Back from 4 days at my parents. Been a struggle to keep things together but finally appealed to my brother's head and he agreed that dad needs to go into a nursing home. I think he really wanted him home but the daily routine I've seen would stretch Job's patience and yo couldn't ask my mum to do these things 24 hours a day. Certainly the staff told me that there wasn't going to be an infinite number of resources thrown at a situation where my dad would go home. The sheer logistics would be too demanding and the need for registered nursing care etc would become too much.
Having then spent over 2 hours in a meeting about funding and hopefully hearing that it is going forward for consideration and that it should be granted was good and with agreement from my brother and re-assuring myself that my mum didn't feel that she was pressurised one way or the other by my views, my brothers or those of the specialist we arrived at the point of telling dad. I was all prepared to tell him but mum, bless her went straight to it without waiting for the Social Worker or the Nurse. I like the social worker, he has been very fair and very straight with us and I had a chat with him and he agreed to turn up today. He also spoke to dad and explained the NHS point of view about his treatment and why the next interim step would be the nursing home rather than straight home.
I managed to spend time with dad alone and told him about the meeting we had had and why medically it was difficult for him to come home. I was very matter of fact and took each of the conditions he has now and explained why it wasn't possible to do these at the house. I also drew his attention to the noisy environment that he was in now and the relative peace of where he would go also that mum would have more access (I made him laugh saying I wasn't sure if that was a benefit or not).
Mum was pretty distraught as we left but deep down inside she knew she had done the right thing, the last thing dad needs is her to be ill and she would make herself so trying to look after him at home. The problem would be that we might miss something. We actually didn't earlier on and realised something was wrong with him which ended up with him on Oxygen for 2 days! That's the sort of issue that means he still needs ongoing medical attention, hence the trauma of telling him that he isn't coming home, just yet. Perhaps, he sin't coming home at all and he said that to me. He wondered if he was ever going to get some strength back and not be falling asleep all the time, he thought he would carry on sleeping until he died! Well, I just had to say that I didn't know what the future held but I was certain that it didn't help being where he was now and that we needed to at least make one more positive step towards him coming home which was to get his condition under some level of control.
Of course, it is all pretty upsetting all around. In dad's ward was a guy who was dying and his dad was sat by his side. Bless him the guy looked all in and they were just making him comfortable. For dad they are trying to balance his diabetes which is the problem right now. That is now nearing control but additionally the muscle wastage on his legs is such that he is now bed bound and double incontinent (although if you are quick enough.... he isn't). The trouble is that I watched as his nurse call bell went off for 10 - yes 10 minutes - it then took a further 30 minutes for bed pan to be brought and the whole process to have happened - that's 40 minutes. It took 25 minutes for him to get 4 tablets down his throat as he gets easily distracted (and doesn't like tablets anyway). It's all very hard work and then all of a sudden he is back with you cracking funny jokes. Nurse says "Can I take you blood pressure?" "Sure" he say "as long as you bring it back straight afterwards" He does look sad and vulnerable and of course mum is in bits most of the time. It's been nice to get up there, diffuse the potential family feud that may have brewed with my brother wanting dad home and my mum getting pressure from him. I was saying to the professionals and my mum that frankly what he and I wanted was totally irrelevant anyway it was what is right for my dad and for my mum that's important.
So a long week and lots of things to think about and consider. I was surprised how emotional I got when I saw the young man who is dying with his father. He's a lovely man and no one should really she their child predecease them but he was such a nice man and the nurses too were lovely to him. I went and got a chair for one of the visitors to his bed and spoke to him and felt so upset for his pending loss, just because here he was in that situation. I felt about that for my dad for the first time this week. I hate seeing my mum upset and I've never seen my dad like that - I've seen him distressed but not quite like this and finally I've started to feel the pain of losing him. I think that my brother and my mum will feel it quite powerfully - they have been much closer to him than I have. If I think about it, my dad really hasn't had too much to do with me since I was 19 or 20 and so I've not really had him on hand for 35 or so years. I talk to my mum a fair bit and I suppose my brother and I haven't really been close for well over 20 years now since he reconstructed his life with his new wife. I doubt that will ever be repaired we used to be - well - like brothers ! :-) Now we talk to each other and more so recently. However, on both occasions now that I have been to see my mum and dad - in both cases for 4 days, he hasn't popped around even though he is 5 minutes from the house. Says it all really!
That will do for now.... Tired, need bed and sleep!
Friday, June 22, 2012
Monday, June 18, 2012
Off to the Exhibition
It is the week of A's art exhibition and I'm going with her tonight to see it as I can't go tomorrow when everyone else is going. I'm under instructions to take some photos for my mum. I suppose I'll be allowed to do that?
It sounds like A will get her results tomorrow so we will know what degree she will come away with and then we are going to line ourselves up for her Graduation day in about a month or so. I hope that will be a lovely day for her. I'm looking forward to it.
Tomorrow I'm leaving very early in the morning to get to my mums in time for breakfast. I'm hoping that I can cheer her up a bit whilst I'm there - and bring a little change of emphasis. Also staying there (at my parents) will be good and it will give her some company in the mornings.
It sounds like A will get her results tomorrow so we will know what degree she will come away with and then we are going to line ourselves up for her Graduation day in about a month or so. I hope that will be a lovely day for her. I'm looking forward to it.
Tomorrow I'm leaving very early in the morning to get to my mums in time for breakfast. I'm hoping that I can cheer her up a bit whilst I'm there - and bring a little change of emphasis. Also staying there (at my parents) will be good and it will give her some company in the mornings.
What to do?
It is a bit strange that I am still no nearer to considering what to do in the future. I have done some work for one guy and other people can now see the "value" in using me and I'm still not absolutely sure that this is what I actually want or need to do. It's one of those things that concern me as I really want to get on and do something and yet I don't actually know what it is I want to do.
It doesn't help with instability in the family with my dad and also here at home. One is serious and the other is trivial but needs sorting just the same. In a way what ever will be will be with dad and I will have to deal with that as and when it happens. There will be the inevitable Kubler Ross stuff to deal with and there will be the need for a period of normalising for my mother. We plan to have her down here with us and I think it might be nice to take her away on a holiday or have some time away at some point so that she can just take a little time away from the house. I doubt it will be easy to have an empty house and all that entails. I'm sure that we (my brother and I) wont let that happen.
Then there is some normalising to be done here. It's coming up to my 6th Anniversary - it will be here very soon indeed. I actually had some signs about two weeks earlier so in reality the very first show was about now six years ago. I find myself, rather happily in a much better place than I could have hoped for back then but, of course a lot has happened to me since that time. Some of that good and some of it pretty bad. I have "an attitude" today that I didn't have back then and I have a much greater understanding of my abilities but perhaps I have never gotten my head around the one thing that really took a pounding and that's my relationship with my friends, my colleagues and my family. I consider myself pretty lucky to have my family around me - today was nice and quite rare to see the girls and Mrs. F. all together - even in the same room (iPads permitting)!
What I think though is that I've strained things and now is the time to review and heal that or perhaps find out what the conclusion of those strains may be. Anyway, that is something that needs to happen as soon as it can. I'm feeling that much better these days that I can perhaps break away from my protective shell a bit and go do some living. I just hoped that it wasn't just me wanting to do that - I fear it may be only me that sees things that way. I mentioned 5 years ago that I thought there would be collateral damage and I fear that there may well be. Somehow I feel my future may be served in a completely different way - but what do I know :-)
It doesn't help with instability in the family with my dad and also here at home. One is serious and the other is trivial but needs sorting just the same. In a way what ever will be will be with dad and I will have to deal with that as and when it happens. There will be the inevitable Kubler Ross stuff to deal with and there will be the need for a period of normalising for my mother. We plan to have her down here with us and I think it might be nice to take her away on a holiday or have some time away at some point so that she can just take a little time away from the house. I doubt it will be easy to have an empty house and all that entails. I'm sure that we (my brother and I) wont let that happen.
