Nearly Everything Done Now

In fact so much is now complete that I will go home tomorrow night and pick up my daughter L on the way home.  That saves her a train journey and the cost on that.  


All the paperwork is complete - dad is at rest locally, mum is sort of OK but has the most awful "nervous" cough which only seems to go when she has a cough sweet or some honey, hope that it will go away after the funeral - it is directly related.


So far we've managed to get just about everything completed except the order of service and I'm waiting to hear how long I can speak for in the 25 minutes we are there.  We have an overall window of 45 minutes start to finish but just the 25 minutes for the ceremony itself.  With any luck, that will mean that the music is limited to 3 songs (maybe 4) and that means that the verses will also drop down to one or at best two not some of the epic poems that my brother thinks are required.  


Went out to lunch with him today and hope that he's happy with my wishes for the cards and in fact it appears he may have gone in an gotten some for himself and his family so that they can have their verses on those too.  I shudder at the sickly sentimentality of it all.  Thank goodness I only see him very occasionally - he may look like me but goodness knows where he gets his ideas from.


As an example here is what he put on facebook:


"My Bestfriend

No one can hear my screams
In my thoughts or in my dreams
As I lie here waiting patiently 
I wait for the day you come back to me

God took you away 
He made me let you go 
It happened for a reason 
That’s all I care to know

Lately I have been thinking
Thinking about the past
The laughs and cries we shared together
You died too young, too fast

I will always think back
Back to that horrible day
The day I found out
That you, my friend, my father died.

God Bless Dad, no more pain, no more suffering XXXX"

Of course, I'm not saying it is a bad thing but I'm not certain that he would relate to this at all (dad that is).  I mean "You died too young too fast"  Well he was 81 and it took close to a year.  Not certain I get this sort of stuff at all.

Most things done

Just trying to finalise my list of things to be done.  Have recorded the death, got the permission for dad to come home (well to the Chapel of Rest).  He is now just around the corner here and mum will go and see him next week.  It's not my sort of thing at all really, I don't get why you'd want to see a dead person.  I'm sure it wont be horrid but it doesn't appear high up on the things I want to do.  All the letters and emails, phone calls and arrangements are now made and I'm trying to work on convincing my brother who isn't a man of the cloth to stop acting like a vicar and writing loads of sentimental slush on things.  I'm happy to let him have his way on the Order of Service with his Eulogy on the back pages, I'll be delivering the family tribute.


The problem I have with it is this, my brother has got really uptight and just writes the most cringe worthy stuff that my dad would hate.  He really has lost the plot.  So there's been a few frank exchanges of view about it and certainly in terms of the music, I've managed to change that to something a bit more like my dad would like and I hope when we see the vicar that we can have a minimalist version with just enough religious content to make sure things are done properly.  My brother had also misinterpreted the amount of time we have so he thought 45 minutes but when I spoke to the Funeral Director to check it is actually 25 minutes so there's something that can be worked on to minimise the impact.


Anyway, I'm delighted that I have managed to get so much achieved and that the funeral will go ahead in a weeks time.  Now to make sure that my brother sees my point about writing prose on the flowers dedication cards.  It was lucky I didn't read beyond the first few lines it was that sentimental I might have puked up.  He needs to get out more.

Strange Day

I have a headache but atmosphere (humid heavy) and the stresses and strains of the day have all added to things.  Mum phoned this morning and both of us had our birthdays messed up a bit.  I doubt dad even knew what day it actually was and he would have been distressed if we had told him.  I'm now just getting ready to go up for 4 or 5 days to see what I can do.  


Quite a bit has happened already and so that's OK but certificates need to be collected, the Registrar of Births and Deaths needs to issue the Death Certificate and other paperwork and then we can proceed.  It looks like, as long as I can achieve paperwork tomorrow, we can go ahead with a funeral on the 13th July.  They were going to go for the 16th but that is A's Graduation Ceremony so that's not possible and it is her first week in the job and she needs compassionate leave so she is a bit worried about that too.


I'm going to get ready now as I will set off at around 4 am to avoid the traffic and so that I can be with mum for breakfast.  It also avoids the toll on the river crossing too :-) 

On Reflection

Going out to dinner and not cancelling it was a good thing to do.  Telling my daughter in the Restaurant wasn't ideal but she went straight there and I was hoping she would come home first.


