A Wet Weekend

The third wash out in a row.  Crazy but there you go - it just means that the chances to get out are severely reduced and that I'll be stuck in the house.  I do need to get to the local Chemist and get my prescriptions for my blood pressure.  Interestingly enough my blood pressure remains normal or below these days.  A couple of stone off my weight and healthier food appear to be doing wonders.  I need to schedule in exercise I think too again now.  I haven't had (touches wood) any back problems for about 2 months and so once again think that getting the weight off has helped this.  


When I start exercising though, I will take it easy this time.  I may try the short burst exercises rather than the long 30 and 40 minutes sessions that I used to do.  I have all the stuff I need to do this.  I just need to change discipline to do it.  


I'm the sort of person that needs a catalyst or scene change to go and do the next thing.  I'm drifting along at the moment not certain quite what to do for the best.  Ideally, I would go and help some people getting their businesses setup and get some sort of reward for doing that but something isn't clicking at the moment.  I kind of need a change in routine to happen and I also have got to working the highs and lows of my current situation from all angles.  I think too deep someone told me once (probably more than once).  I do a lot of analysis before I do things and it is why I work well when doing strategy and planning work - that's the way my mind is constructed.  I'm planning our bathroom at the moment and what work will be needed.  I know what sequence the work will take, how long, what materials I will need and so on right down to the number of screws and plumbing fittings required.  Some call that "anal" but in truth, I know exactly what I need to do to build the bathroom.  The critical task is the plasterer who has to come in when everything is clear for him.  After that has dried out I know day to day what I'm doing.....


I realise life isn't quite like that but you need to have a plan.  I have a plan - I just haven't filled it in yet :-)  The mindmap (spider diagram) that I've drawn up is now some 15 sheets long and growing.  Perhaps I'll spend some more time this weekend just sorting that out.

What Weekend

Mrs. F. off early tomorrow to collect L from Cambridge and bring her back - gosh her first year at Uni has gone quickly.  A is off to University to tend her exhibit.  She has to go in early on Monday too.  So I'll be "home alone" once again.  I don't mind too much and it will be nice later on when L arrives - that will liven the place up :-)  She's as crazy as a Box of Frogs or a Barrel load of Monkeys :-) but she makes me laugh as she is so funny.


So a quiet day tomorrow and I might just spend a bit of time practising the piano - I ought to do that!   

Homecoming

Spoke to my mum and she was in two minds about dad coming home but, surprised as I am, I can see the logic in at least trying to achieve that.  The sheer logistics of it are surprising as there will need to be daily visits by the district nurse, various carers and others, a bed is to be provided and all the other equipment needed to look after him.  There's training in how to roll and move dad without hurting him or mum in the process.  


It will be nice if it can happen as dad can see the fields out the back and part of the garden and see out the front too.  That's an improvement on seeing the tops of trees and the sky (if you are lucky) in the Hospital.  It will be peaceful and tranquil and it will after all be home - and home is a secure place to be.  My brother and sister-in-law are 5 minutes away and that too makes it better - at the moment the 30 minutes there and back journey and the waiting around all make for a rough time for my mum.


Well it will be nice if we can get him home I suppose and if that doesn't work then it will be a nursing home and as a further fall back there is the Hospice too.


At last things are moving, seeing dad in that dreadful place was just terrible, he looked so lost and weak and very un dad like...  Father's Day on Sunday so he will have my card which I sent off early.. 

Friends and wetting yourself with laughter

If I were to tell you that some of my friends - whether by design or not - have contributed to my well being by relentlessly taking the piss out of me you may not believe it but actually, that's what happens a lot!  By this I mean that I am very happy for people to take the rise (piss) out of me as long as we all laugh about it and it IS funny.  It mustn't be nasty but it can be black humour and it can be quite withering.


We met up briefly on Tuesday as I came back from one of my meetings but tonight we met up at my local and there was a quiz on - which is always a ball of laughs.  We are - as I describe my daughter - as sensible as a box of frogs!!  We got some real belly laughs out of the audience by answering the questions wrongly.  The best one "Who is buried under Kings Cross Station" - answer is Boadicea - we yelled out was "The Northern Line" which is the underground tube line....  Well it got a muted laugh.


Quiz nights are all about having a good laugh and enjoying the company of the people there.  We did that - it took some pressure off me tonight as I've heard some more about my dad and it is "good" news in that - contrary to my belief they want him to come home - which is the best place in reality but I was never sure that they could - as Jean Luc Picard says "make it so".  They can indeed provide the equipment and the personnel to do this.  In many ways this is what we have been trying for months to find out.  I think that dad would be "happy to die at home" and that mum would be "happy to nurse him" there too.  Given the proper levels of support that may be a much better thing than him being in a home or a hospice.  


