Living With mesothelioma -MY Diary- Oncologists appointment has been made –and its Halloween

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I had an appointment letter from my Oncologist for Thursday 5th Dec so I have now to wait for a scan appointment.  So pleased my Oncologist is keeping a tight rein on things like she promised.

On the whole we didn’t do a lot and I have realised the best time for me is the morning so Im going to turn my day around so up early and shower early then tidy up and go out for fresh air. Then  today I put that in to force. Up early shower and breakfast and its raining. Oh dear housework will get done early me thinks.

This sleeping in the afternoon is time wasting and yet it means Im so alert in the evening. But today I feel back on form although I have probably depressed Christine my lovely friend. She let me moan about mt demise last night but she has put me on a straight path.

Ray is running the dogs walks but I must get more exercise in so yes I have made new rules for myself.

Tonight the Australian Opera House is going to turn the sails blue

The Asbestos Education Committee and the Asbestos Diseases Research Institute will host a special Candlelight Tribute to honour the many Australians whose lives have been touched by  asbestos-related diseases. Marking the official launch of Australia’s first national Asbestos Awareness Month, this Tribute will be in honour of all those Australians who have lost their battle with  asbestos-related diseases and those who will continue to fight asbestos-related diseases well into the future. The event to be held on the foreshore of Sydney’s Circular Quay at Campbell’s Cove overlooking the Sydney Opera House as it is illuminated Blue, the international colour for asbestos-related diseases. During the launch there will be special guest performances by The Honeybees Choir.

The 2012 Lighting of the Sails.

https://asbestosawarenesstribute.eventbrite.com.au/

What a lovely thing to do and wouldn’t it be great if we did something like this. Tower Bridge Or even Big Ben would be great.

Tonight is Halloween and people have been digging out their pumpkins to make great pictures.

Karryanne

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Her little girl has been having a go and the result is lovely.

Beccy Photo

Very clever. So have a great time all you little ones as you go trick and treating.

Rays Blog is a sweet read —http://mesoandme.wordpress.com/2013/10/30/wednesday-63/

Living With Mesothelioma -Myiary- A Nice Day-

The weather after the storm is lovely as we woke up to the sun shinning.

I had a chat on the computer with Jan and we are very much of the same mind as we face a hard time. Jan is going to start chemo again as she is now at 4th line. She has had the Operation of taking the linings out but by a US Surgeon and although she has been able to get more years than I the Meso hasnt been stopped and so it grows on.

Meso is like a runaway train bearing down on us. You can see it coming but you are powerless to stop it as your best mate (Chemo) has run away.

We both had to get on with the day ahead so we said bye and I got my shower.

Ray had to go to the doctors for a Diabetus check up so Louis and I went with him. The traffic was very heavy and we had forgotten it was half term at the schools. We finally got to the Gorrel Tank car park and Ray went off to the Surgery and I walk Louis to the Harbour

People were buying their fish from the market

So many children with their parents, some were going to the beach where they were fossil hunting for sharks teeth, a popular thing here as at Reculver the banks are breaking down and uncovering the past.

http://www.herne.ukfossils.co.uk/

Fossil Collecting at Herne Bay

A lot of the children were going to the Swimming Baths for a shrieking time in there.

I then walked back to the car and waited and waited for Ray, when he did get back he explained that the Nurse was running 1 hour late.

We drove around to Tesco and I went in to shop while Ray took Louis for another walk.

I had forgotten it was Halloween and there will be parties, the children were choosing their costumes for trick and treating,   but soon remembered as the shop was so packed. People were Christmas shopping as well, which has bought the shop to its knees.

Everyone was blocking the way for me just to pop round and get a few bits.

Just a few tills were open as they didn’t see this rush either.

It was lovely to be able to get out and pack the car. Return the trolley and escape.

When I got home i took the frozen bits to the freezer and had a coffee that Ray had made for me and I fell asleep. When I woke up I had to put all the shopping away and tidy up.

