Mesothelioma My Diary -Day 4 week 1 Chemo –Fresh Air again and a A wonderful Sunset

Woke up at 4am which was good so had a coffee and watched a bit of telly to drop off again in the armchair.

I have kept the sickness at bay again although it does rise up now and again.

Ray wanted to go to the art Department at the Range so I said I would try to travel in the car for the fresh air again.

We stopped at Tankerton Slopes for Louis to have a run and found 2 water kites flowing in the wind on the sea.

 

It looked such fun out there

Off we went to Sturry and parked so Ray went shopping and I walked Louis around staying around the car in case I got to shaky.

I did so I sat in the car to wait for Ray and he soon appeared around the corner, shopping in his bag.

I felt a bit sickly  on the way back and was glad to get back to my tablets.

We had a small lunch, jacket potatoe and a crispy rasher of bacon it was good.

I sat and rested all afternoon dropping off for a while and woke up so cold but putting the heating on soon bought me warmer.

A ring at the door bought a lovely bouquet of flowers from Bill in the desert –Thanks so much Bill!.

When I looked in the Lounge Ray had dressed Louis up with the bow.

Gradually the  sun set and we had a wonderful sight on show.

I fancied a Fish cake so made 1 each with chips and a Mango sauce so I did enjoy that and on the whole its been a good day if a little exhausting. It does make it hard work though getting through each day.

Im resting now again and will have an early night.

Linda Reinstein  has sent the info out  The Asbestos Disease Awareness Organization (ADAO) today announced that it is honoring Steve McQueen –what a lovely thing to do.

FOR IMMEDIATE RELEASE: Jan. 12, 2012  

 

Los Angeles, CA. – Jan. 12, 2012 – The Asbestos Disease Awareness Organization (ADAO) today announced that it is honoring Steve McQueen with the Warren Zevon “Keep Me in Your Heart” Memorial Tribute Award. McQueen, a global cinema legend in the 1960s and 1970s, passed away in 1980 from the asbestos-related cancer, mesothelioma. The Warren Zevon Tribute will be presented at noon on March 31, 2012, at ADAO’s8th Annual International Asbestos Awareness Conference in Manhattan Beach, Calif.

 

“I am so touched to accept the ‘Keep Me in Your Heart’ Memorial Tribute Award on my late husband’s behalf,” said Steve’s widow, Barbara McQueen, “Steve’s death was a long and painful ordeal and my heart goes out to those who have been exposed to asbestos as well as their loved ones. We’re all in the same family and I commend ADAO for the great work they do on behalf of asbestos awareness.” 

The life and career of Steve McQueen is a classic example of the American dream made real: a small town boy from a broken home triumphing over adversity to become one of the richest and most sought-after superstars in the world. McQueen lived every day as if it were his last and, by doing so, he lived an extraordinary life, both on screen and off. However, his life was cut short when he died of mesothelioma at age 50. 

“I am extremely honored to pay tribute to Steve McQueen,” said Jordan Zevon, ADAO spokesperson, who lost his father – Warren Zevon – to mesothelioma in 2003. “Mesothelioma is a tragic disease more common than most people know, and it is important to recognize Steve’s spirit and later plight in order to both cherish his memory and increase asbestos awareness. In their respective fields they were the definition of charm, intelligence, wit and the ultimate tough guy. However, as strong as they were, they are both lost to asbestos- related cancer. I am proud to present Barbara McQueen with the “Keep Me in Your Heart” Memorial Tribute Award. I am grateful to her for adding both Steve’s and her name to our ADAO family as we continue to work to end the threat of the disease for future generations.” 

“Steve McQueen is an American legend and we are extremely honored to recognize him in Warren Zevon’s name,” stated ADAO CEO and Co-Founder, Linda Reinstein. “Not only did Steve McQueen, like Warren Zevon, lose his battle against mesothelioma, but they both share a passion for fearlessly taking a stance. McQueen was quoted as saying, ‘When I believe in something, I fight like hell for it,’ and ADAO is proud to honor his courage by adding this cause to his many affects.” 

