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.

And worse

It's close to 11 at night and I've just spoken to my brother who has filled me in on the latest. Dad's managed to climb over his bed rails and crash to the floor injuring his face! He doesn't know where he is and he thinks some of his fellow patients are ex-workmates and it is all getting very sad now. Mum is pretty distressed, of course, and well we are just going along with it all. It just makes for a terrible time for everyone, apart from dad who is out of it a bit and isn't really sure where he is, or why he is there but does know and accepts that he has cancer now.

I suppose we consider that we get the bad news and just sit back in our chairs waiting for the end to come and then for a few days retire to bed, call the family around and breathe our last and actually it isn't like that at all is it? This is just horrible and draining on the family and my brother and sister in law and mum are taking the brunt of it.

I'm sat here at the moment toying with the idea of going up to see him but I can't see that it will actually help the situation one bit. I need to find a hotel and with my inherent love of hospitals (even though I am much better now) it isn't actually going to be of any use, other than "being there". I think I just need to be on call at the moment and to be aware that I could be called up at any time. I'll sort out some phone numbers tomorrow in terms of hotels etc so that I can ring around and get that done.

It's all going back to the guilt trip stuff again and if they were here, local, even an hour away I could do something. If I were to go up for the day I can kiss 6 or 7 hours away just driving. It's just the way it is. I'm hoping that there is improvement tomorrow but it does now sound like there's been quite a significant progression and that the cancer has spread to his Colon and if that is the case then it's likely that other areas are getting infected and compromised too.

It's a sad way to go and it's never nice I suppose to consider that it's your dad and there's a highly intelligent man, a very strong man too laid so low and looking so thin and helpless. Let's hope they can sort him out sufficiently so that we can get him home - where he'll be happy and let him end his days there if possible.

Today I think it dawned on me that this is a turning point in his cancer and what is frightening is how quick this is all happening and how this particular form of cancer is so virulent and aggressive.

And it gets worse - apparently

It looks as if dad may have Colon cancer too someone at the hospital suggested. We wait to hear about that later today. It appears the hospital and the ambulance people have all been very good which is fantastic news and nice to hear. We should find out today a bit more and what they are going to do. Dad needs to have mum and my brother there so he can arrive at a decision as at the moment he isn't understanding everything and is a little "out of it". Maybe that's not a bad thing? I don't know. Mum sounded OK this morning and had managed to get a good night's sleep which is also useful as she had been up most of the previous night.

More later - no doubt.

My Breaking Point

Tonight I felt bad - I felt bad because I'm stuck here hundreds of miles away from my family that moved from this area (where I've lived most of my adult and pretty much of my childhood years). I feel helpless and I feel cold and useless. I feel like I'm making some petty point, scoring some points over my family who have probably only come back down this way twice in the ten years or more they've been away from this our local area, where we were all brought up and where we all used to live.

I know it is not true but my brain is telling me that I'm some sort of "second class citizen" some sort of "shit" who can't be bothered with his immediate family and who isn't playing his part.

It is my mind that is playing out this gladiatorial battle of wills. I'm the wronged party and then the next second I'm the wilful miscreant who isn't "doing his duty" and running up and down the hundreds of miles to look after my parents. Then the "little voice" is saying in my ear "When did they ever come and see you when you were ill?". "What did they do when you were curled up in the foetal position recovering from your treatment" and suddenly the little devil sits on my shoulder and whispers into my ear what a "Heartless bastard" I am and I cry. I cry because I feel so bad about this situation, I fear that my words are unheeded and that a decision my father has made has sealed his fate. He doesn't want treatment, operations or anything else, he's accepted that his time is run. The epiphany I see is that this is far from the truth and that there are other ways but dad's "old fashioned" he is set in his ways, he understands the facts one way and I understand them another.

It's all a bunch of bollocks and just too upsetting and too confusing to discuss. It is because of family, history, science, fact, fiction and many other factors that I now realise that I can't save my dad. I'm no healer, I've survived cancer and "so what?" Can I save my dad, can I save anyone? What qualifications do I have, how likely is it that I'm right about the Budwig Protocol, will that help him, will he believe it can and so on.

That is what will now send me to bed tonight upset. I am human, I am fallible, I am useless, I can't save my dad, I can't get to him in 10 minutes, I can't ease his pain, I can't do a lot. I can talk to them and I can probably help that way but other than that - I am utterly powerless to do anything. Test my faith? Of course - it pushes it to the utter limit and beyond.

Tomorrow will be another day and a defining one at that. I hope for good news and some sort of resolution. I fear that my father has opted to die, give in and succumb. It was never in my plans to do so and I'd have like to have thought it wasn't in his either.

I am rambling on - it's the way of it - I want him to die on his own terms, in his own way and without the complications and ugly hanging on bit - he will not want it like that and neither would I like my family to go through that. As for me - I'd like him to think that he could join with me to defeat this but I fear that he is beyond that level now and that his mind is set on the future none of us want to see.

So I entitled this my breaking point and what I meant was that tonight I really have, for the first time, realised that I am going to need to step up to the plate now. I need to put aside my silly prejudices and to just concentrate on the situation to hand. Too many people are taking the easy shot at me and it hurts like hell that I'm not nearby, that I'm not involved, not that emotionally attached either and that the way they treated me is diametrically different to the way they'd now like me to treat them. They can't have it both ways.

Mixed Evening

I was out with my school chums - it was a lovely evening but was interspersed with news of my dad and his situation. It isn't great and it isn't good but it is so difficult to judge - at a distance - what to do. I mean I can drop everything and go up there or I can wait to hear what is needed and do something then. As it is, I'd like to go up but what actual good (other than physical presence) can I be?

Here's the problem. What earthly good am I being there. I can't sit with my dad, there's visiting times etc. I can sit with my mum when needed I suppose? I can be there when required but when is that? I could just move up there I suppose. None of these are actually possible when you think about it. It isn't going to happen and whilst I fully expect to get the call to "get up here now" that isn't where we are, but I'm not absolutely sure where we are if I think about it.

I can imagine that mum isn't great as she is at home worrying. My brother is at home worrying and I went out of my way tonight to get a few extra beers down my neck and lean on my friends whose fathers have both passed away. They were great tonight and I'm sure they will be good for me later this year (or next) or whenever the time will be. It is a problem, it is a worry but my friends will be there for me and help me get through this.

Talking of which, let me mention a very good friend of mine who is a Samaritan. I have so much regard for him and he is one of my oldest and dearest friends. He gives up his time (and lots of it) to listen to people who phone with all sorts of problems. They give their time freely and I'm completely in awe of these people who just do this on a voluntary basis. Having met some of them I'm very privileged to have been in their company they are truly wonderful, self giving people who do things that you and I could never do. I feel that they may be a good help to mum, dad and perhaps my brother in the days and weeks ahead.

I think that my experiences have insulated me at the moment. I feel that I am thumping out the logic, reason and stability messages, the rock in a hard place but actually I found myself quite upset today. Not for the reasons you may think though. Dad's got to come to terms with this. My brother is taking the brunt of it and his wife is also helping. As you are probably aware - I'm no great fan of hers but she does what she does, she's pragmatic and strong and you need that too. Me, I feel for my mum and the hole that's opening up. It isn't her wish that the past 10 or 15 years have been lived in the way my father wanted it to be lived. She's not one for not participating but has done so to keep the status quo. She has given up her life for dad and in a way I want her to then go on and free up and go and have her own life after giving her all to dad.

