John has been told that he will live longer than we thought , thanks to great care and magical medicine!
I guess no one really knows, and I wish they had never given us their idea of a time, it hangs over your head, makes mornings a bit scary, for me at least. I remember feeling a bit scared in the morning when I was staying with dad, and even when I was not there, being relieved when the first text was answered.
Somehow night time is harder when there is sickness in your life.
So onwards and upwards, maybe make some plans, I felt scared to look too far ahead on January 1st.
I was worried that we would not get to London for the theatre, but wanted to risk the booking because having nice things to look forward to, is good for me , good for folk.
Today we got some back dated benefits too, so all in all, a day to feel grateful, lots of things for my gratitude journal.
Thank you to whoever is to be thanked, "the universe" "existence" " scientists" "doctors" loving family", "loving friends" " god" "goddess" all the folk who prayed, and lit candles.
amen!
Thursday, 30 January 2014
Wednesday, 29 January 2014
Last day and Marie Curie and hospital week!
Hello dear blog,
John had his last full Tuesday at Marie Curie yesterday. He enjoyed it ,saw the doctor, who gave him a lot of encouragement,and reminded him he will always be their patient.
He can choose to go from 12-3 on Tuesdays now, to Daffodil group,he will go under his own steam though. That is fine , a taxi each way once a week will be fine. We have the attendance budget now.
We got a carer to take John to Lynda Mac Cartney this morning to have his bloods done, tomorrow he will go to see the oncologist, again with a carer.
We have so many vouchers that we have not used , so we might as well use them up.
I do not like going there, and I don't like the carers coming in in the mornings, I feel so very very tired at the minute, party January, partly stress, partly 18 months living with John in this new situation.
I feel like running away some days, trying to keep cheerful, keep it together, is becoming more of an effort.
I feel quite restricted, I do not have much spontaneity in my life these days.I was amazed at how much I enjoyed the journey to Chester , like getting out of school. Last week of the month so a good bit of work going on for me, which I love, but feel so drained after it.
I am going to take on a pro bono client today, an old client who is in need and has no money.I am happy to do it I have grown very fond of this young woman.
I am enjoying the Last Saturday Event,I love my two counsellors in Chester and my guy here in Liverpool.
I still see two Young folk from time to time, one almost weekly, they have agreed to come when I am here, no strict rules about weekly sessions, so it suits me well enough.
I like my work, it keeps me in the "normal world"
I hope I have got the hotel in London booked up , they have sent me two reservation numbers, one with one room one adult ,the other with two rooms, but still just one adult. I think when we get there it will all be ok, but they do not have much English on reception, and the on line paperwork, shows this up. This has been a very tiring occupation, getting this done, who knew booking a hotel in London would be so stressful
I am looking forward to the 8th though, DV when we all set off , everything will fall into place and we will have a memorable 24 hours.
John might go to London that week, we wait to see what the oncologist has to say tomorrow.
I was awake for a few hours in the night and listened to the State of the Union speech by Barack Obama, I thought it was wonderful quite inspirational, but what do I know, the political commentator thought he was a bit jaded.it has not been and easy Presidency for him.
So I am here and here I will have to stay for now, and I will make the bast of it, what else is there to do? When life hands you lemons, make lemonade.
All shall be well
and all shall be well
and all manner of things shall be well.
and so it is !
John had his last full Tuesday at Marie Curie yesterday. He enjoyed it ,saw the doctor, who gave him a lot of encouragement,and reminded him he will always be their patient.
He can choose to go from 12-3 on Tuesdays now, to Daffodil group,he will go under his own steam though. That is fine , a taxi each way once a week will be fine. We have the attendance budget now.
We got a carer to take John to Lynda Mac Cartney this morning to have his bloods done, tomorrow he will go to see the oncologist, again with a carer.
We have so many vouchers that we have not used , so we might as well use them up.
I do not like going there, and I don't like the carers coming in in the mornings, I feel so very very tired at the minute, party January, partly stress, partly 18 months living with John in this new situation.
I feel like running away some days, trying to keep cheerful, keep it together, is becoming more of an effort.
I feel quite restricted, I do not have much spontaneity in my life these days.I was amazed at how much I enjoyed the journey to Chester , like getting out of school. Last week of the month so a good bit of work going on for me, which I love, but feel so drained after it.
I am going to take on a pro bono client today, an old client who is in need and has no money.I am happy to do it I have grown very fond of this young woman.
I am enjoying the Last Saturday Event,I love my two counsellors in Chester and my guy here in Liverpool.
