Letter from the North

Wood, a trip to London and yes, more poo 27-Oct-2018 and 03-Nov-2018

Another double release, albeit a few days early, I am trying to catch up!

Sat 27- Oct -2018   

Woke up feeling sick, yesterday evening I had felt very bloated took I windsettlers (sort of gripe water for adults 🙂 ) to try and help and it did somewhat. 

However, there was a major barney (aka diarrhea like water) at 2am and that was probably what was “brewing”. 

We had a wood delivery (for the wood burner), I helped stack it as much as I could and paying the price now 

The 2nd half of my Xmas present (from the family) arrived, I had to order it as it was rather specific to me, but I will maintain the surprise by not saying till Christmas 🙂 . But thank you (in advance) Tom, Kat and Teresa. 

Hailstones this morning and feeling very wintery. 

trying new eating schedule of  

  • Small breakfast 
  • Small mid mornings 
  • Small lunch 
  • Small mid afternoons 
  • Small tea 

To see if I can get past the bloated feeling I get in the evenings and the constant hunger during the day. 

Sun 28- Oct -2018   

Got some proper work done, so far, new eating regime seems that it could be working 

Mon 29-Oct-2018   

Got in a load of logs for the wood burner, was as careful as I could be on the Right shoulder though I suspect the back and left one will come out in sympathy. 

This picture is of aforesaid wood stacks inside the house after the fire was lit, for some reason that escapes me, the cats rather like it 🙂  

It wasn’t much work and I felt full of energy before I started, that energy was soon all gone, but hopefully will pick up after “mid mornings” 🙂 

Just a word on fatigue, up until a year ago, indeed for virtually all of my life, 8hrs of sleep is the max I have ever had, 6hrs would be common and I could function on far less. 

Now? 

I usually sleep from 9pm (10pm at the latest, 8pm just as common) until 7am. Now “until” is a misnomer because it may take me up to 1hr to come around sufficiently to sit up and never less than 15 mins, usually about half an hour. 

Then in the afternoon I sleep between 1pm and 3pm at the earliest and it can easily be 4pm before I have come around enough to sit up. 

I don’t sleep continuously but usually my awake moments are minutes. 

So, I would say I sleep, on average 12 hours a day and I have two (approx.) 6hr periods when I am awake and for the last 2-3 hours, I am getting increasingly tired. 

Tired means it’s getting harder and harder to think clearly. 

Since I need to do 37.5 hours a week clear thinking for work, just exactly what do you imagine I achieve in the rest of my awake time after eating, washing, cooking, having a life? 

It’s rare I manage 7.5 hours paid for work in a day and so have to make it up during the weekend. 

It is NOT easy, I am working harder now (because the effort needed to achieve the same quality of work is greater) than I have in all of my life so far.  

When you think about “for better or worse”, Teresa certainly got the “worse” end of that deal! 

Tue 30-Oct-2018   

Ok, blood test done, results not for a while. 

The test for why high haemoglobin test was for Erythropoietin, also known as EPO (also used as performance enhancing drug!) it is the chemical that triggers the bone marrow to produce new red blood cells and is released by, yes you got it, the Kidneys! 

It is normally released in excess as a reaction to low oxygen levels in the blood to compensate by adding more red blood cells.  

The more interesting thing is that in Renal cancer in can be decreased, however the genetic “defect” that can cause the Kidney to always over produce can also be one of the factors that causes renal cancer and/or allows the cancer to proliferate (metastasise) and make it harder to treat. It can also lead to high blood pressure. 

Considering I have had elevated haemoglobin “off and on” for as long as I have been treated for high blood pressure (8 years or so), it is quite possible that the high blood pressure was related to kidney cancer and that maybe the cancer could have been caught LONG before it was. 

However, we are now “waiting” for the results of the tests and then the opinion of the experts! 

Hey, ho, this is not an easy ride and you do have to stay on top of what is going on and make sure you really DO understand. 

Next step, keep chasing the GP’s Surgery for the results being back, then see the GP to make sure he passes the results onto the Consultant Oncologist and Haematologist because they don’t get the results automatically! 

We will also get in touch with the Cancer nurse today to make sure she is up to speed (as she has direct access to the Oncologist) and also to find out what is happening about the “lung” issues. 

