My Guest blog is from Australia as they are nearly into 2015 —Happy New Year Australia

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As we go into 2015 I want to say a big thank you to all the readers of my blog. I hope I have bought help to those that have been diagnosed with my story as I live day to day through the disease.

I have also had wonderful help from you all, so now and again I will do a guest blog from these people that work tirelessly to bring support to others through out the world.

Some medically and some in the jobs that they do to help.

My first one is Bernie Banton in Australia.

We met rod as he nursed Julie through the awful journey she followed.

http://juliebastian.wordpress.com/2011/01/

I guess a first blog should start from the beginning – well – not the very beginning – but at least I should give a bit of background to why I am actually blogging in the first place.  With some encouragement from Mavis and Ray Nye from the UK (her book Meso Warrior) and some technical help from my son, Scott – what would I do without him – here it is.

In early July 2008 I went to the Drs with a list of very vague symptoms.  They were so vague that I hesitated to even list them – but I did and my GP seemed concerned enough to send me for an ultra sound.  A few days and a CT scan later I found myself  looking at some very alarming words on the radiologists report.  I always peel open the film folder and sneak a look at the report – of course very neatly re-sticking it all back up.   After some googling I was really no better off – just more worried.  I initially didn’t tell Rod (my partner) anything.  My thoughts – no need for us both to be worried.    Now, however, it was time to ‘fess up’ what was happening.    Now we were both worried.   After more scans we had a referral to Monash Oncology Unit.  The word “Oncology” sent shivers up my spine.  Surely this was some kind of a mistake.   My tumours – one laying over the top of my liver and the other low in my pelvic area, however,  were clearly not supposed to be there.  I also had an “abnormality” in the pleura.  I had a fine needle biopsy followed closely by a PET scan.  The biopsy showed I had mesothelioma – a cancer which came from being exposed to asbestos.    I have never worked with asbestos so the exposure had to be accidental.    My father was a refrigeration engineer and worked in and around boiler rooms where pipes and machinery were lagged with asbestos used as an  insulating agent.  This had to be my contact.  As a teenager I used to go down to “The Freezers” as we called it, with Dad and follow him around as he checked temperatures etc. – no doubt brushing against the lagging as I passed through the machinery.   Dad’s clothes would also have been covered in it, so that is another point of contact.   Little did I know way back then the deadly end game that was set in motion.     It was to stay dormant in my body for some 45 – 50 years.

In very quick succession I had a pleuradesis (the talc operation) in August 2008, and then a debulking of the pelvic tumour with a small bowel resection (Sept 2008) as the tumour had almost blocked off a part of my small bowel.    With almost indecent haste  (October 2008) I started chemotherapy with Cisplatic and Alimta .  This however was very necessary, and after only 3 doses the abdominal wall tumour had reduced dramatically and the progress of the cancer in the pleura was halted.   A period of 6 months of stability followed, however in June 2009 I was back to chemo – this time Carboplatin and Alimta – as the abdominal wall tumour had started to increase in size.  The pleural meso was still stable and to this day appears to be have remained stable.    After 4 doses of Carboplatin and Alimta  followed by 6 of Alimta alone the abdominal wall tumour refused to be subdued and it was decided it had to be removed surgically.   In April 2010 out it came.

Because this operation required a fairly large mesh repair, I couldn’t have chemo for a number of months – but it was a calculated risk that we were happy to take.  Chemo had pretty much reduced all other tumours scattered in the abdomen and we were hoping this would remain the status quo.    This was not to be.  After a PET scan in September, 4 new “hot spots” were identified and I recommenced chemotherapy.  Three doses and a scan  later there was still some slow growth so the chemo was not working.

This brings me up to date – phew !!     I am currently waiting to see if I get onto a clinical trial at the Austin Hospital of the drug BNC105.     My interview to see if I fit the criteria for the trial is on the 8th February.    This is one test I do NOT want to fail so I am keeping myself positive.   It has brought out the pioneering spirit in me and I so want to have the chance to try out this new drug.   I believe there were 60 meso patients involved in a trial of this drug in 2009, but I have no information on the results, but I feel sure it must have been promising as Dr. Ganju (my Oncologist) would not have referred me otherwise.    I am, however, pragmatic enough to realise that if it doesn’t work out, then there will be something else for me out there.

So there is my “bit of background” – it has taken 841 words!!  This neat blog page counts the words for me !!

I will keep you posted…..  Cheers for now… Julie.

Her journey went through to her sad death.

Rod throew all he had into the Bernie Banton Foundation and carried on the good work.

In his own words ————————————————————-

On behalf of everyone connected with the Bernie Banton Foundation, I would like to wish all a merry Christmas and a really successful 2015.

2014 has been a momentous year, in almost every way!

On the support side, it saw the formation of our new support arm, the MARS (Mesothelioma and Asbestos Related Support) Network; it has also seen the passing of many warriors. Not one of them departed without a fight; they were simply over-powered by the ravages of asbestos related disease. On a personal side it has been a truly devastating year, so much loss, not only worldwide, but also from our own ranks.

