Fed up with this

Was trying to get some sense of reality into an interesting situation.  I complained that the first things Mrs. F. said to me this morning wasn't anything personal - before I'd even got the sleep out of my eyes Mrs. F was complaining about the phone call costs - which eventually turned out to be her calls on behalf of her charity to the Government Tax Line (they nicely have a premium phone call service).  So that's how the morning started and stayed on that all morning.  Now call me insensitive but I did suggest that perhaps she ought to start the morning with some small talk - but she rarely does.


So having now pointed that out to her - it is my fault now.  This is how stupid this stuff gets.  I've got sufficient funds to continue going for around about 16 months.  That's partly the reason I was able to go and try to make the business set up.  So that didn't happen and as I see it, I have 16 months to get a job.  You'd have thought that we would be destitute the way Mrs. F. goes off on one.  It's one of those discussions that don't go well as I go past logic and then go into mocking sarcasm and ridicule for this is what it deserves.  Having many times sat down and calculated the basis of our finances and even discussed selling up and moving every now and then I get this stupid argument that somehow we are about to be moved on to the workhouse.  I have to say that it really is getting to be a pointless conversation and one that I'm pretty tired of addressing every few weeks.


I could do with getting a call this week about the job that might be available as that would, I'm sure,   ensure a quiet life......

Week Ahead

This time next week I'll be Master of my Lodge and all the build up and worry will be out of the way.  I have to learn some words and make sure that I know them all and sort out the procedural stuff.


I will be getting ready to do my first official duty that day as an honoured guest of another Lodge.  I should then be clear until September when it really gets going and there are around about 18 or more meetings to go to as an honoured guest.  I'm looking forward to that very much.


I've started peeling from the sun burn from Saturday - so my forehead looks a bit grizzly at the moment.


Dad is stable and if they can just steady up his insulin and he can gain a bit of appetite maybe he can get some strength back.  I'm hoping that whatever happens he hangs on until after my Installation on Saturday.

Ouch

My poor old head - sunburnt and sore!  I wore a hat today as we went to the pub as they had a live band playing who were excellent.  Had a number of beers - Jubilee - of course and had a good afternoon out.  Not sure Mrs. F. was completely enamoured with the noise so I did spend some time a good few yards away with her.  She and I do differ on these sort of things.


The Jubilee concert was a bit of a disappointing event though - far too middle of the road and too safe, so safe that the artists were a bit past it and couldn't hit the right notes etc.  I think we do this sort of thing well but..... it just could have been so much better....


So there we have it.  On top of that, dad is OK (ish).  He continues to stabilise and I'm happy about that as I'm amazed that he has lasted as long as he has - and I know how utterly bad that sounds.  He just isn't getting better but is stable.  He has no quality of life and that's the annoying thing to me. 


I'm in a funny place at the moment too.  I've just got back in touch with a very old friend and she is now living back in France and occasionally the UK.  She was in Singapore last time we spoke.  I haven't met her since 1988 - a long time ago :-)  We worked together on a global project way back then 24 years ago - I have to say it feels like only 5 years ago.  Why in a funny place?  Well it just doesn't seem to be that long ago and I found it quite a shock!

A Diamond Day Out Indeed

I was "on duty" from 9 am and got off at around 5pm - the weather was bad, very wet in the morning but mid afternoon the sun came out and there's the problem.  I was dressed in a suit and had to be so to meet the Mayor and other dignitaries and hadn't thought to bring sun cream or sun block - why?  Because the weather was meant to be overcast all day.  I have a sun burnt face and the top of my head can hardly be touched!  What a nightmare.


My dad is now under control but the ward where he has been moved to which is meant to be a specialist one is hard pushed to look after the people on it - the other wards were better at caring.  My brother, something of a specialist in this area is writing to the CEO to explain the way things are to him :-)


I've also discovered that at my installation meeting (when I go into the Chair of my Lodge) next Saturday I'm expected to know my obligation and so I am in a minor panic to learn that before then!  Additionally I'm pulling together some stuff for a mate of mine to see if I can get him some sales.  That won't provide a living and so I'm waiting to hear from another ex-colleague about some contract work too.  

