Letter from the North

Blood pressure, poo, yoghurt and ignorance – 08-Dec-2018

How it begins: 

 

Jane on my lap, Burli (facing the camera) jealous, joins her… 

Fri 07-Dec-2018   

I ran out of time to do last week’s Friday entry (the first day of our weekend in Exeter, so here it is now: 

We left 9am but I still managed to put on one black and one blue shoe (same style just different colour kept in the same dark corner of our front porch). Also forgot to pack my razer, who knows what else? 

Just after Bodmin there was a massive tailback. A car had crashed into a ditch on Temple (where else!) we eventually reached a diversion set up by the police onto a minor road past Colliford Lake and onto the A38. They didn’t stop the traffic coming from the other direction so all the drivers were taking a risk “dashing” across, it was dangerous and I’m surprised there wasn’t another accident, rolling roadblock anyone? The queue was all the way back to Bodmin for much of the day. 
 
It added about 1.5hrs to the journey. We were busting for the loo and stopped at Tamar bridge services then the ultimate insult, we had to pay to leave Cornwall because we were not on the A30. 

We were planning to go to Ikea at Exeter on our way to the Hotel in Exmouth, we were somewhat late but we had a good time whizzing around (me in the buggy). I even found a day bed for the living room to replace the sofa I have been sleeping on. Hopefully we will get that ordered soon.

Left Ikea at 4.45om with busy roads to Exmouth and satnav was confused about our destination based on postcode only, but cos I had street viewed I recognised the start of road.  

Yes, the hotel (Royal Beacon) has a car park with a reserved space (if you pay, we did), but it is very small and tight with a very tight entrance, we got in, just, Angelique is NOT a city car!.

By the time we arrived it was too dark to see the sea even though our room had a sea view.  

No time to sleep, so we had a quick meal, which was OK, but nothing to write home about, sums up the hotel, “perfectly pleasant” but wouldn’t go again. 

We had booked a taxi to the pavilion, a few minutes’ walk but too much for me, the receptionist wasn’t convinced we needed one, I assured him I wouldn’t make it without one and I wouldn’t have, it was the right decision. 

The concert (Show of Hands) was brilliant but the end time we had been given was wrong and as we had booked the return taxi, we missed the last number and encore 🙁 

Mega tired, crashed but still frequent waking. 

No poo all day or sign of any so I took a softener

Sat 08-Dec-2018   

Still no poo.

Breakfast at 7am to give Teresa time to enjoy it before driving to Exeter to make sure we could park OK. Tight nickers and leggings hurts my tummy so much yesterday, so, I need a plan B and wore lighter nickers and lighter leggings today and the pain was easier. 

There was a tad of poo during breakfast (but in a loo 🙂 ), but I had had muesli and orange juice as well, I suspect I may have cork out of bottle syndrome later. 

The journey and parking were OK. I found my chosen car park. There were no disabled bays but I had seen from Google Maps that there were areas of yellow hatching we could park next to, to give room for the ramps, we got there early enough and parked next to one and the buggy was easy to unload. Blue badge park for free, please note Cornwall!!! 
 
A steepish climb into town but only 5 mins so battery whinged but recovered. 
 
Teresa is happily shopping. I needed loo so loo and tea in Waterstones. Not a great design of loo with the sink so close that I cannot sit straight. 
 
And yes, from solid sausages to explosive in less that 2 hours. I don’t understand. 
 
Now sitting in Waterstones while Teresa book shops  
 
Onto John Lewis. Teresa did a lot but bought nothing “I don’t know how to shop anymore” she wails, sorry pet. 
 
Me two pairs woolly tights to try instead of leggings plus some more Chanel Chance Eau de Toilette, I find it nicer than the perfume version and also the original is better than new “flavours” of “Chance” available. 
 
Now in M&S coffee shop. Just like the one in Plymouth, I suspect same architect? Teresa queuing me found table and waiting for sausage bun and hot choc. 
 
Getting out may need a lot of reversing, this place is so badly designed for disability, even pushchairs (of which there are many) just block the aisles.
 
God, even for the loo, wheelchair access is rubbish. Mobility scooter much worse. I guess I am expected to walk with a scooter and not wheelchair. Maybe need to change in the future? 
 
Teresa is getting stressed because I struggle. “Trust me, I will say if not manage or need something” I say, but she struggles to believe me. Sometimes she worries too much and that worries me and it’s a vicious spiral! 
 
After we left Marks, the heavens opened. The buggy cover/cape is badly designed with water coming through arm holes as they open upwards not downwards and even with Velcro, leak! Will try sealing then with gaffer tape. We walked through a soggy Xmas market, shame not stop and shop, but too wet. And we are on our way to the car. Car park full of people trying to find places and blocking your exit in desperation, we decided to come back to hotel. Me have a nap and Tereasa walk into Exmouth. 

