Living With Mesothelioma –My Diary — A very Frosty Start and good news on a Trial in US

A very frosty and cold morning

Picture sent in by Teresa Frecker

Yesterday was a quiet day we just pottered about and tidied up and took the dog for a walk and posted the Christmas Parcels as the Post Office was open.

Then last night I found one we had missed as I had to find an address. So a trip up the post office again today.

Ray had a parcel left when we came home it was all the way from Hong Kong and Louis went mad over it. It was only a camera case but he was smelling smething on it and wondered if it was a doggy smell where the dogs run around smelling for drugs. It was so weird that he wouldnt leave it alone so Ray took the wrappings off and Louis tore it to shreds.

We have had a great discussion on dreams on a private forum so interesting

A friend wrote  Very heavy stuff here for a Friday. Here’s what I recall from my psych nurse days. When we got to sleep our left brain (practical) shuts down and goes to sleep instantly. Our right brain (creative) comes alive as it has no competition from the left side. Thus allowing us to imagine, create, develop and process thoughts, ideas, feelings and emotions. Most everyday strange and bizarre mixed dreams are purely a collection of random thoughts influenced by what we may have seen, heard, done, thought during the day time. Repeated dreams that follow a contextual theme and disturb your sleep do tend to signify underlying anxiety or tension which if left unresolved can be exacerbated by sleep deprivation and its good to seek some help.

I have added — they have also found that people who have a bad sleep pattern dont remember things as well as someone who sleeps well and dreams therefore the conclusion is that we sleep and everything is sorted and tucked away in memory saving the good parts and discarding what we dont need — this causes us to dream

All great for a Motorhome Forum I love discussions

Micheal Vigo has written a great book on the subject

http://www.dreammoods.com/dreamdictionary/c2.htm

Space Odyssey 2010

 

Some cancer news

http://www.ncbi.nlm.nih.gov/pubmed/17785569

RESULTS:

The initial cohort of 17 patients received SS1P QOD x 6 doses and the MTD was 18 microg/kg/dose. Dose-limiting toxicities (DLT) included grade 3 uticaria (one patient) and grade 3 vascular leak syndrome (two patients). To allow further SS1P dose escalation, 17 patients were treated on the QOD x 3 schedule and the MTD was 45 microg/kg/dose. The DLT was grade 3 pleuritis and was seen in two of two patients treated at a dose of 60 microg/kg and in one of nine patients treated at a dose of 45 microg/kg. At the MTD of 45 microg/kg, the mean C(max) of SS1P was 483 ng/mL and half-life was 466 min. Of the 33 evaluable patients treated, 4 had minor responses, 19 had stable disease (including 2 with resolution of ascites), and 10 had progressive disease.

Then a USA Warrior writes on our Facebook page

recieved wonderful news yesterday from Dr Hassan at NIH. I was there having follow up CT scan and PET scan the last few days. He reports the scans show 98-99% shrinkage of the tumors, he said he has never seen results like this, the tumor continues to shrink even though I finished my SS1P clinical trial in May 2012. Of course I am very happy and so is my family. He states he needs to make some adjustments in the protocol of the SS1P trial and then it will be opened back up hopefully in January 2013 and he will be able to take on more patients to be in the trial. I hope he continues to get these great results in many more patients. Thank you God!

You wish we could all have the drug and give it a try but we have to wait until it goes through all the procedures and this is so frustrating to us.

We would be Guinea pigs willingly so WHEN DO WE WANT IT WE WANT IT NOW!!!!!!!

Rays Blog http://mesoandme.wordpress.com/2012/11/29/thursday-25/

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Living with Mesothelioma –My Diary– Its getting colder and got caught by Wednesday closing at the Post office

Its getting colder by the day thank goodness for a efficient central heating system.

Very nicely made realistic animated loop of burning logs in a fireplace

I miss the open fire of my childhood though but of coarse only one room was warm then and the bedrooms were so icy, although

I never remember feeling the cold as much as I do now Im older.

We stayed in and Ray helped me wrap all the Christmas presents so thats a job done.

We put the ones for the post in a carrybag and planned to walk to the Post Office after lunch (big mistake)

We walked out and braced ourselves for the cold wind that was blowing and then found it was Wednesday afternoon closing.

What an old fashioned idea that is. With all the large stores and out of town shopping mall’s in this modern world Wednesday closing just does not compute.

woman walking carrying brief case

So we had to bring the parcels back and then will take them this morning again.

