The Saturn V, almost as good as a pussy cat!
[EDITORS NOTE] FFS stop faffing with things, WordPress editor was fine for adding links, this recent version fights me every inch of the way in its new fangled editor and won’t let me go back to the one that works. FFS.
If FFS is not clear, try For F***CKS Sake. Change for changes sake is not always better.
What’s wrong with Valves instead of these new fangled transistors I ask? For those of you too young to understand “transistor”, they replaced valves before blossoming into the “chips” all you young folk like. Me, I love computers, but nowt beats a good Valve, especially in Audio, so there!
Any funnies in the editing cannot be my fault at the moment, it’s the stupid technology’s fault, honest it is!
We had a delivery of logs due this morning (for the newly re-roofed wood store). We realised we could (and should) have paid for it later and gone out early, instead we didn’t get out till 10am. BAD move on one of the busiest days before Christmas!.
What can I say, no disabled parking free at Sainsburys, REALLY, all those disabled people desperate to go shopping in more volume than any other time of the year? We had to unload the buggy (so I could handle the store) in a normal parking slot , not trivial in a stupid manic car park with no disabled slots to help, so unloading into the moving traffic! I was amazed how many people scuttling about at speed seemed to be using a disabled badge – they couldn’t ALL be invisibly disabled could they?
We got home 1:30pm ish, grabbed some lunch, I was exhausted, could not settle till gone 2.30pm, what sleep I did get was poor.
When we got home, in the post was my scan report from the Cancer nurse (that wasn’t available at clinic last Wednesday), basically it is OK, and though I do need to clarify some stuff, from my reading, I got:
- The shoulder met seems smaller – since this was the largest and it keeps getting smaller, good news.
- Some nodes are unchanged, ok
- Some nodes are larger, however a note from cancer nurse says these are fluid filled (and hence being damaged by the drugs) so should shrink back at the next scan – “no need to worry”
- Right upper lung “stuff” is reduced – good news, if they could be clear about what exactly it was/is!
- No new lung stuff (as opposed to what the consultant thought), so maybe lower lungs are ok?
- No other nasties lurking (or at least seen 🙂 )
- Because Haemoglobin is high, again, I go to have a pint of blood drained to dilute things at the end of January!
Curry this evening, straight through diarreah hit, and after 3 bouts I took “blocker” drugs (Loperamide), as usual I was wiped out, diarreah does that!
Got in some logs, went back to Sainsburys for stuff Teresa was missing after yesterday. Tesco opened at 10am so I went there first but no glycerine (the most important missing item) so got that at Sainsburys. Again, parking was crazy even before 11am (when it opened), all disabled slots bar two were full and even as I pulled into one,I saw someone pull into the other (next to me) with no blue badge at all and run into the store, hard not to wonder if some of those cars were able-bodied people with the disabled person still at home in bed! People wouldn’t abuse the system for their own convenience, would they?
Had my nap upstairs so Teresa could make a noise in the kitchen/wrap presents, up at 4pm, daughter arrives and lot of nattering, more curry, another load of diarreah, …
Up at the crack (5:45am) and at the butchers at 7am to collect the turkey and stuff. Back by 7:30am, even in the pea soup fog.
Started making sausage rolls, a Christmas tradition dating back into my childhood – some nine rolls of ready rolled puff pastry and 8 ‘tubes’ of sausage meat making some 146 sausage rolls. It was a marathon of a job and totally knocked me out, I didn’t finish and have lunch till gone 1.30pm – much too late for me. Nap upstairs again and crashed.
These upstairs naps will become relevant later in the week as I can only lay on my left shoulder in the bed (without the back of the sofa for support).
After coming downstairs, it took over an hour to come around and by 5pm (ish) I was finishing some wrapping – mine was done beforehand but Teresa hadn’t had time to wrap daughters stocking plus there were a few outliers.
Got that done and tea closer to 7:40pm (than my preferred 6:30pm), again much too late and yup poo, but this time only the once, although that was “enthusiastic and prolific”
Up at 7am, readybrek for breakfast and drugs at 7:30am so no sausage rolls till 10:30 am.
I am totally mucking up today as my life is so driven by drugs, fatigue and the need for rest. So, at this time when they are all still in bed, this is what I expect to happen:
- I was up at early (for me) and had my usual breakfast, cup of tea and the first drugs (blood pressure and nausea). Now a 2hr wait for second batch (cancer)
- Prepare the sprouts (traditional – even last year with broken bones and SLOWLY!). As always, a debate – cross the tops or not, no choice, cross!
