Posted by: rayandmave | October 30, 2014

Living With Mesothelioma-My Diary- Wardrobe clear out day.

Photo: <3 Love <3

Got up yesterday with a plan. To have another clear out of my wardrobe. I have been internet shopping for a new wardrobe ans as I have a couple of parties in my diary and Christmas on the horizon I have treated me. I have let buying clothes a lesser priority as I didnt have a future but Im coming to terms with the fact I might go on now that the drug is working so well.

I have for almost 6 years been thinking only of dieing. I can now think differently. So I have emptied out some clothes and we took them to the charity bins in the carpark at Tankerton.

Mind you it started raining as we walked the dog from the car park and we got soaked. Wonderful fine warm rain.

When we got in the phone was ringing and my Doctor from The Royal Marsden said that she really has been having a think about my blood sugar dropping in and out, she wants me to have a blood test when I go on Friday for my scan.

She didn’t explain what her thoughts are only that she will tell me on Tuesday when I see her again.

Then  the door bell went and the guy from the chemist passed over my prescription.

14 Nitrofurantoin 100mg capsules —To reduce the development of drug-resistant bacteria and maintain the effectiveness of nitrofurantoin macrocrystals capsules and other antibacterial drugs, nitrofurantoin macrocrystals capsules should be used only to treat or prevent infections that are proven or strongly suspected to be caused by bacteria. Nitrofurantoin macrocrystals is an antibacterial agent for specific urinary tract infections.

So it would seem Im in the superbug range of things. I dont like that. I have visited hospitals so many times in 6 years that I suppose it was bound to happen.

I already think cleanliness and this is really making me go over the top. Using wet wipes everywhere and washing my hands and surfaces.

Lets hope they work.

From there the evening was uneventful just spent chatting on Facebook.

I haven’t slept much over night.  Laying awake tossing and turning and shot the dog off the bed, poor thing.

So Im up and hope I might get a power nap later on.

A little bit of excitement in the skies of Kent yesterday

Im glad we know the reason for the noise —–Supersonic speed’

Map of affected area
An RAF spokesman said: “Typhoon aircraft were launched this afternoon from RAF Coningsby to intercept a civilian aircraft south of London which was causing concern to air traffic control authorities.

“The aircraft was safely escorted to London Stansted.

“To fulfil their quick reaction role the Typhoons were cleared to travel at supersonic speed, any noise disturbance as a result of this is regretted.”

The RAF confirmed the aircraft was a Russian-made Antonov An-26.

It apologised if crews had “startled people” but added that jets only went supersonic over land when absolutely necessary.

British Royal Air Force Typhoon FGR4 aircraft

http://www.bbc.co.uk/news/uk-england-29823148

A friend in Sidcup says  The noise was unbelievable-whole house shook.

The Royal Air Force Tweeted

 

Im so mad I didn’t see this I love Military planes and miss not going to Farnborough airshow. As a child I went every year with my parents in the motorbike and sidecar and I carried on the tradition over the years until they stopped the shows.

I love it when they fly low on maneuvers over here in Seasalter.

Rays Blog http://mesoandme.wordpress.com/2014/10/29/wednesday-104/

 

 

 

Got up yesterday and felt fine but as I made the beds my blood sugar dropped to the floor. I was sweating and felt like my head was caving in with a tight band around it. Oh dear !!!

Ray made me a sweet coffee and I ate a biscuit and sat around, I had no energy from then on. Wandering wether I out to phone the Doctor I had a phone call from the Royal Marsden. The Doctor told me that my water infection was ok when testing but when they grew it the bug was still there She emailed the report to me and to my GP.

 

Final report MSU 21 October 2014

 

White Cells

 

None Seen

Red Blood Cells

None Seen

Epithelial Cells

+/-

Urine Organisms

Nil

Urine Crystals

Nil

Urine Casts

Nil

1)

Enterococcus faecalis

Sensitivities

10,000-100,000 cfu/ml

 

Nitrofurantoin

SENSITIVE

Ampicillin

SENSITIVE

 

 

Comments:
Enterococci are intrinsically resistant to cephaloporins and ciprofloxacin and these antibiotics should not be used in their treatment.

Of coarse I googled and came up with

http://www.shea-online.org/Assets/files/patient%20guides/VRE.pdf

Vancomycin resistance is acquired when a sensitive Enterococcus acquires a special piece of DNA called a plasmid that permits the bacteria to become resistant to vancomycin. The new strains are called vancomycin-resistant enterococci (VRE). One concern is that VRE strains appear able to transfer vancomycin resistance to unrelated bacteria such as MRSA(methicillin-resistant Staphylococcus aureus) and these strains are renamed VRSA. In addition, VRE organisms, like MRSA, are usually resistant to more than one antibiotic.

VRE can be spread from person to person and are an increasing problem in hospitals and chronic-care facilities. Approximately 30% of all enterococcal infections are now caused by vancomycin-resistant strains (VRE).

Caused by a low Immune system.

Seeing that this can be contacted through hospitals worried me so Ray ordered bottles of sanitisers like you have in hospital and we will have them around the house from now on. I use wipes and gels but with my low Immune system we thought it was best. The drug may have turned my Immune system on but I dont know o what extent.

My GP emailed to say he had put the prescription into the chemist for me so that will be delivered today. What great service. It must save him time to be able to do it by email than have people in the surgery. I love this modern approach to the NHS.

The Marsden Doctor isnt to worried by my low blood sugar either she will look at that when I go to have my drug next wednesday,

I have porridge this morning for breakfast and will eat healthy to combat any problems I might be having. Brown bread for lunch and Jacket potato for dinner.

I stayed in all day as I had lost energy to face a long walk so Ray did all the dog walking.

Today I just feel like a cold coming maybe thats the problem.

