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.