a “Learning difficulties” assessment by an educational psychologist. In the old days this would have just been for Dyslexia, but nowadays (as we found out) it’s a much broader assessment. Because I am starting an MSc on Autism studies in November with Sheffield Hallam University, and had asked them to take my brain into account, they needed an “official diagnosis” and were willing to pay for it if I would go to Sheffield. So, having not seen Mum (who is over the Pennines in Doncaster, and in end stage Alzheimer’s) for years, I thought OK, two birds with one hand (Teresa tells me this should be ‘stone’, but I like my version, tomorrow it will be a different version, …). Overall it was a 400-mile journey each way! 

So with the journey looming, I managed to stay awake until 7:30pm and after that I did sort of sleep, but in the end it was just as broken a night as normal so I probably should have had the extra hour or so in the afternoon as well. 

Wed 05-Sep-2018  

I was up at 4:30am for a 6pm departure. Hmmm, it all took a bit longer than that and it was more like 6:15 when we left 

We had the usual stop at Cornwall Services for me to take my cancer drugs, but otherwise just a cold drink, so no delay. Of course, it’s not that we get the cancer drugs there, just that after breakfast and getting ready, 2 hours have passed by the time of Cornwall services and so a good time to take the drugs I have with me. But then you all knew that didn’t you? Probably just me that found the original sentence misleading? 

On to Taunton Dean services where I made a cup of tea from my Thermos and Teresa had a coffee from her thermos and I got to eat something – a roll from Smiths that I was sure I had enjoyed last time we were here, but this time it was rubbish, so maybe I had picked it up at Cornwall services last time, not sure. 

Onwards to Gloucester services, not sure what happened here, but Teresa likes it. 

By now we’ve had a lot of discussion about the possibility of going to Bromyard (https://www.bromyardfolkfestival.co.uk/) Folk Festival on the way home – see the folk festival blog for more (when it’s released). 

Still going, it’s a long old trip this.  At the M42 around Birmingham I knew we were heading for the M1 North and so decided that we wanted the M69 turning off the M6 and ignored the Satnav. Almost at the M69 and I saw the Satnav taking us off and wanting us to turn around. At the time we were in very busy and slow roadworks and I was close to panic, so I did what the satnav said, got a map up on my phone, and realised she wanted us to use the M42 North of the M6 and we should never have turned off onto the M6 in the first place. Why it was faster to go back through really heavy roadworks to the M42 and not just continue I don’t know, but we did, and things eased off. Surprisingly we avoided a row, mostly I think because Teresa went silent and didn’t try (very much) to help and that let me sort myself out. We make progress 🙂 

Stopped at the first services we reached on the M1 (Trowell) pretty rubbish but had a cup of tea/coffee and something to eat and then the final push to Doncaster to see my mum in the nursing home. Not seen her for a few years, back when the Alzheimer’s was very mild. She’s now immobile and whilst she appeared to recognise me as someone she knew, I’m pretty sure she didn’t know WHO I was. 

Anyway, we spent 20 minutes with her and then on to see (and stay) with my sister (also in Doncaster). Nice to see her, she works nights and left her dogs in the house with us. Apparently they  are quiet for her when she sleeps, but they weren’t for us and with one dog in the sitting room and two in her room (next to ours) they wound each other up for a lot of the night, indeed Teresa and I do quite a double act impersonation (ask us, next time you see us 😊 ) so, we did not have the best of nights 

Thu 06-Sep-2018  

The next morning, after a chat with my sister, it was off to Sheffield for the assessment, the journey was straightforward, albeit slow in places, and we were able to park with our University supplied permit.  

While Teresa checked out where we were supposed to go, I used the ramps to unload the lawnmower (an act that, in hindsight, may have contributed to my shoulder pain two days later). Although I had loaded it myself on Tuesday afternoon after getting home from the office without problem, this time it “grounded” as I was getting it out (and back in). I suspect because the slope of the outside ground in Sheffield increased the angle of the ramp a tad too much. I think an extra bit of ply on the floor of Angelique, just to raise the wheels for a bit longer, will do the job. 

We tried to find somewhere for coffee but despite “help” we never did (term hadn’t started so the whole place was a bit Marie Celeste) so just had water and waited.  

The assessment was as traumatic as I expected from my memory of the last Dyslexic assessment I had. The Psychologist was brilliant, but the very nature of the tests strain what I can manage. Still, at least they let Teresa sit in with me and she was able to make sure nothing was missed out or misconstrued. 

