living with Mesothelioma…A postcard from Dorset… new years eve Morning.

We have had a lovely walk in the Purbeck Hills just near our Camping Site.
The weather has been very windy all night and plenty of rain but as we are sheltered here it wasn’t that bad. We love listening to the rain.
We had a late night out so we were tired anyway.


It. Was very refreshing walking in the rain because the hedges shelter you from the weather.


Ray is always taking pictures of my rear view


Now Louis,s rear view included


looking back to the Camp site


I think even Louis was pleased when we decided to turn back ..Bless
now we are in the Motorhome where I’m preparing to cook party food for tonight’s festivities

I wish you all a very Happy New Year ..may 2013 be a good year for you all and I personally hope I will be here saying Happy 2014 to my friends all my Mesowarrior,s – Posted using BlogPress from my iPad

living with Mesothelioma ..My Diary.. postcard from Corfe Castle

Still the weather is so mild as we woke up. I had woken up in the early hours with a painful lung and all my body feeling numb… Didn’t like that feeling.. As I got up when we finally decided I just had pins and needles in the hans and feet so I had returned back to normal.
We packed the Motorhome down for travel and set off to Corfe Castle. the car park was easy for the Motorhome.. no barriers and plenty of good spaces.
we walked up the hill to the village.


The Boar Mill Cottage had plenty of water rushing through.


Walking up the hill was tiring but we made it


we had a lovely walk around as it is a very sweet village and we shopped in the local cake shop buying local cake.
Fruit cakes with cider in mmm.


Back in the car park I cooked our dinner and as I did so the little steam train came by a tooting away as it pulled in the station.


so we ate our dinner and walked Louis again and then traveled back to our site.
We watched a film and we are now going to the club house where tomorrow we will be celebrating the New Year.

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Living with Mesothelioma …My Diary.. A Roast pork Surprise

The rain was very heavy through the night and then stopped as we woke up, although it was very late this morning.
We had a day around the site so we could explore the area, first though I washed the Motorhome again to see if we could get the marks off where the branch had hit us.
Lucky they did come off and no damage could be seen.
we strolled around with Louis as the scenery is so pretty even in winter.


It does look a little wet doesn’t it but it did stay dry most of the day and we had a house keeping day as we tidied up a but.
Then this evening Tony and Lois Sliced up a pork joint they had been cooking all day. We had pork rolls, roast potatoes,and stuffing balls, followed by Christmas pudding, they mad a lovely job of it.


A lovely time was had by all but it gradually got chilly and we all have said goodnight now and settled in the warm for a nice evening
Well done Tony it has been a great evening xxx

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Living With Mesothelioma ..My Diary.. postcard from Poole Dorset

Although the skies were overcast we set off to Poole Harbour today as we were on a mission.
Ray had already painted Poole Quey for our friends 60th birthday.


We arrived on the quay very easily and found the car park to park the Motorhome in. Louis on a lead and we set off to walk the quays.


it was blowy but not cold and I enjoyed the walk.


Ray found little buildings still there that were in the paintings


then he was over joyed to find the Captains House.


I loved all the boats that were tied up to the quayside


I made a dinner and we watched the sea when we got back to the Motorhome, Louis also watched as people were passing with their dogs,
It was growing dark so we set of back to the site. On the way a branch on a tree had been hit and it was swinging to us as we were powerless to avoid it. The traffic was coming the other way so Ray couldn’t swing away from it as it clunked on our roof. We are lucky and it looks like 3 black marks that might come off, we will have to see tomorrow.

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living with Mesothelioma …a wonderful Christmas Holiday

A lot to catch up on …. We traveled to Wexham to stay with our son and DIL and had an early Xmas, starting on the Saturday… This became our Christmas evening to hang our stockings up.
Our Grandson came over and joined the fun.
Opened up our Christmas presents on Sunday …our Christmas Day.


my secret Santa was lovely.