Cracking open a bottle of Champagne and toasting my dad also not such a bad idea.  Putting on the film Koyaanisqatsi  was, I feel, a nice way to sit down and reflect on things.  However, whatever made me select Field of Dreams afterwards is somewhat debatable.  I suggest to you that if you remember the ending you may recollect why I found tears very easy last night, nothing much just tears at those last scenes before the cars arrived.  Magical moment really as it is really an uplifting film, maybe a bit cheesy but uplifting nevertheless.  The final film I tried to watch but was too tired was 2001 - dad loved Science Fiction and I thought 2001 was indeed another sure fire certainty to set me right.  However, I didn't even get as far as the Docking sequence and had to retire to bed.


Slept well with all that Champagne in my system it would be difficult not to.  I think my dad would be laughing mischievously today though as my birthday card I opened today comes from him.

And that's it - Dad is dead

I arrived back home and got the call from my brother that dad had just died a short time before he called.  It is all a bit strange and a bit sudden and to say I wasn't expecting it to be so soon would be an understatement.  But he passed away at 1:30 in the Hospital just as my mum arrived in the car park below.  They'd just parked up and the call arrived.


In a way I think that is a good thing, we really hated seeing him just lying there and all helpless and sad and at least this meant he died without pain and his life just passed away.  I suppose mum may have wanted to be there but I'm not sure that you can ever be there all the time and she's been at his side all the time she has been allowed to be there.


I won't be forgetting my birthday in a hurry :-)  I'm sort of OK with this at the moment, I feel a little bit strange but not what I thought I'd be like.  Perhaps after the shock has gone?

I'm a bit strange I admit

I decided that tonight I'd watch one of my all time favourite films Delicatessen which is a pretty bizarre choice given the early state of my mind and the news I'd got from my mum - or is it?


Those who know me probably "get it", I needed a bit of an escape and a bit of black humour to try and stir me up a bit.  Mind you, the problem is that it didn't really settle me down like I wanted it to and I'm still awake now.  I need to get up and get to my "interview" in the morning so I'd better head off to bed now or else I risk being asleep during the meeting.

Nearing the end?

I know I've been in a strange place most of today and Flocky came and cheered me up a bit this morning but I've started to lose my voice a bit and that's stress and anxiety and depression all in one there.  Nice to report that A had a good day at work but didn't enjoy the call from my mum at all.


Dad now realises that he is "fading away fast" and that he is dying, he said as much today and the Doctor came along and basically said "Sorry old chap, I can't do anything more for you other than to make you feel comfortable."  So the Morphine Syringe Driver has been installed today and the inevitable decline has started.  My mum reports that he is bloating up a bit with water retention and she thinks that is a precursor to Renal failure.  


I have a meeting tomorrow for a potential job and on Wednesday I'm due out - and it's my birthday.  The girls are threatening to take me out tomorrow evening for a meal and so I'll make that and just have to take pot luck on what has happened during the day although mum and kid brother have my mobile if they need me.


I have to say I'm really not in a great place today, the 6 year anniversary hasn't helped much and  I'm just going to have to see what will be this week.   I really don't feel great but that's pretty obvious why that is.

Nice on Flocky

Came over and took me out for a Coffee and I wasn't allowed to pay and he added the points onto my loyalty card and paid for the car park.  Worried he'll be calling me a free loader now :-)


Actually though, it was very nice to get out and have a little company and to take my mind off of today - it is strange though I still feel sick but sort of half way up my throat - I don't know if that is stress or what it is but there you go.  Funny reaction considering it's all over but I suppose when you think of it, it's a bit like surviving a train wreck or something similar.


Will be good to get today over with and get back on track although I have to say I'm far off knowing what I want to do with my life from this point onwards :-)

A off to work

What a day - A goes off to work - her first day in the job - I am feeling nervous for her but I'm sure she will do just fine.  I'm looking forward to hearing all about it tonight.


As for me - well I feel sick - I just don't feel great today but then it is my 6th Anniversary and so not really a day I want repeated and I had terrible dreams last night and dad's situation is playing on my mind too.  I just need to write today off although I am pleased for A of course.


A lot has happened in 6 years, many things have changed and here I am once again wondering what to do next.  I dreamt a lot last night and it was all to do with living and not being where I am now.  It sounds strange but it was all about whether working and building my pension now would be any use to me in the long run and if I'd even make it that long (I know - I have disturbing and strange dreams).  It was throwing something right into the mix and asking whether or not to conform or to just get out there and do something or live a life less ordinary (sorry I must have stolen that from somewhere).  


Well - I'm sure that something will come out this week - be glad to get today out of the way and hope to feel better tomorrow especially as I'm off for an interview / chat.

Hopefully I'm not as paranoid as I seem

I find it increasingly difficult to not be blowing between high emotion and stony cold logic, between being in a totally confused state and one of absolute certainty.  In each day I flash between diametrically opposed positions with such speed that it should make me dizzy.