On the asbestos awareness side, it saw the launch of the foundation’s Mobile Asbestos Education and Awareness Unit incorporating Stan’s Van. The concept is simple, we are taking the foundation and awareness of the dangers of asbestos to the people, rather than expecting them to find, or come to us, encouragingly, our phone traffic is telling us we are on the right track.

The foundation is also actively working in with a number of other Australian anti-asbestos support organisations to further our common objectives. Excitingly, worldwide we are forging ahead with consolidating existing alliances, and creating new ones, with international like-minded organisations. With this in mind, we have formed a new division, ‘Asbestos Awareness and Advocacy Australia’, which incorporates ‘Asbestos Awareness Australia’ and ‘Asbestos Advocacy Australia’.

From an asbestos point of view, 2014 in Australia will be defined by the Mr Fluffy loose-fill insulation crisis in the ACT and NSW, along with resultant ground breaking legislation brought in by the ACT Government and Worksafe ACT, to deal with the crisis. The NSW government came in late, but would now seem to be pro-active on the issue. The other ‘asbestos’ notable in 2014 was ASEA’s First International Conference on Asbestos Awareness and Management, held in Melbourne on the 16-17 and 18th of November, proudly (as an Australian) this was an outstanding success.

In November we received notification of support from the Asbestos Safety and Eradication Agency (an Australian Commonwealth Government agency), by the way of a grant that will allow the foundation to exhibit at the HIA Melbourne Home Show, the Shepparton Home Show (both in April) and the Adelaide Master Builders Show in July. Like all other similar organisations, the foundation is actively courting sponsorship, or support to fund the day to day operations of the organisation.

Importantly, 2014 also saw the advent of the foundation’s first international sponsor. We are fortunate to have Verastem, one of the worlds foremost leaders in mesothelioma treatment research, who is running the ‘Command’ mesothelioma trials worldwide, come on board as a supporting partner. This sponsorship came about due to our close collaboration with the USA based mesothelioma support organisation, Mesothelioma Applied Research Foundation and the UK based Mesowarriors, which is led by the wonderful mesothelioma sufferer, Mavis Nye. We are blessed to have such close connections with these two organisations, which I believe are without peer in their respective sectors, and countries.

We also saw a new director, Mary Wills, grace the foundation’s dynamic board of directors. Mary has been touched personally by the horror that is asbestos, having seen her Dad succumb to asbestosis. Mary (and her family) is, and will continue to be a tremendous asset to our ranks.

In closing, I thank all who supported the foundation throughout 2014, and sincerely hope 2015 brings you success. To those living the journey brought on by asbestos related disease, I know from personal experience, there is nothing for me to say, except to ask you to maintain as much love, faith and hope as you can. For those who are living through the loss of a loved one, please know you are not alone, even though for much of the time, it must feel you are.

With love, faith and hope.

Rod Smith
Operations Manager and Support Coordinator
Bernie Banton Foundation

Wishing all our Australian friends a very Happy New Year and to those that have lost I hope you can travel through 2015 remembering the Happy Moments and the joy you had with your loved ones xx

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Living With Mesothelioma-My Diary- MK 3475 Drug Day At the Royal Marsden

Its been a busy few days since returning home from Christmas Holiday.

I have this urge to clean the house again as my strength returns. So Ray and I have been working together. he has put a new blind up in the kitchen and a bathroom cabinet up to hide all my soap and things.

Varese Single Door Mirror Cabinet: Image 1

All the cleaning done we are happy again

Frosty Morning Air 2 by welshdragon

‘Twas a cold and frosty morning
Just as sun was rising
I saw my true love
Waiting there for me

Royal Marsden day today. Drug day ahead. We couldn’t sleep and yet the alarm had to wake me up.

I couldn’t believe the frost this morning at 5am. So very white and thick. Everywhere was covered a very white world as we went down to the car. Ray and I worked together to get all the ice off. It was so dark that as we set off it was hard to see the black ice on the lane. We made it safe to the Motorway where they had salted, so we traveled safely.

There wasn’t any traffic and we got there in 1.5hours. That was wonderful.

After booking in I was told that I wasn’t down for treatment as they had added it to Fridays Scan Appointment.

Errr no I wasn’t told that. Oh no please don’t send me home. They pulled all the stops out and fitted me in for a scan and the pharmacist said they could make they drug up Oh thank goodness. I didn’t care how long I waited as it freed us from coming back on Friday.

The scan was done in fast time as well. The lady doing the scan said they had all heard of my results as well, I said I wanted to see it 60% this time. So we shall have to see.

I went back to the ward and my bloods were taken. When they were done the doctor had me in and said my Kidney was playing up. I must drink 2 litres at least per day of water. NO NOT COFFEE ha ha !!!

I don’t drink enough water. I hate water. But I will sneak some orange into it. I will also drink Cranberry Juice

Cranberries have been recognised for centuries for helping maintain urinary tract health. Cranberry has a strong natural antibiotic effect on the urinary tract.

The Doctor said as I have only one kidney I must keep it healthy.