The Asbestos Disease Awareness Organization(ADAO), which combines education, advocacy, and community initiatives as a leading asbestos victims’ voice worldwide, announced its honorees and keynote speaker for the 8th Annual International Asbestos Awareness Conference, “Asbestos: An International Public Health Crisis,” to be held March 30-April 1, 2012, in Los Angeles, CA. The conference brings together renowned experts and asbestos victims in a united forum to enhance asbestos awareness, education, treatment, and collaboration. The conference is made possible with the partnership of the Environmental Information Association (EIA) and Independent Asbestos Training Providers (IATP). 

About Asbestos Disease Awareness Organization
Asbestos Disease Awareness Organization (ADAO) was founded by asbestos victims and their families in 2004. ADAO seeks to give asbestos victims and concerned citizens a united voice to raise public awareness about the dangers of asbestos exposure. ADAO is an independent global organization dedicated to preventing asbestos-related diseases through education, advocacy, and community. For more information, visit www.asbestosdiseaseawareness.org. 

About Barbara McQueen

Barbara Minty McQueen is the widow of American film star Steve McQueen and is a former model and photographer. She is also the author of Steve McQueen: The Last Mile(Dalton Watson Fine Books, 2007), which documents their three-and-a-half year relationship and includes candid shots from 1977 to 1980. McQueen has hosted several art exhibits of her work with shows in London, Tokyo, San Francisco, Nashville, Phoenix and Idaho, where she resides. 

Media Contact:
Doug Larkin
Director of Communications
Asbestos Disease Awareness Organization (ADAO)
(202) 391-1546  doug@asbestosdiseaseawareness.org 

http://mesoandme.wordpress.com/2012/01/12/quick-trip-out/ Rays Blog

Mesothelioma My Diary Christmas gets nearer

Well we are working hard to Christmas as so many people are in every household.

You have to make the extra effort for things to be normal for the family. We have to wipe away the tears of pain what ever the pain is. A lost one, or pain your’s, or someone you love is suffering.

Me Im hiding my pain of Mesothelioma as it keeps trying to get me but it will not win, well not that fast, and my Mr Nasty and his family is going to be bombarded again in the new year.

He keeps kicking me to let me know where he is and I have the strangulation feeling back, as there are 2 tumours 1 above the heart and 1 underneath.

I have my appointment for My Kidney function test on the 16th January which I must pass as I have only 1 kidney and that has suffered by the first Chemo, so I pray it can carry me through again, or I will have the decision to chance it and go on Dialysis if it fails.

Decisions, Decisions ——

So lets have a wonderful Christmas lets make it the best we can and just cuddle our families who love us dearly.

We had a snack at 11 and went off in the car to the Local Park where we gave Louis a run chasing his ball but he already had a great play indoors as he found his secret Santa and got all the squeaky toys and ran mad around the house throwing them all around. Naughty boy we have had to wrap them up again.

We got back home and I walked the neighbours cards around to deliver them all, came back and had lunch, that spoilt dog had Pate  and dog biscuits and that was it he slept all afternoon worn out.

Ray was painting all afternoon the picture is coming together well.

Rays Blog  http://mesoandme.wordpress.com/2011/12/20/no-frost-today/

Mesothelioma My Diary As I fight it all over again. Delivery of presents and Debbie has been honoured By ADAO in the USA xx

Busy day today so got up and showered early and took Louis for a walk, it was cold damp but the sun was shinning after a very frosty start. The pavements had black Ice on so now and again my foot slipped.

No roads have been salted so I hope there was any accidents on the roads.

We came back home and got ready for my Brother and Sister in Law to visit as we always exchange Presents before Christmas as we both go away or have family visit on the Day so we like a peaceful time to wish  each other merry Christmas.

They stayed and had fruit cake with us and Louis greeted them and then went to sleep.

So now all the presents are around the tree

We said goodbye to my brother as they had to go  shopping and then we had a phone call from a friend who said it was so cold and they are in Canterbury so Ray said dont worry we wont go out then come and have dinner here, So I had to rustle up a meal and lucky enough I had a large Shepherds Pie in the freezer and so I added carrots, broccoli and gravy and made rhubarb and custard and we have had a feast of comfort food.

Iv sneaked in here, to the Den to writes this, while they all wash up.