A knock at the door bought a lovely Bouquet of flowers from the MesoWarriors

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Lovely deep colours thanks so much Warriors xx

Rays Blog http://mesoandme.wordpress.com/2013/10/29/tuesday-71/

Living With Mesothelioma -My Diary- We lived through the storm

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The storm arrived last night dead on the forecasted time of 11pm last night.

Just as we got into be the wind got up and the rain pored down. Then the wind really got up and buffeted us. We could hear dustbins rattle and bangs and clatters it was a wild night.

I did fall asleep and even got up for the bathroom and I never noticed Ray wasnt in the bed. He was walking around to make sure everyone was safe. in the park. In 1987 a roof had lifted off the office in the park and it landed on a home and trapped our next door neighbour  in her Parkhome so with that in mind he was worrying about the safety of other neighbours this time.

He picked up our dustbin but the rubbish was spread out. One way to recycle I suppose.

I did finally get up and make him a drink but it was 8am then and the worse of the storm was over.

Storm clouds over the Sheppey Crossing. Library picture.

Photo: Simon Hazelden sent us this pic from Acton.

On Facebook we have seen so many Photos of the damage like the two above.

We were very lucky we had a flooded lane and a street light broken, several plats and trees were broken off and both our obelisk ‘s were broken so we will have to cut them right back.

I have got on with house work although by the time I changed the bed I was shattered and sat down with a coffee. Ray did all the rest. I made lunch for us and sat down and fell asleep as usual. I will push myself tomorrow when life has settled back to normal.

My mind is easier today about things and life must settle down to normal. I feel Im shutting myself off in my mind and realised thats a question that carers ask on Facebook. Ye Im trying to stop hurting Ray and the family by not saying whats going on in my mind. Trying to come to terms with the fact Mr nasty is growing again, the chemo hasn’t done its job, is very hard.

Rays Blog http://mesoandme.wordpress.com/2013/10/28/monday-62/

Living With Mesothelioma -My Diary- The Big storm is on its way

We have so many warnings that it scares you just what is coming over tonight. We remember the storm of 1987 and this time they have managed to get plenty of warnings out.

The Ferries are not running the trains are not going to run until after the storm has passed.

The weather system, dubbed the St Jude’s Day Storm – named after the patron saint of depression and lost causes, whose feast day is Monday – is expected to reach the south coast of England on Sunday night and into Monday, bringing exceptionally strong winds.

It could develop winds hitting 12 on the Beaufort Scale – the strength of a hurricane.

A powerful weather system developing over the Atlantic could see Britain battered tonight with some of the worst weather conditions since the Great Storm of 1987, forecasters are predicting

http://www.youtube.com/watch?v=LLUxsmADWrA Will we awake to scenes like this tomorrow

http://www.independent.co.uk/news/uk/home-news/st-judes-day-storm-worst-weather-since-the-great-storm-of-1987-as-uk-braces-for-hurricanestrength-winds-and-torrential-downpours-8901530.html

My son rang to make sure we knew about it but how can we not know when its been on all day.

I had to break my news to him and my DIL as I had not been able to tell them the result of my scan.

He was sniffing and I said have you got a cold and he broke down in tears. He said he has been trying for so long to be brave in front of me but collapsed with the tears. Oh bless how can I hurt him like this. Why did Asbestos come into our lives.  I wish Government’s around the world could see what they are doing to people through their greed. We keep on but people are still working with asbestos with no protection.

I have been so blue all day and just sat around as to go out has been impossible in this wind. I feel I must pull myself together and get back into living and doing everything I want to.

I must stop feeling sorry for myself and I will Its Monday tomorrow a new week.

We lost another Warrior today Ian  Edmondson. It is his birthday today  so he entered and left the world on  27-October. How very sad.

He died in his families arms as they whispered it was Ok to go in his own time.

candle

 

 

 

 

 

 

 

 

 

 

 

RIP dear Ian as you gain your wings today and fly  over the Rainbow.

So sad !!

 

 

Living With Mesothelioma –My Diary. Picking myself up again.

