Living with Mesothelioma -My diary- they have had floods today OOP! North but we have had Sun.

We have all had a letter in reply to the ones we sent to the Prime Minister regarding  a very amused Jonathan Djanogly in the Houses of Parliament. When debating the Defamation Bill.

http://www.jonathandjanogly.com/content/defamation-bill-debate

He denies that he made light of our Disease so we have to leave it there now.

Our Frank is still travelling on buses and has arrived in Newcastle tonight, an amazing journey from Salisbury.

So if you see  this man –who does look like the Archbishop of Canterbury- Say hello.

He has got caught in the storms and floods we have had in Newcastle today though.

Newcastle Quayside flooding

http://www.chroniclelive.co.uk/north-east-news/evening-chronicle-news/2012/06/28/flash-floods-hit-newcastle-videos-and-pictures-72703-31284080/

We have been so lucky and it has been so very hot and humid 25C outside . We were  worn out just going to Home Base. I took Louis for a walk as it was to hot in the car for him.

Then the garden centre, where I shopped in the farm shop, as they had strawberries and cherries.

I also bought lovely cherry tomato’s, peaches, melon, avocado pear  and cooking apples.

I had the avocado and prawns for dinner tonight, we have eaten the strawberries and some of the cherries, they have all been very nice.

The evening is very warm so we have been in the back garden where there is a wonderful moon appearing across the skies.

Rays Blog http://mesoandme.wordpress.com/2012/06/28/thursday-8/

Living with Mesothelioma My Diary.

A very warm day from early in the morning to evening. This is so much better, makes you feel so happy.

I had a email from Macmillan with a date to attend  the Macmillan Patient Training Event, then a date for  Lung Disease Orientate Group meeting and  The Patient Conference, it all sounds very interesting .

I will take one step at a time so first the training event in July.

Ray had to go to the bone cracker again –Chiro Practic So I went with him but walked Louis out to the Beech at Hernebay

We walked from Downs park to the grass on Beacon Hill. The sky was blue, the see as well with green grass after all this rain we have had, a workman was cutting the grass so there was a lovely smell.

Ray came out looking happier with his back all worked on again and we drove home for Lunch.

A appointment came in the post for my Sept Scan -that was good and makes me feel Im in the system OK.

A couple came to look at the home next door and they seem pleased with it so we will have new neighbours soon I hope so as the garden is full of weeds and long grass.

My friend Frank has been riding the buses this week as he got a free bus pass on his 65 birthday, he has travelled from Salisbury and has arrived in Leeds tonight so he should  get to Scotland by the end of the week.

It might have been free on the buses but he is paying for his bed and breakfast each night.

He has been twittering his journey and I hope he writes a blog when he gets back home.

 

http://mesoandme.wordpress.com/2012/06/27/wednesday-9/  Rays Blog

 

 

Living with Mesothelioma –My Diary– A very Interesting Phone Call Today.

 

Oh dear another change in our life

http://www.telegraph.co.uk/news/uknews/the_queens_diamond_jubilee/9357084/Parliament-clock-tower-home-of-Big-Ben-to-become-Elizabeth-Tower.html

 

The clock tower of the Palace of Westminster – known to millions by the name of the bell it houses, Big Ben – will in future be known formally as the Elizabeth Tower.

Im afarid it will always be known to me as Big Ben.

We have had a lazy day, as the weather has been hot and humid, but we went out and enjoyed the fresh air with Louis and I had 2 letters to post booking 2 Rallies as Im planning my life again.

In the afternoon I was just resting after lunch and a fly came in the open door. Well that was it Louis got real exercise then. Chasing it all afternoon.

He was shattered and fell asleep exhausted.

He slept the rest of the afternoon.

I had a Telephone call from my Macmillan Nurse and she gave me a contact number to talk to the Kent Medway  Cancer network  Disease Orientated  Group —which I did and Im being sent all the details of what will be expected of me as a Patient Representive within the group.

It all sounds very interesting and I will be able to gain lots of info, from the Oncologists and Nurses with in the group Conferences. I hope they can learn from me.

It will be a great experience and I will be in awe in the conferences.

Rays Blog

http://mesoandme.wordpress.com/2012/06/26/tuesday-8/

Living with Mesothelioma My Diary. Sunny Day and Gardening today

Loved today as the sun shone, it makes you feel so much better.

I changed the bed,  got the washing in and out of the washing machine and enjoyed hanging it on the line. I love the smell of the washing when its come out of the machine.

My machine has been working for almost 12 years and I wonder how long its going to last as I want to replace it with a new one

Hotpoint AQ113D697E White Titanium 1600RPM Washing Machine

But my old faithful has been so good to me and is like an old friend.

