Living with Mesothelioma -My Diary- Water was shut off. A ride out and a nice dinner to be cooked.

24 hour animation loop of Earth as seen from a geostationary satellite orbit

Another very grey day greeted us as we woke up today. I thought it was milder but as I I took Louis out to the garden the wind is still there with its icy fingers hitting you in the face.

The water went off at 10am as the valve had to be mended that blew last week.

We put water in the kettle and a saucepan and then I forgot I wouldn’t be able to shower. Oh dear I had to wait 2 hours for the water to come back on.

I worked on the computer with Debbie trying to sort out where to send Prof Vogl’s Paper which was great as we learnt who to contact for funding trials in the Uk, all interesting reading.

http://www.nhs.uk/Conditions/Clinical-trials/Pages/Ethicscommittees.aspx

Until a research ethics committee approves a clinical trial, researchers cannot ask any participants to join it.

The committees are independent both of the researchers whose work they are reviewing and of those who pay for the research.

The ethics committees that review clinical trials in the NHS are part of the National Research Ethics Service. This service is beginning to publish plain-language summaries of clinical trials that are understandable by anyone.

Before they start a trial, researchers have to submit a detailed plan of their proposed research (protocol) to a recognised research ethics committee. They may also need approval from other regulators.

All clinical trials of medicines need to be authorised by the Medicines and Healthcare products Regulatory Agency(MHRA), as do studies on medical devices.

An online system called the Integrated Research Application System allows researchers to use a single set of information to apply to the research ethics committee and to other regulators.

Great info and I have learnt such a lot from researching -The whole of googling is great Education and I sit for long hours into the night reading so much.

Animated girl gives a quick friendly wink of an eye

My Second Book is coming along as well –bit by bit pages come together. It is so very hard to sit down and write about your life as sometimes life is just a day to day doing the same thing. I try to do things we love but sometimes just to sit and watch telly is so nice.

My Just giving page has had money entered into it so that has been really growing for 2013, All very exciting.

Ray is strumming away on his guitar now and Louis is asleep on the armchair.

We have been into Faversham and parked at the Recreation field. Louis Ran off lead and played with his ball as we walked. I love to see him when he is finding freedom.

Nowadays we have to be so careful though in case the dogs run off and nasty people pick them up and do the most rotten of things.

It is a sad world at times. I wish they would make the punishment fit the crime.

The Recreation Ground was created in 1860 and covers some 20 acres. The cost of providing “the Rec” was met mainly from the bequest of the great Faversham benefactor Henry Wreight, but also by subscriptions from townspeople. 

The central area is bounded by lime avenues and there is a Victorian keeper’s lodge and summer house, used and cared for by Faversham Rugby Club.

The recreation ground is also used by local football clubs, Faversham Recreation Bowling Club and Faversham Tennis Club.

It has an enclosed playground for children and a skate park, which is free to use 24 hours a day.

I had written to DFRA and asked if they were now chipping all dogs could the have a tracker in the chip.

I had a reply today.

My Email from DEFRA Dear Ms Nye,
MICROCHIPS
Thank you for your email of 13 February about microchipping. I have been asked to reply.
We are not aware of the sort of tracker you are inquiring about. Such a tracking device would need a power source which would likely be fairly large, and much too large to fit on a microchip which is only the size of a grain of rice.
Yours sincerely,
Adam Broderick
Defra – Customer Contact Unit

So I have to agree to that .

What to do for dinner tonight

Butterbean butterboom

  • 1 x green, red and yellow peppers, chopped
  • 1 x red onion, chopped
  • 1 x courgette, chopped
  • 250g cherry tomatoes, halved
  • Low calorie cooking spray
  • 400g canned butterbeans
  • Herbs eg basil, rosemary
  • 1 tbsp red pesto
  1. Preheat the oven to 200°C/180°C Fan/Gas 6. Spread the courgette, onion, pepper and tomatoes in a shallow roasting tin and spray with low calorie cooking spray. Season with salt, freshly ground black pepper and a sprinkle of herbs. Cover the tin with foil and cook for 30 minutes – or until the vegetables look juicy and tempting to eat.
  2. Meanwhile, heat the butterbeans as per the instructions and drain. Stir in 1 level tbsp red pesto, the roasted vegetables and serve.