Diabetes and Bladder Cancer

This article shows a link between pioglitazone and Bladder Cancer.  It wasn't that fact that startled me it was the next bit  "Just over 10,000 people are diagnosed with bladder cancer every year and almost 5,000 die of it. About half die within five years of diagnosis."


That's not what I recollect at all about the disease as generally it can be treated well and any signs of progression and you can remover the bladder entirely - it just struck me that a 50% 5 year mortality rate was a bit high given the advances made in this.  I'd have thought 20% in 5 years maybe but 50% looks very worrying.  Mind you, the whole article looks to be written to a headline and when you look deeper into the article it starts to unravel a bit and the substance becomes diluted.  The other thing is whether the 5,000 who die of it are related to the 10,000 diagnosed or are they from the 40,000 diagnosed in the 4 years before? 


I'm not sure about the way things are reported any more - this seems to be a very alarming bit of information until you read the caveats and the "science" behind it.  

Upsetting Times

I spoke to mum this morning - not good at all - she was very distressed and so I've asked her to contact my brother who is at home locally to make a few phone calls as they had to leave dad in a lot of pain last night and they aren't sure that the Hospital actually dealt with it.  They seem to be in the right ward but just not have the capacity the last ward had.  The worry is that things are now going on inside him that need pain control and lets hope that they can sort it out and fast.


I can only imagine what it must be like for mum having to go in every day and dad not being well and not being himself and also suffering in front of her - there's only so much you can take of course.  

Strange Place

It was with some purpose that I hit a few beers yesterday and I occasionally do this slight wobble and become ever so slightly self destructive.  It is difficult to explain but it is my pressure valve and there's only so much of my "Spock like" (Star Trek not Psychologist) persona that I can work with at any one time. Somewhere along the line I need to let off steam and relieve my own pent up emotional baggage. 


So just every now and then I do something to extreme.  I always regret it afterwards and I always chastise myself for it but, it is in my very nature and core so I can't actually stop it as far as I know. It is rare that I go off and do these things and can probably number these on one hand in the past 10 years.  I used to be worse before then and often would have a period of self doubt, a bit of drinking or solitude or something like that to try and resolve it.  It's not one of my best traits :-)


I consider that I have a very level attitude to things but to be like that all the time the other stuff, the anger, frustration and reckless side need to come out somewhere - better to go and do this on my own in my own way and regret it for a short while than to explode and take out someone who most likely is an innocent in the whole thing or, as has happened before, I've given a dressing down way over the top to someone who deserved it but perhaps not when I'm at my ferocious best (worst).


Anyway - I need to explode every now and then as you can't keep the calm exterior up and you can't always be matter of fact and logical and business like - sometimes you need to vent and let off steam.  At least that episode has happened now and I can concentrate on going forward now.

Pent Up Anger

I'm angry at a lot of things at the moment whilst also being calm and rationale about them too :-) Confused?  Well that's the way I am, I'm annoyed that something inside me is stopping me making decisions about my life properly.  There are some opportunities taking shape that might allow me to do some work on a part time basis and build some finances back into my business and perhaps allow me to start a few new things.


Something is holding me back and stopping me thinking about these sensibly.  I'm having to write stuff down and rationalise it but I'm not my usual analytical self on this.  There's this back of the mind nagging - not sure why or what it is saying to me but there you go :-)  The Anger bit is because I'm not sure what is holding me back - is it fear, is it not wanting to "go back" - I just don't know at the moment, I imagine that I'll work it out somehow....  Just wish it would work itself out a bit faster as my brain needs to have it sorted ASAP.

Careful - not quite in control

Of myself - I have a tendency to overdo things occasionally - today it was a few beers.  I went into meltdown and just wanted to have an afternoon full of drinking beer.  It was a good day for it, clear and sunny and I had a couple of beers followed by a few more.  I texted Mrs. F. that I was in the pub which was a clear sign that I wanted her to actually be there to stop me and so I could go home.  I know how strange that seems but I did manage to talk to her and "off load" a few of my pent up issues about my dad mainly.