MARF have written a great piece on trials http://blog.curemeso.org/pharma-large-trials-mesothelioma/

Dr. Lee Krugby Lee Krug, MD, Memorial Sloan Kettering Cancer Center

 

 

 

 

 

 

 

This week, a notification was sent to investigators on the DETERMINE Trial that accrual will be completed by the end of October. DETERMINE is an international, randomized trial comparing treatment with an immunotherapy drug called tremelimumab to treatment with placebo as second or third line therapy in patients with malignant mesothelioma. The trial opened in May, 2013, and in just 17 months will have enrolled 542 patients! This is a notable achievement. To put this in perspective, the last phase III of this magnitude testing vorinostat in a comparable group of patients (VANTAGE Trial) took 5 1/2 years to enroll 660 patients. There are differences between these two trials that could have accounted, in part, to the more rapid accrual. In DETERMINE, 2/3 of the patients receive the study drug, 1/3 get placebo, while in VANTAGE it was half and half. Also, immunotherapy drugs such as tremelimumab have garnered tremendous excitement in the oncology field due to their promising results in numerous cancers such as melanoma skin cancer and lung cancer. Yet, despite these differences, this accomplishment of completing a trial of this size in such a short period time should be a wake-up call to the pharmaceutical industry. Historically, drug companies have been reluctant to undertake large trials in mesothelioma due to concerns about feasibility and slow accrual. But this trial demonstrates the potential. Patients with mesothelioma urgently need better treatments, and with only one chemotherapy regimen approved, there is a tremendous opportunity to impact the outcomes for these patients. So here is the message to pharma: Large trials in mesothelioma are possible, and the community of patients with mesothelioma is eager to participate.

Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. Read more about Dr. Krug’s work here.

We need to get our NHS to read this so I hope all the Doctors and Nurses that read my blog will take note and take this thought into their meetings and conferences. This is what Lord Saatchi and I talked about when he introduced his Bill. We the patient are willing to try the trials no matter what as we have nothing to loose and we sign to say we wont sue anyway. Just give us more chances.

I sign off with this wonderful photo

The ceramic Poppies have been placed in the moat of the tower of London.

How wonderful that they have sold them all.

https://poppies.hrp.org.uk/buy-a-poppy/

We are delighted to announce that we have sold all the poppies. We do realise that this news may be a disappointment for those unable to purchase one of these unique pieces of art.

We will be confirming orders in the next few days and should any further poppies become available we will put details on our website.

Tuesday

http://mesoandme.wordpress.com/2014/10/28/tuesday-117/

 

 

Had a great day yesterday.

We got all showered and dressed and with the dog walked we set off to Blue Water for my date.

NYX

 

 

 

 

 

 

 

 

 

We arrived early so we do some Christmas Shopping before meeting Chris Ward  Director of Award Health & Safety Ltd.

20141027_120757(0)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can walk miles and miles in these shopping Malls and you can spend a small fortune.

We sat doen outside John Lewis and Ray went for a coffee when across the room came Chris, all smiles and we had a good welcoming hug. I told him go and tell Ray what you want, which he did and then came and sat by me. We ghad a lon long chat about everything and I was so pleased to hear how busy he is. He has a full diary of Training sessions. Award Health & Safety Ltd are an Award winning ‘Highly Commended’ Small Business of the Year, in the Portsmouth Business Excellence Awards 2010 & 2011, Trading Standards Approved, health & safety consultants that offer a full health and safety advice service. Everything from a broad range of safety audits, to health and safety training, Corporate Manslaughter Awareness Training, Fire Safety Awareness Training in English or Polish with all the required health and safety documentation. Our full range of Asbestos services include asbestos surveys & asbestos management IATP approved asbestos awareness training. A fully licensed asbestos removal service can be arranged if required.

Chris showed me some of his presentations and there is photos of me and Ray, as he he said people say they cant believe taking the Asbestos dust bake home on their clothes can harm their family and Chris show ray and I as a good example of that fact.

A lady sat down, she had a travel agency badge on and poure a glass of wine. She kept listening to our conversation and when she got up I said sorry we talking so medicale, we had been talking about lungs and the damage Ray has. She said she had been so interested as her father died of lung cancer, Ray asked where had he worked and she said, he was in the navy. Well there you are all the Asbestos in the boats it could have been Mesothelioma.

Chris yesterday tested me and was asking me what was I doing Christmas and was I planning on lots of camping next year. I was answering away and he said -See last year you kept saying “I dont know if I will still be here, now your telling me you are going to this and that, you have a future and your telling me about it.” so yes I have changed.

So it became time to say goodbye and Chris left with the promise of meeting up again very soon.

We returned to the Carpark and as usual lost the car. We had walked into the wrong car park of coarse. We retraced our footsteps, we found the car in the other car park and set off for home.

I was all worked up now and wanted to finish my Christmas shopping which I did after dinner on line. Boy so much easier sitting on a computer and shopping.

All done now so just wait for them to arrive and we will get wrapping. Ray loves doing that for me as Im hopeless.

mary and liz

 

 

 

 

 

 

 

 

 

 

 

The South African Cape Town,  21 – 24 October 2014 where the 12th International Mesothelioma Interest Group Conference was held – the world’s premier medical congress on mesothelioma. The theme was the ongoing quest for cure. which was  hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) situated in the city bowl, with the Table Mountain amphitheatre.

This Photo shows Our Mary Hesdorffer of MARF (The Meso Foundation is the only national non-profit organization dedicated to ending mesothelioma and the suffering it causes.) and our own dear Liz Dawlinson of Mesothelioma UK.I admire them both and they are always there at the end of an email when ever Im stuck for an answer. Im here when they need to know about The Patient.

Mary chaired a nursing panel and she gave two presentations at the conference. The first presentation, titled “The Voice of the Meso Community in the United States,”  discussed how the Meso Foundation,  helped community members, advocated for $9.3 million in federal research funding directed to mesothelioma research since 2008. Mary’s second presentationwas titled“Promoting Entry into Clinical Trials and Improving Access to Specialist Treatment and Care.”

Mary is a nurse practitioner with over 16 years of experience in mesothelioma treatment. She is an expert in clinical trials for mesothelioma and her work has been published in a variety of scientific journals. Mary serves as the executive director of the Mesothelioma Applied Research Foundation.

Liz trained at Charles Frears School of Nursing in Leicester qualifying in 1986. Since 1992 she has been based within the cardio-respiratory directorate of the University Hospitals of Leicester at the Glenfield Hospital site.

Liz was a ward sister/manager in respiratory for several years and in June 2000 she took up the post of Respiratory Nurse Specialist (Lung Cancer). Liz’s interests within lung cancer have always focused on developing the nursing contribution, within the multidisciplinary team, to improve patient and carer experience across the whole cancer pathway.

