A Diary Of A Mesowarrior Living With Mesothelioma -Ray has been a naughty boy!!!

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Ray has been a carer for 7 years now. OK some people say Oh your married so its your duty to care. OK I agree and its what we have done through the years but when someone has cancer and loses power in their limbs through the devastating poison of Chemotherapy, that duty becomes so hard. Ray is no cook and he will admit that but he has tried and we have muddles through. Even when he had his detaining heart attack we muddled through with the help of my Son and DIL I got to chemotherapy in Canterbury and ray was transferred to Ashford for his stent operation. That couldn’t have been more inconvenient. I couldn’t visit so we kept in touch by phone.

Then all the running up to the Royal Marsden and all I have gone through with the trial and just recently the hospital visit to me staying in with my plastic loving bug.

So much for Ray to put up with and this weekend has shocked me that my carer hasn’t been looking after his own needs. I asked the Doctor today “Who looks after the carer”. He raised his eyebrows as he agreed hmmm yes !! They give so much with a care for themselves.

This has come about as Ray went to have his assessment for his cataract operation. They took the measurements and we had to go to the nurse for blood sugar and blood pressure .

The blood sugar was very high and Ray confesses he hasn’t been taking any of his tablets for 3 weeks.I was shocked. He keeps saying I’m OK we have to worry about you Well MR Nye we are going to worry about you.

A BP of 245/105 is stroke measurements.

I have got through as he is taking all his tablets and we have thrown the sugar out and are back on a healthy diet. Lots of vegetables and Im standing over him making him eat them all.

The Bullet is out so what he doesn’t eat gets juiced and goes down him that way.

He has really frightened me but most of all he has frightened himself and he wont be doing it again.

https://mesoandme.wordpress.com/2016/02/

LC& (1)

Caring for someone can be rewarding but it can also be very tiring, putting a lot of demand on your physical and emotional energy. When you are simply coping day to day and responding to the needs of others, it’s easy to forget your own health needs.

Research has found that caring for others can have a major impact on a person’s health and well being. If you are a carer, you are more likely to be in poor health – both physically and mentally – than people without caring responsibilities.

https://www.carersuk.org/help-and-advice/health/looking-after-your-health

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Im sure all the Mesowarriors that have the dreadful disease will join me in thanking the carers for all they do for all the care and understanding. But Please look after yourself. Your life is important as well.

hug

rare desease day

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Diary of A Mesowarrior Living With Mesothelioma /A day in London

Had a great day n London as we had made arrangements to meet our friends there.

Victoria platform 2 but it ended up at the ladies loo. I dash of the train every time and Ray hands me the 50p.

Came out and was greeted by Eman.

We went around to platform 9 where Trevor caught up with us and we walked around to the restaurant.

The waiter was so friendly that we were so noisy and laughing all the time.

Ray presented his painting of Mary Seacole and Trevor had tears in his eyes so I know he could see Ray is so talented and had caught the right painting.

Mary Seacole

Mary Seacole by Albert Charles Challen, 1869. Courtesy Helen Rappaport / National Portrait Gallery

http://www.maryseacoleappeal.org.uk/home

The only other coloured painting known is hanging in the national gallery.

The meal was so good that when I went to the loo I went to the kitchen and thanked the chef personally. It was funny as I looked in and waved and he waved back crazy but then I thanked him he burst into a lovely smile.

Eman & Trevor

I showed my BCAh medal as im so proud of it and all it represents.

The time soon went and we had to say goodbye.

He train was full as it was rush hour but we had enjoyed the day.

I wish I had known they were putting this sculpture in as i would love to have seen it. The Crick soon opens as a great All Cancer Hospital so many of our Mesowarriors will be able to attend for treatment. Situated at St Pancras to the fast trains  will make it so easy to get here.

Today, one of the largest sculptures in London was installed on the plaza outside the front entrance of the Crick. A staggering 14 metres high and made of weathered steel, the sculpture entitled ‘Paradigm’ provides a strong, visual statement for the Crick.https://www.crick.ac.uk/news/news-archive/2016/02/24/paradigm/

A Mesowarriors Diary Living With Mesothelioma-Back on Keytruda and Cannula was used

I couldn’t sleep again through the night so finally got up at 4am showered and got ray up t walk Louis. We were both over worried about the Marsden day. No PICC lines in so we wondered what the day was going to bring.

Booked in and went to the waiting room.Called in for bloods but the Doctor came straight out and asked me to come to his office. Oh no what now. That’s not the routine.

