Hogmonay 2014

Only three days since John died- feels much longer since I saw him-was with him at that wonderful heartbreaking moment that we shared.

I had the call at about 2 AM to say things had changed with John - I got a cab right away and was with him from about 2.45 till 6.06 when he died very peacefully- it was the first time I had been at a death- I am glad John's was the first.

I sat with him and talked through the story of our life-since the first time we met.All our homes- holidays- work times- times at the theatre and cinema- times with out five much loved children and much more- I held his hand- and watched his breathing go from noisy because of his  chest- to quiet gentle then much shorter breaths- right up to the very last one.

I sat till 6.14 before I got a nurse to come in and check if John was dead- I could feel my own pulse when I put my hand on his chest- but the nurse confirms that he was dead- and she kissed him-which I thought was beautiful.

The staff eventually had to come in and lie John down- I went for a hot chocolate-something that I have grown to like since I have been visiting John at the hospice- that and mocha latte.

When I went back in - it was not John any more.In that short time- after the beautiful intimacy of the previous four hours- it felt a bit stark.

I spoke to the nurse and she told me what to expect would happen next- about doctors certificates and death certificates- the morning staff came on - nurses hugged me said lovely things about nursing John. I spoke to Johnny and Andrew- then I walked on the White icy road along the familiar route to the bus stop- it was about 8.00AM- only to discover that the morning buses did not start up till about 9.00 AM- I walked back carefully to the hospice and rang a cab.

I started to call folk and folk called me. I can't remember too much I must have been in a trance but it did not feel like I was at the time.

Andrew and Philip came as soon as they could from Kennilworth and from Salford- Andrew collected Philip and they came together-which was lovely and comforting.

We caught up -Andrew emailed work and took the next day off- in order to help with things you have to do- Philip and I went to get a few bits from Tesco and we met Beth on the way- and had hugs.

We arrived back -same time as Andrew who had nipped back home to get some food stuff.

Andrew cooked- we talked to family and friends- ( the boys did) we drank wine- we talked about John- Lucy came in - we talked more drank more-it felt cosy and safe.

In the morning reality hit me- it was real John was dead- folk had put beautiful pictures of him on facebook- emails came in- texts came in -all beautiful and heart warming.We gathered here again- and went to Marie Curie to collect John's death certificate and his things- I felt sad going there- thought I should be seeing John here- I have been coming for three months to see him-another hard reality.
The staff were as ever wonderful - talked me through everything I would need to do- gave me hugs and more hugs-we collected John things- it was a bit of a shock as his room was no longer his room- it was bare- and the cleaners were in-John had gone- more reality.

As we left two of the doctors Clare and Dan came to say how much they had enjoyed caring for John - what an interesting man he was- and gave me big hugs.
Also said I can go in any time to chat- talk- sit in the chapel.

After that the boys and I went to the Woolton Crematorium - just to drive round- it was peaceful and comforting somehow.

WE went to Lark Lane- moon and pea for lunch and more chat- it was a good experience- the sun shining helped a lot.

We came back to Ullet Road- made some more calls to keep Johnny and Andy informed about what we were up to- then we watched a West Wing- Andrew took Philip to Lime Street- and went home himself.

I had some time to myself- I pottered- got the tree ready for new year- and the house. a lot of the red Christmas stuff has been put further back now- just white lights on the tree- silver and sparkly decorations- to the front- Santa's and reindeer's to the back-there is more of a winter theme around- which I like. I might have a last hurrah for Christmas on 12th night- John and I did- but not sure this year.

Yesterday Andrew collected me at 8.30 am and we went to register John's death- Nicky the young woman who looked after us was very sensitive-talked us through everything we needed to know-in a gentle understandable way.

Andrew noticed that above us on the wall of the little office there was a picture of Winnie the pooh and piglet...it made me happy- felt John was looking over us.


Andrew and I had a coffee at St Georges Hall and made some more calls- and felt pleased that we had ticked one more box. Then to Bold Street- where we put some things into OXFAM- then went to Utility looking for a frame-we did not find on there but we did find one in Rennie's- and I left my " giant Grannie" to be framed - to be collected on January 10th- the day after John's funeral.

Then we bought bread at East Avenue Bakery and home for our meeting with Andy the funeral director- he was great- got me to sign a few things- and he will do the rest of the work.

Andrew was a tower of strength- I am so grateful to him- especially as John's children cannot come for now- bless them all- they have all done so much in there own way.

He went off to work- I had a wonderful walk in the park- saw my swans- it was peaceful although there are a lot of folk around- as it is the holidays.

I then did an Asda shopping- then had a bath -some pasta and some chocolate icecream.

Today Hogmonay-was hard as I was waiting for the hospice to collect John's bed- bath chair commode and zimmer frame...it has all gone now- that was hard- I cried a lot- but it is done now- and I have the fold up bed made up for Philip's tonight.

I talked to Sandra and that helped me calm down a bit- Now for a bath a walk- a siesta- then a concert tonight with my boys and Lucy-- that will be good-"the bells" not so much.

All shall be well
and all shall be well
and all manner of things shall be well......and so it is.....

December 28th 2014

To-day my beloved husband died.

St Steven's Day 2014

Hello blog

we got through Christmas eve and Christmas day it has been so hard- so emotional-so beautiful- heartbreaking and life enhancing.

John sleeps mostly with an occasional wakeful moment- sometimes totally with us sometimes in another place trying to communicate from his place to our place.

This week Johnny and Penny spent time with John came all the way from Cambridge and London.

John came twice and on his last day before Christmas he brought a tiny tree- mini champagne- mini malt whiskies mince pies and gifts for both of us. Pyjamas for John a beautiful shawl for me.

Liz called in that day and we had some reminiscing some songs some laughter ad tears.

John and I played A fond kiss to John and we both cried- Johnny did not know that this Robert Burns song was James Lightbody's favourite song and John always thinks of him when he hear it- as it happens Johnny thinks of his dad when he hear it too- so it was very emotional.. for me too as I chose it as one of my desert island discs-for my Scottish family- my grandfather loved it. All those connections to on song.

One Christmas eve an old friend, Liz, and I decorated this tree with tiny baubles - I brought in the radio and we played Classic FM which was mostly Christmas songs.

I felt sad leaving John on Christmas eve...it is a sad time with out the one you love with you- I had a bath and an early night- but did not sleep too well.

Christmas morning was strange too..I opened a few gifts and a cab came for me at 11 AM -- John was asleep but I was happy to be with his for the few hours before my sons and Lucy and my son's dad came to visit with John- John stirred a little but was a bit confused- but did like on gift- a coaster with a picture of his Lightbody clock face on it- one of a set of coaster from Philip- he went back to sleep holding it,

We left John and came back here for a few hours and exchanged gifts and drank tea ( me and Andrew who was driving) wine everyone else.