Tip: Delicious served warm with rice, pasta or jacket potatoes. Equally as delicious enjoyed cold in a lunch box.

http://www.slimmingworld.com/recipes/butterbean-butterboom.aspx

Yogurt for Sweet and thats me happy but not Ray so I will have to cook a pork chop and a Roast Potatoes and drawl over it.

Rays Blog http://mesoandme.wordpress.com/2013/02/28/thursday-36/

Living with Mesothelioma-My Diary-Have I at last woken up to why its important to diet.

Came to the conclusion today that my dieting through my life created the starvation that Cancer doesnt like. I was 10 and a half stone just after I retired and I got a gold badge at weight watchers and then i couldn’t stop the weight going off.

I had  sniffed in asbestos at 20 and it didn’t show until I was 68 so that’s a lot of years so maybe just, maybe, dieting was the brake on things.

http://eatandbeatcancer.wordpress.com/2013/02/03/anti-cancer-strategies-fats-and-fasting-a-revolutionary-weapon-for-an-aggressive-enemy/

Cancer is caused by faulty metabolism within the cancer cell, they say, and we can control it by restricting the fuels that cancer cells use to generate energy—glucose and glutamine, a common amino acid . Rather than eating carbohydrates and even protein, people with advanced, metastatic cancers should turn to low calorie, high fat diets instead. This will force the body to produce compounds called ketones that regular cells can use for energy but that–and here’s the clencher–tumor cells cannot metabolize for fuel.     

That’s the view proposed by Boston College biology professor Dr. Thomas N. Seyfried in his new book “Cancer as a Metabolic Disease” and landmark article as well as by other eminent scientists, including those from Memorial Sloan- Kettering and Harvard. 

carrit soup

So I made a ginger and carrot soup for lunch and Tuna and Jacket Potato with cabbage and leek. Yogurt for sweet

tuna

We have been talking also today about the supplements we take and I take Thistle and Turmeric so I think I must be doing something right.

We did go out but it seems to get colder and colder so I went in the warm shop on my own. Hoped I wouldnt do my famous fall over, but I had the trolley in front of me  and did well getting all the fresh vegetables and fruit and yogurts.

Watched the frozen cabinet’s and people are being very cagey and reading all the things on the side of the packet. It has made people really think.

I was pleased to see baskets with fresh food in. If you buy cheap frozen meals you do run a risk, and you find out why they are so cheap.

making your own isn’t that dear and you know what your eating.

Ray was walking Louis around outside and they had been for a long walk together.

tesco1

Ray took this and I didnt know I came out with a man ha ha !!! was that with Tesco points.

We came home and snuggled in after I put the shopping away.

And the cooked dinner.

Very proud of Micheal Lees from AIS  Asbestos In Schools.

http://www.parliament.uk/business/committees/committees-a-z/commons-select/education-committee/news/asbestos-in-schools-oral-evidence/

26 February 2013

The Education Committee will hold an evidence session on Wednesday 13 March 2013 on Asbestos in Schools.

Venue and Witnesses

Committee Room to be announced

At 9.30am

  • Michael Lees, Asbestos in Schools Group
  • Julian Peto, London School of Hygiene and Tropical Medicine
  • Julie Winn, Chair, Joint Union Asbestos Committee
  • A school leader [name to be aanounced]

At 10.30am

  • David Laws, Minister of State for Schools
  • David Ashton, Director of Field Operations Directorate, Health and Safety Executive

Purpose of the Session

This is a one-off oral evidence session on the issues relating to asbestos in English schools. The first panel of witnesses gives the Committee the opportunity to explore the issues raised with interest groups, experts in the field and individuals with direct experience of the problem. This will be followed by evidence from the Schools Minister and the Health and Safety Executive on relevant Government policies.

At Last we are getting somewhere with the fight to get our Schools sorted out.

Rays Blog its very good today xx http://mesoandme.wordpress.com/2013/02/27/wednesday-33/

Living With Mesothelioma-My diary- Message from Mesothelioma Uk and A Survey for Mesothelioma Patients and Carers to complete Please

Woke up very early so laid there and then got up for 5am Louis came and laid at my feet but then decided it was to earlyand went back to bed but when Im up Im up. grrr!!

