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.