Month: January 2018

Washed and Dressed, Pain Management, Earrings and Birthday – 13-Jan-2018

Washed and Dressed – Sat 13-Jan-2018

I was up early this morning and got 1.5hrs work done before waking Teresa up at 9:15 – she has a habit of snoozing her alarm “off” at the moment and she’s off for a haircut shortly.

I am suffering with nausea more than usual this morning. I took my cancer pills at 10.00 so have to wait another half hour before chocolate. Fingers crossed I don’t get another ‘Saturday sick’ (see last week).

Teresa got the extra ablution implements yesterday and today I washed and dressed myself, including underarms and deodorant. YEAH, first time since 27th October last year, so moving forwards. It was uncomfortable, but I did it.

I can’t dress myself with all my outfits, some are too tight to ease on with one hand, but this is a major step forward for me.

Pain killers:

I’m trying to cut these down, especially the paracetamol which I take rather a lot of. I didn’t take any at 2.00 am and am okay, so I am now trying 500mg four times a day instead of 1000mg four times a day. I am sorer, but not impossibly so and the ribs are not causing much of a problem, I definitely think they have turned a corner.

So, a day of progress and back to work ????

Hmm, got a lot of good work done but at 4.00 pm I hit the wall and retired to bed (the sofa), raised myself for twenty minutes to sort out my tea – nothing special, Sainsburys Chorizo pasta parcels and carbonara sauce plus extra chorizo, it is pasta but it is something I used to use as an emergency meal years ago and felt I could stomach. With the extra Chorizo there is just enough flavour and I can create three meals. I find I need strong flavours these days as the Pazopanib has screwed up my taste buds and most stuff tastes like cardboard!

Anyway, need some easy meals like this so when Teresa is too busy to cook, I can do a quick microwave zap and she can grab what works for her without worrying about me.

So, I crashed and, apart from sitting up for fifteen minutes to eat tea, I stayed crashed

Early rising – Sun 14-Jan

Woke today at 5.00 am feeling alert, so to work to take advantage of it!

I seem to have managed to ease off the paracetamol successfully – i.e. no significant increase in pain. I’m now 500mg four times a day instead of 1000mg – so halved. Once that’s proved itself I will trial backing off the Tramadol from 150mg twice a day to 100mg and see how that goes. I want OFF these pain killers, I hate having to take them and have been taking them far too long in my book!

This is a busy few days for Teresa.

  • She is helping my daughter sort her room out…a far bigger task that it may seem on the surface!
  • She and daughter have to stack the load of logs we had delivered on Friday (and covered in a groundsheet providing protecting from the deluge that was Friday night/Saturday!). My daughter is unable to do any lifting and whilst Teresa does ‘carry’ and thinks of herself as ‘strong like bull’, the truth is, heavy-lifting has always been my job and indeed I moved a lot of heavy stuff around on my own and I’m now useless. I can’t bear having to hand off that job, but I also have to accept my limitations ????
  • Monday: Teresa has to take me to the GP for a blood test (ready for clinic on Wednesday)
  • Tuesday is my Birthday, so lunch at the Gurnards Head followed by my FIRST trip to the North since the trip I missed on Fri 27th October 2017 (day of the accident)
  • Wednesday: The Sunrise Centre (Cancer Clinic at Treliske – Truro) followed by calling into the office on the way home

Teresa does have her own life which shouldn’t have to revolve around transporting me everywhere so, despite my fear of driving, once I’m free of drugs and have either got enough strength in my right arm or got an adapted vehicle, I need to get independently mobile to take some of the pressure off her.

I know there are those of you out there who would help transport me, but that would be stressful for me and right now Teresa wants to be with me for all the clinics.

This is a bad week for me needing her, but we will continue to review.

Yesterday Teresa got a radiator duster (soft, long flat microfibre thing on a stick) which will be great for drying my underarms, better than trying to pull a towel around my left shoulder with my left hand.

I’m looking forwards to getting washed and dressed later on this morning – before Teresa gets up, I hope, so I can surprise her ????.

Scrunchie on a stick for washing on the left, microfibre radiator duster (aka Towel) on the right in glorious yellow.

Vampire session – Mon 15th Jan

Up at 6am, another long night of (lack of) sleep, got myself breakfast, spent some time talking to Teresa, ran out of time, so more of a splash and dash than a proper wash, but I tried that radiator duster and it works well for underarm drying.

The blood test went much better; this time the blood flowed easily, so we suspect the slow flow problem last time was partly down to trauma to the veins from having had so many needles in that one spot over a relatively short time.

Otherwise, I am continuing to do my proper job okay and just getting on with it, clocking up my hours.

I have chosen my birthday outfit –a black top and leggings with a lovely long shirt dress covered in beautiful red flowers, worn over the top, open like a coat. So, despite not liking black, it looks like the combo will work to show off the flowers. There will be pictures ????. The top is from a charity shop and also appeared as a Christmas present, though we chose it in Falmouth back before the accident. The dress is from Yours.

Looking forward to my birthday lunch and my return to the North.

Not quite a full day’s work today as I lost time visiting the Vampires, but I am now “done”. I am leaving the computers testing themselves – looking for lost packets or at looking to see if they lose some packets, sleep, …..

