Letter from the North

Poo, of course and Scanxiety is building 24-Nov-2018

Burlington is the only cat that reliably sits on my lap 🙂 

Sat 24-Nov-2018   

An awful night, I didn’t start sleeping till well gone 1am and it was rubbish sleep after that. Woke around 8am but it took me a good hour to get to the point of being able to manage breakfast and almost humanity. Apart from anything else that means I can’t eat again till just before lunch and miss out my mid mornings, that plus it’s a non-Ondansetron day means that nausea will be worse anyway. Oh well, it was never not going to be a crap weekend waiting for that scan date. 

I have completed the last double blog and so this should go out on 2-Dec-2018, did I think I’d make it here a year ago? I had my doubts, do I think I will make it another year, well, that depends on this bloody scan that isn’t happening, but I have my doubts and that is hard to bear. 

Still, poo is under control, well, for the moment (and it is moment), I would never be so rash as to say it is under control for as long as minutes 🙂 . 

I say “under control”, that’s never that close to the truth, we had the chicken and leak minus the potato plus puff pastry as a pie yesterday and today. Today I took a precautionary Loperamide, it leaves me feeling uncomfortable but I get to actually digest my food and don’t lose so much fluid! You can hear the gurgling from my digestive system across the room! 

As Teresa says “your gut must be a mess”, on its good days yes, on the bad it’s a right PAIN! 

Sun 25-Nov-2018   

Another rubbish night, dreams of not being able to do things I really wanted to do, unfortunately with Teresa as part of the equation. 

A difficult subject to even raise, but there’s no denying that it is a problem for us at the moment. 

The last of the double blogs is released, phew that makes me all caught up. Not waiting for Teresa to edit saves a lot of time at the price of less readability, oh well, in this brave new world where I assert my right to be me more strongly, maybe that’s no bad thing? Again, that difficult subject, …, I fear there will be a lot of difficulty in the blog this week 🙁  

On the good side I have made good progress yesterday and this morning on my job work, albeit at the price of achieving anything else this weekend, like fun 🙁 , still I lost so much time again last week, that I had to try and make it up, I just cannot keep taking time off sick. 

I often comment on poo incidents that result in needing a clean pair of knickers, the result of things not staying where they are wanted till you make it to the loo. One of the reasons I write about it because it DOES happen and not just to me, as a society we are far too squeamish. 

Saw this on the BBC News web site: The friends who giggled their way to an incontinence business. Loved the article and their intent, it’s a problem that does particularly affect women, most often after childbirth – a really brutal process for the body based on my observations of four births, especially two first-borns. 

We have got to stop being so namby-pamby about ordinary body stuff, whether it’s pee or poo, dying or whatever, it’s part of our shared experience, so bloody well share it rather than allow it to sit in the shadows causing such worry and embarrassment for some. 

Well, thanks to one friend we had a brilliant exchange about poo on the Facebook posting of yesterday’s double blog. But a shame it was just us two 🙁  

Mon 26-Nov-2018   

I am not a great one for “stats”, I consider a good day for my blog is that someone looked at it, there are many days when no one does 🙂 . Yesterday seemed to go mad (for me) and some thirty odd people looked, that’s a “record”. 

The title of the blog was, for me, purely descriptive, it never occurred to me that it could be or was anything else. I gather that putting in the phrase “dying is looming” may have encouraged some to wonder what that meant. I am sorry if you thought it meant I was on the verge. I may well be, we will know better after the CT scan (whenever that takes place). 

However, the blog was not misleading, it was written in a week when dying was (still is today) very close to my thinking, in particular how to and what I would do to let it takes it course sooner rather than later. 

There are those who have cancer that would view my pessimism as being weak, that I’m not “fighting” this cancer. You should all know my view on the word “fighting”, cancer isn’t an adversary you can beat, it’s only one you can try to survive. 

In these blogs I try to be true to what is happening and dying IS dominant in my thoughts, not only that I will, but the question as to whether my quality of life is improved by trying to put off that day using drugs and other treatments. 

Am I there, I don’t know, but I feel closer to that point than I have since diagnosis. Does that make me weak, I don’t think so, facing death is a damn sight harder to do than hiding from it and hoping it will go away. 

I know that any decision I make now, or down the line, affects Teresa and my children and I have to try and take them into account, but in the end, I am the one that has to live (up to) my death and I have to make the decisions that are right for me. 

The drugs we take (either in chemotherapy for treatable cancers) or in “slowing down” for the incurable ones like mine are awful, the point comes for anyone where the treatment is worse than the disease and dying. Am I there yet, NO, not in terms of treatment, I can cope with that, but am I in terms of the life I want to live in the time I have left, maybe, …, being miserable is no way to live, or die. 

You can always if, like my daughter, you want to understand more about what I am trying to write about just ask me, she did and we had a long chat. She doesn’t feel any better (as far as I know) but she understands better where I am and what I am thinking. 

I don’t have a problem talking about this and I know my writing is not particularly eloquent, indeed it can be mystifying at times as I have such a poor grasp of how to make language communicate what I want to say and not mislead or confuse people. 