Then there is some normalising to be done here. It's coming up to my 6th Anniversary - it will be here very soon indeed. I actually had some signs about two weeks earlier so in reality the very first show was about now six years ago. I find myself, rather happily in a much better place than I could have hoped for back then but, of course a lot has happened to me since that time. Some of that good and some of it pretty bad. I have "an attitude" today that I didn't have back then and I have a much greater understanding of my abilities but perhaps I have never gotten my head around the one thing that really took a pounding and that's my relationship with my friends, my colleagues and my family. I consider myself pretty lucky to have my family around me - today was nice and quite rare to see the girls and Mrs. F. all together - even in the same room (iPads permitting)!
What I think though is that I've strained things and now is the time to review and heal that or perhaps find out what the conclusion of those strains may be. Anyway, that is something that needs to happen as soon as it can. I'm feeling that much better these days that I can perhaps break away from my protective shell a bit and go do some living. I just hoped that it wasn't just me wanting to do that - I fear it may be only me that sees things that way. I mentioned 5 years ago that I thought there would be collateral damage and I fear that there may well be. Somehow I feel my future may be served in a completely different way - but what do I know :-)
Sunday, June 17, 2012
Father's Day
Both girls managed to get me exactly the same card even though they were miles apart! We are going out for a Curry at lunchtime which will be nice - our local curry house is very good and do a buffet meal on Sunday. Miraculously the sun has come out (was meant to be a horrible weekend) so that's nice. Of course, how long it will last is debatable.
So after the curry I can confirm it was all rather pleasant and up to their usual standard. I stopped short of going for seconds even though it is a buffet as I realise that I'd probably just be getting back to old habits and eating because it was there not because I needed it.
It was a completely democratic affair, the girls paid for the meal, Mrs. F. paid for the drinks and I left the tip....
So after the curry I can confirm it was all rather pleasant and up to their usual standard. I stopped short of going for seconds even though it is a buffet as I realise that I'd probably just be getting back to old habits and eating because it was there not because I needed it.
It was a completely democratic affair, the girls paid for the meal, Mrs. F. paid for the drinks and I left the tip....
Saturday, June 16, 2012
A Wet Weekend
The third wash out in a row. Crazy but there you go - it just means that the chances to get out are severely reduced and that I'll be stuck in the house. I do need to get to the local Chemist and get my prescriptions for my blood pressure. Interestingly enough my blood pressure remains normal or below these days. A couple of stone off my weight and healthier food appear to be doing wonders. I need to schedule in exercise I think too again now. I haven't had (touches wood) any back problems for about 2 months and so once again think that getting the weight off has helped this.
When I start exercising though, I will take it easy this time. I may try the short burst exercises rather than the long 30 and 40 minutes sessions that I used to do. I have all the stuff I need to do this. I just need to change discipline to do it.
I'm the sort of person that needs a catalyst or scene change to go and do the next thing. I'm drifting along at the moment not certain quite what to do for the best. Ideally, I would go and help some people getting their businesses setup and get some sort of reward for doing that but something isn't clicking at the moment. I kind of need a change in routine to happen and I also have got to working the highs and lows of my current situation from all angles. I think too deep someone told me once (probably more than once). I do a lot of analysis before I do things and it is why I work well when doing strategy and planning work - that's the way my mind is constructed. I'm planning our bathroom at the moment and what work will be needed. I know what sequence the work will take, how long, what materials I will need and so on right down to the number of screws and plumbing fittings required. Some call that "anal" but in truth, I know exactly what I need to do to build the bathroom. The critical task is the plasterer who has to come in when everything is clear for him. After that has dried out I know day to day what I'm doing.....
I realise life isn't quite like that but you need to have a plan. I have a plan - I just haven't filled it in yet :-) The mindmap (spider diagram) that I've drawn up is now some 15 sheets long and growing. Perhaps I'll spend some more time this weekend just sorting that out.
When I start exercising though, I will take it easy this time. I may try the short burst exercises rather than the long 30 and 40 minutes sessions that I used to do. I have all the stuff I need to do this. I just need to change discipline to do it.
I'm the sort of person that needs a catalyst or scene change to go and do the next thing. I'm drifting along at the moment not certain quite what to do for the best. Ideally, I would go and help some people getting their businesses setup and get some sort of reward for doing that but something isn't clicking at the moment. I kind of need a change in routine to happen and I also have got to working the highs and lows of my current situation from all angles. I think too deep someone told me once (probably more than once). I do a lot of analysis before I do things and it is why I work well when doing strategy and planning work - that's the way my mind is constructed. I'm planning our bathroom at the moment and what work will be needed. I know what sequence the work will take, how long, what materials I will need and so on right down to the number of screws and plumbing fittings required. Some call that "anal" but in truth, I know exactly what I need to do to build the bathroom. The critical task is the plasterer who has to come in when everything is clear for him. After that has dried out I know day to day what I'm doing.....
I realise life isn't quite like that but you need to have a plan. I have a plan - I just haven't filled it in yet :-) The mindmap (spider diagram) that I've drawn up is now some 15 sheets long and growing. Perhaps I'll spend some more time this weekend just sorting that out.
Friday, June 15, 2012
What Weekend
Mrs. F. off early tomorrow to collect L from Cambridge and bring her back - gosh her first year at Uni has gone quickly. A is off to University to tend her exhibit. She has to go in early on Monday too. So I'll be "home alone" once again. I don't mind too much and it will be nice later on when L arrives - that will liven the place up :-) She's as crazy as a Box of Frogs or a Barrel load of Monkeys :-) but she makes me laugh as she is so funny.
So a quiet day tomorrow and I might just spend a bit of time practising the piano - I ought to do that!
So a quiet day tomorrow and I might just spend a bit of time practising the piano - I ought to do that!
Homecoming
Spoke to my mum and she was in two minds about dad coming home but, surprised as I am, I can see the logic in at least trying to achieve that. The sheer logistics of it are surprising as there will need to be daily visits by the district nurse, various carers and others, a bed is to be provided and all the other equipment needed to look after him. There's training in how to roll and move dad without hurting him or mum in the process.
It will be nice if it can happen as dad can see the fields out the back and part of the garden and see out the front too. That's an improvement on seeing the tops of trees and the sky (if you are lucky) in the Hospital. It will be peaceful and tranquil and it will after all be home - and home is a secure place to be. My brother and sister-in-law are 5 minutes away and that too makes it better - at the moment the 30 minutes there and back journey and the waiting around all make for a rough time for my mum.
Well it will be nice if we can get him home I suppose and if that doesn't work then it will be a nursing home and as a further fall back there is the Hospice too.
At last things are moving, seeing dad in that dreadful place was just terrible, he looked so lost and weak and very un dad like... Father's Day on Sunday so he will have my card which I sent off early..
It will be nice if it can happen as dad can see the fields out the back and part of the garden and see out the front too. That's an improvement on seeing the tops of trees and the sky (if you are lucky) in the Hospital. It will be peaceful and tranquil and it will after all be home - and home is a secure place to be. My brother and sister-in-law are 5 minutes away and that too makes it better - at the moment the 30 minutes there and back journey and the waiting around all make for a rough time for my mum.
Well it will be nice if we can get him home I suppose and if that doesn't work then it will be a nursing home and as a further fall back there is the Hospice too.
