Dad not good again

He's not in Hospital but his legs gave way underneath him and his limbs aren't working. His legs and arms are all weak he says and so mum's keeping an eye on him at the moment to make sure it isn't a recurrence of the infection - he doesn't need that.

Other than that he progress well I suppose - certainly better than a week ago but with this little problem it's not good news. Finally he has given in about the car and so that is one thing I suppose. I hope that this was done with good grace but I think even he must now acknowledge that in his present state he can't drive a car.

It's very sad to see him like he is now - I'm coming to terms with it I suppose now but it's hard work and I can only imagine that it is going to get worse from here on in. All plans are on hold and I'm being super cautious about what I'm going to be doing between now and Christmas as I'm pretty certain that I'll need to go up and see him again pretty soon. It looks as if A and Mrs. F. may be up there this weekend so it will be good if they can pop in to see him.

I liked this

"Picasso had affairs with most of his models. Although some tried to resist his charms, they found themselves strangely drawn."

I love stuff like this - it really is a great play on words.

Had a meeting tonight and enjoyed myself - had a guest of mine along who has turned out to be a good friend - we have very similar backgrounds and he's got a great sense of humour too. The one thing that I liked about tonight was the ability to just get a load off my chest without it going any further - friends listen to the sort of problems I'm having and just absorbing them and making them go away for me - that's nice and it helps a lot. I can have a good old whine about my dysfunctional family and come away with a problem shared is a problem halved sort of evening.

Mrs. F. Picked me up from the centre and one of my friends went and tried to wind her up with some funnies about me staying for one more drink - I think he may have been surprised by her resilience :-)

Here endeth the first lesson

It was nice to speak to some friends today and get a load of last week off of my chest. It's good that they know me and were able to just help me get rid of some of the annoyance of the week and hopefully to give me a bit of support that I did the right thing last week. I feel I should be up there a bit more often but I was like a spare part at a wedding really and I spent a lot of time just sitting in the Conservatory or hovering outside to get cool as my parent's house was like a boiler room :-)

At least I'm back home and on the case and can catch up on work.

I've not spoken to my parents today - I've suggested I go back to my Wednesday and Sunday calls (normal) and see how we get on from there.

On a more happy note

We are off soon to my father-in-law's 90th and my nephews 30th birthday party. It will be nice to get away for a short while from the impact of my father's illness. It has quite stirred up dark memories and bad feelings and stuff that I'd buried into the recesses of my mind.

At least work will keep me busy this coming week as we struggle to finish off the business plan and make some sense of it all. It looks great but needs a bit of polish and some fine words at the beginning to make it impact and enthuse the reader. We should heed Steve Job's words - our business intends to shoot holes in everything that you ever thought about the computer industry and disrupt 20 years of a lack of innovation or thought in the products being delivered.

Let's hope that it all goes to plan :-) I also hope that I get an uplifted afternoon - I certainly could do with a lift after the 4 days I've had.

Dealing with it all

It's pretty tough isn't it? I mean my dad has hardly been ill in his life and so all of this is just terrible for him as he never gets ill and when he gets something like a cold he shakes it off and he's back at things pretty quickly.

He can't understand why he can't do that now, why everything is so hard, why he has no energy, how come he's lost 2 1/2 stone in 3 months, how he can't eat as much as he used to, why he can't do things around the house and garden and so on. The car is driving everyone crazy - he hasn't got to that acceptance about not being able to drive it again - it has only been off the drive twice in 6 months. He isn't fit to drive, he doesn't have the strength nor does he have the wit to drive and frankly I'm not sure that the drugs he is on either are going to help him. I've suggested that he prove himself able to drive by walking to the shops and back. I doubt he could get to and from the drive and back at the moment - it frustrates him to walk from one end of the house to the other - I can see it and he isn't stable. He however doesn't see this, he just sees my brother, sister in law and mum telling him he can't drive. They have to reason with him and that's the problem - they are all happy to give advice and tell him what to do and treat him like some naughty kid and yet he hasn't lost his marbles and he isn't stupid either.