This time, the results were clearer as they seemed to be more willing and able to view overall diversity and not just the basics of things like spelling. It turns out that I am quite bright, have got good coping strategies and am good at solving problems logically (well what a surprise, I am a mathematician!) but that I have processing issues:  no surprises there either. All of which means I should get some help in the form of time and “understanding”, so an exhausting but worthwhile trip 

The journey home was tough. It was chucking it down with rain and as we had left around 1:15pm, we were never going to be home much before midnight if I didn’t need a sleep on the way! 

So, down the M1 we went, traffic awful, awful rain, so much dangerous driving, mainly by HGVs. We stuck to the inside lane at 40-50MPH and I was quite happy with that (these days in Angelique, 50 is my usual anyway!) 

we stopped at Tibshelf services – better than Trowell on the way up – for a food and drink break. For me a Cappuccino coffee with an extra shot. I don’t normally need coffee during the day but after our bad night and then the gruelling assessment, I knew I needed the “kick” 

Down the M42 and once we were south of the M6 it was stationary and crawling till we were going West on the M42 (underneath Birmingham) and on our way to the M5. 

The traffic had now eased and so did the weather as we dove down to Gloucester South. 

Bizarrely, Gloucester South Services have erected two disabled porta loos outside. We decided they might be for night-time use as these services are not 24 hour. When we went in we found half a dozen family loos and two disabled ones, both seemingly engaged, so I used a family room – since they have a habit of using the disabled even when it doesn’t have baby changing facilities and somewhere else does. 

After that I felt the need for a nap and since Gloucester is 3 hours free parking (most services are 2 hours) it was a good place. 

In the end I got an hour and a half of rest with some napping. It was then back in for a pie and another Cappuccino plus extra shot and yup, the same disabled loos were engaged again (i.e. both on my way in and on my way out – yes, of course I checked!) so maybe the porta loos outside were there for some bizarre reason that they had no notices about???? 

Anyway, onwards, knowing we weren’t going to get home before 1am now and that Cornwall Services closes at 11pm, we stopped at Exeter for a final loo and another strong coffee. They have changed the layout of Exeter services since we were last there and added a new layer on the side, but once you get past the extra layer, the rest is little different, especially in the loo department with one disabled that is just as scruffy as it always was! 

Trouble is, you have one hell of a walk through the new bit to reach the old bit where the loos are. More than I wanted but other than getting out the lawnmower, I had no choice other than a very slow walk. 

Final push and we got home around 1am, very tired, and I crashed out at 1:15am and that was that. 

Fri 07-Sep-2018  

Quick dash to physiotherapist at 8:30am (I hadn’t bothered to postpone as I hoped to be back sooner (idiot Bean, do the arithmetic as they say 🙂 ) 

Her verdict was that I have sufficient strength and mobility to be “functional” and so nothing more she can do, what’s left (the movement I can’t do and the pain) are “my problem” NOT said in a nasty way at all, just being realistic, I agreed and so that’s me done, almost 11 months on from the original accident. 

For the rest of the day I did absolutely NOTHING apart from repeated trips to the loo for the “usual” 🙁 needing Loperamide and Imodium instants before tea and before bedtime to just hold onto a little nutrition and fluid and sense of normality, because “exciting” poo IS the new normal, something that would have been distressing and worrying is now so “every day” (and it is every day and multiple times a day) that it’s hardly worth mentioning, is it? Obviously, I think it is 🙂  

Postscript 

Pain, I don’t go on about it, but the reality is that my shoulder is sore all the time, hurts often and is agony sometimes (a few days a month on average). 

My dodgy hip continues to hurt when it’s not been moved for a few minutes (no chance of fixing because I can’t have surgery without stopping the cancer drugs for 3 months) 

My coccyx is never pain free, sore usually, hurts often and agony too many times. I use extra padded cushions with a cut-out on the sofa, in my office (home and Penryn), in the car and on the mobility scooter and that reduces it to manageable in the sense I REALLY want to use pain killers but don’t because I have such a deep aversion to getting addicted – even Paracetamol which is not addictive, but if you take it all the time then what do you take if you need more? 

Yet there are still times with my shoulder and with my coccyx when pain killers are unavoidable, probably every week to 10 days for a day to 3 days at the time. 

Can you see any of this? Nope. Does it add to the fatigue? Yup, just as the diarrhoea does. Can you see when all three are bad? Nope. Who knows? Only Teresa – see my blog a couple of weeks ago when I ranted on about visibility and open communication! 