At last things are moving, seeing dad in that dreadful place was just terrible, he looked so lost and weak and very un dad like... Father's Day on Sunday so he will have my card which I sent off early..
Friends and wetting yourself with laughter
If I were to tell you that some of my friends - whether by design or not - have contributed to my well being by relentlessly taking the piss out of me you may not believe it but actually, that's what happens a lot! By this I mean that I am very happy for people to take the rise (piss) out of me as long as we all laugh about it and it IS funny. It mustn't be nasty but it can be black humour and it can be quite withering.
We met up briefly on Tuesday as I came back from one of my meetings but tonight we met up at my local and there was a quiz on - which is always a ball of laughs. We are - as I describe my daughter - as sensible as a box of frogs!! We got some real belly laughs out of the audience by answering the questions wrongly. The best one "Who is buried under Kings Cross Station" - answer is Boadicea - we yelled out was "The Northern Line" which is the underground tube line.... Well it got a muted laugh.
Quiz nights are all about having a good laugh and enjoying the company of the people there. We did that - it took some pressure off me tonight as I've heard some more about my dad and it is "good" news in that - contrary to my belief they want him to come home - which is the best place in reality but I was never sure that they could - as Jean Luc Picard says "make it so". They can indeed provide the equipment and the personnel to do this. In many ways this is what we have been trying for months to find out. I think that dad would be "happy to die at home" and that mum would be "happy to nurse him" there too. Given the proper levels of support that may be a much better thing than him being in a home or a hospice.
I'm surprised that this is an option but I will be very happy if it does come about and that dad can be at home until "the end", it will be much better than where he is now - we all hate it, it is not where dad should be. It is becoming upsetting to me now. Dad looks like someone who lived through Belsen and you just know what the outcome is going to be. for the moment my own life is on hold as I come to terms with his situation and also my own. The issue being here that all my friends from school, who I was out with tonight, had their fathers die on them over the past 6 years. One was sudden, one was quick and one was expected and they are very good to me as they understand the problems I have (as a cancer survivor) to see my father going through the final stages in his life in front of my eyes. At one time I foresaw this happening to me. It is distressing and only in the last few days have I actually felt emotional about it.
Last night I read the Marie Curie Nurses web site and the end of life piece and although I know what is going to happen I did have a very solemn moment - reflecting on what it meant to us all. I see that the person dying in some ways fades away but it is the knowledge that I may not be there at the end that somehow nags at me. I may explain this later on - it is to do with the "abuse" my mother took at her mother's funeral and how my brother and I turned out to be a little bit like the Kray Twins that day and a bunch of remote family were given a stark choice. No one ever makes my mother cry with ugly words. Hell I could have broken bones that day and I'm the quiet one. However whenever I get near these people, even today, they get the hell out of my way :-) You can upset me but not my family - ever. Not sure I'm quite Joe Pesci in Goodfellas but you can imagine my brother and I in that situation. Funny I should think of that at this time!
I feel that I need to go up next week to spend some time with my mum. I feel a bit of a fraud as I never felt dad would be allowed home but if that's what is going to happen then I'm pleased. I'm happy that he may be allowed to spend his last days with my mum and in his own house. I was beginning to hate the way he was being de-humanised by "the system" where he was. I hope that he gets home and finds some peace there.
We met up briefly on Tuesday as I came back from one of my meetings but tonight we met up at my local and there was a quiz on - which is always a ball of laughs. We are - as I describe my daughter - as sensible as a box of frogs!! We got some real belly laughs out of the audience by answering the questions wrongly. The best one "Who is buried under Kings Cross Station" - answer is Boadicea - we yelled out was "The Northern Line" which is the underground tube line.... Well it got a muted laugh.
Quiz nights are all about having a good laugh and enjoying the company of the people there. We did that - it took some pressure off me tonight as I've heard some more about my dad and it is "good" news in that - contrary to my belief they want him to come home - which is the best place in reality but I was never sure that they could - as Jean Luc Picard says "make it so". They can indeed provide the equipment and the personnel to do this. In many ways this is what we have been trying for months to find out. I think that dad would be "happy to die at home" and that mum would be "happy to nurse him" there too. Given the proper levels of support that may be a much better thing than him being in a home or a hospice.
I'm surprised that this is an option but I will be very happy if it does come about and that dad can be at home until "the end", it will be much better than where he is now - we all hate it, it is not where dad should be. It is becoming upsetting to me now. Dad looks like someone who lived through Belsen and you just know what the outcome is going to be. for the moment my own life is on hold as I come to terms with his situation and also my own. The issue being here that all my friends from school, who I was out with tonight, had their fathers die on them over the past 6 years. One was sudden, one was quick and one was expected and they are very good to me as they understand the problems I have (as a cancer survivor) to see my father going through the final stages in his life in front of my eyes. At one time I foresaw this happening to me. It is distressing and only in the last few days have I actually felt emotional about it.
Last night I read the Marie Curie Nurses web site and the end of life piece and although I know what is going to happen I did have a very solemn moment - reflecting on what it meant to us all. I see that the person dying in some ways fades away but it is the knowledge that I may not be there at the end that somehow nags at me. I may explain this later on - it is to do with the "abuse" my mother took at her mother's funeral and how my brother and I turned out to be a little bit like the Kray Twins that day and a bunch of remote family were given a stark choice. No one ever makes my mother cry with ugly words. Hell I could have broken bones that day and I'm the quiet one. However whenever I get near these people, even today, they get the hell out of my way :-) You can upset me but not my family - ever. Not sure I'm quite Joe Pesci in Goodfellas but you can imagine my brother and I in that situation. Funny I should think of that at this time!
I feel that I need to go up next week to spend some time with my mum. I feel a bit of a fraud as I never felt dad would be allowed home but if that's what is going to happen then I'm pleased. I'm happy that he may be allowed to spend his last days with my mum and in his own house. I was beginning to hate the way he was being de-humanised by "the system" where he was. I hope that he gets home and finds some peace there.
Thursday, June 14, 2012
The Future
The recent "disturbance in the Force" :-) for want of a better phrase includes my dad, obviously, many meetings and outings which messed up my diet and of course closing down the business and trying to decide what to do next. At the moment I'm trying to get some focus on this as things need to be sorted.
I'm trying to weigh up all the things I want to do and realise that there are some great opportunities out there and some exciting things to do but I mustn't give in to making a rash decision and jumping before I've thought this through. Many have told me to go back into the charity sector but I'm not sure I'd go back to my previous employers - it would be too easy and anyway, my successor is, as I'm certain he would, doing a great job and bringing the enthusiasm of youth to bear on the role. I may make a few calls to the CEOs and see what they think about me taking a Director level role in a Charity - I would imagine that would suit as it wouldn't be business as usual and it would allow me to use my experience etc. Of course that's just one thing on the cards.
My diet is OK at the moment although I'm neither on one thing or the other. I'm eating sensibly interspersed with the odd big meal and beer - but I wouldn't mind some settling back into my slow carb diet. I haven't put any weight on in the past 3 weeks since I stopped following it to the letter. I really had no chance of following it but I'm eating roughly the same things and just not over doing any of the stuff that will set me back onto weight gain.
I feel a bit faddy having got the juicer and the slow carb diets going and then stopped them but I will get back onto more healthy eating to a strict diet when things settle down a bit. I did manage to get some FOCC this morning for the first time in ages.