To meet demand locally and nationally Liz developed an interest in Mesothelioma which resulted in the establishment of Mesothelioma UK, the National Macmillan Mesothelioma Resource Centre. Liz is currently a Consultant Nurse leading the development of Mesothelioma UK. In 2007 Liz was awarded the Nursing Times Cancer Nurse Leader of the Year Award sponsored by the Royal Marsden NHS Foundation Trust.

Liz is a member of the National Lung Cancer Forum for Nurses committee and represents nursing on a variety of national and professional committees. Liz is a co-founder and current committee member of the International Thoracic Oncology Nursing Forum. Liz is a module leader and regularly lectures within the Royal Marsden School of Nursing and Rehabilitation and is an Honorary Lecturer at DeMontfort University, Leicester.

Dean Fennel of coarse was there and he has been chosen as the

Prof Dean Fennell (see here with ADAO Lind Reinstein ) was there of coarse and  he is the next President of IMIG,so I will love to be there at the 2016 conference. Everyone knows how I admire Dean as he has dedicated his life to Mesothelioma.

Professor Fennell’s clinical specialisation is in thoracic medical oncology and early clinical trials, particularly mesothelioma, with a particular interest in therapeutic targeting of the core apoptosis pathways. Prof Fennell leads a Cancer Research UK funded group with a laboratory focusing on apoptosis, drug resistance, and signature-based therapeutics using the connectivity map for accelerated, targeted drug discovery. He is currently leading UK and international clinical trials of novel targeted therapies in Lung Cancer and Mesothelioma.

There are some wonderful young men who have studied Mesothelioma and are so involved in finding the treatment.

London St.Barts Adam Trial.
Dr Peter Szlosarek MD, PhD Centre: Molecular Oncology Fellowships: Clinical Research Fellowship (CRUK)Clinician Scientist Fellowship (CRUK)

Jeremy Steel– Jeremy is Co-Director of Bart’s Mesothelioma Research. He is a Consultant in Medical Oncology at St Bartholomew’s Hospital, the Royal London Hospital and the London Chest Hospital

Then then there is the Passion of Lord Saatchi The Medical Innovation Bill will help doctors to innovate new treatments and cures safely and responsibly for cancer and other diseases.

We are so lucky in the UK to have such interest in our Cancer units.

 

 

 

Its been manic on Facebook and yesterday I add so many people into the Mesowarriors groups. What is happening is it because we are making people so aware of us or is the a surge in victims of the disease. I like to think we are making people so aware of our wonderful Facebook Groups and they are seeking info from us. We are the experts as we have all the knowledge at the frontline. I should say the battle line as it is a huge battle.

One for the need of knowledge first, when diagnosed, the where can we be treated, where are the trials etc etc.

steve-mavis-and-debbie-111001

 

 

 

 

 

 

 

 

Our Steve (we are the only ones standing out of our lovely group of 2009 )  was diagnosed the same time as me is suffering on the AZ0424 clinical trial. Hair loss being on of the main things. We women cope better as we can have wigs but a man, that is more difficult and when you have had a full head of hair it must be a shock to see a bald head. The worse part and where I feel so sorry for him is there is a lump showing on his chest. How can the disease progress when you are fighting it with a drug, that is the worse thing to happen. You meet the disease full on. If you remeber I talked about that when I saw an Xray

IMG_20140902A_133206

I saw my disease and things changed for me. I knew what I was fighting and no matter what happens with my disease shrinking the damage to my Lungs cant be mended.

Im really noticing now its winter that I get breathless on walks. I have to stop and recover. But I do it everyday as I need the exercise.

Linda keeps saying Steve is not suitable for Immunotherapy treatment. I want everyone to be suitable but she is right.   I have been having a good read and yes I can see why Steve is not a candidate for MK3475 -autoimmune′ disease-A disease in which impaired function and the destruction of tissue are caused by an immune reaction in which abnormal antibodies are produced and attack the body’s own cells and tissues. Autoimmune diseases include a wide variety of disorders, including many disorders of connective tissue, such as systemic lupus erythematosus and rheumatoid arthritis.-

http://doingsomethingpositive.blogspot.co.uk/2014/10/last-week-of-cycle-1-and-bit-of-downer.html

I hope he recovers and feels better and that the lump is not the disease growing on. My love and thoughts are with Steve,

As for me I have no side effects with the drug but pains do occur within the left lung. It must hurt as the shrinkage carries on’

Life has become so busy on Facebook as we get the word out about our fund raising Calender. There are so many calenders where people have bared all for charity that there is a competition for the best one.

http://www.thefield.co.uk/latest/naked-charity-calendars-2015-24671

We are now searching for 2015 naked charity calendars. The critieria are simple. It must be for a good cause, so any deserving charity would fit the bill. The photographs must be of good quality. And the photograher must be happy for us to use the naked charity calendar images in the magazine.

Then Angie sent everything to Good Morning On ITV heavens I dont fancy Ray and I appearing in costume on telly. Ekkk

For those not on Facebook we have put all the details into our Web Page

http://onestopmesothelioma.co.uk/calandar-girls.html

There is so much interest we are having loads of fun with this on Facebook so it has really cheered everyone up.

Off today to Bluewater where I can do some Christmas shopping and to meet Chris form IATP. He was the one who presented me with an award 2 years ago.

421643_4679853312326_889882841_n

 

 

 

 

 

 

 

 

Looking forward to meeting him and having a laugh as we both love camping.

Have a good day everyone

http://mesoandme.wordpress.com/

 

last update

 

 

 

 

 

 

With the last face on the front cover an the last picture in we have got the Calendar at the printers

There are so many calenders this year that a competition has been started so of coarse we have entered.

http://www.thefield.co.uk/latest/naked-charity-calendars-2015-24671

NAKED CHARITY CALENDARS

We are now searching for 2015 naked charity calendars. The critieria are simple. It must be for a good cause, so any deserving charity would fit the bill. The photographs must be of good quality. And the photograher must be happy for us to use the naked charity calendar images in the magazine.

But we have got our lovely girls as well.