Sam checked me over and was worried the rash was still showing. He wrote a prescription for more Steroid Cream and asked me to use it more often each day.

He was pleased with my general health so he said I could have the drug. The plan is to finish the first week in June.

My bloods were approved 10.15.

We went for a walk to get the Daily Mail but my article wasnt in there. I felt silly after telling everyone it would be.Please check each day on line and I will phone tomorrow and ask.

11am came the time I have always become ill for months now and I felt good.

We sat talked to everyone slept and just waited. 1.30 my drug was ready.

Then the fun began for find the vein.It took many goes and I finally had a cannula fitted

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The drug was flowing hooray !!!!!

We finished and I escaped -or so I thought. We went down to the Pharmacy but they said they had sent the items up so back up we went on the lift and everyone had a search and found my creams.

We said our goodbyes again and set off for home in traffic jams so we finally got home at 5pm.

I felt good still but kept dropping off to sleep. Its a good job Ray was awake and got us home.

Please can I ask for BLF and a young man Dave Staley who has Mesotheioma and is in Chemo is helping to raise Awareness regards Funds for research.

My lovely friend Lord Alton has been working hard on the. It would be great if the Insurance Companies would help up  but in the mean time we are fighting the corner.

From BLF would you copy the template to your MP -please—As you now know, I’m leading our campaign in Westminster calling for more funding for mesothelioma research. I’m quite optimistic – we’ve had support from MPs from all parties and there are real signs that the Government is revisiting the issue. We just need to keep pushing.

Thank you for agreeing to write to your MP and share a template letter with other meso-warriors. I have found that MPs pay a lot of attention to letters from constituents, so they can be a really effective way of getting an issue on their radar, which would be a huge help. I’ve drafted a template letter (below), but do feel free to alter it and add your own experience and message – this is your letter after all! The same goes for the other meso warriors.

If you’re unsure who your MP is, you can find out by entering your postcode on this website – http://www.theyworkforyou.com/ . If you, or anyone you forward this on to, has difficulty finding contact details for their MPs, please feel free to email me at this address (nathan.bennett@blf.org.uk) and I’ll find it for you. It’s the least I can do.

Thanks again, and best wishes,

Nathan

TEMPLATE EMAIL:

Dear (XXXXXX)

I am writing to you as a constituent who suffers from mesothelioma to ask that you help bring an end to the current underfunding of research into the disease.

As you may know, mesothelioma is a cancer of the lung lining (and less commonly the abdomen and heart) for which there is currently no cure. The main cause of mesothelioma is breathing in asbestos dust, and the average time between exposure and the development of the disease is 20-30 years.

The UK has the highest rate of the disease in the world. This year it is estimated that over 2,500 people will die of the mesothelioma in the UK, and during the next 30 years, around 60,000 people will die unless new treatments are found.

Despite the thousands affected, the valuable research which could improve treatments or cure the disease continues to be underfunded. In 2014, the National Cancer Research Institute figures showed that just £820k was invested in mesothelioma research by its partners. This is significantly lower than the £10.25m and £6.8m spent respectively on skin cancer (melanoma & others) and myeloma, two cancers with similar mortality. That’s £3,500 and £2,490 spent per fatality from melanoma and myeloma, compared to just £330 on mesothelioma.

We can’t carry on paying so little attention to this disease. That’s why I’m asking you to support the British Lung Foundation’s campaign for a small levy on the insurance companies earmarked for medical research.

Many insurers understand the importance of supporting research. By improving mesothelioma outcomes and thereby reducing compensation pay-outs, insurers would stand to benefit financially from the outcomes or research. Several insurers have donated voluntary funds, but it hasn’t come anywhere near closing the gap between the money spent on mesothelioma and other cancers which affect a similar number of people. Given many insurers stand to benefit, it also seems unfair that it has been left to two commendable insurers – Aviva and Zurich – to finance research.

The funds from a small levy on the insurance industry would transform mesothelioma research. Please could you add your support to the campaign by signing EDM 913.

Also, please would you write to the Secretary of State for Health, Jeremy Hunt MP, asking that his Department take further steps to support research into mesothelioma.

Kind regards,

(NAME)
(ADDRESS)

This is what Hazmat Pro Foundation is all about helping to raise money for reserach we need reserach into treatments.

Hazmat Professionals is a foundation that has been created with love to help and support those who are affected by asbestos related illness’s.and Im thrilled to work and we soon go live officially so I will have lots to report soon.

