A Diary Of A Mesowarrior Living With Mesothelioma -House Of Commons For Parliamentary Asbestos Seminar 2016then the RM Keytruda Club Met Today


team1

Mesothelioma UK in their uniforms we want to see one of these in every hospital that s the dream.

On Tuesday I had to change my Drug day at the Royal Marsden to Wednesday so that Ray and I could attend the

Parliamentary Asbestos Seminar 2016

by Laurie Kazan-Allen

An extraordinary meeting of MPs and invited guests took place yesterday (March 22, 2016) in the House of Commons under the auspices of the Parliamentary Asbestos Sub-Group. The original objective of the two-hour event was to showcase the cutting edge work of UK mesothelioma researchers and call for a coordinated and long-term government strategy to find new treatments and a cure for a cancer killing thousands of people every year.

The agenda for the meeting which had been planned earlier in the year was changed this week to reflect the March 16, 2016 announcement in the Budget that the government would provide the sum of £5 million to establish a National Mesothelioma Centre of Excellence (see: final Seminar Agenda). While this news was greeted enthusiastically by patients and members of the mesothelioma research community, there were few details available about how the money would be allocated. From comments by Lord Alton, it was believed that the £5m had been earmarked for Imperial College at the suggestion of Imperial College’s Professor Sir Anthony Newman Taylor CBE. According to Lord Alton’s blog, Newman Taylor had urged the government to release LIBOR funds1 to:

“help fund a national mesothelioma research centre, which Imperial wishes to create with the National Heart and Lung Institute, the Royal Brompton Hospital, the Institute of Cancer Research and the Royal Marsden Hospital.”2

To learn more about the government’s decision, on March 21st Ian Jarrold from the British Lung Foundation (BLF) and Professor William Cookson from Imperial College were invited to address the seminar.3 While the BLF spokesman acknowledged that his organization, like the others represented in the chamber, had been left out of the loop, Professor Cookson indicated that the money would indeed be coming to Imperial. Having expressed his unfamiliarity with the people attending the seminar and the speakers making presentations, the Professor appeared bemused by questions about the validity of this money being given to Imperial without consultation with stakeholding groups such as the Parliamentary Asbestos Sub-Group, the Asbestos Victims’ Support Groups Forum, Mesothelioma UK and others. Calls for discussions with politicians, civil servants and researchers over the final location for the National Mesothelioma Centre of Excellence were unanimously supported by those in attendance.

A full report of the content of the presentations and discussions is under preparation. For now, we are uploading a series of photographs from the day.

20
Trevor Barlow, mesothelioma patient, who spoke about “Living with Mesothelioma.”

21
Mavis Nye, mesothelioma warrior. The title of her presentation was “A Patient’s Perspective on Mesothelioma Treatment.”

23
Graham Dring, Chair of the Asbestos Victims Support Groups’ Forum, one of the key organizers of this event.

24
John Flanagan, Merseyside Asbestos Victim Support Group, making an intervention from the floor.

25
Kate Hill, from the University of Leeds. Her presentation was entitled “Funding and Strategies for UK Mesothelioma Research: Where Now?”

26
Professor Bill Cookson, Head of Respiratory Sciences, Imperial College.

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Members of the Asbestos Victims Support Groups Forum prior to the commencement of the seminar.

March 23, 2016

https://twitter.com/ibasecretariat/status/712698427864428544?cn=bWVudGlvbg%3D%3D&refsrc=email_____

1 LIBOR funds were financial penalties imposed by the government on banks to punish them for fraudulent actions connected to the London Interbank Offered Rate (LIBOR).

2 Chancellor’s welcome Budget response on mesothelioma research centre. March, 2016.
http://davidalton.net/2016/03/01/mesothelioma-why-are-servicemen-and-women-excluded-from-help-call-in-the-house-of-lords-for-an-annual-impact-statement-to-monitor-the-number-of-fatalities-and-progress-on-research-into-causes-an/

3 Budget 2016. March 16, 2016.
https://www.gov.uk/government/publications/budget-2016-documents/budget-2016

It was a very fascinating discussion

Mesothelioma UK

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So today Ray and I travelled on very busy road to the Marsden for my drug.Keytruda.

 We still get there on time and booked in. My bloods taken and and extra vile was filled. This is for a special DNA test where the are looking at the make up for my DNA and to see if a target drug could be matched for future treatment.

I was told they have many mesowarriors coming for the trial that had open and is now closed as they have the full quoter. Little did I know that their first day was today,

A woman came and hugged me in tears as she told me how grateful she was I had alerted her daughter on Face Book. How amazing.

But a man sitting opposite said Your Mavis Im here because I read your blog and I  applied for the Trial.

 I saw the doctor who is worried about my swollen ankles but doesn’t want to give me Diuretics in case I dry my KIDNEY out but to really drink extra fluid and flush the kidneys out. Everything is good with my bloods and my kidney looks very good so I will fill a jug of water in the morning and then again in the afternoon and lets see if that does the trick and I will know how much I have drunk..

So we went down for Lunch and my new friend ate with us as we discovered about his Mesothelioma .

We sat back in the waiting room but my Drug was ready in the pharmacy so while it was collected I went to the bed

I said it wasn’t worth sitting on it, as they would have to change all the sheets so Ray and I sat on chairs. He relieved a message that another couple were looking for us. I really knew what was going on then that this was the start day for everyone.

This lovely lady came round and we hugged and she was so sweet to Ray.

My nurse said she will order a blue plaque saying Mavis slept here you so well know.

After I had my drug and I was free to go I found this lovely couple and I sat and chatted with her husband as we had already had a long chat on the phone so we did know each other. Got up to go home and a handsome young man shook my hand and said Mavis we have messaged each other and yes another of my contacts.

We are going to call it the Keytruda Club at the RM.

I have more to meet and I would hate to know they were in the other wards and I had missed them.

I wish them all my love and luck and pray the succeed on the trial. They know it isn’t for everyone and that there is always a risk but what have they got to lose.

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