Her giving it up meant that they haven't gone on holiday for years. That she hasn't been to family dos for years and so on. In a way I will rectify that when dad is gone as long as she decides that that is what she wants. I think she deserves some time out and a few good holidays if you ask me. "That side" of the family never came down to see me when I was ill, never came to my birthday party or those of my children and never made it down for Christmas etc. I haven't spent Christmas with my family for 15 or perhaps 20 years.

What I'm annoyed about is how "upset" I've become about this as it has never worried me before and it hasn't been important and yet now it is. There's no reason for it apart from the expectation that somehow it is I who have to change my ways and the relationship now. I've never changed, complained or got upset about it until now and suddenly I'm the "bogey man" it's my fault that I didn't move up there, that I happened to still live in the same house I've lived in for 23 years whilst they've all moved three, four or five times and each time further away from me.

I feel terribly guilty - I feel that I am beating myself up all the time and I'm sure I shouldn't be. I feel awful, I feel that I wont be there in time when dad dies, I feel so many terrible thoughts at the moment that it doesn't make me sleep and yet I know that logic defines that there isn't anything I can do. No one suffered my pain with or for me when I was ill. No one drove down to see me. Friends I knew came from Europe to see me but my parents never came down. I went to see them. I reassured them I was all right, I even took my family up to see them as well.

I just feel terribly guilty and wonder why I should - when I was ill no one, but no one came to see me - I'm not saying that it's right but just that I don't see why now it should be so different or what has changed. Of course it's my dad, he's not got long to live and I WILL go up and see him as often as I can - it's just the way I'm being treated at the moment which is somewhat galling. Perhaps I should just rise above it all - perhaps that - after all - is the way forward.

And Now back in Hospital

Oh dear, poor old dad - he wasn't at all well and now he is being taken by Ambulance to Hospital - that will please him NOT :-(

I spoke to mum and suggested that she checks with the nurse what he is and isn't allowed to eat - poor chap. I think the Pork Scratchings over the weekend couldn't have done a lot of good and then they had a meal of Roast Pork yesterday and I'm sure in my mind that the Pancreas is the organ that assist digestion of fat - although I'm probably off the beam there.

My brother has left work early to go and see him and see what is needed. An awful lot is resting on his shoulders at the moment and in a way whilst I'm still feeling pretty guilty about it and am rationalising things in my head about using my time sparingly in going up there - it costs me not only my petrol but also tends to be a night in a Hotel - well you can probably guess it really starts to rack up even if it is just me going up there. But I'd better work out what I'm going to do soon as if this continues I can't see where the light is - it just appears to be one thing after the other. For someone who never had days off in his life, hasn't been to the doctors or a hospital much he's making up for lost time.

Oh Dear

Dad's had another bad turn - almost the same as he had last time on return from the hospital, not quite so bad but enough to get the doctor out and some serious medicine needed to sort it out. My brother reckons dad's lost quite a bit of weight this last week - and he was thin when I saw him so heaven knows what he is like at the moment.

I'll clear the decks here and have to work out my diary to see when I can get up and see him. Maybe this weekend if I can find a room. It's all pretty messy at the moment, I think this constant illness cycle will just take it all out of him. It sure is distressing for him and my mum and of course my brother and his family as they are all there on the spot.

Sleep at last

Phew - I needed a good night's sleep and also having dozed in the chair must have helped me to catch up too. I really do need to recharge my batteries emotionally. Emotional blackmail isn't a nice thing to suffer - it's a sort of bullying and it may be that it is how other people deal with it or how they've built up a picture in their minds about us. Paranoid - moi? :-) Just because everyone's out to get me doesn't mean I'm paranoid!!! - One of my favourite sayings....

I'd be lying to say I get on well with my brother or his family. We share entirely different value beliefs and we don't see eye-to-eye on many other things either. We may look alike but we are chalk and cheese in nearly everything. My mum's never understood that but my brother is very like my dad and they live a sort of hermit like existence with very few (if any) friends, hardly a social life to speak about and they don't join in with anything leaving them very much work and home and that's your lot. Not that I'm a party animal by any means but I do go out a bit and I do have a handful of very good friends and a "circle" of people that I know quite well and another circle that would encompass people I get on with reasonably well etc.

Maybe I shouldn't be surprised by all of it? Mind you I'm bloody annoyed that after assuring me they weren't going to celebrate my dad's birthday and after I've made other arrangements they now are going to do so and I can't go. It makes me feel really bad especially as it could be his last birthday meal... I suppose though that's just some sort of regret mechanism guilt trip. I just hope my dad doesn't take it that I wasn't interested or had something else to do. It feels like transactional analysis management style, playing politics with the situation and that is just completely abhorrent if they are making political capital at this particular time.

Families! Sometimes you can hardly believe what they get up to and for what exactly? As if it isn't a difficult time enough.

Weekend

That was fun - a weekend in Margate with Flocky Bicep and another friend and we had our usual strange times there. It is always a bit of an unusual experience in Margate, I don't know what it is but you meet a whole swathe of different people. We had an interesting crawl of the pubs including one that we always go and see as it is just, well, how can I say this, weird would be an understatement. We then wandered into town but it looked as if our favourite Chinese Restaurant had close down so we ended up at an Indian Restaurant which was OK but I have to say I wasn't particularly clever the next morning. We went to a micro brewery which was nice - some great beers and ciders but the last cider I tasted was so dry that it felt like a Harry Potter Death Eater was sucking all the soul (and moisture) out of my body. I had to leave half of it which is almost unheard of.

We were up early next day for the Provincial Meeting and met a lot of people we haven't seen for some time and then had a beer with friends (after the lunch) went back to the Hotel and went to Broadstairs for the evening. Our taxi driver was great giving us a running commentary on where to go and what to see, she warned us away from the "youth pubs" and suggested places to eat etc. We eventually ate at a very nice Restaurant which was reassuringly expensive and had a wonderful meal. The local pubs however weren't that good but the wine bar we frequented last time we were there was very good.

We had breakfast this morning and came home in time to allow me to see the Grand Prix and to fall asleep in my chair for the remainder of the afternoon. These late nights and all day sessions do take it out of you though!

It was nice to sit outside the Hotel on the Terrace on both nights and chat to my friends about my dad and what's going on. I have some ideas that I can pass on based on things they said and also I don't feel quite so bad about myself as I did before I went. Let's give you a flavour of why I should feel bad. I phoned my brother and asked where they doing anything for dad's birthday in a couple of weeks time. The reasons was that it is my father-in-laws 90th and my Nephew's 30th that same weekend and my sister in law was planning a party and that was one of the days. "No we aren't planning anything" was the reply so I went ahead and have now booked that all up, the girls will be coming home and everything is planned and Friday I hear from my brother that they now are planning something and can I come up? So there you go, it's probably his last birthday and they are having a meal and I - and none of my family will be there.