I'm surprised that this is an option but I will be very happy if it does come about and that dad can be at home until "the end", it will be much better than where he is now - we all hate it, it is not where dad should be.  It is becoming upsetting to me now.  Dad looks like someone who lived through Belsen and you just know what the outcome is going to be.  for the moment my own life is on hold as I come to terms with his situation and also my own.  The issue being here that all my friends from school, who I was out with tonight, had their fathers die on them over the past 6 years.  One was sudden, one was quick and one was expected and they are very good to me as they understand the problems I have (as a cancer survivor) to see my father going through the final stages in his life in front of my eyes.  At one time I foresaw this happening to me.  It is distressing and only in the last few days have I actually felt emotional about it.  


Last night I read the Marie Curie Nurses web site and the end of life piece and although I know what is going to happen I did have a very solemn moment - reflecting on what it meant to us all.  I see that the person dying in some ways fades away but it is the knowledge that I may not be there at the end that somehow nags at me.  I may explain this later on - it is to do with the "abuse" my mother took at her mother's funeral and how my brother and I turned out to be a little bit like the Kray Twins that day and a bunch of remote family were given a stark choice.  No one ever makes my mother cry with ugly words.  Hell I could have broken bones that day and I'm the quiet one.  However whenever I get near these people, even today, they get the hell out of my way :-)  You can upset me but not my family - ever.  Not sure I'm quite Joe Pesci in Goodfellas but you can imagine my brother and I in that situation.  Funny I should think of that at this time!


I feel that I need to go up next week to spend some time with my mum.  I feel a bit of a fraud as I never felt dad would be allowed home but if that's what is going to happen then I'm pleased.  I'm happy that he may be allowed to spend his last days with my mum and in his own house.  I was beginning to hate the way he was being de-humanised by "the system" where he was.  I hope that he gets home and finds some peace there.

The Future

The recent "disturbance in the Force" :-) for want of a better phrase includes my dad, obviously, many meetings and outings which messed up my diet and of course closing down the business and trying to decide what to do next.  At the moment I'm trying to get some focus on this as things need to be sorted.


I'm trying to weigh up all the things I want to do and realise that there are some great opportunities out there and some exciting things to do but I mustn't give in to making a rash decision and jumping before I've thought this through.  Many have told me to go back into the charity sector but I'm not sure I'd go back to my previous employers - it would be too easy and anyway, my successor is, as I'm certain he would, doing a great job and bringing the enthusiasm of youth to bear on the role.  I may make a few calls to the CEOs and see what they think about me taking a Director level role in a Charity - I would imagine that would suit as it wouldn't be business as usual and it would allow me to use my experience etc.  Of course that's just one thing on the cards.


My diet is OK at the moment although I'm neither on one thing or the other.  I'm eating sensibly interspersed with the odd big meal and beer - but I wouldn't mind some settling back into my slow carb diet.  I haven't put any weight on in the past 3 weeks since I stopped following it to the letter.  I really had no chance of following it but I'm eating roughly the same things and just not over doing any of the stuff that will set me back onto weight gain.


I feel a bit faddy having got the juicer and the slow carb diets going and then stopped them but I will get back onto more healthy eating to a strict diet when things settle down a bit.  I did manage to get some FOCC this morning for the first time in ages.  

Thinking About - Quality of Life

I wonder whether there's a point where the QOL argument and keeping someone alive because  of your oath causes the sort of problems we - along with many others must face.  I think that sometimes I want dad to go to sleep and to not wake up for his sake as well as my mums.  I do find that everyone suffers.  You suffer seeing your father/husband just deteriorating in front of your eyes.  It isn't the person you know - he looks like him - a very thin and drawn - perhaps frightened version.  It isn't how I'd want to remember him and when you hear that cliché that "it was a release" I can now understand that sentiment.  


The family too becomes stressed out and to see someone you love in pain, losing weight, unable to help themselves, completely reliant on others really isn't nice at all.  I do feel that - loss of dignity - is something that I'd find difficult myself to live with and I think that dad is bearing up well on that front.  


You can see why assisted death would be an option for some people as in reality we didn't expect things to be like this and we really expected things to be a little more peaceful and certainly not to end like this in a bed, unable to move, fighting infection and diabetes and many other things.  Somehow, the shock of sudden death may be more acceptable, more painful perhaps but at least it wouldn't be this long drawn out process for him and us.


I do feel so sorry for him and for mum.  I'm sort of distanced from it and also don't have the day-to-day agony of it but somehow I wish it is concluded quickly for both their sakes.  It isn't going to be nice it isn't great now though so perhaps it would be the fairest way out.  But as my dad often told me "Life's not fair boy" :-) 

Preparing to go up again

It is now 4 weeks since dad went into Hospital.  I've been up for four days a couple of weeks ago but I'm guessing that I ought to go up next week.  Dad is sleeping a lot more these days and is becoming more incontinent.  He;s painfully thin and has no energy and apparently just looks very sorry for himself.  That's not surprising is it really?


I hope to hear that we will hear tomorrow what they are going to do next.  Coming home - no I can't see it but perhaps we will find out something more tomorrow.