On arrival back at the hotel, tryign to get into the the car park, our space (actually labelled as such) is occupied. There is also a Merc, not in ANY space,  also blocking manoeuvring space. The hotel moved our reserved to a better slot for exit but will be difficult for Merc to get out and others in. Oh well hope for no damage. 

Teresa left me deal with minor poo and then nap time. 

Eat in hotel is easiest not great food but is OK. 

Sun 09-Dec-2018   

This was the reason we actually went up to Exeter – for a carols workshop for Teresa, lunch and then a carol concert in the afternoon, all at Halsway Manor. 

However, before we left, we had to get out of the car park at the hotel and it was a nightmare, the turn onto the road outside is very narrow and with cars parked opposite there is only just enough for a car when parallel to them so doing a left turn in the bus was impossible because of the adjacent wall, I just managed a right turn (around a car parked against the opposite wall) and away we went. 

Arrived at Halsway with no probs but instead of the workshop being in a different room and me able to hang around in the bar, they moved the workshop to the bar and left me sitting in the drafty hall. To be fair they fetched a comfy chair and sat me in front of the blazing fire, so I was fine, but I did feel a bit shunted” 

Teresa seemed to enjoy the workshop. 

Then it was lunch which for a mass-produced meal was quite pleasant however I felt awful and almost skipped it completely, instead a diarrhea trip, drugs and pain killers seemed to settle me enough to eat a little. 

We then went into the bar to wait for the concert. While there I nipped to the loo (as I do) and whilst Teresa was sat down, some people came in and sat at the table where we were (all this I found out later) and commented: 

“Have you seen that man in a dress” 

“He’s only doing it for attention” 

Terresa was livid and said: 

“That is my husband you are talking about and he doesn’t do it for the attention” 

I came back from the loo as she was walking away but although she said she wanted to talk to me I never heard her say that. 

I went and sat down unaware and she came back and was clearly unhappy so we got up and she explained, I wanted to have words with them, but she asked me not to so I went and collected my bits and we made our way to the concert. 

She had good cause to be angry 

  • First, how ignorant 
  • Second, how stupid to say it in front of her!

We think they were “locals” come in for the lunch and concert but that doesn’t justify such bigotry. It’s rare we have to deal with such attitudes and when we do it is really quite unpleasant. 

I call it ignorance , it may have been nasty, but I find some people just say what they hear down the pub or read in the tabloid newspapers and regurgitate it without thought. 

I doubt we will be back to Halsway Christmas again and I certainly won’t ever. No, it’s not their fault but I just wouldn’t want to put myself in a place where such attitudes are considered acceptable by the people attending. 

Then we drove home, stopped at Cornwall services where I had a double Makihata to wake me up and home no problem. 

Except I felt a bit odd after we got back, checked my blood pressure and it was 156/101 (not 120/80), not mega dangerous, but not at all healthy. 

A lot of rest got it down to more like 135/90 by the morning and even more rest and by the Tuesday we were down to normal, phew. 

Was that the result of the activity last week and the weekend, was it the coffee, was it the pain killers I have been taking for my shoulder. Will need to do some experiments but not until after the scan results next week! 

Mon 10-Dec-2018   

CT scan, they wanted my right arm to do things that my locked shoulder will not do! Otherwise all went well, the hospitals car park was full so we had to park across the road and a quick yomp up the road to the hospital, I say quick but by the time I reached the hospital I was at snail’s pace. Arrived just in time for appointment and straight in. 

Only compilation was when they asked if I was a “bleeder” before removing the cannula. I said, not usually, but apparently, this time I was, the pic below shows the mess made (under the skin) as it slowly stopped bleeding. 

There is much more bruising now (Friday) 

We then picked up a Christmas Tree (a week late for us, we try for the 1st December) and put it in the house and that was me wrecked for the rest of the day and we left it lying on the floor in our front porch. 

Tue 11-Dec-2018   

We stood Christmas tree in its pot and clamped its base, filled it’s stand with water and loaded it down with granite blocks. Hopefully the cats will not climb it (yes, I don’t believe that either) but if they do it can contain their weight. 

In the afternoon I put on the lights and tomorrow Teresa will do the decoration (she enjoys doing it so I do nothing) 

Wed 12-Dec-2018   

Try to do a poo, no poo, but got blood, I thought we had got past that, bloody bottom 🙁 .

Dash off to get blood tests done (for next week) and took a “softener” to see if that gets things moving without needing ANY push at all. 

Back by 8:30, quick cup of tea, put up our outside lights (a quick job, but probably all I will get done today) and a “soft” poo trip with minimal; blood. Fingers crossed, of course it is likely that my body will tip into diarreah, but hey ho, … 

A week today and we will know so long as the CT scan has been reported, scarily close 🙁 

Thu 13-Dec-2018   

Softener before bed last night, no dice, one when I get home from the office, ignition!!! 