I still see two Young folk from time to time, one almost weekly, they have agreed to come when I am here, no strict rules about weekly sessions, so it suits me well enough.
I like my work, it keeps me in the "normal world"
I hope I have got the hotel in London booked up , they have sent me two reservation numbers, one with one room one adult ,the other with two rooms, but still just one adult. I think when we get there it will all be ok, but they do not have much English on reception, and the on line paperwork, shows this up. This has been a very tiring occupation, getting this done, who knew booking a hotel in London would be so stressful
I am looking forward to the 8th though, DV when we all set off , everything will fall into place and we will have a memorable 24 hours.
John might go to London that week, we wait to see what the oncologist has to say tomorrow.
I was awake for a few hours in the night and listened to the State of the Union speech by Barack Obama, I thought it was wonderful quite inspirational, but what do I know, the political commentator thought he was a bit jaded.it has not been and easy Presidency for him.
So I am here and here I will have to stay for now, and I will make the bast of it, what else is there to do? When life hands you lemons, make lemonade.
All shall be well
and all shall be well
and all manner of things shall be well.
and so it is !
Monday, 27 January 2014
Recovery time.
What a mixed time we had in Castlenel, so much joy so much appreciation of the old house and all we have done. Family fun with the new pizza oven.
Neighbours and local people making a fuss of us ,just being there in lovley Castalla.
Then our cleaning lady asked for a raise and all hell broke lose.
I made the mistake of agreeing to it, a mere few euro a week, much more than we spend on a round of coffees.
That got BP up in arms, not just that he disagreed with me, but such aggression, and a horrible destructive way of putting his point across.
I also hear from him, I am unable to peel potatoes, load the dishwasher, I leave the taps running in the Jardin , which costs A FORTUNE, I asked if we could have the a/c on in his room to help boost the heat in LA, answer NO. I was shouted at because I stripped my bed and left MY room as I like to leave it went I leave Castlenel.
He was very unkind about Sara, and my arrangements with her. He expects me to have magical powers to know what she has to do when he is in the house for five months in winter.
He wants special arrangements for Frank , we have to use him to taxi us around, we are encouraged to buy him Christmas gifts,and Sophie too,who has nothing to do with La comparsa.
Sara's loyal contribution, week in week out, seems to go unnoticed or criticised.
I have always made sure the boys could always be in the same room with us since the divorce, did not want them to feel awkward, and they do not as far as I understand it. But it has been at a cost to me. Phil treats me badly, a lot. Critical , uses put downs, corrects what I do.
They are big people now, I have to take care of myself and John.
I wonder what gave BP him the idea I am going to do what he demands, or even asks .I have my own views, my own way of doing things. He thinks shouting or sulking will get him what he wants, and sadly all too often, it works for him.
I have not asked for much from La comparsa, Sophie's terrace for my plants, a new bathroom, and a cleaning woman.
I have supported others projects, in the " Spirit of La comparsa" but it has not been appreciated, simply expected.
I really have no use or need of a Pizza oven, would much prefer a stove or money towards the bathroom.But I have been supportive.
When I ask for a few euro for Sara, it causes a rammy! So where is the spirit of la comparsa from BP?
No where in sight, nowhere on the horizon.
The amount of discomfort that this last visit caused me and worse John, has brought me to my limit.
I have a long fuse, but once I reach the end of it. Bas Halas- Finish.
He was upset that Scott told Carmen not he help him anymore.It did not occur to him he needs to pay for their help.Good grief I paid Christina and Scott, 150 euro for their help getting a good dentist and making appointments and taking me there, worth every penny.
If you have a generosity of spirit, by enlarge it makes life happier, oftentimes it comes back to you in unexpected ways.If not ,so what.We do not do it to get things back we do it " just because" it feels good or it is the right thing to do for another person.
If I want something , I just pay for it. Dad's window, which in fact I decided to get because Phil was complaining of the cold. I could have gone to Australia with that money.
I am glad I honoured Dad but even so, I meant well ,that Phil would be warmer in winter.
And I feel good because it looks lovely and everyone benefits.
I got John's room done, which not only benefited La Comparsa, it gave Phil an interest over the winter, and work for local folk.Which is important to me.
We went to Castlenel for John , it was an important week, and BP seemed on the one hand try to be kind to John, and on the other hand, seemed unable to put himself aside and just lighten up.
Certainly with me and especially after Sara asked for more money.
His response the second time I brought up Sara, at the cafe, which I thought would be safer, was very alarming for John, he went so white, and had the flashing lights in his eyes ,he gets them under stress, thankfully he had a good long sleep when we got home, and wakened up feeling a bit better but very tired.