To pre order a calender please use our paypal services
by typing in at Paypal –Mesocalender@yahoo.com

Make sure you have your full postal address correct
UK £13 Inc p&p

Overseas 
Europe €20 Inc p&p
Outside. Europe $20 Inc p&p

So life can return to normal.

We did make the Asbestos Daily As IATP have written about us in their News Letter http://www.iatp.org.uk/category/newsletters/weekly-blog/

Our community of Meso Warriors have launched a “cheeky” calender campaign today, yes they have bared all to raise awareness and raise money for research! Please support and purchase your 2015 calender.. We can all help beat Mesothelioma.

Meso Warriors baring all for the Jane Hancock Mesothelioma research Fund.

Mesothelioma is a non-curable cancer caused by asbestos. Asbestos is still everywhere in buildings, schools etc that were built before mid 70’s. More and more new diagnosis is happening on a daily basis. We haven’t reached the peak of people contracting mesothelioma, PLEASE support and buy a calender and help us to to help research to stop unnecessary deaths. There is a cure; we just have to find it!

So we have to sit back and wait for the orders to come in. We had a small start yesterday so hopefully that will grow but we have had a lot of fun and amusement behind the scenes so that has been a great thing to have happened.

The Saatchi Bill was in parliament again http://www.parliamentlive.tv/Main/Player.aspx?meetingId=16112&player=flash

Saatchi Bill wrote on Facebook — Thanks to everybody for all your support today. It was a fantastic debate and we have now moved through to the report stage.

Lord Saatchi will host, as suggested by several in the debate, a round table session to ensure the Bill is in the best possible shape before reaching the other place.
One part I was very interested in and thats the University of Oxford keeping a central Database and a Register of Innovations.Amendment 15, in the name of the noble Lord, Lord Turnberg, would require the results of innovation carried out in reliance on the Bill to be registered or recorded. This is a most important amendment and I can certainly assure the House that I have great sympathy with its aim—it has been our aim from the beginning. I explained at Second Reading that we strongly believe that the Bill should be used to generate useful data about innovation. We agree completely with what the noble Lord, Lord Turnberg, said: if the Bill were successful in its aims and encouraged innovation, what would be the point if no record of the innovations was kept in an open, transparent and fully disclosable way to show that the claims that we make—that the Bill will advance scientific knowledge—were true.I expressed delight, which I repeat, and gratitude that the University of Oxford has expressed a willingness to facilitate a central database. It is prepared and willing to do that, and it considers it very important, as we all do, including the noble Lord, Lord Turnberg.I have been convinced that the medical profession has the mechanisms in place to allow a database to be established without statutory authority. That of course leads to the question of whether this requirement should or should not be on the face of the Bill. I have been convinced—and the Minister will say more about it—that the regulators can use guidance and other forms of professional regulation to ensure that the database is used. I would have been happy to include it in the Bill but we must hear the views of the Minister. I am sure I can say to the whole House with confidence that the Government share my view and that of the noble Lord, Lord Turnberg, that the keeping of a register of innovations is a most important part of what is claimed to be the merit of the Bill.

I have not done a blog the past few days as we have been so busy in a secret place sorting out our calender for Charity.

15 Mesowarriors came up with the idea of doing a Calender for 2015.

Linda Thomas put it very nice on her Facebook wall that describes what we have done.

Hi everyone, I’ve been involved in doing a calendar girl to raise money for research for Mesothelioma , an awful cancer caused by Asbestos, please please buy a calendar and see what Rose, Jude and myself were doing while they were here, we are in the month of September , so much hard work has gone into this , so please dig deep and please could you all share this for me guys, the charity is the June Hancock Research Charity , if you clink on the link it will give you details , it’s a bit cheeky but very tasteful , I’m so proud of everyone that has took part, under such sad circumstances I have made such lovely friends , if there is anyone that would like to sell them for me just pm me Thanks Guys love you all xx

She managed to take her photo when Rose and Judith visit her in Australia and we had the lovely photo

linda thomas

 

 

 

 

 

 

 

 

 

 

I was November and I casually asked Ray would he do it with me. I nearly fell through the floor when he said yes.

calender photo ray and me

 

 

 

 

 

 

 

Bless him even Louis got in on the act.

Angela goes and finds her friends horses and out in the fields she gets such a great picture but she forgot sitting on the horse your high up and the motorists could see her as they drove by.

angie

 

 

 

 

 

 

 

 

 

 

 

I wont put everyone on as it spoils it and we need the sales.

calender front page 2

 

 

 

 

 

 

 

To pre order a calender please use our paypal services

Mesocalender@yahoo.com

Make sure you have your full postal adress correct

UK £13 Inc p&p

Overseas

Europe €20 Inc p&p

Outside. Europe $20 Inc p&p

So we have Launched today so let the money role but we have had the time of our life with this and thats what is all about having fun and raising money for the June Hanck Charity.

 

OMG what weather we travelled up to the Royal Marsden.

I was up at 4.30am in the pitch black with the wind blowing as  the Tail-end of Hurricane Gonzalo hit UK

But we did get to the hospital far to early as funny enough there wasnt one hold up with the traffic. We had a coffee then went to the ward where I booked in where all the nurses were singing out ” Hello Mavis you look so welll ” gosh yes you do look so well” It tickles me thats they even remember my name let alone my Trial and the good results Im having.

I then went to the waiting room.

After a long wait I was called in and had my bloods taken, my PICC line cleaned, weighed and blood pressure taken.

I did a sample of urine as I had a water infection last time.

Then back to the waiting room to wait to be seen by the doctor.

Ray and I both nodded and I did fall off to sleep for a minute.

The Doctor finally called me in and it was another new one. There is a team and I get to see a new one every month. This is because they are from other countries and come here tothe Marsden to train in Cancer treatments.

I really dont mind as a) they are learning about Mesothelioma and b) its great they are so enthusiastic.

She said my bloods were fine and I was keeping so well through the trial. I asked about the shrinkage The answer shocked me — she said I have —43% altogether. 33% on the first scan and 10% 4 weeks later.

She held her small finger up and said the marker one was this long at the start and half of that now, then there is a shrinkage in every area including the mass at the bottom of my lung.

I said no wonder you are all so happy about this its brilliant.

