A Diary of a Mesowarrior Living With Mesothelioma The 10th MesoUk Conference –The Double Act


Sitting at the station waiting for a train

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Where do I start -well starting at the beginning –we took Louis to my Son and DIL’s in the Motor home where we slept on Wednesday night.

Thursday Ray and I set off in a taxi to Gerrads Cross. We caught the train to Stratford Upon Avon. Errr no we got the wrong train and this one wasnt going to Stratford so we changed twice and finally did get to the Hotel.

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Macdonald Alveston Manor

The Mesothelioma UK team of nurses were there to greet us.

The rooms were very cosy and we settled in, showered and was ready to go out in the evening to Lambs for a really nice meal.

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All the nurses, Jeremy Steel and Greg Byrne enjoyed a lovely meal. Jeremy is so sweet in a relaxed mode.

Liz and I enjoyed being together again, it is lovely to met up now and again and catch up. She is looking so well and so slim.

We came back for a nightcap at the hotel and then bed -tomorrow was going to be a huge day.

9.30am we were registering and finding our table.

I didn’t stop talking as there were so many old friends and new to meet up with.

In came my hero Dean Fennel so I had my lovely hug from him that set me up for the day.

Liz Darlison started the proceedings as the Chair.

Mesothelioma UK (MUK) is dedicated to providing specialist mesothelioma information, support and improved care and treatment across the UK. We rely totally on donations to provide our services.

We provide funding to support Mesothelioma Specialist Nurses post across the UK and currently support 12 specialist nursing posts across the UK.

The funding supports 2 days (0.4 WTE) a week to provide specialist support for mesothelioma patients, carers and healthcare professionals. Service level agreements are set up with the trust for a 2 year period, funding is usually ongoing as long as the post holder is able to meet objectives set by Mesothelioma UK.

As well as providing support locally, the appointed nurses also support the national Mesothelioma UK helpline as part of a rota.

Due to changes within the team and additional funding availability we are currently looking to support up to a further 4 posts nationally. We are particularly keen to place posts in Wales and the London area. All posts will be awarded based on quality and strength of expressions of interest received.

Dean fennel then gave the first talk about Clinical trials

There are drugs this year like no other year.

All the trials are here http://www.mesothelioma.uk.com/information-and-support/research/clinical-trials/

Of coarse he talked about Immunotherapy and they are so pleased with the results Of my MK3475.

The next trial is to be set up by March as the it will be Phase 3 as Phase 2 has passed in the US. I didn’t realise that we worked together like that so we have applied for the funding and then the Phase 3 can start.

Louise Nelson A research Nurse talked about The Hope Unit at Leicester and explained about clinical trials. People are scared to enter them and really they should be as its a way of getting extra care. We are scanned more and are looked after very well through our illness.

Phase 0 trials aim to find out if a drug behaves in the way researchers expect it to from laboratory studies

Phase I trials are usually small and recruit only a few patients. The trial may be open to people with any type of cancer.

Phase II trials are for people who have the same type of cancer. They aim to find out if the treatment works well enough to test on a larger phase III trial. They also find out for which type of cancer the treatment works. Side effects are looked at, how to manage them and also the best dose.

Phase II trials are sometimes randomized. This means that people taking part are put into groups at random

Phase III trials compare new treatments with standard treatment. Standard treatments are those which are the best currently available.  These trials involve more people and will be conducted in many hospitals and may be multi national.  Most phase III trials are randomized.

Mesothelioma will now be treated as a cancer on its own and not lumped in the figures with Lung Cancer.

There is no staging of Mesothelioma as it is very different in all patients.

Paul Cook gave a very interesting talk about Cordotomy for pain control. We have so many nerves in our lung and they go up the arm as well -which explains my arms going numb like they did at the start. When the pain becomes unbearable it isnt good to up the morphine as it doesn’t work, More Chemo was not an answer to Pain. so they cut the nerves near the spine and get a good result. The op doesn’t hurt. And is done under local anaesthetic.

Percutaneous cordotomy is a specialist procedure for relief of pain below the level of the neck due to cancer and particularly for the relief of chest pain in one side of the chest (known as unilateral) due to malignant mesothelioma. The procedure is only performed in four specialist centres in the UK. This information leaflet is aimed at explaining what the procedure entails and the benefits and side effects.