Birthday non-gender specific person – Tue 16-Jan-2018

Whilst I am slowly persuading organisations to stop calling me “Mr Bottomley”, without getting aggressive it, is a slow process, particularly with individuals who are well meaning and don’t understand. So, when I can (and here is one place I can) I try and avoid gender specific ideas – well about me anyway – hence neither birthday boy nor birthday girl, but birthday Bean ????

I woke this morning at 5:30 am to find Facebook telling me there were two posts on my timeline. WHY? I couldn’t think why anyone would, so I checked, thank you Alan Collins and Steve Preston for being the first to wish me happy birthday (mind you, Alan is down Australia way, so has a head start on everyone else) – I had forgotten that today was the day, so the reminder was nice to see as I got up. It was an odd experience because I realised this could easily be the last birthday I have, and that’s a thought that leaves me sobbing as I type. But such is life and death, today will still be a Beanish quiet birthday because I’m no good with loads of excitement and activity, however, this birthday means a lot more to me than previous ones. Funny how your perspective can change when mortality stares you in the face.

Anyway, on a more fun note, Teresa made my “birthday cake” yesterday. Not a cake as such, but almond tarts (well that’s what I call them). It’s been what I’ve had for my birthday for over 50 years. Looking forward to seeing if I can taste them. One of the side-effects of this Pazopanib is to affect taste. It’s pretty random, but some stuff just tastes like cardboard. Yesterday we had venison sausages; I love them, Teresa was saying how they were bursting with gamey flavour and I was saying they tasted like warm cardboard with a hint of “something”.

It is awful cooking for me at the moment! It will be fascinating to see how I cope at the Gurnards Head today, first whether I can stomach anything on the menu, and then whether I can taste it!

I said yesterday I had decided on my outfit, however, not unusually it’s gale force winds out there and a reasonable amount of precipitation, not quite the weather for dressing up, but I think I still will. If my long pencil skirts arrive today, and fit, then I may well wear the black one instead of black leggings – more trapped air, more warmth around the legs. Plus, I might switch to a t-shirt from a camisole. We’ll see.

First job (once Teresa is awake and has had coffee) this morning will be a shower, something I haven’t quite cracked on my own yet. However, I think I can arrange it so Teresa can do what she needs from the shower door and avoid having to be squashed in there with me. Our shower is just big enough for two, but not palatial and usually she ends up cold and damp but not constantly warm from the spray. So, once again, we will see.

Then, the North. It will be very strange returning there as a NON-beer drinker, having half a pint, maybe if I’m there for a couple of hours, two half pints. Instead sticking to J2O’s and cups of tea.

But I will be there equipped for writing, so if I can manage without pain there will be a NEW Letter from the North!

Pain:

I have reduced my Paracetamol consumption, which is all right except when I try to do a load of typing with two hands. Still, I didn’t take any at 2.00 am and am only half an hour from my next Tramadol, so given how sore I am now, I will stop two-handed typing and pop my arm back in its sling.

There is no doubt the pain is getting better. It is happening slowly and so it’s possible to not notice the improvement, but it’s definitely happening. Mind you, try to use my shoulder for anything heavier than an empty mug, or holding my arm out straight (unsupported), and no amount of pain killers will stop the collar bone expressing its opinion on such a frivolous act.

There are some pictures from yesterday which I posted in FB, I’ve popped them in here for anyone who isn’t my “friend” on Facebook

Friends

Being an autistic, I’m not much good at friends either close or social. Being a close friend is very difficult because to be close to me you have to accept and more importantly understand a little of my view of the world and that isn’t easy, as a result my close friends barely reach the number of thumbs on one hand (Teresa). Social friends are even harder, compared to many autistics I’m pretty good at social chit chat but I still find it hard to sustain and so will often just avoid it, I then seem standoffish and then people see no point and it becomes a self-fulfilling prophecy.

I know many of you see these blogs because you are Terresa’s friend (Facebook or Twitter), if she didn’t repost these then they would have a very small audience.

It’s not that I have a problem with friends, but I will rarely initiate and I will struggle to maintain unless I feel, at some level, understood and I have a very good radar for how well people actually understand the strangeness that’s in my head, or at least accept that it’s there and that’s ok and how I behave “socially” is not a problem.

Hmmm, lecture/rant/explanation over, being a “Facebook” friend with me is usually a matter of asking, but don’t wait for me to suggest the idea, I won’t. Beyond that, talk to Teresa, she can explain how hard it is to get beyond that level – not because I make it difficult but because I need to be able to feel safe with you, to be me and even in these blogs you don’t get the raw me, Teresa doesn’t even get it, but she gets more of it than anyone else I know.

Shower

It worked, I did my arm washing at the sink like I do every morning. In the shower I could do my hair, all of my body and legs apart from my back and my right foot.

And now to celebrate

So, at that point I asked Teresa to do my back and foot from the door and all went well. Drying is still beyond me, but that was all she had to do, we continue to move forwards.

The meal was Ok – here’s what I said on FB

At Gurnards head for Birthday lunch. Food not up to par unfortunately. I know my taste buds are all over the place but Teresa wasn’t happy either

Oh well it wasn’t awful and nice to get out even though it’s blowing hard out there

Then onto the North, well an hour’s delay as it was busy at 2:15 pm so returned at 3:15 pm, by now it was quiet, and they seem to have missed me in a “I wonder where he is” sort of way.