So we sat in the waiting room it was 10.30am.

Our Son and DIL came and took Ray out for lunch in Sutton. I just read magazines and waited. The canteen was on skeleton staff as it is still Christmas week but I didn’t want to go there as I didn’t want to miss my drug.

They came back and we chatted for a while and the family left so we were alone again. At last at 3.15 the drug was ready.

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Into my veins to do its wonderful work.

So we were free to travel home. We had driven there in the dark and we had driven back in the dark.

But tomorrow is New Years Eve —2015 is on its way I hope the results of my Trial are published soon.

Merck has also signed agreements with rivals Pfizer, Amgen and Incyte to test MK-3475 in combination with other oncology drugs across a variety of cancers. and the results are doing so well.

Pembrolizumab (Trade name Keytruda formerly lambrolizumab; also known as MK-3475) is a drug marketed by Merck that targets the programmed cell death 1 (PD-1) receptor. The drug is intended for use in treating metastatic melanoma. Pembrolizumab was invented by Gregory Carven, Hans van Eenennaam and John Dulos at Organon Biosciences which later became Schering Plough Research Institute and then Merck & Co.

On September 4, 2014 the US Food and Drug Administration (FDA) approved Pembrolizumab as a breakthrough therapy. It is approved for use following treatment with ipilimumab, or after treatment with ipilimumab and a BRAF inhibitor in patients who carry a BRAF mutation.

Rays Blog http://mesoandme.wordpress.com/

Living With Mesothelioma -My Diary- So this was Christmas.

Living With Mesothelioma -My Diary- So this was Christmas.

We have had a really super Christmas. Everyone is dumbfounded that Im still here and really looking so well and my body is recovering from the traumas of Chemo from last Christmas as well.

Spent with the family the presents have been flowing between us.

The funniest being Terry adores lambs and goes to a farm every year for the lambing so my whole theme was Sheep.

One for the garden.

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It was great watching him open them up and laughing.

Our main present was one we all shared and that was to go to Disney on Ice at the 02 for Boxing day.

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It was so great if a little chilly.

We had traveled in the rain through the streets of London that were packed with late shoppers. Dont they ever go home although I suppose tourists and Audiences for the London shows were also trying to get through. We got wet walking from the car park to the dome.

It was great to see all the children gathered to see their Walt Disney characters.

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The crowds there had a great time.

We then went to the Brazil Restaurant and had an unusual meal. One of those eat as much as you like. Phewww !!!

Meats that come to the table to be calved.

Hot dishes

 

Cold dishes.

So many to choose from.

We went home very full indeed.

We traveled home today and the M25 was one long car park. We weren’t so bad as those on the west traveling side.

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Goodness knows when the other side got to their destination.

That queue was from the M4-M3-A3-A23 A22 A26 and right around to the Dartford Crossing.

Then there was chaos on the railway as the station reworks have taken to long. Anyone that stayed in doors was doing the right thing.

So pleased we were taking our Grandson to Maidstone instead of letting him travel by train. He would never have got there otherwise.

So we have had a wonderful Christmas. Some wonderful presents. Dragon flies and butterflies have been the theme this year along with home made fudge and sweets–Thank you all those that have sent me presents I have enjoyed opening everyone. Even Louis got balls that light up when thrown and a flashing collar that he loves wearing as he is afraid of the dark.

Now its back to the reality of going to the Marsden on Tuesday and getting my drug that I hope sees me through to enjoying next year’s Christmas.

Though of coarse there is one last thing and thats to enjoy New Year.

 

 

 

 

Living With Mesothelioma. My Diary. Ready for Christmas We made another Year my friends. Thinking of those tonight that have left us in 2014

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All the hard work is down now. All the shopping in and presents wrapped.

Cards from so many friends on the shelves. So many cards are missing this year as more family and friends have passed to heaven.

But I have kept busy. Steaming all the carpets this morning and making sure everything is clean and shining for Christmas.

We did g to Tesco and it wasnt as mad as I thought as I dashed around and Ray took Louis for a walk.

There were you people packing for Charity so I put money in the bucket, but I forgot the dogs chews so I dumped my shopping in the car and went back to shop and that was more money for the bucket.

It was noisy so I was glad to get out and back to the car again.

I have been having a sad think of 2014

So many Mesowarriors have gone Im always thinking of them. Also the ones that are having a bad time of it and those in Trials

Jan Eagerton who was waiting for Immunotherapy to arrive in the UK and it came to late for her miss our chats and being told to rest xxx

Tess Oh Tess xxxx

My dear dear friend I miss our chats and walking on the seafront, and lunching with your lovely husband Alan. Alan worshiped you.

A heavenly message to all the Mesowarriors that we have lost 2014 so many and  I miss them all.

We fight for Awareness and will carry on fighting in your name.

We have so many Mesowarriors in Trials but we are still here and have got through 2014 and will walk together in 2015.