Tonight I flash between being upset for my mum (her birthday in ruins), my dad's health, my daughter's first day at work, the complete lack of communication between Mrs. F. and myself today and whether I really want to work or not and what I want to do.  I'm absolutely nowhere at the moment and now, well now, we are into 2nd July territory and the significance of that as the day I discovered I was ill (not knowing it was cancer).  I can still feel the utter revulsion and utter horror at discovering blood in my urine - and not a little - a lot.  


I feel that later on when I get up I will be having a bit of a bad day - it's already on me now as I write but in many ways, perhaps with A starting work it will become a good day in the future and not be about me but about her.  I often ask whether now, with her working, is my work done?  I'm glad that I survived to see her Graduate and see her start work.  I'm impressed that she only finished University last week and has a job the week afterwards - now that's impressive :-)


I am lifted by her achievement - I'm just not certain about my own performance at the moment - I feel I fail in so many ways and yet I'm told I beat myself up unnecessarily?  Maybe that's true, I just don't have the confidence at the moment and I just don't feel right inside.  Crazily enough I feel well but something keeps grabbing my thoughts and pulling me around - and I know it is my own self doubt and my own inability to deal with certain aspects of my life.  Such is always going to be my problem (as an INTJ) because lots of things in life don't make any sense to me whatsoever.

Her Big Day

First day at work for my first born :-)  I'm delighted for her as she has worked so hard to get her Degree and I can only assume, as she got the job, put herself forward well to get the job.  I remember how nervous I was on my first day and how long it seemed to be.  I also remember how tired I was as you seemed to use your brain and body differently and so I remember being absolutely exhausted after the first week.


She will be working at the National Gallery in London and I can imagine that she will absolutely adore working there.  As a child of 8 she asked me to take her to the Gallery and we had a great day, she showed me a number of famous pictures and explained them to me and knew who the artists were and what the pictures meant.   Not bad for an 8 year old.


I'm of course a proud dad - I just hope she has a wonderful time and enjoys her job.

A Birthday to Forget

Mum's birthday - she doesn't want to celebrate it and she's not sure whether dad knows it is her birthday.  I did ask my brother to sort out a card and he had already done that - bless him.  Of course, she isn't really happy at the moment and its a terrible drag on her as dad slides down towards his destiny.


Let's hope that tomorrow they can assess him and get him into the home because if nothing else the change in scenery will do him good and in addition, the view over the garden and the peace and quiet may also be helpful and maybe give him a lift.  He can have things in his room from home and mum can spend more time with him.  I certainly hope that it will be a better place for him and for mum as it is nearer the house 10 minutes not 30.  Fingers crossed that this can be achieved.


I was out with my mate on Friday and I now "get it" why I'm particularly depressed (there I've used the D word again) around this time of year and of course, it's the anniversary of our cancer journeys.  I was being freaked out by the symptoms of mine and he was just about to go into hospital and have a pretty awful procedure.  So perhaps it's the memory or the time of year that brings on this general feeling that I have.  It's even got so far as I'm even thinking of not taking the job (that I haven't even got yet) and I'm full of self doubt and just don't know what to do for the future.  Stupid I know and the trouble is that I've got an answer in my head - it just isn't the answer that I want right now.  The answer is right for me but perhaps not for everyone else and I just wonder whether that might be the thing I've been struggling with all this time?  


Perhaps that's what is taxing me and has been for ages.  I know the answer and have done for ages I just haven't the courage to carry it out.  So should you do what you want and sod everyone else when you've got commitments at home?  Should you go and do something like that?  You may think that for 2 years I've done that - but that was business.  Here in lies the problem you see, I'm doing stuff that satisfies the majority but compromises me.  


I need to work this out and that's what challenges my mind at the moment and I can't get to the answer because it splits into an emotional and a practical one.  The emotional argument may well be the answer but the practical, pragmatic me is holding onto the logical and democratic (what's good for everyone) view.  I just need to work it through and the trouble is it is such a BIG decision to make, life changing and that's the problem.  If I go one way I head off and go do my own thing or I settle back down to mediocrity and I'm certain that after the experiences of the last few years is the last thing I need.

Home from Home

The home that can take dad was visited by my brother and mum this morning and they also got a call that the other home now had a vacancy and so that was good.  The first home has a garden facing room and they liked the staff and the cleanliness and attention.  The residents all seemed happy and all the questions were answered.  So a reservation, subject to them assessing dad was made and with any luck, they can assess dad on Monday and then with any luck he may be moved on Tuesday or Wednesday.  Well that is if he is assessed and they can take him of course.