I think I have the week free next week and I've just got to move some stuff around (non important) and go and do some supporting of my mum and my brother and his wife who have borne the brunt of it so far.

A Coordinated View

So we find out after close to 4 weeks that Dad's Liver problem was acute and it was good that he came in to Hospital and get that treated.  Now call me stupid but no one has ever mentioned his Liver as a problem until the last few days!!!  So there you have one of the problems we are facing.  We thought he was in there because of a diabetic problem and all along they were also treating his Liver issues.  Now he is stable - of course he is still suffering from Cancer and that is progressing.  But why oh why did it take almost 4 weeks to tell us.  Well it appears that different doctors all tackle different areas and so we've only ever seen the diabetic guys.


Hopefully something is now being done about telling us what the hell is going on.  The problem appears to be that not one person or department is taking a holistic view each is tackling their own fiefdom!  Anyway - let's hope that they finally get their act together and resolve this in the next day or so.  That way we might be informed of how things are.  Poor old mum is getting all stressed out about things now and if someone would just make a decision it would be nice. 

A Night Out As Top Banana

As Master of my Lodge I get to be an "Honoured Guest" of many other Lodges and so tonight I was on my first visit as Master of my Lodge and it is "funny (peculiar)" how I was treated today.  Now this may sound funny but I was treated a little differently because of the office I held which is great of course but also slightly unnerving because - only a few weeks ago I was treated quite differently.  Well, what do I care, it was a great night out and Flocky Bicep (bless him) came and picked me up and dropped me off - way beyond the call of duty so I was able to have a few drinks there and he dropped me off at my local pub where my old school chums were meeting up.  Much hilarity because I was all dressed up in my Morning Suit and Waistcoat and with my big regalia bag but - they are my oldest and dearest friends so if they can't rip the piss out of me who can?


Not heard about my dad - will talk to my mum tomorrow.  Did speak to my friend tonight (who's father died as I was diagnosed) and he was able to just listen and understand me - he's also a good friend.  Then we chatted about my future and what I want to do and I'm still undecided.  I have a view that I'd like to get involved back in the consultancy and programme management business but on my terms.  I still, however, don't really know.


I wrote a card to my dad for Father's Day on Sunday and that will arrive at the house on Thursday - so I need to let my mum know - hopefully it will be found to be amusing?  I hope so - it is a typical "me" card so I hope he likes it.  

Talking out of turn

I suddenly realised that I was talking to Mrs. F. today about my dad and talking about death and weakness and incontinence and all the horrible stuff (the indignity if you like) that surrounds it and realised A was standing right next door to me.  So I quickly apologised but she said she was fine about it.  We are pretty open about these things and I don't feel that I should overly protect anyone but of course, I do say it as I see it sometimes and I hope you (the reader) or my friends and family think it is a bad thing.  I feel in some ways that perhaps I've earn't the badge but of course not everyone looks at death "that way".


I'm pretty lucky in that one of the interesting things about Freemasonry is that it invites you to reflect on death as well as all other aspects of life and to think about how you are viewed and how you treat people and many other things that - sort of - make you think slightly differently about life and death.  I think when I suggested that working at the charity was a way of paying back my experiences might be taken as a twee statement but I meant exactly that and don't forget that in working at the charity - things went both ways - it was mutually beneficial as it "healed" me and allowed me a bolt hole away from the high pressured environment that had probably, in some way, aided and abetted my cancer.  


I do have some faith but it isn't absolute and it was shaken to the core many times over the year and I don't always "get it" I can understand it and many of my friends are good Christian folk and who really are interesting to talk to and listen to but somehow I never did get back to it, perhaps after my friend died when we were very young leaving a young family and all that entailed.


So, death is the inevitability of existence and no one can cheat it - no one at all, no matter who you are, how rich you are and so on.  The great leveller as someone once said.  In my world, the last thing I want to happen is for my dad to die but he has no quality of life now, he has no dignity, he cannot do anything, he isn't completely miserable I suppose but it's not him, it's not the man I've known and admired all my life.  Life is precious people say and I guess that is so.  He is of course precious and dear to us all and of course to my mum and my brother possibly a little more so than me.  I'd wager that my dad has a similar psychological profile to me although I'd say he is far more introverted than I am he does have very similar traits (or I do of course) and that's not surprising.


I'm saying that because I'm being quite pragmatic about things and I've taught my children to be so.  We all know what is going to happen and we know that we wont like it but it is going to happen anyway.  We can celebrate the good times and that's what we do because they were good times.  In the last 10 or more years, we haven't seen much of my family and so they are actually quite remote in a way - we've seen more of them recently or at least tried to but I remember my grandparents dying and after a while I wasn't allowed to go and see one of them and I was busy building my own life, getting married, working my butt off and so on.  That's what happens.  My dad knows that and whilst we spoke on the phone irregularly over the past 10 years our contact has gradually faded away as he himself grew towards this illness.