Jimmy who is a fighting Warrior on a trial at St Barts  Good Luck xxx

 

Richard who is in a trial at St Barts Good Luck to you as well

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Steve who has been very ill as he now has radiotherapy  but I hope he manages a good Christmas

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Jim who is really doing it rough but he has seen his daughter marry and was able to walk her up the aisle in his red shoes. –I love you and your music Jim xxx

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Living With Mesothelioma -My Diary- Finished shopping for Christmas and Vivien Westwood made a protest.

The weather has been so mild the last 2 days which means we have been able really get everything finished for Christmas.

Im feeling good and looking forward to Christmas with the family.

We had to go out to get my Toffee Vodka but the shops are not stocking it. Why ??? I have a great recipe for it though.

http://www.rosalilium.com/2011/10/how-to-make-toffee-vodka/

1. You will need a bottle of vodka (the cheap stuff is fine), a packet of Werther’s Original and a sterilised Mason Jar.

Toffee Vodka Ingredients

 

 

 

 

 

 

 

 

 

 

 

http://www.standard.co.uk/news/politics/vivienne-westwood-and-son-attempt-to-deliver-asbestos-to-david-cameron-in-protest-against-fracking-9933525.html

Fashion designer Vivienne Westwood  (we went to the same school – Rochester Technical School )attempted to deliver a parcel of asbestos to David Cameron.

The 73-year-old and her business man son Joseph Corre were at Downing Street campaigning about the potential health risks linked to fracking.

Mr Corre, whose father Malcom McLaren died of cancer due to asbestos, and his mother said the technique of extracting oil and gas could become “the next asbestos or thalidomide”.

They turned up outside the gates of Downing Street with a Santa Claus wearing a gas mask to deliver a box of asbestos – but police did not allow the “present” through.

But I do hope there wasnt any Asbestos in the gas Mask the Father Christmas is wearing.

It was used in the filter in the wartime and it is found in the gas masks in museums etc etc.

But at least Asbestos is in the news and maybe something will be done about this horrible material as we have lost anothe Mesowarrior today.

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I light the Mesowarriors Candles for Andrea Bayles-Gungabissoon Brave and courageous warrior.and a wonderful father and husband and Grandfather
He lost his battle today, having had both Mesothelioma and Lung Cancer which is a rarer thing to happen.

The angels looked down from heaven one night
They searched for miles afar,
And deep within the distance
They could see a shining star.

They knew that very instant
That the star was theirs to gain,
So they took you up to heaven
Forever to remain.

Look down on us from heaven
Keep us free from hurt and pain,
You’ll always be within our heart
Until we meet again.

This really hurts as Andria was in our Calender and is one of the core of Warriors that were around Debbie. He was ill when I started this journey and so I feel theirs so badly.

I did tell my Doctor I was suffering from Survivor guilt. When people are in, and survive a train accident they get survivor guilt and that’s how I feel. She wanted me to talk to someone but I said no Im just telling you how a patient on this drug feels. Gosh I have the support of the Mesowarriors they are all I need. we talk about all out thoughts and fears I also write all my thoughts and fears on hear. I dont need a Psychiatrist. I self Anallise anyway.

I had a email :-
People over 65 with cancer in the UK experience poorer outcomes than those in the rest of Europe. This is unacceptable. Macmillan Cancer Support has established an Expert Reference Group to investigate how we can change things.
It is important that the views of older people directly influence the work of this group. Macmillan is working with the Young Foundation to develop ideas for how to do that. The Young Foundation is therefore looking to interview people who are over 65, living with cancer and interested in the topic in January 2015. All interviews will take 30-60 minutes, and will be confidential with no names or personal details to be shared with people outside the research team. The results of these interviews will help influence the work of the group.

If you are interested in hearing more about this work or if you would like to be involved, please contact

You know me I get involved and answered of coarse so another email came through :-

Dear Mavis,
Thank you for your email and it would be great to have your involvement and schedule an interview with you for this project.
I am copying in my colleague Peter who will be conducting the interviews and will be in touch to schedule a convenient time.
In the meantime, please do not hesitate to contact me should you have any questions.
Many thanks,

So that will be interesting in the New Year.

Rays Blog http://mesoandme.wordpress.com/

Mesothelioma -My Diary- Drug Number 14 Mk3475. Sad News written in Steves Blog

It was so dark and frosty as we set off this morning to the Royal Marsden.

The moon was shinning in a clear sky which meant that the car was heavy in frost. Jack Frost was out

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The traffic wasnt to bad and Dawn came as we got to the M25 as the sun was waking up.

Arrived and passed in my book to the  Appointment Coordinator as she had said she was interested in my story. Anther Nurse said she wanted on and would buy it which is great.

I should have taken my Calenders in but they see enough of me without my clothes on.

My bloods were taken and we chatted to the doctor but everything is doing well.

My bloods came back with a perfect result. So everyone is happy.

Ray and I went for a coffee and a cake and then back in the waiting room I fell asleep. I couldnt believe that. I woke up with a start ad Ray was looking at me. “Have i been Snoring I asked in terror of having shown myself up.

He convinced me I hadnt.