I felt so crushed, I could not have a row, but I felt like it, and still do,as John would have been badly affected by it, and Philip was trying so hard to fix it, to mediate.
And in my experience, BP is basically unreasonable till he gets his own way, or he declares his unhappiness, and everyone is affected by this.TWAS ever thus.
If things go his way he is all sweetness and light.
On this journey that John and I are on, we need plenty of loving family and friends around us, or time in a tranquil atmosphere to be together and enjoy what time we have,,and even then it is a tough road.
We do not need BP and his irrational thinking and behaviour. We need to be much more robust before we can tolerate him in our lives.
We were only home an hour, when Brian emailed to say, I see from facebook that you are working on Saturday, would John like a trip to Dobbies, and he did, and they went off, leaving me to enjoy my afternoon.
Andrew's pictures are wonderful, capture the happy times that we spent there, thank goodness, friends all over the world are enjoying the pictures, and commenting on the happy family , the lovely oven, the great photographer. The photo's help me capture the happy moments at Castlenel, and the memory of the lovely neighbours , and shopkeepers who welcomed us back again.
All shall be well,
and all shall be well
and all manner of things shall be well.
Peace to the North
Peace to the South
Peace to the East
Peace to the West,
Peace be without,
Peace be within,
PEACE PEACE PEACE
.
Neighbours and local people making a fuss of us ,just being there in lovley Castalla.
Then our cleaning lady asked for a raise and all hell broke lose.
I made the mistake of agreeing to it, a mere few euro a week, much more than we spend on a round of coffees.
That got BP up in arms, not just that he disagreed with me, but such aggression, and a horrible destructive way of putting his point across.
I also hear from him, I am unable to peel potatoes, load the dishwasher, I leave the taps running in the Jardin , which costs A FORTUNE, I asked if we could have the a/c on in his room to help boost the heat in LA, answer NO. I was shouted at because I stripped my bed and left MY room as I like to leave it went I leave Castlenel.
He was very unkind about Sara, and my arrangements with her. He expects me to have magical powers to know what she has to do when he is in the house for five months in winter.
He wants special arrangements for Frank , we have to use him to taxi us around, we are encouraged to buy him Christmas gifts,and Sophie too,who has nothing to do with La comparsa.
Sara's loyal contribution, week in week out, seems to go unnoticed or criticised.
I have always made sure the boys could always be in the same room with us since the divorce, did not want them to feel awkward, and they do not as far as I understand it. But it has been at a cost to me. Phil treats me badly, a lot. Critical , uses put downs, corrects what I do.
They are big people now, I have to take care of myself and John.
I wonder what gave BP him the idea I am going to do what he demands, or even asks .I have my own views, my own way of doing things. He thinks shouting or sulking will get him what he wants, and sadly all too often, it works for him.
I have not asked for much from La comparsa, Sophie's terrace for my plants, a new bathroom, and a cleaning woman.
I have supported others projects, in the " Spirit of La comparsa" but it has not been appreciated, simply expected.
I really have no use or need of a Pizza oven, would much prefer a stove or money towards the bathroom.But I have been supportive.
When I ask for a few euro for Sara, it causes a rammy! So where is the spirit of la comparsa from BP?
No where in sight, nowhere on the horizon.
The amount of discomfort that this last visit caused me and worse John, has brought me to my limit.
I have a long fuse, but once I reach the end of it. Bas Halas- Finish.
He was upset that Scott told Carmen not he help him anymore.It did not occur to him he needs to pay for their help.Good grief I paid Christina and Scott, 150 euro for their help getting a good dentist and making appointments and taking me there, worth every penny.
If you have a generosity of spirit, by enlarge it makes life happier, oftentimes it comes back to you in unexpected ways.If not ,so what.We do not do it to get things back we do it " just because" it feels good or it is the right thing to do for another person.
If I want something , I just pay for it. Dad's window, which in fact I decided to get because Phil was complaining of the cold. I could have gone to Australia with that money.
I am glad I honoured Dad but even so, I meant well ,that Phil would be warmer in winter.
And I feel good because it looks lovely and everyone benefits.
I got John's room done, which not only benefited La Comparsa, it gave Phil an interest over the winter, and work for local folk.Which is important to me.
We went to Castlenel for John , it was an important week, and BP seemed on the one hand try to be kind to John, and on the other hand, seemed unable to put himself aside and just lighten up.
Certainly with me and especially after Sara asked for more money.