Ray and I worked together cutting down plants that were growing to high with all the rain we have had lately. It looks better but soon we will be doing the Autumn cut down and no real summer yet.

What do have to do to get the sun out and stay out.

Lunch was served and we then took Louis for a walk. Funny enough council workers were cutting grass and trees down in an Estate we walk through and one workman was sitting in a wheel barrow.

He made me laugh and we all said good day to each man but I was remembering an Oil Painting I had seen

ha ha !!! good job he couldn’t read my thoughts.

My Friend Debbie has made a wonderful Video of her story.

So proud of her as we fight together with this disease http://www.youtube.com/watch?v=eqWpfTUxbV8&feature=youtu.be

Rays Blog http://mesoandme.wordpress.com/2012/06/26/monday-7/

Living with Mesothelioma –My diary A weekend at Barton Point on the Isle of Sheppy

Wow!! I have had a lovely weekend with the Caravan and Camping Club at Barton Point the Isle of Sheppy.

Friday was an awful windy evening and I wondered if we had done the right thing but then the sun was shinning through our back window as the sun set

It was a magnificent sun set the sort that makes you think tomorrow is going to OK.

It was almost 10pm when our friends finally arrived –at last.

We were parked around a lovely lake and in the morning we walked around it as people were waking up.

The wind was blowing over the water

The clouds have been racing over the sky’s being chased by the wind

We even had a Rainbow which always makes me think of the Meswarriors. I have been celebrating all weekend that I now have the next 3 months free before my next scan, so watch and come with me on all my travels as I really want to live a full life now. POSITIVE is the word xx

I was shattered after the week and Ray captured my reflection –40 winks.

The Views have been great. We had walks around the lake and up to Minister Beach although it got to windy at times.

http://www.bartonspointcoastalpark.co.uk/

This recreation ground features a lake with boats to hire, a pitch and putt course, a model railway; picnic area etc.

We were told what the round cut out pieces of turf were all over the field.

The Army have been clearing 2 weeks ago, bombs and ammunition and carried out a controlled explosion!!!

Just one of the round patches

As you can imagine we walked carefully around but as there were so many round patches we can see the Army have done a good job.

Saturday evening we all went to the cafe who laid on fish and chips for us which was good of them and we all sat chatting away.

Then we went back to Sonja and Kevins Motorhome and had so lovely wine and clunk the glasses to say cheers, and toast my great news.

We walked round to our M/Home to retire for the night.

Today we had a lazy late breakfast and kept taking Louis for a run and a play with his ball. he is lieing here now by my feet shattered.

We also had Sonja and Kevin visit us for a coffee in our M/Home and to chat about all things –as you do.

We have said bye to them but we see them this weekend as we are off again on a camping trip.

Came home and y neighbours Des and Sue have moved.

I wouldn’t say goodbye on Friday as we will be visiting each other, we have become such good friends. They have always backed me and seen me through all my Chemo’s and I have always been there for Des who has had problems with his heart.

Des emails me on Facebook everyday and this will continue of coarse. So we didnt have to say goodbye xx

Sonja has sent me a photo of me walking Louis in my dressing gown ha ha !! Im tucked away on the right with Louis

http://mesoandme.wordpress.com/2012/06/24/sunday-11/ Rays Blog

Living with Mesothelioma My Diary— Brilliant Scan news today

We had to get to the hospital today so breakfast done and dog walked saw us getting off Canterbury in a somber move as I was preparing  myself up for bad news.

With my tummy very lumpy and sore and bruised from the injections and ankles so swollen I felt things were very wrong. I knew Ray felt the same.

We parked in the P&R and caught the hospital bus.

I went in and booked myself in but a nurse came and said I would be delayed as they had lost my Notes. So we sat patiently waiting.

We people watched as there were several interesting people in the waiting area.

Then the nurse said we have your notes but your scan results are not there so we have chased then and told them it would make a farce of you appointment today.

I said I asked, 10 day ago when they did my scan, would they be ready in time and they said yes.

She said they are so slow but we have chased them now.

At last I was called in to my Doctor who said sh was just saying they might have made us wait but it is good news.

Yes I have shrinkage whoopee!!! I could see the report and every tumour had shrunk from 12cm to 11cm and one had shrink form 17c to 12cm Whoopee.

Good news indeed.

Toni my Macmillan nurse burst into the room.

Good your still here Im so glad I so wanted to see you.

I told here of the shrinkage and they all were amazed -I sure am becoming a long survivor –far longer than they could have thought possible at the beginning.

I told them about the channel 4 interview and told them I have turned it down as 3 months out of my life was to much and I didnt want the titles at the end saying –Mavis Nye died while making this film.

My Oncologist the nurse and Toni were laughing so much and Dr Cominos said too Ray she is terrible.