We had a lovely surprise last night when Debbie wrote in her blog

http://mesotheliomaandme.blogspot.com/2011/12/alan-reinstein-award.html

Alan Reinstein award.

 Emily, Linda and Alan Reinstein.

I am very honoured and proud to accept the Alan Reinstein award for commitment to education, advocacy and support to countless patients and families.

Alan Reinstein was diagnosed in 2003 and died in 2006, since his death, his widow, Linda, has fought tirelessly to change and educate the world about asbestos.
To have an award in her husbands name is a wonderful tribute, I am following in the footsteps of many wonderful and inspirational people.

This award belongs to all the warriors as without them I wouldn’t have the support I need to continue with what I do.
I am not sure if I can get to America to recieve it, I would love to but will have to speak to my oncologist as I may be having chemo in February/ March.
Thank you so much Linda for this award, it is a pleasure and honour to accept it : )
Well done Debbie and so richly deserved you work so hard in your support to us Meso Warriors xxxx

Found a good video to explain What is peritoneal mesothelioma?

http://www.youtube.com/watch?feature=endscreen&NR=1&v=Bn_mT9KL5hc

Rays Blog http://mesoandme.wordpress.com/2011/12/17/who-will-win/

Mesothelioma My diary Christmas is coming

Well Christmas is only a week away so Debbie and I are celebrating we have made another one along with several other Sufferers, it is a great feeling when you was given a death sentence as we were when we found we had Mesothelioma.

Good Luck to Steve who has had his results –Linda writes http://doingsomethingpositive.blogspot.com/2011/12/christmas-comes-early.html

Christmas comes early!

I won’t beat about the bush – just want to share the good news….No sign of any change in Steve’s condition; disease still stable!  Next hospital visit not until mid-March, unless there are any problems in the meantime.
I love the good news we get so much bad news through the year and we all get so sad when Mesowarriors have bad news.

Merry Christmas you two xx

Well it has been very cold although lovely and sunny and we are waiting for a big storm to hit us in the night followed by cold weather, I hope it doesn’t snow.

We had a walk but it was so cold in the wind I couldn’t breath and it felt like when I went up to vote all that time ago. I met so many neighbours all asking how I was and I felt so sad saying Im back to

where I was three years ago and Im going back to Chemo, I felt a failure really as everyone thought I was doing so well, and looked so well.

I had a load of cards delivered while we were out and lovely presents from Linda Rienstien in the USA, a Guardian Angel Pin from Rose Fletcher all so many lovely friends around the world.

No Secret santa yet for Ray or myself.

I made a nice homemade celery soup which warmed us up from the cold walk.

Rested in the afternoon and watched a bit of telly.

Then we had a salmon fillet with sweet potato’s and fried tomato’s and basil.

So we are all full up now we need to walk the dog later.

http://mesoandme.wordpress.com/2011/12/15/began-new-project/ Rays blog today

Mesothelioma My Diary- Week 3 day 1 drug only trial– what a wait.

Drug day today so had to make sure the dog was walked early and I was (according to Ray to my friend ) in a bad mood. I hadn’t realised I was but I think I might be.

I feel so wound up for some reason. I didnt mean to sound awful to Ray but I said ” I have cancer which Im trying so hard to find a treatment that can work and Im taking all these crap drugs into me. Of coarse Im in a bad mood. I cant be an Angel 24 hours a day every day. Im so fearful sometimes.

My friend had come to see me to make sure Im ok and she gets a domestic –you can tell she is a good firend and she made me sit down and tell her what is really getting me worked up.

I said I just want to walk away from all this illness, to be able to cope again and run my house like I used to.

She being wonderful soon had me laughing again and I walked down to the car and saw her off and we traveled to Maidstone, with me feeling like a naughty girl that had thrown a strop.

By the time we arrived at Maidstone Hospital with me in a better mood.

I booked in and then waited an hour before being called in. I was welcomed by the nurses’s and sat in the chair—I had forgotten to take my Paracetamol on the way to hospital so I had to be given those.

The drug was put up and the connection put in my wrist.

Like last week the syringe wouldn’t fit into the machine or it wouldn’t be accepted by the machine.

It took and hour of trying and then they realised that the syringe was to small and not made by the same company that the machine needed, so as to fit.