His response the second time I brought up Sara, at the cafe, which I thought would be safer, was very alarming for John, he went so white, and had the flashing lights in his eyes ,he gets them under stress, thankfully he had a good long sleep when we got home, and wakened up feeling a bit better but very tired.
I felt so crushed, I could not have a row, but I felt like it, and still do,as John would have been badly affected by it, and Philip was trying so hard to fix it, to mediate.
And in my experience, BP is basically unreasonable till he gets his own way, or he declares his unhappiness, and everyone is affected by this.TWAS ever thus.
If things go his way he is all sweetness and light.
On this journey that John and I are on, we need plenty of loving family and friends around us, or time in a tranquil atmosphere to be together and enjoy what time we have,,and even then it is a tough road.
We do not need BP and his irrational thinking and behaviour. We need to be much more robust before we can tolerate him in our lives.
We were only home an hour, when Brian emailed to say, I see from facebook that you are working on Saturday, would John like a trip to Dobbies, and he did, and they went off, leaving me to enjoy my afternoon.
Andrew's pictures are wonderful, capture the happy times that we spent there, thank goodness, friends all over the world are enjoying the pictures, and commenting on the happy family , the lovely oven, the great photographer. The photo's help me capture the happy moments at Castlenel, and the memory of the lovely neighbours , and shopkeepers who welcomed us back again.
All shall be well,
and all shall be well
and all manner of things shall be well.
Peace to the North
Peace to the South
Peace to the East
Peace to the West,
Peace be without,
Peace be within,
PEACE PEACE PEACE
.
Tuesday, 7 January 2014
Marie Curie to-day
John was back at Marie Curie to-day, he enjoyed the day, but he came home shattered. Which is fine as he can stay in bed as long as he likes here. I worry about when he goes to London, and we go to Castalla, will he cope with the tiredness of the travelling.
He left his glasses there .I will go and collect them tomorrow.
I have brought a bit of normality back to the house, took, virgin things to a pick up point, took lots of stuff to charity shop.
Tidied drawers, wardrobe, desk, shelves and boxes in the hall. It feels better after the colour and busyness of the festive season.
We are expecting the new printer in the next few days, I set the old one of fire on New years Eve.:-(
I am about to order a blu ray player, still not sure about a mini ipad.
Phone fixed, all I needed was a new charger, so now all my photo's are downloaded, so I am working away on flickr.
I took the touch screen phone to the same shop on Smithdown Road, and he can replace the screen for £25, plus a charger for £5.
All these things being sorted out, make me feel more in control.
We had a leak in the cellar, turned ut to be the washing machine, thankfully Albie fixed it.
Last thing the bathroom cabinet fell of one of it's hook, in the night,Albie will rehang that for us too.Inshalla.
When I am in control,or at least have the perception of being in control, I feel much better.
That is it for now Mr blog.
He left his glasses there .I will go and collect them tomorrow.
I have brought a bit of normality back to the house, took, virgin things to a pick up point, took lots of stuff to charity shop.
Tidied drawers, wardrobe, desk, shelves and boxes in the hall. It feels better after the colour and busyness of the festive season.
We are expecting the new printer in the next few days, I set the old one of fire on New years Eve.:-(
I am about to order a blu ray player, still not sure about a mini ipad.
Phone fixed, all I needed was a new charger, so now all my photo's are downloaded, so I am working away on flickr.
I took the touch screen phone to the same shop on Smithdown Road, and he can replace the screen for £25, plus a charger for £5.
All these things being sorted out, make me feel more in control.
We had a leak in the cellar, turned ut to be the washing machine, thankfully Albie fixed it.
Last thing the bathroom cabinet fell of one of it's hook, in the night,Albie will rehang that for us too.Inshalla.
When I am in control,or at least have the perception of being in control, I feel much better.
That is it for now Mr blog.
Monday, 6 January 2014
A New Year
Mixed Feelings
I felt quite fearful as we approached the new year.Up until now our goals are a few weeks away, things planned were manageable.
New year gives you 365 days to look forward to, I always wonder what the year hold. where will we all be next hogmonay?
This year those questions frightened me. I made a very big effort to make this festive season special for both of us and it has been.
The doctors are happy enough with John's health for now and encouraging John to visit London and Castalla.
January will be busy for us this year with travel and family events.
Other plans are in February a trip to London with the boys, just one night at the theatre but I am really looking forward to spending 24 hours with them, travelling, the play " Twelve Angry Men" after a meal at Joe Allan's, and a night in a hotel, and the Sunday having breakfast and a look around Covent Garden.