I was quite overwhelmed by the gifts that I received- from everyone- people were so so generous.

I have felt so loved and so supported by Andrew Philip and Lucy- they all love John too- we are blessed with our families. Penny Johnny and David and partners have been amazing too- been here as much as they possibly could be and been very loving to me.

I went back to Marie Curie and the boys and co went back to Manchester for a late Christmas dinner.

John slept and some friends Anita and Philip came for a little visit- which was lovely.

I came home about 8.00 Pm leaving John peaceful and asleep. I had a bath and some toast and smoked salmon-and some polish cake- my Christmas dinner--which I enjoyed.

Enjoyed looking at my gifts once more- so so lovely and thoughtful every one.


Then bed....I wakened up to-day -boxing day- quite refreshed and glad that those few days were done-we got through them-well done all of us- especially John.
John rang this morning to say he had made a mistake and that there are no trains running today so he will not be here until tomorrow- the forecast is for heavy snow- so taking the car is bot a good idea.I am glad he can spend some more time with his own family.

So dear blog that is it for now- lets see what to-day will bring us. Onwards and upwards.

Johnny back again ! Jamie won masterchef!

Yesterday we had a very emotional day .

John was moved to a room on his own a few days ago-and the staff said maybe Johnny and Penny should come yesterday instead of to-day. They did come and it was very special - John rallied a bit and said some things he felt he needed to say -including that he knew the end was near- that although he was in favour of life -he accepted the inevitable ( paraphrasing) he said much more -it feels to personal for the blog- because some of it was to Penny and Johnny and not for me to share. But as you would imagine- it was great stuff with the inevitable humour there too,

John is very special . I don't say this because of how I feel about him- the reaction of so many folk highlights this to me. Family ,friends ,but also the staff at Marie Curie and the other hospitals that he has been in. He is much loved and admired by those who have only known him in his illness.

Penny left yesterday aware that it might be the last time she saw her beloved dad.So so sad.

Johnny went back to London but decided that is would come back today. It was so emotional- Andrew and Lucy came to visit John and to take me home- John rallied a bit for them which was special.

I came home last night- had a bath and was asleep just after 9,00 PM what a day.

Today Johnny and I met at the hospice- John was very different- slept most of the day mostly peaceful- thank god. Johnny brought a mini tree two mini cava's and three mini malts -some mince pies-and our Christmas gifts,What a lad.Andrew came in while Johnny was there and they shared a miniature malt together and raised a glass to John - so many special moments- Lucy called in too and Liz...all special- how often can you say that without it losing its meaning? I do not know- but in truth we have had so many special moments.

I left John is wonderful hands ,the staff who are like family to us now- they will call me if any thing changes- all being well I will have a good nights sleep.

Thank god for John and 27 years of marriage- I am truly grateful for every day- even the tough ones.

I was home in time for the final of Masterchef- Jamie my guy from the start- won - a happy moment- in a sad time. Robert sent a long email- saying "have a glass of wine" which I duly did with masterchef- then he sent a picture of Gwynneth with her tree- she does not change.

All shall be well
and all shall be well
and all manner of things shall be well.......

Christmas music and tears

I am finding this season so hard as time goes on- being taken unaware by Christmas music which brings me to tears-I miss John being here joining in the preparations- also slowing me down- 'sit down woman ' a cup of tea- or a glass of wine.

My friends, children and family are FANTASTIC very supportive to me and to John- yet it is a lonely road at times.

All shall be well
and all shall be well
and all manner of things shall be well......

Sweet peas

Last night I went to the hospice with Andrew and Lucy-they have been working on a secret project with John- I thought it might be a poem that John had written for the staff at various hospitals -but it was a framed picture for me -  of the sweet peas that we grew together over the summer- they were not very successful to be honest- but I managed to pick a few from time to time and put them in a glass in the bedroom where John could see them from the bed.
I remember that he drew a picture of them one day in August-the month before he went in to Marie Curie.
He must have had it among the papers that he took to Marie Curie because that is what he gave me last night a framed picture of the sweet peas.

I am so grateful that  Andrew and Lucy were able to make this happen for John, I feel very emotional about this gift.It means a lot to me.

He got some prints done so I will help him send then off  the children and anyone else he would like to send a copy to.

I am deeply moved and touched !

sad times- with happy moments

The last few days John has not been too well at all- a bit confused- high temperature-I just sit with him- knit- hold his hand- go for machine tea.

He wakened up the other day- said " I am having a good time" then went back to sleep-he can still make me laugh.

Yesterday he made me cry- he was in pain while I was there- and the staff were working hard to get him comfortable- I felt very sad and helpless.

I told him I know he is tired had been through a heroic struggle and had probably had enough.

he said " that was wisdom" and yes he had had enough- I told him if he had to go- it was OK with me- that I understood and that I would be OK.I wanted to say' that 'because I always regretted not saying it to my Grandfather-- when he said he wanted to go- I said no- no-stay for your 90th birthday- but he was tired had had enough he wanted to be with "his Mary" I wish I had known to say Ok go in peace.

David is coming tomorrow from Hong Kong- he has not seen his dad since January- mainly because he has a new job in HK but also because Maureen his mum died in March so, early in the year he used up his holidays coming to see her and going to her funeral.


I have been making sure John is not too stimulated this weekend- I have been the only visitor- as he does not need to make an effort with me.

I am hoping he will have some energy for David- if only 10 minutes-a bit of quality time.

Johnny and Penny will meet him in London-and they will all travel by train from London to Liverpool- they should be at the hospice at 12 45. I will go at noon- and be there for the arrival- so we can all be together John his three children and me- then I will leave the three children with their dad- then Penny and Johnny will leave to go back to London- leaving David with his pa.

David will come here tomorrow night- I asked if he needs space or family with him- he would like Andrew Lucy Philip and I to have dinner with him- so that is what is happening.

Tuesday David will see John again- then leave his pa for the last time and travel to London then Hong Kong- poor David- such a difficult moment that will be.

Philip is staying over with me on Monday night- so we are both here if David needs us - to be with him at the hospice- after he leaves- or meet him at Lime Street for a coffee before he gets on the train or let him just slip away on his own.

A young friend picked me up from the hospice to-day and took me to Dobbies- where we had tea and cakes and I bought a Ponsietta - it was nice to be in a different space for a wee while.

So dear blog- that is all for now. time for a hot bath and some food.

my health -today

Hello blog

I finally saw a good doctor to-day- Dr Pauline Pang.

She listened to me and took me seriously- I went straight from her to have a whole battery of blood tests done- tomorrow I will take a ( s) sample to the surgery-and within a few days I will go for an internal examination.

I am very grateful to her - yet her response gave me a fright. She says I should not have had diarrhoea all this time- so she is getting all the tests done to eliminate a lot of things- I go back on December 10th so I need to be patient now. She has booked me in for a double appointment.