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I wish I could put time its self back –right back say 20 years and I would have lived life to the full —maybe on reflection I did and if we did know  when we were going to die  would we really live life any different.

I have always done what I wanted to do and Ray and I have lived as we wanted to. It is so hard to say.

I have had so many letters, emails, and PM’s from so many people that I realised just how many friends I have, even if a lot are cyber. That doesn’t matter we have lived together an laughed together,and we help each other through the bad times. You can see a few in the comments on here and that is what yesterday was like. People have really lifted my spirits for me. My Elder brother has phoned as he couldn’t wait to see my blog. The news has devastated him and as I have always had another answer ready for the next treatment he cant understand I have got to a brick wall, bless him.

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I cant see beyond that wall at the moment but its early days yet.  I have to  research after Christmas -this is what we talk about so much we are so ground breaking that My Oncologist doesn’t know what to offer me  this is where we say there should be a central data base -we have pleaded so long. Luckily I have a LUNG DOG Meet in November and Im with Dr Shah who is the Maidstone Doctor for Trials -I will be asking him the questions and they have to find me answers.

take five

Take 5 & Stay Alive Pocket Books are at last being delivered so, if you wish to have some delivered for your group or you can leave them at the Doctors surgery or even a Library e-mail me your name and address to mavisnye@yahoo.co.uk

I was proud to talk on last years campaign

http://onestopmesothelioma.co.uk/more-videos.html

So that me I have really rested yesterday maybe because it was forced on me I had not come to terms with all the bad news. Not many times I drop to the floor but Im taking a long time to pick myself up.We dont know what to think at these times and with no one to say -we will do this or we will do that it leaves you in Limbo really.

Time will tell.

Rays Blog –http://mesoandme.wordpress.com/2013/10/25/friday-69/

Living With Mesothelioma -My Diary- The Scan result is bad news

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Well today is a day I didn’t think would happen but I have reached a big decision day. My scan is showing regrowth in some areas . The Chemo did get some areas stable in the scan 3 months ago but the report is showing that it cant hit all the areas.

Ct Thorax Abdomen , pelvis with contrast.

There has been a definite  deterioration in features when comparison is made with a previous study of 15/07/2013. Nodular opacites in the line of the pleura on the left are again noted these all appear to have increased in size. A marker opacity in the line of the oblique fissure inferiorly now measure about 36/22mm in size previously 31/17mm. A pramediastinal  opacacity at the level of the aortic arch has increased from 20x17mm in size up to 27x20mm. no new right sided pulmonary abnormality in the retroperitoneum is identified. The small hyperplastic right kidney is noted. no destrutructive bony lesion is seen.

Comments there has been significant deterioration in features when compared with previous study 15/07/2013.

This is mainly in the form of an increase in the pieural based masses previously noted on the left.

No evidence to suggest disease activity below the diaphragm is seen

So that’s it  the Oncologist asked me what do I want to do and I said. Well let my body have a rest and have another scan in 2 months and lets see if it is growing slow or fast. She was relieved as she thought i was going to say more Chemo and she doesn’t know what to give me, but I said don’t worry I want a rest, and lets see if the chemo is still working it just might be, she agreed.

There is a first line Trial coming out with Vinorolbine and a new drug. I said but  its first line and she said –now listen to this Mesowarriors —1st line trials are for us whatever line we are !!!!! That is new to me. so there is hope with trials then.

I shook her hand ans said I’m sorry I have let you down and she said don’t be silly We will talk again after the next scan.

I went down to the Chemo room in a daze I couldn’t really think. I couldn’t happy or sad but I needed my PICC Line out. All the nurses said hello and how are you. Errr its still growing. Well the reaction of sadness and Im sorry and we all had tears in our eyes. They all came over as the PICC line was removed and I realised they were dress in pink. Pink ribbons and pink tights as they are supporting breast cancer. Wouldn’t it be nice if they did that for Mesothelioma we are so the underdog.

