Living With Mesothelioma -My Diary- Meeting at the NHS as A Patient Rep asked to join the Trial Research Team and another Interview Published


A very wet day to travel in this morning.

We had to goto Our Lung Tumour Site Specific Group, at Maidstone Hospital but the traffic was so bad so it took over an Hour.

We arrived first and then when people arrived that room wasnt set out for a meeting so we all mucked in and helped set tables out and moved the chairs.

We started the meeting late but it soon got going and Minutes from last meeting were signed off.

They have come up with a great form for GPs Suspected Cancer Referral Proforma.

A short tick list to tidy up and tofast track a patient into hospital when they present with a Lung problem.

They are really trying to cut the wait we patients have to get hospital and to have a scan for Diagnosis.

There was news of the Vats Test trial being good and they are now doing the draining of the Lung and Pleurodesis at 2 East Kent Hospitals just K& Canterbury to sort thiers out and then patients wont have to travel to London anymore.

They have the money and they have the staff but they cant take patients as they cant get beds.

Very frustrating !!!

The Ebus report always fascinates me. The Doctor who delivers his report is really cute and so dedicated to his job.

An EBUS is a procedure that allows the doctor to look into your lungs (similar to a bronchoscopy) but them to take samples of the glands in the centre of your chest (mediastinum) using the aid of an ultrasound scan, these glands lie outside the normal breathing tubes (bronchi).

A flexible tube (bronchoscope), which is about the size of a man’s little finger, is passed into your lungs via your mouth (you will have a mouthguard and some protective glasses on) with you lying as flat as possible. A small camera at the end of the bronchoscope enables the doctor to look directly into your windpipe (trachea) and breathing tubes (bronchi). A small ultrasound probe
on the end of the camera allows the doctor to see the glands in the centre of the chest (mediastinum) and take samples under direct vision. Occasionally, it is useful to look down your gullet (oesophagus) at the same time with the same camera (the anesthetic in your throat allows this), as sometimes the glands can be sampled from the gullet which often causes less coughing and is more comfortable for patient with breathing difficulties (if this is a possibility, it would be discussed with you beforehand by the doctor).

Most commonly, Endobronchial ultrasound-guided transbronchial needle aspiration is done to take samples from the central lymph glands in the centre of your chest (mediastinum) which may be enlarged for a variety of reasons. In 9 out of 10 cases, we would expect this test to give a helpful answer to the problem.

In 2 years they have done 60 a year with staging and Diagnostics so picking up 92 %  but the others were blood clots.

Great Development and is being noticed.

A very nice young woman gave us figures of work she had collated. Patients treated on Chemo.

16% stopped Treatment

Patients aged 67-74 completed. Proving we older patients can get through it so please dont stop us from having treatment.

When it came to trials it is very disappointing and they dont seem to be getting info on all the trials available.

I said I will keep chasing for a central information within the NHS. I was told at mesothelioma Uk that it was happening but obviously not quick enough.

They did talk of a Trail called Prince But I cant find it at the moment.

The Command Trial is coming to Kent.

So that is just a few points out of another good meeting.

They did mention BITOG as the place to find out more about Research  they say on their Web Page

There are some encouraging treatment and trial developments for mesothelioma that need to be communicated to all clinical teams. Key is the role of surgery and radiotherapy, as well as effective new drugs in development. The programme for the meeting has been put together with a view to helping to achieve the optimal management of mesothelioma and to showcase clinical research in mesothelioma – an area that the UK leads in globally.    BTOG is keen to engage with all clinicians and health care professionals in the UK involved in mesothelioma diagnosis, treatment, and research,

You have to go to the Conferences to find info and I went to the Oncology Forum  Seems to me trials are spoken of in so many places. A national Data Base is really needed and  I will keep asking.

I have been asked if I would sit in on Research and Trials meetings they have through the year as they want a patients view. Dr Shah said he immediately thought of me.

So we are going to discuss just what that will involve.

That was the meeting over and we came home.  It was still raining though so I made us a nice comfy meal, mince and mashed potato’s

 

Minced Beef and Onions with Mash Potato

http://mesoandme.wordpress.com/2014/10/14/tuesday-115/ Rays Blog

Another Article I have been involved in was Published today

 HSE App Sparks Fury In Asbestos Community

Posted on October 14, 2014

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Despite the recent successful resurrection of the campaign, the HSE came under scrutiny over the lack of accuracy within its new mobile app which supports the new campaign. It aims to inform builders of the safety measures to take when working with asbestos.

However, information claiming that it would take at least two hours for asbestos to become dangerous has sparked outrage across the community and asbestos professionals.

Meso Warrior, Mavis Nye spoke out:

“Having now read through this document I am disappointed. It is in my opinion a lost opportunity. The people who will eventually read it may have stumbled across it by searching HSE in the expectation that this body is the ultimate place for helpful information. But I think it doesn’t seem to fall into either camp the ignorant of the dangers of asbestos or the professional.

The professional will have or should have been trained by their employers. The ignorant will not have bothered to search the web.
But those that do could find this web site and after browsing may well reach the conclusion that it’s OK to work in an asbestos environment for an hour. Thus deciding that well it can’t be that bad if I can work in it for an hour can it?

Not much mention of protection either. For the professional they wont find a need to read it having been trained and aware of its dangers.

So I feel it’s an opportunity lost. Just who it is intended for. Perhaps the good intention was there by the author but it lacks impact lacks the wake-up call. As the carer of having a wife with mesothelioma a terminal lung cancer I see the face of the evil asbestos fibers every day watching someone you love slowly being destroyed in front of your eyes. There is nothing I can do absolutely nothing.
Your article could have even should have given the severest warning that exposure to asbestos however short could result in an untimely and painful death, nothing more nothing less.”

Mavis Nye, a prominent figure within the Mesothelioma and Asbestos Disease Community, was given 3 months to live but refuses to give up her fight with Mesothelioma. She was exposed to asbestos when washing her husband’s clothes after he returned home from work at Chatham Dockyard. She continues battling to speed up life-saving mesothelioma treatments.

“I do talk from experience of Mesothelioma.

I obtained Mesothelioma by washing my Husbands clothes as he came home from work at the Chatham Dockyard as a Shipwright. After his apprenticeship and then National service he returned to the Dockyard. This is when he worked with Asbestos all around as the laggers lagged everywhere in the ships when they were being refitted.

Through washing his clothes I was given 3 months to live in 2009 but with Chemo and trials I have managed to arrive at 5.5 years. I have lost so many friends in that time, some of them Tradesmen and DIY among School teachers.

There is no safe Asbestos and only 1 fiber could cause mesothelioma.

Please would the HSE change their bad advice or remove it.”

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One thought on “Living With Mesothelioma -My Diary- Meeting at the NHS as A Patient Rep asked to join the Trial Research Team and another Interview Published

  1. hi mavis i have just read your last page of your blog and intend to read back through your journey as it has given me a ray of hope i thought we might not have, we also live near to you so hoping that the research you have done may be available to us also . My mum who is a very fit and young 76 year old was diagnosed with mesothelioma in august so we are relatively new to this disease ,we have a very large close family of which she is the heart and we all need to keep her well as long as we can , we were told it was months which has left us devastated and tomorrow we are going to discuss trials that may be on offer to her . it is so refreshing to hear that you have managed this for 5.5 years are there any trials that you are aware of that we should be asking for that have good results as i have searched and searched but cannot seem to get statistics or results for many of the newer ones .thank you so much for having such a lovely blog with an insight to someone who is still living a fulfilled life hope you are well and continue to be for the future x

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