I had an enjoyable time showing my friend in Australia my home town on google earth and showed her Whitstable which she enjoyed

The quaint small streets

http://qsview.com/9eoe3zc27iuz2o6zmdz1ap

I had an animated telephone call from the hospital reminding me of my appointment Monday for my scan. This is a great new service

that they have started. The phone rings and a animated voice asks if you are Mavis Nye you press 1

Then it tells you that your appointment for a scan is on Monday and the time and press 1 if you are going to attend.

They know then that you are coming. Very modern technology.

Im sneezing today and seem like I have a cold coming. The dreaded cold that you pray doesnt go to a chesty cough

The lungs cant cope very well with this very common cold.

We put the yellow box of my needles on the step on Tuesday night as they were collecting the yesterday at 6am they sat there all day,

Ray phoned up and they said they would be collected as somebody was doing the collecting.

So a box of needles sat there all day. Went out with Louis in the garden and the box has gone this morning.

I really do feel it would be better if there was a collection point at the GP’s or the Hospital it would be so much safer. Hmmmm noted for my next Locality meeting.

Rays bog http://mesoandme.wordpress.com/2012/11/28/wednesday-22/

Living with Mesothelioma –My Diary– Colder winds but dry After yesterdays rain.

Wind_blowing : Windy Storm Cloud Mascot with Menacing Blowing Blowing Wind Cartoon Vector Image Stock Photo

The weather is turning colder as the rains ease up and the North winds are blowing, I hope that doesnt bring snow as we have to much traveling to do Over Christmas and the New Year.

I have presents all in now so I must make a concise effort to start the wrapping and get them also write the Christmas cards to get them to the post office.

Stock image of 'Group Of Christmas Presents Under Tree'

We have a Warrior Rose who has bought a lovely Memorial bench in honour of Normans passing and she wrote  on facebook last night —I am in floods of tears, the memorial bench that has been put up for Norman were we used to sit and rest during our walks. The council have e.mailed me saying the residents close by are complaining that buses and HGV are stopping there. This is a load of bullshit, there have been two benches there since we moved here 29 years ago, i just dont get it. They want to move it somewhere else, not overlooking the fields were you can see our beloved Liverpool and the Welsh hills. Cant think what to do about this

We have all said different things but I said go to the Newspapers and Television name and shame them. Sometimes the councils  speak and do not think of the distress they cause.

Not a lot happening in our house just a dog walk yesterday which Louis loves and gets so excited as we set off  and as much as we love him Ray and I are pulled out into the cold weather and last night Ray got soaked on the last walk so I had hot drinks ready for when he got back into the warm and dry.

Rays Blog  http://mesoandme.wordpress.com/2012/11/27/tuesday-27/ He wrote a lovely poem to me made me so sad xx

Living with Mesothelioma –My Diary– Went to a meeting again and a Lovely Tribute from Elaine to our Mesowarrior Peter RIP

Gosh it rained heavy again yesterday.

We got dog walks in but then I had to go to K & Canterbury to a East Kent locality meeting.

We got soaked as we had gone round and round the Car park’s looking a space there wasnt one. So had no hope of a Disabled spot.

I saw a man go to his car so told Ray to go round but when we got there the man got a sheet of paper and closed his door again.

We traveled to another area and yes I saw a space and we got in it.

Ray went to the hut and told the man we didnt know how long we would be so he said put the Blue Badge up and a £2.00 ticket and that covers us. We have done this before when I had Chemo so it is a rule for all the time.

We walked to the education block and that when the heavens opened even more and we were like two drowned rats when we got there.

Ian who is the Chairman of the meets welcomed Ray and I and how did I like the LUNG DOG meet. I said how impressed I was that the NHS are doing well in our Area with a difficult Government and he then asked me would I be interested in putting my views at a meeting about transferring Thoracic Surgery from London to our hospital. I said yes of coarse so he is arranging for me to attend the meeting. I whispered to Ray they dont see me as a very ill woman they include me in everything and I do appreciate that.

Well the meeting got underway.

We talked about The Tool Kit which is a series of cards that show the list of things to look for when a patient is ill.

With Lung it is a cough etc etc and these will be hung up in places like the GP’s surgery as they have to bring things out into the public eye.

This is because they want to prevent illness at see it at an earlier stage as too many are seen to late when a disease has got hold –more to prevent than cure.

The did one for the Testicular cancer -get it out and check it out and went to the local Army barracks with it. it was a great success that the Army are now going to use it in all there Barracks.

So visual cards will work. you will see them in your surgeries and Chemists. We suggested toilet doors and there is talk of on waste bins in the street.