The Sister said to sit in the ward and we waited for the drug. She appeared to tell me at 2pm they said it was being made up and at 3pm they said There was a problem. Oh no ! I was scared it was something cropped up in my bloods. But no it was that the Pharmacy had been made to have an Audit and there was a delay. They will be making it today though. So we had another drink and a plate of chips as I was hungry at this point.

At last at 4pm I finally saw my drug and it was entered into my body via my PICC line.

In the Restaurant they had put the lights on the tree that they were starting 2 weeks ago.

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There are trees all over the hospital so it looks very pretty but when we came home the front of the building was covered in Lights. I will have to take a photo next time I go.

I came home to read Steve’s sad news. Im ot happy and I didnt want to read such a negative blog. Everyone knows how i used to nag Debbie to be positive well I feel the same with Steve.

I know he will have a great year and will live life to the full. Bless him.

I put it here to honour a very brave Mesowarrior who was diagnosed in 2009 as I was and has always shared with me his ups and downs through the blog Linda has written.

A guest Blog —— Steve Wride

Five and a half years, and a small number of months

Five and a half years: looking backToday is exactly five and a half years since Steve found out he had mesothelioma and was told he had six months – maybe a year – to live, by the doctor who gave him the news.  Luckily, Dr T (the consultant we saw subsequently) told us not to give too much weight to the statistics – individual circumstances vary greatly, as we were to find out.If you have read the treatment timeline posted last week, you will know that since diagnosis Steve has taken part in three early phase clinical trials, had one standard chemo regime, two radiotherapy regimes and one surgical procedure (pleurodesis).

2009 Radiotherapy

By my rough calculation these treatments, plus the time it takes to recover from side effects, have effectively taken about a year and a half out of our lives since then, leaving us with four “good” years during which we have enjoyed life to the full – albeit with the roller coaster of emotions associated with his three monthly assessments, scans and X-ray results.

So what have we done during these good times?

  • tried some new experiences, including floating over the landscape in hot air balloons; doing a short but exciting circuit in a helicopter; skimming the waves in a RIB (Rigid Inflatable Boat); looping the loop and other aerobatic manoeuvres in a light aircraft and trying our hands at clay pigeon shooting
Steve and the Chipmunk August 2010
  • been very sociable: meeting up with friends in the UK and abroad for special occasions, such as anniversaries, birthdays, house and garden-warmings, a wedding (and sadly, several funerals) and also simply to enjoy good company in our home, theirs, or on holiday
Birthday lunch March 2012
  • been travelling together abroad, including trips to Spain (Bilbao, Madrid, Toledo, Valencia); Italy (Venice, Rome, Siena, Pisa, Lucca, and rural Tuscany); France (Paris, Avignon, Arles, Marseille, Carcassonne, The Camargue, the Cevennes, the Luberon); plus Brussels in Belgium, Santorini in Greece, Amsterdam in Holland, Budapest in Hungary, Heidelberg in Germany and Marrakesh in Morocco
Marrakech May 2012
  • had fun visiting family and friends and exploring the UK, including trips to Wales, the Lake District, Yorkshire, Derbyshire, Suffolk, Norfolk, Sussex, the West County and numerous visits to Manchester, London and Bristol
Yorkshire April 2011
  • enjoyed some excellent sporting events, including cheering on the England team in person at international rugby and cricket matches; watching motor sports including the Goodwood Revival and Festival of Speed, Silverstone classic car races and Prescott Hill Climb; supporting our friend Rob in the Brompton folding bike world championships; having a bit of a flutter at the races, including witnessing wonder horse Frankel win his last race unbeaten
Rome England v Italy 6 Nations Rugby February 2012
  • indulged our passion for photography and in the process achieved our Royal Photographic Society Associate distinctions; had works selected for exhibition in venues around the UK and abroad; won awards and gold medals in various competitions and salons; had features in photography magazines, work published in photography books and the UK national press (not forgetting the local paper in Heidelberg!)
March 2010
  • helped our kids work on their respective homes: knocking down walls; helping assemble flat pack furniture; painting and decorating; laying floors etc, as well as creating a guest bedroom and carrying out a complete garden makeover in our own home
Helping with the kitchen renovation, London March 2013
  • enjoyed a number of exhibitions; visited National Trust properties (not forgetting the tea rooms!); looked over London from the top of the Shard and Orbit at the Olympic Park and over Portsmouth from the top of the Spinnaker Tower
View from the Shard May 2013
  • we even started our own business, which is still rolling along albeit very slowly at the moment due to Steve’s health issues
That’s quite a lot to cram into four years, but Steve was feeling good, no pain or breathing problems and we made the most of it.  Sadly, that’s no longer the case….
A small number of months: facing the future
This is not an easy post to write.  We have been living with this knowledge for a few weeks but only now feel able to share it with you, after telling our children, other family members and some of our very close friends.  You may have already guessed what is coming, especially those who have been through or are going through something similar.
If you have been following the blog, you will be aware that Steve’s health started deteriorating slowly from October 2013 when his meso started to progress again after initial shrinkage with chemotherapy.  This deterioration has accelerated rapidly over the last few months.