I'm trying to weigh up all the things I want to do and realise that there are some great opportunities out there and some exciting things to do but I mustn't give in to making a rash decision and jumping before I've thought this through. Many have told me to go back into the charity sector but I'm not sure I'd go back to my previous employers - it would be too easy and anyway, my successor is, as I'm certain he would, doing a great job and bringing the enthusiasm of youth to bear on the role. I may make a few calls to the CEOs and see what they think about me taking a Director level role in a Charity - I would imagine that would suit as it wouldn't be business as usual and it would allow me to use my experience etc. Of course that's just one thing on the cards.
My diet is OK at the moment although I'm neither on one thing or the other. I'm eating sensibly interspersed with the odd big meal and beer - but I wouldn't mind some settling back into my slow carb diet. I haven't put any weight on in the past 3 weeks since I stopped following it to the letter. I really had no chance of following it but I'm eating roughly the same things and just not over doing any of the stuff that will set me back onto weight gain.
I feel a bit faddy having got the juicer and the slow carb diets going and then stopped them but I will get back onto more healthy eating to a strict diet when things settle down a bit. I did manage to get some FOCC this morning for the first time in ages.
Wednesday, June 13, 2012
Thinking About - Quality of Life
I wonder whether there's a point where the QOL argument and keeping someone alive because of your oath causes the sort of problems we - along with many others must face. I think that sometimes I want dad to go to sleep and to not wake up for his sake as well as my mums. I do find that everyone suffers. You suffer seeing your father/husband just deteriorating in front of your eyes. It isn't the person you know - he looks like him - a very thin and drawn - perhaps frightened version. It isn't how I'd want to remember him and when you hear that cliché that "it was a release" I can now understand that sentiment.
The family too becomes stressed out and to see someone you love in pain, losing weight, unable to help themselves, completely reliant on others really isn't nice at all. I do feel that - loss of dignity - is something that I'd find difficult myself to live with and I think that dad is bearing up well on that front.
You can see why assisted death would be an option for some people as in reality we didn't expect things to be like this and we really expected things to be a little more peaceful and certainly not to end like this in a bed, unable to move, fighting infection and diabetes and many other things. Somehow, the shock of sudden death may be more acceptable, more painful perhaps but at least it wouldn't be this long drawn out process for him and us.
I do feel so sorry for him and for mum. I'm sort of distanced from it and also don't have the day-to-day agony of it but somehow I wish it is concluded quickly for both their sakes. It isn't going to be nice it isn't great now though so perhaps it would be the fairest way out. But as my dad often told me "Life's not fair boy" :-)
The family too becomes stressed out and to see someone you love in pain, losing weight, unable to help themselves, completely reliant on others really isn't nice at all. I do feel that - loss of dignity - is something that I'd find difficult myself to live with and I think that dad is bearing up well on that front.
You can see why assisted death would be an option for some people as in reality we didn't expect things to be like this and we really expected things to be a little more peaceful and certainly not to end like this in a bed, unable to move, fighting infection and diabetes and many other things. Somehow, the shock of sudden death may be more acceptable, more painful perhaps but at least it wouldn't be this long drawn out process for him and us.
I do feel so sorry for him and for mum. I'm sort of distanced from it and also don't have the day-to-day agony of it but somehow I wish it is concluded quickly for both their sakes. It isn't going to be nice it isn't great now though so perhaps it would be the fairest way out. But as my dad often told me "Life's not fair boy" :-)
Preparing to go up again
It is now 4 weeks since dad went into Hospital. I've been up for four days a couple of weeks ago but I'm guessing that I ought to go up next week. Dad is sleeping a lot more these days and is becoming more incontinent. He;s painfully thin and has no energy and apparently just looks very sorry for himself. That's not surprising is it really?
I hope to hear that we will hear tomorrow what they are going to do next. Coming home - no I can't see it but perhaps we will find out something more tomorrow.
I think I have the week free next week and I've just got to move some stuff around (non important) and go and do some supporting of my mum and my brother and his wife who have borne the brunt of it so far.
I hope to hear that we will hear tomorrow what they are going to do next. Coming home - no I can't see it but perhaps we will find out something more tomorrow.
I think I have the week free next week and I've just got to move some stuff around (non important) and go and do some supporting of my mum and my brother and his wife who have borne the brunt of it so far.
A Coordinated View
So we find out after close to 4 weeks that Dad's Liver problem was acute and it was good that he came in to Hospital and get that treated. Now call me stupid but no one has ever mentioned his Liver as a problem until the last few days!!! So there you have one of the problems we are facing. We thought he was in there because of a diabetic problem and all along they were also treating his Liver issues. Now he is stable - of course he is still suffering from Cancer and that is progressing. But why oh why did it take almost 4 weeks to tell us. Well it appears that different doctors all tackle different areas and so we've only ever seen the diabetic guys.
Hopefully something is now being done about telling us what the hell is going on. The problem appears to be that not one person or department is taking a holistic view each is tackling their own fiefdom! Anyway - let's hope that they finally get their act together and resolve this in the next day or so. That way we might be informed of how things are. Poor old mum is getting all stressed out about things now and if someone would just make a decision it would be nice.
Hopefully something is now being done about telling us what the hell is going on. The problem appears to be that not one person or department is taking a holistic view each is tackling their own fiefdom! Anyway - let's hope that they finally get their act together and resolve this in the next day or so. That way we might be informed of how things are. Poor old mum is getting all stressed out about things now and if someone would just make a decision it would be nice.
Tuesday, June 12, 2012
A Night Out As Top Banana
As Master of my Lodge I get to be an "Honoured Guest" of many other Lodges and so tonight I was on my first visit as Master of my Lodge and it is "funny (peculiar)" how I was treated today. Now this may sound funny but I was treated a little differently because of the office I held which is great of course but also slightly unnerving because - only a few weeks ago I was treated quite differently. Well, what do I care, it was a great night out and Flocky Bicep (bless him) came and picked me up and dropped me off - way beyond the call of duty so I was able to have a few drinks there and he dropped me off at my local pub where my old school chums were meeting up. Much hilarity because I was all dressed up in my Morning Suit and Waistcoat and with my big regalia bag but - they are my oldest and dearest friends so if they can't rip the piss out of me who can?
Not heard about my dad - will talk to my mum tomorrow. Did speak to my friend tonight (who's father died as I was diagnosed) and he was able to just listen and understand me - he's also a good friend. Then we chatted about my future and what I want to do and I'm still undecided. I have a view that I'd like to get involved back in the consultancy and programme management business but on my terms. I still, however, don't really know.
I wrote a card to my dad for Father's Day on Sunday and that will arrive at the house on Thursday - so I need to let my mum know - hopefully it will be found to be amusing? I hope so - it is a typical "me" card so I hope he likes it.
Not heard about my dad - will talk to my mum tomorrow. Did speak to my friend tonight (who's father died as I was diagnosed) and he was able to just listen and understand me - he's also a good friend. Then we chatted about my future and what I want to do and I'm still undecided. I have a view that I'd like to get involved back in the consultancy and programme management business but on my terms. I still, however, don't really know.
I wrote a card to my dad for Father's Day on Sunday and that will arrive at the house on Thursday - so I need to let my mum know - hopefully it will be found to be amusing? I hope so - it is a typical "me" card so I hope he likes it.
Talking out of turn
I suddenly realised that I was talking to Mrs. F. today about my dad and talking about death and weakness and incontinence and all the horrible stuff (the indignity if you like) that surrounds it and realised A was standing right next door to me. So I quickly apologised but she said she was fine about it. We are pretty open about these things and I don't feel that I should overly protect anyone but of course, I do say it as I see it sometimes and I hope you (the reader) or my friends and family think it is a bad thing. I feel in some ways that perhaps I've earn't the badge but of course not everyone looks at death "that way".