Louis Loved all the excitement


On the real Christmas day the pair of them washed the roof of the Motorhome as a treat
We then went to see Life of PI in 3 D and it was brilliant although I felt seasick by the end, it was to real.
Yesterday as our son traveled out to his Villa to be in the sun we traveled to Swanage and met friends for a holiday where last night we sat having a drink and a laugh. We woke up rather late this morning so we had a wonderful shower and late breakfast the decided to take Louis by the Steam. train into Swanage.
We walked down the lane to the Herstan Halt where we had to wave the train down. Only us got on but the train did have lots of passenger,s already on board.


We walked around Swanage


It was time to return back and we enjoyed the ride again.


Louis had been a good dog and he is now fast asleep, worn out after his exciting day out.
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Living With Mesothelioma –My Diary– Well Christmas is here and all the presents are wrapped –I wish you all a very Merry christmas

 

 

christmas message

 

 

 

 

 

 

 

We have been working away getting all the things together for the Motor Home to set off to my family and the lovely Christmas they have planned for us.

We have asked phone calls to ask do  you like this and do you like that, I wish that DIL of mine would relax and just serve it up but she likes to get every detail so  right.

I have given out all my cards to the neighbours and presents to the ones I buy for.

Ray has wrapped all the presents to take with us.

Ray has really felt this weeks Needles in his back but that would seem that it means they are working and also the reason why he was feeling sick yesterday.

But as the day has gone on he appears to have got better so he is happier now.

I hadn’t realised it is the Anniversary of Lockerbie  –I didn’t know it was before Christmas.

Photo: RIP.

Remembering xx

This was on my facebook and i love it xx

Merry Christmas all from all your friends at the Roy Castle Lung Cancer Foundation (and apologies for the out of tune singing)http://www.youtube.com/watch?v=YVMqI1L09JE&feature=youtu.be well done all of you it is really great

Its the shortest day today

Winter Solstice at Stonehenge

This was the Sun rise at Salisbury where aver 5000 people watched

 http://www.bbc.co.uk/news/uk-england-wiltshire-20797129

There has been a lot of leg pulling about the end of the world but it didn’t happen or though I bet there was a lot of people thinking to themselves –er just might.

But we are all still here with all our struggles that were the same last night but maybe we should be seeing it is a new beginning and try and change the bad from our lives and carry on with the good.

The Maya Empire, located in what is now Guatemala, reached its peak around the sixth century A.D.

http://www.history.com/topics/maya  I have read some of the history –I love delving and finding out.

Well here it is Friday when everyone is packing up work and Schools are closing down for Christmas.

You have time for the last little bit of food and the last present where you have forgotten a Auntie –so have a really wonderful time.

Ho Ho Ho Merry Christmas to all and to all a good night, animated gif of Santa Clause in his sleigh waving to you

But Also remembering the Mesowarriors  that have fallen this year –Norman and Peter who I met just before they died and also the warriors that are suffering with their Chemo and Radiation also blood counts  and their Carers are so unhappy but I hope they can find a smile and a happy time with their families.

You know who you are and you know how much I care  and how much I fight for the cure we all need,

thinking of you

 

 

 

 

 

 

 

 

Christmas candle burning animation

Rays Blog    http://mesoandme.wordpress.com/2012/12/21/friday-31/

Living With Mesothelioma—My Diary- IN Your Shoes– Well they certainly listened to me At Kent and Canterbury Hospital

Image of the Kent and Canterbury Hospital building. Find out how you can access Kent and Canterbury Hospital; including disabled facilities, route planning and transport infog. Find out how you can access Kent and Canterbury Hospital; including disabled facilities, route planning and transport information.rmation.

Had a great day today.

This was the day of the meeting at the Kent and Canterbury Hospital to meet with the Chief Executive of the trust for the “In your Shoes”

We walked Louis and had a quick lunch then set off but like always we arrived early at the P&Ride and traveled on the hospital bus from there.

The letter told us to meet in the Hospital Restaurant so we went there and bought a coffee. It was very noisy as a Christmas party was going on. They were passing round a box of pressents with each person choosing one. Secret Santa –which was sweet.

Other people were arriving and I could see the same letter in their hands as I had received. It reminded me of the You Tube videos and expected someone to start singing one by one, what silly thoughts you have when you let you mind wander.

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Whoops badly taken on the phone !!!!

Gradually the room emptied out and left just the people that were waiting to go to the meeting. We all suddenly were talking “Are you here for the Meeting ” “Yes are you” So funny.