 One of the fun things is that the GP often doesn’t read “letters” from the consultants until you go and see the GP, yet one more bit where I have to join the dots up for the NHS 🙂  

In other news, whilst it is rare, Men do get Breast Cancer but are FAR more unlikely to check as they think it can’t happen to them  

Wed 31-Oct-2018   

At work in Penryn since I couldn’t go yesterday (had that blood test) 

Thu 01-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Fri 02-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Postscript 

What’s all this worrying about, well where to start: 

  1. I have booked “passenger assistance” for help getting the mobility scooter onto the train – not booked the scooter itself on as there seemed no way to do that! Will they be aware, does the system work? 
  2. Booked help at the Padders end to get it off, will that work it’s a much more impersonal and busier place 
  3. I asked about access onto the tube, they said it will be OK, however the wheels on my buggy are rather small, so will it work or will I get stuck. The biggest worry is the gap between train and platform. YES, I did check on the TFL accessible tube map and I did email them to double check, but I’m not convinced. Still, I do have Teresa with me which is a godsend as I know she will scurry around to find help if needed. 
  4. Ditto on arrival at Kings Cross 
  5. We booked a hotel that looks like it will work, is nice for Teresa, is accessible by me, will it be? 
  6. Then there’s the whole course thing 
  7. And all of that in reverse 
  8. Will the fatigue be manageable without an afternoon nap 
  9. Will the diarrhea be manageable 

Do I need to go on? 

Week 2 

Sat 03-Nov-2018   

At work at home and worrying about London and the Autism course next week 

Sun 28-Nov-2018   

At work at home and worrying about London and the Autism course next week 

I do try to use the worry to help ensure that I check everything I am taking, dotting eyes and crossing teas on all the travel plans, but still, … 

Mon 29-Nov-2018   

Work in the morning and then off to London. 

The original notes for what follows here were written contemporariously (or as Google tells me, contemporaneously, the spell checker couldn’t handle my “guess”) and can be seen “in the raw” in a similarly named blog entry. 

Try to compare and then realise how hard it is for me to turn them into meaning. Now Teresa doesn’t edit this, even more challenging! 

Here we go: 

There is a new 1st class lounge at Penzance (which includes the sleepers as we are considered to be first class – probably because we have paid an arm and a leg!). A helpful member of staff in the lounge sorted out our booked assistance. 

Boarding was easy and the buggy made it into guards using the ramp.  

Teresa had her customary red wine in the lounge but hated the new layout, more club than old style pullman. I wasn’t as fussed, but I know it’s an important part of her sleeper experience on the up-country section. 

After her wine and my cup of tea we retired, sorting out the cabin, getting nighties out, …, then to bed. 

The train stopped between Truro and St Austell (Snosel if reading the original notes, at least that’s how I spell the “local” name for St Austell) cos someone saw sparks from the rear coach (the guards van where my buggy was!) as it left Truro. I HAD to get up and ask our sleeper attendant and she told me what the problem was and that the driver thought it was all ok and he would do a “quick” test. After being stationary for over an hour we were on our way.  

By now I was totally awake and stressed that we night have to change trains I didn’t sleep and that was true all night. I guess I dozed a bit but really not much so today (Tuesday) will be tough with fatigue.  

Tue 30-Nov-2018 

We pulled in Paddington 20 mins late (about 5.30pm) and I got up and shaved about 6am, dressed and had breakfast. Teresa will have OJ (orange juice) for now and will wash and do her makeup in Padders 1st class Sleepers lounge.  

Passenger assist were a bit slow as they arrived when we were still in bed (when the train pulled in) instead of when we had requested and had to come back! However, they sorted out the ramp and I drove the buggy down. 

The tube experience is yet to come! 

No probs getting the buggy off the train and getting to the tube. I was stressed and we nagged TFL to send someone down with us to make sure the tube was ok. There is a designated disabled coach that lines up with a raised bit of platform where that is needed, but there is no marking on the platform where that is. Maybe you don’t need it at Paddington, but you may need it when you get off at your destination! It was bit of a bump across the gap but ok. Ditto at Kings x.  

7.40am Teresa needs coffee – the coffee machine ion the first-class lounge at Paddington was out of action, she was NOT happy! We went to Cafe Nero at Kings Cross for her coffee and my hot choc.  