I also had one of "those" conversations with my brother's wife. When I phoned up on Friday to let him know I was away for the weekend but on the phone she answered which surprised me. I said that he's normally working at home on Friday and then got the well because of your dad and us running him around he had to go in today. I can't impress upon you the way this is said to me but so far, I've been pretty good about it, I've been pretty much one for giving the benefit of the doubt and for exercising the very real possibility that I'm pretty sensitive about my father dying. Therefore, it may well be me that has the problem. However, I was pretty put out with the way these things are happening and the way that I'm being made to feel guilty about this or that there's some "conspiracy" which is just ridiculous right? When I spoke to my brother I told him that I was somewhat surprised that, after I'd spoken to him about being up for dad's birthday, explaining my situation etc that they'd gone ahead and booked it and that I'd just found out about it after organising or agreeing to a date down here. It had been a last minute decision apparently - well in two weeks time it would be a last minute decision.

I gotta stop getting worked up about this. I'm really waiting to hear what the outcome of the meeting on the 4th October (don't worry we'll look after your dad) exposes. Dad says he doesn't want invasive surgery, my brother says that he may now have slightly altered his opinion on this but we shall see. My brother tells me that dad now believes that there is something wrong with him, by which I understand that he now realises what he has, is coming out of anger and denial and beginning to think sensibly about his options.

I just hope I can get some sleep again tonight without the aid of alcohol as I hardly slept a wink on Thursday night.

Bit of a Defining Day Today

With Dad now having said he won't have invasive surgery it leaves very little option for him and in some ways surprises me as I would have thought the bypass surgery wasn't that invasive and would help him out long term as things deteriorate / progress towards their inevitable end. I am in no position to argue his logic or his decisions as long as he has made these given all the evidence and all the ups and downs that a no decision will mean for him health wise.

I'm not sure that it would be a decision I'd make but then again, I'm not 81 years old and I'm not in the same situation at all. I find it a disturbing situation because whatever you feel, no matter what happens and no matter how prepared I am, it is still my dad. That makes me quite sad inside and somewhat worried as, as I've said before in this blog, I do see myself in him sometimes and I wouldn't want to slip into that frame of mind in years to come.

Respecting a Decision

We all have to make decisions and we all have to accept the consequences of those decisions. I chose to survive and I chose to "fight" although I've never been entirely comfortable with that analogy. You can see how it applies sometimes but it was more "stubborn resistance" in my case :-)

Dad's planning on making a decision that I think will hasten his demise. He's accepted his fate and he doesn't want to have any procedures that will result in a small pay-off for high tariff discomfort. I can understand that too. It's probably me but I'm hoping that the full thing is discussed so he has all the facts to make these decisions based on those. If not then to me it appears to be a rash decision. In his place I'd go for the bypass and not the full operation (I can understand that) just so that some function can continue.

I've been through all of that - there wasn't a "choice" for me, I had to have the operations, the treatments and everything else that goes with bladder cancer. The insight I have now is that it is YOUR cancer and your body and whilst it appears to many around you that you are being selfish well that's just tough sh1t really. It is your illness and only you know how you feel about it. It's unfortunate that those around you are going to get hurt at the same time but they aren't the ones with the disease nor the prognosis and so it isn't their decision. It's terribly hard on my mum of course and I can't imagine its a walk in the park for dad either. As for my kid brother and my sister in law - well it is going to be tough as they have been close to him for the past 10 years and they see a lot of them and let's face it, they all moved up there together so they've an investment (if you see what I mean and don't think I'm being callous).

All the players, me included, have a viewpoint, an investment but no say in this. That's hard isn't it? I mean you've got to make a decision that will p1ss off all your loved ones. You can only hope that they've made the right decision, for the right reason and ironically can live what that decision. My parents have been married for 55 years (I hope!) and they've really only ever had each other, they have no friends and I imagine they hardly know anyone locally and that's a bit of a worry for me, not now, but for later. The point of all of this is that I'm probably the only one of us who respects his decisions (as long as he knows what the consequences are) and I very much doubt that anyone else gets it. The trouble is I hear myself talking all sensibly and grown up about it and I sound (to myself) hard as nails. I'm certainly matter of fact about it. Whether this will hurt me in the long run or not I don't know - it's how I'm handling it now and we will just have to see how it turns out.

Feeling Better

What a horrible cold that was - - it made working almost impossible but at least today I'm somewhere nearer normal (for me that is). Spoke to my dad who was in good spirits and to my mum who is looking forward to hearing from Macmillan Nurses as she agreed with me it would be easier to talk to them without the attached emotion. I'm far too matter of fact about things as I've been through it before and also it's my own protective mechanism I think. It's my way of trying not to be hurt.

I'm pretty upset about dad, of course I am but that doesn't mean that I can change things or that life will not take its course. That's the tragedy of all these things. Dad reckons he isn't going to have anything done to him and if that's the case, then things are going to go down hill very fast indeed. The surgeon couldn't do the procedure yesterday and so they will (or might) suggest that they do a bypass. That's great it would ease the problems and isn't like a Whipple operation but he's suggesting that even that is more than he wants. It is his decision and as long as it is made in an informed way then we all have to live with his decision. Whilst I question his decision making process at the moment (wanting to drive the car when he clearly shouldn't IMHO).

I now see that I've built a wall here that is needed to hold myself together a little bit. It's a little bit selfish but as you can imagine this opens up stuff that I've banished from my mind or carefully tried to lock into an area of my mind to forget what it was like for me and my family. I can see it kicking off again and I'm just putting up an arms length type approach so that I don't injure them or me.

The Cold from Hell

Has been awful today - headache, eyes hurt, nose blocked, sore throat, intermittent flu like symptoms and I just can't get my head / nose unblocked and I hate it.

I'm also struggling with what to do about my dad and involvement and all that sort of stuff. In a way it's important to get up to see him as often as I can but there's difficulties all around with other stuff at the same time. Ideally, if I could perhaps go there regularly and continue work it would be good - I'm smack in the middle of the important stuff (for me and my family and getting money after 18 months of getting no money!). OK money isn't everything but I have to play a series of balancing acts here.

I don't actually have what you'd describe as a close relationship with him anyway - seeing him once or twice a year normally and whilst it may be a comfort for me to go up there and see them it probably isn't letting them have a real chance to resolve whatever they need to resolve between them and I'm thinking that it is important for them to do that and get out of the rut they are in at the moment.

Oh well - no doubt when I get over my cold and can think a bit straighter I can see if I can address this quandary.

Didn't happen

So they couldn't actually get to the original stent due to swelling around the area which may have been caused by the infection he got a couple of weeks ago so they didn't follow through on the procedure and dad has to wait until the 4th October to go and see them and find out what the next steps are. It may be that they need to do a bypass.

My brother asked the nurse about some support and luckily the Macmillan Nurses will now become involved as it isn't just about dad. Everyone is affected to a greater or lesser extent. These nurses are involved all the time and are able to offer palliative care and to assist the near family to come to terms with this. I suppose I ought to ask myself where I am in terms of this process at some time? It's a little difficult as I'm a survivor of course and at the moment I've to let them try and come to terms with things amongst themselves - I'm offering little in terms of assisting that process - how can I? I used to hate people advising me on how I should react and behave and I'm at the end of a phone not on the scene. I haven't been on the scene for them for 10 years. I'd dearly love to get stuck in and go and sort stuff out for them but what good does that do?

It's a sad state of affairs of course - isn't everyone of these things tragic - but what can you actually do that's not going to seem like you're lecturing or telling them what to do and frankly it needs each of them to work it out. I'm sort of stuck a bit as I'm not around for some time now to get myself up there and sort out the day-to-day stuff.

Dad's about to have his procedure

They are swapping stents over in his Bile Duct (I guess) from Plastic to Stainless Steel. It's a small procedure but one that requires knocking him out and for recovery for some hours prior to going home.