Some 18 months to 2 years ago I remember going to see my dad and coming home being very upset.  I was upset because in the 3 or 4 days I was there he barely spoke to me, he just sat there and watched TV all day long and as long as I didn't disturb his routine I was tolerated. Don't get me wrong, he was already ill by this time and no one knew any different we just thought he was getting old, set in his ways and grumpy :-)  When I say tolerated I mean that in the way that as long as I fitted around the routine it was OK.  In some ways it made a lot of sense when he was diagnosed and whilst mum and my brother beat themselves up about it, dad would never have gone to the doctors because he felt grumpy and as he wouldn't have a blood test they would never have found out what was wrong with him back then anyway and - would they have even found it then?  I doubt it.


So where am I going with this.  Oh yes, it's like me at the moment.  I take no control over my kids, I am interested to help them whenever they ask, I will happily check their work, their contracts and provide advice but it is their life and theirs alone.  My dad was like that with me.  I could always ask if I wanted but he didn't interfere.  My brother is very different needing a close relationship altogether.  I flew the nest a long time ago, I'm close to my mum but not in a lovey dovey sort of way.  I speak to my mum everyday now - I only used to call once a week before.  I probably only saw my folks once a year before that - maybe twice and when they lived here we saw them every month especially when the grandchildren were young - which I thought was important.


So - I'm working out that I'm being all matter of fact about this, that I'm being completely real with the kids about granddad and that I'm fully expecting to have to be "the strong one" for the forthcoming events.  I'm sure that I will be able to do that, I probably wont like it but it is just something I'll have to do.  I find it all rather strange because it is played out at a distance and I'm not there dealing with it day to day - it is very stressful I can tell from my conversations with mum.  Hopefully tomorrow someone will come to some decisions and provide some options for a way forward.  It will be 4 or 5 weeks since all this started and still there is no resolution in sight.  It's hard enough to see him in hospital and know that he is unlikely to walk again now but not knowing what the future holds is still quite difficult.  I think we all know what that future is but when and how need to be broached soon too.  Things can't keep on going like this indefinitely.


In some ways, I'd like to get a call in the morning saying that it is all over and finally that would mean that dad would be at peace and rested.  In his mind he is still going to come home when he feels better.  He thinks sometimes that he will go to sleep and not wake up and I see fear in his eyes for the first time ever.  I see how this cancer has brought a great man down to a point where he is once again almost as helpless as a child but at the same time his mind isn't a childs, he realises that things aren't right and it really isn't fair, it's cruel and to go back to my original notes above how can you reconcile your beliefs with something so cruel?  I guess life's like that - although a compassionate entity would surely take a different view?  


I suppose things will be what they will be soon enough and I guess people will look at me a bit strange (they do now anyway) because to me the issue isn't how we die, it's how we lived and what we did with out lives that's important.  I look at my two kids and see well balanced, fun loving kids who get on well together (I wish my brother and I did even now) and who work hard and that's my pleasure.  Then there's a number of other recipients that will never know me but will have been helped and that's my legacy too.  I'm not convinced I've done everything I want to yet but I am sure that I've provided the best I can for my kids as my parents did for me.


Well - this blog is rambling on a bit now but it helps to get this stuff out of my head - goodness knows where it all comes from?

What a weekend

I'm glad to see that I didn't blog here on Saturday night - I would have been wrecked :-)  We managed to end up after my Installation in the bar for 7 (yes) 7 hours....  Considering I'd already had a few pints of beer, some wine and some port the following 7 hours of beer and whisky and no food may have contributed to the rather thick head I had on Sunday.


My Installation meeting was great - I really enjoyed it once I got past the bit I had to remember myself.  Having next to no sleep on the Friday night with my mind racing didn't help either.


I've spoken to my brother and sort of heard his side of the story out and now I'm just going to leave him to do his thing - I see what he is thinking and he is doing the calls and stuff.  I've offered whatever I can at this end.  Mainly, I'm going to be the one who will end up doing all the calls and arrangements as I'm sure that they wont be able to.  Anyway - let's see what happens with that when and if it happens.  As for Dad, well he wasn't good yesterday and they gave him some pain killers which sent him off to sleep which is probably good but we will just have to see where it goes this week.  The trouble is that no one is taking a whole life view for us - each specialist is doing there bit and no one is talking to the other person.  This is the trouble with the way things can be.  No one is looking at his cancer (I know they can't do anything) but they are treating the symptoms and maybe they ought to be thinking things through slightly differently - anyway, I kind of hope he isn't there for much longer.  There is a possibility that we can get dad moved to a home that is local to mum - if that is the case then maybe things might get a bit better.

Emotion versus Pragmatism

I think of myself as a bit cold and calculating and yet can get quite emotional (as you may have noticed in earlier blogs) over strange things these days.  I'm currently reeling over my brother's assertion that dad can come home and that he can possibly find someone willing to spend time at home looking after him!  It isn't going to happen as we don't have 1 to 1 nursing care in this country and he's barking mad if he thinks that there is the remotest possibility that anyone will do this unless he pays for it I suppose.