Wendy and Moira came in and set my table as reserved so as everyone gathered we all started talking. A man with a guide dog was also in our group and he had a lovely dog. So obedient, so well trained.

We were all taken to the Boardroom where we were put with a person from the Trust. I and Ray were paired with the Human Resources Director of the Trust and a Lady member of the Trust.

I was rather pleased that they told us to go off to a side office by the Director where Ray was able to hear better as well.

We soon settled down and I had to tell my story of my coming into hospital to have my lung drained right through to no with my last scan. We made a list of good points on yellow post it. There were a lot of good points.

The whole treatment and  the great nurses’s Macmillan and all they did to make sure I claimed the right things and saw a Solicitor. Everything that was good right down to the P&Ride  so how easy it was to Park.

Then Peter took the bad list and wrote them on Orange post it’s. The way I was told in a Cupboard i had only 3 months to live, Appointments for the oncology first and then try to make the scan appointment work in when they should be issued together. The wait for results to long, Nurses and Radiographers not even knowing what mesothelioma was, so not reading notes to find out what was wrong with me.

The list grew very long as Ray had a few like carers not being spoken to.

We told them everything and I added in things that other warriors have found wrong in other hospitals although that wasn’t abut our hospital they listened.

I bought up about not enough trials and how we have to wait here in the UK for trials to be passed in the USA first.

everything was listed.

When the time was up we met with another group and the post its were put up on two sheets –one for good and one for bad and under headings. The longest list of bad  was under Patient Understanding and one of the partial sighted man was that we worry about Interpreters when a person cat speak but fail to help with assistants to see, he said if only there was one person that understood what a blind person needs, he cant see faces and only just make out edges to a bedside cabinet and people just put things anywhere. he said that a person that had a knife and fork given to him with a diner–the man had a broken arm in a sling. He had to go and cut it up for him an he couldn’t really see it. So its attention to detail that is lacking.

We put all our comments together so that we hadn’t duplicated and all met up again as a whole group in the Boardroom again where we went through the whole of the post its and really we had raised very similar points.

We were told that a report is to be typed up and sent to everyone and so the points will be listened to and be used. They have had some so far that are being put into action and now ours will be added.

Our hands were  shook and lots of well done and best wishes as by now everyone knew of the plight of a Mesowarrior that we have no cure and only  Palliative  care one that we find unacceptable.

I really feel I have educated the Managers of the Trust.

mv22

 

 

 

 

 

 

 

 

 

 

 

Ha ha !!! Ray has been playing around –Mavis with a pearl earring.

Rays Blog   http://mesoandme.wordpress.com/2012/12/19/wednesday-24/

Living With Mesothelioma –My Diary– A big Day Today at The Hospital Meeting “In Your Shoes”

Nice animated basket of flowers swinging on a hook

 

A big afternoon for me as I have to meet the Chief Executive of Kent and Canterbury to be questioned about all my treatment and what they can do to change things that are wrong. I have made a list but I feel like I have to talk up for all the Warriors at every hospital–its a big responsibility as I see it.Very nervous.

http://www.kch.nhs.uk/about/get-involved/groups-events/in-your-shoes

Didnt do much yesterday as it was a very dull and dreary day outside.

The dog walk was the same walk I bet Louis cant wait to be away in the Motorhome where he gets lots of off lead runs but the fields will be muddy that’s for sure as we have all had so much rain and the earth is really saturated. They had better not talk of hose pie bans this year, it will really mean they are not conserving water well.

Every river is full to overflowing.

Louis has woken up crying and I though he was ill but I have just been into the bedroom and stroked him, realize he had his claw stuck in a cover I use for him to sleep on.

Bless! I wonder how long he has been caught in that. He has been very patiently waiting for me to release him.

He is now fast asleep on the floor beside me like he has to catch up on sleep now.

Everything seems quiet in Facebook with the Warriors, I always wake up and wonder who has left us in the night as we have lost so many warriors of late and so many are ill.

I hate this disease and what it is doing to families. It seems even worse around Christmas. It must be because it is a happy time for families all buying their presents to put under the tree. Not a time for tears but should be full of laughter as families gather to celebrate.

