Letter from the North

Nausea, Beer, Beds, Chocolate and Customer Service

It has been mentioned that it was nice when these came out daily. I am gathering them into weeks so that I only need Teresa’s support in editing once and not seven times.

Bed hunting and nausea

Sat 2nd Dec: for the past few months Teresa has been decorating our annexe and we’ve reached the point where we need a bed. It got its new carpet a month or so back and, since my son and his girlfriend will be staying in the annexe during their Xmas visit, we needed to sort a bed.

To be honest, I’d rather not stir outside of the house but if we are to attempt our break on Dartmoor on Thursday (see later), then we need to prove to each other that I can function in the world. Teresa could sort the bed on her own, but why should we waste time that we could be spending together?! She identified three possible sources in Truro, all next to each other, plus the new Waitrose she wanted to try out was across the road too.

So, come Saturday morning, I was feeling rather nauseous and decided for safety to grab my “sick bowl”. Nausea is one of the two side effects they give you drugs for at the same time as the Pazopanib, but this was the first day I had encountered it.

Bed hunting was a success so off we went to Waitrose, still queasy but ok. While Teresa parked I wandered around the Cornish foods unit. The smell was just too much and I left it. I found Teresa who was worried because, having parked the car, she couldn’t find me, and we started to walk around the main store. That was it; a minute in, I felt sick so asked Teresa for my anti-nausea pills, which I had also brought along with the sick bowl, and I went back to the car. I told her not to worry and to take as long as she wanted. I believe she struggled with that!

Took pill, then 1 minute later the pill and a lot of phlegm christened the sick bowl. Despite it being cold I felt very hot so opened car door and started to feel a lot better.

Teresa arrived somewhat worried and did her best to clean up aforesaid bowl and drove us home. Felt better by the time we reached Sainsburys in Pz so we did our shopping. I also felt like some chocolate and it worked wonders for my tummy.

That was it, I have felt nauseous every morning since and have found chocolate to be definitely medicinal, I will need to get a prescription for it ????.

Sunday?

It’s a blur. I think after yesterday I just hunkered down and played with FPGA’s.

Vampires on Monday

I was due a blood test this morning, however they had some difficulty getting the blood out of my arm! Apparently the blood was rather thick and slow – quite possibly a side effect of all the meds as it was fine until I started Pazopanib. A week later that arm is still bruised, so I also suspect too many blood tests and cannulas for contrast injection in too short a time. I’ll suggest a change of arm when I go for my next scan in a week or two and also suggest that they put the canula in early, so they can use it for the bloods as well!

After the blood test it was straight off to visit work, stopping at Tesco on the way to pick up something to eat. I have found that I know if I can face eating something just by looking at it, smelling it or even thinking about it. In Tesco I felt the pasta salad was OK, but wasn’t entirely sure so also grabbed a plain cheese roll as a backup (good idea as it turns out). We arrived in Penryn at noon. I told Teresa I would be 1 maybe 2 hours but was 3 in the end. I spent time talking to the team, to personnel and to the MD. By the end we had agreed how I would restart i.e. working from home, trying to go in once a week just to keep the people links working, generally playing it by ear.

I was, of course, in maximum performance mode and having a whale of a time, high on adrenalin. But after we left I started to crash and by the time I got home I just crumpled on the sofa and that was me done for the day.

Teresa was worried as I shut down on the outside when I crash, even if my brain is ticking away happily on the inside, (see Snorkling later), which means that to her I can feel very ‘absent’.

Physio and the long walk, Tuesday 5th Dec

Today I had my first appointment with the physio. I have been given some exercises to get movement back into the shoulder. At this stage the focus is on movement not strength. The physiotherapist did identify a lot of clicking in my right shoulder and suspects arthritis, oh joy! We then had 1.5 hours wait for our appointment with the solicitor to sign our wills, so we had a long walk around town which went very well and convinced me that Dartmoor should be fine.

Today the thought of the smell of coffee makes me nauseous so poor Teresa couldn’t get a coffee. Tomorrow it may not be a problem!

Oops looks like I’ve run out of Tramadol pain killer, need to get some more ordered before Dartmoor. Teresa rang for an appointment (since it’s a barbiturate) but they could do a 2-week supply without that and we can collect Thursday morning – perfect!

Wed 6th, Dartmoor and packing

Some time ago (way before the accident) Teresa and I booked a long weekend at a hotel on Dartmoor. After the accident Teresa wanted to cancel as I was so poorly, however whilst I really can’t be bothered with such trips, she loves them. After all she has had to go through and will have to go through with me, the least I could do was give her the trip. So I insisted I would manage – hence me seeing if I could walk for a while, manage the nausea, …

Tomorrow we are off, so time to pack.

Thu 7th Dartmoor

We got away 2:20pm arrived just after 4pm. Despite our concerns I managed the car journey, albeit with fairly bad back pain.

The hotel itself was a disappointment, it had clearly bigged itself up and was no longer the same place its website and reviews portrayed, but I was determined to try to make it work.

Teresa had to load and unload the car. I hate her having to do this on her own and the sooner these bones mend, the better.

Once in the room and unpacked, I went down to the bar and had my first beer (half pint) since the accident.

However, by now I had mega back pain and sitting hurt, on top of which I was exhausted. The evening meal was ok but not of Teresa standard. I had a mega un-comfy night and just wanted to go home.