I am completely shattered worn out and had enough-I wonder how long can I go on with life as it is now- completely suspended- waiting.

Johnny has been three time over the last week- one of the days we met with a humanist celebrant and a funeral director- very strange thing to do but as the family are so far flung- we need something in place for when the time comes.
The celebrant Bill Dawson is lovely sensitive kind and a good listener.The funeral director was awful- talked at  for 20 minutes- no listening at all- wanted to show us pictures of coffins with no sensitivity at all-also talked about the recent funeral of a six month old baby- all totally wrong and makes us wonder how he keeps going- even looked scary all in black- he gave both Johnny and I the creeps.

Johnny and I then went to the hospice and John was not too good- the hits just keep on coming some days.  I stayed a while then left Johnny to have some quality time with his dad.

Penny came on Saturday and spent the day with John ,and I went to the Christmas Market in Manchester with Philip-it was so nice to get away from Liverpool ,Ullet Road and Marie Curie.

I stayed over night with Philip and really enjoyed the evening meal, a glass of wine and a movie.

On Sunday morning I got a call to say John was not doing well- I felt awful that I was so far away- and guilty I had been having a nice few hours.


I got back to Liverpool and John was much weaker- had a temperature- and had a drip in.

I think it was mainly a reaction to the excitement of Penny's visit- but I know John  would rather see people and pay price later because he told me that.


So it has been a tough time-  the nice moments and short and the tough ones are long and I fear for my own health physical and mental too at times.

I have not been to see John to-day. Sarah went late morning and Kev went this afternoon- Andrew and Lucy might go this evening.

I really believe the hospital visits-- just being in that environment are getting to me-making me ill-it has been going on for such a long time-since 24th September -this year- and last year- three month of three hospitals - two years of hospital out patient visits- after this I hope I never have to see another hospital again EVER.

Now I wonder what is wrong with me- hopefully on 10/12 I will know what I have to know.

Somehow I have to keep going- getting out for my walks again- I miss my walks.

All shall be well
and all shall be well
and all manner of things shall be well.

Terror to Calm - 13/11/14

Dear Blog

to-day I went to a meeting at Marie Curie with Andrew and Johnny- a meeting with the health care team who care for John.

I was not sure what to expect- felt quite nervous- in fact for the last few days have had terrible diarrhoea- which has left me shattered and very low physically and emotionally. I think this condition is closely connected with fear- and fear is around- fear about John- for me -for all the children for all who love John.

He has become much weaker- much less able to do things for himself. More confused.

The meeting was life enhancing- such a caring capable knowledgeable team who all have great regard for John some love him I would say.

I was put at ease very quickly the meeting was in one of the quiet rooms- not a conference room- we were all asked how we felt what were our thoughts our questions.

Gradually with great skill we were brought to realise that John is very unlikely to come home- I am glad to know John is happy in Marie Curie in fact has told me several times over the last 18 months that -that is where he would like to die.

He may have a few weeks or a few months - he is much weaker and needs intensive care now.

I simply could not manage to care for John here ,even with carers coming and going.

We were all surrounded with such love such support - and we cared a lot for each other too once the staff left and ended up with a group hug- I left the room feeling quite calm.

Quite a transformation form when I arrived.

John said a few things to me in the last 24 hours which helped me see he knows at some level that the end his near. One was that he wanted to go to Lynda McCartney this morning to shake Dr Hussein 's hand-the doctor who has been with him monthly since the beginning of this. I was very grateful to Marie Curie that they organised an ambulance and staff to take him there-what stars they are.John wanted to say his good-bye.Johnny was there with John he has been a constant in all this time-been to so many appointments at The Royal-Clatterbridge- and of course Marie Curie

 John said that he knew when it was time to give up the fight- and be peaceful -and that time was now. I am full of admiration that he was able to recognise this and grateful that he has lived long enough to have reached this stage.
 I think it is a blessing.
 Andrew asked what we could expect now -what changes might we see in John.I am happy to say dear blog- John will feel more tired,sleep more, eat less, and then the last day will come there will be no distress -what more can we ask for John.

I feel at peace for now-I can see a way forward from here- to be peaceful with John ,let him know I am ok I will be ok -all shall be well-and all shall be well - and all manner of things shall be well.

Grateful thanks to all who helped John and I to reach this place - for tonight at least- and tonight is all we have.

November 2nd- sunshine to-day- reflecting on the last few days.

We had a lovely day with John yesterday- Philip and I - John was in great form drank some wine with Philip had some bread and cheese with olive oil.Started a crossword-all good stuff- I think we all felt uplifted. Friday I spent the afternoon with John it was out 27th wedding anniversary- we looked at our wedding photos as did some nurses-celebrated with tea and blue riband biscuits.

I really enjoyed celebrating our anniversary and Halloween-with the children - they brought us lovely thoughtful gifts from Hong Kong - I especially like the serene Buddha and the golden cat- between them they will bring us prosperity- serenity and happiness.
Philip brought Lillies and sparkly- I bought scary masks- and put lovely Halloween decorations around the place. Looked great. I enjoyed the food and the wine- the medicine is kicking in and I am feeling a lot better.

So to-day was a shock- John was very lost and distressed when I got there. We had a big hug then I rang for a nurse to help John in the end they needed there people to help John get to the loo- then he was shattered and just slept for a good hour.
They were worried about him and called the doctor- she was very kind- Clare her name is.

They have started John on an antibiotic- maybe the chest infection is causing his sleepiness- maybe not- the next 48hours will help them decide what is going on.

I felt very upset when John was upset- but mostly I sat peacefully with John hoping to be a benign influence on him.

I left- and John was quite peaceful although it took me an hour to get him prepared for me leaving.

I am home now- spoke to Andrew-shared some of my tension I think all the tears are a combination of grief and the relief of tension after being in the hospice for a long afternoon.

I am about to have a hot candlelit fairy light lit bath.

Tomorrow is another day !

All shall be well
and all shall be well
and all manner of things shall be well.

Bless my circumstances as they are now.
Bless my family tonight
Bless John tonight
Blessing on my home and my family tonight.

Sisters - - ups and downs -nest of tables- swans in the park.

Hello blog.

sad to say I still feel drained tired below par.
I wonder how I will deal with either constant visits to Marie Curie or caring for John constantly when he gets home.

I felt quite ill when I came home from hospital yesterday-all the folk in John's ward-so ill- all the coughing and spluttering - crying out- bed wetting.I don't know how John copes- he seems very passive about it all- I guess after a month back in there -it has become his life now.
I cannot imagine keeping up the standard of care and the endless meals and snacks.

I feel quite desperate sometimes- trapped- with out a choice- I have to do this- till death us do part.