I'm pretty lucky in that one of the interesting things about Freemasonry is that it invites you to reflect on death as well as all other aspects of life and to think about how you are viewed and how you treat people and many other things that - sort of - make you think slightly differently about life and death. I think when I suggested that working at the charity was a way of paying back my experiences might be taken as a twee statement but I meant exactly that and don't forget that in working at the charity - things went both ways - it was mutually beneficial as it "healed" me and allowed me a bolt hole away from the high pressured environment that had probably, in some way, aided and abetted my cancer.
I do have some faith but it isn't absolute and it was shaken to the core many times over the year and I don't always "get it" I can understand it and many of my friends are good Christian folk and who really are interesting to talk to and listen to but somehow I never did get back to it, perhaps after my friend died when we were very young leaving a young family and all that entailed.
So, death is the inevitability of existence and no one can cheat it - no one at all, no matter who you are, how rich you are and so on. The great leveller as someone once said. In my world, the last thing I want to happen is for my dad to die but he has no quality of life now, he has no dignity, he cannot do anything, he isn't completely miserable I suppose but it's not him, it's not the man I've known and admired all my life. Life is precious people say and I guess that is so. He is of course precious and dear to us all and of course to my mum and my brother possibly a little more so than me. I'd wager that my dad has a similar psychological profile to me although I'd say he is far more introverted than I am he does have very similar traits (or I do of course) and that's not surprising.
I'm saying that because I'm being quite pragmatic about things and I've taught my children to be so. We all know what is going to happen and we know that we wont like it but it is going to happen anyway. We can celebrate the good times and that's what we do because they were good times. In the last 10 or more years, we haven't seen much of my family and so they are actually quite remote in a way - we've seen more of them recently or at least tried to but I remember my grandparents dying and after a while I wasn't allowed to go and see one of them and I was busy building my own life, getting married, working my butt off and so on. That's what happens. My dad knows that and whilst we spoke on the phone irregularly over the past 10 years our contact has gradually faded away as he himself grew towards this illness.
Some 18 months to 2 years ago I remember going to see my dad and coming home being very upset. I was upset because in the 3 or 4 days I was there he barely spoke to me, he just sat there and watched TV all day long and as long as I didn't disturb his routine I was tolerated. Don't get me wrong, he was already ill by this time and no one knew any different we just thought he was getting old, set in his ways and grumpy :-) When I say tolerated I mean that in the way that as long as I fitted around the routine it was OK. In some ways it made a lot of sense when he was diagnosed and whilst mum and my brother beat themselves up about it, dad would never have gone to the doctors because he felt grumpy and as he wouldn't have a blood test they would never have found out what was wrong with him back then anyway and - would they have even found it then? I doubt it.
So where am I going with this. Oh yes, it's like me at the moment. I take no control over my kids, I am interested to help them whenever they ask, I will happily check their work, their contracts and provide advice but it is their life and theirs alone. My dad was like that with me. I could always ask if I wanted but he didn't interfere. My brother is very different needing a close relationship altogether. I flew the nest a long time ago, I'm close to my mum but not in a lovey dovey sort of way. I speak to my mum everyday now - I only used to call once a week before. I probably only saw my folks once a year before that - maybe twice and when they lived here we saw them every month especially when the grandchildren were young - which I thought was important.
So - I'm working out that I'm being all matter of fact about this, that I'm being completely real with the kids about granddad and that I'm fully expecting to have to be "the strong one" for the forthcoming events. I'm sure that I will be able to do that, I probably wont like it but it is just something I'll have to do. I find it all rather strange because it is played out at a distance and I'm not there dealing with it day to day - it is very stressful I can tell from my conversations with mum. Hopefully tomorrow someone will come to some decisions and provide some options for a way forward. It will be 4 or 5 weeks since all this started and still there is no resolution in sight. It's hard enough to see him in hospital and know that he is unlikely to walk again now but not knowing what the future holds is still quite difficult. I think we all know what that future is but when and how need to be broached soon too. Things can't keep on going like this indefinitely.
In some ways, I'd like to get a call in the morning saying that it is all over and finally that would mean that dad would be at peace and rested. In his mind he is still going to come home when he feels better. He thinks sometimes that he will go to sleep and not wake up and I see fear in his eyes for the first time ever. I see how this cancer has brought a great man down to a point where he is once again almost as helpless as a child but at the same time his mind isn't a childs, he realises that things aren't right and it really isn't fair, it's cruel and to go back to my original notes above how can you reconcile your beliefs with something so cruel? I guess life's like that - although a compassionate entity would surely take a different view?
I suppose things will be what they will be soon enough and I guess people will look at me a bit strange (they do now anyway) because to me the issue isn't how we die, it's how we lived and what we did with out lives that's important. I look at my two kids and see well balanced, fun loving kids who get on well together (I wish my brother and I did even now) and who work hard and that's my pleasure. Then there's a number of other recipients that will never know me but will have been helped and that's my legacy too. I'm not convinced I've done everything I want to yet but I am sure that I've provided the best I can for my kids as my parents did for me.
Well - this blog is rambling on a bit now but it helps to get this stuff out of my head - goodness knows where it all comes from?
I'm pretty lucky in that one of the interesting things about Freemasonry is that it invites you to reflect on death as well as all other aspects of life and to think about how you are viewed and how you treat people and many other things that - sort of - make you think slightly differently about life and death. I think when I suggested that working at the charity was a way of paying back my experiences might be taken as a twee statement but I meant exactly that and don't forget that in working at the charity - things went both ways - it was mutually beneficial as it "healed" me and allowed me a bolt hole away from the high pressured environment that had probably, in some way, aided and abetted my cancer.
I do have some faith but it isn't absolute and it was shaken to the core many times over the year and I don't always "get it" I can understand it and many of my friends are good Christian folk and who really are interesting to talk to and listen to but somehow I never did get back to it, perhaps after my friend died when we were very young leaving a young family and all that entailed.
So, death is the inevitability of existence and no one can cheat it - no one at all, no matter who you are, how rich you are and so on. The great leveller as someone once said. In my world, the last thing I want to happen is for my dad to die but he has no quality of life now, he has no dignity, he cannot do anything, he isn't completely miserable I suppose but it's not him, it's not the man I've known and admired all my life. Life is precious people say and I guess that is so. He is of course precious and dear to us all and of course to my mum and my brother possibly a little more so than me. I'd wager that my dad has a similar psychological profile to me although I'd say he is far more introverted than I am he does have very similar traits (or I do of course) and that's not surprising.
I'm saying that because I'm being quite pragmatic about things and I've taught my children to be so. We all know what is going to happen and we know that we wont like it but it is going to happen anyway. We can celebrate the good times and that's what we do because they were good times. In the last 10 or more years, we haven't seen much of my family and so they are actually quite remote in a way - we've seen more of them recently or at least tried to but I remember my grandparents dying and after a while I wasn't allowed to go and see one of them and I was busy building my own life, getting married, working my butt off and so on. That's what happens. My dad knows that and whilst we spoke on the phone irregularly over the past 10 years our contact has gradually faded away as he himself grew towards this illness.
Some 18 months to 2 years ago I remember going to see my dad and coming home being very upset. I was upset because in the 3 or 4 days I was there he barely spoke to me, he just sat there and watched TV all day long and as long as I didn't disturb his routine I was tolerated. Don't get me wrong, he was already ill by this time and no one knew any different we just thought he was getting old, set in his ways and grumpy :-) When I say tolerated I mean that in the way that as long as I fitted around the routine it was OK. In some ways it made a lot of sense when he was diagnosed and whilst mum and my brother beat themselves up about it, dad would never have gone to the doctors because he felt grumpy and as he wouldn't have a blood test they would never have found out what was wrong with him back then anyway and - would they have even found it then? I doubt it.