 

 

A Diary of a Mesowarrior living with Mesothelioma back in Hospital with a Super bug in a New PICC LIne

Map of the marsden

It seems so long ago that I went to the Marsden for a drug day last Tuesday with not a care in the world as I had a new PIC line.

The traffic was horrendous but we got through, if a little late.

I went up stairs to Oak Ward.

Richard was in the waiting room as he had come for a bloods and was sorting a new trial.

I had my bloods taken and flush done and back to wait for the Doc. Sam called me in and we chatted about the shrinkage and how I was doing.

Went back to the waiting room and when Lynne and Richard were ready we all went down for a coffee. Bought the coffee, saw Prof DeBono who said he knows who Iam and was pleased with my result. Then I came over so weird. Its just like high blood pressure but actual fact my blood pressure goes very low. Lynne was saying “shall I get someone ” but I said no I will be OK in a minute.

But I was going right out so Lynne went to Ray and said it again and of coarse Ray said get someone please.

Lynne went back to oak ward and the response team came out, I dont remeber the questions and I certainly dont remember my Staff Nurse coming down and cuddling me as Ray said.

Off  they wheeled me in a wheelchair back to the ward and they had a bed for me ready and waiting, got on it and stayed there while they carried out so many tests.

My blood presure had gone down. It was decided that cultures would be grown again but this was a new PICC line.

By the Wednesday we knew I had 2 bugs. Apparently they do love plastic. Pacemkers and new replacement hips can have the same bug.

I was told by the specialist that I would have Tazocin. I came out in a rash. So I had Coftazidine. I came out in a rash. Im never allergic to anything but I have never had such a super charged immune system before. They also stopped my drug as if I had it with a bug and antibiotics my immune system could go haywire. So I had 7 days of antibiotic.A trip to St Anthony hospital(  http://www.spirehealthcare.com/stanthonys/welcome-to-spire-st-anthonys-hospital/history-of-st-anthonys/ )was arranged for me on the Thursday and Ray came to be with me in the taxi. What a lovely hospital and I had a heart echo test as they were worried the bug might be hiding in my heart but that wasnt the case. How great that I know i have a perfect healthy heart at 75 Im so proud of that fact.

https://www.bhf.org.uk/heart-health/tests/echocardiogram

I thought you would like to see one I havent changed sex ha ha !!!

I saw a lovely Nun she was speeding around on her Disabled Scooter and chatting away. A really sweet lady.

We travelled back to the Marsden and there was a long queue to get into the site so we got out and walked into the hospital dso the taxi driver could turn around and get off. They really should do something as the drivers have to stay over to the right not spread over the two lanes.It causes chaos.

Ray went home where the dog, that was missing me badly, climbed into my bag with all my dirty washing, Bless!!! and I spent friday on my own and of coarse we are moved to Smithers Ward on the Friday.

I was moved down in my bed, I said I had better lay down and look ill or people will think Im a fraud, which made everyone laugh and my new friend went down in a wheel chair.

There was two very ill patients laying there and I thought Oh Dear!!!

They rallied round and we had a wonderful weekend.

The lovely lady in the bed opposite was a mesowarrior and her son was a Asbestos Lawyer now how amazing was that. She was waiting for a hospice which she went to on Monday.

My Son and DIL came on the Saturday and I was allowed to escape and go to the canteen with them.

I was very tearful as they left and that isnt like me. I have never cried with this desease.My son said he realised it was the shock all this has caused.

The Telly and phone had gone down on Friday and they didnt get it back until the Monday. There were 4 patients in isolation with no visitors allowed how sad was that with no telly and no phone.

Ray came Sunday so I was happy that I that I had visitors so the weekend went well.

Monday saw us back to Oak Ward where a normal life was back again. The hospital Padre came to see us and mentioned it was the mesowarrior was having her birthday so we immediatly asked to escape to the shop bought a birthday card and a dancing queen

Puckator FF30 Solar-Powered Dancing Queen Ornament 6.5 x 6 x 10 cm

Bless her she loved it and there was more hugging and kissing.

We came back in tears xxxx

Im not going to have anymore PICC lines and Im pleased as I have lost my confidence,

My drug will be put through a Cannula.

My veins are very bad though and I have had a Cannula every two days repositioned,

dav

dav

This isthe Vein Finder and they have to really search on my arm the left being better than the right.

I look like a pin cushion with lots of dressings all over the place.

So Wednesday I cane home and I have been so tired but happy to be here. I have caught up with all my office work and Merk have phoned to say they still want to meet me so that is being arranged again. Liz from Mesothelioma UK phoned and I said Iwas worried about my breathing.