I pottered around until Ray got up and then we had breakfast together.

Usual housework was done as Ray took Louis out for his walk.

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Ray had to go for his last needle appointment so we went with him and I walked Louis around again –that dog has us on a string

louis

 

 

 

 

 

 

 

We got cold so came back and waited in the car.

There is a survey from British Lung Foundation if you would like to fill up. It is to find out how informed we are on diagnosis.

The British Lung Foundation, in partnership with the Mick Knighton Mesothelioma Research Fund, would like to try and get a better picture of people’s experiences of living with mesothelioma. We are asking you to fill out the enclosed survey, which covers diagnosis, asbestos exposure and the legal process, as well as some general questions. All responses will be treated as anonymous.

http://www.smart-survey.co.uk/v.asp?i=72322wkgrd

Also When I got home I had a email from Mesothelioma Uk and a Newsletter that was of interest

An article written by Dr Jeremy Steele at Barts, London.
Published in the latest Mesothelioma UK newsletter, Spring 2013.

Nonselective Transarterial Chemoperfusion: A Palliative Treatment for
Pleural Mesothelioma. By T Vogl, S Lindemayr, N Naguib, J Gurung, N
Nour-Eldin, S Zangos, E Mbalisike. Goethe University, Frankfurt, Germany

Over several years Professor Thomas Vogl and his team
in Frankfurt have been treating patients with pleural mesothelioma with a technique called ‘Nonselective Transarterial Chemoperfusion’. This is a new way of
delivering cytotoxic chemotherapy to patients with pleural mesothelioma. It is an extension of similar techniques used
in the treatment of cancers in other parts of the body, notably the liver.
Techniques similar to that described in this article are in use in the NHS in the UK, but not for patients with
mesothelioma. Professor Vogl’s technique has been the subject of interest in the UK, especially from patients with mesothelioma who, understandably, want to hear about
all possible treatments. Doctors and nurses caring for people with mesothelioma have also been interested to hear more about this treatment. British doctors have had to be cautious about recommending treatment with nonselectivetransarterial chemoperfusion to patients because no full results for patients with mesothelioma have been available until now.
Professor Vogl’s team have now presented results on 39 patients treated with transarterial chemoperfusion.
The median survival time from first
treatment was 17 months, with a mean
progression-free survival time of 2.6
months (i.e. 79 days). Progression-
free survival is a key measure in a trial
of this type as it is sometimes used
to determine the likely benefit of a
treatment.
By comparison, the progression-free survival in the clinical trial of Pemetrexed and Cisplatin for previously untreated
patients (published in the Journal of
Clinical Oncology by Vogelzang, 2003)
was 5.7 months. An even closer comparison is with
patients treated with Pemetrexed and Cisplatin as second-line chemotherapy (as in Vogl’s trial). According to the
results, these patients had a median survival time of 15.3 months (Manegold,
Annals of Oncology, 2005). And in the randomised ‘MARS’ trial conducted in the UK, the median survival for patients not treated with radical surgery (i.e. with intravenous chemotherapy only)
was 19.5 months (Treasure, Lancet Oncology, 2011).
Professor Vogl and team say the following about transarterial chemoperfusion: ‘This procedure could be of benefit in the treatment of this tumour in stages when it is
unresectable’ and, ‘that our study results will open up the horizon for more studies to be performed.’ Professor Vogl concludes that transarterial chemoperfusion may have the potential to yield positive results and response
in the treatment of recurrent and/or unresectable pleural mesothelioma.
What needs to be done is a randomised trial of transarterial chemoperfusion versus intravenous chemotherapy.
Only a randomised trial can show if transarterial chemoperfusion offers any benefits to patients above and beyond what we can already do. The results presented in the recent article cannot confirm or deny such a benefit.

Consultant Medical Oncologist Barts and the London NHS Trust
Nonselective Transarterial Chemoperfusion: A Palliative Treatment for
Pleural Mesothelioma. By T Vogl, S Lindemayr, N Naguib, J Gurung, N
Nour-Eldin, S Zangos, E Mbalisike. Goethe University, Frankfurt, Germany

 

Rays Blog http://mesoandme.wordpress.com/2013/02/26/tuesday-40/

Living With Mesothelioma -My Diary-A trip to the Harbour

It was slightly warmer today thank goodness but only because the wind was kinder. It was raining early this morning.