If in doubt, ask, privately is fine, I am not hard to find even if I am rarely out and about 🙂  

 

And so, to work, I worked really hard over the weekend to make progress on my software rewrite that I have been fighting for the last few months. I now have it to the point where it works enough for me to see what the problems I have to fix are – I know that means nothing, but being frustrated you are making no progress is tough enough when all else is going well in your life, mine isn’t! 

Tue 27-Nov-2018   

At work in Penryn, made great progress, really pleased with work, I now have audio again after months of struggle. 

Nothing in the poo department till mid-afternoon when all seemed well, almost normal, then come the evening, sore “tummy” (not sure it is the tummy but easier to say than digestive system) and then two loads of diarreah and then Loperamide to stop it. 

Wed 28-Nov-2018   

No poo, no surprise, BUT massive “tummy” pain with nothing happening, I will have to mention this to the oncologists when we go there in case this is a new phase in the cancer or just one more of those fun side effects. But it is mega worrying on top of the lung question! 

 

Then the usual couple of explosions during the afternoon 

Teresa made a mincemeat (good quality from our local butcher), leak and potato dish. I was worried about the leaks and she was cautious, there was a lot of meat in there. Nothing happened post eating, so maybe, … 

Thu 29-Nov-2018   

STOP THE PRESS 

A normal poo! Solid, brown (not the horrible yellow I get with diarreah), I cannot remember the last time. I know it’s a rarity, but to feel “normal” just for a moment (in the poo department) is more important than you’d think! 

We wonder if, in part, this is down to the dominance of red meat in my tea last night, it does (I gather) have a tendency in that (constipatory) direction. 

Hmmm, already I have to cut out virtually all fruit and veg, I am NOT going to become a red meat eater! I am fine with white meat and that was sort of Ok though I miss “roughage” my body didn’t need any more “stimulus” than it already had. 

Oh well, no kicking gift horses in mouths, a good poo is a good poo no matter the cause or cost! 

God, how sad is that, eulogising over poo, I know you think I am obsessed, but it does rather dominate my life 🙂 

However, what do I see on the BBC news web site: 

How long does it take to poo Lego out if a child eats it? Clearly, I’m not the only one who studies it, though in my case I think the “transit” times is more likely to be around 30 minutes most of the time! 

Fri 30-Nov-2018   

It is time, I need to sort out my temporary office. A year ago, this room was full of building material and I suddenly (thanks Sprinter man) needed a place to work from home. So, a couple of guys from work (the IT Manager and the HR Manager!) came over here from Penryn with a van and, basically, the contents of my desk from work, computer, desk, chair, the lot! They moved the building materials around so there was (just) room for me to fit in here and I was able to work from home and have been doing so in this cramped space ever since. I have added a lot more equipment and it has got more and more compact and bijou (well, to be fair, a cramped tip). 

I need to sort a lot of stuff out in the sitting room and shed space (see next week) and so I need to reorganise this space. 

I am going to take next week off work as, even pacing the physical effort, the fatigue from physical work shuts my brain down and I can’t think, so, it’s going to be an exhausting week but, hopefully, a lot more organised in here and in the sitting room. 

Poo, continues good, the red meat diet is certainly effective, though it’s not one I am going to continue with, but the brief respite from poo wars is welcome. 

Postscript 

We did eventually get a scan date and got blood tests booked a good week in advance of clinic, so now it’s countdown to scan (I always feel rough for a few days after) and then clinic, hopefully with scan results and THEN we know what we know. 

Scanxiety is always tough, when you know they suspect growth and have just waited for three months to see if it does, the anxiety assumes a whole ‘nother dimension! 

p.p.s 

This post didn’t make it yesterday, but since the computer was shutdown during rebuild of my office (more on that next week), I reckon Monday morning is not bad? 

The Bean, Pendeen, 02Dec-2018 

 

 

2 Comments

  • Kate Mole

    Dear Bean,
    I haven’t commented on your blogs for a while because I’ve been in Australia seeing our son, but I have read the posts with interest and with sympathy. As usual: Well done for talking about it all and bringing it into the open.
    While I was away, yet another friend was diagnosed with cancer, a bad sort too, and on the basis that the worst thing we can do is saying nothing, I opened a correspondence with her. This went well on both sides. So it goes to show that discussion, though difficult, is the right thing to do……
    I hope you don’t have to wait too long for your scan and results. Waiting, in my opinion, is almost the worst bit.
    All the best to you and Teresa.
    Love,
    Kate.

    • Bean

      Thank you so much Kate and nice to hear from you, these blogs are all about showing that being open is OK and can be very helpful. Good for you opening up communication.

      Yes, waiting is tough, especially when you know that they think they saw something 3 months and are just waiting for it to either disappear or have grown big enough to be sure it’s nasty!

      All the best

      Bean (and always Teresa)

  • Write a Comment

    Your e-mail address will not be published. Required fields are marked *

    This site uses Akismet to reduce spam. Learn how your comment data is processed.