I also picked up a baguette for mid mornings then we walked to the hotel, well me on the buggy, and left the suitcase with them. 

Onto the training centre at NVCO. 

The lawnmower (plus Bean) has landed, got here bout 9ish? Teresa escorted me to the room and was reluctant to leave me, worried I might need something. I persuaded her to head off to enjoy her day.  

From then on all was ok (ish). People were not that chatty (with me anyway) but they were mainly professionals (in the care professions) and so me being autistic they probably feel we don’t have a lot in common?  

Poo wise, it was full on constipation. Not a surprise after not a lot fluid but worrying hope it eases  

Course was ok as expected   

I was increasingly worried about poo (or lack of it) so I tried an experiment at lunch and raided grapes and cucumber … the results can be seen in this sequence of txt msgs that I sent to Teresa … coincidence???  

13.21 Tummy a mess. Aches and says wants to go and nothing happens but a bit of fart. Driving me nuts. Drugs time tonight!!!  

13.21 I tell a lie a tad of progress!  

13.22 I tell a lie. Explosive progress!!!  

13.26 I told another lie now we are talking Barney. All in the space of a few mins. Not sure what’s next   

14.25 msg from Teresa: Ok room is titchy and you won’t get the buggy in unless you block door and bathroom! On the other hand, you will need buggy for the maze of corridors! We need to talk to the women on desk to see if there’s a service room where you can leave/charge it.  

14.59 Oh no. Bean in panic about scooter anywhere away from him. Will let it sleep in the bed and bean will sleep on floor or in the bathroom. Major panic xxx  

We Finished at 4pm and Teresa was downstairs waiting for me and we went back to hotel.  

She had been visiting London museum and then spent time at the hotel, checked in, showered and writing in the nice bar area.  

Mega tired and txt from Teresa that room too small for buggy, mega panic, but, as it turns out it fits, albeit just, at bottom of bed.  

I had nap 4.30 to 6pm and just woken up and am down in the bar. I feel awful with just woken feeling. Like a zombie.  

We didn’t want much tea and the hotel bar just did “snacks” but Teresa had a nice plate of Charcuterie and I had a bit of Cheesy Macaron and plus chicken and chorizo meat balls (two). It did the trick. Then back up to the room by 9pm. 

Oh, and tonic water for drink for me, nice glass of red for Teresa. 

I hope I will crash again and so feel more refreshed tomorrow, right now is living dead time  

Wed 31-Nov-2018   

Slept to 6. My sleep was very broken but …. Breakfast was ok, mainly continental and I had some sort of crunchy type thing. Teresa is getting me sandwich from Pret a Manger across the road then off we go.  

At breakfast, Teresa and I had a tricky conversation as I tried to talk thru my concerns about not learning new stuff on the course and so I can feel myself switching off and I think I need to try to find out about our assignments so can use that as focus? I think the conversation was “difficult because Teresa was caffeine deprived and I was very “needy”, never a good combination. We survived. 

Here mega early and reported yesterdays blocked disabled loo hopefully it got sorted overnight. 

As we left the hotel, Teresa popped over the road to Pret a Manger and got me a Xmas sandwich. Rain had been forecasted but wasn’t a problem. 

Everyone seemed keen to have Luke (the course boss and presenter at the training) as their supervisor so I decided to be chilled and give the PhD student, who was to have half of us as supervisees, a chance.  

I need to find out what the assignments are as feel I am not learning anything new from the presentations. I did ask about yesterday about the course objectives for him, the University and the NAS (National Autistic Society) who paid for the course to be developed. His answer made sense to me but not appropriate to comment here. However, it did confirm I wasn’t going to learn anything new. 

I did make sure I asked him about the assignments but I only got a few seconds, however I felt it enough to “scare myself” to paying attention to look out for anything useful in the assignments. 

My body remains “poo light”, so there was another text exchange with Teresa (corrected for spelling and a little clarity) while I was waiting (in the loo) for activity. 

12.03 Went to loo prior to session starting, now at 11.44. Nothing happening. Really wanted to attend this session but as it started massive pains and had to return to the loo. Yup thats what it wanted. Now need to make sure thats all there is. Drives me absolutely nuts being this controlled. Definitely worse than a month or so ago 🙂 .   

