Letter from the North

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.

 

2 Comments

  • VIctoria Osborne-Broad

    I don’t want to write a long essay so won’t put comments on everything. Just that it’s excellent that you are able to cut down on the pain killers, whichever of them it ends up as. That’s really an achievement. Also, it’s good to get all this information. Other people ask me how you are, so I can give them some news (not every detail!). Look forward to the next instalment next week.

  • Kate Mole

    Dear Bean,
    It is great to read about your achievements. Washing and dressing seem unimportant until you can’t do them, and then they become much more significant….. congratulations on getting on top of all this, and on the reductions in the drug regimen as well.
    Do not worry too much about the sense of humour of hospital consultants – that’s the way they are, and with everybody.
    Your blog is very inspiring and I am happy to see it.
    Very best wishes,
    Kate.

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