My new dress arrived today and its so pretty for the summer –Oh yes we will have summer’.

dress

I cant wait to wear it so pretty and my favourite colour well rays really he has always loved blue. I have hidden it in the wardrobe and will surprise him when the sun comes out.

Ray had to go to the Docs to have a blood test so I went with him and walked Louis around the Harbour while Ray went into the surgery

whitstable

 

 

 

 

 

 

 

We had a walk around and then got back to the car just as Ray got there so we came home and rested.

I made Veronicas Kitchen Sweet and Sour

Very tasty diner again.

We had Chocolate Cake for sweet  naughty but nice!!

Debbie went home from the hospital so she is back on the road to Chemo in March. I hope she rests and gets stronger.

Well I have sat and rested all day even if it means on my computer, taking tablets every 4 hours has eased the silly pains off.

We do get wound up when we feel pain as we know things can change so  quickly from being ok to chest infection and then we are in real trouble.

But Im ok again so by tomorrow will be back to normal.-What ever normal is ha ha !!

On my Facebook this did make me laugh

http://www.dailymail.co.uk/femail/article-2284165/Great-great-great-grandmother-Daisy-Borrill-105-Grimsby-Lincolnshire-owes-long-life-hunks-trunks-calendars.html?ITO=socialnet-facebook-dailymail

Photo: 'I like their tiny trunks!': Great-great-great-grandmother, 105, puts long life down to her love of... saucy calendars http://bit.ly/15ebuSg

This lovely lady said she reached 105 because she looks at men on calenders so I have said I will be Ok as I look at men in catalogues in their underwear ha ha !!

Bless long may she live as she looks wonderful for 105

Rays Blog  http://mesoandme.wordpress.com/2013/02/25/monday-30/

Living With Mesothelioma -My Diary- Chocolate Cake Day

Boy am I fed up with the cold weather. My chest is really hurting as I breath The In is good but the out makes me feel like I have to push the air out after half way.

It means the stale air is staying in the pockets so I really need some exercise to sort it out -Or I think I do.

We Meso patients get a lot of pain in the lungs and it gets worse as the day goes on. To much time on my hands to think about it. I need a new hobby as all my hobbies are finished and Im not a good reader.

I do all my reading on the computer and keep researching new treatment in the hope there is a new trial to consider.

We did get out in the cold again and went in the car to tesco so that Ray went in and got Louis some chews and I walked Louis we had a lovely walk as the wind wasnt so strong or cold there and my little pal trotted along and was so happy.

Everyone I passed said “good morning and isn’t it cold” but Louis and I were were having a good walk and we weren’t so cold.

I got back just in time to see Ray just coming out of the shop.

We traveled back and we had some lunch.

I then started baking as I had the Pork joint cooking in the oven. I made a great chocolate cake, mmm

cake

 

 

 

 

 

 

 

 

 

 

 

 

 

The good housekeeping recipe is always a winner in our house so ray had a birthday cake after all.

Then it was a Roast Pork dinner to cook just so great on a cold day

Roast pork with braised red cabbage, pears and juniper

I cooked the red cabbage with apple and it was very tasty So all in all a lovely Sunday Dinner.

I m shattered now as I wait for Mr Selfridge, i will miss this when it finishes as I adore Mr Selfridge, Its his voice. So dreamy xx

Mr. Selfridge

I dont usual put things like this on my blog but they are really messing with the NHS and none of us know how it is going to turn out

http://you.38degrees.org.uk/petitions/petition-to-stop-new-nhs-competition-regulations-si257-being-passed

nhs

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Photo

Photo

herbs

 

 

 

 

 

 

 

 

 

 

 

 

 

Rays Blog http://mesoandme.wordpress.com/2013/02/24/sunday-40/

Living with Mesothelioma-My Diary- It snowed early morning so I made a Artic Roll !!

garda

 

 

 

 

 

 

 

 

 

 

 

 

 

Well if it this cold at Lake Garda we dont stand any chance do we’

Snow and sleet hit parts of the country today as freezing winds continue to sweep Britain, sending temperatures plummeting to levels on a par with the Arctic.