She said my bloods showed my sugars were low and I had a test with a prick to my finger. But they had risen back by then.

We went to the Cafe and had a cake and coffee then walked back to the waiting room where we got so bored waiting for my drug to be made.

Finally at 3.30pm I was called in to have my drug.

mars1

 

 

 

 

 

 

 

 

 

 

That only takes 30mins and then a flush of 5 and Im out, finished, and on my way home.

It was really windy and as we pulled up into our car park the heavens opened.Ray got soaked as he took Louis for a walk and I cooked dinner, while he was gone.

There was a parcel for Louis from Christine Winters. Louis sniffed it and carried it around for a while. I opened it and it was home made dog biscuits which he loved .

DSCF9487

 

 

 

 

 

 

DSCF9488

 

 

 

 

 

 

 

So that was the day.

http://www.walesonline.co.uk/news/wales-news/welsh-governments-remarkable-response-daily-7967737

Everyone referred by their GP via the urgent suspected cancer route is put on a 62-day pathway, during which all investigations (tests) are carried out. This is the same in Wales and in England.

“The target in Wales is for 95% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days from GP referral. In the first quarter of 2014-15 (April to June) 87.4% of patients were seen within that time.

“The target in England is for 85% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days. In the first quarter of 2014-15 (the latest figures available), 84.1% of patients were seen within this target.

“There is also a 31-day cancer pathway in England and Wales.”

“For patients newly diagnosed with cancer not via the urgent route the target in Wales is that 98% should start definitive treatment within the target time of 31 days. In the first quarter of 2014-15 (April to June) 98.1% of patients were treated within 31 days.

“In England, figures for the first quarter of 2014-15 (the latest figures available) show 97.8% of people treated began first definitive treatment within 31 days of receiving their diagnosis.

“The border between England and Wales is a porous one – patients from England and Wales receive care from the health services on either side of the border. It is therefore concerning that the Care Quality Commission has put the Wye Valley NHS Trust into special measures and rated Hereford County Hospital as inadequate.

“Indeed, the CQC has said that four out of five hospitals it has inspected are not safe. Its annual report, published on October 17, said: Safety was the biggest concern: four out of every five safety ratings were inadequate or requires improvement… far too many hospitals were inadequate on safety and the majority required improvement to be considered safe.’

Please read all the response.

http://mesoandme.wordpress.com/2014/10/21/tuesday-116/ Rays Blog sun 1

 

This has been a computer day. from early morning to late at night.

So much is going on, so many surprises. We have been doing a huge charity thing that I can reveal on Friday. I have really been enjoying working with a few friends and it is all coming together friday. Promise

I have booked a Hotel for IATP’s Winter Wonderland in January

invite finished draft

hotellobbyfull

Looks a lovely place.

I went for a walk around the local playing field. Louis loved the other dogs there and wanted to play with them as they chased their balls their owners were throwing. He was good and no barking He had done that in the park. Its the only place we havent got him under control. He really must think he has to protect the park.

The weather was windy and chilly out of the sun.

http://www.telegraph.co.uk/health/saatchi-bill/11173161/Experimental-drugs-for-patients-could-be-available-from-March-after-Government-backs-Saatchi-Bill.html

I bet Lord Saatchi was pleased with an article in the Telegraph and also on the news.

Alzheimer's drug 'could stop disease early'

Dying patients could be given access to untested medicines from early next year after the Government and doctors gave their backing to a bill proposed by Lord Saatchi.

Jeremy Hunt, the Health Secretary, has now thrown his department’s weight behind the Medical Innovation Bill which will make it easier for doctors to try out new treatments on patients without the fear of being sued.

The Bill – which has sharply divided the medical profession – has also received tentative backing from the General Medical Council, which earlier this year come out firmly against any change in the law, and a leading cancer charity.

The legislation was proposed by Lord Saatchi, the advertising magnate, who started to campaign on the issue after his wife Josephine Hart died from ovarian cancer.

Lord Saatchi told The Telegraph that the principle of allowing new drugs to be tested on desperately ill people was already being applied in the case of Ebola victims in Africa.

He said: “In dealing with the deadly Ebola outbreak, the World Health Organisation has decided that departure from standard evidence-based treatment is fully justified and essential.

“It has set ethical guidelines for the use of new therapies and interventions – they are identical to the provisions of the Medical Innovation Bill.”

Supporters said the plans – which could be law by March if MPs and peers agree – will allow victims of rare cancers to volunteer to be treated with untried drugs.

The late Josephine Hart and Maurice Saatchi. Photo: REX

Cutting out the need for years of clinical trials will bring down the cost of the medicine and may make pharmaceutical firms more likely to fund experimental drugs that only help a small number of people with rare diseases.

The Bill will be debated in the House of Lords this Friday and is due to be considered by MPs in the House of Commons In December. Its supporters said that the Bill now had a 75 per cent chance of becoming law.

Mr Hunt is hoping that the extra safeguard for patients will be enough to see off claims that the Bill is a “quacks’ charter”.

The Government has decided to support the Bill after new safeguards were agreed with Sir Bruce Keogh, NHS England’s medical director.

The amended Bill now requires the agreement of at least one other speciallist before trying out untested medical treatments on patients.

Currently doctors routinely ask colleagues in their hospital for their opinion on how to treat patients in what is called the “Bolam test”. The amended Medical Innovation Bill will require them to seek consent from other specialists in the field to pass this test.

This will stop “dominant personalities” in a hospital – perhaps a senior consultant – getting their own way and acting against the interests of the patient.

A Department of Health spokesman said: “Innovation is at the heart of modernising the NHS and is essential for improving treatments and finding new cures and work on the Medical Innovation Bill is ongoing.

“We are pleased that Lord Saatchi has tabled amendments to the Bill to help ensure patient and staff safety.” A source added: “The Government is currently minded to support the bill as amended by Lord Saatchi.”

The amendments have persuaded the General Medical Council – which opposed any changes in April – to give its tentative support for the change in the law.

Professor Sir Peter Rubin, the council’s chairman , said: “Medicine is a risky business. There are many people alive today because of the willingness of doctors to innovate, deal with uncertainty and take reasonable risks which are understood, shared with, and consented to, by the patient in accordance with good medical practice.