Hopefully that will be the last procedure of that type they have to do. I don't know what they are going to do after this either. The "Elephant in the Room" got in the way on that one and we didn't really discuss specifics.

This cold is just pants! I feel absolutely horrible today - I had a bad night's sleep and now could easily drift off. I'll try and do a bit more work but feel that I might end up in my chair asleep :-)

Something a little sad and uplifting all at the same time

An article about terminal cancer. It's entitled: Philip Gould: 'If you accept death, fear disappears'

I wonder whether that is so? I think that perhaps when you've come through the steps he has, you can see why this would be so. I also think I can understand this too. It would be though a very hard thing to comprehend if you haven't had cancer or something equally nasty.

The cold from hell

Just what I needed a cold - what unhealthy sod gave me that?!

Blast it - I hate being ill and some SOB must have passed it on so both Mrs. F. and I have it. I just hope I haven't given it to my Dad. He's due in to hospital tomorrow for a removal of the plastic stent and replacement with a Stainless Steel one. Let's hope that goes OK for him.

I'm hoping I can get rid of the cold before the weekend as we are going down to Margate to our Provincial Meeting at the Winter Gardens on Saturday. Three of us are staying over on Friday night and over to Sunday and just looking forward to a great few evenings out and a good meeting of course. It looks as if it should be a nice weekend too thank goodness.

Did I mention what I did to my Smart Phone over the weekend? I managed to knock a glass of water over it! It wasn't that smart - it didn't jump out of the way! Of course this meant no phone for a few days - no problems with that except also meant a mountain of emails when I got home! I've managed to dry it out and get it working again thank goodness.

Remember Kubler Ross?

You may recollect this diagram from some time ago when I was discussing the various stages that people go through especially in terms of someone dying (the grief cycle) and this depiction by Elizabeth Kubler Ross depicts the emotional responses that one goes through. Interestingly we respond to other events in our lives in similar ways and each person responds differently and to greater or lesser extents.

As Change Managers we see this when a major organisational or process change happens in a business. When you get diagnosed with Cancer you tend to follow this sort of pattern. Denial, Anger, Depression are familiar territory too. Being told you are terminal must have a similar impact on you and those around you. Everyone is adapting at different times and in different ways and may be in different phases so it's pretty much a mess all around. It's getting to acceptance that's difficult oh, and by the way, you can slip back and repeat some or all of the cycle again - quite easily if my experience is anything to go by.

Call me sensitive

I was left wondering about the phrase my sister in law used on Sunday night "Don't worry we'll look after you dad for you" and being the cynic that I am - or maybe I was just raw - didn't find it particularly the right thing to say. I'm probably taking it all far too personally but my brain gets thinking and one of the good retorts would have been - "oh so you're going to keep him from dying then?" or some such scathing ugly witticism which, unfortunately my brain is nasty enough to retort with.

I've often worried about that side of my character and in a way could do without the holier than though attitude displayed - if it was actually that and if I didn't read it wrongly. As I mentioned before in my blog, no bugger came and saw me when I was ill and so read into that what you will. I sound a bit hung up on this but it's the guilt of it all. You see, when my parents were local I used to see them every 4 to 6 weeks and they often used to come around here. We used to take the children a lot to see them but they've never ever babysat them whereas my in-laws have on many an occasion. I'm trying to set the scene here for why I shouldn't actually feel guilty. They all moved away around 10 years ago. Since then I've probably seen them twice a year. On some occasions I've seen my parents a bit more often when I travelled a bit more than I do now as I'd plan a stop on the way up or down the country.

My brother lives next door in relation to me - you can walk between their houses in 10 minutes and yet it sounded very much as if they were doing me a favour not being neighbourly to my parents. As I said, perhaps I'm reading it all wrong but it's unlikely me to get characters wildly wrong. I perhaps let people have the benefit of the doubt a little longer than most people would but generally I can smell a bad un. I was amazed that there were 7 of us at the pub and my brother never stuck his hand in his pocket - this from a guy that took a pay cut larger than my yearly salary a few years ago! I could go on about some other stories far worse than just not standing his round (it's a big social stigma in the UK is buying or standing your own round). I then found out that they'd had a bumper day of sales that day - which they didn't mention when we discussed their side business. Pah!

So there you go how to get all bitter and twisted and to balance the going up and seeing your folks who know how busy we are and how difficult it is to get all of us together. It was good that we managed to get all 4 of us together in one place. the girls haven't been to see them for about a year although they did go for a day to pick up 2 large dolls houses - they have one each of my mums houses that wouldn't fit into the new house.

I just need to get my head around it, get the balance right etc. We've offered to do what we can from where we are. I've suggested I can bring up his brother and sister in law to see them - but - he's not that keen. Dad doesn't do visits or anything else - he's always been a very private person and talking to Mrs. F. I realised that my mum and dad don't have any friends at all. They've never had friends around them. Dad's work friends are long missing in action and whilst they know the neighbours it isn't the same at all really. I have no idea what mum is going to do after dad has gone. Maybe she will retreat into herself for a period but I hope that perhaps she won't. We will be able to have her down with us for a while as we now have a spare room. Perhaps she'd like that and perhaps we can introduce her to some new activities or ideas. It worries me that my parents have always done things together, have been inseparable and that they've lived quite quiet, private lives together. Another hurdle to be overcome in good time.

I really don't understand how I'm handling things at the moment, I had a nice experience with my dad this time and he was able to be at his best for a good part of the time. We never did discuss what he wants from me or the elephant in the room but perhaps - after Wednesday - we can start to build up what's needed. I will speak to my mum about it as I've said to her "what do you want from me?" She knows the difficulties as well as I do and she realises that neither of them want me to be there all the time anyway. It's a balance thing and my brother and sister in law are on hand.

Well I'm back to going around in circles and not answering this question or situation properly as it is just too difficult to deal with.

Stunned Silence

That's what I feel like at the moment. The weekend started off well enough we got to Cambridge and picked up L from halls and she was a lot more chatty and animated and so that was good and we drove up via the outskirts of Lincoln and had a break. What I hadn't realised is that we hadn't taken the kids (Kids! 18 and 21) there since they were small - and I mean L was a baby and we happened to be staying nearby so I took them to where my mum was born and the farm house that I used to stay in with my Nan, then her next house where she lived until she died. Past my Aunt and Uncles place, the wharf, the drains (canal drainage) and drove past the old church where my real granddad was buried (I had 3 but only even knew the one).

We got to the Hotel, booked in and had a good evening party with my cousins and my aunt. We will be back up there next April for a wedding which will be nice. I can't believe it but my cousins are 37 and 30 :-)

We drove down to my parents yesterday and stayed overnight (just) when the Hotel sorted us out a couple of rooms :-)

So what can I say, dad looks frail and has lost a lot of weight but his sense of humour and appetite seem to be OK - much better than when I last saw him. He's got the operation this Wednesday and they need to remove the plastic stent and replace it with a stainless steel one. After that we will see what happens. I've known my mum and dad be argumentative - not in a nasty way - they've disagreed about many things may perhaps be the way of it. Mum has flatly banned dad from driving - she thinks his reflexes aren't up to it and I'd have to agree on that - between the two of them though there was a bit more to it than usual. I think it's all to do with the way my dad is charging around as if he can climb Mount Everest and yet he isn't steady on his feet, she is being over protective and he's pushing the boundaries a little too far - as if "danger" is his middle name!

