Letter from the North

Shaking, Showering and a Noddy Car, days 6-12

Shaking, day 6 (Monday 27-Nov-2017)

After a bit of a struggle, today I managed to get my blood pressure low enough to be able to start Pazopanib, the method chosen to deal with late stage kidney cancer. I checked with the Oncology nurses and, at 10:45, I opened the bottle and took the first two pills. I was shaking so much that I struggled to get them out of the bottle – this was really a physical realisation of the journey I am now on: that I will be taking this drug, or something else, till the day I die.

Once I’d taken the pills, I was fine, back to logical thought processes and getting on with things, but that 5 minutes was not a nice time.

I should say that, despite the physical reaction, I wasn’t consciously frightened; my logical brain was happy to get started, albeit worried about managing side effects such as high blood pressure.

My body, on the other hand, was clearly displaying a strong emotion that I wasn’t aware of. That is a classic aspect of autism i.e. I am almost never aware of an emotional reaction at the time of an event and if my logical brain isn’t aware that I am in an emotional situation, then I assume the emotion is for some other reason. Most often the emotion turns up hours or days later. Today, I did recognise my physical reaction at the time, but that is rare!

To try to help you understand, my hands and body were shaking, so there was a physical reaction, but I had no associated emotion at all, not excitement, not worry, nothing. If it wasn’t for the fact that I intellectually understand what is happening, that shaking would have had no meaning for me. Now this could be interpreted as “denial”. However, as this blog attests, I’m not at all in denial I am very realistic, it’s just that physiological/emotional consequences don’t run in lock-step with each other but each run in their own little world. This is not at all unlike PTSD.

Anyway, with the shakes over for now, it’s back to writing VHDL for FPGA’s. This keeps my brain ticking over and lets me asses how up for returning to work I am, at a physical level, after the accident – the answer is almost, but not quite.

The Noddy Car

Driving is certainly out of the question at the moment, I couldn’t turn the steering wheel, and I don’t have a car to drive anyway! More to the point, the painkillers contra-indicate driving and I do get sudden, unexpected bouts of tiredness. 

My employers are being very good and I will return to work with Teresa taking me in for a few hours once a week and the rest of the time working from home. That lets me work when I feel alert (often 5am or 6am till midday) and then to rest when I don’t – in the afternoons.

I have now accepted the insurance company’s offer for Blossom. It’s a bit low for this part of the world but it’s acceptable and we have other things to worry about.

I struggle with the idea of not replacing Blossom with a Landrover but that, I think, is not practical. Teresa hates the Landrover and has never driven it, so

  • She’d be left with a vehicle that’s useless to her
  • If there were any problems with her car, mine wouldn’t be a spare she wants to drive, and ultimately, she’s going to do more driving than me.
  • We need to conserve our finances

So, an economical small car (not dissimilar to Teresa’s Citroen Ladybug) and nothing at all like Blossom. For me, this is almost the greatest loss (well, it would be were it not for my limited life expectancy). Nevertheless, once I am able to drive again, it will be a Noddy car for me.

NOT Noddy means something that weighs more than 2 tons, can tow a caravan without noticing, and laughs in the face of a muddy field. Noddy means something that is economical, quiet and comfortable.

To a Landrover addict, Noddy is not nice language, to most people it’s just plain common sense.

Day 7 (Tue 28-Nov-2017)

A day of leisure and monitoring side effects (and FPGA work) but tomorrow Teresa and I are off to see the solicitor. We have been meaning to get around to making our wills for years (we did them before we married but our marriage invalidated them). The cancer has focused our attention and so we are getting simple mirror wills drawn up.

Sorting all the practical stuff is not easy, especially on Teresa, but this is the opportunity we get catching the cancer when we did. Even if I manage to do better than 2-3 years, it will still be good to have all this stuff sorted.