So where am I going with this. Oh yes, it's like me at the moment. I take no control over my kids, I am interested to help them whenever they ask, I will happily check their work, their contracts and provide advice but it is their life and theirs alone. My dad was like that with me. I could always ask if I wanted but he didn't interfere. My brother is very different needing a close relationship altogether. I flew the nest a long time ago, I'm close to my mum but not in a lovey dovey sort of way. I speak to my mum everyday now - I only used to call once a week before. I probably only saw my folks once a year before that - maybe twice and when they lived here we saw them every month especially when the grandchildren were young - which I thought was important.
So - I'm working out that I'm being all matter of fact about this, that I'm being completely real with the kids about granddad and that I'm fully expecting to have to be "the strong one" for the forthcoming events. I'm sure that I will be able to do that, I probably wont like it but it is just something I'll have to do. I find it all rather strange because it is played out at a distance and I'm not there dealing with it day to day - it is very stressful I can tell from my conversations with mum. Hopefully tomorrow someone will come to some decisions and provide some options for a way forward. It will be 4 or 5 weeks since all this started and still there is no resolution in sight. It's hard enough to see him in hospital and know that he is unlikely to walk again now but not knowing what the future holds is still quite difficult. I think we all know what that future is but when and how need to be broached soon too. Things can't keep on going like this indefinitely.
In some ways, I'd like to get a call in the morning saying that it is all over and finally that would mean that dad would be at peace and rested. In his mind he is still going to come home when he feels better. He thinks sometimes that he will go to sleep and not wake up and I see fear in his eyes for the first time ever. I see how this cancer has brought a great man down to a point where he is once again almost as helpless as a child but at the same time his mind isn't a childs, he realises that things aren't right and it really isn't fair, it's cruel and to go back to my original notes above how can you reconcile your beliefs with something so cruel? I guess life's like that - although a compassionate entity would surely take a different view?
I suppose things will be what they will be soon enough and I guess people will look at me a bit strange (they do now anyway) because to me the issue isn't how we die, it's how we lived and what we did with out lives that's important. I look at my two kids and see well balanced, fun loving kids who get on well together (I wish my brother and I did even now) and who work hard and that's my pleasure. Then there's a number of other recipients that will never know me but will have been helped and that's my legacy too. I'm not convinced I've done everything I want to yet but I am sure that I've provided the best I can for my kids as my parents did for me.
Well - this blog is rambling on a bit now but it helps to get this stuff out of my head - goodness knows where it all comes from?
Monday, June 11, 2012
What a weekend
I'm glad to see that I didn't blog here on Saturday night - I would have been wrecked :-) We managed to end up after my Installation in the bar for 7 (yes) 7 hours.... Considering I'd already had a few pints of beer, some wine and some port the following 7 hours of beer and whisky and no food may have contributed to the rather thick head I had on Sunday.
My Installation meeting was great - I really enjoyed it once I got past the bit I had to remember myself. Having next to no sleep on the Friday night with my mind racing didn't help either.
I've spoken to my brother and sort of heard his side of the story out and now I'm just going to leave him to do his thing - I see what he is thinking and he is doing the calls and stuff. I've offered whatever I can at this end. Mainly, I'm going to be the one who will end up doing all the calls and arrangements as I'm sure that they wont be able to. Anyway - let's see what happens with that when and if it happens. As for Dad, well he wasn't good yesterday and they gave him some pain killers which sent him off to sleep which is probably good but we will just have to see where it goes this week. The trouble is that no one is taking a whole life view for us - each specialist is doing there bit and no one is talking to the other person. This is the trouble with the way things can be. No one is looking at his cancer (I know they can't do anything) but they are treating the symptoms and maybe they ought to be thinking things through slightly differently - anyway, I kind of hope he isn't there for much longer. There is a possibility that we can get dad moved to a home that is local to mum - if that is the case then maybe things might get a bit better.
My Installation meeting was great - I really enjoyed it once I got past the bit I had to remember myself. Having next to no sleep on the Friday night with my mind racing didn't help either.
I've spoken to my brother and sort of heard his side of the story out and now I'm just going to leave him to do his thing - I see what he is thinking and he is doing the calls and stuff. I've offered whatever I can at this end. Mainly, I'm going to be the one who will end up doing all the calls and arrangements as I'm sure that they wont be able to. Anyway - let's see what happens with that when and if it happens. As for Dad, well he wasn't good yesterday and they gave him some pain killers which sent him off to sleep which is probably good but we will just have to see where it goes this week. The trouble is that no one is taking a whole life view for us - each specialist is doing there bit and no one is talking to the other person. This is the trouble with the way things can be. No one is looking at his cancer (I know they can't do anything) but they are treating the symptoms and maybe they ought to be thinking things through slightly differently - anyway, I kind of hope he isn't there for much longer. There is a possibility that we can get dad moved to a home that is local to mum - if that is the case then maybe things might get a bit better.
Saturday, June 09, 2012
Emotion versus Pragmatism
I think of myself as a bit cold and calculating and yet can get quite emotional (as you may have noticed in earlier blogs) over strange things these days. I'm currently reeling over my brother's assertion that dad can come home and that he can possibly find someone willing to spend time at home looking after him! It isn't going to happen as we don't have 1 to 1 nursing care in this country and he's barking mad if he thinks that there is the remotest possibility that anyone will do this unless he pays for it I suppose.
Totally impractical as my dad can't even move himself up in bed let alone get in or out of the same and he requires 24x7 care and my mum can't do it. He is no realist and believes that dad will come home. I'd love to think that it might be possible but there's no way that is going to happen and the sooner he stops telling my mum this bunkum the better I'll feel as I may have to give him a call and a bit of a slap if he keeps pissing my mum off. Doesn't he think it is difficult enough already? At least his wife has a bit of sense and I hope that she will give him a bloody good dressing down tomorrow after she has spoken to my mum. She and I had words earlier in the week and she and I know that it just isn't going to happen.
It looks as if they will be able to transfer dad to a nursing home which, I hope, will give mum more access and give him a little peace and quiet away from the hospital. It will allow mum to get a little more involved in his day to day care and to have him nearby. I said to her tonight that it is totally a case of what is good for dad and for her, that my brother's wishes and my wishes are not to come into that decision, it is what is best for him and her that are important. Unfortunately my brother doesn't work like that, he felt that dad was selfish in not having the full Whipple operation when it was offered - easy for him to say and easy for him as he wouldn't have had to go through it. The bypass was heavy enough and whilst it gave him a little more time, it really hasn't contributed to any greater quality of life (in my opinion).
I really don't need my brother adding to my mum's stress levels and he does annoy me that he spends his time advising on medical things when he isn't a doctor just an administrator in the system. He's full of great ideas found on the Internet but doesn't actually sort things out himself leaving it to others, like my mum, who he has asked to make a series of phone calls on Monday about this alleged 1 to 1 nursing he thinks exists. What a tosser, hopefully his wife will give him a slap around the face tomorrow to bring him to his senses.
Totally impractical as my dad can't even move himself up in bed let alone get in or out of the same and he requires 24x7 care and my mum can't do it. He is no realist and believes that dad will come home. I'd love to think that it might be possible but there's no way that is going to happen and the sooner he stops telling my mum this bunkum the better I'll feel as I may have to give him a call and a bit of a slap if he keeps pissing my mum off. Doesn't he think it is difficult enough already? At least his wife has a bit of sense and I hope that she will give him a bloody good dressing down tomorrow after she has spoken to my mum. She and I had words earlier in the week and she and I know that it just isn't going to happen.
