Diary Of A Mesowarrior Living With #Mesothelioma -A Study Day With Mesothelioma UK at Duxford


We travelled to Cambridge on Thursday to camp at Appletree Caravan site and what a lovely site it was

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Very flat and it lots of hardstanding which we were so pleased when a huge storm came over. Where the toilet block is Ray found it was under water. I had wondered as I saw a trailer tenet travelling- as I thought -on its own but could then see a small tractor pulling it. Everyone came over to our side where we were OK. It was a great night sleep and then we woke up early to go back a juction of the M11 to Duxfiord.

What a great way to go to a meeting.

A really lovely Conference Centre within the Duxford Museum. ray was able to wander around freely to look at the planes.

We all sat down in a room and the Mesothelioma UK meeting -Are we making Progress started.

Dr Robert Buttery from Papworth headed the meeting. We had already met at iMIG but then I had met half the room there so it was so friendly.

Dr Najib Rahman from Oxford Respiratory Trials Unit,talked about Diagnostics and Bio markers . Seems to me we just cant beat the  pleurodesis talc op.

Why some Ops dont work is because the lung is trapped and doesn’t inflate fully so it doesn’t stick to the chest wall. and so a chest drain is needed permanently.

The trial of whether .they should use radiotherapy on the port site to stop seeding in the wound was frustrating see  The Pit Study 374 in the Lancet. http://bmjopen.bmj.com/content/6/1/e010589.full

Dr Doris Rassi gave a talk on Progress in Pathology and we are a long way fro being able to  have an early warning system of Mesothelioma through blood tests.

After a break for coffee Dr Peter Szlosarek gave a great talk on Oncology -moving points

He spoke about all the trials he is working on and making progress.

and DR Robert Rintout also did a trials update. We are moving into an exciting time and so much is being done to fined the answers.

After Lunch Liz Dawlinson gave a great speech of the role of the clinical nurse

and Helen Clayson  from Glasgow Caledonian Hospital (she wrote the lovely book  for Mesothelioma UK which  is giving so much help to mesowarriors and is free,

She talked about End of life care.

Then we had a Coroner David Heming and I was dreading listening to him. BUT he was brilliant. He read a write up from a carer and what she had gone through then the feeling of alone as she travelled with out her loved one by her side.

I was later at question time to be able to ask him about making sure they always put mesothelioma as the cause of death.

he also spoke about Post Mortem’s and he said it isnt necessary he goes by scans and

bi-ops and said it is rare for the need of a PM.

That going to court is made as pleasant as they can in the circumcises which is something all carers dread.

Also a very interesting point is something I had been thinking about and that is I needn’t leave my whole body to science just my left lung. I have given it a lot of thought and think it would be Ok to have that go I have mentioned it to Ray but he doesn’t want to talk about it so its something to add to my end of life plan at the Hospice.

So the meeting came to an end and we had really enjoyed the day.

Liz and I went outside together and Ray had been walking Louis so he was ready to go home. As Liz was looking at the motorhome the heavens opened she ran to her car and I tried to dive in the M?H slipped on the steps and fell in a bush. So funny and I got drenched. The rain is so heavy when it start. We soon travelled out of it and came back to sunny Kent.

I would like to thank Mesothelioma UK for allowing me to attend I do find it so Interesting and love the meet ups with such lovely people and thank you to the sponsors AstraZeneca UK Ltd,Medela UK LTD, Pfiser Ltd and Rocket medical but most of all Irwin Mitchell Solicitors who are such a lovely bunch of people.  Well done to everyone.

Cambridge study day: ‘Mesothelioma – Are we Making Progress’. Mesothelioma UK stand and our own Liz Darlison presented on the Role of Specialist Nurses

 

I did come home to the sad news of the death of a lovely mesowarrior RIP

He was the wonderful father of  Jo Robinson, who I have been chatting with since August 2015, was kind enough to message me. that James Lavin ( everyone called him Jimmy. He was a true Irish gentleman from Mayo) Died on Wednesday at home. So raise your glass to a lovely man he will be sorely missed. RIP Jimmy
When we are weary and in need of strength,
When we are lost and sick at heart,
We remember him.
When we have a joy we crave to share
When we have decisions that are difficult to make
When we have achievements that are based on his
We remember him.
At the blowing of the wind and in the chill of winter
At the opening of the buds and in the rebirth of spring,
We remember him.
At the blueness of the skies and in the warmth of summer
At the rustling of the leaves and in the beauty of autumn,
We remember him.
At the rising of the sun and at its setting,
We remember him.
As long as we live, he too will live
For he is now a part of us,
As we remember him.

Adapted from the Yizkor Service

 

 

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