It's one of the strange traits I have - every now and then I have to go out and "purge the devil" as we used to call it.  It is a blatant act of self harm I think :-)  I'm actually not drunk or anything I'm just annoyed that I needed to do it - but it isn't binge drinking - just a safety valve in a way.  

A Little Good News

Dad is on Insulin and they are managing to peg down his blood sugars a bit.  He is doing OK and is brighter and ate a bit more and didn't sleep as much so an improvement.  However, it was stressed that the hospital are only keeping him comfortable at the moment and doing what was necessary to keep him that way.


My news is interesting as one of the old businesses I used to work for suggested that I might like to come and do some work for them again.  That would be interesting as I enjoyed working there before.  I could do this part time or full time permanent or temporary so - I've asked to start discussions.  It may not be exactly what I want but it is something I can do in the short term and see if I feel up to it long term.  It was the job I was in when I was diagnosed.  As my business partner said "As one door closes another one opens... that applies to old doors not just new ones..."


With the 6 years experience I now have I should be able to bring something else to the party now. I am also meeting someone else tomorrow who has an interesting proposition and so things are slowly taking shape.

Change of diet for a short while

I found that I was finding it difficult coming off a cheat day back to the diet and just wasn't eating properly the day following the cheat.  Last week, I actually maintained my weight despite being at my mums and whilst eating healthily I was eating all the wrong things and of course this weekend with a slap up meal on Sunday I wasn't exactly feeling ready to get back to the diet as I just don't feel like eating at all in the mornings.  I've just had a brunch type meal at 11:15 and then decided it was because I ought to.  It is very hot this week and so I don't tend to eat much when it is warm, perhaps that is the reason.  Whatever it is, I am going to eat sensibly this week and then return to the diet in a week or so.

Deciding what to do next

I've been distracted today so one day out of my planning has disappeared.  I have no doubt that I will get interrupted tomorrow as well - it is just one of those things that happen I guess.  I really need to put some serious time into doing some of my accounts and also I need to make some appointments etc.  The trouble is that I am trying to keep things clear in case something happens to my dad.  Of course that rules out just about everything that may happen except 2 key appointments I have to keep.  Everything else will be a matter of people having to live with me not being there for once.

How do I feel?

It is funny that I forgot all about myself being ill last week - except when it came up in conversation and over the weekend I met up with a number of people who remember how ill I was all those years back.  It is strange because I've only very recently started to feel well in myself again after all this time.  I've been looking at my progress and the diet has brought about a smaller and fitter me and I'm not feeling as exhausted or not quite with it.  It is so difficult to put your finger on one thing. It was like talking about my dad's illness.  He just didn't feel right but the changes were so gradual and any symptoms were not easy to see.  Gradually over a long time things changed down to going out, going away on holiday and other imperceptible things.


SO if there is a wellness factor I'd put myself at about 85% at the moment in terms of how I feel about myself and how well I feel inside.  I've still got a fair way to go but I'm feeling just fine at the moment.


I think that the situation with dad is a little strange - I have no experience of what it is like to have one of your parents die and so at the moment whilst I'm resigned to the fact that it is going to happen I haven't really been too overly stressed or phased by things.  They will be what they will be and I suppose I'll just have to tackle it at the time and as it comes.  I think it will be dealing with the living that will be the problem.  I tend to have a view that things will come to pass and that life has run its course and realistically we are all heading to the same fate.  There's no one can cheat this one, no money or anything else will stop the inevitability of it.  It is just what happens to you and the later (sometimes) the better.  When your work here is done, it's time to move on.  I had some interesting chats with my mum.  She has some views that I certainly don't about death and also how people use words.  She objected to her brother's son calling his remains "the body".  I suggested that a body isn't the person, just the shell and outward manifestation and that the "soul" (if I can call it that) and the body combined are the person.  Dad's still dad, his mind is OK but terribly confused at the moment.  He looks 100 and yet he is just 82.  His body is falling apart and that's the problem.  Of course, that is just my view and there are others of course who might argue with that but we deal with it the way we need to.