In March another weekend with the girls, and maybe John travelling to London Cambridge,that will depend on how this next weekend goes for him.
I am conversely looking forward to all of this and scared it won't happen as John will be too ill or worse.
All the Christmas rituals this year were very poignant and the music too. Traditions are so good for us and they can be quite painful too.
Putting away the decorations I wondered if John will be here next Christmas when I bring them out again.
I wish the doctors had not said a time, because I don't think they know to be honest, a rough idea maybe. It is very hard to live all this time since the summer with this on the horizon.
We know when people get to a certain get that the end is in sight, but it is unknown too.
All the hospital visits, nurses coming and going taking blood, take blood pressure, carers, coming in ,keep in in the front of my mind. I loved the three days off from carers over Christmas.
I have been trying to stave off a cold this season, I feel a bit achy and more tired, and in the morning, I feel congested, but I have not taken to my bed. I can't how would John manage? it s a big responsibility for me.I sometimes worry when I am crossing the road, what would happen if I got knocked down and killed, what would happen to John, who else can stop work and care for him
Even if I was just in hospital, that would cause problems.
Most people who are caring for someone knows it is temporary and that person will recover, or grow up , leave home. In many cares cases this is not the case, the outcome will not be a good one, this is the hard part.
We have had many technical problems this season, new apple tv one control panel for all the equipment DVD player not working, I set fire to the printer, my phone camera has not been working and I have had 300 photo;s in the phone waiting to be downloaded, I miss working with my photo;s on flickr.
At least the phone is working now, so I can get started on the flickr work.
We are getting used to the new TV things. I missed all my Christmas movies this year as the DVD player was not working, still worse things happened in the war, I can see them next year.
The weather here has been relatively good, compared to the rest of Britain, there have been terrible floods,and cold and snow creating it's usual havoc, here and worldwide.
That is all for now Mr Blog, good to be talking to you again.
Peace to the world and peace to us.
I felt quite fearful as we approached the new year.Up until now our goals are a few weeks away, things planned were manageable.
New year gives you 365 days to look forward to, I always wonder what the year hold. where will we all be next hogmonay?
This year those questions frightened me. I made a very big effort to make this festive season special for both of us and it has been.
The doctors are happy enough with John's health for now and encouraging John to visit London and Castalla.
January will be busy for us this year with travel and family events.
Other plans are in February a trip to London with the boys, just one night at the theatre but I am really looking forward to spending 24 hours with them, travelling, the play " Twelve Angry Men" after a meal at Joe Allan's, and a night in a hotel, and the Sunday having breakfast and a look around Covent Garden.
In March another weekend with the girls, and maybe John travelling to London Cambridge,that will depend on how this next weekend goes for him.
I am conversely looking forward to all of this and scared it won't happen as John will be too ill or worse.
All the Christmas rituals this year were very poignant and the music too. Traditions are so good for us and they can be quite painful too.
Putting away the decorations I wondered if John will be here next Christmas when I bring them out again.
I wish the doctors had not said a time, because I don't think they know to be honest, a rough idea maybe. It is very hard to live all this time since the summer with this on the horizon.
We know when people get to a certain get that the end is in sight, but it is unknown too.
All the hospital visits, nurses coming and going taking blood, take blood pressure, carers, coming in ,keep in in the front of my mind. I loved the three days off from carers over Christmas.
I have been trying to stave off a cold this season, I feel a bit achy and more tired, and in the morning, I feel congested, but I have not taken to my bed. I can't how would John manage? it s a big responsibility for me.I sometimes worry when I am crossing the road, what would happen if I got knocked down and killed, what would happen to John, who else can stop work and care for him
Even if I was just in hospital, that would cause problems.
Most people who are caring for someone knows it is temporary and that person will recover, or grow up , leave home. In many cares cases this is not the case, the outcome will not be a good one, this is the hard part.
We have had many technical problems this season, new apple tv one control panel for all the equipment DVD player not working, I set fire to the printer, my phone camera has not been working and I have had 300 photo;s in the phone waiting to be downloaded, I miss working with my photo;s on flickr.
At least the phone is working now, so I can get started on the flickr work.
We are getting used to the new TV things. I missed all my Christmas movies this year as the DVD player was not working, still worse things happened in the war, I can see them next year.
The weather here has been relatively good, compared to the rest of Britain, there have been terrible floods,and cold and snow creating it's usual havoc, here and worldwide.
That is all for now Mr Blog, good to be talking to you again.
Peace to the world and peace to us.
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