The other man down stairs in Charles Dickens ward (he is on the trial with me) had the right Syringe so thats when the penny dropped so the very clever nurse wrapped gauze around mine and low and behold it worked.

Poor Ray it would mean I would be leaving him for 2 hours so the nurse contacted the front desk to get Ray with me, we didn’t realise they would say why i wanted him and scare him.

So with Ray knowing and me settled down, an hour went by as the drug dripped into my vein.

The lovely garden where it will be nice to sit on a warm day.

So that was it I was disconnected and ready for home but it was 4.30pm –such a long time tired but feeling so much better.

We got to the carpark and off to home  and Dinner.

No Chemo tablet this week I have a week free– thank goodness maybe I wont be so tired –yawn ahhhhhh!!

 

Rays blog http://mesoandme.wordpress.com/2011/10/27/computer-happy/ I keep saying sorry and he says now stop that xxx

Mesothelioma Diary My 70th Birthday has been such fun all day.

Gosh what a day.

Ray found some of my baby photos and when I was young shall I show you here.

Cute I year old

My younger brother martin and me with our cat

My younger brother Martin and Myself with the cat

Mum me and Martin and when we got up we found we were sitting in the swans mess

I was a ballerina at this age and I dreamt of being a great dancer but I grew to tall

Love this photo of Dad and we are on the Douglass hand change with the sidecar

We always broke down and we ended up in peoples garages after the AA couldnt work on the engine Oh happy times .

Mum used to knit my bathing costumes and they always stretched in the water!!!!

The rosie cheeked school child so shy at that age.

The sweet 16

Gosh what memories so many years ago so much living in a lifetime

I have had lots of birthday cards and also birthday wishes on 3 forums I belong to as well as Early Birds on MHFacts  and then faceook so many best wishes enough to last me until 80

ha ha !!

Then the phone calls what a day I feel so happy today.

The weather was sunny at first and then the rain came over and then the sun came back again. We have had some more wonderful clouds they have been special and spectacular all day right to late evening.

Chris and Beryl came round to give me their card and present and they are coming in their Motorhome to my Party next week so they will join in the fun.

So today Ray had decide we go for a quiet meal to the Rose and Bloom as I described last night so we lazed around took Louis for a walk and then got ready to go out.

On arriving we sat in the bar ad had a drink until we were called to come to the table.

I chose the table for two near the window so that we looked out to see to watch the sunset which was lovely.

A party of 8 was opposite me and they were having lots of laughs and joking. A couple came in and sat at a table for 4 along side us they were lovely although he was covered in tattoos and wore a baseball cap and looked more like a bouncer but we got talking and he showed us a photo of the Guinea pig he had bought today and also the photo of his 2 Scottie dogs .

We wer talking about where we all lived and it was really so friendly I really had fun –just goes to show you cant judge a book by its cover.

No the lady on the other table asked what gypsy tart was and the waitress said “caramel ” and so the lady choose something else –really she would of like a bit of everything!!

So when I ordered and received my gypsy tart I went over to her and said “you don’t come from Kent” “pardon”she said “You cant come from Kent you dont know what Gypsy tart is so here have a try”

She did and she loved it so I explained it was made in Kent in the 50’s in the school canteens and thats how it became famous here in Kent thats why I knew she was a stranger to Whitstable , so here for that lovely lady is the recipe.

http://allrecipes.co.uk/recipe/9934/gypsy-tart.aspx

Gypsy Tart

Ingredients

Serves: 6
  • 400g (14 oz) tin evaporated milk
  • 340g (12 oz) dark mucovado sugar
  • 10 inch pre-baked shortcrust pastry case

Preparation method

Prep: 15 mins | Cook: 10 mins | Extra time: 20 mins, cooling

1.
Pre-heat oven to 200 degrees C, 400 degrees F, or Gas 6.
2.
Whisk evaporated milk and sugar together for approximately 10 minutes. Until light and fluffy and coffee coloured. Pour the mixture into the pastry case.
3.
Bake for 10 minutes.
4.
The surface will appear slightly sticky but will set completely when left to cool.
TipIt is best served cold.

Im sure she thought I was mad but we all ended up laughing.