I feel in the midst of grief for the life we once had- which is long gone-yet in that state I need to adjust to the ever changing situation with John's condition and his needs.

My inner child feels sad- lost- uncared for - no fun in her life.Somehow I need to keep going-but I feel myself going down hill- I have lost weight- and look very pale.

John might get home this week- I think if I knew for sure I would feel more in control- I would have to face putting the chair lift in the bath and maybe the commode in the bath room.I hate all this stuff- just makes me feel queasy.

I loved my sisters visit - we chatted and ate a little ( in my case) and drank some wine. It did me good we shed a few tears and had some laughter- it was hard to see them go yesterday at Lime Street.

Jackie put a nest of tables together for me- she has such patience and that kind of mind I am very grateful.

I might get the coffee table to match- maybe Andrew could put it together for me.

I want to get the couch from IKEA the one that comes into a bed- that will give me a choice when John is home- I will need that.

Getting the energy together to do all this is the next challenge- I seem to be running out of steam now.

I enjoyed a walk in the park yesterday- went straight from the hospital to try to shake off the gestalt of that place.Nature helps- the late autumn colours- the ducks-geese-swans -cygnets- squirrels.

I watched the end of the fourth series of The Good Wife I really enjoy that programme- I have been going to Chicago every night - another world.

All shall be well
and all shall be well
and all manner of things shall be well....................and so it is.

Lightening and amazing news on Radio to-day

Today John sent a text from Marie Curie to say he had seen a flash of lightening- I said I would watch out for it here in Ullet Road.We wakened up to howling gales and rain this morning I heard on the radio that it is the tail  end of a hurricane somewhere out there over the sea.

I am expecting a parcel delivery from Cornwall to-day  organised by our dear nephew Robert-I am so touched by this. I hope it comes before I have to go out to the hospital.If not I am sure they will come again or leave a card.

We got the news last week from Dr Edrington that John cannot have anymore treatment,they don't think it will help- so back to Marie Curie to help with pain relief

In the first 24 hours I was in denial I thought I was well able for this news- I went to Manchester on Friday night and saw my son Philip in a vintage clothes fashion show- and it was fun.

By Saturday night I had severe pains in my stomach- really bad- there was nothing I could do but wait for it to pass I stayed in bed for 36 hours- and dozed in between  the pains.

I have been sipping hot water unable to face anything else- this morning I have just has a cup of tea and toast and so far it has stayed down and no shooting pains- I feel quite high like I have been drinking wine-a cup of tea does that if you have not had one for a while.

I have to buy more pyjamas for John -he seems to go through so many-I have to bring them home from the hospital and wash them and take them back- no matter how many he has he seems to need more- and of course some go astray- I get different tops and bottoms back from the hospital-same last year when he was in- he has lots of unmatched tops and bottoms

Andrew and Lucy are home - thank goodness to have them close again.

Liz as ever has been a great help- helping me with so many things and helping John out too.

I am receiving replies to the invitation to The Celebration of The Metaphorical Toolbox-I hope I am up for it at the time -27th November- surely I will feel well again by then.

My sisters are coming on Friday till Sunday :-) really looking forward to that- even if I can't eat too much or drink some wine- I will love their company.

What am I grateful for-

I am grateful for Dr Raison ( maybe that is his name) he has been working since early 1970s -trying to find out how to help folk who are paralysed to walk again- give them hope- and he has done it ONE man is now walking with and aid has feeling in all his limbs and can drive a car- hallelujah

So there is hope for everyone else in this position now- and hope is everything.

I am grateful for my family
I am grateful for Andrea
I am grateful for a gift coming from Cornwall today
I am grateful for a cup of tea and toast................................................thank you.................

The little colon book !

I have been feeling very fragile this last few days- John has been in hospital since two weeks today.

Since he went in it has been a roller coaster of business and emotions for me.

Birthday weekend was fantastic- my boys and Lucy organised a great weekend for me with them and the Matthew Collins family.

I felt the loss when they all left- but it was much worse when Andrew and Lucy left for their three week holiday-they are my close family support and have been through out everything.

Quite quickly Phil started work on the bathroom so he was coming in every day and it is what I want but it was  still an upheaval for me.

I ordered the dishwasher which comes on Friday and with good luck Phil will be here to fit it-then it is done !

I got the mirror and shower curtain they are up now - look great we have a few more things to get but it can take time now.

I cancelled a few sessions- but I did have a long three hour meeting in Fact with M & M about plans for the Toolbox. They are great young woman and I appreciate there love and support as well as their ideas and energy.

John is very up and down -he has had an injection yesterday to help with the pain ;lets hope it works well until the appointment with Dr Edrington.

I am easily in tears and feel quite fragile- things that I usually take in my stride and breaking me up- the boiler was not working this morning and I felt devastated -under the circumstances it seems a bit over the top- but it is not the central heating it is everything building up.I do worry more about John this time -don't know why it feels much harder than last year.

I am on top of Christmas shopping and have ordered a new pair of boots and shoes for me- all Autum winter clothes now hanging in wardrobe-  and summer things packed away- I think I am finding things to do to take my mind off the uncertainty of our  reality .

I have made five Christmas cakes and a tray of my Christmas chocolates-

I have had sever pains in my stomach and gut-can't eat much- and can only sip water and tea.

Happily when I went to see Beth to-day she had just come back from a course all about the colon.

So there and then she gave me the new treatment- it was painful at times but hopefully will be worth it.The treatment also made me feel a bit more grounded.


Tony , Philip's friend, came today to collect the couches-so happily, the cellar is cleared of his things and the lounge feels much bigger -Tony asked after John and told me he had lost his mother to cancer-poor young man- lovely though.


All shall be well

and all shall be well

and all manner of things shall be well.......................and so it is.

For my pa !

KAPTAIN'S BLOG

THE WRITINGS AND MUSINGS OF THE KAPTAIN

SATURDAY, JUNE 20, 2009

SO MANY DIFFERENT LENGTHS OF TIME, BY BRIAN PATTEN

For my late Dad, on Father’s day.

How long does a man live after all?
A thousand days or only one?
One week or a few centuries?
How long does a man spend living or dying?
And what do we mean when we say: “Gone forever”?

Adrift in such preoccupations, we seek clarification.
We can go to the philosophers
But they will weary of our questions
We can go to the priests and the rabbis
But they might be too busy with administrations.

So, how long does a man live after all?
And how much does he live while he lives?
We fret and ask so many questions -
Then when it comes to us
The answer is so simple, after all.

A man lives for as long as we carry him inside us
For as long as we carry the harvest of his dreams -
For as long as we ourselves live,
Holding memories in common, a man lives.

His lover will carry his man’s scent, his touch:
His children will carry the weight of his love
One friend will carry his arguments
Another will hum his favourite tunes
Another will still share his terrors.