At the North. On the table you can see my half pint of Proper Job. So far made it last for an hour so I am getting used to the new minimum alcohol regime. Once my tablet finishes updating I will try and do a Letter from the North

Went home at 6pm and tried some birthday cake (almond tart). As I feared, it doesn’t taste right, not really getting the almond at all, despite the fact that Teresa added extra almond extract to supplement the ground almonds. But it’s nice and it is my proper birthday cake, so thank you, Teresa. So hard for her, she goes to a lot of effort to cook for me and can get an “ok” or “cardboard” and occasionally a “nice”.

Had a bit of something for tea and crashed!

What a day – Wed 17th Jan

Appointment at the Oncology unit today. It’s not a scan results day, so it’s usually just a “chat” session, still just like last time, we have a list of questions.

The appointment is at 11.00 am so we will leave at 9:30 am to allow for traffic into Truro. That means (for me) up at 7 am, start of a long day.

As I do nowadays, I washed and dressed myself (how sad that is something I consider to be an achievement rather than normal). Because we were going out I was aware of how long I take – answer about 50 minutes. That’s a quick wash, deodorant and camisole, dress, knickers, pop socks and leggings plus jewellery (Teresa needs to help me with earrings and necklaces with a clasp). It really should take 15 mins tops and would have done in the past. Never mind, I made it and it’s a shame I forgot to capture a picture as I maintained the floral theme, it just wasn’t in my mind, sorry.

In at 11.00 am, we were shown into the consulting room and were joined by a junior doctor. Pretty much the first thing he said was that he wouldn’t be able to answer any questions. Mmmm, really just gaining experience then? Well that’s OK, but he hasn’t seen or heard anything like us before! Neither of us are nervous or trepidatious by nature, both of us are nettle-graspers. Together we are facing this head-on and need all the information we can lay our hands on.

So, no, the junior doctor couldn’t deal with the questions, but he did go and fetch the consultant for the important ones. The consultant is a lot more adept at working with us, so when I asked him if there was any reason not to have my legs and back waxed the consultant just laughed out loud and said, “of all the questions I could imagine you asking, that wasn’t one of them”.

Of course, he should have expected it

  • Waxing is not unusual in the population. It is often assumed that because some of my records say, “male at birth” and I still have male hormones dominating, I cannot be part of that waxing community (males can for sporting reasons apparently). That assumption misses a whole host of Gender clues, which anyone who knows me, knows are in no doubt with me!
  • I am autistic, I will obsess about rules, so if the rule is “poor healing” and I know that waxing causes minor damage (ripping hair out by the roots is not nothing) albeit something that clears in a day. So, I WILL want to know if it breaks the “be careful” rule or not, why wouldn’t I?

That’s one of the reasons why I feel they (the medical profession) need more understanding of the gender and autistic worlds of adults (as opposed to children) and how they impinge on every conversation you have with them.

I told the consultant I was dialling back the paracetamol and he said that he preferred I left the paracetamol alone – he likes it as a pain killer, he doesn’t like Tramadol – it being an artificial opioid he considers it a ‘dirty drug’ and would rather I dialled that back. So that’s what I’m now doing, the new regime is:

  • 1g Paracetamol three times a day and 1g at 2.00 am if I feel in pain at that time, 500mg if only a bit and none if I’m clear
  • 100mg Tramadol twice a day, down from 150mg.

We’ll see how I get on with that for a week (I have enough 100mg tablets left from when I was last on 100mg) and if it’s working, get the GP to do a prescription at 100mg and see how that goes for a few weeks.

He (the consultant) was also interested in blood pressure. We’ve been keeping a regular log of that and it’s stable and within limits (around 145 over 97-103) so that’s okay. We check BP at 2.00 pm which is during a dip in the blood pressure meds (8.00 am and 8.00 pm) and about the worst it gets across a day.

We then went on to Sainsburys in Truro (just down the road from the hospital) to get food goodies to take into the office to celebrate my Birthday of yesterday. Got some cookies, but no donuts. That’s awful, we will have to pick up some from Asda (down the road from work) – nowhere near as nice, but not taking in donuts would be close to committing the worst social faux pas possible ???? (no, not really, but they are always appreciated)

While there we at Sainsbury’s we popped into the clothes section and they were having a sale. Teresa found a few things she liked, I found quite a few dresses that were size 24s – that’s rare as Sainsburys usually stop at 22. I got three colourful dresses – the new Bean is ALWAYS colour. The boring “professional” smart I used to wear for work are now out. I had already introduced work to Floral Friday when I always wore a floral, blowsy, colourful frock and encouraged everyone else to brighten up too. They rarely did (well, they are mostly men) but they all knew about FF and seemed to enjoy the fact I celebrated it.

Well I now have “Fuck Cancer Floral day” and every day is a FCF day, so out with the drab and in with the colour!!!

It was really fun. Teresa and I taking our selections to the changing room, snaffling the disabled room and both of us in there chatting away, trying on clothes and sharing opinions. It was a really fun time and lifted my day – though I was actually still doing well at that time of day.