The trouble is that no one is thinking things through. I'm "Mr. Calm" and perhaps a bit too much of the ice man if I'm honest but I like to think that if I learnt nothing else being ill with bladder cancer, I'd know what it was like to have it and how best to deal with it. I certainly found being lectured at was not what I wanted to hear. I needed facts, figures, options, cause and effect, actions and outcomes etc. I was able to come to my decisions based on these, through my own reason and logic. In that way I decided that I wanted to live, to go ahead with treatment, to make a decision should things have gone badly about what treatment to have next, to decide which of those treatments would give me the best outcome and so on. Having someone tell me what I could and couldn't do would have been untenable to me.

So I managed to explain this to mum and brother and to also ask them to stop putting the pressure on - my brother especially who considers anything to be some sort of selfish act? Plonker! I mean if dad doesn't want major invasive surgery as it won't give him a good return on investment (you recuperate for 3 months if you are young) and dad may have 6 months to live I mean it's plain logic to me. Not to my brother who feels that he should go through all of this stuff (well he doesn't now as I've laid some heavy facts at his door to think about). I've also told him that I believe that HE is the one being selfish as it isn't his life to make decisions on and he is being emotional and irrational and not thinking things through.

He's bought guilt presents - a clarinet, harmonica and guitar for him - I mean what on earth is he going to do with those when he's got 6 months left to live and hardly enough breath to breathe properly? What were you thinking? The reason behind the clarinet and harmonica are that when we were children my father sold his to pay the bills and we both remember this. However, it's all a bit late now for that sort of gesture. Suddenly when I got there - everyone's buying birthday presents. We haven't done birthday presents for 10 if not 15 years as we only do Christmas. That necessitated me having to dash out and get a bottle of scotch for him - I hadn't planned anything. What were they thinking? Everyone seems to be going out of their way to say "HEY, you're dying!!"

I'm a cynic I know I am but I do find the way people deal with cancer is bizarre and this general ignorance about it is regrettable but you can understand why especially when you never hear of anyone passing away easily do you? They are always fighting or combating or battling cancer. They die after a short or long battle with cancer, bravely fought etc. You don't get a sword and shield or meet cancer on the battle field at all. It screws up your body and it grows inside you and takes over and weakens you and that is it. I can imagine that everyone is very upset - or course they are - but why should they suddenly change their relationship to you or treat you any different. I was probably more wary of my dad being tired out by me being there and told him to tell me to leave him be if it all got too much. We have pleasant conversations and we discuss lots of things - we are very similar in opinion, politics and shared a business relationship for many years but we don't talk regularly, we laugh and joke and we have fun but at the moment, dad's brain is lively enough but he can't play word cut and thrust for long and he can't do much for long. He isn't stupid though and that was what I tried to get over to everyone when I was there. Don't treat him like a kid even though he is acting a bit strange occasionally try and keep your voice normal and explain stuff in easy to digest facts.

So there you go - I'm pretty glad that I don't have to be up with my family for too long at a time. I feel that they all need to get a grip and to wake up and stop being patronising. Having said that to them, I hope they listen and I hope that they start to show a bit of respect to my dad, if nothing else he deserves to have that and he deserves to be listened to and he deserves to be given the facts and the arguments needed to back up an assertion like not driving the car. He can't see it because they've told him. No one has asked him, no one has reasoned with him. I know he can be as stubborn as hell (I have no idea where I get it from!!!) but start to do some reasoned logical argument and it will be indisputable - he'll have to come to the same opinion and if he starts getting illogical in his argument then it's blindingly obvious that there's something wrong and he may then start to see it.

Oh well - I'm hoping that they take my advice and just tone it all back and realise that he is just tired and weak not mentally retarded :-)

I'm very glad to be home

And have my close family here for the weekend - the girls get on great together and so we do have fun and enjoy each others company. I'm being allowed to let off steam and have some child like fun and be a crazy dad for the day so that's cool :-)

I'm glad I went to see my mum and dad and show some support and I spoke to my mum long and hard on Friday to make sure that she knows I can be there - she realises the distance and the cost but I think it is true that she also realises that practically it isn't possible to get there and back in a day so I have to plan things.

I feel pretty helpless to do much more than do what I'm doing - it's upsetting but I've got to get real here - I can't help much other than provide the balanced views I'm doing and a little insight into the overreactions of my brother and sister in law and my mum. All trying their best to help but disturbingly not allowing my dad to consider his options and decide what he wants and what he considers best for himself.