I'm of the opinion that they are in the denial stage at the moment and entering the anger bit. It's difficult to come to terms with and whilst we spoke and we chatted it was definitely the "Elephant in the room" and whilst dad and I spoke about hospital and some areas about cancer - we didn't speak about anything further. I just wished him well on that and we will see what happens after Wednesday. I need to find out about any treatment and I guess they will broach that then.

Met my kid brother and his wife and son. He brought his father in law along - I haven't seen him for years and of course his wife died only a month or so back so I spoke to him about that for a while. So I bought a drink then he did and despite waiting for my brother with a long pregnant pause he wasn't going to buy a round so I ended up doing another. He can be a little bit like that. We had a good old laugh and joke, talked about dad and all that and then his wife told me "Don't worry, we'll look after you dad for you". Now take that as you will but why not cut me and stick me in a barrel of salt? What the hells was that about? But then I've never really got on with her or my brother so it is pretty much par for the course in my estimation. It's difficult enough to get up there and back for us but as I often say - I'm not the one that moved away from here - they all moved away from me and to a place where you need a car to do anything, it's just bizarre.

So apart from that - which I may have misread - I did thank them both for everything they are doing for dad. If they were expecting me to run up and down - then they'd best not hold the breath. With good roads we made it back in 2 1/4 hours - about the best we've ever done from them.

I'm feeling pretty sad about dad at the moment and you can see it is tearing the place apart as the illness starts to get a hold on him and as he gets frailer. I helped him up at one point and his arm is all bony as are his fingers and that of course was a big shock to us as we haven't seen him for some months and he was a couple of stone heavier then. It's nice that he had time for us, this time. It was nice to see him at his best but we did speak about the forgetfulness and other side effects, searching for a word and knowing what it was but not being able to utter it and other stuff I used to find. He's a smart guy and he knows what is happening to him, that's the trouble and that's the tragedy of it. That and that its the anger and denial and no doubt the effort my brother and sister in law are having to put in to control it all. She's doing a grand job but I don't need to be reminded how powerless I am all the time!!!

Well here's the weekend

I'll be heading off in the morning to do the round trip and pick up L from Cambridge on the way - off to my cousin's 30th birthday party for Saturday night then back down to see my dad on Sunday afternoon - and my mum too. Drop L back to the station to get her back to Cambridge and then see my brother in the evening. Go and see my folks again on Monday morning and then get A and Mrs. F. back here for the afternoon as A has to go off and run her Rainbow unit.

Oh well - let's see how it goes - not looking forward to Sunday but perhaps it will be OK.

More when I get back.

Nice evening out

Just myself and a friend and a few beers at the Conservative Club and then we went to a Greek restaurant locally - I've never been there before but it was excellent - a good price and really good food, nice staff and apart from the ambient noise (quarry tiles and large open ceilings).

So nice I'll have to go back as the food was really good and I had some Calves Liver and followed up by kleftiko (literally meaning "in the style of the Klephts", this is lamb slow-baked on the bone, first marinated in garlic and lemon juice, originally cooked in a pit oven. It is said that the Klephts, bandits of the countryside who did not have flocks of their own, would steal lambs or goats and cook the meat in a sealed pit to avoid the smoke being seen). It was beautifully tender and I haven't had one like that for about 15 years or more!

It's local too so hopefully I can get some of the family to go with me next time. Things are moving a pace with the business but I'm now getting ready to go and see my Aunt and cousins and then go and see my dad. I had a long chat with my friend about that tonight and he was very gracious and let me get a load of s**t off my chest - good friends do that. I think I'm ready to go and see the family now :-)

You're just different to me that's all

As I say to some people. You see, there's what it is and what it is, perception and angle you view it from all make us each what we are. Too many people expect conformity from me but, I'm now far worse than I ever was and I don't really conform to normal patterns. I don't think the same and I'm not made up like some people - I find that people seek my opinion and then don't like the answers they get :-) Funny isn't it?

Then there's issues like my dad not wanting to have this huge operation and me defending his corner even though it will probably mean an outcome nobody wants - everyone wants to go to heaven but nobody wants to die.

Given the possibility of being laid up for a month or more because of the operation which may extend his life by a couple of months then the answers are obvious to him and to me. Not everyone gets it though. That's why a lot of people are different to me - they don't face the facts and they don't get the pragmatic decision that needed to be taken.

Back's a little better

What a nightmare that was - I can't believe how many times I've hurt my back recently and so I think I've got to go back to basics here and be very careful about the amount of exercise I do with it. You honestly can't feel it except occasionally when it gets to high speed and your legs feel like they'll cramp and also your sides begin to burn - now to you that would have been a warning sign - to me it was a sign that things were working. I will just have to tone it down to the medium slow pace I originally had it on and not do anything strenuous on it.

After many thunks of Nurofen it appears that my back has stabilised a bit and so I'll be able to go to bed and get some sleep tonight. Hopefully I'll be feeling a little better in the morning.

L appears to have settled down now and it sounds like the locals in her halls are a bunch of social misfits. She's going to hang it out and find people on her course and then it doesn't matter too much - they can form their own clique and to hell with the neighbours. Mind you - who knows with these things - it's their first time away from home and they are all probably at each other's throats.

Sorted

Finally sense has broken out and everything can be done in one go and at one time. A phone call down the right ear and it was sorted out. It doesn't need to be like this people.

On the other front - everything is quiet and we haven't heard from L so hopefully she has settled down a bit and gotten a sense of proportion and met some of her fellow students now.

I've woken with the backache from hell so no more exercise for a few days until I sort this. It must be the vibration plate it doesn't feel like you are doing that much exercise and yet you must. I will need to take it right back to the lower settings = I'd built up to over 50% but obviously need to tone that down a bit.

More Craziness

So Dad needs to go in for tests - of course my kid brother can't keep running around but they want him in x number of times (why they can't coordinate it I don't know but as I reassuringly say to my parents - don't ever expect them to move at your speed or do what you expect them to do). So they say they can send a car for Dad (or transport or whatever) but my mum (who now hasn't driven a car for about 10 years I guess) cannot catch said car, bus or whatever with Dad she will have to make her own way there. Dad, who hates Hospitals won't go anywhere without her.

Does anyone see a problem in this at all? Obviously not the powers that be in the Hospital fraternity. Some limp wristed wet jobsworth who hasn't got a grey cell in between their sodding ears can't work that one out then. Older people who live miles and miles away and have to have tests and aren't allowed to drive after them and are asked to have someone accompany them on the one hand are then refused the best way to comply with that request. I bet a lot of older people who are ill no longer drive and looking at the prices that they scandalously charge at Hospital car parks these days (don't get ill if you can't afford to pay to park your car - and if they delay your appointment you can get a fine for not having the correct length of parking ticket on your car!!!). Don't get me started. Well I've already said I'll pay for taxis but it is just criminal that they cannot sort something out and that they need to have multiple visits when one would do. It causes all sorts of problems to the patients, it can't be a great way to conduct business and it can't be doing much good to anyone really.

