Letter from the North

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 

 

 

2 Comments

  • Kate Mole

    Dear Bean,
    I am sorry to have missed most of this until now. I have thought and thought about the matter of why people try to ‘ignore’ cancer and cancer patients (or why some people do), and I’ve come to the conclusion that it is mostly Fear. Fear of the disease itself, fear of the mere word ‘cancer’, and fear of the unknown (is it going to be all right in the end or not? And if it isn’t going to be all right in the end, what then?). This attitude is fairly widespread, though becoming less so (as cancer becomes more common, I suppose). And I think (not sure) but I THINK it may be diminishing – there are MORE people who ARE prepared to talk about it. In the future, if things keep on as they are, then even more people will be obliged to talk about it as it becomes a part of everyone’s life…. I am sorry that you are upset about it – I know a bit about how upsetting it is. And I hope you’re having one of your better days today. Love, Kate.

    • Bean

      Thank you Kate. I understand it’s all about fear, fear of the cancer itself, fear of not knowing what to say, fear of death…I am trying to communicate that it is possible to get past fear, but you have to want to. I’m not good at communication, at least in a socially acceptable way so I know I appear to “rant”. I’m not criticising people, I’m trying to say that if you actually care then trying and failing to talk is much nicer than doing nothing, practice makes perfect :-).

      As for me, I’m not really upset that people struggle as such, though I am, of course, pretty pissed off at the disease, the treatment and dying 🙂 It just seems that it seems to me that it might help to understand what it’s like for someone like me if I use Big Broad brushstrokes rather than subtle, easy to misunderstand language.

      I am a qualified Cruse Bereavement Volunteer (though I no longer volunteer for them) so I do understand how difficult the subject of death and dying is, but I also know how important talking about it is and the harm caused when people can’t or won’t. So, to me, it’s better to talk before death than after, especially for the person who is dying!

      Bean

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