On to work. I spent an hour and a half there just delivering goodies and having a bit of a chat around the office. Then back to Sainsburys in Pz for the usual shopping and I managed that without having to give in and go back to the car. As usual I struggle to find “relatively” healthy savoury snacks to keep me going. The vagaries of my taste buds plus the need to eat frequently to keep my weight loss under control (crazy having spent years fighting weight gain, I now fight weight loss!)  means it’s a difficult problem and we keep trying new alternatives. Time will tell, …

And then home. Teresa had eaten in Penryn while I was in the office, so I’d picked up a cottage pie from Sainsburys and when I got home popped it into the oven for half an hour and it worked for my tea. It had some taste but the teeth on the left-hand side of my mouth are being heat sensitive at the moment so it was slow eating, blowing on it and using the RH of my mouth. I then converted the sofa to a bed and by 7.00 pm I crashed out. The alarm woke me for my 8.00 pm pills, I took them and crashed again. I woke a few more times and got up around 6 am.

And now to work …. Thu 18-Jan

Not much to say, I had one of my usual “panic” attacks about having a wash. Nothing to do with the cancer or the broken bones, one of the aspects of autism for me is an extreme dislike of washing, showering, bathing, swimming, …., frequently (but not always) associated with my skin reacting badly afterwards and itching horribly for half an hour or so.

Washing is not usually a problem, but it’s a bit of a palaver at the moment and I’m having to push through the reluctance. Always feel better when done, but I found as many avoidance tactics as I could for over half an hour before it got done.

Otherwise, an almost full day, albeit by late afternoon I was fighting extreme tiredness and stopped around 4:45pm, watched TV sitting up, managed to stay sitting up till after tea at 6:30 and then that was it.

Earrings!!!! – Fri – 19-Jan

Look closely, not shaved since Wednesday morning and all the “stubble” is pure white, invisible except in certain lighting angles – one of the benefits of Pazopanib!

No problem motivating for getting washed today, don’t know why yesterday was such a barrier.

For the first time since the 27th October, I put on my own earrings, YEAH!!!!!

I can “just” stretch my right hand to my left ear (I’ve noticed small increments in movement in that direction over the last week) so I could put in the left hand earring and using a mirror to find the hole I could get in the right hand one using my left hand (Popeye) without assistance from my right (Flipper).

Again, for me, a fantastic triumph. Teresa has hated doing them for me as my ears, having been pierced late in life, are tricky because they haven’t formed “tunnels” that the wire  can go through easily, it’s always a careful wiggle.

Still, sitting here, working, fully washed and dressed – me, ill? No chance. Though the row of pots of pills in the kitchen and scarf/sling around my shoulder may be a tad of a giveaway ????

Another full day’s work but I think I pushed myself too hard because from 5.00 pm onwards I find myself virtually paralysed with exhaustion and feeling very odd. Later in the evening I found myself rather unsteady on my feet. Teresa was worried, I wasn’t, but during the course of our discussion, it occurred to us that it might be to do with reducing the Tramadol. It’s not very addictive but there are withdrawal effects from reducing the dose and “cold turkey” is not recommended.

So, we will see.

Postscript

That for me was a week full of triumphs – albeit small ones but a tremendous load on Teresa and I hate having to ask her for so much, try as I might to reduce the load. I am desperate to do some cooking, but I rarely have the energy after working and often need help moving pans around. It is however one of my goals and I WILL get there.

 

Nausea, normality returning, fatigue and tiredness, washing myself – 6-Jan-2018

Sick on Saturdays, but no poo- 6-Jan-2018

This morning (11am), one hour after taking my cancer pills, I felt more nauseous than normal; as usual, I had some chocolate to try and settle things, this works 99% of the time, but this morning it didn’t kick in quickly enough. I had the common sense to be sitting next to the sink, so no big deal. A lot of thick phlegm and hot flushes but a few minutes later all is well and I feel fine. This was just how it happened the first time at Waitrose in Truro. Now, Teresa is out shopping, but a deal is a deal (I tell her everything), so I texted her what had happened and stressed no need for her to rush home.

The poo department is oscillating, nothing today after yesterday’s enthusiasm so at 9pm took a laxative. Not sure if that was the right thing to do or not, I guess I will find out tomorrow.

Too much poo on Sundays – 7-Jan-2018

Hmmm, swung from nothing to a tad (well somewhat more than a tad) too much. This is tricky and I suspect food (what I eat) and liquid intake (how much) have a strong influence. Think I’ll try and hold off on the laxatives and give that department time to settle. No blood, so I can take the time.

A full day – Mon 8-Jan-2018

It’s been a long day, but a FULL day’s work done, fantastic, done at my own pace, starting at 8am and finishing at 6:30pm I did 7.5hrs work and 3 hours of taking it easy and talking to my wife and daughter (who’s back living with us at the moment). Apart from the nasty stuff going on, I am finding this a very contented life. That said, the pain is horrible, the cancer drug side effects aren’t good and all the tests and waiting for results is horrible, but they have their own box to play in and we try to leave them to do their own thing while we get on with ours!