And the days will pass with baffled faces
Then the weeks, then the months
Then there will be a day when no question is asked
And the knots of grief will loosen in the stomach
And the puffed faces will calm.

And on that day he will not have ceased
But will have ceased to be separated by death.

How long does a man live after all?
A man lives so many different lengths of time.

for John !

"For You"

Just to look in your eyes again, just to lay in your arms.
Just to be the first one always there for you.
Just to live in your laughter, just to sing in your heart.
Just to be every one of your dreams come true.
Just to sit by your window, just to touch in the night. Just to offer a prayer each day for you.
Just to long for your kisses, just to dream of your sighs.
Just to know that I'd give my life for you.
For you, all the rest of my life, for you, all the rest of my life, for you alone, only for you.

Just to wake up each morning, just to have you by my side.
Just to know that you're never really far away.
Just a reason for living, just to say I adore. Just to know that you're here in my heart to stay.
For you, all the rest of my life, for you, all the rest of my life, for you alone, only for you.
Just the words of a love song, just the beat of my heart.
Just the pledge of my life, my love, for you.

September "our month" we love September.

John is now in Marie Curie dear blog.


I have mixed feelings-grateful for the rest-grateful he is there and getting great care.

Sad when I look at his bed- his bath chair-his "things"

The weekend was a roller coaster of feelings- John being admitted on Thursday- my birthday celebrations on Friday ,so many family here to support me and have fun with me.

Rachel and Adam moving- Andrew and Lucy off to Hong Kong- I felt alone when they all left,alone and sad. But now I have adjusted to the new situation and feel quite content- cancelled work tomorrow in Chester I need time to get my head round what is going on-then I will be able to focus on work.

All shall be well
and all shall be well
and all manner of things shall be well ...........and so it is.

all you need is love ?

Hello blog,

'all you need is love'

sometime you need a bit more-love we have .

We need better pain relief- family living closer-a bigger house reliable care........................................

As I type I can smell the aroma from the Christmas cake which is still in the oven.


I find that a re-assuring smell.I love baking at this time of year - it feels right-like making soup-going to the pictures- autumn leaves..........................................................

Tomorrow we go to the Marie Curie to see if John can have a new pain relief regime for the next month-till the chemo starts.If indeed it does start in one months time.

I am hoping for palliative care to be offered as another option.

I feel anxious about being able to take care of John if he is unwell while he is on chemo.

John knows this and knows that I will be asking questions tomorrow about where I am in all this.

We have also talked about what John would like at his funeral service and about where his ashes have to be scattered.Not an easy conversation but we both feel better talking about it.


There is a house meeting tonight- but I will not go -or maybe for half an hour- it is mainly about Rachel and Adam handing over the "books" to Ben and Erangi.

I think I will learn enough from the minutes,

I am grateful that Andrew fixed up the TV and the DVD player . I am enjoying The Good Wife- I have so many options for entertainment now.Lots of DVDs from last Christmas-and films on Netflix- I like a few things on TV. Only Connect- University Challenge- New Tricks-Bake Off.

I loved 'The Village' a few things but not a lot these days-Mostly I listen to Radio 4 Radio 3 and read my Kindle which I love.


All shall be well
and all shall be well
and all manner of things shall be well................................and so it is.

laughter and tears and happy news

This long journey of John's is taking it's toll on me I have to confess dear blog.

I am finding it more difficult to cope with him being an invalid - I long for time alone-in the house- I enjoyed that when he used to go to London and Cambridge.

I consider booking into Malmaison sometimes; and have lots of baths- lovely bedroom and a bottle of wine with a few movies.

It might help- but it means someone else coming to be with John- folk say they will come.

I think John is calmer when I am around-that is the thing dear blog.

I think he is getting more ill-less able to cope with day to day things- hardly feels like getting up to the loo.He might well need a wheelchair tomorrow at the hospital- if he is able to go- the carer will be able to get one I am sure.

I am suffering form IBS which comes and goes but this time it has been quite bad for over a week- it is not easy to treat I know- and I fake it a bit- I look look ok- can do most things- but when I eat or drink a cuppa in some cases- the shooting pains in my stomach are quite severe-I know it is all related to the strain I am living under.

I so wanted to be a patient nurse for John- but it has been two years since he got ill and before that due to age he has needed more care. I am not able to keep this up, certainly not at the level I did in the beginning)  sometimes I feel I am coming apart at the seams.Then I feel guilty when I do things for myself- not always -but sometimes.

I look forward sometimes- to John's end his death- my future without John- it can be frightening- but it is also quite exciting- what will life be like for me without John.

I already miss the John I married and loved for all those years- our relationship- working together-being together- holidays together- ordinary things- going for a coffee- a night at the cinema theatre- John cooking- making a cuppa pouring me a glass of wine-making me laugh.

We have had a good live and an exceptional relationship and marriage.I miss that already.

I will miss John - but not life as it is now. I don't think I will miss that.Although Susan thinks I might-because death is final you can't have the person back even for a minute- and maybe a minute of this life will seem like a treasured time when it is gone.

I still miss my dear pa-often and feel the loss deeply .I heard "flower of Scotland "being played the other day and just cried and cried , for dad, for Scotland. for John for all the good times.

I am making plans-for The Metaphorical Toolbox -for my own creativity- for breaks with the girls and breaks with the boys. I go for coffee and tea and lunch....but sometimes I just go through the motions- because I know I must put one foot in front of the other- breath in -breath out-but it might be easier to curl up in a ball- hide- bolt the door switch off the phones- stop all the clocks.,

Dear blog I know this is not forever- I know it will end--but I feel out of control-as does John at times- we talk about the end we talk about how we feel-- but by now - it has all been said.

All shall be well
and all shall be well
and all manner of things shall be well......and so it is.

Happy news- my dear sister Sandra is coming on Friday :-)

Gloom and sunshine

This week has been very hard emotionally and physically- my arms continue to feel very sore , I have had chiropractic treatment and three out of six massages- and I know I am progressing slowly.
I feel frustrated because I can't do all the things I want to to-especially in the garden, moving pots re potting plants. I have to change John's bed more often and on a bad day that is sore on my arms.Lots of things are difficult,  John has not been great, he has more pain, and the new medication while helpful, makes him so tired, and I am not sure the treatment for the side effects of the medication is helping just yet.

I feel quite down about it all- I don't know if this is the beginning of the end, it might be.This last two years has taken it's toll on me. I can see it in my face sometimes.

I am fighting tears a lot when I look at John dosing in bed, or fast asleep. He looks so pale sometimes  and I catch glimpses of what he looked like when he was in hospital.

I am having some counselling, but sometimes I feel like I either need more, or I need to stop playing the glad game, be more upfront about how I am feeling with family and friends. This is more difficult here as I am constantly being careful what I say on the phone or when folk are here because in such a small place John might hear me.