Back Home

A bit of a hold up on the way back but back home and thankfully able to divert myself this weekend with a party for my father in law and nephew - 90 and 30 respectively. That should be nice.

I've come bearing gifts - well - lots of farm produce for us and I need to take in all the things that have happened this past 4 days. I find it disturbing that my mother and brother are treating my dad like some sort of naughty kid (even though he was like that when the fever was rampant). However, I may have got it through to them that they need to be reactive to his needs not proactive - in other words the last thing a dying man needs to be reminded of is that fact. If you think an electric bed is a good idea then have that idea ready for when he finds it difficult to get in and out of the bed he is in now. Don't get him it, make him change into it for all it does is remind him that he is ill. If you'd have done it to me I would, like him, be bloody furious.

People do things in "good faith" and yet they don't think of how the person who is ill and facing death is actually going to feel when they act out of the kindness of their hearts and kick him in the teeth at the same time. You can overdo the love and support and I hope that, if I've done nothing else, that I've stopped them trying to over protect and try and wrap him in cotton wool, he has pancreatic cancer - he isn't going light in the brain!!

My Week

Was it a good thing to come up here? I think perhaps it was right to do that and in a way I would have kicked myself if I hadn't. I found it amusing for one of my friends to say that I had "now done my bit" which I found amusing and disturbing at the same time. What he meant was that I could perhaps stop kicking myself for not being there for dad whilst he also knew that no one had come down and seen me :-) But at the same time it belittles the act too.

I would have felt bad if something had happened this week and I hadn't made the effort. In a way I feel I should be here more but it really isn't practical. We would all like to "be there" and yet in reality that isn't possible is it? Ideally I'd like to be here for my mum and dad for as long as it takes - it isn't going to happen.

I feel my mum's pain and my dad's confusion and upset and the wider family - especially his two brothers, one older and one younger. I feel somehow that I need to do more but you know what, I also have my own things to do as well. The trouble is that my mother and brother (and sister-in-law) too are treating dad like a kid - I've "had words" about that and suggested that they treat him like the head of the family he is and give him a bit of respect. He doesn't need to be told what to do - he needs to come to these decisions in his own time and when he needs to. He doesn't need an invalid bed now - he may do later, leave the suggestion that we will do what is necessary to deal with his condition and respect his wishes. Everyone wants to advise and push him and yet he needs to make some decisions in a logical fact based way. I know he shouldn't drive the car and so does he but he needs to arrive at that decision based on facts about his reactions, his body movement and his strength - he knows he can't walk down the garden let alone drive a car but he doesn't need to be told.

So - I've done my bit and I know I've got to come up here again and perhaps only a few times more. I've no idea whether I'll be here at the end - that's not my choice, that's the predicament I am in because it wasn't me that moved up to this area of England. It's desolate farming country a million miles from the sort of countryside I live in. There are some amazing houses here but they are rotting away and yet it must have been some place given the scale of the buildings I saw on my walk today - including a house that has to be 17th century that is just what I have always dreamed of owning - a place probably older with turrets that appears to have grown organically and has bags of character. The trouble is - what on earth would you do up here but be a farmer? There really isn't much else I can see to do.

So I've got mixed feelings - it could be the last time I come here I suppose. However, I hope not but I don't think I could hack the day I had Tuesday - my poor old mum and brother had a terrible week with dad. Every now and then dad goes off somewhere in his mind and drifts off and back again but normally he is tired and I'm concious that perhaps I can only just be there and around for them - maybe that's all that is needed - just to be present.

Oh hell what do I know :-) Mind you sat in the bar tonight and there was a conversation going on following a wake for this chaps mother who had just died of Pancreatic Cancer and they mentioned Steve Jobs and Patrick Swazy and of course that just re-enforced what will come in the near future. I don't see dad living beyond Christmas unless he has a very strong will and starts to take on some sort of diet and treatment that may help - I find it unlikely that it will happen I think the decision to die has been made.

I should have been at the Guildhall this evening and I've only just thought about that. It would have been a wonderful event but I'd rather be here - it's dad's birthday tomorrow and so that is important I think. Oh well - I'll be home tomorrow night and I think I will be quite morose and quite upset when I get back there - it's been a strain and it's been emotional :-) I hate what cancer has done to my dad and the frail man who stood there today and at one time he was almost child like and you never want to see your dad in anything other than how you remember him.