She said that lungs do suffer as we dont move around in the hosptal so she advised I go out in the fresh air and she was right as we went shopping and Im breathing better now.

We bought my Brothers birthday present for tomorrow when he visits.

I have finished mt Interveiw with the Daily Mail and it is being published Tuesday in the health pages.

http://www.thisislocallondon.co.uk/news/14253349.Plans_for__world_leading__cancer_research_hub_in_Sutton_unveiled/?ref=mr&lp=10

Exciting news as the New Marsden is going to be built Ray was talking someone and they mentioned the Hub

An artist's impression of the cancer research hub

Long-awaited blueprints for a “world-leading” cancer research hub in Belmont have been unveiled.

The London Cancer Hub is proposed to include an expansion of the existing Royal Marsden Hospital and Institute of Cancer Research (ICR) as well as a new secondary school, shops, cafes and hotel space for patients and families.

The science campus would be the second biggest of its kind in the world, create more than 13,000 jobs and double the space available for cancer research, which could see the ICR increase deliver at least two extra cancer drugs every five years.

Boris backs life-sciences hub in Sutton

In a joint announcement, Sutton Council and the ICR said the hub would “bring together 10,000 scientists, clinical and support staff in a vibrant community of collaborating organisations served by research, educational and leisure facilities”.

They added: “It will be a hotbed for talent, offering research and development space for biotech, pharma and software companies, and equipment manufacturers.”

It will take about 20 years and £1 billion to finish the revamp of the 265,000 sq m site, which Sutton Council expects to generate £5m in business rates per year.
The council will look to private investors, low interest loans and grants to pay for the hub.

The plan also calls for improved transport links to and from the site, including extending the Tramlink from Wimbledon to Sutton and improving Belmont station.

Sutton Council leader Ruth Dombey said: “The London Cancer Hub will do for South London what Tech City has done for East London.

“It will create thousands of employment and training opportunities for local people and we will be supporting young people to get into the sector by facilitating the building of a school on the site which specialises in the life sciences.

“There will also be a tremendous boost for our local economy, with business opportunities generated by the workforce and visitors, and the development of transport infrastructure needed to support the world-leading site.”

Professor Paul Workman, chief executive of the ICR London, said: “The ICR and The Royal Marsden are already world leaders in cancer research and treatment, but by working with the London Borough of Sutton and the Greater London Authority, we aim to take our facilities and outputs to a new level.

“The ambition is to discover more innovative cancer drugs, to run more clinical trials and to partner with industry to take even more treatments to patients.”Mayor of London Boris Johnson said the proposed cancer hub would be a “real coup” for London and “would help to ensure that the capital remains on the frontline of developing new treatments to cure the disease”.

The council said the aim was to fund the hub through “a combination of private investment, government grants, philanthropy and commercial rental income”.

But the plan to build a ‘life-science focused’ secondary school on the site has proved troublesome.

The council bought land on the Sutton Hospital site for £8 million in March last year to build the school but its hopes were damaged when free-school provider Greenshaw Learning Trust and the Education Funding Authority said the land was too small.

Despite interest from other school providers the council is yet to announce who will build the school.

In September last year the council held consultation events at the ICR before commissioning a feasibility study in December.
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The Greater London Authority and Epsom and St Helier Hospital NHS Trust have also backed the plan.

The masterplan will be put out for public consultation later this month as part of the councils overall local plan.

 

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living With Mesothelioma A Day of Radio Interviews and Daily Mail Photographers

Oh my what a day.

We got ready and drove to Tunbridge Wells and saw the Pantiles.

It was an easy ride and we soon found the Kent Radio Studios in the great hall.

I was met by so many lovely people. the young man before me was talking about all the waste in food because of sell by dates. Rickie Willies was a very interesting young man and has a great web page about saving money. Something he has always done http://skintdad.co.uk/

Then it was my turn Steve Allen was sitting in for Julie http://www.bbc.co.uk/programmes/p03g0xlk#play

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I was so relaxed and also knew I only had half an hour slot and so much to say. It was World cancer day and they didn’t know that.

After the interview Steve said he was so emotional through it all and was so moved. The door opened and others all came in and said it had been brilliant. I think as it was such a serious illness I  was going to be a very down woman but its not me thats how I have always been thats how I fight the horrid disease.

We shook hands drove home again. It took about an hour and a quarter but we made it back in time to have lunch and get ready for the Daily Mail Photographer.

He made me laugh as he came in and started saying would I dress in bright colours. So I had to go and turn out my wardrobe for him to agree on what colours.