I was in the office today for a few hours which included going down to the Greenbank Hotel in Falmouth to work out access to their function room. If you are in a wheelchair, forget it, too many steps. However, they have reserved me a space in their underground car park and there is a staircase direct to the function room just outside the car park, so, as I can handle stairs when I feel good, that will do. Roof height is close for Angelique but I was told by the folks with me that I had enough despite me feeling I was about to hit something at any time! 

Teresa and I have been wondering if either the Benecol “drink” I have at lunch or the yoghurt I have in the evening may be contributing to the diarreah problem so I stopped at the beginning of the week, it’s starting to look like it behaves the same as fruit and vegetables as an “antagonist”, after another week or so, will try introducing one of them to see if it changes things! In the meantimne there is a lot of constipation which is worrying and I may “relent” and try the yoghurt in a few days, not a week!

Fri 14-Dec-2018   

Well the constipation continues and it’s a struggle to get it moving, so I’ve gone back on the Benecol and Yoghurt and will then try reducing them. Right now, constipation is a problem because of the internal pressure and the risk of triggering bleeding. Diarreah is also a pain, it’s a hell of a problem finding a balance. Well I did say yesterday “few days” 🙂 

The Ondansetron, that controls my nausea so well, we know causes constipation but the cancer drug (Paz) causes diarreah. They always used to be in balance and then shifted to the diarreah end, maybe a bit of reduction in the yoghurty quotient will restore a semblance of “normal” who knows? 

Spent some time today helping Teresa sort the sitting room (throwing away a load of Beans stuff). Then some time doing the same in Beans office using the same technique. 

Virtually all of my DVD’s and books are gone, CD’s will not be far behind, it’s tough but I’m never going to get to see/read them, so it’s better to go now than for Teresa to have to sort it later. 

Also, I have spent much of my life sitting surrounded by “stuff”, cramped by the volume of it, all useful at some point. One of the “up” sides of knowing you have a limited time left is realising that you never will use it now and it isn’t going with you so throw, throw, throw. It’s sad so much of my life is going, but then that’s the reality of my situation and I have to say that the space I am creating is quite liberating so I am choosing to see the process as a positive one, tough as it is to do. 

How it ended 

Burli “deployed bottom” and pushed Jane out of the way. Jane retaliated by sitting on top of Burli! 

Postscript 

Only 3 days (it’s Sunday) to the scan results, do those marks on the last scan (3 months ago) mean cancer has progressed to my lungs or not. What other good/bad news is there? 

One can always hope it will all be good, and I do, but I have to prepare myself for the worst, it’s so hard. I know I have a sword of Damocles above my head suspended by just a few threads and I cannot see how many are left holding it up. I know one way, successful for some, is to pretend the sword isn’t there and just keep going and “if it falls, it falls”.

Me, I’m of the view that if I start to hear the last thread creaking I want to see if I can’t dash out of it’s way(change treatment), make my peace with death, say goodbye, …, I’d like choices, not to be taken without ever knowing.

No way is right for everyone, but mine is for me, …

Wednesday morning we should know, if those results are in

Tick, tock, tick tock, …, was that twang I heard another thread breaking or just the wind?

The Bean, Pendeen, 16Dec-2018 

 

 

6 Comments

  • Kate Mole

    Dear Bean,

    Very, very difficult, I can see. All I can say is that the time will pass, no matter how slowly, until you get the results. You will get there.

    And I know it’s not much use saying this either: but – don’t worry about stupid things that people say. Just – don’t worry about them.

    Love,
    Kate.

    • Bean

      Thank you Kate, we’ve been through this enough times to know that the time will arrive and even then that the results can still not be available but we will, ultimately, get them.

      I know some people say “well there’s nothing you can do so no point worrying”, for us, this is literally life and death, not did I pass the exam. So, we do worry even whilst knowing there is nothing we can do, neither of us wants to lose the other or hear that such a time is closer than we thought or, indeed, imminent 🙂

      So, we just do what we do, as you said, others opinion doesn’t matter, but just like the ignorant people at Halsway, I do try to reflect and challenge people with what the world is actually like for us and not just what rosy spectacles may reveal :-). To educate, because only education can remove fear and ignorance, well that’s what I think 🙂

      Bean

  • Robert Erskine

    I hope for the best resuts, Bean.

    Having had a TIA recently, I am very well aware of the sword of Damacles. It does help to concentrate the mind wonderfully.

    Robert

    • Bean

      Thank you Robert and I am sorry to hear about the TIA, we both know sorry doesn’t help, but …, we all have that sword hanging, it’s just some of us can see it and it does indeed rather focus our attention.

      Bean

  • Victoria Osborne-Broad

    As always, the details allow your reader to go through all the experience with you, and really brings it to life. I’m so impressed that you can keep doing this, every week, and take us all with you. Hoping, as I’m sure everyone is, that the scan results are good ones,.
    Love, Victoria

    • Bean

      Thank you as always Victoria, I do my best with the writing though nowadays I get the “interesting spellings and grammar Bean” from Teresa when she reads it after it’s posted :-).

      Bean

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