So with the PICC line out and a two month reprieve we came home. We were both very disbelieving but I said right this has to be a great Christmas so there is a lot of planning happening. Im so pleased I threw away so much yesterday and that’s the way I will carry on –throwing away all the rubbish in my mind and in my head. I will carry on with the blog daily and this starts a new chapter, a new fight. When I have got it all straight in my head.

I forgot to say I told her of all the pain I was in so I suspected the news would be bad and she was amazed that I had been right and so she defo wants me on pain management. I said with Morphen and she said lets hang on as you have nerve blockers so 2 Paracetamol and 1 strong codeine every 4 hours  lets see if that helps first. I have taken 1 lot and yes it does help.

Rays blog for Thursday he has got round to today with his thoughts  http://mesoandme.wordpress.com/2013/10/24/thursday-66/

Living With Mesothelioma -My Diary- Waiting for Thursday to come

Today we have been watching the terrible fire in NSW Australia.

The poor people there worrying about their property and the toil on the wild life makes for a very sad story.

You pray for rain heavy rain for them but it doesn’t look like that will happen.

fire

http://www.blacksaturdaybushfires.com.au/

The Black Saturday Bushfires is the name given to the bushfires which started on the 7th of February 2009 in Victoria, Australia. the story is on the Link.

How horrific that fire can do such damage and this on today is on the out skirts of Sidney now. All we can do is pray for them.

The wonderful thing about Facebook is that we have friends everywhere and in Australia Rod wrote to me :-Rod Smith Gosh Mavis, this photo really brings back memories. Jules had only just come good after her first round of chemo, business was flat out, then whoosh – Melbourne ringed by fire. It was scary, this photo was taken near my brothers place.
I was talking to one of the pilots of the Erickson Helicopter Aircrane warter bombers (from Oregon USA but go all over the world, the ones in Australia normally go to Greece or Italy for your summer). He said the fires in Sydney are not near as hot or ferocious as the Victorian fires, but tomorrow is forecast for being catastrophic conditions. The fires are a long way from inner Sydney, but Sydney is very bushy – our Sydney home is only a few miles from the harbour bridge, but is surrounded by bushy parks and gullies.
Fires can move 50 miles in an hour – in short, no one is safe. But they are very prepared ……….. to have not lost anyone to the fire (the one reported death was a man who had a heart attack) is a true miracle, we do have a lot to thank God for!  xxx

Lou has explained to me she has had to plan and cut vegetation all around her home as you have to always prepare for fires before summer.  I learn so much from Facebook.

Good luck Lou with this weeks Chemo.

I have been so  sleepy again this afternoon  but then this morning I did tidy all our wardrobes and draws and Ray said where  are the things your throwing away. ermm yes –1 thing.

Im so bad at chucking away.

Tomorrow im going to do better as I really must sort through under the Otter man bed, well I hope to — They say Rain for tomorrow morning  so that will be a good excuse to stay in.

Well this is Tuesday almost over so only Wednesday to get through and then Hospital Thursday. I realise how I’m wasting time worrying about scan results. Its the way we are, as we all have this wait our families are waiting and friends are waiting to see if I can go on as the way I see it I have held off the 3 month death sentence so many times but there will come a day when I cant hold it off. Positive, positive I keep telling others but it is just something we say. We have to wait to see what a picture on the computer will tell my Doctors. The scrutinize every inch of my Lungs and body from Pelvic  to neck. They out to check my head to see if i have got a brain as Chemo Brain is getting worse this time around. images

http://www.facebook.com/photo.php?v=564656423570978&set=vb.211424488869876&type=2&theater

Rays Blog http://mesoandme.wordpress.com/2013/10/22/tuesday-70/ he tok a great picture of the moon last night.

Living With Mesothelioma -My Diary- Rain!!! Rain !!!

I have been very lazy the past few days.

I  have done housework bit by bit. I do a room out and then sit down so it has taken 2 days. Well its been raining so no problem to stay in as the rain is so Monsoon like. I pity the people who are out in it.