Is this a sign of normality returning? Tue 9-Jan-2018

Yesterday a full day’s work and this morning it was lovely to see Teresa in the Kitchen sorting out her decorating kit (from the annex – almost done). Last night she went out and I feel I’m starting to get MY Teresa back: for the last 2 months I’ve had “carer” Teresa, ultra-protective, pull up the drawbridge and defend me from the outside world. I’m now starting to see the woman I fell in love with –  obviously I never really stopped doing so, but it’s good seeing her finding herself. I love it. Brings tears to my ears (literally). When editing Teresa asked me if this was me being witty, nope it’s my brain selecting any sense organ in the head and getting the wrong one!

Here I am in my office working away, she is around the house doing her thing, and we are probably in a better place than we ever have been, apart from the broken bones and cancer, but what’s that between friends 🙂

Out and about – Wed 10-Jan-2018

As usual, I still need Teresa’s help to dress, but I am dressed and mobile today 🙂

Still feeling good, got some work done then off to the physiotherapist at West Cornwall Hospital. Teresa dropped me off and went to park, nothing much for the physio to do because the broken collar bone is going nowhere so we need to wait for the CT scan in Feb to be reviewed by the orthopods to see if there is any tissue growth at all. We also confirmed the name of the doctor we saw at the fracture clinic who was so helpful, and also confirmed he had sent his report to the oncologist – joined up care for the broken bones at long last.

Teresa met me at the physio and we then (for the benefit of any locals reading this who know what I’m talking about) walked from the Hospital, down Causeway head to The Honeypot for lunch, then down Market Jew St to the Wharfside and back up again. I then headed back to the top of Causeway head where Teresa brought the car to pick me. I couldn’t handle going to where she had parked – it was a shorter distance to walk, but it was street parking – Teresa is a city-girl at heart! I always struggled with the small spaces people leave you in urban areas – partially due to driving a battleship with no turning circle (poor old Blossom). Also, it’s a narrow road and a bit of faffy driving to get out and the thought of handling other drivers, even as a passenger, had me stressed just thinking about it, so I took the “coward’s” (sensible) way out and walked to an easy place for us to meet up.

Came home, had a cup of tea, felt alright and did some work but at 4:30pm I faded and spent two hours asleep on sofa, had tea and then settled back down by 7:30pm. Although I woke from time to time, I slept for 12 hours. That was only 3 miles or so of walking (first half all downhill, second half all uphill) with a lunch break 1/3 of way through, so clearly I don’t have a lot of stamina and yet I did enjoy my time out. Need to work on that fitness, having been static for 3 months.

Fatigue vs. tired – Thu 11-Jan-2018

Those are my words, this is one of my language weaknesses, for me those two words serve as labels for what I am describing but may not mean that to others, so bear with me please.

Yesterday at 4:40pm it was exhaustion, my brain was working fine, just the body had given up. This morning after 14 hours sleep I am still very tired but I know that’s just the result of almost too much sleep. My brain is functioning and I can and need to push through this tiredness.

Fatigue, on the other hand, is not something you can “push though”, indeed when the cancer and pain meds are colluding and I get fatigued (my word) then my brain struggles with the idea of ideas and no amount of effort will get me moving anywhere, it’s like there’s nobody home, Teresa comments that my face goes blank.

It can be easy to confuse the two states (especially from the outside), which is, I know, something that can complicate the question of something like ME as well as cancer and a whole host of other problems. I know ME (I have one son and numerous friends with it) is a complicated condition, some sufferers can identify when to push and when not and some can’t and hence you find wildly varying opinions on whether it is real or not (I believe it is) and whether some people are letting it dominate their life (some do). Like everything else (cancer included) there is the underlying condition and that is what it is and there’s how you choose to work with it and I know people who handle it very well and some who don’t. We are all individuals and I have no need to comment on anyone else but me, but I would like to point out that illness is never black and white, it is always very specific to the individual and how they cope with it is equally individual.

Anyway, I would stress there is a difference between fatigue and being tired/exhausted – I’ve tried both, and give me exhaustion every time!

This morning Teresa suggested it might help me if I got dressed. For the last 2-3 months I have spent most of the time in my nighty because getting dressed, just for the house, is too painful. It has become a habit, a way of life, and that’s not a healthy place.

The truth is, the pain is getting easier and it would be nice to feel ’normal’, so I did as Teresa suggested. I also took the opportunity to shave my arms. I could only just get above the elbow on the good arm (with bad shoulder limiting movement of my right-hand side) but I got the shaving (and dressing) done.

As usual, I suspect most blokes will not understand why I wanted to shave my arms and why I feel better for it.

Most girls don’t need to shave their arms, but hair removal is something they often do and so they would, I think, understand.

I do feel better, I feel a lot better, and that feeds through emotionally, psychologically, …,

And here I am, though I needed help on my left underarm washing, damn hair under there is so long it needs plaiting – Teresa says I am exaggerating, but it’s a perception thing: I don’t like it, don’t care what anyone else thinks, this is about me feeling good about me, I need to trim that somehow.

I managed to get this t-shirt and dress on by myself, I’m almost normal – well apart from the massive pain killers, limited movement and the cancer, but let’s ignore that for now. I am HAPPY bean

And just to help me remember it’s 10am and this pic is me taking my cancer and anti-nausea pills.