I have been working on a new regime for myself, and for the first three days in August i did all the things I wanted to do for my writing and my creativity- but then John's needs took priority- plus household things- and it can get me down.

I had to cancel my coffee with Pete the other day- at the Tate I was looking forward to getting to the Tate, and maybe a ferry on the Mersey.

I hope to get to London on Tuesday all being well, been looking forward to that too.

I need to get out the house, sometimes get away from it all. Although the house is looking well, the bedroom make over and the garden has been a huge success.

I was so looking forward to John and I going to Glasgow, and I always love spending time with Matthew and Marie, they are disappointed too.

Hopefully they will come here but of course that puts the entertaining back on my shoulders, and this little apartment, something I do enjoy a lot, but variety is the spice of life..

Dear blog I do like to share with you, but to be honest I preferred talking to my pa- I wonder if it would be a step back to talking to him again.


Hope I feel more light hearted tomorrow - inshalla!

wooden spoons and over gloves

Hello Blog

I am beginning to feel the benefit of being here in Castlenel. It has taken this much time for me to relax.

I have been amazed at John's progress since we have been here, he goes up and down the stairs quite normally now, on the days he feels like getting up.We have been out for coffee and tostada a few times and John admits he did not imagine he would ever do that again.

We went out for a glass of wine a few evening when Sandra was here which he really enjoyed, we all did.

I have been drinking sparkly water rather than wine, due to the heat, which really takes it out of me.I was told by my doctor in Ireland, that with my under active thyroid, hot weather would be a trial, and sometimes it is. But there are way to help yourself, staying in the cool house, drinking plenty water.All in all it is ok.

To day is a pain free day for my, my arms are good and my foot-happy day indeed.

I went with Cristina to see the dentist about my gum shield, which will hopefully help with some of this. It is amazing how important our teeth are to our general health.I go back on Monday at 5 with Cristina to pick it up and have a scale and clean. Total cost 350-less 50 discount :-) and 75 euro for Cristina.
I have been badly let down by anyvan.co they have still not collected the bed base from Ullet Road or delivered the stuff which is already in Murcia. Today John managed to contact them and they say it will all be fixed by early July.thankfully Philip will be here that week.

I hoped to be here to arrange where things go - I think the screen will be good in the bathroom, the fan in LaGalleria and the bed on Seoidin and the double bed up to El Garret, twin beds to the SPTDV till be decide what to do with them

Happily Frank has just turned up with the persiana. so with luck it will be up before we leave which is a bonus.
Hopefully he will fix the flushing problem in Sophie's terrace loo :-) repair the light and then all shall be well.

We bought some wooden spoons and over gloves to-day small things add the the fresh feeling on the kitchen, i bought tea towels and glasses the other day, and I oiled the big wooden salad bowl and the black wooden bowl we use for nuts, once used for gunpowder.

I feel things are quite normal now, here. John has had baths without a chair he moves around with more ease.I guess the big space helps a lot. It makes going back to reality much tougher, hospital the first week we are home , hospital bed which we must have in order for the nurses to visit. Health visitors coming and going.

Still enjoy the moment AND things to look forward to back home, new door new fence, damp proofing done and the window sills treated. Just have to see if i can stretch the budget to a lean to, that will be amazing.

Have to save for a new boiler because that will go in the next year I think, could be £1800, and save for the F word.

I will have much less to live on in the future- and I do worry sometimes, but for now I am staying focused in the NOW as much as possible.

So my philosophy for to-day is wooden spoons and oven gloves matter.

As do our 7.00 Pm readings at the May 22nd club-and the game of wild card rummy we are playing.


All shall be well
and all shall be well
and all manner of things shall be well......incredible meditation!

Calmer today

I feel much better today. As I type I am enjoying the aroma of my Madeira Cake ( one of dad's favourite cakes) I enjoyed The Wind Rises a beautifully illustrated film. Brave and touching.

I brought some Cava home after the cinema, on a school night too, I really felt I needed a lift, I was so down the last wee while. I have not had a glass of cava since Lucy's birthday.It was good we had a good long chat as we drank it and that was much needed we both felt the better of it, the chat and the cava.

I had a facial with Beth yesterday, pure indulgence, it did me the world of good.
I really loved meeting Lachlan last weekend, he is a little sweetheart, very contented wee soul.

The whole family love him and it is lovely to see Geoff enjoying him too.

Great as always to be with my sisters, always fun to be together. Harry was in good form to which makes a difference to our enjoyment .

Sandra and I went to Lambhill to visit Mum's grave, at least where her ashes are, some of pa's too, he is everywhere :-)

I bought red and dusky pink roses and Sandra and I filled up the flower container at the grave, then we had a wee moment of silence , thinking our own thought of both parents.

Then we went back for my case said goodbye to Harry Fallon and Scott.We got the train to central and had tea and scones in the champagne lounge at The Central Hotel.

We were quite happy saying goodbye as we realised that four weeks that Sunday we would both be sitting on the balcony in castlenel.

Phil had some trouble with his credit card and asked me to post on his new one to a friend who is visiting him at the boat, he gave the bank this address. I have done that. We are cautiously warming up a bit towards each other.
We might go the visit with him in July, Sandra would like to come with us,I hope she does.

Jackie and all the family are going to Toulouse for a week on July 12th.

John looks much better today, he got dressed and we went out for breakfast at Fact this morning, and John had his beard trimmed in Andrew's hairdressers.he enjoys that.

I pottered in Rennie's, which I love too,it was a pleasant morning, and we came home to a lovely clean house.

I have been getting lovely emails from the Inner Child participants.It makes me feel good to know my work makes a difference in people's life.

It is a beautiful day today very warm , people seem happier.

All is well

only good will come of this

everything is happening for my highest good.

and so it is.

Too hard!

Sometimes it is just too hard to play the glad game and be a Pollyanna.

I had a weekend in Glasgow which was all wonderful yet very tiring, I could hardly keep my eyes opened on the journey home.

I came home to John still in bed in and feeling rough with the cold and cough,Monday we had the health visitor, then a call to the doctor, essentially they can't do anything for this , or the sore muscles John has due to the coughing.

I was trying to organise a workshop for Tuesday and cope with John. Frankly it is too much at times.

I have to put deep heat on Johns aches, make up hot water bottles, run baths, wash sheets and PJs every day.

I long for freedom, spontaneity, fun laughter long walks with someone nice, staying out late a weekend in Paris,romance.

I got through the workshop which I loved and I got great feedback from all four participants,and that was good.

But then , no big wheel which we had planned, second time we missed this due to John not feeling up to it, we did not get out for lunch the other day , and we missed the lunch time concert today.

I feel I could scream. I am a free spirit , I hate being restricted, partly why I have settled for less money and working for myself, I HATE having to do thing,s feeling I don't have choices, not real ones anyway.