“While we welcome the amendments to the Bill in Lord Saatchi’s name, we look forward to seeing the final version.”

Cancer Research UK, which has also expressed concerns about the originally-drafted Bill, also now supports the change in the law.

Sarah Woolnough, the charity’s Director of Policy and Information, said it was important that Parliament discussed medical innovation.

“We know that more could be done to promote innovation in cancer treatment, especially for patients with life-threatening conditions where there are few treatment options, and the Medical Innovation Bill aims to support clinicians to act innovatively where they have exhausted other options.

“The latest set of amendments laid on the Medical Innovation Bill are an improvement, requiring a doctor to seek advice from an appropriately qualified colleague before departing from standard treatment.

“We must ensure the Bill contains appropriate safeguards to protect patients. We will monitor the Bill’s progress closely and hope we will see a greater focus on innovation thanks to this Bill.”

Despite the changes, other doctors still remain concerned. Michael Baum, Professor Emeritus of Surgery at University College London, said last night: “Never once have we encountered interference or obstruction due to fear of litigation.

“There are of course many other obstacles to progress but changing the law with this bill is not going to accelerate innovation in cancer therapy, but might, as a result of unintended consequencconsequence endanger our patients by uncontrolled experimentation.”

Dominic Nutt wrote http://www.telegraph.co.uk/health/saatchi-bill/11172667/Huge-backing-for-the-Saatchi-Bill-has-helped-its-cause.html

It has been less than two years since the introduction of Lord Saatchi’s private member’s Bill, which seeks to support doctors who want to innovate and try new treatments for patients who have run out of other options.

In that time there has been amazing progress in what is, in parliamentary terms, no time at all – most private member’s Bills fall at the first hurdle. Yet Lord Saatchi’s Bill has defied political gravity.

It started as a Bill that the Government said it would not support, and also faced significant opposition from some sectors of the medical establishment. But it has transformed into one that is fully backed by Health Secretary Jeremy Hunt and thousands of patients, doctors, charities and medical organisations.

They agree that patients who are dying and who have no further life-saving treatments available to them should be allowed the chance to explore something new and unproven – if such novel treatments are available. And their doctors must be confident that they are entitled in law to explore and offer such treatments, when all else has failed.

The Medical Innovation Bill will allow doctors to do this without the risk of being sued, as long as they follow the tight procedures within the Bill. This will give confidence to those doctors who may be anxious about using novel treatments. The Bill will encourage innovation and add momentum to the drive to find new, effective and scientifically grounded treatments for incurable diseases.

Lord Saatchi’s one and only desire is to draft a Bill that works, that will help doctors to help their patients by increasing innovation in health. There is no other agenda. This means that he has been – and remains – open to suggestions and ideas. He wants the best Bill – nothing more.

On Friday the Bill, with its amendments drafted by Sir Bruce Keogh, the medical director of the NHS, will be scrutinised and debated line by line, and peers will offer further amendments. We welcome this – this is democracy in action. It is a process that has already improved the Bill and will continue to do so.

There are twists and turns to come and knots to be unpicked. Even now, there are organisations arguing for contradictory clauses to be inserted, and not all can be accommodated. But the past two years have demonstrated that through patience, listening and goodwill, most issues can and will be resolved to make this work for everyone.

The General Medical Council and Cancer Research UK had concerns about the original version of the Bill, but today they are largely positive. Their concerns were heard and the Bill changed accordingly.

This shows how far we have come, and how through genuine consultation and a desire to reach out to experts – doctors, scientists, lawyers and patients – good law can be created.

As Telegraph columnist Dr Max Pemberton wrote: “It is a tragic indictment of modern medicine that innovation is too often jettisoned in favour of the status quo for fear of legal action. Defensive medicine is at the heart of so much clinical practice today, but the Bill – if accepted into law – would deftly excise this, leading the way for doctors to feel free to strive for medical advancement.”

All this is to late for our Darling OXO Mum We were all hoping she would reach that Christmas that she so wanted to see .

Loose Women did a lovely programme about her at dinner time

http://www.bbc.co.uk/news/entertainment-arts-29685903?ns_mchannel=social&ns_campaign=bbc_breaking&ns_source=twitter&ns_linkname=news_central

I put it her to record on my diary the loss of a really lovely lady, So pretty and so alive. RIP Linda

British actress and presenter Lynda Bellingham, who had cancer, has died at the age of 66, her agent has confirmed.

Sue Latimer said she died yesterday “in her husband’s arms”.

The actress, best known for her long-running role as a mother in the Oxo TV adverts, had been battling colon cancer since being diagnosed in July 2013.

Bellingham said she had planned to end her treatment to limit her family’s suffering after it spread to her lungs and liver.

In a statement on behalf of Bellingham’s family, Mrs Latimer said: “Lynda died peacefully in her husband’s arms yesterday at a London hospital.”

She added: “Actor, writer and presenter – to the end Lynda was a consummate professional.”

Lynda Bellingham in Oxo ad
Bellingham’s most famous role was as the much-loved mum in the Oxo adverts from 1983

Bellingham was also known for such shows as All Creatures Great and Small and in recent years was on the panel of ITV’s Loose Women.

Husband Michael Pattemore told Yours magazine, for which his late wife was a columnist, that she had been unable to die at home as she had hoped.

“She was in too much pain and they didn’t have it under control enough for me to be able to look after her,” he said.

He told the magazine: “I just want her to be remembered as an actress more than anything, not as a celebrity or one of the Loose Women.

“She started her career as an actress and never thought of herself as a celebrity – she’s always been an actress.”

Lynda Bellingham and Christopher Timothy in All Creatures Great and Small
She played Helen Herriot in All Creatures Great and Small, alongside Christopher Timothy

Speaking earlier this month, Bellingham said her decision to give up chemotherapy was “a huge relief because I took back some control of myself”.

The first 20 minutes of Monday’s Loose Women was dedicated to the show’s former co-host.

“The mood is very different in the studio today,” host Ruth Langsford said. “It’s a very sad day for us here on Loose Women… but we want this to be a celebration of Lynda.”

Bellingham’s friend Christopher Biggins gave an emotional tribute, telling the show: “Last night was a very difficult night, but I went to bed laughing, thinking of a joke she used to tell over and over again.