I go on about this stuff here because I am trying to help people see what normal really is for me, out and about I try not to show it and I have to remember that when I see any form of specialist I need to make sure they see my actual problems and not my masked ones, because otherwise they have no way of knowing. Frustrating isn’t it? Those who moan loudest get the most attention, those who” manage” get the least, even though they are often far worse off. 

Oh well, I could really start ranting all over again, but no point. We all (should) understand that problem, it is endemic in life. I just try to remember to moan and talk about my worst days not my best when being “assessed”, even though it really grates on me to do so. 

The Bean, Pendeen, 15-Sep-2018 

 

 

The price of pleasure is high – 25-Aug-2018

Teresa finishing our setup at Towersey

Sat 25-Aug-2018  

Okay, decision time: we will be leaving Towersey Folk Festival this evening: last night was freezing cold and torrential rain is forecasted for tomorrow. 

Normal-ish poo this morning, but then severe diarrhoea attacks this afternoon, three Imodium instants taken before it calmed down – see Towersey Blog. 

Left Towersey just before 10pm. 

Sun 26-Aug-2018  

Got to Gordano services and it was clear some sleep was needed (by me), so we did our usual: having found an isolated spot we put the front windscreen and window cover on to reduce the light for Teresa, and wrapped ourselves in duvets, pillows and cushions  

We slept from 12:15am to 6:30am. Quite a good sleep. 

Last time we were at these services I used the men’s loo and got rather distressed and Teresa and I went through a miserable time. This time I had a radar key and avoided that problem, phew that was a relief! 

As last time, we didn’t have coffee at Gordano but drove on down to Sedgemoor services, this time we went in together, but ate in the car – it was so much quieter there – no screaming kids that take over service stations, especially during the summer holidays. 

Yes, I was one of those parents too, but my children were NOT allowed to scream or run amok, … 

Stopped at Cornwall services for food and coffee, home around 1pm, pussycats pleased to see us. 

Later on, in the afternoon I helped Teresa unpack Angelique 

Mon 27-Aug-2018  

Oh dear, my “shoulder blade area” has gone, like it did a few weeks ago after helping #3 son collect some stuff from his room. Just as painful, hurts to even lean on my back while sitting, no chance of laying on my back so I have to risk sleeping on my side and hope those antibiotics have sorted the pain in my cheek. 

Loading and unloading the lawnmower “by hand” is increasingly difficult for me, so I decided to invest in some ramps so that it can be done single handed, albeit the ramps themselves are not light! 

Tue 28-Aug-2018  

Phew, those antibiotics seem to have done something, it’s not right but last night I could sleep on my side and hence side of my face and avoid my painful shoulder. Hope that means it was an infection and the anti-biotics have “nailed” it? 

My shoulder is still complaining, probably from the packing at Towersey and unpacking on Sunday afternoon. 

On holiday from work but still got some work done. 

Diarrhoea still in full flow, this evening it was all normal (not had that for ages), but followed 10 minutes later by “explosive”; it is exhausting. 

I saw this article on the BBC News Web Site, Bridesmaid spends 15 hours escaping wedding 

That is me: if I can manage to avoid staying away from home for even one night, I will; it’s one of the elements of festivals that I have to fight in order for us to go at all. I “can” treat Angelique as a bit of a home-from-home but everything around me isn’t home and so it’s still a problem. You will see in next week’s blog how I drove 400 miles there and 400 miles back for an intensive assessment and only stayed away for one night and if I could have done it with no nights I would have! 

Wed 29-Aug-2018  

Back at work but working from home since my shoulder is still complaining and driving would be dangerous. 

The ramps have arrived, unpacked but not tried them yet. They are heavy! Come as a pair and each one is manageable, but they are bulky. Oh well, needs must.  

Thu 30-Aug-2018  

At work 

Tried out the ramps and to get from house to outside they are brilliant; tested them against the van and it looks OK, but no point actual testing until I need to get the lawnmower into the van 

Fri 31-Aug-2018  

At work in the office at home. Normal poo at 8:30, less so at 9:30 and here we go again as I write …. 

Postscript 

As usual, whether it’s a good festival or not, my body takes a hammering and it’s a week before I am truly over it. It doesn’t stop us going of course, but there is a price than I (we) never had to pay even 12 months ago 🙁 . Do I regret the price, well it depends on your perspective, compared to what? Being dead – hell yes! Otherwise, ….