So, another good day’s work but by Budgie time (8pm) I was ready for sleep and away I went 🙂

So near, so far – Fri 12-Jan-2017

Well, this morning

  • I got my nightie off by myself
  • I tried so hard to wash under my left arm, I sort of managed with soap and flannel and finger tips, but it was starting to hurt and I need to be really careful not to damage any tissue build-up around the break as that’s all that will hold me (the collar bone) together (if that), so I had to ask Teresa to rinse and do the deodorant on the left for me
  • I dressed myself in camisole, dress and knickers without help

So, I’m getting there, but not yet arrived. When Teresa is shopping today she is going to look for some sort of “sponge on a stick” either in the “body washing” section or the “kitchen sink, washing up area” of the supermarket to solve the reach problem and, although I prefer roll on, my daughter had the sensible idea of a spray to solve that problem – brilliant. Maybe tomorrow I can be completely self-sufficient. A limited number of clothing items I can do on my own, but it’s a fantastic start 🙂

I am paying the price for pushing things a bit too hard in terms of discomfort in the collar bone, but I don’t think I did any damage (fingers crossed).

You can’t see, but this is being typed two-handed (as it was yesterday as well), the pain is definitely getting easier.I am still on heavy pain killers, but previously they were not as effective as they seem to be now, so I assume the actual pain is decreasing?

Well, by the end of the today I have managed another full day of work. Over 5 days (Mon-Fri) I have done 3.9 days, which leaves me 1.1 days or about 8.5 hours to do over the weekend. One of the big advantages of working from home is that I can work when at my best, take time out for appointments, etc. and make up time over the weekend. In a sense I lose that separation of work and play and that can be a down side, however in my condition it means I can do what works for me, when it works for me, and that is fantastic.

I am in fact just editing this blog on Saturday morning, it’s 7am, but I’m awake, so why not.

Yesterday Teresa picked up:

  • A scrunchie on a stick
  • Aerosol version of my roll on

So, this morning I am planning to get washed and dressed all by myself – more on that next week.

Postscript

It is so easy to get trapped by habit and assumption.

Am I just tired and so can push a bit, or do I have fatigue and it’s dangerous to push?

I don’t need to get dressed, so I spend all day in a nighty.

I can’t reach to wash my left side, so I don’t try and depend on someone else

Sometimes I realise what I’m doing, at other times I need a (loving) nudge from outside, but even with the nudge I need to be willing to think outside of where I am and not let myself get sucked in.

This cancer WILL kill me (eventually), the least I can do is not let it take away from who I am by sitting and letting it get away with it.

So, I will now dress every day, I hope to be able to wash myself. I will try and find a way of showering on my own. I WILL not be dragged down into giving up. And the plain unvarnished truth is that even though I have a positive outlook and push hard to not be sucked in, I was, in part, letting it happen.

Thank you, Teresa, for loving me enough to push me and risk upsetting/hurting/annoying me by suggesting I need to get dressed. I did need to, I do need to and am darned glad I am doing.

The Bean, Pendeen, Fri 12th Jan -2018

Sleep, I never get enough, Teresa the Rock Chick, New Year and bones that will never heal – 30-Dec-2017

Today I thought you might like to see a picture of my work desk (the place where I earn my salary). It is squeezed into one end of the room I was about to re-build when all this blew up, the door on the right is to the kitchen. Don’t be misled, the reverse view reveals just how cramped the space really is. To my left is all the gear for my real job, but I can’t show you that 🙂  

Sat 30-Dec 

Felt like I had a decent night’s sleep and was ready and raring to go (much as I ever am) and yet by 12 I was exhausted. A few gentle hours on the sofa and I managed a bit more; slow and steady seems to be game, and be ready to stop when the body says ‘stop’, but at the same time, don’t let the body rule you. If I did that I’d spend 24hrs laying down, and that’s just not on 

The unexpected rock star – Sun 31-Dec 

Teresa is a rock star. Well, not in the conventional sense but she has girded her loins and hunted in, and dismantled, our ‘chuck in’ shed, found my two speakers stands and rescued them. They are somewhat for the worse due to damp, but they will clean up. I hated having to ask her to do it as it’s heavy work, but she hated the idea of me asking anyone else because she is as independent and bloody-minded as I am, so we agreed that if she would have a go but if she couldn’t manage, she would let me ask. Stubborn as hell (just like her husband) she was not to be beaten. 

All of which means I will release her from editing last weeks’ blog until she’s up for it, much as I want it done NOW! 

Teresa, of course, asked “why” I wanted the speaker stands. She didn’t need the whole “isolation” discussion, so I tried to be as succinct as I could (decoupling sound generators from other surfaces so that the other surfaces don’t vibrate in sympathy and muddy the audio up – that IS succinct 🙂 ). Also, she doesn’t have a wide hearing range and can’t hear half of what I can. My ears are old now and don’t hear anything like as well as they did, but they do still love low frequencies (in moderation, no boom boxes here 🙂 ) and clear midrange 

This morning my 8am meds alarm woke me so my cancer meds (which need an empty stomach) will be 20 mins late, which means as I sit here at 11:15 feeling very nauseous I am longing to get the point where I can have some chocolate to settle my tummy. 