16 December 2014 – 5.5 year survivor

The cancer has grown through his chest wall and the lump has been painful, although thankfully that pain didn’t last long and now seems to be under control.  It has also spread to his liver.

He lacks energy and naps during the day.  It’s hard to know at this stage whether that is the cancer progressing, a continuing side effect of the last drug trial or the cumulative impact of radiotherapy which has yet to peak.
He gets breathless on exertion, but is still able to walk some distance as long as he paces himself.  However, it is a relief to have a blue badge which gives us more options when looking for somewhere to park the car.
After being “0” (i.e. asymptomatic) for over five years, his “performance status” is now considered to be “2” (ambulatory and capable of all self-care, but unable to carry out work activities, up and about for more than 50% of the day).
He has lost a significant amount of weight in recent months and now weighs in around 55 kilos; losing more than 5% of his weight within the last six months – a clear signal that something is very wrong, although at the time we did not appreciate what a serious sign this is.
However, a new word has now entered our vocabulary: “cachectic”.  Wikipedia defines cachexia as the loss of body mass that cannot be reversed nutritionally. Even if the person eats more calories, lean body mass will be lost as a result of fatty tissue and skeletal muscle being depleted.
It is considered to be a positive risk factor for death, meaning that if a patent is cachectic, the chance of death from the underlying condition – in Steve’s case mesothelioma – is increased dramatically.  Cachexia is often seen in end-stage cancer; 80% of patients with terminal cancer are cachectic.
We are doing what we can to keep his calorie intake high with a change in diet to full fat milk, cream, butter, lots of sweet sticky things as well as nutritious food which is high in calories, like nuts and oily fish.  He is taking Complan as a supplement to his regular meals and medication to help speed the passage of food through the gut so he doesn’t feel bloated after a small meal but can carry on eating.
However, there is no getting a way from it; things are not looking good.
Steve has been through a lot this year, with two drug trials and now radiotherapy.  At the moment, he can’t contemplate having more treatment that would make him weaker or be likely to cause side effects that would severely compromise his quality of life, as has happened earlier this year.  In any event, he is not considered strong enough to take part in another clinical trial in his current condition.
When asked what we could expect if Steve had no further treatment following the completion of radiotherapy, the doctor said – as you would expect – that’s it’s impossible to predict with 100% confidence.  However, his best guess is that Steve’s life expectancy is in the region of “a small number of months”.
You will know from reading about the last five years or so, that we have not been unduly concerned about statistics and survival rates but have tried to adopt a very positive attitude about his cancer, living with it, not dying from it.  He is one of the very fortunate 8% of mesothelioma patients still alive more than five years post-diagnosis, so has already helped change the statistics and extend the tail end on the right side of the median curve.  However, given the big picture, the way Steve feels and the evidence of our own eyes – lumps and weight loss – it seems likely that the doctor is right.  This will probably be Steve’s last Christmas.
We have not lost hope….there is still a little glimmer that could be fanned into a big flame, in the right circumstances. Although the side effects of radiotherapy are likely to make him feels worse before he feels better, he may yet improve in the New Year.  In that event, he may feel up to re-challenge his meso with pemetrexed or be eligible for another drug trial.
However, it looks like time is short and we are not holding our breath.  For now, the emphasis is on ensuring he remains pain-free and keeping up his body mass.  At present, we are managing to do both those things, which is encouraging.  And after shutting ourselves away from friends for the duration of the last drug trial and beyond, we have now rediscovered the pleasures of being in the company of good friends, even if fatigue rules out late nights, big parties and more energetic pursuits.  About time we started acting our age anyway….
I hope that reading about the good times we’ve had since diagnosis in June 2009 helps balance out the news in the second part of this post.  It has helped me put things in perspective and as many people have pointed out, we have some wonderful memories to help us through the coming months.
When speaking to us, no one has yet used the phrase that we should be thinking about “quality rather than quantity” of life, but it’s the elephant in the room.  We shall just have to see how far we can make a small number of months stretch, and ensure that we make the most of what time Steve has left in the best way possible for how he’s feeling at any given time.
Big hugs to all you wonderful people to say thanks for your support and good wishes, and to all the meso warriors, their loved ones, and those who have lost their loved ones   xxx

– See more at: http://doingsomethingpositive.blogspot.co.uk/2014/12/five-and-half-years-and-small-number-of.html#sthash.d0IRD669.CIe4KtFr.dpuf

I know he will live life to the full next year 2015 I will hang onto him xx

rose and butterfly

 

 

Rays Blog http://mesoandme.wordpress.com/2014/12/16/tuesday-122/

Living With Mesothelioma -My Diary- Christmas is coming

The weekend is passing so quickly and Christmas will be upon us soon. One more drug day on Tuesday and thats it I can really think of Christmas.

My young brother and his girlfriend came yesterday for the annual present swopping.

I gave them a calender each so there was a lot of ooo and ahhh’s as they looked through. It has my elder brothers approval so i wasnt worried about the younger, he isnt so critical.