The Bean, Pendeen, 10-Sep-2018 

 

 

Ranting and Poo – 18-Aug-2018

 

14-Apr-2009, Jane, back in the days when she did “tribble”, when I did “man”, we lived in Cambridgeshire and cancer wasn’t part of my world 🙂  

Sat 18-Aug-2018  

Ok, time for a bit of a rant. I’m tired of seeing how the fear of cancer stops people dealing with it and the following are the sorts of ways I’ve encountered fear getting in the way: 

  • I have cancer and want to pretend it’s not happening to me. My family desperately want to talk to me but can’t because I’ve built a brick wall around me. 
  • Someone in my family has it, but I’m in denial and hope it will all just go away. 
  • I have it and want to talk, but my family and/or friends don’t know what to say and/or are too frightened to talk about it. 
  • …. 

Cancer can be absolutely fucking awful both for the person with it and their friends and family. Even when you are “cured” there is always the fear (often likelihood) that it will come back. When you are designated incurable, there is the “what do I do with my life now, how do I die, …” 

The fuse for this particular rant was this cancer article on the BBC News web site, not because of what it said because it was a positive article, but because it doesn’t seem to reflect the world I encounter. The actual trigger was a number of Facebook posts by different people on different pages about different people.

Now I do realise that the chances of anybody really engaging with what I am about to say are slim to none, outside of those people I’d already trust to not be afraid to engage with it. I’m not an idiot. I may be autistic, but I’ve observed a lot of people over the years and I know that the majority prefer the blinkered approach. However, I don’t think that’s healthy, no matter who is wearing the blinkers. I wish I didn’t seem to be in the minority because I don’t think I really am, it’s just our society discourages taking off the blinkers for fear of how others will react. If “others” react well, then maybe there would be less fear? 

Anyway, rant for today follows – I posted a version on Facebook with the expected minimal reaction and non-existent sharing 🙂  

I understand the need to leave a part of you for your loved ones to remember, of that feeling of a race against time, it is part of facing up to the reality of our illness. 

This is not a message to everyone, but I am sorry to say it’s a message to more people than I wish it was 🙁 . Having so few friends on Facebook (it’s a concept I struggle with) this message will not reach all the people I wish it could, unless you spread it far and wide for me. 

When I see comments on Facebook to people with Cancer of the form “be brave and it will be alright”, “you are looking so well”, “if you feel down, well you need some therapy”, …, I want to scream at them “no it fucking well won’t be OK, no I do not feel alright. 

If being brave, strong, having therapy or not looking ill, was the cure for cancer we wouldn’t be in this horrible place. 

I do understand how hard it is to know what to say, but, telling us that if we die it’s our fault for not being brave enough or strong enough or not fighting hard enough or just not having the right mental attitude, well it really doesn’t help. If you think that’s not what you are saying, try imagining being on the other end. 

We are brave, we are tough, and we do fight, we are also frightened and exhausted and want to give in. Sometimes we win and sometimes we lose, but that’s ultimately down to luck, does the cancer turn right instead of left, does it respond to treatment, was it caught in time, … 

Yes, I want you to care, yes, I need your support, but most of all I need to be able to be me and be honest, not hide how I feel or not show what this disease is doing to me, accepting all the possible outcomes and trying to live the best life I can for what is left of my life. 

It’s not my job to make you feel better, even though that’s what I find myself trying to do because it doesn’t feel to me that you could cope with how sick and terrified I actually feel at times! 

In my blog I try to be as honest as I can and I know for some that is uncomfortable. But meeting you on the street, online, at work, …, you ask how I am. How do I tell you that my day is awful, the side effects of the drugs and/or the cancer itself are so bad that I just want it all to end. 

How strong and brave can you be so that I can say that and not have to worry about how well you will cope emotionally or that will you say something anodyne because you don’t know what to say? Can I just talk and you not only listen but engage with me, have a laugh with me about my poo tales, … 

Written with tears streaming down my face, but if you don’t ask you’ll never know why they are. 

Bean. 

Nobody re-posted, nobody asked about the tears, the only comments were from people I already trust will cope with me saying how I really feel, I rest my case 🙂 but I really mean 🙁 

I had already posted that but today, as we drove to Truro, Teresa happened to ask me how I wanted her to go about notifying my children of what was happening if I looked close to death. A point highlighted by my daughter starting work in London, five hours drive away, and the fact that my son is already in Bristol and doesn’t drive, so easily five hours away too. 

I said, just tell them what the doctors tell you and let them decide whether they want to risk a false alarm or false optimism (i.e. the doctors think all is fine, but I suddenly go). 

This conversation moved on to my funeral and I said that on reflection, since I won’t be there, I really don’t care what happens, it is for you not for me. 