Customer Service? Fri 8th

That morning Teresa told the hotel about the state I was in but they stood their ground and since we weren’t giving them two days notice, they were within their rights to charge for the 2 nights left (out of 3) and this they were determined to do. From what I can gather, from Teresa’s conversation, this was owner’s attitude, not that of the staff. They could see how poorly I was but the owner was hard, initially resisting any concession. In the end Teresa did persuade her to a compromise but it was niggardly and caused Teresa a great deal of distress. I think rules allow establishments like this to refuse a concession to those who may be trying it on, or those cancelling for frivolous reasons, but surely there should be some flexibility in a situation like this, especially as the hotel was owner-managed, not part of a chain. Well, we won’t be going there again and recommend anyone else to avoid it. If we had cancelled on Monday, when Teresa wanted to, they would have lost even the first night’s income (we were the only residents last night!).

As an illustration of what I consider to be the antithesis of this experience: some years ago, Teresa and I stayed in a small pub/hotel in Cambridgeshire. Its rooms were much smaller than those in the Dartmoor hotel and a single night cost £180.

During the night the timer on the hotel’s water softener had reset and the machine ran all night long, seriously disturbing our sleep. We mentioned it at breakfast, didn’t ask them to do anything, but when it came to check out, they didn’t charge a penny for the room. A year later, this is where we had our wedding reception – good customer service attracts good customers; hard and fast rules protect against bad ones.

As I didn’t want to leave Teresa without any happy memories of Dartmoor, I encouraged her to drive over the moor to Tavistock – a lovely town. We had a good time wandering around before heading home.

Teresa didn’t want to go out again on Saturday, apart from collecting the Xmas tree, so on the way we stopped at The Range and Sainsburys in Pz for some Xmas shopping. I was still in a lot of back pain but I wanted to support Teresa so we did the shopping together with me retiring to the car only when she was paying. I paced myself and crashed when we got home. Poor Teresa, beast of burden, doing all the fetching and carrying.

Despite these tribulations, we actually had a good day. We supported each other throughout and it reminded me of the team I always felt we would be, and to some extent have been, although  life has often got in the way.

This cancer is crap but I love the way it has allowed us to push everything that is irrelevant and unimportant out of our lives and focus on each other. Almost worth it!

Snorkling as a sign of life

Sat 9th Dec, pause, …, sorry about that, I don’t wear my sling much at the moment, but although I can now “two-handed” type, I just tried to use my right hand without a sling supporting it at the elbow. Without it, all the weight of my arm is on my shoulder (collarbone and ribs) and they do NOT like it. Putting the sling back on makes things much less painful!

So, last night I was wrecked. I settled for sleep around 8:15pm and went off very quickly. However, I woke around 11pm needing the loo (clearly the re-hydration is working) and Teresa was trying her best to be quiet sorting out the kitchen. When she heard me moving, which is a noisy affair as I am now sleeping fully horizontal and getting upright without the use of my right hand side and not being able to transfer any weight or force through the right hand side is difficult, lots of throwing the weight of my legs forward and grabbing the back of the sofa to “ratchet” myself up. Anyway, I said to Teresa that I thought I had gone off quickly. She said yes, I did, she knew because I was snorkling a lot. Snorkling is a Teresa word but I hope it is clear what it means ????. I have lived with three women all of whom always snored. Being a light sleeper, it drove me nuts. So I feel VERY bad when I’m told I have been snoring, but no, this cancer lark has great benefits. Teresa said to me, “I didn’t mind the snoring, it meant I knew you were alive”, how sad, touching and liberating all in one go ????. I think Cancer is an extreme solution, i.e. that your partner is grateful that you snore, but there do have to be some upsides to this!

This morning I woke around 4am but felt awful, couldn’t sleep but was mega tired and felt like throwing up. So, I re-arranged my pillows and sat up and half-watched the telly, lying there feeling lousy and girding my loins. Eventually around 7:30am I thought “enough is enough”, got up, made a cup of tea and ate my morning muesli. By the time the cup of tea was ready it was time for my morning pills. I spent another hour sitting there with sick bowl to hand; it didn’t get any better but neither did it get any worse. So, here I am in my office, my upstairs sick bowl next to me and fingers crossed. But enough two-handed typing, even with a sling.

Postscript

That half pint on Dartmoor was nursed for over an hour. Pre-cancer, my first pint rarely lasted more than 20 mins, sometimes only 2!. The GP now limits me to 2 pints a night to protect my liver which is having to metabolise all the nasty drugs I am taking. So, my drinking patterns must adapt.

As an autistic, change is difficult but wanting to preserve my life for as long as I can, trumps that and NEW rules to follow are developed quickly ????. Anyway, life preservation feels to me like a good thing to not want to change. So, now I’m here, …

1 Comment

  • Elsje Smart

    Hi Bean

    I’ve been following your blog, I love how you write and getting an insight into the autistic brain; we suspect Georgina has Aspergers. Anyway, I digress. I wanted to let you know that I work for a “remote only” company, we all (200+ staff globally) work from home. To keep relationships-that-would-naturally-happen-in-the-workplace nurtured, we have a half hour daily Zoom call when we meet for a team update. Each day a group of us tell the others what we’ve been up to. (Zoom is like Webex/Gotomeeting, like Skype for grown-ups). Locally here in Europe, we have an open Zoom “scrum” for an hour in the mornings where we just have the call open, and seven of us work together, as though we were in an office. Not sure of your set up at work, but maybe whomever you sit with would like to hook up over Zoom for a bit on the days you’re not in the office? That’s only if you miss them and don’t want to be on your own, which I suspect isn’t the case anyway! 😉

    Take care, love to Teresa.

    Elsje

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