Totally impractical as my dad can't even move himself up in bed let alone get in or out of the same and he requires 24x7 care and my mum can't do it.  He is no realist and believes that dad will come home.  I'd love to think that it might be possible but there's no way that is going to happen and the sooner he stops telling my mum this bunkum the better I'll feel as I may have to give him a call and a bit of a slap if he keeps pissing my mum off.  Doesn't he think it is difficult enough already?  At least his wife has a bit of sense and I hope that she will give him a bloody good dressing down tomorrow after she has spoken to my mum.  She and I had words earlier in the week and she and I know that it just isn't going to happen.


It looks as if they will be able to transfer dad to a nursing home which, I hope, will give mum more access and give him a little peace and quiet away from the hospital.  It will allow mum to get a little more involved in his day to day care and to have him nearby.  I said to her tonight that it is totally a case of what is good for dad and for her, that my brother's wishes and my wishes are not to come into that decision, it is what is best for him and her that are important.  Unfortunately my brother doesn't work like that, he felt that dad was selfish in not having the full Whipple operation when it was offered - easy for him to say and easy for him as he wouldn't have had to go through it.  The bypass was heavy enough and whilst it gave him a little more time, it really hasn't contributed to any greater quality of life (in my opinion).  


I really don't need my brother adding to my mum's stress levels and he does annoy me that he spends his time advising on medical things when he isn't a doctor just an administrator in the system.  He's full of great ideas found on the Internet but doesn't actually sort things out himself leaving it to others, like my mum, who he has asked to make a series of phone calls on Monday about this alleged 1 to 1 nursing he thinks exists.  What a tosser, hopefully his wife will give him a slap around the face tomorrow to bring him to his senses.

Nerves kicking in

I wasn't expecting to be a little nervous - but there you go, I can feel the nerves kicking in and I still haven't quite got my words right and so I'm working on those today - I have decided that today is all about getting it right.  I've written my speech but I'm not really that happy about it at the moment, it doesn't quite flow, I have to make some subtle adjustments to emphasis and also just get the few funnies right - it's a big audience and so I need to be just above subtle but not in your face - working on that now :-)


I'd like to do my speech without notes but I've never done that before unless it has been an off the cuff performance which this never was going to be.  Now I need to make sure I have all the necessary things ready - suit, tie, waistcoat, shoes are clean and so on - take some glasses so I can read my script and ensure that all the paperwork I need is available.  


I just need to be myself, enjoy the day and make sure that I meet and greet everyone and work the room.  It will be difficult as I'll be centre of attention for the day - I just need to ensure that my guests all look after each other as I will be somewhat swamped with people wanting to congratulate me and vie for my attention - I should be in my element but actually I never really enjoyed it that much.

Just a matter of time

Like it is for all of us I suppose, eventually we will meet our destiny and we've now been told that dad's time with us is coming to an end and that he can only be made comfortable and will not be in a position to improve or gain any strength.  It is very sad and distressing for the family to see him like this and I've often felt that this is the cruelty of the disease.  It tears up your loved ones before your eyes and you've got no chance to do anything about it.  In olden days, I'm guessing he would be dead by now as he would have contracted such a serious series of infections that would have been untreatable.  These days, they can work miracles and indeed so they have but at what cost?


I remember going to the funeral of my uncle who died very suddenly and the vicar spoke about how sometimes it was better like that.  He died young and whilst it was one hell of a shock we would always remember him like that, as we had known him the last time we saw or spoke to him.  It was a hell of a shock to us all but I kind of understand what he was saying and in a way, and I really don't mean to be cruel, it might be better if dad didn't wake up tomorrow morning.  I know you'll think that an awful thing to say but that's how it feels and he's enjoying no quality of life and isn't likely to either, he is deteriorating and being kept alive by the wonders of medical science.  


This isn't the man who I've known all my life and it isn't the way I want to see him or how he would want to be seen either.  I certainly don't want to remember him like this I want to remember him as my dad, as my father, the guy that taught me wood and metalwork and the forward defence stroke, to play football, fly a kite, build sandcastles and all that good father son stuff.  Now he's a frail and frightened man, not even in his home, being looked after by overworked nurses and doctors and frankly wasting away before our eyes.  I feel sorry for my mum who has stood up to all this for these past 10 months or so.  Of course you never really want someone to die or to no longer be there but you never ever want them to suffer like this - although suffer may be too strong a word.


Cancer, as I've often said before, works on many levels beyond the disease itself because of the way it is perceived and understood and misunderstood all at the same time.  Early posts explore this element of the disease and yet then it was about me and what I was going through and the shit I put my family through (note that it wasn't cancer that did that - it was my fault!).  That's another one of those things you do.  My fault, I caused suffering for others and so on - how strange is that.  It's as if you had been hit by an uninsured driver and it was your own fault for being there at the wrong time!  Bizarre thing  cancer.