Now all I have to worry about is my Grandson as I have given him one for Christmas. I can see a very red face when he realises its his Nan.

My young brother had bought me plants for Christmas so he was worried about them drying out. When he went I opened them up and they were so nice .

But one was a Bonsi tree. Oh dear  have to make sure I don’t kill it. It has taken ages to grow to its size but  could kill it as Im like that.

So they are on the table now and looking good.

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I had a lovely new glass dragon fly from Jan Westen so lovely.

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Louis has demanded his walk of coarse but the weather is very cold that wind has been bitter today. I forgot that at 2am we had a lovely sky to see the meteor shower. 1 every 4 minutes here in the south. Oh well there is always next year.

I was to snug in the bed.

Mind you today I had a right fight changing the bed. A fight with the duvet and cover. sometimes I just do not do it right and  get so cross. I did conquer it in the end.

Rays Christmas present was delivered yesterday and he now has a wardrobe of new clothes. I held up his old tee shirts and said we can take them to the clothes bin at Tankerton. The look of disgust on his face. Why is it so hard to get him to part with older clothes. Well I won this one, they are in a bag ready to go but hope he doesn’t start putting them back in the drawers.

He wore is new jacket out as we went for a walk so that’s good, he likes that phew!!!

I was reading this link today and wondered if other Mesowarriors had seen this .

http://davidalton.net/2014/10/11/liverpool-conference-on-mesotheioma-and-the-law/

Question in the Lords on 3% Mesothelioma Levy – Liverpool conference on Mesothelioma and the Law – reply from Lord Freud

Posted on October 11, 2014 Updated on December 13, 2014

mesothelioma
Lord Alton of Liverpool to ask Her Majesty’s Government, further to the reply by Lord Faulks on 9 December 2014 (HL Deb, col 1710), what evidence they have for the assertion that a lack of good research proposals is deterring research into mesothelioma and that there are no problems concerning availability of funding. HL3669
†Tuesday 9 December at 2.30pm
†*Lord Alton of Liverpool to ask Her Majesty’s Government, following the decision of the High Court that the consultation on mesothelioma legal fees was unlawful, and the lack of new funding for mesothelioma research, what is their policy with regard to combatting mesothelioma and supporting victims.
Mesothelioma
Question
2.58 pm