The nerves carrying pain from one side of the body cross to the other side once they enter the spinal cord and travel to the brain in a bundle called the lateral spinothalamic tract. If this bundle of nerves is divided in the neck, pain from the opposite side of the body can be blocked. You will need to lie on your back under an x-ray camera. A needle will be inserted into a vein in your hand or forearm and a saline drip set up. Painkillers can be given if needed to make you more comfortable. Using local anaesthetic, a needle will be inserted into your neck on the opposite side to the pain you experience. X-rays are used to guide the needle. Gentle electrical stimulation is then used and, by asking you to tell us what you feel, we can check the position of the needle tip. When positioned correctly, the needle tip is then heated to destroy the nerves carrying pain.

Contact is Julian Scott Warren http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/julian-scott-warren.aspx

Bassingstoke is the contact hospital for Peritoneal Operations.

Pigeons poo has Asbestos in, which shocked me.

After a break Josephine McLaren spoke about Peritoneal which she got from washing her husbands clothes. Her husband was unable to come to terms with that and had tried to commit suicide as did her daughter so he marriage broke up. It was a real sad story.

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Then it was Ray and I who went on the stage. We did a double act. I said “ Buy One You get one free”

Ray said “at last she is allowing me to speak for two whole minutes.”

He gave a lovely speech as a husband of a Mesowarrior.

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I spoke about Schools and Industry. DIY and homes. My son had come home on Wednesday and said he had asked for the Asbestos register at a job -He is a fire alarm engineer- The building manager said the building had been stripped of it ‘s Asbestos. What about the smoke detectors were they removed. Blimey your over the top -No My Mum is dieing with Mesothelioma. With that the man removed the detectors and dust fell out and there in the ceiling void was more asbestos dust. No protection and so the dust fell over the man. Geeeee !!!

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I mentioned my trial and I thanked the carers and they way they have to put their lives on hold.

A lovely Russian lady that I had met the night before was in tears and I smiled at her. Afterwards I went and held her hand.

We were then given a wonder talk about Stratford Upon Avon by John and Helen Hogg. Loved the stories it was fascinating.

A welcome break for Lunch.

Jeremy Steele Sat in the Chair for the afternoon session.

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Greg Byrne of R B Asbestos gave a wonderful talk on Asbestos Awareness with Photos of where his company find asbestos in today’s buildings.

Everyone was enthralled with the fact that the men today are finding Asbestos and know now why I have got so involved in the Industry.

http://www.rbasbestos.co.uk/asbestos/asbestos-gallery/

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Laurie Kazen Allen and a Asbestos Global Update. Her presentation is always so good as we see how people around the world still work with Asbestos and no protection what so ever. It is very cruel.

http://www.ibasecretariat.org/

Caroline Barry from MUK National Benefits spoke all about what we should claim.

Sarah Rees told us about Living Well -The whole person approach

http://www.pennybrohncancercare.org/living-well/

Then Ross Williams a wonderful young man who has raised so much money for MesoUK after the death of his father, by running  7 Marathons in 7 days.

https://www.justgiving.com/RossWilliams7in7/

The Raffle was drawn, wonderful prizes donated were won

Liz Darlison Summed up and told us of the success of MesoUK and what is coming in the future.

That was it the day was over. I had to say bye to some wonderful people we had met and we went to our room to shower and relax before going to Dinner where the few that were staying on had a nice meal. The 10th Conference was over.

Saturday after a lovely walk around  to see the canal

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we travelled back on the right train and we were soon back and greeting Louis who met us but just then a little dog ran into the garden from a neighbours and Louis was chasing round and round with his new friend.

Today was a lovely drive along the M25 the road was easy. Very unusual .

So Next Target is on the Horizon. A MesoUK Nurses conference and they want the same double act again.

http://www.mesothelioma.uk.com/

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One thought on “A Diary of a Mesowarrior Living With Mesothelioma The 10th MesoUk Conference –The Double Act

  1. Such a lovely interesting, uplifting read! So pleased your time at the conference went so well for you, doing your ‘double act’, meeting friends, eating lovely meals together, the travelling and everything. You looked amazing! And you are doing so much good for others all the time. Hope you have a restful, contented day today. Love and many best wishes. Jennyxxx

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