The other great thing is that the home is just 10 minutes from home and of course, being a home dad can have some familiar things of his around him although he doesn't really want to have photographs as it makes him sad.  Just also heard that a friend's mother has been brought home and being nursed there by the family and things are now getting close to the end.  


Dad spent most of the day asleep today but is better than he has been for most of the week but - what I do hope is that he gets into this home and gets to see the garden and have a quiet room available for him.  Let's hope that this small change might pay some dividends and also give him a bit of peace away from the noisy hospital.

Quadrophenia

Listening to this after seeing the documentary on the TV and not wanting to watch the film into the night - have it on DVD and prefer it in surround sound and loud so just listening in my office to a subdued couple of tracks.  When I was in my flat, my flat mate and I used to have a Quadrophenia night occasionally which meant putting on the album and then cracking open a bottle of scotch.  These nights were never concluded sober...


News about dad is a little better and funding has been granted so brother and mum off to see a home locally to them that has space for dad.  They then have to go and assess dad before they'll take him.  Let's cross that bridge when we get there though as the others in the locale are either full or will only take private.  


I had lunch with my business partner today and that cheered me up as I've been feeling pretty down all this week.  I'll be looking at this job next week and also had a tip off about a job that ideally I could go for but it is a month or two away.  One that is right up my street as they say and one that I could make a big impact in.  However, I didn't get a sniff last time as it was a stitch up (despite them saying it wasn't).  We shall see, this time it is early doors and perhaps I can get some mileage in and get some people asking around on my behalf?  It would be a beaut of a job and I would enjoy the challenge as well as being able to bring some new skills to the job.  Let's see if it is still available.


On top of that though I'm still restless and I'm still not sure what to do with myself and what I want to do in the future.  It sounds dreadful but I'm all for packing it all in and just buggering off somewhere, anywhere and just spending time in a quiet way either by the sea or in the country. It's the runaway from it all thing that keeps creeping in.  I'm stuck here in my present, comfortable, do nothing existence and somehow I want to go away and live.  It sounds and looks ridiculous on the screen here now I've written it but there's something missing, unfulfilled maybe - I just don't know.  

Six Years Coming Up

Amazing where the time has gone and no doubt I'll have more to say about that later on and nearer and after the time.  For the moment though, it's nice to say that I'm still here and that I'm feeling better than I probably have done for perhaps 8 or more years.  I think that, like my dad, I must have been "going down with" cancer for some considerable time as I was quite lethargic and didn't want to do much and was pretty grumpy and not my usual self.  I then got a huge pick me up with a great job but it was only a few months later that I started on the roller coaster ride that was bladder cancer.


After the early shock of it all and the fear and all that, I got on with the job of fighting it and getting well again until today I feel that I've given it a good shot and whilst I live with the danger of it coming back, I don't think about it day to day but what has happened recently, seeing my dad, who is unfortunately very much on his death bed with cancer, is that I'd never really considered those consequences and I'm hating the process and the indignity of it all.  I understand that we all have to die but there's something more to it than that, it's how the body hangs on to life and doesn't seem to give in to it.  I see dad all wired up to cannulas and nebulisers and I wonder why.  There's no quality of life here, there's no chance of recovery and it is just a matter of time until something "gets him".  


What I hadn't come to terms with and I'm still trying to is that - it could have been me.  I know that didn't happen but it dawns on my how serious this all was and how near a miss (1 or 2 layers of cells).  That small margin, perhaps my age and relative fitness, my determination and my family made the differences I suppose.  But, seeing dad's demise in 10 months (which is pretty long considering most Pancreatic Cancer patients don't last long at all) has made me start to re-evaluate my own survival and whilst I say you shouldn't look back and all that, it does make you think that it could have been very different and I'm back to the problem of being in this mid-life crisis for a considerable time.  I've had 2 years of hard work which I don't regret doing - it's pretty difficult to take the complete lack of interest in the project though even by those who say they want the problem solved.  It speaks volumes about the rhetoric of the Government, the building of Quangos that hold an interest in prolonging the problems they are set-up to solve and the general lack of innovative and lateral thinking.  Ho hum.


So this middle aged malaise is all about me and I've got some sort of added issue now with cancer.  Seeing dad it has brought a certain "respect", perhaps fear that I've brushed off or laughed in the face of it before.  I can appreciate why it is a feared disease.  I know that I want to do something different in the future and I'm flattered that someone I know wants me to go and do some work for them, which may just be the impetus that I need to get off my arse and go and do something :-) I might just snap out of this huge rut I'm in - but I still have all sorts of stuff going round in my head.  Not least is this crazy idea of just packing it all in and going somewhere warm and quiet and just relaxing and chilling out.  