Of course, we both cried, it’s not a fun subject, BUT we had the conversation without fear that either of us wanted to avoid it. It’s not the first such conversation (that was almost a year ago, on a bed in casualty, when we first found out) and it won’t be the last.  

In regards to my children (not hers), what is Teresa to do? Have secret conversations behind my back? What an awful load to put on her.

How can I place all sorts of restrictions on what my wife and children can feel or say to me. Of course I don’t but people do 🙁  

Dying is part of living whenever and however it happens, it’s crap, of course, but it is inevitable, it’s just I’ve a better idea of how and when than many, but the reality for any of us is that we might not survive today, or we could live to 100, you just don’t really know. That accident where I got a diagnosis could just have easily killed me.

Anyway, despite the tears we got to Truro safe. I whizzed around on the lawnmower, we visited lots of shops. I got some new waterproofs, Man-size jacket and so boring in black, and women-size trousers (in the sale and fitted great), also in black so they matched. For goodness sake men DEMAND colour please, because in the heavy-duty walking stakes the female clothes have colour but they don’t do them for “larger” girls (size 24 in my case). Not that I actually do walking anymore but those clothes are well designed to deal with when I do get exposed to the elements. 

Later on, I picked up some chocolates for Teresa at Thornton’s, much to her surprise. It was a spur of the moment thing. We were going along happily but then I suddenly went into reverse, having already passed the Thornton’s shop, took her a bit to work out what was going on! 

Later on, at Sainsburys, I got her some flowers too. 

Well, she deserved both and even my unaware autistic brain manages to remember sometimes and when it does I have to act NOW because otherwise that thought would evaporate in a few seconds and yet another opportunity would be lost! 

Sun 19-Aug-2018  

Another mini-rant 🙂 . People often get confused by the word ‘fatigue’ and think it’s just a different word for being tired, and we all understand that. 

Not so.  I can talk about drug induced fatigue because I get it. They are often cancer drugs because they are so powerful, are designed to try to kill or slow down the cancer without killing the patient and as a result they are always on the edge of killing us. So, the fatigue that comes with them is not about being tired, although that is part of it, it is an almost total paralysis of the mind and body. 

Not all the time (for me) but often enough that it can take me an hour to get from lying down to sitting up and another hour to get from sitting up to actually getting out of bed. That’s after TEN hours in bed. Then I need a nap in the afternoon. 

Yet if you were to look at me, I “look so well”, you can’t see how much effort it takes for me to function as “normal” as I can. Teresa does, but she’s the only one.

I can’t say how it is for those with “Chronic Fatigue Syndrome” (ME), but I suspect it can be much the same, which is why even these days it’s often viewed as malingering, because it is so invisible and hard to imagine. 

You have to fight through it and yes some people don’t want to or can’t, others do, but it’s not easy. 

Some people on Chemo and drugs like the ones I take, don’t get affected very much, if at all, by fatigue; neither their experience nor mine is absolute, drug side effects are individual and can change over time. So, just because Joe down the road does marathons while taking Paz, doesn’t mean I have the energy to cross the road to the shops today and I don’t: this morning I loaded two crates with camping stuff, the job took me all of ten minutes, but it wiped me out for the rest of the day! 

Well, that’s Sundays rant over 🙂 

Mon 20-Aug-2018  

Anybody feel like a rant today? No? Oh well! 

It’s Towersey Folk Festival this (bank holiday) weekend and we are starting to organise our clothes packing. 

Have you noticed that I’ve “eased” off on the poo stories? Well, it’s not because it’s fine but because some find it boring. Trust me it’s not, it can be quite exciting (in an odd sort of way), there I am busy at work on my computer, I feel a bit of wind (aka killer farts), no problem, better out than in, nope not wind, quick dash up the stairs, made it in time (just), nope not wind, quick wash of knickers and fresh ones and all is fine. 

When I need the loo, I need it NOW and sometimes I don’t know I need it until now is NOW, sometimes, now is too late! 