I can say that either removing the Naproxen from my pain meds (to help lower blood pressure) and/or my increased use of my right hand (e.g. typing this), means I am still very uncomfortable in the shoulder area, even with 100mg Tramadol and 1000mg Paracetamol twice a day.

This morning Teresa is off out for a couple of hours and she worries about leaving me. I will be fine and constantly re-assure her that she can see I am fine and I will tell her if I’m not.

Indeed, that has to be part of the deal to help her manage: I will always tell her how I am doing, whether I’m scared or happy, in pain or not, …, especially since David (her previous husband) died of a heart attack in front of her, without any warning. She worries about missing some sign she should have spotted in me (e.g. for the cancer) and about how I am now.

So, I am being very good at being very clear about how I’m doing and at times will even explain what a grunt or moan of pain means if she notices.

It is important for me to ensure that Teresa is “comfortable” constantly checking how I am, sometimes looking over at me every few minutes.

This is a partnership and we will get through it together.

Today is also Day two of the Pazopanib and, so far, there are no side effects, although I am sure they will build as I take more.

The Pazopanib has to be taken 2hrs after food and 1hr before, i.e. on an empty stomach.

I usually have breakfast around 6am, my pain meds are 8 (am and pm) and lunch 12:30pm. This means that the Pazopanib is set for 10am – nicely in the middle of the no-food window.

The Great Shower Challenge

It’s now 4:45pm and I’ve just had a shower. This is a two-person job. It helps to have a partner, and to also have shower big enough (just) for two. I can reach with my left hand but not with my right. I can therefore wash my hair and right arm and all the chest. I need Teresa for left arm, back and legs.

Same problem with getting dry.

The trouble for Teresa is that it’s cold at the moment and she gets splashed by the shower but is not exposed to the warm water, so she gets cold, whereas I’m not too bad.

It’s a long time since we last showered together, shame it took a major accident before we got to do it regularly – thank you Teresa, no greater love, …

Blood pressure scare, Day 7 (Wed 29-Nov-2017)

I had a bit of a scare last night when my BP hit 150/100 and a pulse of 125. I was worried as that’s not a good place for me, so I self-medicated with 8mg Candesartan, and that calmed things down.

This morning it’s off to the solicitor’s to do the wills, then to the GP to discuss BP and crazy high pulse, then back to Sainsburys PZ to do some shopping.

This heart stuff is worrying, especially the pulse as the BP medication doesn’t touch it and it was like that before the cancer drug started.

The solicitor was very helpful and raised the issue of Power of Attorney, a good question!

Then Sainsbury’s and found a lovely soft and colourful cardigan just right for me ????

Then onto the GP. He was brilliant, told me not to get so worried about BP as that was making it worse, but is adding a new BP medication XXX, xmg to be taken in the evening and has lined up some blood tests to keep an eye on things.

We are lucky to have a GP who takes an interest and is helpful and accessible.

A day of enforced leisure, Day 8, (Thursday 30-Nov-2017)

Teresa was off for a counselling related training day in Truro (Motivational Interviewing) and left me at home to fend for myself. So, not wanting to worry her, I spent most of the time wrapped up in my duvet on the sofa watching the TV. It is as indolent as it sounds, but is the exception, in general I’m trying to my keep brain active. But it meant I wasn’t tempted to do something “silly”, which Teresa worries about.

On her way home she stopped in Penzance to picked up some fish and chips (normally a fortnightly treat) but I see no reason to deny us now! Next she headed over to St. Just to pick up the new drugs (because they are not common and our dispensary didn’t have them on the shelf).

Fixing the graphics, Day 9, (Friday 1-Dec-2017)

Back to working on my FPGA after my indolent day yesterday, but first job of the day was to change the graphics card on Teresa’s computer. A week or two ago, after an update, Windows 10 reduced its resolution on her old graphics card and she hated how the screen looked with the lower resolutions. Apparently, her Graphics card is no longer supported by the manufacturer and Windows 10 decided recently to downgrade the possible resolutions.