More later when I get past the upset. However, I'm not as cut up as I could have been I think.

Ooooeeeerr

I got my tyre fixed this morning and got to my parents a little later - dad was in bed and it was nice to see him a little better and the bruises receding. I then went to the shops for them and dropped of the notes to the doctor, picked up some scotch for dad's birthday and posted some letters and had a nice breezy walk.

I left earlier today as dad got quite tired - it just floods over him and that's just the way things are. It's so frustrating for him and so I got out when he started to get tired just before his tea. My mum wants to feed me but its too early for me.

I have a list of things to get tomorrow from the farm shop as it is so cheap around here. I should be able to do some pickled onions over the weekend with a bit of luck.

I'm sure I'm going to be really cut up when I get home tomorrow - I've had to be massively diplomatic so far. Tomorrow my brother and his brood will be there, dad will have his last birthday with us and I'm sure that the moment will not be lost on anyone in the room. He laughed with me today and gave me my inheritance - a bag of sweets :-) bless him.

Of course Steve Jobs dying today also hit home especially as he had the same cancer! Oh well tomorrow is another day.

Progress

Well Dad's home, I brought him home with mum and my brother late on Tuesday afternoon. He was being a "bit of a handful" and not taking things seriously, he was told not to drive but the doctor and the nurse weren't really that good at delivering this message but frankly, I cannot see him ever getting behind the wheel and I think today that he knows that.

It's difficult to understand that this little step is just one of the things you have to give up as you head towards your destiny. It is one reminder that you are losing your independence and that's why he wants to hold on to it. Of course, he isn't thinking clearly on this and there are lots of other problems like this. The interesting thing is that everyone is dealing with this differently and Dad doesn't do "being ill" so was surprised to see me yesterday and also that I was here for the rest of the week. In a way - I had to come up and he could have been in Hospital all week but I'm here and was able to fix some stuff in the house and also baby sit dad whilst mum did some chores too. It was nice to wander out into the Conservatory and let them both have a sleep and catch up. Things were a lot less frantic and a lot better today.

Dad looks so much better after just one evening of real sleep. Hopefully he can build on this and just have a stable time from now on.

Now the bad stuff - well he does look much thinner than when I last saw him and he is much much weaker. I can see the fear and also confusion in his eyes, I know him of course and I've never known him be scared before.

I'm glad I came.

That's fixed then

I'm off to see my folks tomorrow at the crack of Sparrows. At least I can take over from my brother and sister-in-law and do some supporting chores if nothing else it will give me an opportunity to see dad and mum and try and assist.

I've got my Hotel sorted out - well my brother may need his spare room :-) yea right! I have to laugh about it - he even recommended various other hotels I might like to check out :-) At least I can get away at a reasonable time and spend some time in a Hotel Bar having a cool beer and thinking stuff out. I've got my friend bringing me some literature tonight. He works for the Samaritans and it will be worth leaving the leaflets to hand in case they need them - sometimes it isn't easy to speak to family and these guys provide a vital service to just allow you to chat and talk and get it off your chest. They are well trained and know how to get you to talk about yourself and your feelings etc. A lot of people think it is only about suicides which of course they do deal with but also dealing with other difficult situations too.

The Mirror on what might have been

It sounds strange but I looked at my dad a few weeks ago and I saw myself. I saw what might have happened to me had they caught my cancer a little later than they did. It brings back much of the trouble of that time to me and in many ways I dread going up there this week. I think everyone is putting a brave face on at the moment but deep down inside I'm certain that they fear what will come next.

Me? I'm reminded of all the stuff I go through and how fortunate I am to still be here. I'm not saying it hurts any more than it does to the rest of the family but it certainly hits home a lot more to me. The spread of the cancer and the speed at which dad has changed in a very short space of time is frightening and this latest period in hospital may herald a pattern (I hope not) for the future.

I'll go up in the morning to see him and see what I can do this week. It's going to be a hard old week but I should go. I may have been disturbed by the fact that no one came and saw me in all the years I was ill but it doesn't mean that I have to behave like that.

Spurred into action

I spoke to my brother and I think I ought to go up this week if only to share the load and take mum to and from the Hospital and sort that out. It sounds dire trying to find a parking place and all that! Typical hospital - pretty new one too and not enough places to park - who designs these things FFS!