There is a cook book in progress for recipes when in treatment and they want recipes so I will get my Warriors to tell me theirs.

Every Gp has a Patient Liaison Group we heard so we should try and get on those if we want to get out point of view across.

It came to Dog meets and I got asked first which through me as I hadnt prepared anything but I fumbled through a talked about the

statistical conclusions of the east kent and it proves we are meeting targets. I also spoke about the solicitor there  saying they are not

Ambulance chasers that Mesothelioma is a Industrial disease and as such incur’s so much expense of travelling and heating etc etc that money is needed by a patient.

The Health and well being Mandate for the NHS came out this week and will be Enforced fully by 2014 with a dramatic cut in money So there are hard times ahead that is no fault of the NHS but the Government.

Then the carpark was talked about but not as I thought it was about the charges that people on chemo and radiotherapy have to pay so now they can buy a ticket for a week for £2.00.

The actual car parking will never be resolved as the more they provide the more it is full up. They provided a park and ride for the staff with its own bus running but there is now a 2 year wait for a pass for that.

So that was the end of the meeting and we just wanted to get home but called in to shop so we didnt get in until gone 7pm.

Our warrior friend that died has had a lovely story printed in the Hospice news letter I must share with you xx

My Tribute to Peter who Died last week –good night Peter RIP

Date posted: 20 November 2012 | No comments

pre-wedbless1

Peter Stevens, a patient of Pilgrims Hospice Canterbury, was joined by 20 family members and friends to see his sons Michael, Darren and

their respective fiances Debby and Lisa receive a pre-wedding blessing from chaplain Revd Liz Chapman on Friday 16 November.

“Peter was able to be at the very centre of this joyous family celebration which included two young bridesmaids who very nearly stole the show,”

said Revd Liz.

“Organising this special occasion is very much a part of Pilgrims philosophy of enabling

every patient to live life to the full while they have life.

“I would like to thank the team members for all the hard work they put in to help me decorate the chapel and for arranging extra flower

s for the occasion at short notice,” she added.

The ceremony was followed by a small celebration in the garden room, included champagne and wedding cake.

The occasion is believed to have been the first time a pre-wedding blessing has been held in the chapel. Another patient with

two young grandaughters was able to share in their christenings in the chapel nearly 14 months ago.

Elaine account of the day was so lovely and I have her permission to copy it here as a tribute to her lovely husband and wonderful family xx

I wanted to tell everyone about the lovely day we had last Friday at the hospice. The year before last our eldest son Darren and partner
Lisa were planning to get married. They already had Kayleigh who is six and then found out they were expecting Archie, so plans were
put on hold. When Peter started deteriorating they realised that when they did get married it wouldn’t be the same without him and really
wanted him to be there. Unbeknown to us Lisa contacted Liz the chaplain at the hospice to ask if it would be possible for them to get married
in the hospice chapel. She didn’t hold out much hope as the premises are not licensed but that she would contact the Bishop. With great excitement
Liz rang Lisa with the good news that the Bishop had granted permission for a pre-wedding blessin