It looks as if they will be able to transfer dad to a nursing home which, I hope, will give mum more access and give him a little peace and quiet away from the hospital. It will allow mum to get a little more involved in his day to day care and to have him nearby. I said to her tonight that it is totally a case of what is good for dad and for her, that my brother's wishes and my wishes are not to come into that decision, it is what is best for him and her that are important. Unfortunately my brother doesn't work like that, he felt that dad was selfish in not having the full Whipple operation when it was offered - easy for him to say and easy for him as he wouldn't have had to go through it. The bypass was heavy enough and whilst it gave him a little more time, it really hasn't contributed to any greater quality of life (in my opinion).
I really don't need my brother adding to my mum's stress levels and he does annoy me that he spends his time advising on medical things when he isn't a doctor just an administrator in the system. He's full of great ideas found on the Internet but doesn't actually sort things out himself leaving it to others, like my mum, who he has asked to make a series of phone calls on Monday about this alleged 1 to 1 nursing he thinks exists. What a tosser, hopefully his wife will give him a slap around the face tomorrow to bring him to his senses.
Friday, June 08, 2012
Nerves kicking in
I wasn't expecting to be a little nervous - but there you go, I can feel the nerves kicking in and I still haven't quite got my words right and so I'm working on those today - I have decided that today is all about getting it right. I've written my speech but I'm not really that happy about it at the moment, it doesn't quite flow, I have to make some subtle adjustments to emphasis and also just get the few funnies right - it's a big audience and so I need to be just above subtle but not in your face - working on that now :-)
I'd like to do my speech without notes but I've never done that before unless it has been an off the cuff performance which this never was going to be. Now I need to make sure I have all the necessary things ready - suit, tie, waistcoat, shoes are clean and so on - take some glasses so I can read my script and ensure that all the paperwork I need is available.
I just need to be myself, enjoy the day and make sure that I meet and greet everyone and work the room. It will be difficult as I'll be centre of attention for the day - I just need to ensure that my guests all look after each other as I will be somewhat swamped with people wanting to congratulate me and vie for my attention - I should be in my element but actually I never really enjoyed it that much.
I'd like to do my speech without notes but I've never done that before unless it has been an off the cuff performance which this never was going to be. Now I need to make sure I have all the necessary things ready - suit, tie, waistcoat, shoes are clean and so on - take some glasses so I can read my script and ensure that all the paperwork I need is available.
I just need to be myself, enjoy the day and make sure that I meet and greet everyone and work the room. It will be difficult as I'll be centre of attention for the day - I just need to ensure that my guests all look after each other as I will be somewhat swamped with people wanting to congratulate me and vie for my attention - I should be in my element but actually I never really enjoyed it that much.
Thursday, June 07, 2012
Just a matter of time
Like it is for all of us I suppose, eventually we will meet our destiny and we've now been told that dad's time with us is coming to an end and that he can only be made comfortable and will not be in a position to improve or gain any strength. It is very sad and distressing for the family to see him like this and I've often felt that this is the cruelty of the disease. It tears up your loved ones before your eyes and you've got no chance to do anything about it. In olden days, I'm guessing he would be dead by now as he would have contracted such a serious series of infections that would have been untreatable. These days, they can work miracles and indeed so they have but at what cost?
I remember going to the funeral of my uncle who died very suddenly and the vicar spoke about how sometimes it was better like that. He died young and whilst it was one hell of a shock we would always remember him like that, as we had known him the last time we saw or spoke to him. It was a hell of a shock to us all but I kind of understand what he was saying and in a way, and I really don't mean to be cruel, it might be better if dad didn't wake up tomorrow morning. I know you'll think that an awful thing to say but that's how it feels and he's enjoying no quality of life and isn't likely to either, he is deteriorating and being kept alive by the wonders of medical science.
This isn't the man who I've known all my life and it isn't the way I want to see him or how he would want to be seen either. I certainly don't want to remember him like this I want to remember him as my dad, as my father, the guy that taught me wood and metalwork and the forward defence stroke, to play football, fly a kite, build sandcastles and all that good father son stuff. Now he's a frail and frightened man, not even in his home, being looked after by overworked nurses and doctors and frankly wasting away before our eyes. I feel sorry for my mum who has stood up to all this for these past 10 months or so. Of course you never really want someone to die or to no longer be there but you never ever want them to suffer like this - although suffer may be too strong a word.
Cancer, as I've often said before, works on many levels beyond the disease itself because of the way it is perceived and understood and misunderstood all at the same time. Early posts explore this element of the disease and yet then it was about me and what I was going through and the shit I put my family through (note that it wasn't cancer that did that - it was my fault!). That's another one of those things you do. My fault, I caused suffering for others and so on - how strange is that. It's as if you had been hit by an uninsured driver and it was your own fault for being there at the wrong time! Bizarre thing cancer.
So, there's me being wicked and being concerned and looking in to dad's eyes and seeing the fear. Fear to go to sleep in case he doesn't wake up, of his eyes failing and being blind and then he looks at the flesh hanging down loosely from his arms and pulls a disgusted and fearful face at that. His voice is becoming feint and his strength is going, his patience is growing shorter and his comprehension skills are failing as he fails to understand what you say to him. Now his feet and hands are growing cold and gradually his body is shutting down.
I'm not sure if I'm just braving this out or have rationalised it in my head or through my own experience when looking back at my dark days. I wonder if things hadn't gone so well whether I'd have thought any differently. I'm hoping that I am thinking pragmatically about death. I hope that I have no regrets and that I am comfortable with my lot, that I made a difference to someone, anyone, and that I lived a good life and did the right things. I certainly feel this way more so because cancer became my great leveller and that I also learnt some key lessons during that time. I had 2 years to re-build myself and my confidence in the charity and whilst I saw some pretty bleak and awful things happening to other people, it made me realise how lucky I was. I also "made a difference" in the time that I was there, that was the thing, I did something for other people and many didn't know who I was.
I look back at achievements and they aren't what you think they may be. They are my children and their upbringing, their work for other people and their work ethic and maturity. I look at the difference I made to other lives and these things are my achievements. The rest of the things are material and transient, worth less now than when you bought them. We have everything we need, shelter, warmth, food, health - not sure what Maslow would make of it but there you go. In many ways I think another achievement may be to educate those friends and those acquainted with me that cancer isn't what they thought it was, that you could take an attitude to it and that you can beat it and you can come through it. Now I look back and wonder and see how people viewed me and I don't see myself in their description of me. I never really thought I was ill or even looked ill but some of the photos do show me looking drawn and grey, I now look a lot better and often get reminded by my mates that I used to look like sh1t :-)
So - big change in my attitude, 6 years ago I would have wanted a fast car, big house, dah de dah but now, that actually isn't on the important list at all.... However, not everyone thinks like that and so that also makes for an interesting time.
I remember going to the funeral of my uncle who died very suddenly and the vicar spoke about how sometimes it was better like that. He died young and whilst it was one hell of a shock we would always remember him like that, as we had known him the last time we saw or spoke to him. It was a hell of a shock to us all but I kind of understand what he was saying and in a way, and I really don't mean to be cruel, it might be better if dad didn't wake up tomorrow morning. I know you'll think that an awful thing to say but that's how it feels and he's enjoying no quality of life and isn't likely to either, he is deteriorating and being kept alive by the wonders of medical science.
