Letter from the North

Pockling on, bottom news looks good, am I a nice husband? Christmas?

Barney is ready for Christmas dinner!

Pockling on – Sat 23rd

So today we had a visit from the Community Nurse, I didn’t even know we still had them. she was brilliant at helping sorting out bed, sleeping, pressure problems on bottom from all the sitting/lying,…, only question is why on earth did we not know she existed until now?

We only found out because I asked the cancer nurse at the Sunrise Centre in Treliske whether there were any questions should I have asked, but hadn’t, and this was her suggestion (had I known, I would have asked!!!).

The fracture clinic could, and I think should, have been more proactive on that one. Still, 2 months late, we are now plugged into the system!

Teresa took Tom and Tatch to the station at lunchtime having collected the turkey earlier on that morning. it’s a bit big for just two of us, but hey, that’s what freezers are for.

For me it’s a big relief she WANTS to cook Christmas dinner on Christmas day. That said, I will still keep an eye on her and delay it at the first signs of stress, but fingers crossed 🙂

I’m feeling a lot better today, indeed I did yesterday too. Had a sleepy time 12-2pm but now (4:45pm) whilst not firing on all cylinders, I reckon a good 30% are firing and that’s brilliant, been on 1% for much of the last 2 months!

Teresa is also looking reasonably unstressed, though “gormless” shoppers in Sainsburys added to her stress levels. That’s all done now and it’s just her, me and 4 mad cats!

I’m still pockling along on work, which is quite useful. This stage of getting a Windows device driver development environment working is extremely tedious, I once was “in the flow”, but we are now on much later versions of Windows and I now have to learn a whole new set of undocumented secret handshakes to get things to work together properly.

I also need to get some cables and finish connecting an amplifier up to my speakers and hook that up to my mixer and other bits. It’s a shame all my old studio equipment was sold when it came out of storage, I had no idea I would end up working for an audio company. So, one of many reasons I enjoy my job, and will fight cancer to keep it, is that I love the field I am working in and the technology I am working with – it truly is a dream environment for me and I will keep at it for as long as I can.

Poo report and being a nicer husband, Sun 24th

Yesterday poo news wasn’t quite so good, Friday was clear but Saturday had a bit of bleeding, not so much, so hopefully still on right track and keep on with the laxatives.

This morning was brilliant, no pushing needed, great texture and no blood, phew!

Now I am aware that this talk of “bottom” issues is difficult for some (Teresa included), but embarrassment and/or squeamishness KILLS. I know my issues are a weak blood vessel and not cancer but my recent bottom symptoms are identical to bowel cancer and that kills if not caught soon enough. Indeed, after age 60 the NHS send testing kits automatically to males (not sure about women).

So, no embarrassment, no squeamishness, get your doctor to stick their finger up your bum to check for prostate problems. Report any bleeding or unusual behaviour in poo or wee. I for one would rather live and be embarrassed than die, and you can be sure Teresa would rather that too!

Lecture over, but I will not apologise for it and the poo reports will continue as often as necessary 🙂

I commented to Teresa yesterday that I felt I was a more loving and caring husband at the moment – she agreed.

I am still autistic, I still don’t get this emotional world but my “intellect” is MUCH more highly tuned to her needs, so I just remember to kiss and cuddle her more often than I usually would. It’s a high price for her to pay, but at least there are some good sides to her from my condition!

I had an odd night’s sleep yesterday – I woke every 2 hours for a while and then slept 5am to 8am when my drugs alarm went off. I haven’t “slept in” (i.e. later than 7am) for ages, which seems to confirm I do feel a lot better in myself at the moment.

5pm and back in my office, spent 4hrs this afternoon dozing – I do sometimes need to just rest. Today was one of those days. Now I feel much as I did this morning i.e. what passes as alert for me.

We have stuffed the turkey, that means I did the “icky” (not for me but is for Teresa) stuff like sorting out the giblets and extracting the liver for her stuffing. Then loaded the turkey with Teresa’s stuffing mix. In both cases she can, and before my time, did do it herself, but she’d rather not. Even in my one-handed state I can do it, no problem, so along with the sprouts in the morning, that will be my bit done for Christmas, not much is it? :-).

Last minute poo update: bottom insisted it need another trip around 10pm, I disagreed but apparently, just like the cancer, my views are not relevant 🙂

Hmm, less than perfect but better than not, nice texture, no blood in water, bit in “clots” which I suspect is old blood and that’s it.

So, still Ok, but I continue to worry until I am clear.

Mon 25th aka Xmas Day!

