Letter from the North

Gin, wet shaving, drugs working for now and some DIY – 31-Mar-2018

Teresa likes this!

Sat 31-Mar-2018

Teresa spent today at a singing workshop. I love this, she is branching out of the house and happy to leave me to get on with things. Slowly but surely, we are managing to move towards a normal (the “new” normal) life from the “all hands-on deck”, “pull up the drawbridge” and “repel all boarders”, siege situation we’ve been in pretty much since the early days of recovering from the accident and getting to grips with the cancer.

While Teresa was out I managed 8.5 hours work – catching up on time lost last week.

Sun 01-Apr-2018

Another 7.5 hours work!

Mon 02-Apr-2018

Bank Holiday, half a day’s work done. I know it’s a bank holiday, but I will lose most of Wednesday going to the clinic for scan results, so I need to get ahead.

I also managed to re-hang some cupboard doors in the annexe (Teresa had repainted them) and put up the glass fittings on the ceiling lights – above head work and hence all left hand with Teresa supporting the glass while I fit it – the fixings are tricky and need a light touch (not Teresa’s strength 🙂 )

But we got it done and it was something Teresa has been asking me to do for weeks, if not months, so it was nice to have enough mobility to sort it. We had to pace ourselves, me because I just get tired, Teresa because she has been poorly all weekend, what a pair of crocks we are!

Tue 03-Apr-2018

Today I drove into the office, this was my second trip under my own steam and it went just as well as last time. Working from home is all well and good and it lets me get more done before exhaustion hits, but it’s also good to touch base (horrible phrase) with the team and indeed the office, and once a week seems to work for that. This week I left at 1pm instead of 2pm as I could feel the fatigue building and needed to drive before it hit. All was well.

Although not actively thinking about tomorrow (results day), I’m sure it was working away inside me all the same.

Wed 04-Apr-2018

Results day. We actually saw the oncologist this time. We were a little apprehensive as we had, effectively, lodged a complaint against him with Pals, so didn’t know how he’d be with us. In the event, it was all very civilised and we all acted like nothing had happened. I guess it helped that the news was “good” (in this world, good means not BAD). Teresa was a happy girl after the news; Bean? Well, he’s autistic, so a shrug of the shoulders and a “we’ll see what happens in three months’ time…”

This is the summary of the state of play, as reported to our Kidney Cancer Group:

Well, Wednesday was scan day. A long update but I wanted to capture a summary of where we are five months on from the Car crash started us on this road (I refuse to call it a journey )

I am on Paz. My scans have been somewhat out of step with the treatment due to the accident.

The first scan was on 27th Oct (2017), for shoulder and chest plus another on 30th Oct for abdomen and pelvis – all triggered by the accident which led to my cancer being identified. Formal diagnosis was on 13th Dec, when the scans were 6 weeks old. Because of high blood pressure, I didn’t start Paz till 18th Dec 2017.

My first review was on Valentine’s day this year, three months after “formal diagnosis” but closer to five months after the original scans. This showed growth in the main met in my shoulder, suggesting Paz wasn’t working. The oncologist decided to scan again in six weeks to see whether the growth was down to the long delay between those first scans and starting treatment. Wednesday we got the results of this “intermediate” scan.

Much better news. The mets in the lymph nodes in the lungs and near the spine are no longer visible. The shoulder has either not grown or there is small shrinkage (a mm or so), the primary on the kidney may have grown slightly but remains within the accuracy of the scan so considered to be stable.

Overall, it seems like Paz is working for me, for now, obviously this can change at the drop of a hat.

We left the clinic feeling a lot happier than we went in! Loaded with 3 months’ supply of drugs:

Side effects of Paz continue:

  • Nausea – managed with Ondansetron
  • Blood pressure – managed with a cocktail of drugs
  • Diarrhoea – Ok, manageable with Loperamide and often just with the Ondansetron which tends to cause constipation, so between it and Paz, things are Ok in the bottom department most off the time
  • Sore Feet – udder cream helps a bit, not a major problem and no cracking
  • Fatigue is the worst, I can hit that brick wall any time between Lunchtime and 6pm, depending on how much I do. Just talking to people exhausts me. Still, I manage to do 37.5 hours a week (over 7 days) for work, though I don’t get much of a social life after that, but it keeps a roof over our heads
  • White hair, I’m 63, who cares, I look distinguished

It could all be so much worse. I still have no visible (to me) signs of the cancer itself and without that accident, we would still be ignorant of what was going on inside me. Instead I now have stable tumours with hope of shrinkage, I have to be grateful for that.

