Monday, 13 October 2014

A very wet Monday

Today we woke up to rain, rain and more rain.  Not great when you know you have to go out, even if it is just to walk round the corner to nursery.  Ethan and I were both ready to leave the house and the rain got even harder.  I really didn't think we would get that wet, but poor Ethan's coat was soaked by the time we reached nursery.  He didn't seem to mind.

My task list today was as long as my arm.  Apart from the usually housework, cleaning the bathroom and the ironing were achieved.  Yay!

My other important task today was to make the first contact to get it arranged for Paul to have the genetic test to see if he does have the gene mutation which have been proven to link Mesothelioma and Melanoma of the eye.  Paul's Dad unfortunately died of melanoma at the age of 46.  I have put the wheels in motion today for the test to be done.

I have also received a response to my e-mail to JUAC regarding asbestos in schools.  My next task is to write to our choice of prospective schools for Ethan and see if I can find out about the asbestos the school contains and also their management plan of it.  I can only hope that asbestos has been removed since 2008 but the statistic that 75% of schools still contain asbestos doesn't really make me think that will be the response I receive.

Thursday, 9 October 2014

Asbestos Awareness and Mesothelioma on BBC Look East Tonight!

Today Paul received a message from our friend Simon Clark who we have met through the Papworth Support Group.  He was interviewed this morning by BBC Look East for their programme tonight. Simon was diagnosed with Mesothelioma around the same time as Paul and has also undergone surgery.  We set our TiVo box to record.  It was a very good interview and I hope lots of people tuned in.  I tried as best I could to get the word out on social media.  Well done Simon!   

I have taken a quick camera video of it which can be viewed here (apologies for any background noise, our three year old was in the bath)

Monday, 6 October 2014

Mesothelioma UK Patient and Carer Day, well Weekend for us!!

On Friday we collected Ethan from Nursery and dropped him off at Grandma and Grandad's for the weekend as we had booked to attend the Mesothelioma UK Patient and Carer day on Saturday in Leicester.  We travelled by train to Leicester and got to the the hotel at about 4pm.  We had a quick walk around the shops and then went back to our room for a cuppa.  We had dinner booked in the hotel which was lovely.  Before we went for dinner we finally got to meet the lovely Mavis Nye and her husband Ray.  For those of you who don't know, Mavis is a five and a half year survivor of Mesothelioma and therefore a huge inspiration to Paul and I.  Mavis writes a daily blog and is highly involved with facebook groups and does lots of campaigning and research.

We also met Mary Hesdorffer from MARF, US.  Paul happened to mention to her briefly about his Dad having a rare melanoma of the eye and she quickly told us about a gene mutation which had been discovered as a link to both of these cancers and could therefore be an inherited disposition for Paul developing Meso.  Well, our minds were then in overdrive!  Mary has said that Paul can be tested and we will certainly be getting in contact with her so we can hopefully get it sorted out.

After our dinner in the hotel we sat chatting with Chris and David who also attend the Papworth Support Group.  That was very nice, as although we have met them before it gave us time to get to know them better.

Saturday morning arrived and we went down for Breakfast.  Mavis saw us and gave me a lovely silver dragonfly for Ethan and a gorgeous dragonfly scarf for myself.  Was a really lovely thought and very unexpected.  Thank you very much Mavis xx

The conference started at 9.30am and we met up with some others that attend the Papworth Support Group.  Simon and Zana, Peter who had also brought Jennifer with him and of course Chris and David who we had chatted with the night before.  It was really lovely to spend the day with everyone getting to know them a bit better.

The conference itself was very interesting.  I can't write about it all as there was just so much but the bits I found most interesting were the Mesothelioma Stats right at the very beginning, Professor Dean Fennell talking about the trials and of course Mavis with her patient story.

Just before lunch the patients were given the opportunity to take the microphone and share their own stories.  I was keen for Paul to speak and tell his story.  Mesothelioma has an average age at diagnosis of 71 and I am always very conscious that people will not know Paul has Mesothelioma unless he tells them.  Paul wasn't too keen on standing up and speaking but he did and I am very proud of him for doing so.  Afterwards a few people did come and speak to us and tell us that they were pleased he had spoken and that they thought we were very brave to have attended.

At the end of the day we went out with a guide and she showed us around some of the interesting parts of Leicester.  It was really nice to have that to do or we would not have really known much about the area at all.  We got to see where Richard III was discovered.

We got back to the hotel and booked a table for dinner.  After dinner we met Mavis and Ray in the lounge and chatted til it was time to go to bed.  It was great fun.  One thing Ray said sticks in my mind and I totally agree it is so very true.  He said 'Mesothelioma didn't know what it was taking on when it picked on Mavis!'  So very true, she is such an inspirational survivor, we are honoured to have met you both xx

Sunday morning we woke up later than Saturday which was nice.  At breakfast it was time to say goodbye to those that were still there including Mavis and Ray.  We packed our case after breakfast and then went out to have a walk and quick look in the shops before our train at just after 12.  We had a nice walk and found the Castle which our guide had talked about the night before but it was a bit too far away to walk to then.

We got the train home and waiting on the station at Ely with Grandma and Grandad was Ethan!  I think he had missed us and we had missed him.

We had an amazing weekend away and learnt so very much and met some truly wonderful people.