Asked by Lord Alton of Liverpool
To ask Her Majesty’s Government, following the decision of the High Court that the consultation on mesothelioma legal fees was unlawful, and the lack of new funding for mesothelioma research, what is their policy with regard to combating mesothelioma and supporting victims.
The Minister of State, Ministry of Justice (Lord Faulks) (Con): The Government take the plight of mesothelioma sufferers seriously and are determined to improve their position. We have introduced significant changes through the diffuse mesothelioma payment scheme, established under the 2014 Act. By October 2014 the scheme had made 131 payments, resulting in £16.5 million being paid to sufferers or their families. The Government fully recognise the need to stimulate an increase in the level of research activity and continue actively to pursue measures to achieve this.
Lord Alton of Liverpool: My Lords, I thank the Minister for that reply. Does he recall that, during the passage of the Mesothelioma Act 2014, Ministers said that the levy on the insurance industry would be set at 3%? They said:
“Three percent. is 3% and we have no intention of moving away from it”.—[Official Report, Commons, Mesothelioma Bill [Lords] Committee, 12/12/13; col. 117.]
Why then has it now been set at 2.2%, representing a shortfall of more than £11 million? That money could have been generated and used to undertake sustainable research into a killer disease which will take the lives of another 60,000 British people. This is according to figures which the Government themselves have issued.
Lord Faulks: As the noble Lord will know, the Government responded to the amendment which he tabled during passage of the Act by saying that they were committed as a priority to helping to encourage research by the National Institute for Health Research. We set up a partnership of patients and carers to identify a top 10 list of questions for researchers to answer. The results were published yesterday, as he may know. We now feel that we have identified the questions and funding will be available if there are appropriate applicants. The problem with research is no longer—indeed, it never was—funding, but finding really conceivably successful applications.
Lord German (LD): My Lords, both the House of Commons Justice Committee and the judgment of the High Court concerning the issue of legal fees in mesothelioma cases are critical of the way that the government review was carried out. It was found to be premature and did not follow the rules of the LASPO Act. We know that the incidence of this disease will peak and then fall away over the years, as the 30 year-old Acts concerning asbestos are put into place and have an effect. Given that there will be a withering on the
9 Dec 2014 : Column 1711
vine of the numbers suffering this fatal disease, is it not now the time for this legal fees issue to be left alone and kept as it is, rather than coming back to it again and putting people through increased risk and increased delay?
Lord Faulks: My noble friend is right. We expect the peak to start declining and perhaps come more or less to an end in 2024. There is to be a review. There is no immediate timing for it but my noble friend is right in that the status quo is acceptable to the claimants. They are to receive damages. Research will continue, as I indicated, and the pre-LASPO regime for legal support will continue. This will ensure that lawyers are paid adequately, and we are told that they will not take cases unless they are paid adequately. The review will go on.
Lord Giddens (Lab): My Lords, I watched a member of my family die of this dreadful disease. There are massive advances in medical technology which make it possible, in principle, to find a cure. As the noble Lord, Lord Alton, has indicated, that could mean saving the lives of some 50,000 people. To do this we are going to need an integrated research strategy, with the Government in the lead, co-ordinating with industries and with universities. Where is this strategy? The Government’s approach seems far too piecemeal and far too limited to do the job that is needed.
Lord Faulks: As I indicated, the strategy is to ensure that the right questions are posed so as to elicit appropriate applications. The funding is very much there, but there is no point in having it unless it is directed towards research which can feasibly produce the result which, I am sure, everybody in this House wants to achieve.
Lord Wigley (PC): My Lords, will the Minister go further on that? There needs to be a certainty that the money is there but the top-level researchers also need to be aware of it so that the money and the level of the research capability are brought together. Is the Minister confident that that certainty now exists? What can be done to make sure that the best researchers in the land are aware of it and can get engaged with this problem?
Lord Faulks: I can do no better than quote what Professor Dame Sally Davies, the Chief Medical Officer and chief scientific adviser, said yesterday. She thanked all those who provided information and said:
“With their help I believe we have built a genuine consensus—and a real impetus. I hope the research community will now respond by generating new research proposals that will provide robust evidence to help people with mesothelioma”.
The Lord Bishop of Chester: My Lords, I encourage the Minister to answer the first part of the Question asked by the noble Lord, Lord Alton, about why the percentage of the precept was reduced from the promised 3% to 2.2%.
Lord Faulks: The position with insurers is that they have provided money. I will have to write to both noble Lords and the right reverend Prelate about what has happened to that particular sum. The question of
9 Dec 2014 : Column 1712
the use of research funds is difficult. We think that research funds should be spent in the most effective way, and we think that publicly funding research is much more appropriate than hypothecating against insurers’ particular sums.
Lord McKenzie of Luton (Lab): My Lords, would the Minister accept that throughout our deliberations on the Mesothelioma Bill the focus was on a 3% levy? It was 3% because the insurance industry insisted that beyond that it would have to be passed to consumers. By implication, if the levy is now 2.2%, presumably that falls into the pocket of the insurance companies at a time when compensation is not being paid at a 100% level, and, as has been asserted, there is insufficient funding for research.
Lord Faulks: It is absolutely not the case that there is insufficient funding for research. As I have said more than once, the case is that, at the moment, there is not a suitable number of applications for research. The funding is very much there. As to any question of insurers making some profit out of this, I will look into that. It is contrary to what the Government wish to achieve.
Lord Howarth of Newport (Lab): My Lords, when the noble Lord, Lord Freud, brought in the mesothelioma legislation he did so undoubtedly in good faith. Yet, sufferers from this terrible industrial disease have now been failed not only by employers and insurers but by the Government themselves. Has the Lord Chancellor authorised the noble Lord to apologise on behalf of the Government for his decision to take up to 25% of compensation awards for costs—conduct which has been ruled by judicial review in the High Court to be unlawful? The noble Lord still has not explained to the House why the Government have failed to honour their commitment, given in terms by the Minister, Mike Penning, to set the levy on employer’s liability insurance at 3% of gross written premiums, which would have enabled better compensation and more funding for sustained research.
Lord Faulks: Compensation is full at the moment, as the noble Lord knows. I reject the allegation that the Government have done nothing. Not only are they promoting research; they have also, with their Big Tent meeting in June, encouraged much greater co-operation between lawyers acting for claimants to ensure that medical employment records are swiftly obtained. What is most important is that these claimants obtain compensation quickly and at as high a level as they can

I will be watching for anymore reports !!!

Then I read —

The 1965 report to which the Minister referred found that the interval between exposure and development of the fatal tumour ranged between 16 and 55 years. One case highlighted the fate of a woman who had died after brushing the white asbestos dust off her husband’s dungarees and work clothes when he returned from work every night. In 1965, it was discovered that even very brief exposure to the dust could prove lethal.

That was 50 years ago and despite assurances that research would be undertaken, there is still no cure. As we have heard in today’s debate, most people die within two years of diagnosis. As the noble Lord, Lord Jones, reminded us, by 1970 Britain led the world in asbestos regulation, yet the British mesothelioma death rate is now the highest in the world and has yet to peak – with a further 50,000 deaths predicted. As we have all said, it is a horrible disease, and all those who have seen it will confirm that it leads to great suffering.

50,000 deaths that is so unacceptable We have to stop this never ending suffering. We that are suffering need research program’s and the Governments must not lapse with their funding.

Also we must keep on pushing for Asbestos safety within our homes and schools. We should be sitting down and working out how to forge ahead in 2015.

It needs a different approach to how we do this. We cant keep talking in words –it needs deeds.

http://davidalton.net/2013/05/22/mesothelioma-56000-more-deaths-predicted-more-research-needed-to-find-a-cure-debate-in-parliament/

Rays Blog http://mesoandme.wordpress.com/2014/12/13/saturday-101/