Sometimes I feel I will go crazy, I feel quite ill at times when I think of what life is like and what the future holds.

Everything revolves around John's needs, and apart from Sandra and Susan, most folk ask" how is John ?"


People think the longer life due to the new meds is great, but I am the one coping with what this means, I and it is often the woman, I giving up my freedom  to make this happen for John and at times I totally resent it.

That is how it is today. Tomorrow will be different, I appreciate the chance to offload onto you blog. glad you are here,you feel like an old friend.

I think I will go to the cinema tonight. and have my hair done tomorrow, maybe a ferry on the Mersey over the weekend.


It is just not the same without a partner who is able and can take responsibility though.

Blog am I a bad person?

I don't think so, these thoughts and feeling are normal. I have counselled so many folk who feel this way, the key is to get the feelings and thoughts out.Then somehow you can keep going.

Everything is as it should be
nothing is as it seems.


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.

unsettled

This last week since John came back from London has been hard.

He has had a very bad cold,and been in a bit more pain , back to taking the morphine, just a little.

I feel a combination of worry, fear, irritation ,due to the extra demands made on me. It tires me

being a Pollyanna , keeping the old pecker up, keeping the flat fresh and clean, the endless washing of the bedding and pyjamas. Medicine times to be remembered, medicine around in the kitchen, chair in the bath. When John was in London I lived very simply and the whole five days there was hardly a thing out of place, and just a little bit of underwear to wash through.

I hear on the radio the terrible cost of care of the elderly, yet when you are a carer it is hardly acknowledged, certainly not paid for. I feel the strain on the finances, as well as my energy levels.

All the trips to London, taxi's around Liverpool, trips away for me to a have a break.All has to be paid for , and of course I earn very  little nowadays.

I wish life was different, I would like to be looked after they way I used to be, but this is not going to happen again. I am the carer now. John seems much more dependant - which is quite usual, people who are elderly, ill, been in hospital, become dependant on doctors nurses, carers, family, wives, husbands, children,and so on.

Sometimes I feel trapped, I know I am not, I have choices, I guess, but they don't feel like real choices, I can't just run away, don't really want to to be honest, but if I did, I couldn't.

The oncologist said to John that from now on, even if there were new symptoms they would not treat them with radio therapy any more, I was quite shocked by this yet expected it at the same time.

I am feeling a bit fragile, not sure what is next, keep making plans and hoping they will come to fruition.

I am very tired too. I have started to have counselling, which is helpful, and more massage too.

Getting some work done in the house while we are away in June, and the garden too.

Hoping this will be good for me as well as John. I am not sure what I really want from my life at this stage, difficult to address this big question I feel my life is on pause for now.

I have to get up every morning breath in breath out, put one foot in front of the other.

Onwards and upwards.

times- they are a changing!

Andrew and Lucy off to France for their snowboarding holiday tomorrow, both on a high as good things happened for both of them at work,I am so pleased for them they really deserve this time ,they have been so supportive to us, and just last weekend to Johnny and Ellie too. I am very proud of them both.
Philip is feeling happy too, good things happening for him too at work, king of fun things.

John and I went to the Anglican Cathedral yesterday morning and lit a candle for Maureen and the family, I said the lords prayer for her as she would have liked that. I don't know if anyone listens to our prayers but sometimes the ritual is helpful to the person performing it.

Churches can be useful spaces for times like this.

We got the bus and John walked to the Cathedral from The Philharmonic Hall. The he walked to The Everyman where we had a nice lunch.

It is wonderful to see how well John is doing now, no morning carers thank God. He sleeps less now and can stay up later and longer.He travel to London and Cambridge under his own steam with a little help at each end.

Next weekend, he is going to spend two nights here on his own while I am at The Mill Hotel and Spa with Philip. I will let some people know that he is on his own, but he does not want carers in, he seems happy to try this out and although I am a bit nervous, I respect his wishes to do this.

I think now that if John has a relapse I will find it very difficult to cope with. last year I was preparing for his departure, and I may well have been ready to let go. Now though, I am not,I can't face going through all this again. Of course some day I will have to.

I am especially glad for Penny, Johnny and David that he is doing well, as they have had quite enough to deal with this last year.

Lets hope for the very best and prepare for the worst, somehow we need to do this.John says he has not lost sight of the seriousness of his illness and the fact that he will die. I guess that comes with age, I admire his ability to do this. Well done John.

I am taking an interest in  gardening , in pots, I think watching things grow is very grounding and slows me down a bit too.My aim is to have lots of colour by Andrew's birthday.


I am grateful for my family close and extended.
I am grateful for my friends.
I am grateful for nature
I am grateful for good food and wine
I am grateful my work

Just heard the first gay Asian men on Radio 4 on the eve of their wedding, they will be the first gay Asian couples in the world to get married legally tomorrow. Subod and Naranga is what their names sound like.
Lovely moment to share.
My card arrived to Mike this morning, Penny says he was very moved.God bless him,he has a tough time ahead.
I have booked our flights for Spain . June 3rd at 19 .15 Really looking forward to it.Sandra will come out for a week- happy about that.

Hoping to have the date for my weekend with Philip soon.

We now know Maureen's funeral will be two weeks from now.

I hope to visit Scotland in May too. Jackie is planning a family night while I am there. Good stuff.

I have 80% of the work done for tomorrow's workshop, so I can have a fairly relaxing morning doing last minute things I love this group and this work especially.

Sunday is Mother's day, I have always had mixed feelings about this day, but this year, I actually felt sad that mum was gone,and as my boys seem very genuine about wanting to spend time with me on this day I find myself looking forward to it. Let the day unfold, let other take charge, that is good for me what I need to do more of.

I loved Twelfth Night what a great feel good ending in the new lovely Everyman. I also loved Grand |Budapest Hotel.

I am feeling better physically than I was mid week, but still a bit fragile, very tired, still slightly nauseous

but trusting in Beth treatments, the other treatments that she has recommended,and I am going to go for counselling again. Not been since Mum died.

I must take care of myself, I will be 66  this year and have had a huge amount of pressure over the last four years. Sandra is beginning to feel the effects of the years too.

We really need to look after ourselves and each other,thank goodness we have found each other again.

All shall be well
and all shall be well
and all manner of things shall be well.

March 27th

I have just heard in the last hour that Maureen died this morning.

She was a bright light in the world, last time I saw her was at David and Lara's wedding she was radiant with happiness and looked great in her white furry Russian style hat.

She was a fellow Scot and we amicably shared her three children.Who are all a great credit to her.

Go in peace Maureen ,safe home. I will keep an eye on your children , it will be my great pleasure.

Sun is shining !

Yesterday I went to Beth for  my treatment, she  used some new tools and although I felt quite nauseous yesterday and slept for about 18 hours I feel much better today.