Ahem

It appears to me that the biggest problem my dad has now is his susceptibility to other things.  He now has a chest and urine infection.  Now, call me a cynic but don't you think you'd be testing those things regularly?  Considering he's had a couple of bouts of this already and that he's very sleepy and he's coughing a lot?  Well the senior Doctor was in today and he pulled no punches and had a bit of a go at the Junior for missing this.  Three days dad's not been great - finally some action.


I find that this particular ward really isn't up to the standard of the ones he has been in before and you'd have thought - if they want the bed for other patients - they would be making efforts to get him stable enough to move him, it's just one thing after the other at the moment.


I admit to know feeling a little anxious about things at the moment.  I think it is because I'm absolutely helpless in this situation and because whilst the right thing to do might be to be up there, I've now got the possibility of some "paid" work which I'd be stupid to turn away (or would I).  Dilemma - I still don't know what to do with myself for the future and I'm not certain that I fancy the job that much - it is a bit of a trek both by train and by car.  By train it would probably be two 30 minute journeys with a 5  to 10 minute walk between stations and at least 25 minutes at either end of the journey.  By car it is probably 1 hour although it isn't that far (20 miles) it is going through 2 major towns that can be bad - it used to be 20 years ago when I used to drive it.  Additionally there are parking restrictions so I'd have to find somewhere to park the car.  Oh well, I'll see how it goes on Tuesday when I go see them.

Doesn't Get Any Better

Poor old dad, he's now got problems eating or drinking - every time he tries he starts coughing and spluttering and feeling sick.  The coughing makes his limbs ache and he has to sleep as he feels so tired.


It's just one never ending stream of spiral decline, I hate it, it's really getting to me now, especially after last week seeing him really well on the first day and then the rapid decline day after day following that.  Was he waiting to see me before taking his foot off the accelerator?  Who knows.  It's just distressing to see him like he was last week and to hear that he really isn't improving either isn't good.


Oh well, what will be will be I suppose and we just have to hang on in there and let it happen.  


Sometime modern advances in medicine and technology may not be a good thing and keeping him alive (now with drips and the like) seems to be somehow cruel and yet we hold life sacred - strange strange stuff.

My Hospital

Is at the centre of all sorts of problems as the Trust that runs it has debts of £69M  http://www.telegraph.co.uk/comment/telegraph-view/9356532/The-NHS-is-paying-for-Labours-dodgy-deals.html 


The picture is the main entrance to the Hospital that treated me and although it says Bromley it is really in Locksbottom, Farnborough (near Orpington).   It isn't the only hospital in this sort of mess either.  There is another article about how they spent £1M on a consultant to tell them how to reduce costs (what a manager can't do that!).


Oh well, let's see what happens.  I can't imagine it is going to affect patients as such but there ought to be some sort of adjustment made to these PPI contracts.  I worked on one of these things they were horrendously complicated and ran for years and years and there never really seemed to be a winner for the customer.


Since writing here is another article about this debacle http://www.independent.co.uk/news/uk/politics/the-funding-timebomb-that-crippled-an-nhs-healthcare-trust-7888977.html

Bad Nights

I think too much, always have and it disturbs my sleep plus I'm not getting to sleep and then I'm finding it difficult to rouse myself in the morning.   Why?  Well it's dad really as more so now it is how he is that is making me lose a bit of sleep.  It's the reality of what's about to happen of course but it is also the indignity of it.  He doesn't like it being incontinent - he hasn't somehow lost his mind or his self esteem etc.  The disease and it's symptoms has robbed him of that and somehow it doesn't seem fair to me that, at the end of your life, you have to suffer these indignities but obviously that's what happens and I hadn't paid much attention to it.  Most people I know just died and I wasn't involved or they died very quickly.


So there you go, I am probably over reflecting on this and just adjusting my own expectations a bit now based on this.  It's not difficult to see why the whole thing is distressing, you see your loved ones melt away before you.  Dad is so thin now especially his arms and legs and a bit gaunt around his face.  I'm guessing that the tumour is the only thing making his body look "normal".  He's stuck in bed, hardly able to move and it is cruel and I find that distressing and worrying as I know what that would do to me.  The whole process isn't what I thought it would be, I was hoping for a dignified and peaceful end to his life.  

A Little Better Today

Yesterday I'd have told you that dad was just about to throw in the towel and that it sounded as if he was going to stop eating and drinking and continue sleeping a lot more and yet today, his blood sugars were better and so was he.  OK he was sleeping a bit and managed some food today as well.  


So we are back in a steady state and now wait to hear about funding and then perhaps get dad out of the Acute ward and into a nursing home.