We carried on talking about my legs and ankles and she has given me a mild diuretic.

She agrees with me that going on waferin is now silly as the clots are gone she said if I can stick at it carry on as with warferin you have to be monitored and the appointment is to late in August as I finish in September needing blood thinners.

So that was it we had gone through all the things that were worrying me and they took the empty Injection needles from Ray.

Toni has something up here self for me to take part in with Macmillan twice a year and said she wants to put my name forward, of coarse I agreed and so I will get an email soon and it will be at Maidstone.

Some sort of support group for me to help in.

I really dont mind what I do to help others understand Mesothelioma.

I proud that they are proud of me and the survival of this disease.

The last bit was Dr Cominos feels that as my body has recovered from the Chemo she is willing when the tumours grow back to treat me on Carboplatin

Carboplatin belongs to the group of medicines known as alkylating agents. It is used to treat cancer of the ovaries. It may also be used to treat other kinds of cancer, as determined by your doctor.

Carboplatin interferes with the growth of cancer cells, which eventually are destroyed. Since the growth of normal body cells may also be affected by carboplatin, other effects also will occur. Some of these may be serious and must be reported to your doctor. Other effects may not be serious but may cause concern. Some effects may not occur until months or years after the medicine is used.

I was over the moon as I had been told no more treatment.

This was great news and also we never know that cure is round the corner –somewhere.

It was lovely to come out laughing and joking –we were all happy.

I got out and Phoned my Son and Daughter in law so they were sharing the good news.

As I share now with all my dear friends and thank you for the hundreds of lovely wishes over the last 24 hours. So many firend behind me –its getting me through xx

We went and bought steak for dinner to celebrate and chicken for Louis.

Rays Blog http://mesoandme.wordpress.com/2012/06/21/thursday-7/

Living with Mesothelioma -My diary – A lovely day for a walk

Wonderful sunny day again and so warm which is lovely.

Opened windows and let the fresh in it was so nice.

Met my friend Marie again and she warned us there is a man with 2 Staffs and a Labrador which have attacked a dog and its owner on the beech.

The Police are searching for him.

That made us worry but we didnt see him which is great as I dont know how we would cope if it was Louis was attacked. Its not the dog its the owners that need training how to train a dog.

It been a long job with Louis as he was a rescue and he had had a bad life. But you can get there in the end. He used to bark at everything and everyone. He has never bitten though so i dont want him being attacked and spooking him.

Ray has put it on the  web site he runs for the Granville Estate in the Neighbourhood Watch page just to warn others.

We took Louis for a lovely long walk which I took slowly and stopped to look at the sea and watch large boats passing.

A man fishing oblivious to us passing by

Little boats anchored

Louis and I waiting for Ray

I did enjoy being out in the sun and spoke to people as we walked around -everyone seem so happier as the weather gets nicer.

When I got home I had a phone call from the lady from Channel 4 and she carried out a lovely interview but she then said about the family talking and the camera would be with us 1 day a week for 3 months. I began to realise it wasn’t for me as life is to short and 3 months of tieing me down isnt really on so I have had to refuse.

I would have loved to be in a group discussion but not such a personal family  interview as it is so hard on them I couldnt ask them to go on TV and talk about their hurt.

The rest of our day was dinner and talking on Facebook so now I have tomorrow to get through and have the results of my scan —fingers crossed again.

Rays Blog http://mesoandme.wordpress.com/2012/06/20/wednesday-8/

 

If anyone feels they could do the programme and have a terminal illness not just Mesothelioma

Channel 4 documentary

I have been approached by a TV production company about taking part in a documentary about death and dying.
I have added a message below for anyone interested with contact details.
Channel 4 documentary series about people with life-limiting illness. 
Love Productions is making a primetime Channel 4 series about people who are living with a terminal diagnosis and have a short time left to live.  The aim of this series is to present the subject of death to a mainstream audience in an open and honest way and to explore how we as a society approach death culturally, practically, and spiritually in Britain today.
We are looking for people to take part in the series from a range of backgrounds and life experience who might just have a year or less to live. 
We’re keen to hear from people who are going through this journey – what’s it really like to face death? What becomes important? What becomes insignificant? Do people treat you differently? How has it affected you and your family? Are there any dreams you wish to fulfill?
If you, or someone close to you, are in this situation, we would really like to have a confidential chat with you on the phone. If you’re keen to find out more, we’d perhaps arrange to visit you to discuss the project and discover whether you would be interested in taking part.  It wouldn’t commit you to anything at this stage. 
If you would like to speak to one of our small and friendly team confidentially about the series, please email  HYPERLINK “mailto:tessa.heath@lovewest.co.uk” tessa.heath@lovewest.co.uk with your contact details and we’ll get in touch as soon as possible.