If it wasn't a criminal act, which would stick you in jail by the wet liberals in this country, I'd like to go down there and kick some people up the arse until they actually did the job that they are paid for. I mean here is a shocker for you here is an article that came out in 2004 and there are others more recently here and here that give the shocking truth that our NHS which you hear all the shocking stories about it being under manned and wasteful and too many closures and all that is the fourth largest employer in the WORLD. Yes the world - how about that? SO when someone was ranting about losing 10,000 people in the NHS this year they should perhaps look to note that natural wastage of employees in the NHS is around 50,000 per year anyway.

All those people and they can't sort out something simple like getting a sick man and his carer together on the same transport FFS. Get a sodding grip people, no wonder the world's in the state that it is in if you can't arrange a piss up in a brewery - it really is simple stuff to sort out.

Not Again

Well I don't think so - got the "can I come home?" message tonight. Luckily a talk with A and Mrs. F. averted the crisis. What's wrong with people who expect (in less than 24 hours) that it won't be a little difficult to make new friends or to perhaps be lonely. It must be me - I don't get it. I suppose having wanted to get out of the house (in a nice way) and working away from home, wanting my own flat etc means that I've quite often found myself in strange places, knowing absolutely no one. However, I think I'd have given it a full couple of weeks first, I mean Uni hasn't even started yet FFS!

Mrs. F. could obviously see how annoyed I was about it but sense appears to have prevailed. I just find it difficult to work out. It's not as if she hasn't gone off for holidays, a huge trek in South America or other such things - there you go though - you sometimes can't work it out can you - or it must be me. I find the whole thing preposterous and it's like not liking something you've never tried, some sort of fad.

Anyway - it appears that she has taken refuge at the boyfriend's house and will retry tomorrow to get to know her flat mates. Maybe she'll give them a little time to get to know her rather than expecting life long blending in 5 minutes. Right - Cynical and Sarcastic voice off and flame off for now.

Cancer Fighting Strategies

A friend of mine posted this on Twitter the other day. I've reproduced it here and it's worth having a look at but in my ignorance I can only really comment on the Oxygenation piece that mentions to FOCC budwig part of the diet that I follow which so far, touch wood, appears to be doing fine by me - especially in the area of my blood pressure which remains normal - which is pretty good for me :-)

There are a number of things on the list that look as if they make sense but I'm no practitioner and so I'm going to be spending a bit more time reading it slowly and taking it in and seeing if it makes sense to me.

There is certainly a lot of information there and as I said above I can only really comment on the Flax Seed Oil and Cottage Cheese protocol and not the rest.

How annoying

We went out for a curry and had a good evening but then L realised that her eyes were hurting and it looks as if the eye infection she had before she went away had returned. So she dashed off to A&E (ER) and got that sorted. In between times some friends had dropped in as surprise but of course she wasn't there!

I went to bed quite late and was woken by serious a really stomach ache and back ache and I couldn't get comfortable but it wasn't or didn't feel serious it was just hurting a hell of a lot. I'm almost certain it was trapped wind whcih I won't even tell you how I came to that conclusion but it meant I couldn't travel with L, A & Mrs. F. to Cambridge. I eventually got up some hours later and slowly began to feel better and now I'm off to bed early to catch up on the sleep I didn't get. I'll be seeing L next week to hear how she's got on this week and no doubt we will talk down the week.

I spoke to dad he's getting over his horrible turn from the hospital last week or whenever it was. He's bright enough but has a series of appointments and procedures this week! I've suggested mum talk to them and understand why the letters they've received are different to what they've been told. I've set the scene in a way too that I won't be around for the next couple of weeks after we go this weekend.

Well - let's see what this coming week brings. I know I'm going to miss young L being around the house but as I said to her this morning - she's going to have the time of her life in between studying so go for it and enjoy every minute of it. Her friends who have now finished have all said that they really wanted to be back at Uni as they miss it so much.

Live for Today

I believe it was Dale Carnegie who coined that some years ago - it was to do with - and I'm paraphrasing this so bear with me whilst I put my spin on it:

You live for today and mustn't regret the past - that has happened and you cannot do anything about it - it's in the past and that's gone. Neither must you live for tomorrow as well it may not arrive, it means you're not living for today which is the only thing you can live for. Tomorrow hasn't happened, the past can't be changed. In a way it is a difficult way to live as if you are like me you may regret things in the past and sometimes I look back and we were having a conversation tonight and my daughters and my nephew were amazed that you were allowed to smoke on trains, on the underground, in planes, in shops and all over the place. I regret that I ever did smoke but that was the life I was brought up in, everyone smoked and all your mates smoked etc etc.

The point? Well the point is that I was trying to explain that there's things that you need to let go - it's difficult and it isn't in our nature but I am trying like mad to let go of the past as it doesn't help me and it holds you back and that's not good. It warps your mind can poison it too. This is what I find, that things I regret can become a burden and yet there's nothing I can do to change it and that word spoken in anger, or some sort of action I now think wasn't right cannot be undone, forget it and move on. I am finding myself regretting the past but also building up a sort of hit list of people who'd done me wrong and I was planning revenge that realistically I couldn't take, blaming these people for something that it isn't really possible that they'd actually done.

The brain is a strange thing and so I found myself with this stupid set of thoughts and decided that it was time to do something about them. Then Dad got ill and L is off to University proper - staying away and I can see that there's a little reticence about it from L and Mrs. F. and yet I see the positives in this and would have jumped at the chance. It isn't as if we are that far away. But what I was getting to was to be positive, go for the day as tomorrow hasn't happened yet.

So Dad's situation is all about the day and the future isn't looking nice but like us all we can't do anything about that. We can just do our best everyday and not waste it.

The Last Supper? Well Last Curry Actually

We are off out for a family curry to say goodbye and wish good luck to L who is off to Cambridge tomorrow to start University and Freshers week. I really hope that she looks back at this as being the best 3 years of her life - well maybe the rest will be too but you know what I mean.

To me, these years cement your future and you "grow". Mind you I never kept any of my college friends as I didn't particularly bond with them - they were all right but I'd never ever consider them as life long friends - they were just people I worked with and happened to go to college with. In fact I only have one friend left from that time. Both of our lives have been intertwined and it is a shame that the other one from that sort of era died earlier this year. My friends are either old school chums or friends from recent work or from my Masonic circle. Lot's of my friends though met people at University and they still know them and in some cases their marriages were from people they met.

I hope that L gets to meet good friends and has good times as well as enjoys the course she is on. It should be an interesting course for her as she is very good at maths and her course includes business, finance and accountancy so pretty comprehensive and I hope a good foundation to go on and do what she wants in life.

I enjoy it when we all go out - we don't do it half enough in my estimation.

Context

Putting it all into context. That's where I am at in my life at the moment. The business is coming together and making a lot of sense now that the planning is almost but not quite finished. It's been a long road and in reality, we haven't actually started unless we get funding and it all could have been done for nothing :-) That's the reality of the situation and hard as that may seem, it's the bottom line about the business. I'm also involved in another business start-up that is in very early days too and one that may pay some dividends in a few years time. So that's business.