The simplest fix was to fit a supported card, so on Monday we put in a £30 Amazon order. It was delivered Thursday and today we fitted it.

Not a simple task because I am very limited in what I can do physically and getting access to the computer and cables was a mess. But between us we got it sorted, the cables are now a lot better organised, the new graphics card is in and the resolution is sorted. One very happy Teresa and hence one very happy Bean.

Right now, Teresa does a lot of the work around here and is constantly doing stuff for me. It was so nice to be able to do something for her.

Yesterday, the GP updated my sick note to “phased return to work” so I can get my brain back into gear (which is why I have been doing all the FPGA work to stop from turning into a vegetable, lounging on the sofa). This was my choice, the GP asked if I actually wanted to return to work at all and it seemed to me that I could get “signed off” for ever, but of course that’s not the same as getting paid for ever and anyway, I love my job and since my company will let me work from home, why not?

So, this coming Monday we’ll go in for that blood test, then off to Penryn to make arrangements to get back to work. Tuesday it’s the physiotherapist, to see if we can sort out all the shoulder joints that are really angry with me for not using them for 6 weeks!

As Teresa says, the accident and broken bones is the visible illness and the one everyone notices, including us. The cancer is invisible apart from the drugs and at times it’s hard to remember that how crap I feel at the moment is down to the accident and pain killers NOT the cancer or cancer drugs.

It really does f*ck with your head!

Postscript

If you don’t understand the words “FPGA” and “VHDL” then you don’t want to, they belong to the deeply techy part of my life that I try to protect the world around me from. Think of it as writing software for electronics instead of computer chips and now you are probably even more confused!

This blog has been much more of a diary than a “story” because, having got past the spike of the accident and the spike of the diagnosis, life does become more mundane. The outcome remains the same, the fear is the same, and yet what is happening starts to disappear from other people’s horizon. Until I start looking “cancer” ill, it’s impossible to believe it is a serious as it is.

Quick update, when the next instalment comes out, I’ll be reporting that the side effects of the cancer drugs are now well in evidence, oh joy, sick bowl in Waitrose car park anyone? ????

The Bean, At Home, Sun 3-Dec-2017

2 Comments

  • Kate Mole

    Dear Bean,
    It must be very hard to sort it all out, but maybe, as you continue recovering from the physical effects of the accident, and your injuries heal, you might start to feel a little better? At the same time of course the side-effects of the cancer drug will be making themselves apparent – but with a little luck, these might settle down a bit as your body gets used to them. What I’m trying to get at is: it could be that you experience a phase of not feeling quite so bad! I do hope this actually happens. I can see what a roller-coaster journey you are on. I admire your powers of expression, as usual, and my thoughts are with you and Teresa.
    Very best wishes, Kate.

    • Bean

      Indeed, it is a roller coaster and I’ve always hated roller coasters ????.

      The broken bones are getting there, their healing process is slowed by the cancer meds which affect the healing process – indeed you usually have to come off them before any medical procedure. I started when I did I think because I was 4 weeks on from the accident and the important healing had started. The consultant felt it better not to wait before starting the meds, hmmm, not sure how I feel about the implications of that ????

      In any case, I started physiotherapy to get my arm back into action on Tuesday and that was a nice milestone.

      I have good days and bad days, more good than bad at the moment as we find out how to manage the various pains aches, nausea and exhaustion.

      We constantly hope for the best, expect the worst and accept whatever we get from in-between.

      Teresa and I are starting to find a “normal” (well new normal) way of life, based on short term horizons and goals and it seems to be starting to work for us. I’ve started back at work (working from home), and I can see Teresa start to do other stuff outside of me which is what I wanted to see.

      We are getting there, and certainly we aren’t sitting here moping away, we are both “get on with it” people, but the adjustment takes time.

      Thank you for yours (and everyone else’s) wishes, they are always appreciated.

      Bean

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