This isn't the man who I've known all my life and it isn't the way I want to see him or how he would want to be seen either. I certainly don't want to remember him like this I want to remember him as my dad, as my father, the guy that taught me wood and metalwork and the forward defence stroke, to play football, fly a kite, build sandcastles and all that good father son stuff. Now he's a frail and frightened man, not even in his home, being looked after by overworked nurses and doctors and frankly wasting away before our eyes. I feel sorry for my mum who has stood up to all this for these past 10 months or so. Of course you never really want someone to die or to no longer be there but you never ever want them to suffer like this - although suffer may be too strong a word.
Cancer, as I've often said before, works on many levels beyond the disease itself because of the way it is perceived and understood and misunderstood all at the same time. Early posts explore this element of the disease and yet then it was about me and what I was going through and the shit I put my family through (note that it wasn't cancer that did that - it was my fault!). That's another one of those things you do. My fault, I caused suffering for others and so on - how strange is that. It's as if you had been hit by an uninsured driver and it was your own fault for being there at the wrong time! Bizarre thing cancer.
So, there's me being wicked and being concerned and looking in to dad's eyes and seeing the fear. Fear to go to sleep in case he doesn't wake up, of his eyes failing and being blind and then he looks at the flesh hanging down loosely from his arms and pulls a disgusted and fearful face at that. His voice is becoming feint and his strength is going, his patience is growing shorter and his comprehension skills are failing as he fails to understand what you say to him. Now his feet and hands are growing cold and gradually his body is shutting down.
I'm not sure if I'm just braving this out or have rationalised it in my head or through my own experience when looking back at my dark days. I wonder if things hadn't gone so well whether I'd have thought any differently. I'm hoping that I am thinking pragmatically about death. I hope that I have no regrets and that I am comfortable with my lot, that I made a difference to someone, anyone, and that I lived a good life and did the right things. I certainly feel this way more so because cancer became my great leveller and that I also learnt some key lessons during that time. I had 2 years to re-build myself and my confidence in the charity and whilst I saw some pretty bleak and awful things happening to other people, it made me realise how lucky I was. I also "made a difference" in the time that I was there, that was the thing, I did something for other people and many didn't know who I was.
I look back at achievements and they aren't what you think they may be. They are my children and their upbringing, their work for other people and their work ethic and maturity. I look at the difference I made to other lives and these things are my achievements. The rest of the things are material and transient, worth less now than when you bought them. We have everything we need, shelter, warmth, food, health - not sure what Maslow would make of it but there you go. In many ways I think another achievement may be to educate those friends and those acquainted with me that cancer isn't what they thought it was, that you could take an attitude to it and that you can beat it and you can come through it. Now I look back and wonder and see how people viewed me and I don't see myself in their description of me. I never really thought I was ill or even looked ill but some of the photos do show me looking drawn and grey, I now look a lot better and often get reminded by my mates that I used to look like sh1t :-)
So - big change in my attitude, 6 years ago I would have wanted a fast car, big house, dah de dah but now, that actually isn't on the important list at all.... However, not everyone thinks like that and so that also makes for an interesting time.
Out Again
I was out last night at the Jazz night which was good - it looks as if I haven't been at all this year! So perhaps not been for more like 8 months. It doesn't seem that long ago but perhaps it has been as the last signature in the book of mine was September 2011! It was good to get along to the event anyway and enjoyed the beer and the music.
Tonight, it looks like I am out again to meet my friend who is also the Director of Ceremonies for Saturday and I know that he will want to run through some procedural stuff and make sure that I'm prepared for it.
My dad should be being assessed today to be given a holistic view of where we are and what needs to be done. I'm pretty much of the opinion that if he doesn't get his strength back he will need to stay in some form of care and whether that is in a Hospital bed or some Care Home I just don't know. Hopefully though we will get some sort of resolution on this as the journey to and from the Hospital is 30 minutes each way and it is wearing on my mum as well as for my brother and sister in law. If he can come home - which he may appreciate, he will need a lot of care and this is the problem - he almost needs one to one 24x7 cover, I cannot imagine that is likely given how things are in the NHS and Social Services and I don't think that Marie Curie nurses would be right. But I am jumping the gun here and we need to hear what the specialists say.
Unfortunately it is only a matter of time though and making him comfortable and stable is the priority as well as ensuring that he is receiving pain killers as and when they may be required. I still feel quite remote from it all and wonder if that is something unusual in my psyche? Other things provoke emotional responses but not this - well not as deep or spontaneously. I'm wondering whether I'm some sort of weirdo :-)
Tonight, it looks like I am out again to meet my friend who is also the Director of Ceremonies for Saturday and I know that he will want to run through some procedural stuff and make sure that I'm prepared for it.
My dad should be being assessed today to be given a holistic view of where we are and what needs to be done. I'm pretty much of the opinion that if he doesn't get his strength back he will need to stay in some form of care and whether that is in a Hospital bed or some Care Home I just don't know. Hopefully though we will get some sort of resolution on this as the journey to and from the Hospital is 30 minutes each way and it is wearing on my mum as well as for my brother and sister in law. If he can come home - which he may appreciate, he will need a lot of care and this is the problem - he almost needs one to one 24x7 cover, I cannot imagine that is likely given how things are in the NHS and Social Services and I don't think that Marie Curie nurses would be right. But I am jumping the gun here and we need to hear what the specialists say.
Unfortunately it is only a matter of time though and making him comfortable and stable is the priority as well as ensuring that he is receiving pain killers as and when they may be required. I still feel quite remote from it all and wonder if that is something unusual in my psyche? Other things provoke emotional responses but not this - well not as deep or spontaneously. I'm wondering whether I'm some sort of weirdo :-)
If I may?
A Bradbury Quote from the Locusts (Locusts of Mars) Martian Chronicles.
This is the power of writing - it doesn't get much better than this to screw with your mind! :-)
"The rockets set the bony meadows afire, turned rock to lava, turned wood to charcoal, transmitted water to steam, made sand and silica into green glass which lay like shattered mirrors reflecting the invasion, all about. The rockets came like drums, beating in the night. The rockets came like locusts, swarming and settling in blooms of rosy smoke. And from the rockets ran men with hammers in their hands to beat the strange world into a shape that was familiar to the eye, to bludgeon away all the strangeness, their mouths fringed with nails so they resembled steel-toothed carnivores, spitting them into their swift hands as they hammered up frame cottages and scuttled over roofs with shingles to blot out the eerie stars, and fit green shades to pull against the night. And when the carpenters had hurried on, the women came in with flowerpots and chintz and pans and set up a kitchen clamor to cover the silence that Mars made waiting outside the door and the shaded window. "
Imagine a book filled with such wonderful prose - there you have the Martian Chronicles....
This is the power of writing - it doesn't get much better than this to screw with your mind! :-)
"The rockets set the bony meadows afire, turned rock to lava, turned wood to charcoal, transmitted water to steam, made sand and silica into green glass which lay like shattered mirrors reflecting the invasion, all about. The rockets came like drums, beating in the night. The rockets came like locusts, swarming and settling in blooms of rosy smoke. And from the rockets ran men with hammers in their hands to beat the strange world into a shape that was familiar to the eye, to bludgeon away all the strangeness, their mouths fringed with nails so they resembled steel-toothed carnivores, spitting them into their swift hands as they hammered up frame cottages and scuttled over roofs with shingles to blot out the eerie stars, and fit green shades to pull against the night. And when the carpenters had hurried on, the women came in with flowerpots and chintz and pans and set up a kitchen clamor to cover the silence that Mars made waiting outside the door and the shaded window. "
Imagine a book filled with such wonderful prose - there you have the Martian Chronicles....
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