So, there's me being wicked and being concerned and looking in to dad's eyes and seeing the fear.  Fear to go to sleep in case he doesn't wake up, of his eyes failing and being blind and then he looks at the flesh hanging down loosely from his arms and pulls a disgusted and fearful face at that.  His voice is becoming feint and his strength is going, his patience is growing shorter and his comprehension skills are failing as he fails to understand what you say to him.  Now his feet and hands are growing cold and gradually his body is shutting down.  


I'm not sure if I'm just braving this out or have rationalised it in my head or through my own experience when looking back at my dark days.  I wonder if things hadn't gone so well whether I'd have thought any differently.  I'm hoping that I am thinking pragmatically about death.  I hope that I have no regrets and that I am comfortable with my lot, that I made a difference to someone, anyone, and that I lived a good life and did the right things.  I certainly feel this way more so because cancer became my great leveller and that I also learnt some key lessons during that time.  I had 2 years to re-build myself and my confidence in the charity and whilst I saw some pretty bleak and awful things happening to other people, it made me realise how lucky I was.  I also "made a difference" in the time that I was there, that was the thing, I did something for other people and many didn't know who I was.  


I look back at achievements and they aren't what you think they may be.  They are my children and their upbringing, their work for other people and their work ethic and maturity.  I look at the difference I made to other lives and these things are my achievements.  The rest of the things are material and transient, worth less now than when you bought them.  We have everything we need, shelter, warmth, food, health - not sure what Maslow would make of it but there you go.  In many ways I think another achievement may be to educate those friends and those acquainted with me that cancer isn't what they thought it was, that you could take an attitude to it and that you can beat it and you can come through it.  Now I look back and wonder and see how people viewed me and I don't see myself in their description of me.  I never really thought I was ill or even looked ill but some of the photos do show me looking drawn and grey, I now look a lot better and often get reminded by my mates that I used to look like sh1t :-)


So - big change in my attitude, 6 years ago I would have wanted a fast car, big house, dah de dah but now, that actually isn't on the important list at all....  However, not everyone thinks like that and so that also makes for an interesting time.

Out Again

I was out last night at the Jazz night which was good - it looks as if I haven't been at all this year!  So perhaps not been for more like 8 months.  It doesn't seem that long ago but perhaps it has been as the last signature in the book of mine was September 2011! It was good to get along to the event anyway and enjoyed the beer and the music.


Tonight, it looks like I am out again to meet my friend who is also the Director of Ceremonies for Saturday and I know that he will want to run through some procedural stuff and make sure that I'm prepared for it.


My dad should be being assessed today to be given a holistic view of where we are and what needs to be done.  I'm pretty much of the opinion that if he doesn't get his strength back he will need to stay in some form of care and whether that is in a Hospital bed or some Care Home I just don't know.  Hopefully though we will get some sort of resolution on this as the journey to and from the Hospital is 30 minutes each way and it is wearing on my mum as well as for my brother and sister in law.  If he can come home - which he may appreciate, he will need a lot of care and this is the problem - he almost needs one to one 24x7 cover, I cannot imagine that is likely given how things are in the NHS and Social Services and I don't think that Marie Curie nurses would be right.  But I am jumping the gun here and we need to hear what the specialists say.


Unfortunately it is only a matter of time though and making him comfortable and stable is the priority as well as ensuring that he is receiving pain killers as and when they may be required.   I still feel quite remote from it all and wonder if that is something unusual in my psyche?  Other things provoke emotional responses but not this - well not as deep or spontaneously.  I'm wondering whether I'm some sort of weirdo :-)


  

If I may?

A Bradbury Quote from the Locusts (Locusts of Mars) Martian Chronicles.


This is the power of writing - it doesn't get much better than this to screw with your mind! :-)


"The rockets set the bony meadows afire, turned rock to lava, turned wood to charcoal, transmitted water to steam, made sand and silica into green glass which lay like shattered mirrors reflecting the invasion, all about. The rockets came like drums, beating in the night. The rockets came like locusts, swarming and settling in blooms of rosy smoke. And from the rockets ran men with hammers in their hands to beat the strange world into a shape that was familiar to the eye, to bludgeon away all the strangeness, their mouths fringed with nails so they resembled steel-toothed carnivores, spitting them into their swift hands as they hammered up frame cottages and scuttled over roofs with shingles to blot out the eerie stars, and fit green shades to pull against the night. And when the carpenters had hurried on, the women came in with flowerpots and chintz and pans and set up a kitchen clamor to cover the silence that Mars made waiting outside the door and the shaded window. "


Imagine a book filled with such wonderful prose - there you have the Martian Chronicles....

Ray Bradbury

Has passed away today at the age of 91.  I read Fahrenheit 451 but my real love was the Martian Chronicles or the Locusts or Mars (I think it was called).  It was one of only a few books that took me away from where I was and opened things up.  Other books must include Lord of The Rings, The Gormenghast Trilogy, the regeneration Trilogy and perhaps Wilt by Tom Sharpe (strangely enough) were life changing works.