Ray did take Louis but we flood so easy here in the lane as the motorway goes up a hill and they never thought about the way the rain will flow back down the hill and swamp our lane. Always remember when we first moved down here and my brother went through the flood. He turned round and went back and then went through again, he said he had never traveled through water like it. Do men ever grow up ?? xx

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You cant see the hill in the back ground as it is covered with Mist and Rain

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The garden is getting a good watering and the road out the front is like a river, is this going to be a very wet winter ??

Its better than the fires they have in Australia I have been talking to my Australian friends and they are all safe but this is a huge fire. 200 miles how bad is that,

A New South Wales Rural Fire Service volunteer puts out a spot fire in Bell on 20 October 2013

Melissa White assists her sister Christie Daschke at her home in Winmalee destroyed by bushfire on 21 October 2013

Amazing how it runs on the ground and leaves the tops of the trees.

We found this when we were in the fire at La Nusia in Spain and got caught in the Benidorm Mountain Fire.

I hope everyone keeps safe.

http://www.bbc.co.uk/news/world-asia-24579099

I cant wait now to hear my results of my scan as my right lung is painful and I have a searing pain at the bottom of my left Lung. I have started controlled pain relief.

When Im on Chemo I’m mainly pain free. My legs are very sore well mainly my left one. The two big toes throb -I expect that and in the mornings my ankles are tiny at last so the fluid in the legs is rescinding a bit.

But the lung area is naughty. I need to get my mind on something else and not dwell on the pain.

So I need to hear that I have stable and the pain is the tumour lifting off and the nerves aren’t squashed anymore.

I didn’t expect to get flashing pain in my Right Lung– that can clear off.

I had a person say I’m not terminal anymore as I have lived 4 years now. Oh how wrong is that . Its Chemo  that has helped me to beat Meso so far. If I hadn’t had  Chemo the Doctors diagnoses would have been right. This has come about because Doctors are still saying a patient has 3 months to live. I wish they wouldn’t do that and instead say we can prolong your life with Chemo treatment. I know that still isnt good news but it gives you hope you could be around for when the find the cure. They have found the DNA that is in a body of a person with Meso so to find the Meso DNA is a a start . Please give the who;s story and give people hope.

Only 1% reach 5 years so we have seen so many Mesowarriors pass on I wish that could slow down now.  The fact Im one of the 1% is put down to how fit I was at Diagnoses. I dont feel fit now but I do try.

Rays Blog http://mesoandme.wordpress.com/2013/10/20/sunday-63/

Living With Mesothelioma -My Diary- I have had my Flu Jab

Another Lazy day yesterday except I did enjoy cooking the Lunch and dinner. Rays Camera came to we took some photos to try it out .

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I love the horses that are kept out on the Salt Marshes they do come over to greet you for food but of coarse you shouldn’t do that

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The Blackberries are still waiting to be picked and have been very plump this Autumn

I did drape the dragonfly lights better than Ray had them so that they are all around the herb garden, and I did pick some herbs. The smell of Mint, Chives  and  Parsley was divine as i cut the leaves off. I used them in a salad with Greek Cheese and Olives for lunch.

Dinner was Salmon and Rice with Vine tomatoes.

So I watched my soaps and have to admit Emmerdale was the best acting I have ever seen. They deserve to win all the prizes this year.

Corie was a bit to like what Ray and I are going through as Haley travels on the path of cancer. It was about Living wills and be helped in suicide, something I couldn’t even think of  such a thing.

This morning we had to go and get our Flu jab and what was surprising was they were offering the Shingles Vaccine. I hadn’t booked that as I didn’t know, why dont they tell you when you book the Flu Jab.

The surgery waiting room was full, but I expected that. We didn’t have long to wait before 1120,1125,1130 were called out and we all stood outside of the waiting rooms. Ray and I went into together and we were jabbed. She wished me luck with my scan result on Thursday which was nice of her. Seems there is so many people waiting with me for the good news.

We have lost one a day of the Mesowarriors so the feeling of standing in a line has hit me again. I cant keep missing the call can I. Im doing everything possible to miss it. The Mediterranean diet is lovely and very tasty with all the herbs in the cooking. and loads and loads of tomatoe.