I'm therefore in an interesting place with how I'm feeling about dad's illness.  In some ways, and PLEASE don't think me wicked or heartless, I'd like him to go to sleep and there be an end to it.  Of course I don't want him dead but neither do I want to see him suffering and being "kept alive" by professionals sworn to uphold life when it really isn't going to benefit him or when it is going to make whatever suffering he has now go on any longer.  In a way that would be better and yet who am I to request it?  I think he would request it too if he could.  I've already accepted what is about to happen and the stress of last week was that I could not assist directly (I'm sure there was some relief to my mum and dad might have been pleased to see me) but it was watching him just lying there, helpless that was more concerning and telling him that I wasn't allowed to move him in and out of bed in case I hurt him.  He didn't get it but if you would have seen him it was obvious that you could easily damage him - he is so frail.


Anyway, the upshot of this is that I'm just waiting to hear how things are and to work on getting back up when called on.  I battle with the feelings of wanting to be there and supporting but, as my mum said, they knew that they were moving away from us and that it wouldn't be possible for me to do that.  I guess that is true and I know I've argued long and hard about that but if I need to forgive myself anything it is that I cannot be there everyday and that I can only do what I can do, my family are here and that's where MY priorities must be.  I often find my brother and sister-in-laws attitude about this laughable in this area as they remind me of all the support they give my parents and yet in this vast country, when they moved, they are 5 minutes walk away!  The making me feel guilty trip is used - I'm not sure it is in a vindictive way - but always makes me laugh as my brother once told me of his wage cut.  He took a wage cut that was the total of my wages for the whole year and at the moment the "Which bit of I haven't earn't anything in 2 years do you not understand?" always makes me chuckle :-)  He was telling me how much he'd spent on equipment for dad (frames, wheelchair, lift and other such stuff).  I think it is "guilt" money, he's bought dad a Guitar, Clarinet and Harmonica and loads of other stuff too.  Why?  It's not as he would have the strength let alone the inclination to play them?  


It will be interesting to see how the relationship progresses.  He has managed to p*ss my mum off too and perhaps just needs to turn on supportive rather than confrontational mode!  I think he is dealing very badly with the whole situation and isn't accepting things for what they are.  Another thing to deal with on my list :-)

Situation Unchanged

Dad was stable and unchanged yesterday - perhaps a bit brighter now that blood sugars are brought down a bit more.  However, the next few days will determine the next steps from here.  


He's been remarkable under the circumstances and despite having an operation to better his quality of life, I don't see that it actually has other than keeping the infections away and he has not been able to do much at all in these 6 months or more.  Thank goodness for TV!  


I guess that I will hear more this week on what is going to happen.  We have the 4 day weekend coming up for the Queen's 60th Diamond Jubilee which now shows how old I am because I remember the 25th when we had a great time :-)  Amazing!


The trouble with that is that I am committed to a meeting on Friday and working at an event on Saturday and we have a street party here on the Monday.  Phew!  Lots going on and the week after doesn't get any better.  

Not bright today

Feel a little wiped out with the journey and the bed side vigil stuff.  Can't say that it was great to go all the way up there and not to meet my brother and sister-in-law at all in the 4 days I was there.  That should, I think, explain volumes about the situation.


So - at home, No.2  daughter has arrived back from University and the house is buzzing once again.  She is the lively one compared to the eldest but the eldest has the more subtle sense of humour.  Anyway, all home and nice to see her and the utter mayhem the house is in :-)


Off to bed now as I have a big day tomorrow for our family lunch and suppose I ought to work out what I am going to say for the presentation.

Good Journey Back and Headache

I know that the headache is stress related - it has been a full on 4 days.  Dad's condition is pretty concerning and he drifts in and out of conciousness and displays all the signs of uncontrolled diabetes.  I'm not sure if that is the way of it in terms of Pancreatic Cancer but I guess it probably is.  We were looking at the problems of getting him home and the key one is strength - he just doesn't have any although yesterday was the best I've seen him for the whole of the four days and he was able to move with assistance and instruction.