Hmm I got myself up around 6:30am (unlike the 21st) but still ended up in tears for no reason (though I suspect it is the unconscious awareness that this could be my last Christmas!). Anyway, made a cup of tea and had my muesli and Teresa came down at 7:15ish to put the sausage rolls on, asked how I was and I burst into tears and continued to do so over the next 15 mins or so. Poor lass, my emotions, are typical autistic, they come out of nowhere (in terms of understanding the cause) hit like a nuclear bomb and disappear without explanation or apology. Teresa is left in the aftermath and upset whilst I’ve moved on to joking about poo reports!

I do however feel ok and hope I can communicate that and try and lift our Christmas morning up towards a fun Christmas dinner – I feel a lot of hugs and kisses are going to be needed. I so hope I can remember to do it. I hate having to rely on memory, but instinct in me for emotional stuff just doesn’t exist, it’s all logical.

So,

  • Poo report – nothing happened, clearly last night syphoned things off and I’ll need to wait.
  • Beard report, I’m not on public view so haven’t shaved since the 21st. I did this morning and my beard used to be salt and pepper like my small amount of head hair. Beard is now pure white which I suspect head will be after its next shaved off. Going white is a well-known side effect of Pazopanib, fortunately white from grey is a small step, one of the advantages of older age 🙂
  • Weight report, down a tad and hovering between 15st 13lb and 16st – it’s weird trying to keep weight ON when I have spent the last two years eking it down at a pound a week. Now I have to fight to keep it on!

I am in my office, working on Xmas day. I was asked at some point in the accident questions at A&E or somewhere (maybe at the first Oncology consultation?). “What is your job” (well first “do you work”) and I said Computer Software. They then asked what do you do for fun, I replied “write computer software” and it’s true, it is fun for me and doing it helps generate fields of normality around me, bizarre as most people would think, I am having fun :-). My line manager emailed me Christmas morning just to say I was missed. Had both of in tears, such a small gesture and yet, …

Autistics are known for having ‘special interests’ and mine is computers and always has been since I was 16, that’s 47 years ago. Computers with less capacity than the average mobile phone today,  filled whole rooms back then.

9:10am, just wandered through to fulfil “cuddle job” and actually woke Teresa up, oops. She’d a bad night (not unusual at the moment and not surprising either) and was saying she needs to get on. I reminded her that I don’t care whether Christmas dinner is 1pm, 5pm or next week and she has gone back into doze in the armchair. I’ll leave her there for as long as she needs. This is something I can understand and do the right thing about 🙂

Ok, Teresa took things nice and easy, produced a minimalist Xmas dinner (my family are used to 15 different sorts of Vegetables but today we just had sprouts and roast parsnips and red cabbage that Teresa had made ahead – I will write about that another day, it represents another case of good customer service i.e. caring for your customers without expecting money for doing so.

I, like I gather David my predecessor (Teresa’s first husband), like Yorkshire pudding with ALL roast meals including Christmas dinner, and Teresa says, “I do make killer Yorkshires”, damn right she does!

The meal went very well (2:30pm-ish). I was able to help carry some things through and whilst I had not helped at all in the cooking, I felt a part of getting it all to table. Christmas dinner tasted fantastic – I hate to say it but probably the best we have ever had. I say “hate to say it” because I think the stripped-down part and Teresa doing it her way and not sharing it with me, produced the perfect meal. Certainly, I want to hang around for as many of these Christmas dinners as I can :-). The cats were certainly keen to help us with the meal.

We then opened our presents to each other and after that just vegged. Later on, I did the ’spatial awareness’ task and helped Teresa find the right sized Tupperwares to get the leftovers safely away, and then got them into the fridge. I may not have helped with the cooking but I got all the leftovers safely into the fridge.

Poo update

I am a morning person in that department, but I now seem to be a late afternoon person, I suspect that’s how I react to the laxative, anyway, flexibility is key. No requests from that department all day, then a decent sized lunch and plenty to drink and away we go. Well, good volume and texture (i.e. not diarrhoea which would indicate that the laxative is doing too good a job) and no sign of red. I call that a good day!

 

Boxing day – Tue 26th

A nice quiet day, nothing much to report,

Got my old NAD Amp and Denon CD Player hooked up to my PMC speakers and have proper audio running here in my office. First time in years. Done so I have a proper audio output for the work (proper job) I am doing from home, but a nice side effect is the chance to listen to better quality music than mp3s!

5:45pm, at long last the bottom department has woken up and all is well. Clearly, I have shifted from being a 7am to a 5pm person, oh well, so long as it all works properly and without nasty warning colours, I am happy.

Wed 27th

Off to the physiotherapist at 9am. We need to review the exercises as I think I did more harm than good when I was doing them and stopped 2 weeks ago. Hopefully I can find a better way of sorting things.