As for the accident, the bones are healing incredibly slowly (thanks Paz), but after 5 months I can use my right arm sufficiently to be allowed to drive which is a real psychological lift. It will probably take many more months if not years before the collar bone fully heals, if it ever does, but it’s already healed enough to make a big difference to my life.

Bean (and Teresa)

We left the clinic with umpteen prescriptions for Paz and for the anti-nausea drugs. This usually means waiting twenty minutes for them to be filled (it has to be filled in by the hospital pharmacy because only they have the cancer drugs); that gives us just enough time for a coffee. This time a cockup on one of the prescriptions meant that we had to wait over an hour, pushing the car park over the two hours limit (so, from £2.80 to £5.60). Teresa was a bit grumpy about this, given we were only likely to go over the limit by 5 minutes, so she toddled off to move the car out of the car park and wait across the road. Eventually I waddled out, laden with pills, and Teresa picked me up in the drop off bay outside the hospital.

That “waddling” is down to sore feet, dodgy hip and fatigue!

I’ve mentioned before about having to consider mobility aids, especially if we are to be out walking for a few hours (any shopping trip), as it leaves me exhausted and unable to enjoy whatever we are actually doing. So, on our way out of Truro we called into one of THOSE places, somewhere Teresa dislikes talking about never mind going in to. But in we went and bless her, in she came despite hating it. I do understand, it feels like “acceptance” of my terminal decline, and she’s not keen on that. Me neither, but I view it like the tool I use to help open jars, useful and accepting limitations without giving in to them – I can’t open jars like I used to, due to lack of strength in my right arm, that’s the accident not the cancer.

Anyway, we looked at electric scooters, found one that was Ok. It comes apart enough for Teresa to be able to get it into a car, and it is OK for me to drive about. We both hate it, Teresa because of what it means and me because it helps me feel even more like an old lady (see previous references to Margaret Rutherford 🙂 ). We took away a leaflet, Teresa needs time to get her head around this. Neither of us is keen, but we are both realistic enough to accept that I can do less that I used to. Indeed, this Saturday Teresa is going into Penzance for a ‘Table sale’ on Chapel Street, followed by a trip to Sainsburys, the thought of walking up and down Chapel Street, followed by walking around a supermarket, is something I can’t face. I could do it, but I would lose the rest of the day to fatigue, so it would be a perfect time to use the “buggy”, blah, …

That evening we went to Pz Folk Club to see Vicky Swan and Johnny Dyer. It was the first time at the folk club for me in a long time. I don’t get on with rooms full of people at the best of times. The organiser, Hilary, made sure that I had seating that worked for me, we also took my cushions so I survived, but it’s hard just sitting.

What I did do was drive home so that Teresa could have a drink, especially because, having changed hands, the Benbow now has an interesting selection of gins – Teresa does like her gin. So, I made sure I would be okay to drive home. It’s the least I could do since she rarely gets to drink when out because she’s on her own and has to drive. Well, this evening I could and did drive – and her gin of choice on this occasion was Opihr.

Thu 05-Apr-2018

Teresa finished decorating our bathroom some weeks ago. I had taken down the old light fitting and the mirror above the sink (and isolated the mains of course!) so that she could paper that wall (we both love colour and pattern and the bathroom has been a grey and white desert since the day we moved in). We bought new lights and mirror a while back and poor Teresa has been patiently waiting for me to put them up for her. I have been delaying because it needs me to have reasonable movement in my right shoulder. Today, Teresa decided I was good enough and needed a kick in the pants. Kick duly delivered (I didn’t actually need much persuasion to be fair to me) and about an hour’s work got everything done. The mirror is too low for me (limited by the slope of the ceiling) and the lights are in my eyes, but Teresa and Daughter are happy. I just have to crouch down to shave!

Next task are blinds, three of them, one in the bathroom in the main house and two in the annexe.