Santa having a nice quiet cruise home after a hard day's night

Merry Christmas lets hope it is a very happy one for everybody xxx

 

 http://mesoandme.wordpress.com/2012/12/18/tuesday-30/  

Rays Blog

I never applied for this  it has come about by the Chief Excutive has heard about my speech I delivered to the hospital

http://www.youtube.com/watch?v=6_oS9prCxmE

In Your Shoes

Physiotherapist

In Your Shoes is all about listening to our patients to improve the quality of the care we provide. It gives our staff the chance to hear your experiences of King’s, and find out what is important to you, what we do well and what we need to improve.

Our inpatients tell us that privacy, pain control and good communication are important – but treating people with respect and dignity, involving them in decisions that affect them, and making sure the place is clean are considered to be the most important. Outpatients want to wait less, to get better information and to have quality time with the doctor.

That sounds simple enough, but what does it really mean? What are the key things that all of us can do to make sure that our patients feel that we treat them with dignity and respect at all times? Well, that’s why we need to put ourselves in our patient’s shoes, listen to what they tell us and act on it. That’s where you come in!

Throughout the year, we hold a series of In Your Shoes events designed for people who have received care at King’s. All we need is a couple hours of your time to take part in a series of one-to-one chats with individual members of staff so you can both gain a greater understanding of each other’s experiences. We want to understand what a high-quality service really means to you.

In Your Shoes is open to anyone who has been a patient at the Trust in the past year unless they are currently involved in a complaint against King’s.

What you said

Hearing things from the patient perspective is really key to King’s getting things right for patients.

During our Outpatient In Your shoes event in March, 19 patients and staff attended. The feedback was good with patients feeling positive about “the open discussion”, “meeting interested members of staff” and “being able to raise issues”.

Listening to patient stories was also very much valued by staff, with comments ranging from feeling “positive, happy, motivated and proud” to “It made me want to get others to hear the experiences and see how they can influence service change for the better” and “It made me feel that change is possible and that simple things can make a lot of difference.”

Key issues raised by patients included:

  • Initial reception contact can affect the rest of the experience
  • Planning appointments better and particularly co-ordinating tests
  • Continuity of care – don’t want to keep telling the same story
  • Keeping GPs in the loop
  • Waits in clinics
  • Transport and waits for porter too long

 

We also had some very helpful feedback, both positive and negative, about our new touch screen patient registration kiosks and changes to our appointments system which we can feed in to our outpatient improvement programme.

If you would like to know more about our upcoming In Your Shoes events, contact our Patient and Public Involvement team
Tel 020 3299 4618
Email kch-tr.kingsppi@nhs.net

 

 

 

Living with Mesothelioma –My Diary– No more Shopping its all done –well maybe !!!

Animated Christmas Tree in snow globe

We are really on the countdown to Christmas now so on that note I suggested going to Tesco and finish off the shopping

and if we went at 1pm then it should be quiet-I was right it was just nice to get around and pick up some high calorie things.

Chocolates and biscuits with a cheese board.etc etc.

Cheeseboard HERO

Funny Light at Tesco

The car Park was full but the shop wasnt –where were all the shoppers.

We had to go for a drive to get some brake fluid as Tesco was sold out –why? was everyone going mad braking.

I walked Louis around while Ray went into Halfords  for his brake fluid there.

We had a lazy afternoon when we got back and I didn’t have to put the shopping away as it was for the Motor Home.

Well just the cheese and meat that went into the fridge and freezer.

I sat and wrote out the neighbours cards and I will post them today but there isn’t much to do today.

Saw this cute way of making a Iced Tree

Photo: Gently remove the tree from the ball tool and place on a board to dry.  Sprinkle with a little icing sugar and edible glitter for a frosty, snowly look.  You can add silver or gold balls to the ends of the branches and place a small star on top if you wish.

Photo: Push the small ball tool into the base of the cone.Photo: You will need:  sugarpaste (I am using white, but you could also use green), small ball tool and pair of small sharp scissors.

It looks easy might give it a try today

Well must get breakfast an another cup of coffee and let the day begin.

Rays Blog       http://mesoandme.wordpress.com/2012/12/17/monday-24/