I had so many photos taken this way that way smile dont smile head up head down Phew it wears you out. So I had to email lots more photos over to him when he went so they have a huge selection.

I sit back now and see what daily Mail it will be published in.

So thats it we had our life to ourselves again.

I was able to twitter lots photos for World Cancer Day.

Today is ‪#‎ADayToUnite‬. This World Cancer Day, you can help transform the lives of millions affected by cancer. Text UNITE to 70200 to donate £3. Thank you.

 

 

 

 

A Diary Of A Mesowarrior Living With MesotheliomaScan Result more Shrinkage on Keytruda, T Cells, Bruises.

I had a great early ride to the Marsden today —for the sake of my Blood tester friend –yes M2 M20 M26 M25 ha ha !!!   He mentioned how I always talk about the Motorways but when you travel for treatment Motorways are sooo important

We had a long chat about testing blood and he explained he deals with the blood that he sends to Merck for me. So we discussed why mine has worked do well and others fail.

I have been asked why me and here is a good example to show you

t cells

This is how mine matched up all so perfect but those that fail only some or all fail to match up and turn the Immune system on.

I got to the ward and and booked in and was able to show my medal off. I wanted the Medics to know I won it for them as they are the ones that have kept me on this planet.

It caused a lot of excitement.

We had to settle down to bloods being taken and my poor arm washed. It wasn’t all dried blood from the PICC line it was bad bruising. One where a entry failed and then another around where the PICC line is fitted now.

After a good clean it didn’t look so honorific honest it looks so much better well not really but I dont want to make you feel bad.

I had to then go and wait for the doctor and no one knew if i was going to have the drug or not. Sam had other ideas and said next week which Im pleased as then the dates all run ahead and I get another week to make sure Im really recovered.

Sam said it might have been the drug or the antibiotics and I said no it wasn’t the drug I dont want to believe that and he told me off. Poor Sam really doesn’t understand my sense of humour or just how I research everything and work as a patient Rep. Trials mean everything to me and I want everyone to find one as its the first time we can say treatment is now coming through that isnt the poisonous chemo we have had to make do with up to now. We still need chemo as it does play a huge part in shrinking our tumours but we now need the drugs to finish it off. Its so hard finding the right on for each case but combinations will work I truly believe we are on the front line now.

I asked about my scan and Sam went through them. More shrinkage they are really going so flat. It doesn’t sink in each time just what that means. Amazing isnt it really amazing.

shout out 2

We came home early so I was able to make my appointments for a Interview with a lovely lady from the Mail tomorrow and radio Kent Thursday.

Then i had bad news for 2 Mesowarriors. Steve Wride who I have walked through 7 years with has problems

http://doingsomethingpositive.blogspot.co.uk/2016/02/getting-results-and-going-forward.html

His journey is so different to mine I love this couple so much and I have had a long chat tonight

good luck xx my dear friend xxx

Poor Richard another mesowarrior has had a drug failure again. He is with me at the Royal Marsden and I hated to hear that. He has tried so hard bless him and I hope there is another trial for him.

I have more photos come in from The Awards

This is the Official write up.

Mavis, of Whitstable, was diagnosed with a non-curable asbestos cancer known as mesothelioma in 2009. Mavis has turned her battle with mesothelioma into something positive, and is making her voice heard to educate people about this illness. Mavis works extremely hard, and has spoken at conferences and in parliament. She has also raised awareness and educated people through local and national newspapers, radio, TV, Mavis also published her own book in 2010, Meso Warrior, with all proceeds donated to mesothelioma UK.

Mavis offers a support network to other mesothelioma suffers and their families, either by internet, telephone or personal visits, through the group UK Meso Warriors. Mavis has extensively researched into the incurable disease and knows of every medical trial and medication associated.

Mavis is currently on a new drug trial, and is showing promising signs of buying extra time with her life. The new drug requires Mavis to travel the two-hour journey to the Royal Marsden hospital every fortnight for treatment. She has just received her 40th session of the drug, and has remained positive throughout her treatment and uses the time to meet up with other ‘Meso Warriors’ to share stories, advice and laughter. Mavis and her husband Ray, have a strong social presence and both have blogs discussing life with mesothelioma, both from the perspective of the sufferer and the carer. Mavis first set up her blog in June 2009, shortly after she was diagnosed, and has had over 280,000 hits.

Mavis and Ray use the blogs to talk about daily living with Mesothelioma, and research into the incurable cancer.

Nominated by Angela Caulfield Mavis Nye http://britishcitizenawards.co.uk/mavis-nye/