For this I need:

  1. To cut the metal work at the top but not the slats
  2. To cut some the wood around the window reveal so that the blind fits without adjustment
  3. To cut the metal header and trim the slats

None of them are big jobs, but all require me to do some work above shoulder height and/or use “tools” in my right hand. Like the mirror and lights, I am as much afraid as unable, in truth more afraid of using my arm. It’s a confidence problem and stupid really, I am quite capable of using but not over using it, I just need to get my act together, so poor Teresa has to “nag” me and then feels guilty. It’s not fair and I need to have a go this weekend at getting at least one blind up.

Fri 06-Apr-2018

I decided to try for the North Inn today. Thanks to the new mirror and some mobility in the right shoulder, I was able to wet shave for first time since accident, even with the low mirror it was wonderful!

I had a fantastic welcome from the locals a.t the North (well some of them, others ignore me, but they always have ???? ) Teresa and daughter joined me for a meal at 6:00 pm, I wanted to try one of their curries (which have a well-deserved reputation) since that’s something I can eat. I selected a medium heat, pork one. I can no longer handle very spicy food and pork worked so well at the Gonad last week. The North’s curries are quite dry, which isn’t ideal for me, but this one was wet enough for me to cope and was very nice.

Again, it was nice all three of us having a meal “out”. By the time I’d finished eating I’d hit my fatigue wall just by sitting and reading then eating plus talking to people (it’s the latter that knocks me out, yes talking is exhausting, welcome to the world of autism where people, even people you like, are exhausting work to interact with), add on drugs that knock you out anyway and …

So, I was home and in bed by 7:30pm! Still, I’d enjoyed my afternoon out of the house even though I was mega nervous about going over there in the first place!

Postscript

Teresa had a tough week up to Wednesday, horrible dreams (they’ve been going on for weeks now) and a very upset tummy for the early part of the week. I get upset tummy all the time and can handle it, but it was hard to see her suffering with one, it’s hard to see her poorly at all, I can’t help her, I can carry our joint “burden” of poorly, she doesn’t need to have any. Yes, that may sound like a strange sentence and I can’t altogether explain it, but it does say something! Feeling powerless to help her is only a mirror of how powerless she feels about my condition, the difference is I can do something about mine, within reason, and so don’t feel powerless. One can tie oneself in knots trying to get one’s head inside the mutual support Teresa and I need to have for each other, the mutual helplessness we each feel for the other’s problems, …

 

4 Comments

  • Victoria Osborne-Broad

    Gripping reading, as always. So pleased about the results. It’s great that you’ve been able to do some D.I.Y. things as if I remember rightly without re-reading all the earlier things, not being able to do stuff round the house had been very frustrating. And even people who have no health problems still find they don’t get everything done that they’d like to. Somehow there is always so much else to do.
    Re mutual sympathy, it’s awful watching someone you love going through anything. In one way it’s worse than going through things yourself. You two are lucky to have each other.
    I stopped by the car park to talk to David/Bean about seeing the Man Engine a couple of weeks ago. Reading what you said about talking to people being tiring, I hope I didn’t talk for too long.. Apologies if so.

    • Bean

      Don’t worry Victoria, I’d never allow myself to get over tired talking to people unless I had to, I do as much as I can and want to do. In your case I know I could say I wanted to stop and you’d understand, so you can’t get it wrong 🙂

      Yes, Kate and Victoria, not only is it “obvious” that ones partner suffers more than you do, as the “sufferer” I also find it helps stop me falling into self pity and stopping making an effort, so putting Teresa first actually helps me, so maybe I am being selfish after all – caring for her because it’s better for me? Hmmm, bit too existential for me. I’m not sure that’s how to spell it, I just hit the keys very fast without thinking and it seems to have worked, but looking back at it, I do wonder, no matter what the spell checker says. Of course I used the word existential (the second time the spell checker had to help me!) because it “sounded” like the right word for what I was trying to convey, but I’ve no idea if it was! 🙂

  • Kate Mole

    Dear Bean,
    Great result from the scans! I’m so glad you had good news at long last. Good about all the DIY too, and the driving, and work – real progress on all fronts. And yes I do agree with you and Victoria – it’s worse seeing one’s partner suffer than it is to suffer oneself. It just is, and I’ve tried both…. but it’s another thing that can’t be helped, and hopefully you’re both feeling OK now. Take it easy!
    Love,
    Kate.

  • torr macfarlane

    brilliant david , well done you ..

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