I still prefer historical books and I still think that Martin Gilbert's History of the 20th Century is just an amazing piece of work.  Add to that the House by the Thames and London a Biography and Cromwell our Chief of Men and you can keep me chatting all night long.  I will not do that.  I will however suggest that if you haven't read the Martian Chronicles that you should do so.  There is something hauntingly beautiful in the prose and like Gormenghast the words flow off the page and pull you in to a wonderful world - far more enchanting than Rowling's Harry Potter, far deeper and far darker and yet somehow beautiful.  


How I admire the ability of these authors who produce literature that you can easily read, immerse yourself in and enjoy.  I enjoy it for "what it is" and find the sniping critics don't appreciate the effort that has gone in to convey the story (whether fiction or factual).  To capture your reader and take them on a page turning roller coaster of a journey is a magical gift indeed.  I just wished I possessed half of their talent and might be able to properly express myself using correct English Grammar would be half of the fight :-)


We should mourn the passing of great artists like Bradbury who's imagination and writing were unbounded by present day constraints.  I now need to go find the Martian Chronicles and re read it - I'm sure that I will not be disappointed.

Jazz Night

Blimey when was the last time I went to Jazz Night?  Probably January I think as Peter was there and died a few days afterwards - sad but mercifully quick from what I understand and from my own experience with dad, this hanging on and no real quality of life, I can understand why it was probably better albeit such a shock.


So I haven't been to a Jazz night for a while and I think I may have missed one through having a cold or if not that through the scan or something anyway, I'm going tonight despite the rain!


I've come off the Slow carb diet for a while only because we've had a series of things going on and loads of events and it was just too difficult to maintain the discipline.  I'm eating properly though and managing to keep my weight.  I do need to get back onto the diet in a week or two when there are no more calls on my attendance at meals etc.  I haven't put on any weight so that is good.  


So - out tonight - looking forward to it greatly - I need a bit of a break.

Making the wrong decisions for the right reason

Had a chat with my business partner - I was mulling the stupid set of conversations I'd had yesterday.  These are the sort of conversations that spook you into acting in a knee jerk reaction.  I could easily pick up the phone and get a job that I'd regret in a month and kick into touch.  I need to think things through and be measured and I've got a few issues to be getting on with this week without the worry that somehow we will be in the workhouse by the end of the week.


Right now I've got a series of balancing acts to do and they involve my father's situation as I ought to go up there pretty soon I guess.  He has been in Hospital 3 weeks today which is probably the longest since the big operation.  The issue is that whilst I'm there I won't be doing a hell of a lot - I can do a little but have no chance to arrange interviews and the like.  Additionally, I haven't decided what I want to do going forward.


This weekend is important for me as I will have a really interesting day on Saturday being installed in the Chair of my Lodge, I've yet to learn my words properly and also I've to make sure that I have my speech ready and so on.  I'm working on another piece of business too at the moment which may or may not have any relevance for me.  Let's see.


The very last thing I need to be doing though is doing the right thing for the wrong reason and ending up back where I was some years ago in a job I hated, working with people I had no respect whatsoever for.  Given my change in personality I just don't deal with fools at all these days, I would need to be very careful going to work and having to interact with the drivel that called themselves "senior management" at my last corporate employment.  I need to be convinced that I'd be able to listen to and live in the same crappy place as I was before and I know the answer to that without needing to write it down.  


There are now lots more terms and conditions that I've set myself (self imposed) that these days I don't want to compromise my integrity and would rather work in a better place with lower wages if it meant that I'd satisfy that criteria.  I don't want much do I? :-)  

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.

Not what I expected

It's one of those very strange moments where everyone has warned you how someone looks and you fear the worst but in effect, it isn't as bad in some-ways as you thought but in others it is.  My dad looked like my dad, he was thin and he is looking very old now but it was still my dad.  He is though getting quite annoyed.  Annoyed at no one knowing what is wrong with him and just being helpless.  He's not really been helpless and at the moment it is distressing to see how much nursing assistance he needs.  He has some moments of fun but you're never quite sure if he is being sarcastic, ironic or annoyed and showing it.


He has been moved to a ward that should be able to deal with him a bit better than the previous one.  The problem is that we can't actually find out what is going on as the professionals come around in the morning and speak to dad and by the time we have arrived he has forgotten what was said or has confused it with what they were saying to the chap in the bed next door to him.


Back again in a few hours - these are long days as dad goes in and out of sleep and he talks quietly in a noisy place and so gets angry when you don't understand what he is saying.  

What on earth am I going to find?

Well I will see tomorrow as I'm off to visit my dad.  Will get away nice and early to miss the rush hour traffic and get breakfast with mum and give her someone to talk to for a while.  I doubt she has had the opportunity to get it off her chest.