Oh well better out than on. Time to see if it will now settle down.  

12.36 30 mins later increasing pain so back here and bottom touches loo and massive Barney. I am fed up!!!  

BUT no need for Benisons I can cope  

14.40 Took an (Imodiuminstant last time but here again with another barney and taking another instant. Now I am really fed up   

Chronic headache too, prob dehydration now!  

A full “Barney” is a very “watery” diarrhea attack and as such is also dehydrating – that’s why diseases like Cholera which it very much resembles in the bottom department, are so dangerous! 

Teresa met me as usual and we “walked” back to the hotel. I was wrecked so we went straight into the bar, had something to eat (same as yesterday, of course) and we went to bed for strictly and by 7pm I was laying down. I was awake a bit due to snorkling.  

Thu 01-Nov-2018   

At 6am I was awake with a sore tummy and so poo time, not feeling great.  

I feel very nauseous at breakfast and will try minimal eating during the day to see if it helps.  

Breakfast just crunchy nut thing (like yesterday) but no OJ or toast like I had yesterday. 

Just had my breakfast drugs (blood pressure and nausea) and back on Ondansetron today so hope for better nausea control however is also constipatory which doesn’t help the other problem!!!.  

I also took a Loperamide so double blocker and hopefully my bottom department can have a normal day – last thing I want is “trouble” waiting for the train (from 4pm to 11:45pm) and indeed on the train 

Well, it lasted to 2.30pm then start of pain warning. Yes a Barney but not severe so took an instant anyway just in case.  

Tummy remains sore but ok. Tummy prob means intestine, I think.  

Nausea is ok but   

Teresa collected me 

Both Teresa and I simultaneously wondered if it (diarrhea ) is the water as she has noticed things being “easier” for her. That’s not the same as it is for me but …  

We are at the hotel in their lounge (albeit checked out) as it’s a nice interim spot to start our 7hr wait from now (4.25pm) to the sleeper depart at 11.45pm though boarding is usually 10.30pm.  

Not drinking London water means no Tea, no ice, … I bought a bottle of (Welsh) water from Pret a Manger and hope that if it is the water, the change will settle my body as its just now sending alarm messages!!! As soon as Teresa gets back with the tonic water I will dash to the loo!!!  

No action but took another loperamide just to be sure. Diarrhea on the tube or railway stations is NOT a nice idea!!!  

Bout 6:30pm? Over to Kings Cross to eat at XXX – a nice meal then about 8pm onto the Tube for Padders. The tube worked as well as before and by waiting till 8pm (I wanted to go at 4pm!) we avoid the rush hour which is a good thing with a buggy! Kings X tube DID have a sign above the platform to say where the disabled coach would arrive. 

Waiting at Padders is tedious but not for too long. The 1st class lounge is useless, the coffee machine still not working, the disabled loo out of action. They have 3 loos, two with a shower (great for when you arrive, well for the first two off the train!) but it means everyone else is sharing a single loo. Not a problem this evening but still, they have just put it all in, you’d think they would think! 

Went for sleeper at 10:30pm, was expecting customer “assistance” to help, however the main cabin steward (don’t know the proper title) was on duty on our coach and I knew him from my previous journeys, he saw the buggy, expressed surprise and moved us to the disabled berth. They can’t book it as such as the loo next door (disabled access) is out of action. However, it was nicely roomy. I would not book it for me, it is needed for folks in a wheelchair who aren’t able to walk, but for this trip we weren’t displacing anyone and it was also closer to the guard’s van. The steward went down to the guard’s van to help fetch a ramp and the buggy was loaded. We never saw “customer assistance” 

I did have some comments on the effectiveness of the cabin for disabled access: 

Emergency button air con control out of reach of the bed. Door control lights shine right on your eyes.  

Grab handles to transfer to from bed  

But it was just nice for us to have space to spread. 

Fri 02-Nov-2018   

Customer assistance was waiting at Penzance, albeit at the wrong coach because we had moved! 

Still they did the job and away we were, home and bed! 

Postscript 

Please do try to compare this with the RAW version if you ever thought I was even a little competent at writing. This version has taken way into double figures of edits! 

 

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