We had a lovely meal I chose the baked Panochota cheese with Basil and Tomato for Starter

Lamb Shank and fresh vegetables then the Gypsy Tart followed with Coffee and it was well cooked and delicious.

We came away shaking hands with the young couple but they gave me a lovely kiss and a hug as we had had a nice meal together and I promised we would try the Sunday dinner there as we would met up with them again.

I came home and changed into my Pajamas and Im writing my blog on a very happy day one full of lovely memories .

I thought it was going to be a quiet night out and ended up a riot xxx

 

Rays Blog http://mesoandme.wordpress.com/2011/08/27/55-years/

 

Mesothelioma Diary. Reflections of a day

Gosh a very quiet day again today but as this is my diary I must down my thoughts.

Bill in the desert was supposed to go back on the 17th August and he didn’t contact which is most unusual and I stupidly panicked I left messages on Skype, facebook and MHFacts and emailed his wife. No answers until finally this morning he emailed me.

Mavis

Everything is fine, I am doing a mix of days and nights

on a repair barge in the Central Saf field which is shit

for signals and etc. Internet is like watching paint dry.

Will be back on terra-firma sometime next week I hope.

So don’t worry, all is well, if not incredibly hot, topping

out at around 52° C around lunch time.

Be Good.

PS: I would do murder for a beer!!!

I could have cried with relief -isn’t it funny how we get so involved with friends and they come to mean so much to you. I adore this man and Betty his wife.

Rod in Australia means so much to Ray and I and his lovely wife Julie who is battle away ith meso for such a long time and I managed to chat with Rod last night to give our support at such a difficult and sad time.

MHFacts Members they have held me up and I only have to say on the forum where I’m at at so many answer and support me also some PM me and talk to me some in the middle of the night if they see I cant sleep and Im on having a read.

There are people who do get to mean so much to you.

All the Mesowarriors are so close to my heart and we have shared so many sad and happy times together.

There is a good side to this dreadful disease and all the love and support that surrounds me is helping so much.

Well it hasnt been a boring day just a quiet day., a bit of washing, and packing the M/Home with enough clothes to cover this Bank Holiday and the following Long weekendso thats a good job done. All the rugs are washed but it poured down so I had to grab everything off the line.

Had a chat to my neighbours out the back who had been away so I prepared them that I will be back in chemo again as Joan gets so worried and last time I walked out in the garden with a stick as I felt so weak. I do hope the chemo Im given this time wont be so hard on my body (as the Doctor said)

Anyway she has made me promise that if she can help Im to just ask, but as long as she comes and chats with me like she did last time I will be happy with that.

We walked the dog around and chatted to people as we met them, having a laugh it really does me good, dont like sad unhappy faces around me.

Came back and settled the dog and went to see friends for another chat and pass the time of day with. Retirement is great isnt it do what you please when you please.

I was studying the meaning of the Buddha’s today and They have rules that I find very serine

1. Right understanding- This means a proper
understanding of Buddha’s teachings and of the world

2. Right intention- This means thinking kind or wise thoughts and doing so consciously free from fantasy

3. Right speech- This means not telling lies or speaking angrily but speaking  honestly and compassionately and well of others

4. Right action- This means  behaving peacefully and honestly

5. Right livelihood- This means not harming any other living creature. Buddhists believe it is vital to  look after the earth’s resources and to stop the pollution and destruction of the environment.

6. Right effort- This means using discipline and control to overcome difficulties. To think before acting

7. Right mindfulness- This means paying full attention to what is going on.

8. Right concentration/ meditation- This means to be able to be at peace in any situation  through an ability to focus deeply  on it.

The Five Precepts help Buddhists follow the path of samma kammanta (right action). They are as follows, refrain from:

Harming living beings Taking what is not given
Sexual misconduct Harmful speech
Drink or drugs

For Buddhist monks there are additional vows which they have to undertake.

In Mahayana Buddhism there is also the need to practise the Paramitas – perfections, especially the first six which are:

Giving Keeping the moral precepts
Patience Strength to preserve
Meditation Wisdom

By following the correct action Buddhists believe that they will eventually achieve enlightenment and reach Nirvana.

They are good rules to living life !!!! 

Rays blog http://mesoandme.wordpress.com/2011/08/25/no-tv/