Forecasters at the Met Office said temperatures across much of the country were hovering at or just above freezing, the equivalent of Hammerfest, in Arctic Norway, which recorded a temperature of 1C today.

Swathes of the north of England awoke under blanket of snow this morning, and the cold snap gripping the UK shows no signs of abating as forecasters predict temperatures could plunge as low as minus 11C in northern Scotland in the days to come.

Read more: http://www.dailymail.co.uk/news/article-2282733/UK-weather-Winds-snowfall-push-temperature-freezing-making-Britain-cold-THE-ARCTIC–need-wrap-Wednesday.html#ixzz2LkgAIgcE

north

The man of the north looks so cold in my GGrandads home County.

Ray had got out of bed in the early hours and saw our snow but lucky when i got up it had disappeared.

It was so cold though with a bitter wind.

Ray sneaked out with Louis for his early walk while I worked on the computer and made sure Debbie had got to hospital and she started her new treatment so we know she will be out of harms way for a week.

Siobhan received her flowers for being such a good carer to her Mum. The carers do get forgotten as they have all the hard work to do and it is a lonely job sometimes, but when it is someone so young it is so much harder. i know love comes into it but that doesn’t mean we couldn’t show her our  appreciation.

So the Flower Warriors went to work

flowers siob

She was surprised and thought they were for her Mother so that was good.

I did put my coat on and wrapped up very warm to walk Louis. It wasn’t to bad the wind only blew now and again  so we did get round but was so pleased to get back into the warm and watch a film.

I ad a beef curry cooking in the slow cook all day so the house as smelt of curry all day and we couldn’t wait to eat it, then had a Artic Roll. Gosh they have been going rund for years haven’t they and I still love a slice.

My recipe I love

http://www.britishlarder.co.uk/strawberry-arctic-roll/#axzz2LkkW5ARh

My sponge that I made yesterday wasn’t as even as the recipe one but it did work.  But I didn’t take a photo ha ha !! But it was lovely anyway>

Linda Reinstein sent me a message. I just finished your tribute for the Asbestos Disease Awareness Organization (ADAO) conference program. It’s a surprise – so you will have to wait one month to read it! Congratulations for being the 2013 Alan Reinstein Honoree.

So I will have to wait –excited now.

 Mavis Nye, a mesothelioma patient, will be recognized with the Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families.

My part will be on video and I will keep reporting on all that happens as we lead up to the exciting Day.

Rays Blog http://mesoandme.wordpress.com/2013/02/23/saturday-40/

Living With Mesothelioma -My diary- Ray is 75 today and he gets a free present from the Government !!

Animated moving clip art picture of soft flaming line gif

Feel the warmth as it has been a very cold day today and every time we go out we freeze.

It has tried to snow all day but has ended up just with little flurries. This weather just hurts the breathing so it was scarfs around the mouth and then you feel like you look like your ready to rob a bank.

Well today was Rays birthday so its been a happy day. 75 today and he gets a free TV licence gosh if he was getting something free it could have been free gas or electric but free TV well !!!  No there are somethings that are good to watch so I wont moan ha ha !!!

Slice of birthday cake with flower decorations and one single candle burning

We had a walk with Louis and froze all the way round so back indoors and stayed in the warm

IMG_0025

IMG_0026

I have bought him a guitar stand as that was what he wanted.

Debbie is still in hospital and they are finding another Antibiotic that they can get into her. I know she has had enough of prodding and poking and not sleeping at night as its to noisy.

We are boosting her up and making her stay put for the weekend until they have sorted he out.

Oh well she is home now and going back for treatment tomorrow so I hope she stays warm and hope she feels better tomorrow.

Tess who is under the same hospital as me has had he Chemo and Im very interested  in her treatment as this is what I will have, when I need 4th line chemo.

I have been so lucky that I finished chemo last march and have had stable for almost a year but we live on a egg timer. The sand is running out -it is so nerve racking as you want to block the sand from falling through the hole, maybe if I sellotape it up I can live for ever.

So when I asked about carboplatin I was told no as it was in use and now it is so Im really pleased there is something waiting for me. Things change all the time.

Rays Blog http://mesoandme.wordpress.com/2013/02/22/friday-39/