Letter from the North

The actual results are in, poo continues – 29-Sep-2018

No pictures, no cats, so probably will even notice this float past on Facebook 🙂 

Sat 29-Sep-2018   

I intended to do some work on the annexe today, having decided that was more important than me getting a morning out in Falmouth, but first we needed stuff from Sainsburys and that can be a full morning’s job. I let Teresa sleep in till 8:30am and then over tea/coffee we got into discussing (in that way that is stressful for both of us) and we ended up being late getting out. 

Shopping was fine but I used their electric buggy – it does help me be able to wiz around and not burn up limited energy reserves, even though I do always feel a fraud … 

We got back home around 11:45 a.m., had lunch followed by a nap. 

Not sure what I did after the nap? 

We discussed  changing our evenings as having a nap has helped my alert stages, from “up” to 4.00 pm and then brick wall and zombie till bed at 8.00 pm, to “up” to 1.00 pm, nap till 3.00 pm or even 4.00 pm, then active till 9.00 pm. 

We agreed that tea (during the week certainly) would be 6:30 to 7.00 pm, right now that means Strictly Take 2 🙂 and 7pm to 9pm (ish) Teresa does reading/writing and I do these blogs, study for the autism course, work for Penryn or just faffing around. 

Sun 30-Sep-2018   

We didn’t do the annexe today as moving Teresa’s desk from her study to her (our) bedroom was more urgent. It needed doing so that she can have her office fully clear while she decorates it.  

Not a trivial job, tiring because it was quite physical. I had a rest downstairs for a while then we needed to run a new Ethernet cable from my old office downstairs. There was already a hole in the floor (to take the cable through to Teresa’s study) but it already had one cable in it so was tight. Still, a long screwdriver with string taped to it poked down through floorboard and ceiling of the room below got the string down. The new cable was taped on to the string and then pulled up and eased (wiggled 🙂 ) through to the bedroom and an Ethernet connector used to join it to the existing cable from her PC – and the job was done. 

Me, I was wiped out. We had lunch and I had a long nap 

Later, I did get some work-work done and cracked a work problem (at least it looks like I had, more on that later) up until tea time and then Strictly results show, … 

Diarrhoea seems to have eased off 

Mon 01-Oct-2018   

We started the new evening regime today and it seems to be working 

All still well in the bottom department, what’s going on? 

Tue 02-Oct-2018   

Went into Penryn to the office and – ok, the drought is over and the poo flood returns, first time needed to travel quickly to the loo in the office but no accidents!!! 

Looks like I hadn’t quite solved my technical problem as well as I could, but I know what I need to look at, so hopeful, … 

Home and nap, 

Bit of faffing, Strictly Takes Two and then our separate ways, which finds me typing this week’s blog up to this point. 

Wed 03-Oct-2018   

Didn’t settle till gone 11.00 pm last night and up around 6.00 am 

Diarrhoea was missing this morning, but by mid-morning, oh yes it was back, and again this evening, so that’s two Loperamide’s. 

One of the side effects of the current anti-nausea (metoclopramide) is diarrhoea; I thought for a while it wasn’t, but it is! Oh well, after this weekend I can go back to Ondansetron (my 10-day break will be over) and see how things go. 

Had a good morning’s work and a decent nap this afternoon but then I got in half a dozen bags of logs for the wood burner – which we’ve started to light once the sun goes down. That was Ok (at the time) though I then had to clear the kitchen drain outside of leaves and the first movement of my right arm had me screaming in pain (a muffled scream, but not silent). I finished that job one-handed. 

Lost energy much earlier this evening, feel the need for bed now at 8.00 pm but I think that’s the physical effort kicking in? 

Got my application for a GWR Mobility Scooter permit sent off, more complicated because you need a “passport” photo of your scooter. Just how do you get your scooter in one of those photo booths, that’s what I’d like to know. Still got it sorted and filled in the paperwork and crossed fingers I can take my electric buggy on the sleeper when I go up for my autism course for three days in London next month. 

Thu 04-Oct-2018   

Just spoken to the Cancer nurse and my results are now back. Basically good, but couple warnings: 

  1. Jaw pain is from a wisdom tooth that is horizontal (i.e. not cancer). If not causing a problem, leave alone as treating it requires coming off the drugs for a while. 
  2. Raised Haemoglobin has been referred to a Haematology consultant, chances are he will just call me in and drain off a pint of blood to reduce it! But not a worry at the moment.  
  3. There are some new spots on one of the lungs. I think that was the Top RHS (near all the accident damage), I’ve not got the actual report yet so can’t double check my notes. Probably the result of an infection but could be cancer. If it is then it probably means a change of drugs to 2nd line which I’d rather not! Will review at next scan. In the meantime, get the GP to do a Sputum test to see if it tells us anything 
  4. The blood tests were late because the lab changed policy and Biochemistry tests from GPs can now take up to 7 days not 24hrs! So just get them done earlier. 
  5. The Lymph node tumours are in the main stable and in some cases shrunk so, if the lung problem is an infection, it’s excellent news, otherwise, well, one step at the time! 

Bean 

Fri 05-Oct-2018   

It’s a week later (doing the first edit on the blog) and I have no idea what should be here, though it was the day Teresa deserted me and set off for her singing course at Halsway Manor. 

Just in case you think I resented her going, I didn’t, I encouraged her to go even when she was looking to me to give her an excuse not to! 

Postscript 

A lot of people hear the results above and the bit they see is “tumours shrunk or the same”. The bit about something possible on the lung that may be something benign they, without exception, read the “benign” possibility, whereas I see the “cancer” possibility. I know that if it is cancer, then what was barely visible now, in 3 months could be dangerously growing and spreading and everything will get very serious very quickly. So, I need to prepare myself (and Teresa) for the worst, whilst obviously hoping for the best. Except even the best is not good, infections are hard to fight off with a compromised immune system, so even if that is all it is, it may take a lot of time and effort to clear it up and stop it getting worse and weakening me allowing the cancer elsewhere to wake up. 

Is it really good news? I’ll let you know in three months’ time. 

Welcome to my world, I can’t afford to be optimistic, the fight against this cancer is too hard to take your eye of the ball and let it gain even the smallest of victories! 

The Bean, Pendeen, 26-Oct-2018 

 

 

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