Dad's a bit better, has been able to get up and wander around himself and has started to get around without the aid of a walking frame so a good sign there.

It always surprises me that I have to stay in a hotel when I'm up there considering my brother has a spare room but they may give you an inkling of why things aren't exactly great between us. Anyway, I'd rather pay to do that I think :-)

It's all a bit difficult in terms of work etc but they have wifi and I have a PC and a phone so that can work :-) I hope to get away pretty early so as to get to my mums in time for breakfast and so I can do whatever is needed. Additionally I'll be there for my dad's birthday which will also be good (and bad) all at the same time. I have no doubt that the Elephant will be in the room at that time.

It's Late and yes I'm still up

Pondering the words I heard my mum say tonight and how sad dad was that he wasn't fit enough to come home. He knows that it will be hard work for mum and I can see that he's beginning to start to think things through in a pragmatic way. A few weeks ago he wouldn't have seen that he was soldiering on as if nothing had happened.

I caught a moment in mums voice and it's kept me up to gone 1 so far and I think it may be time to go up again and see him. This is the bizarre thing, it's only 14 days since I last saw him and so much has happened and changed. That's what is alarming about this, it is as if someone has flipped a switch and dad's gone from one state to another and transformed. It reduces us to helpless and weak individuals and that's not how he was - ever. I find myself listening to various pieces of smooth classical music and working out what I can do this week and how long I can go up for.

I'll take a view on it tomorrow but I think the hidden message is that dad may be thinking he isn't coming home. Whilst he is up to his usual laughs and jokes he actually doesn't have the energy to get up and down and move around fully unaided. That's got to be hard for him to bear and perhaps I ought to get up to see him as soon as I can - I don't want him to interpret that as some sort of last gesture either. It's hard to know what to do and of course the business is at a critical state but then again I'm sure that me thinking about this rather than taking action will materially affect it anyway.

It's better but it's worse

Dad's improved in terms of his attention and his mind and he is very very slowly getting some strength back but not enough to get him home yet I fear. He is very weak and needs assistance getting around. He can get about on his walking frame but it is a slow process and so he knows, and told my brother, that he felt he would not be coming home too soon.

I'm in two minds now what to do about this and whether I go up this week. It may be the case that I take a view tomorrow and Monday and make a decision and just go. I can ring around and get a Hotel easily enough, I have their addresses and details all written out now.

I fear going as I fear it may mean that if I'm there he may read it all wrongly. Perhaps not, I probably don't want to see what has happened to my dad. Let's face it, I only saw him 13 days ago and he was fine - a little thin but otherwise fine. That's what is overtaking me, how quick this all is and how fast everything is moving.

Talking to my mum tonight it was pretty obvious that there is an acceptance that things aren't quite what they should be and dad's blood pressure is going up and down all over the place. Until they stabilise him, he isn't going anywhere.

What to do?

Tearing Down My Defences

Whilst dad is having his own problems and living out the final chapter of his life I wonder whether I'm recoiling from the very real feelings that go back to my time with the early stages of the disease and the things I lived out in my waking and sleeping dreams and the visits of the Black Dog and the barriers and walls I've built up around myself to protect me from it.

I'm certain that I've built a legend and a narrative about me illness that is for me and for me alone but it helps to deal with it personally and when interacting with others. There's a tale, a weaving of truth and fantasy, of anecdotes and experiences that I hold onto as "My Story". It's part of who I am, it helps me deal with what happened to me, it allows me to explain what happened in my language and to suit me. Some of it may be blown up or down to suit the story telling but it is a shell that wrappers me and keeps me from harm. What I see and hear in my father's situation is all of the things I dreamt would happen to me (that didn't thankfully) but other things remind me of the loneliness and the doubt, the fear and the worry, the pain and the anger, the Black Dog and the Little Voice, the shame and the worry.

I see myself dying with him and I don't like it at all it really pulls and I see myself holding back and trying not to get too involved emotionally as it will tear me apart. I'll need to be at my best in the event to deal with the relatives - mum already can't deal with them and my brother is a lot closer to my parents than I am and so I will need to hold it together for him too. He's actually stepped up to the plate magnificently these past few weeks - it hasn't been that long but it feels like it. I may have reservations about other members of his family but he's done well and I have no doubt he'll feel particularly wiped out when the inevitable happens.