I feel it is time for some more detailed “poo” debate descriptions: 

  • Constipation – there are probably many degrees of this but for me there’s only one, either I am or I am not, it’s always bad if I am 
  • Normal – a very rare event and I think, for me, one that now only occurs as I pass from constipation to diarrhoea 🙂  
  • Standard diarrhoea – loose but uneventful, only really notice when I “go”. This is my normal. 
  • Go ‘now’ but then nothing happens, in some ways the most dangerous because it can fool you, ever heard of “cry wolf”? 
  • Just a bit of wind – oops fresh nickers time, happens more often than I like. 
  • Out of the blue, pop to the loo for a wee and things start happening as your bottom hits the seat, usually explosively.  
  • Explosive – you know about this one, but it is a least poo like 
  • Barney – a couple of months ago I spotted our cat Barney, who had a bit of an upset stomach, using his litter tray, and what came out looked like water. This is a worrying one (for me, less so Barney as it was a one-off for him – probably stolen some food that didn’t agree with him 🙂 ) because you’d expect excess water to travel via the kidneys and hence “front bottom”. If it’s so bad the gut has no time to absorb the water then it’s not going through the kidneys and the kidneys need lots of fluid to keep them working which, when you have renal cancer and potential limited renal function, is rather important! 

I do, of course, refer to all of these states but what I write about and day to day reality are a long way apart, the real world is far more colourful. Just ask Teresa how often she gets reports and she doesn’t get all of them, poo is a significant part of my life 🙂  

Going back to the subject of fatigue, today was the first day I tried a deliberate afternoon nap to see whether I could get more energy into the end of my day. I didn’t sleep but I had an hour of zoning out, time will tell, … 

Last night I struggled with the side of my face hurting as I lay on it (the only way I can sleep), hope it goes away. 

Also, diarrhoea is building, that means it’s started and showing no signs of wanting to stop! 

It’s not been my best day, but the nap did help, a bit, I think.

Tue 21-Aug-2018  

Side of face pain is so bad that at 2am I had to get out my back support, flip to other end of the sofa and sleep on my back, trying to ignore the pain in my coccyx. 

This morning I rang the cancer nurses as this could be the cancer moving into my jaw bone. She recommended visiting the GP to see if there is an infection. It does feel like that is the problem, but no raised temperature, so, I worry, we worry, … 

Also, diarrhoea is still bad 

Wed 22-Aug-2018  

After another awful night, Teresa made an 8am call to the surgery and got a doctor’s appointment for 8:30, so quick dash and off I go. His verdict was, no sign of an infection but a week’s worth of “broad spectrum” anti-biotics “just in case”. Whilst one has to worry about unnecessary prescription of antibiotics, I have a compromised immune system and infection can very quickly get out of control, so “better safe than sorry”. He also had a good prod about and couldn’t detect any suspicious mass lurking in my jaw or enlarged lymph nodes in my neck. Which is good. I think… 

This afternoon we packed up the van for Towersey. It’s a fairly quick job as Teresa does much of the work apart, from the spacial engineering which I contribute 🙂  

Still, exhausted. 

Diarrhoea is building, REALLY kicked in, I suspect the anti-biotics are not helping. Taking plenty of Loperamide (Imodium) hope it kicks in well enough for the festival, got plenty of stocks with me, including “instants” as they do act faster and when out in public with limited toilet access, reassuring! 

Thu 23-Aug-2018  

Off we go, for a report see the festival blog when published. 

Fri 24-Aug-2018  

At Towersey, no loo activity at all, well, that’s a bit better than diarrhoea, but not much. 

The festival, well, we wanted to turn around and leave when we arrived yesterday, no reason to change that feeling so far. 

Postscript 

The fear of cancer (and I suspect other terminal illnesses) can screw up people’s lives, which is one of the reasons why I blog about it so openly, to try to lift the mystery and show that you can openly live a life with these awful diseases. Even so, we still see a lot of people’s lives blighted not by the cancer (which obviously it does) but by inability/unwillingness to talk. 

I met with a friend from Cambridge at Towersey and it was so good to be able to talk freely about poo issues (of which I had a lot at the festival) without embarrassment for either of us. Having a “poo buddy” (as Teresa puts it) who just understands is great. Not having one makes it all just makes things more scary, instead of just “how I now feel is just the new normal”. 

As for “anything could be cancer growth”, that is terrifying and trying to live a “normal” life when the next scan is not till the end of September and they don’t even scan the jaw anyway, well it’s hard to be “chilled”. 

I use the word “ranting” because I know that’s what it seems like, however I am very serious about the content of those “rants” and sometimes I fear we use the term “rant” so we don’t have to look hard at what is being said and ask ourselves if it applies to us, I know I do, do you?

UPDATE:

This blog was completed this morning and scheduled to post at 5:30pm,  do you remember the BBC news article that I said triggered the rant that opened this Blog?

I have just seen this article on the BBC news web site. Days, there is nothing I can say.

The Bean, Pendeen03Sep-2018