Family will suffer a big upheaval this weekend as L goes to University. Unlike A, she will actually stay away and be in Halls. She's justifiably very excited and a little nervous too but she has a great personality that will carry her through and her boyfriend isn't too far away and in fact neither are we if it comes to it. I used to drive there and back every day for about 6 months when I worked in Cambridge so it can be done :-)

Then there's Dad and his situation to deal with. That is getting a little interesting as his birthday coincides with my Father-In-Laws who is 90 this year and My Nephew who is 30. My cousin is also 30 and we are off to her party in a few weeks - the weekend I go and see my dad. So my sister in law is planning a joint 30th and 90th party which would take place at the weekend when it is my dad's 81st birthday. Do you see the problem? Of course, I'm not sure my Dad would actually want to be doing much to celebrate. We did something for his 80th last year - and of course now I know why he wasn't particularly great at that either. Doctors reckon that dad could have been suffering some sorts of problems for 18 months or more. That fits in exactly with my recollections of the 2 or 3 times I've seen him in that time.

So a number of things will be coming to a head shortly and work and family are the main ones. In a way, I'm hoping that I'll be able to keep some sort of control over some of it but, of course, quite what happens when I see my dad in a week or so will determine what actions I'll be taking on top of the work I'm doing now.

To add a little pressure to everything else I'm trying to sort out finances for the Lodge and need to get those sorted pretty quickly and in between times - it's all a bit much. At least later this month I get a weekend away with my buddies down to Margate - which I hope will be a laugh like it was 2 years ago (doesn't time fly!).

Some Good News

And that's that Steve Kelley over in the US has got another clear from his scope and that they are using new improved cystoscope that means he can go straight on to BCG treatment tomorrow.

That's great news indeed but there's a bit of a mixed bag about the ongoing treatment. Read Here for more information.

I'm quite grateful that my Hospital is 5 minutes (at the most) drive from here and I used to have all my treatments at 2 pm but for Steve who has to go a long way for his treatments it's a different matter.

Anyway, the absolutely brilliant news is that he is clear and can once again go on for the next stage of treatment.

Jazz Night

Was a really good evening and I really enjoyed that first beer - it went down a treat :-)

Didn't talk about Dad to my friends as they are much older than dad and one of our number isn't going to turn up again as his Parkinson's Disease has led to complete lack of control (if you get my drift). Bless him, he's been fighting this for about three years I think and suddenly it's out of control and it is just so sad. So I didn't even bring up my Dad's news and then the other very young chap who had Appendix Cancer now has a UTI so he isn't feeling great. The music was very good though so the list of ailments and problems was kept to a minimum :-)

Whilst I'm writing, let's spare a BIG thought / Prayer / Finger Crossed / or whatever else you do to wish Steve Kelley well on the 8th September as he has his Flexible Cystoscopy. Let's hope that it is all clear and that he can progress on to his next set of treatments (I believe it is a maintenance set of BCGs). Steve's had the whole of summer off and has been looking after himself with a new diet, FOCC, exercise (which still sucks) and various supplements, all of which add to a regime of eating and exercising in an effort to combat cancer and it's causes.

Things move on apace here as L gets ready to go to Cambridge this weekend. I'm so pleased for her. Of course we are going to miss her a lot but what an opportunity and one that I never experienced - I just hope she grasps it and realises that these 3 years will probably be the best of her life and also that they will bring her life long friendships and experiences that she can cherish forever. I really wish that I had those opportunities when I was her age but if I had, I wouldn't be here now - I probably wouldn't have smoked or worked in the industry I did, met Mrs. F. or had A & L :-) so there you go! :-)

Back in my groove

I'm helping other people come to terms with my Dad's problem :-) Doh! Just like I did with mine, I've been doing the logic and medical bit and saying how it's going to be. It's a bit bizarre as the outcome is pretty much written although I hope to speak to him and see what state of mind he is in about it. I think it will be very different to mine and I've to respect that of course.

Many would think it somewhat selfish but I doubt that they'd have the background and experience to make that sort of call. I like to think perhaps I do have that sort of background and experience and can offer the advice I have without it being impertinent or not called for.

I said it earlier on in this blog that you tend to get the Snake Oil pedlars and Witch Doctors rattling on about something that can only be drunk on the fifth Saturday under a Blue Moon when the Rabbits are mating in the trees or some such tripe and utter bollocks. They really can go to hell and the fast way :-) I won't be pushing anything of the sort - all I can do is explain what I do and see if that's something he'd like to look at. At the moment, even I don't know if it's the right thing for me but so far it's worked so perhaps for him it may help some way. We'll see.

I do feel slightly borderline on things I have to say - I'm certainly a bit confused about what to do. It's a silly question to have but we communicate on very similar plains my dad and I and we don't really tend to say much to each other. We have a laugh and a joke, we are pretty similar people in many ways and I'm not convinced that he's going to want me to be attending his side a lot. Certainly see him more often but I can't imagine him actually wanting me to be there that often. I'll speak to him when I see him and see what he wants to do - after all it's his decision and I'll follow his wishes.

A Plan

I've been speaking to Mrs. F. and I reckon I could make a plan to go up and back most weekends to see my dad. I guess it all depends on how serious things are, quite how accurate the medical team are and quite what his expectations are. I'm trying not to sound mechanical or uncaring or that in some way my presence will not be too much or too little and not an imposition. Of course, what IS the right thing to do also comes into it.

This month I'm only available to see him on the day I have free to see him. October may be a bit different I suppose especially as it is his 81st Birthday. It's mostly up to him and I'm wanting to be there and at the same time not wanting to either.

It's all pretty confusing at the moment. For example, I see my parents once or twice a year and have done for the past 5 or so years. I saw a lot more of them before I was ill as I was driving a lot and so made detours to go see them on the way to and from Yorkshire where I worked for a while and on other trips too. When they had the old house we stayed a little longer and generally we try and stay for two or three days at a time. We coincided a Narrow Boat holiday to cruise right past their door and stayed with them then too. So I do try but the main contact is by phone, religiously twice a week now it used to be once a week and when needed.

So I'm in a dilemma about being good company or not and I'm being a bit selfish too and I don't know if I'm going to be comfortable with myself for not seeing him more. Let's face it, if he'd have had something that brought about his demise in the past few years I wouldn't have been there and that's the problem with it all. I have lived in this house for 23 years and I've lived for the most part here since I was 10 years old when my parents moved out of London. It was my parents and my brother that made the move to Norfolk/Cambridgeshire and I have to accept that I'm a bit stuck about that and what it means is that I wont see my father many times more now and my brother will see a lot of him. Maybe I feel I'm not doing my bit? Maybe I am? It's a quandary all right and one I'm not sure I have the answers to at the moment.

My friends all tell me it was important for them to be there at the end to have had the time with their dads especially one whose dad died very suddenly.

So my side is this. I've lived through my illness and I may still be living through it as far as I know. I very much doubt I'll have a normal life any more. The sword of Damocles hangs over my head every time I go to the toilet and urinate and every time I go to be checked. My cancer can come back and without doubt it was my burden to carry and whilst I am aware that everyone around me may have suffered - I very much doubt that it matched the physical symptoms but I know that mentally it did affect many. Mrs. F. and the girls are pretty pragmatic people. As a family unit we are pretty much matter of fact, logical, things will be what they will be and I dislike myself immensely as I too have a very matter of fact outlook on what is happening now. Sure I do get troubled and I do worry and I am sad but I'm also a realist and things have to be what they will be. Life has a beginning and it has an end.

I know what I dread and that is seeing what I saw in myself and after having lived through my experience I will see in my father what I saw in myself but what didn't happen in my instance (but could well have). Some take my attitude as being hard and uncaring and yet in reality that isn't the case, it is being realistic. Should I go see my Dad many times a week when frankly the last time I saw him that often was when we worked in the same building 20 years ago. Generally I'd see my parents 10 times a year when they were local and now I see them twice a year if we are lucky. I don't know - I'm sure my mum, dad and brother will make their opinion known when I see them in a few weeks.