- Around 9am (ish) Teresa and daughter will appear and we will open stockings
- 10.30ish (for me, maybe 10am for Teresa) it’s sausage rolls and sloe gin fizz for everyone (just a splash for me)
- 12 to 12.30 I head up for my nap (hopefully the last upstairs so they can sort things without disturbing me), Teresa finishes her cooking prep
- 3pm or so I reappear (rested we hope) and 4pm for Christmas dinner and following that main presents.
I hate mucking up the normal timing (being autistic such things matter a lot to me even if others may be more chilled) and not being able to help Teresa much. That is why I over did myself on the shopping on Saturday, going in Sunday morning, doing the meat run early yesterday and then sausage rolls, …, just to contribute a bit.
There have been all sorts of other minor jobs like fridge stuffing, bird stuffing, …
Well, that’s pretty much how it was except the dinner was about an hour late – not bad and Teresa was totally relaxed, so a good day
The first two sausage rolls were nice, the second two were cardboard (same ones from same oven). We were told by the dietician that with taste it’s possible for the taste buds to get saturated and stop working and then recover. Do my “sausage roll” taste buds only last 10 minutes before burn out, will find out tomorrow if a) they have recovered and b) if I can enjoy all 4 rolls for lunch?
I had my afternoon nap and Christmas dinner went really well, I didn’t eat a lot, but enjoyed what I did. Teresa surpassed herself (as usual) in the catering department. She has really got the laid-back Xmas dinner cooking down to a T
After I woke up, I stayed out of things – least stress for me but managed a poo call just as they were bringing food to the table – thanks body!
It wasn’t the planned 4pm, more like sometime after 5pm I think, but who cares, …
After that presents, I barely made it through that I was so exhausted, why on earth is opening presents so tiring, all I did was sit there!
Oh well, I already had requested my “main” present (a Lego Saturn V rocket, …, if you don’t understand, I can’t explain, I remember Apollo, I was 14 at the time, a formative period in my life), but there were lots of other bits arrived including a couple of “poo” cushions.
I tried to post on Facebook about the poo cushions about how chuffed I was with both but I seem to have failed to communicate that and am left feeling that I completely blew it and caused offence/confusion.
I HATE the social world, I am here at 1:25am on boxing day because I am so upset, I cannot sleep.
Why is it so impossible for me to really understand how the social world works and how to say things, especially the online one when I cannot judge as I go along and easily ask questions. I know I often fake it OK, but this evening proved I really have no idea what I am doing, it leaves me just wanting to turn a switch and disconnect form the world.
Over reaction, well try walking in my shoes for the last 60 odd years, failing to understand how the world around you works AND the world around you not understanding how you work, BUT, it’s only you that realises it or does anything about it.
Awful as the cancer is, for me, it is not as devastating a part of my life as being autistic in a neurotypical world.
Oh well, shit (sorry) happens and hopefully if I get tired enough, I will crash before morning and eventually (days, weeks, …) the memory goes into the background to come back and make me cringe as memories still do of all my faux pas from the earliest parts of my childhood to today, arriving unbidden and unwanted at the oddest of times.
Well, since I’m here I’ll try and release last week’s blog that got caught up in the busyness and exhaustion of leading up to Xmas (see earlier)
Blog released, goodness knows in what state. It was “almost” ready but I’m not really in a sensible frame of mind to have any sensible judgement as to how well edited it was, oh well it’s gone and I need to find something else to distract me until I totally crash out 🙁
Such a shame that a brilliant day as Christmas day was marred, at least it was after Teresa and daughter gone to bed, so they are unaffected, marred by my stupidity so that all I have left of the day in my memory feels awful.
I did eventually crash and in the cold light of day I have checked what I wrote las night and not changed it, it reflects how I did feel and still do 🙁 . Teresa tells me (nicely) I am reading things all the wrong way, but that’s really the point, I don’t know how to read them any differently.
Anyway, whilst not getting anything really done (that assignment is still waiting) boxing day has passed quietly
Sausage rolls for lunch, I can taste the meat (just, even though it’s packed with flavour according to others) but the pastry, it tastes awful, cardboard with fat – yuck, these screwed up taste buds are manageable but also horrible when they take away from you some of your favourite flavours. Still I am getting back some taste for fish, so maybe sausage roils will recover?
Started building Teresa’s (cold) seed frame (Christmas present)
Tea is looming (reheated xmas dinner so xmas dinner for a second day – I love it), uWave is perfect for me. Teresa and daughter are fussier and like things heated in the oven, …, me I don’t care. My plate looks a lot fuller than yesterday, so I may need to pare down what I eat, but, …
Yup, half the tea disappeared into a Tupperware and will reappear tomorrow!
Finished building Teresa’s (cold) seed frame (Christmas present) and it is now outside.