Me - I'm afraid that bits of my defence are falling apart now and that I'm questioning things - I don't tend to do things on an emotion I tend to do things logically - one one hand I want to go up and see them but on the other - what purpose does that serve? I'd rather wait until I get called up or when there is time at home. By the end of the weekend I think I might be able to forge a strategy about what to do for the best.

A little better again

Apart from his temperature and blood pressure going up and down all the time, dad's back with us and beginning to face facts. He's too weak to come home at the moment but he is getting his head back into gear. He has been told to use his walking frame and so he is actually doing that as the Doctor told him, not one of us. He will also be told that he cannot drive the car too as this is just outright dangerous.

He doesn't remember much until yesterday and so a few days are completely wiped out (again). The antibiotics appear to be doing their thing and he is able to get to the toilet (in time) with assistance and so that too is good. He realises that he is too weak to come home and he understands that he needs to listen to what people tell him. He still gets confused and forgets (or makes things up).

So - he's better and with it but he's lost a heck of a lot of weight, can't get around without the frame and still has something not quite right with this infection he's got. I see the chance for Chemotherapy retreating over the horizon as this would have knocked the stuffing out of him and given his immune system a severe shock.

I'm still battling the guilt of going up there or not. Does he need loads of us around his bed or do I wait until he is home and just spend the odd hour there? What will I achieve and so on. I can go on beating myself up all the time about this but perhaps I'll just have a think about it over the weekend.

Perhaps today we will find out a bit more

Like is dad diabetic, how far has the cancer spread, are they going to start to treat the pain he is beginning to get now, are the anti biotics working and so on. It's all lots of questions and we don't even know if he will be out of Hospital this week or not. He's been in for 3 days now - it feels like weeks!

I spoke to mum and she was upbeat and getting to grips with things now. Not sure if my brother has been able to do any work this week what with running around to and from the hospital. I'm still in two minds what to do really - I've no idea if going up there is going to help or hinder things and whilst it's my dad, I also have my own stuff to do. Having worked for 18 months without pay doesn't leave me in the greatest of positions to be up there and staying in hotels etc for any great period of time. Sorry that sounds callous and it isn't meant to be it's the way it is and what use am I going to be anyway?

More later no doubt.

So now things slowly change

It is amazing how quickly things change n'est pas? I spoke to mum and brother tonight and Dad's better, not great but has eaten a little, is being cheeky (always a good sign) and sent everyone home at 8 so he could sleep. That's the upside.

Downside is - yes it is colon cancer and yes there's something strange going on with his stomach area which needs sorting, his white cell count is down a bit and that is where we left it apart from he needs to have or see a neurologist. 18 months ago he went to the GPs with this balance problem and the found nothing. Now we have balance and memory issues - which aren't Parkinsons they say and they are also pretty certain it isn't Alzheimer's Disease either. However it is pretty serious as he keeps falling flat on his face or falling out of bed etc.

I've been out with a friend who has very kindly listened to what I've had to say and very kindly just been there for me. He's one of a very small handful of people who now know how I feel and the way I've been beating myself up over things. It was useful to have the conversation and to come away refreshed and to then speak to my brother and my mum shortly afterwards.

It is all a bit fast

I know from previous experience (2 people I've known have died from Pancreatic Cancer) how fast it can be. Both were discovered with late presentation when it was pretty much outside and in their system - one died within days and the other in around a month and he was only 26!

It appears to me that this is progressing ever so fast and my brother tells me that dad is now very thin and that he'd lost weight since I last saw him which is only 10 days ago. We've gone from knowing that he's pretty ill and terminal to being in Hospital and in not great shape in those 10 days. If he doesn't eat today that will be 3 days without food and whilst he is drinking water and being hydrated today may well turn out to be one that sets the course for the next few days too.

He's confused, my folks are stretched and emotional and I'm just beginning to feel bad and a little tearful as I feel for his and my folks pain and the fact that I'm not there. I'm waiting for and hoping that I'm not going to get the call from my family to go up this time. I really hope that this isn't it and that he will get over this, go home and slowly fade away. The longer he is in there though the less convinced I am about that.