Sister-in-law called to give me a heads-up on how dad looks which is pretty grim from what I can understand.  He's pretty grumpy and pretty fed up which also doesn't surprise me so I hope that he is a little more with it tomorrow and I have to remember to hear him out as apparently he does take a while to say what he means and goes off on tangents.


They are still trying to sort him out in terms of blood sugar levels as well as clearing up slight infections.  We don't know what the Hospital wants to suggest about coming home although, from what I hear, that is unlikely as he can barely stand up at the moment and can only do one or two steps and refused physio earlier today.  


I have volunteered to go up for three days but have packed for 5 which I can just about achieve as I need to be back for Sunday as we have a Sunday Lunch booked at a rather nice Hotel and I have to do a presentation.  Next year it will be my family Sunday lunch as President.  Mind you if I have to cancel so be it.  Some things may be more important of course.


Difficult to know much more until I get there really.

First Day

That I have not been working on the business for 2 years - strange feeling and of course a little sad but would you believe as one door closes another opens - or three in fact so far.  People that I know want to chat to about new ventures they are involved in and another is a possible insight into funding through the EU although given their problems at the moment that could be fraught with difficulty.  Mind you there does appear to be some interesting projects being dealt out from there.


I'm just preparing the way for going to my parents place tomorrow and getting packed and stuff ready - computer and phone chargers and stuff like that are all needed! 

No appetite

Strange - I forced some scrambled egg down this morning and some mackerel and spinach at lunchtime.  I really don't feel too much like eating and I have to say I'm getting that dread feeling and slightly tight chest I get when I'm likely to have to do something stressful and let's face it, going to see your dad when he is about 5 stone lighter than you remember him, wired up in a hospital bed plus the associated sadness that the family will be feeling is going to be, at the very least, a little stressful.


I'm getting ready to go tomorrow and probably spend 2 or 3 days and prepare for 4 or 5 if needed.  It will give some respite for my brother and hopefully some support for my mum and dad.  We will see what will await me as I've done this trip a few times now.  I've got loads of change sorted out so that we can feed the parking meters at the Hospital and let the fat cats grow rick on the parking fees of the sick.  I never really got that but understand that one of the reasons that they had to put fees on were that locals were parking their cars there for free and using public transport from there....  This is the society we probably deserve when this is acceptable behaviour and also for the use of what appear to be fines for everything to check it.  It's unfortunately blindingly obvious that it is all about the money.  The politicians and fat cats are too remote to get it and wonder why they are despised by the majority....


Anyway - my little rant as it costs a fortune to park there to see dad and who can afford the sorts of sums they ask is beyond me and long term illness must cost people a fortune - so much for a "free" NHS.  

Eating

Strange that I wasn't really feeling like eating and even at lunch time I forced down some tuna and Spinach.  I think that the diet will be a bit shot this week as I go up and see my dad.  I'll probably stay with my mum which will save me some hard cash.  


Mum seems to have started to realise that Dad will probably not come home now and I think that she is able to say these things to me but not to my brother who would be a little upset by that sort of talk.   Dad's not great, still eating and drinking and getting good care but has a number of small ailments that aren't helping him be comfortable but each is being checked and acted on.  Tomorrow he has a big assessment day, it appears that they have stabilised how rough he was feeling with pain killers and they have managed to get him to walk a few steps but, in all honesty, the three or four steps completely exhausted him.  I think he is a bit more lucid and I believe that he is at least able to have proper 24x7 care that mum just cannot achieve.


I'm going to go see him this week after I've spoken to mum after this assessment I will go up for two or three days and see what I can do.  At least I can do some of the driving around in place of my brother and sister-in-law.  I guess that I might also be able to allow him to "tick the box" if he is waiting to see me.  My daughters are in their examination week and final project weeks at University and I'm very much hoping that nothing disturbs their week so that they can get their work done.  


I am preparing myself for the worst and whilst I know my brother wanted me up last week, at least this week I can managed more than a cursory visit.  We will just have to see how it goes.

Eating

Have to say that after a cheat day or any day off diet I find it particularly difficult to eat the next morning.  Today I just don't feel like it at all.  In fact I feel a little sick.  I will go and eat a little at lunchtime but definitely cannot stomach food at all and yet tomorrow all will be fine again.  I really should eat within 1 hour of rising but I'm not going to force myself to do that.


Dad remains stable in Hospital and they will assess him tomorrow.  I will talk to my mum then and then decide on going up to see her/him.

Strange Result

The diet is totally messed up this week and I thought I'd weigh myself this morning and to my great surprise found that I'm still the same as last week so hopefully not too much damage done with 4 days of eating out.  Well it will be 4 by the end of today.  


I have very little appetite in the mornings - not too sure what that is about but seem to be OK when on plan?  Anyway, there should be little stopping me getting back on plan next week.  I am working out what to do based on what my Mum tells me later today and tomorrow in terms of going up to see my Dad.