My foot feels much better which is good because I have missed walking in the park. and my arms are a bit better too, I miss knitting and writing and all the things which are good for me and manage my stress levels.

Feeling better and the sunshine lifts my spirits, and thankfully I will be able to go to Everyman tonight to see Twelfth Night, yesterday I was not sure this would be possible.

I still have huge responsibility for everything and sometimes I feel it on my shoulders.

I think all five of us take on a lot of responsibility, maybe the Collins gene..

John is at the hospital today to see the oncologist. I hope he will ask about us going to Spain, I really would love to have the flights booked.

Maureen is really ill the last few days, Penny feels sure this is the truth this time, she and Johnny take day about being with her and Mike, they are great kids.

I don't know how they do it with all they have to do with their own families, very good partners of course.

I think waiting for Maureen's death is making it hard to make other plans it seems so heartless.

Although Johnny and Penny still ask us to plan the next visit.

  I hope Philip will get back to me with dates for our weekend away soon, then I can make plans for John's travel, then I can join him as I did last time. Matthew and Marie are keen for us to visit too, prepared to move beds downstairs for John, so kind as John would like to go there.
I miss my family, siblings and partners, and their children, now we have Lachlan Matthew, really looking forward to meeting with him, wee soul.

Phil has painted the stove and got the cot out and cleaned it. I am very grateful to him.

Philip's things have arrived in Castlenel which is good news.

This means that we can trust the driver, and can now get the bed and the screen over too.



 I had to cancel work yesterday, have not done that for years and years, but needs must.

I want to have the energy for Last Saturday Event ,this Saturday. I have six people and am really looking forward to seeing them all and  encouraging their creative ideas and plans.

It was Anita and Philip's golden wedding on march 25th ,congratulations to them, it would have been Susan and Gavin's on March 10th.

It is Anne and Henry's in Early April. I think it is fantastic that they have stayed together through all of life trials and tribulations.
 Not an easy thing to do.
Of all life's challenges I think , as does Adler, the" relationship "is the hardest to sustain.
Work and Friends and Purpose etc are challenges but seemingly a bit less demanding, a bit of a generalisation of course.I am sure that in some cases the relationship is what allows us to face the challenges in the other areas. it has been for John and I thankfully.

All shall be well
and all shall be well,
and all manner of things shall be well.


And so it is!

Day off after a very busy two weeks!

Man U won last night which is very cheering.
This is the fist day that I have had nothing in the diary for a long time. I stayed in bed late drinking tea , doing morning pages , journals ect. Browsing on the net ,found a £35 tablet but did not buy it in the end. I am actually looking forward to having my computer fixed up by Andrew.
Also looking forward to  better weather and watching my garden grow.

I am still suffering with painful arms and foot, the doctors have given me painkillers which are helpful sometimes,but I need a better solutions.
It reminds me of the time I had Polymyalgia , painful mornings till the meds kick in. It does get me down at times when neither of us can do simple tasks,like carrying bags of earth or even some morning lifting the duvet is painful.

I hope between Beth and the GP it will all turn out well.

John's befriend-er came today, it was not in the diary, John forgot he was coming, then the guy to service the hospital bed came too about two weeks late. It got me down as this was my one day to have some down time. Still! worse things happened in the war.

I am trying to plan my weekend with Philip , ( he won this at work) but with Maureen being so ill I don't like to impose on Penny and Johnny to care for John, but we do have lots of green vouchers so if \john can put up with it we can have an all night cared here.

I want to go to Glasgow to see the family, especially to meet little Lachlan.

I want to plan our trip to Spain but not sure if John is really up for this he is a bit unsure.

It will be busy if we go, and fun too, but if not, I hope John can have a longer time in London and Sandra and I can go, just the two of us. I would enjoy that a lot.

I enjoyed The Book Thief last week, an afternoon at the cinema on my own, bliss.

I enjoyed seeing Andrew on Saturday and Sunday, we watched Zodiac which I really enjoyed.

I enjoyed going to Salford to see Philip, although he was quite hung over and tired, but we did manage a nice hour catching up.

I enjoyed going to Host with Andrew Lucy and John on Sunday evening.


Looking forward to going to Fact with J&A&L tomorrow night.

There are always good things ,sometimes we have to remember that especially when we are tired, feeling unwell, or the news gets you down.


Maureen is very much in my thoughts right now and all her children who I loved spending time with a few weeks ago, I wish David was closer or that I could go to visit with him, he must feel so lost being so far away, when his mum is dying.

Everything is as it should be,
nothing is at it seems.

It is a mystery.

After "The London Weekend!"

Dear blog,

I feel so low today, we had such a great weekend and I had such a sense of freedom. I feel like a butterfly having to go back to being a Caterpillar.Not sure it is possible, back to a restricted life, carers. medical regime, everything taking a long time, no evenings out, lots of laundry, sheets pyjamas, extra house work.

Lots of people visiting John , which means my life goes on hold, making tea, cakes, entertaining.
Mostly I don't mind, even quite enjoy it, but today, after the weekend, and the evenings stretching out, I feel like making plans to travel, to OZ, Hong Kong, Cornwall, Scotland, lots of places, new horizons. I feel like expanding The Metaphorical Toolbox, seeing more clients, I am not cut out for full time " home carer/housewife" I like it as one aspect of myself, but I like nights out, coffee with friends,  travel, new courses, learning and teaching new skills,I especially like spontaneity which has totally gone from my life.

I know what Susan would say, cherish this time, someday you will wish for it back again, and I know what she means. But for today,it is hard going back into a caterpillars skin

John will be home tomorrow he has had a great time in London and I am looking forward to seeing him and hearing all the news.I just wish we could have our old life back, but if wishes were horses, I don't even know what this means. If wishes were horses, what?

I enjoyed the weekend, the play, the boys,the food, London, and I enjoyed yesterday,I saw two clients and feel I did good work. It is the prospect of slow days that  are filled with routine things to do which feels hard today.
Not knowing how long this will go on for,is tough.I have been taking a day at a time and not look forward too much. But now somehow the thought of life continuing as it is feels very hard very upsetting,and of course there is the inevitable guilt I feel admitting that.

I watched Father of the Bride last night,it is really a silly film, not as good as the one with Spencer Tracey, but I missed my dad and just cried and cried for a while, it just hit me  the sense of loss.
Maybe this is why I feel a bit down.
I will go for a walk that always me good. I have a sore foot and sore arms , Beth has been working on them, but I will go to the doctor  too,I have just made an appointment for the 27th of February, seems a long way off. crazy.

All shall be well
and all shall be well
and all manner of things shall be well.

Peace , ah, peace, there is a river running through my life.

Thank you for listening Mr blog.

Good news today

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!

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 !

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








.

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.

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.