I feel very sorry for him because his mind is still there but very mushy and he is in some pain although they are controlling it.  It hurts him to move and that needs a bit more control.  In a way I'm glad I'm home as the monotony of the days and dad's irritability (we all would be in that much distress) hurts those close to him without I suppose him realising it.  No one likes to see their family in pain, wasting away, not eating properly etc.  At least he had a good go at his food and drank a lot more yesterday.  Long may that continue.


I have no idea whether things are good or bad but I do fear that it will not take much to tip the balance to bad given where he is and the knife edge of diabetic control.


Well - I've the headache from hell and I'm looking to do little today except watch the qualifying for the Monaco Grand Prix, listen to the Cricket and have a beer or three.

Preparation for the day

Sat here on the PC just whiling away a while before we prepare to go off to see my dad.  For me this is the last time I'll see him for a while or may be the last time I see him?  That's a concern.  I just don't know how he is getting on and whether this is a short term glitch or not.  


It will be a long day and hopefully he will be a little bit better than yesterday and perhaps they may have gotten his blood sugars under some control.  I'm not the optimist that my mum and brother are about his recovery but we will see, stranger things have happened but he is very very weak.


I am going home later today and I do worry that it may be a call next time that brings me here not a planned trip.  Whatever it is, I do hope that he stops suffering as soon as possible he looks so poorly and so helpless and I've never seen him looking so thin and weak, it just isn't the big powerful man I knew - it's still him but not anything like he has always been.  Doesn't sound right does it - can't explain it in writing at the moment.

Another LONG day

Poor mum she is exhausted but not as exhausted as having dad home - and there's no way he could possibly come home he really cannot move well and needs assistance in and out of bed, he cannot stand and is SO weak it is not nice to see him like this.


He was a bit better today and there was a little bit better colour in his cheeks and face generally and he was a little livelier although not for long.  He certainly has been through the mill and he just can't do anything for himself and after 30 or 40 minutes with us, he has to close his eyes and sleep.  He's just had one thing after another and he's tired and bless him, just fed up with this ongoing stuff.


Trying to rationalise it with him is difficult because you can't talk logic and sense slowly and deliberately when half way through his attention is taken by something else or he just falls asleep.  That's the problem, he wants to know about something but half way through the explanation he is distracted.


My brother needs to "man up" and stop being an arse to my mum or he will get the rough end of my tongue - he's in complete denial and over reacts massively. Anyway, he may get a "bit of a slap" if he continues to lay down the law to my mum as he does at the moment - he's full of medical knowledge but - of course - he's no doctor!  Just because he works at a Hospital doesn't make him an expert on Pancreatic Cancer or Diabetes.   He will be getting the benefit of my wisdom soon if he continues to upset my mum!

Long, long days

It sure is a long day.  We leave here at 1, park around 1:30 and then wander via the coffee shop up to the ward.  That is open in this ward from 2:30 and in the previous one at 2:00 !!  We then stay until around 5, go out for 2 hours and have something to eat and generally sit around and go back between 7:00 and 8:00.  It is easier to stay there than to do the 1 hour round trip here and back.


Dad is generally up and down, they don't know whether he will be fit to return home or not and his blood sugar levels are all over the place.  This means he can be good and bad all within the space of a half hour.  He sleeps a lot which is good (in a way) but the hospital is so noisy and he is often woken up for a test or to check temperature etc.

Another Day in Paradise

I'm absolutely knackered - doing nothing just sitting around all day is tiring as hell.  Dad was good when we arrived - a bit confused but otherwise OK and taking a bit more interest.  A little later when we went back to see him he was very irritable and tired.  His blood sugars were all over the place which wasn't good.  So they gave him some Insulin and he just slept for the last hour.  


They are going to move him, when a bed becomes available, to a local convalescent (and palliative) care hospital, so we just have to wait for that bed.  Local will be good as the journey and the time we are at the Hospital is quite long.