g as it was special circumstances. Liz checked with the doctors that it would be ok for plans to go ahead and there was a week to organise the
celebration. Liz was fantastic – she organised everything – flowers, service sheets, photography etc. Our younger son Michael and his fiancee
Debby have a wedding planned for next August and this will still be going ahead but Darren thought it would be nice if Michael and Debby
joined in with the pre-wedding blessing. They too thought it would be lovely for Peter and one celebration became two. Our elder daughter
Samantha has two children – Kieran and Lucy and there was a mad dash to get outfits and dresses for the two girls who were to be bridesmaids.
Samantha also made sponge cakes which I dashed home to ice on the Thursday and went back to the hospice to be with Peter for the night
(I stayed every night). The next morning I popped back home, bought crisps, nibbles and soft drinks had quick shower and hairwash and dashed
back to the hospice with Peter’s clothes. The staff were fantastic – they gave Peter a full wash and brush up, dressed him in his finery, hoisted him
in to a special chair and it was so lovely to see him, handsome as ever even though a little short on hair. I changed myself, applied a little war paint
and then people started to arrive. Lisa had only ever wanted an understated wedding and only immediate family were presen including our younger
daughter Juliette. We went in to the chapel and the marketing manager had offered to take all the photographs which was a lovely gesture. Liz had
decorated the chapel beautifully with flowers and fairy lights – really magical. We had a lovely afternoon and Darren and Lisa had their wish for
Peter to be there. They treated it as their wedding day and have booked the registry office for 10 December just to make it legal and sign on the
dotted line. They will be taking just two witnesses and the children. Such a lovely thing for them to have done. Here is a link to the hospice magazine entry
I wanted to tell everyone about the lovely day we had last Friday at the hospice.  The year before last our eldest son Darren and partner Lisa were planning to get married.  They already had Kayleigh who is six and then found out they were expecting Archie, so plans were put on hold.  When Peter started deteriorating they realised that when they did get married it wouldn't be the same without him and really wanted him to be there.  Unbeknown to us Lisa contacted Liz the chaplain at the hospice to ask if it would be possible for them to get married in the hospice chapel.  She didn't hold out much hope as the premises are not licensed but that she would contact the Bishop.  With great excitement Liz rang Lisa with the good news that the Bishop had granted permission for a pre-wedding blessing as it was special circumstances.  Liz checked with the doctors that it would be ok for plans to go ahead and there was a week to organise the celebration.  Liz was fantastic - she organised everything - flowers, service sheets, photography etc.  Our younger son Michael and his fiancee Debby have a wedding planned for next August and this will still be going ahead but Darren thought it would be nice if Michael and Debby joined in with the pre-wedding blessing.  They too thought it would be lovely for Peter and one celebration became two.  Our elder daughter Samantha has two children - Kieran and Lucy and there was a mad dash to get outfits and dresses for the two girls who were to be bridesmaids.  Samantha also made sponge cakes which I dashed home to ice on the Thursday and went back to the hospice to be with Peter for the night (I stayed every night).  The next morning I popped back home, bought crisps, nibbles and soft drinks had quick shower and hairwash and dashed back to the hospice with Peter's clothes.  The staff were fantastic - they gave Peter a full wash and brush up, dressed him in his finery, hoisted him in to a special chair and it was so lovely to see him, handsome as ever even though a little short on hair.  I changed myself, applied a little war paint and then people started to arrive.  Lisa had only ever wanted an understated wedding and only immediate family were presen including our younger daughter Juliette.  We went in to the chapel and the marketing manager had offered to take all the photographs which was a lovely gesture. Liz had decorated the chapel beautifully with flowers and fairy lights - really magical.  We had a lovely afternoon and Darren and Lisa had their wish for Peter to be there.  They treated it as their wedding day and have booked the registry office for 10 December just to make it legal and sign on the dotted line.  They will be taking just two witnesses and the children.  Such a lovely thing for them to have done. Here is a link to the hospice magazine entry: http://www.pilgrimshospices.org/news/pre-wedding-blessing-in-hospice-chapel/

Rays Blog http://mesoandme.wordpress.com/2012/11/26/monday-22/

Living with Mesothelioma __My Diary _ The Wind Blew like a Hurrican all night

Oh what a night it was -it really was a night.

I woke up to what I thought was a train thundering to us and realised the wind was horrific outside.

I got up looked at the clock 2.30am so I went and looked out of the window and the trees and plants were being forced over to the ground.

My Dustbin had moved down the garden and it has a lot of rubbish in it so quiet heavy.

I went back to bed and everything was rattling. There were calm bits and then the roar again.

I did get back to sleep and then we saw the wind damage when we got up. The dustbin bought back and doors closed on Rays Garden cupboard, the gate shut and leaves picked up.

Mind you on one tree the leaves have been striped right off and blown away so I dont have the problem of picking them up like I do every year.

http://www.youtube.com/watch?v=bZI7FvZZL7k&feature=share

This was Exmouth last night so many people had floods so we were lucky

I took Louis out and a Motorhome was parked next to mine a man had wild camped in our car park as he sheltered  from the weather so I hope no one was cross with him doing that.

Traveling in the wind was awful.

When we walked Louis there was a lot of damage around –fences missing etc

We watched the lovely film Mermaid this afternoon, I was just in the mood for a sweet film and I did enjoy it so we had a great afternoon just chilling out.

MERMAIDS is the story of the turbulent relationship between a flamboyant, outrageous mom (Cher) and her two daughters (Winona Ryder and Christina Ricci) who just want a normal, stable life. Socially rebellious and provocative, the mother is reluctant to settle down, even at the request of her two daughters (one of whom, despite being Jewish, longs to enter a convent). The unusual family has moved 18 times in the last 15 years, usually whenever Mrs. Flax senses she might have to commit to a relationship. But this time the girls hope the family will stay put, and their conflicting desires lead to a final, near-tragic result.

mermaids7 150x150 Mermaids

mermaids1 150x150 Mermaids

All so cute.

http://mesoandme.wordpress.com/2012/11/25/sunday-29/  Rays Blog

 

 

Living With Mesothelioma –My Diary— Rain again so stayed in to make Plum Chutney –Christmas is coming

A very wet and windy night again but then the whole country hasnt escaped and there has been so nasty floods.