“It’s a blessing in a way, we don’t want her to suffer any more.”

Colleen Nolan, a panellist on the programme, was visibly moved but singer Jane McDonald, who also used to work on Loose Women, said Bellingham “would be mortified if we were all sad, weeping and wailing”.

She added: “We have to keep the spirit of Lynda alive.”

A final interview with Bellingham, which was recorded a few weeks ago, will be broadcast on Wednesday.

During an emotional appearance on the show recently, the actress told viewers: “Grasp it all, don’t be afraid, enjoy the bits you can and tell your family you love them while you have the chance.”

‘Naughty and funny’

After her death was announced, Christopher Timothy, who starred opposite Bellingham in All Creatures Great and Small, described her as “a real friend”.

“She was a life force. She was funny, she was loyal, talented and a great mum,” he told the BBC.

“On set, she was ‘one of the boys’ really – she was naughty and funny. We’ve all been expecting it, but it is so unjust she didn’t make her last Christmas as was her intention.”

Diana Moran pays tribute to friend and colleague Lynda Bellingham

Michael Redfern, who played Bellingham’s TV husband in the Oxo commercials that became a national institution, said “everyone liked her”.

“I think she was just normal, I think that’s all it was,” he said. “She was like the lady next door, the wife, your mother. She had everything, just a very open person.”

Kaye Adams, another of Bellingham’s Loose Women co-presenters, said Bellingham would be remembered as “honest, generous, kind, courageous, intelligent, thoughtful”.

‘Ultimate professional’

Denise Welch, who also presented on Loose Women, told BBC Ulster Radio: “She turned everything into a positive. She’s left a wonderful legacy. [She was] one of the best character actresses that this country has known.”

Bellingham was born in Montreal, Canada, but grew up near Aylesbury in Buckinghamshire after being adopted.

She studied at the Central School of Speech and Drama and went on to land roles including Helen Herriot in All Creatures Great And Small and the title role in sitcom Faith In The Future.

The actress, who had two sons and was married three times, was awarded an OBE in 2013 for her charity work.

candle (1)

 

 

What wonderful warm weather we are having for October. We turn the clocks back next Sunday with November the next day and yet we are still walking around in summer clothes and I wore my flip flops yesterday.

We walked in Tankerton with Louis and noticed the smell of Fish and Chips. People were sitting on the benches looking out to see eating their lunch. the fish here is so fresh as the Fishing boats go out at night and bring their catch into the harbour in the morning.

Children were running around and playing and dogs were enjoying the walking. There was a coach in the carpark and the cafes and restaurants were full, people sitting outside of the Pubs just enjoying the sun and yet in 2 months they will be celebrating Christmas.

I love the Seaside now we haven’t got to many visitors.

We shopped in the green grocers buy fresh Vegetables and walked right round to get back to the car.

Watched telly and worked on the computer in the office.

Talked about the back lash to the HSE App

IATP was mentioned in this report as they seem to be the only Training Company having a say –well along with my Opinion in Asbestos Justice.

Construction union UCATT have welcomed a new Health and Safety Executive (HSE) asbestos awareness campaign but has warned that workers have been denied effective advice for over four years due to government “penny-pinching”. The campaign will see asbestos safety packs distributed at TradePoint outlets and an app which can be downloaded onto phones and computers that informs workers when they are likely to come into contact with asbestos. HSE says it is a problem leading to the death of 20 tradespeople every week. UCATT general secretary Steve Murphy said the government’s bar on campaigns – the Hidden Killer campaign was on the blocks and ready to go when David Cameron came to power in 2010 – “means that for the last four and a half years, thousands of workers have been needlessly exposed to asbestos and their health put at risk.” UCATT said it was dealing with “an increasing number of cases where a lack of training or a lack of information means that workers are needlessly being exposed to asbestos.” HSE’s new campaign has its critics. They say a lack of awareness is not the problem for most building workers, it is an inability to act for fear of losing their job. The answer to this, they say, is a greater HSE emphasis on regulation, inspection and enforcement. And IATP, the organisation representing asbestos training providers, has warned that HSE’s app could encourage workers to undertake work with asbestos materials that should only be done by properly protected and trained licensed contractors. An unusually high number of comments critical of the app have been posted on HSE’s asbestos licensing web community forum.

http://www.tuc.org.uk/workplace-issues/health-and-safety/risks-newsletter/risks-2014/tuc-risks-676-18-october-2014#_Toc401229498

I had a great Invitation from Mesothelioma JLA PSP priority setting workshop. They arranged to have a final priority setting workshop in London on November 10th.  This is a day (10am until 4pm) where patients, carers and practising health professionals come together to discuss the top 30 prioritised questions arising from our survey and to jointly agree on the top 10 priority questions for mesothelioma research to answer.  The day is facilitated by James Lind Alliance advisers and the project steering group plans to publish a paper after the workshop about the year-long process and the results. There will be around 24 active participants in the workshop and we would like 12 of them to be patients or carers.  I’m writing to ask whether you would like to be involved in the day, to put across a patient’s point of view in the discussions.  The workshop will be held at Friend’s House in Euston, London,

So I have said yes of course and will report back.

With that all arranged I went to bed shattered.

Today The Mesowarrors have been arranging the Secret Santa. We love this bit of fun and it does make people happy to take part and forget their worries for a little while.

Also Ray and I have been for a walk and guess what I have got my trainers back one. my ankles are so small now. I walked around and was a bit unsteady on my feet. I will have to use my stick for the winter. The wind makes my lung so tight. I feel as if someone is squeezing the lung hard at the bottom. It is very very windy today infact it picked up a empty coke can and it travelled to us in the air with such a force we both shouted. It carried on and hit a cyclist off his bike. Goodness and the 300 mile storm hasn’t arrived here yet. What on earth is tonight going to be.

I have a lovely smell drifting in the house as 2 huge Lamb Chops are in the slow cook. Dinner is nearly ready.

The butcher at the farm shop cut two chops  from here about 4 inches deep I think one will be enough between two.