It's also fair to say that I'm not very close to my dad either - we get on fine don't get me wrong. We laugh and joke we aren't in any way estranged or anything like that but he is and always has been an introverted and very private person and whilst he will always be my dad, we never did things together after I left home. We've never been out drinking, cricket or football or any event I can think of and I've no complaints about that either - it's not my thing either. We did all the father and son stuff when I was a kid so that was great. He's been great with the Kids - he's known as "Funny Granddad" for good reason, he's there if you need him and he's never given advice (unlike my mum LOL) except when asked for and never ventured to many opinions - occasionally when I was a bit younger he gave me some sage words of advice (I was a little headstrong before I settled down a bit).

And that's it. He's never asked me for anything and we all get along OK. I have a number of slight moans about him not doing things like attending family parties and get togethers leaving us as the lone representatives because my brother doesn't "travel well" either by the looks of things. My exile during my illness and the fact that the spare rooms no longer exist and I stay in a Hotel (well Pub) nearby these days to make the journey more bearable and to have a bit of extra time there.

I feel like I'm being really selfish about this and I know I'll be unhappy with myself if "I'm not there when..." or should something happen but at the end of the day, if it had been local and they hadn't moved then I could indeed share the car journeys, hospital visits and some of my experience I suppose. It's a guilt trip and one that I probably cannot win because no matter what I do decide to do it won't be enough either in my eyes, my parents or my brothers.

Wedding Update

It was an interesting wedding venue and the bride and groom stayed in a tree house for their first night which was near the huge marquee and tea-lit woods.  Very unusual.

My dad was mentioned but only in passing and so I didn't have to listen to people not being able to express themselves.  I have a very simple view of these things and that's brought about through my own experience - of course.  Spoke to mum today and things seem OK, dad's recovering from this awful bug he picked up at the hospital but other than that he is fine and beginning to eat again properly.  He was being cheeky so definitely on the mend!

I heard one bit of advice about "being there" as often as possible but I'm not sure that is possible for me as such - it's difficult and we are having to make arrangements to be there.  I know I should try and I'm stuck here wondering what I should and should not be doing.  Perhaps dad will give me his own message when I'm there in a few weeks time. In a way that's the difficult part for me, I work all week, I haven't paid myself in over a year and I need to get things happening for my own family and myself so using up my spare time - of which I have very little is going to be difficult.  I'll just have to work out what I can and cannot do in the time available to me.  Sound callous but somewhere along the line I need to be realistic.  I'd dearly love to be 30 or 40 minutes drive from them so I could see them at weekends and once or twice a week but I'd need to invest 5 or 6 hours to do a trip and that really slows down and limits my available options.

That's arranged

Booked hotels etc so I can go visit my dad in a few weeks time. Girls will either get there themselves or come with us. So far so well planned.

Interesting day today as we go and celebrate the first of our friend's children to get married. Wow, I feel old now. It's been around 30 years since all of us got married and here's one of the youngest ones getting married. Amazing.

I'll be chatting to some friends this evening about dad as they now know and we will just see how it goes. I hope it isn't too bad as we should celebrate the wedding not be sad about my dad.

Rude awakening

At the crack of sparrows this morning. Kid brother had been up most of the night as Dad picked up some horrible bug at the Hospital and was in a bad way getting the Doctor out to come and see him. Highly unusual. Dad's hardly ever ill and as mum said - "he's making up for it now!"

My kid brother said "did I wake you up" and I said he did and then he looked at his watch! Doh...

I was pretty tired after being up in London and so wasn't at all with it. Anyway, things have settled down, the person who got the most amount of rest after the Doctor sorted him out was Dad :-)

It's one of those things I suppose, we might have to get used to Dad being ill more often.

Facebook

I see my brother posted to Facebook and it was a heart rending sort of statement. It says "Not once did I ever feel that I don't need you in my life. No words are enough to describe how much you mean to me, Dad. Just want to say, I love you."

Well - yes that's true but at the end of the day I kind of think he knows that. It invokes sentimental messages from people that know us but it doesn't for one minute address the issue and that is - "Dad, what do YOU want to do?"

Only in that conversation - which I intend to have in a few weeks can we hope to sort this out. It isn't my illness or my brothers, my mums or anyone of my realtives - it's his and he must decide.

Slept well enough

Mrs. F. suggested I listen to a Radio 4 broadcast about terminal cancer this morning but, in all honesty, its a special day and I don't want to make my mood any worse than it is because it is the 100th meeting of London Lunchtimers and I'm the Chairman so I need to be on good form.

I'm meeting up with a friend afterwards for a couple of beers and a chat so that will be nice. As long as we aren't too late of course. I could do with a little company and he's a nice guy.

It's a strange day - I'm sort of OK today - I slept quite well - it must have been the couple of rather large scotches and I'm not feeling too tired either - I just hope that I do well at lunchtime and that a few late afternoon beers and a chat will make me feel a bit better.

How things look after a few drinks

Mrs. F. looked at me and knew pretty much what I was thinking and A, my daughter, was pretty upset when Mrs. F told her. Not surprising, he's much as I remember my grandfather was to me, a lovely man. Talking of which I went back to my Grandparent's house in my subconscious/dreams last night. I remembered every bit of the flat, where everything was even the smell of the place and my grandparents speaking to me. Being an awkward teenager and having nothing useful in terms of conversation, taking my girlfriend there for their 50th Wedding Anniversary but I recall, this perpetual calendar my granddad had and as you turned over it's art deco style chrome canister it changed the day (unless you did it too fast). It was the most fascinating thing.

I sit here at way gone 1 in the morning knowing that the booze is probably talking a bit by now feeling a little tearful and yet thankful for having been my parent's child. I can see it no other way, not having been brought up fairer by anyone else (although in my youth I may had happened to mention what my friend's parents let them do!) and in all honesty I just want Dad to have "no regrets" - by that I mean that we always had what we needed and more, we weren't poor but neither were we rich, we got by and I've no axe to grind about it. Whether I'm brave enough to say that I don't know, time will tell on that one and I'm certain that Dad's never wanted for anything else from us. I'm sort of gutted for my mum, my parents are close and have lived as a couple for over 50 years. Modern day marriages (mine especially) aren't like that - I've worked away for a lot of the time and I've worked long hours and sometimes I wonder for what?

Any way - it's getting very late now and I've had my glasses of scotch and reflection. Tomorrow I'm off to London for our 100th Meeting of London Lunchtimers and maybe, just maybe, I'll have a few beers after that. I may need a victim to go drinking with or might just come straight home and have one or two at my local and then wander home.

All in all - it's been one of those days. I have full empathy with my dad as I recollect how wretched I felt when my doctor told me he thought it was a tumour) that's before I even had it checked out. I fell apart completely when I got home and so I can only begin to imagine what it is like at home at the moment. It's a big thing to come to terms with. I remember going for the job at the charity and the President asked me "Did you think you were going to die?" and I said "Yes, I did". You may think it was a cruel question but he knew that the job I was going to do and the work needed as their first PR person needed me to understand what that actually felt like. I felt it once and I never wanted to feel it again and then today happened.

I don't feel drunk or even squify - no idea why not. I just feel distant.