So we had a Saturday at home only Ray took Louis out and then I wrapped up warm and I took him out and I really enjoyed walking with my little boy and Louis seemed have a great time as he trotted along by the side of me.

I did some shopping on line on craft web sites so I really have got enough Christmas presents –well thats what i say today !!

I got out the plums from the freezer and started my chutney that I keep promising to make.

Adaptable (Plum) Chutney

Makes 3 half pints

4 cups chopped plums (about 2 pounds)
1 cup minced onion (about 1 small onion)
3/4 cups raisins
2 cups brown sugar
1 1/2 cups apple cider vinegar
1 lemon, zested
2 teaspoons sea salt
1 teaspoon cinnamon
2 teaspoons freshly grated ginger
1/2 teaspoon ground cloves
1/2 teaspoon mustard seeds
1/4 teaspoon red chili flakes

In went all the ingredients

http://www.thekitchn.com/small-batch-recipe-an-adaptable-chutney-urban-preserving-with-marisa-mcclellan-173002

 

 

 

 

 

 

 

 

Mmmm was smelling nice at  this point

 

 

 

 

 

 

 

 

Gave it a stir

 

 

 

 

 

 

 

 

And there it was all bottled up, with some spare in a box in the fridge.

 

 

 

 

 

 

 

 

We are all snuggled in for the evening watching strictly and X factor it is still raining out there –Oh dear

British Lung Foundation have just printed this on Face Book –a really lovely lady that has worked so hard she really deserves
Recognition
Check out Chris Knighton and her daughter Vicki on the steps of Buckingham Palace, where Chris received her MBE from the Queen last Friday!

Chris’ husband Mick was diagnosed with mesothelioma, a cancer of the lung lining, in 2000, having been exposed to asbestos whilst serving his country with the Royal Navy. He died just 7 months later. In memory, Chris started the Mick Knighton Mesothelioma Research Fund (MKMRF). Over a decade later, operating under the umbrella of the BLF, the MKMRF has raised over A MILLION POUNDS for mesothelioma research! Among Chris’ many achievements is the groundbreaking ‘Mesobank’ research facility, co-funded by the BLF, launched earlier this year to enable vital research in the causes and treatment of mesothelioma. Chris, you are a true inspiration to us all, and many congratulations on your richly deserved MBE!


Living With Mesothelioma –My dairy — A Very Wet Stormy Night

I knew we had had a very wet night even if I did sleep through it as we could hear the cars going through the water in the lane as I took Louis into the garden at 6am this morning.

We have had some horrendous weather this week and it isnt over yet the forecast is still bad for tomorrow.

FAMILIES were forced to flee a torrent of water gushing towards their homes after the banks of a canal dramatically collapsed.

Engineers are desperately working to try to dam the flow after a breach of the Great Western Canal in Devon sent millions of gallons racing down a hillside.

Read more:  and watch the video

http://www.thesun.co.uk/sol/homepage/news/4659902/shocking-images-of-floods-bursting-canal-bank.html

Denise the Meso warrior had her funeral today and she didnt want black –Oh I so agree with her and I hope people did dress in her favorite Leopard Skin

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We will always miss you xxx

Then Jan has had a bad reaction with her Chemo Heart was over 160, BP 190, no oxygen was getting in, my body flared up bright red, lips were burning It sounded almost like her body was in shock.

We warriors are certainly going through so much  I wish we could all find that cure and stop this madness.

Stop the World: I Want to Get Off Poster

Stop the world I want to get off
And find myself a better ride
Stop the world I want to get off
Payed in full and now goodbye
Stop the world I want to get off
And find myself a better ride
Stop the world I want to get off
Any place we’re passing by

Silly things we talk about on Face book Sprats were mentioned and now I want some -I haven’t had them for years.

Whitebait is inch long young Herrings or Sprats.  The most popular way to cook these flavoursome fish is floured and deep fried, served with lemon wedges and freshly chopped parsley.  The weight given below includes a small ice glaze, just enough to keep the fish separated for easy portions.

Whitebait

http://www.fishfanatics.co.uk/shop-whitebait-1.php

Rays Blog http://mesoandme.wordpress.com/2012/11/23/friday-28/  i had to read this to find out he has a head ache –hmmm we must talk more Moving picture waving hand hello animated gif