Not a minute too late, the choc doused the flame. 

Bottom department is somewhat mercurial at the moment (but a good brown with no red 🙂 ), yesterday a tad too enthusiastic so I omitted the laxative last night and whilst time was random, things were fine, just a tad “harder” than I would like, so will take one this evening. 

It is such a tricky problem judging at 8pm what you might need to do but won’t know till 5pm (or noon, or 8am, or 10pm …) the next day if you should or shouldn’t. Oh well, … 

It is New Year’s Eve (of course), it’s not something I have ever celebrated but it means a lot to Teresa who always likes a cuddle, a kiss, some ceremonial burning of last year’s mistletoe, and a quick “auld langs syne” so I said she could wake me at 11:55 if I was asleep (and who knows, at the moment) to do her bit. Whilst it is a “nothing” event for me, it matters to her and my sleep is a mess anyway. Midnight is a common time for me to wake and go to the loo anyway, so why not? 

Teresa has been busy working upstairs (writing). She came down at 4:30pm, so I hoisted myself of the sofa where I had been “relaxing” to come through here (to my office) to give her some ‘Teresa time’ in our sitting room, since most of the time it is treated as my sitting room and bedroom. When I can, I try to let her just be her snuggled on her chair doing whatever she wants – often editing hard copy, reading, sometimes TV. 

Whilst I have had some difficult days, at the moment the exhaustion is manageable, the pain is under control and I feel “ok”. I hesitate to say it, because all it needs is a fleck of dust hitting the wrong butterfly’s wings and I’m screwed, but as I have said, I am always happy to say “that was a good day” and today “IS a good day”. 

The day after the night before – Mon 01-Jan 

In case you don’t read FB, here is this morning’s post 

Both my parents made it well into their 80’s and with no family history of “nasties” (well unless you smoke which I never did), so at 62 I really had no great worries about another twenty years. Now I’m told two is more like it, maybe less, maybe more but don’t hold your breath. 

New Year has always been a shoulder shrug event for me, it was just another day. It has always been special for Teresa. Last night we celebrated it in the same low-key way we always have. The difference is that after all the mistletoe was done and Jules Holland had done his thing, I shouted out at the top of my voice ONE. 

That’s one New Year since Diagnosis and I am still here. I want to be here in a years’ time and hear a very loud shout of TWO. 

We have lost too many people in the last year and we will lose more next year. So, I am very pleased to be able to offer a very happy new year to all who are still here and remember those that didn’t make it. 

Bean (aka David) 

p.s. The blog for Christmas week is done but it awaits Teresa’s loving attention and she has her own life and I’m happy to be at the end of that queue, it is on its way. 

2pm – done some useful work,  had sausage rolls for lunch (as we have every day since Christmas) and then I cleaned off the rusty paint from one of the speaker stands and will do the other when Teresa has swapped them. it’s the first real bit of physical work since accident. It puffed me out, but felt good. 

Time to crash – Tue 02-Jan 

Well, I managed some work this morning but I hit lunchtime and crashed! Some more equipment was delivered today – a back support and a “help you get out of bed” thing. The latter really needs a single bed not a sofa or double bed, but the back support is brilliant, replaces a stack of cushions and is much firmer. I find I can sleep better, still uncomfortable, but the pain is not so sharp.  

As soon as we finished lunch I tested the new back support and crashed for 3 hours!  

I find I have to work when I feel alert, rest when I don’t and just faff about when somewhere in between. It is absolutely a case of “listen to your body”. If I was in the office it would be hard to crash for a few hours (especially if driving!!!) but working from home I find I can pace myself and still do my hours. 

Pockling along – Wed 03-Jan 

A good night’s sleep especially since I dropped off during Teresa’s TV time (post 8pm). So, right now I feel ok. 

The fracture clinic – Thu 04-Jan 

Off to the fracture clinic today, we are both determined to get better information on the healing progress, and then off to the office before returning home. 

Hmm, first I struggled out of bed and felt awful, worst I’ve felt in the morning for ages, what a great start after thinking we’d turned a corner. 

But off we went, and Teresa tells me I was more chatty on the journey than usual and I must say by then I felt better, so maybe this is a good day. 

Got a different doctor in the fracture clinic and he seemed a lot more on the ball and had read all the cancer clinic’s notes. 

Bad news – Collar bone not healed at all, no bone growth, nothing. It won’t heal now without surgery (plates, bone graft, etc.) and no point doing that while on meds that inhibit healing. So, the best I can hope for is that enough scar tissue develops to stop the pain (from movement in the break). Standard X-Rays don’t show soft tissue (including scar tissue) so he didn’t know if this was happening. Fortunately, I will be getting a full CT scan next month (for the cancer) but that will also provide the orthopods with information on soft tissue growth in the collar bone area (CT scans DO show soft tissue) 

The ribs look like there is some bone growth, but hopefully the CT scan will also tell us more. 

So, the news never gets better, fingers crossed that at the end of Feb we will get some good news i.e. that the Pazopanib treatment is working and the mets have stopped growing (to hear they are shrinking would be tremendous) and that no more have appeared. But that’s another 6 weeks yet, so patience is needed. 