We came out and I went to my butchers to buy  Louis some Kidney, heart and chicken roasties for us. It was raining so we were glad to get back to the car and home for a coffee and lunch.

We have snuggled in and I will cook the roasties soon, they are chicken breasts wrapped in Bacon and stuffing inside.

Anther day done almost but we will watch Telly tonight and a couple of films.

linda auss

You cant blame Linda for going out to Australia can you. She is with her family at last and she will be so happy, something she deserves so much .

Rays Blog http://mesoandme.wordpress.com/2013/10/18/friday-68/

Living With Mesothelioma–My Diary- (New Camera -Again ) Bye to Linda and I really do understand the Mesothelioma Bill and will fight it !!!

It was a quiet day yesterday as I waited and waited for the District Nurse. She usually comes at 8.30am but not yesterday.

I got the lunch and sat around with nothing to do.

Rays camera came and we are very happy with the results.

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Thats the Dragonfly lights round the Herb Garden

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My dear chair be the fire So comfortable and every time I sit in I just have to shut my eyes ha ha !!!

The nurse did come at last and she explained she had to take and then pick her Dog up from the vets as he had a lump. He is a springer spaniel and they are prone to lumps .

We said how dogs seem to suffer from Cancer nowadays as well but she is hoping it was a fatty lump. So she cleaned my PICC Line for what we hope is the last time. She said she had never known anyone be so positive and fight like I have. (Really its only because I never really talk about what is happening inside to me) The pains that you start to think oh dear! has it got  hold.

You do get a lot of pains shooting all around the lung and now I say Lungs as the right is giving off pains now. The voice has changed again as I heard in my Radio Interview. I said to Ray I sounded just like my old Aunt did.

I at long last have grasped the New Mesothelioma Bill. The Government pay out within a week a Diffused Payment to all sufferers from funds set up in 2008. We get that payment within a week of filing out the forms and claiming as our Doctors evidence is enough. Those that can sue and win pay back to the government, as you cant have 2 compensations . The Bill wants us to go to them with proof I cant sue, which will take sometime and there for we would have to wait for our Diffused payment. A lot of people would die within that time. So I can now see why we have to fight the New Bill.

Linda Thomas

Well our dear Mesowarrior has flown at 10pm last night to start her new life in Australia and we wish her all the luck in her new home.

Dave Thomas

Lindas Husband Dave died from Mesothelioma

Linda Wrote in ADAOs Web Page —

How has asbestos changed your life? Dave and I had gone to Australia in March 2009 to see our new grandson after our son and daughter-in-law had emigrated only a few months before. We had our house on the market, as we wanted to buy a smaller property near our daughter and free up some money to buy a property in Australia. Dave had developed a slight cough. After constant nagging from me, he went to the doctors twice, but they just dismissed it. In August, the cough had gotten so bad that he couldn’t sleep in a bed and he started to lose weight. In my heart, I had a bad feeling, but you try and block it out.

We went to the doctors together this time. She sent Dave to have an X-ray, and they found his lung was full of fluid, and within 6 weeks, he was diagnosed with mesothelioma. To sit there and be told by a doctor that it is terminal in front of your two children –  well, you try and hold it together for them. The emotions you go through – well, I don’t think I will ever get it out of my head. Dave was devastated.

He had six chemos and he was so ill with the chemo that we lived and died in A/E. He would be so emotional all the time. I’d never seen Dave cry. It tore me apart. He would stand at the window and watch all the builders go by and just sob. He was such a strong man. Meso tore him apart. He knew we were not going to grow old together, and he knew he was not going to see all our grandchildren grow up, which devastated us both. I tried so hard to be strong for all the family, not breaking down in front of them, but meso took my man, the love of my life. How I hate mesothelioma.

http://www.asbestosdiseaseawareness.org/community

Rays Blog http://mesoandme.wordpress.com/2013/10/17/thursday-65/