Knock Knock !! whos there !Mesowarrior  Karryanne –I have just had a wonderful surprise thank you and thank you for my Pumpkin. You have made my day xxxxxxx

She has taken a photo I will put it on when she loads it on Facebook

danceRays Blog   http://mesoandme.wordpress.com/2014/10/19/sunday-102/

Yesterday was a very slow day -well thats how I felt. It has been so busy with my support group off line and helping people to find a trial or a Hospital for treatment. I cant believe this is the cas. The sooner they get a central Database for trials and stop making it so hard for the Patient the better.

There are not a lot of trial for Mesothelioma so we have many searching for so few.

The great news yesterday was that Jim Homersham has been invited to the Royal Marsden  to talk about treatment.

Carol his wife said yesterday on our carers group –Fantastic news !! We have just heard from our hospital that Professor de Bono at the Royal Marsden will be happy to see Jim with a view to going on a trial. Hooray ! Just waiting for the date. I was so pleased I cheered.

Published on Sep 21, 2013

 playing Ain’t Nobody’s Business in the barn Barley Mow West Horsley 1997
Recorded by Nick Frost.
Vocals JJ Fairs

Jm Heads the Blues band Dr JJ’s Blues Band.

I wish him all the luck and hope we do meet up together.

Another Warrior Ray has had to come off a trial –Amanda says

I am now totally confused at how drug trials work. Having wondered for two months if he is on the drug or placebo , with absolutely no side effects at all, three days ago he notices a small raised area of skin at the top of his bottom, which may be a slight rash.

Not wanting to get carried away as just as possible it is a reaction to washing powder, he mentions it at the usual check up two days ahead of the dose. Note made in his records but nothing else mentioned.

All proceeding as usual with the waiting while drug made up etc today, when just as it is due to be administered can he go and see the doctor . Sees new doctor not connected with trial who looks at possible rash, dashes off and comes back to say – no dose possible, will put it off for a month.

CT scan will therefore be done after 2 not 3 doses , which jeopardises chance of remaining on trial.

Have I totally missed the point on this – since when does a minor, possible side effect, stop the infusion, of a drug they believe may halt a terminal cancer.

Has anyone else had a dose stopped for this reason – I have no idea how this makes any sense. We have a duty of care to patients we kept being told as not a licensed drug !!! So shame about not administering something that might slow down the cancer but at least you won’t have a pimply bottom!!!

I am so totally gob smacked by this , I can’t even think of a sensible question because the whole thing sounds like some Kafka nightmare. i remember reading the Saatchi bill exponents saying drug trial protocols made no sense for terminally ill diseases but I didn’t expect to come across it quite so soon.

Plus if you put a trial on pause , the minute you get the slightest hint of a side effect, surely that makes the trial less effective.

Any other experiences welcome

http://ajandray.wordpress.com/

I have only had a trial stopped because it wasnt working and my Mr Nasty kept growing. I would think that if a rash was observed then that was a sign that something was not right and I can see why they stopped it. Poor ray it is a very worrying time.

On googling The most common treatment-related adverse events in the tremelimumab arm included diarrhea, pruritus and rash.

dragon fly2

 

 

 

 

 

 

 

 

 

Good news as more money is being raised for Mesothelioma Research The National Institute for Health Research (NIHR) welcomes proposals for clinical and applied health research into mesothelioma. NIHR operates a number of research funding schemes and would like to receive high quality proposals on any aspect of mesothelioma, its prevention, earlier diagnosis, treatment or care (including palliative care) – where there are likely to be benefits for patients or their families, within 5 years of the end of the research.

http://www.themedcalls.nihr.ac.uk/mesothelioma

Every little bit is welcomed.

http://www.standuptocancer.org.uk/?gclid=CKeWvfTetcECFQjItAodXzcAwg

Last night Stand up for Cancer raised almost £15 million and maybe more by today as the money rolls in. It did a little rowdy at times and I felt uncomfortable with the comedy. Im ashamed to say I did turn it off.

I think more money would have been raised if it was done by the BBC.

But it has raised a good figure so thats what matters. Iwish the mentioned some of the rarer cancers like our Mesothelioma. The popular cancers raise the money but if Asbestos had been mentioned I would have been happier as would the Mesowarriors.

http://imig.org/archives/1841

A very interesting artical to read about Mesothelioma

Dr. Joseph R. Testa, PhD and colleagues, recently found that mice were more likely to develop the deadly form of cancer associated with asbestos exposure – known as mesothelioma – if they carried a mutation in a gene known as BAP1, which affects the expression of many other genes.  However, when it comes to mesothelioma, exposure to asbestos carries more weight than genetics – even mice that did not carry BAP1 mutations developed tumors after being exposed to asbestos, while none of the unexposed mice with BAP1 mutations showed signs of mesotheliomas by the end of the study.

“To get mesothelioma, having a BAP1 mutation doesn’t appear to be enough,” says Dr. Testa.

ADAO IMig

 

The IMIG are having a huge conference in South Africa where so many of my friends in the Meso world are heading.

http://imig2014.org/

Mig cordially looks forward to welcoming you to Cape Town, South Africa from 21 – 24 October 2014 for the 12th International Mesothelioma Interest Group Conference – the world’s premier medical congress on mesothelioma. Our theme is the ongoing quest for cure. It will be hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) which is optimally situated in the city bowl, with the Table Mountain amphitheatre as the backdrop and the spectacular Waterfront on its doorstep. Cape Town was rated the world’s best tourism destination in 2011 by TripAdvisor. We trust that we will attract many delegates and stimulate a memorable and meaningful meeting, with some superb after hour’s entertainment and relaxation, and of course the opportunity to experience a bit of Africa.

We expect to attract professionals from the following disciplines:

  • Medical Oncology, Radiation Oncology
  • Thoracic Surgery
  • Pulmonology
  • Radiology
  • Pathology
  • Epidemiology
  • Basic Laboratory Research
  • Oncology and Clinical Nurse Specialists
  • Social advocacy

 

See you in Cape Town with its wonderful spring-summery weather and glorious hours of sunshine!

Sincerely
Dr Jim te Water Naude (SAMig Chair)
Prof Anthony Linegar (SAMig Co-Chair)
Prof Steve Mutsaers (iMig Chair)

IMG_20140517_181721Rays Blog http://mesoandme.wordpress.com/2014/10/17/friday-105/

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