Another barely getting anything done today, tea tonight was mainly what I hadn’t had yesterday which was mostly veg (sprouts) and potatoe (which I know is harmless to my digestive track). I had been worried about the sprouts for Xmas day but was fine, clearly today, I had passed some threshold because, …, oh boy, two bad sessions in the space of 15 mins and a third about half an hour later. Two loads of Loperamide to try and slow it down, which the second did. I feel really rough
Well, a rubbish night, I was mega tired but from about 1:30am, sleep was poor. I am having difficulty with both my shoulders which forces me to sleep on my back which is never good, it was still 7:30am before I got out of bed but all I want to do is get back in again 🙁
The right shoulder (the one that was damaged in the accident) is always problematical, but the strain of sleeping on the left, especially on the bed seems to have caused difficulty (pain) from shoulder blade all the way down to the below the elbow. So, I have to try and sleep on my back, about the worst position for me.
I have managed to get started on my assignment, only a couple of hours, but I’ve managed, all I now need to do is sustain it.
Tried cutting up my sausage rolls, as we had to do last year for me to eat left handed and adding a dash of Lea & Perrins and that worked wonders.
Another useless nap time, barely slept but we then went to visit friends this afternoon and had a wonderful time, lots of discussion on the joys of kidney cancer, both husbands have it, and though our experiences are very different, as are our treatments, the lived experience of couples dealing with it are not really any different. It was so nice to spend time with people who just “get it”. The best bit of Christmas for me, thank you both (I know one of you will read this and I hope pass it on)
Two thoughts, the first is that nobody knows how anyone else is coping or what they are going through. Most people don’t say as much as I do, and even with my poo obsession, I don’t bother you with all of the other crap, shoulder pain, back pain, neck pain, headaches, nausea (unless it’s noticeably bad), stomach and leg cramps, hip pain, ankle pain, … I think it’s a shame we aren’t more open because it can help someone not feel they are alone in what they are going through.
We (Teresa and I) have learnt that we are the best doctors for my health and it is our responsibility to treat me, manage symptoms, the disease and the treatment. Yes, of course, the NHS contributes to that and yes, they have the heroic drugs, machinery and experts, but yet, they are the supporting cast, it is Teresa and I, and in the end, ME, that needs to manage my health, to make sure that the professionals do what I need them to do, whether they want to or not. At times that means shouting loudly and making a damned nuisance of yourself, at others a quiet voice demonstrating that I don’t expect them to “fix me, but could they do this for me please (nine times out of ten, they just do it without a problem).
We have rarely had to shout, sometimes had to be firm, but ALWAYS we had to be the ones in charge and there to be no doubt about that in our minds or the professionals.
It’s tough when you are ill (terminally or not) and just want “someone” else to look after you, but our lives are our own and it’s down to us to manage them. It’s a tough lesson to learn and a tough thing to do, but it is, we believe, the only way to get the best out of the very limited resources available to us via the NHS.
The second thought is that it is hard to describe how much the fatigue gets in the way, I can get ONE thing done a day and I don’t get many hours for that. That one thing INCLUDES rest (outside of naps), so a chill out day does not include doing anything – even building my Lego Saturn V Rocket (Christmas present) which I very much want to do. Right now, I have an assignment, my Christmas rocket, some music to record AND some chill time to fit into the next 10 days, it is overwhelming!
The hospital may be pleased with how well I tolerate the max dose of Paz (800mg) after a year on it, and it is having a good effect, but god it is tougher than you can imagine. Worst you can’t see, on the outside it is invisible 🙁
As for “is this my last Christmas” you may consider me a bit of a depressive when the signs are better than last year, but I know the cancer is not giving up, it has many avenues of attack and nobody can know whether I will survive another 5 weeks, 5 months or indeed 5 years. I do know it will not get easier and quite likely harder and I won’t really know until I get close to the end and that scares me, I can’t be chilled about dying, I can be realistic and do all I can to put it off, but I can’t say “yeah, I’ll ignore it till it happens”, it’s just not me.
Maybe this helps?
If I (others will be different) decide that all is OK and I will be fine for next Christmas, then I stop keeping an eye on what is happening to my body, I abdicate responsibility for manging the disease and catching things before they become a problem. I end up failing to take care of myself. By remembering the stakes involved it helps me stay motivated in managing my condition as well as I can to give me the best chance of being here for next Christmas. It also helps me in not putting things off, so that Terresa and I can enjoy them today, because there might not be a tomorrow to enjoy them!
And with that thought, a happy New Year to one and all and may all your poo be firm but not solid, that joyous middle ground between constipation and diarreah that you never appreciate, until that is, it is no longer part of your life 🙂
The Bean, Pendeen, 31–Dec-2018