Whilst on the subject of shrinkage, for years I’ve had a wart on my forefinger. Doctors have tried to remove it, but it always comes back. Latterly it had got quite large (Teresa and I have debated this and would say it was somewhere between the size of a pea and a broad bean!). Now, suddenly it seems to be dying and is almost gone. Is this the result of the Pazopanib? Does it mean the same thing is happening to my mets? Who knows, this whole thing requires a delicate balance between hanging onto a thread of hope and being realistic! 

Back to the Fracture Clinic, we must have been with this particular doctor for 45 mins discussing the situation and it all felt much more “joined up” than our last visit before Christmas. 

So, I felt fine and alert and we were both upbeat because we felt the bones and cancer were being considered together by the bones people; next we need to get the cancer people to do the same. I asked the bones man to make sure his report was sent to the cancer people (apparently bones department can see cancer reports, but cancer department can’t see bones report). Oh well, paperwork, still Teresa and I are in charge and being reasonable and aware seems to help join up gaps in the system. 

Next we headed over to Penryn and the office. I continued to feel good and spent a couple of hours there reviewing the medical side with personnel – it’s important they know where things are so they can help, if I don’t tell them they can’t help, seems reasonable to me. 

Then we reviewed the work I’m doing at home with the team and it was good to feel part of the team, even if for just a couple of hours. It is amazing the lift I get from seeing them. As an autistic, it is really weird to hear myself saying that being with people is good. In the past, whilst I have always liked being with people, I have never coped with it very well. Maybe because this has a focus (work), but I never leave the office thinking “thank goodness, I can now escape”, it is ALWAYS with regret! 

So, left office and on to Sainsburys. I am still alert and interested, in the past I would have zoned out for the journey home. At Sainsburys in Penzance I began to flag and by the end of our shopping I had no idea what I was doing. Even so, I stuck with Teresa till we were done, then left her to do the checkout and went to sit in the car. I was moving very slowly and in pain (my 2pm pain killers were prob half an hour overdue. I took them when I got to the car, and we drove home. I collapsed on the sofa (sitting not lying) and after half an hour or so of “dead” time, I picked up and was alert for the rest of the afternoon/evening. This is a first, it almost seems that, if I can get enough sleep the night before and take care, I am reaching the point where a full day is very possible 

I achieved more than I thought – Fri 05-Jan 

Hmm, well today was “recovery day”, that much is familiar and I rested and “socialised” with Teresa, but I crashed Friday evening and had a good night’s sleep; Saturday will follow in next week’s report (but it was the best day for ages, to avoid too much suspense 🙂 ). 

On reflection, Friday wasn’t entirely a recovery day. I disconnected all my audio and got Teresa to lay down the speaker stands and then, while she started taking down Christmas decorations, I fitted spikes to the speaker stands, she then came back, moved the stands and then speakers 

 

I now have the arrangement I wanted, the gap between left and right is, at best, six feet; the distance from my sitting position (see picture at the head of this letter) is not much more. But it’s the best I can hope for in this limited space. 

  • Yes, the grill cloth on the front of the DB1’s is coming loose, I just need to re-glue it where the glue has aged and given up 
  • Yes, those bits of wood to the right of the glass door are part of the old frame (mouldings) plus part of the new frame for the new doors, I got this far before the accident. 
  • The TLE1 is the PC like box between the two speaker stands 
  • This is the view if I swivel my office chair 180 degrees (see picture at the top of this blog), it’s really cosy in here. 
  • To my right in this shot are an 8×4 foot sheet of plasterboard, 6 sheets of plasterboard, CD cases (like book cases) and other timber awaiting the “new” (but abandoned) building work. 

After that, I was exhausted, but after a leisurely lunch I returned to my office and reconnected all the cables and got everything working again. A very happy Bean, and I spent some time listening to music and just “faffing”, only finishing at 6:30pm in time for tea. 

At some point I helped Teresa take down the Christmas tree lights and then get the tree out of its stand so she could put it out for recycling. 

So, whilst it was a “down” day in work terms, it was not a wasted day and hence I consider it is still part of this upward curve I am feeling. 

Postscript 

It is frustrating that as soon as I start to feel better, more human, more me, then I worry that maybe the cancer drugs have stopped working and actually I am getting more ill, I just can’t tell. That’s part of the hateful thing about this cancer, it is silent and deadly, you get little in the way of better/worse unless it is extreme, life challenging bad news.  

I find I have to keep a small part of me, isolated and well-hidden, where I put all my optimism and hope, so I can dip into it when I feel really down, but otherwise keep it well protected from the vicissitudes of day to day coping with the broken bones and cancer and Teresa and my emotional rollercoasters as our life continues to be torn up and re-arranged in ways we’d rather it wasn’t. 

One of the few things we are able to keep out there and upfront is the enjoyment of our love for each other. It is a delight and pleasure, especially for me as an autistic that the cancer is so grim and ‘in your face,’ that I NEVER forget to show my love to Teresa. It has always been there, but I have often forgotten to show it. This cancer has been brilliant in providing a constant reminder so I can constantly show how I feel and see how much that means to Teresa. That’s one piece of “hope” that doesn’t need to be hidden, but celebrated every time the cancer and accident try to pull us down. 

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?