The problem is the “joined up” one i.e. the physio knows what works when it’s “just” a collar bone and ribs, but the cancer meds throw a completely different spin on things and I don’t think it’s a common spin. But we will work it out. I understand and accept that Teresa and I need to be the experts on me and are being supported by various specialists in their own field.

7:30am, bottom decided to demonstrate its flexibility and “just a quick one” was demanded. All clear so, “whatever bottom, bring it on” 🙂

Been to the Physiotherapist and we agreed that they (and I) need to treat these broken bones as if freshly done and not healed and limit exercise to gentle movements and accept it may take months more than the weeks it usually would. Oh joy.

Have been in a lot of pain in shoulder all morning and got home and Teresa pointed out I hadn’t taken my morning meds (Tramadol and Paracetamol for pain and two different BP pills), they were due at 8am, so no wonder that at 9:45am I’m climbing walls!

Meds

I seem to run on pills and the clock at the moment:

  • 8am – two lots of painkiller and two lots Blood Pressure meds
  • 10am – Cancer pills plus anti-nausea pill
  • 2pm – one lot pain killers
  • 8pm – two lots of painkiller, one lot of Blood Pressure meds and one laxative
  • 2am (yes, I’m usually awake around then) – 1 lot of pain killers
  • Various times anti-nausea chocolate – self medicated as required, yes it REALLY does work.
  • And so, another day and it begins again at 8am.

 

Wow, the TLE1 has landed!

Back when I was building my own studio, I had two little PMC DB1 Speakers and nice sand filled stands. I also had a PMC TLE1 “sub-woofer”. Whilst all my mixers, power amps and effects boxes as well as virtually all of my cables were sold off, the PMC speakers have been knocking about, I just couldn’t sell them. They haven’t been used for pushing 10 years and looking a little sorry for themselves, but they are now all plugged in and sounding wonderful. The Amp (NAD C350) and CD Player (Denon DCD-800) as well as the speakers are all showing signs of old age but are doing better than their owner and working well together and it’s so nice to have them up and playing music.

Music is my other ‘special interest’ alongside computers which is why I love my job so much.

Blah, the CD player has died, probably the drivebelt, easy to sort with the use of two hands. For now, get a replacement and worry about fixing it later

Thu 28th

Faffing and fiddling, otherwise Ok

Fri 29th

A bad night, got to sleep quickly but after 1am, constantly waking up. Lot of shoulder pain probably because overdone it so put on sling to make me rest it.

Music via mp3s till CD player arrives, amazing how much audio the mp3 cuts out when you play on decent audio equipment. I love mp3s but accept their limitations, looking forward to getting the new CD player up and running.

Got Macmillan nurse coming around, apparently, they are not just ’terminal’ care but also ’comfort’ care – i.e. help make side-effects of treatment and the cancer itself more bearable. This is a meet and greet but part of finding the support available.

Hmmm, bottom is fine from a medical point of view but very unpredictable when wants to go, this morning 6am and NOW, not in 5 mins time, however still happy with texture so sticking with laxative so long as only demands once a day

Typing one hand, 1 finger today so very slow and reduced commentary – just too hard to type much and software development minimal. Going to be mostly a day off today.

Postscript

Well, that is the end of Christmas week. We’ve had a good week, it’s been tough on Teresa with so much extra work to do on top of all the stress and worries she has. It hasn’t been easy for me having to ask for help doing such simple things as opening a cardboard box and unpacking my new CD player (NAD C516BEE), never mind making my tea for me. I hate having to ask and when she hears me banging around my office, struggling but managing to do something she is in here like a rocket making sure I’m not overdoing myself. I really do need her to get out and about more to stop me being the centre of her life.

On that basis she is going to some concerts at the Acorn, one of which I really want to go to. Physically I have no idea how I will cope. It’s not till Feb so maybe I will be backing off the pain meds. Pain and falling asleep will be my biggest problems.

As a final thought, whilst my accident was at the end of October, I wonder whether I was the victim of the same statistic?

 

2 Comments

  • Linda Camidge

    Pleased to read of some Christmas successes and pleasures for both of you. And I can confirm that women over 60 do get the nice little testing kit every two years in the post, presumably as routine. And that is all the detail I am going to share 🙂

  • Kate Mole

    It is nice to read that you both had such a successful Christmas, including dinner and presents and being with each other. Such things count for a great deal. And you’ve both got great attitudes too. As usual, I’m very impressed…….

  • Write a Comment

    Your e-mail address will not be published. Required fields are marked *

    This site uses Akismet to reduce spam. Learn how your comment data is processed.