A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos Last of the Xmas Shopping done, Julie Roberts Story of Her Father, A Great members debate tackling Mesothelioma in Scotland in the Scottish Parliament. #ENDmeso


xmas-card-4

Christmas is nearly upon us so I expect you are all so busy getting the last presents in and the last food shopping as Ray and I did yesterday. I keep saying its all done then something crops up. Like I had bought a jumper for Ray. I’m sure I have bought a jumper for Ray. I have hunted everywhere and the conclusion is I must have wrapped it up as a present for my son. He must have 2 jumpers now !!

So I went to get yogurt to have plenty in the fridge and tesco had a sale on and I bought 2 jumpers for Ray and 3 for me!! Oh dear!!

Really thrilled to see another trial has opened http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-higher-dose-radiotherapy-to-treat-pain-caused-by-mesothelioma-systems-2

We need more treatment for pain as it is the one thing we all suffer with as the tumours are in the Lung and there are so many nerves there causing so much pain. Even I still get pain and mine have shrunk to nothing but the nerves are damaged so I’m pleased to see a pain trial.

There was a great members debate  tackling Mesothelioma in Scotland in the Scottish Parliament.

It was Live reported and I watched it enthralled as it was very well covered by passionate members of all parties

Kezia Dugale Leader of the Scottish Labour Party and MSP for the Lothian Region chaired the meeting so professionally and with such compassion but the name that kept coming up was Julie Roberts who is fighting such a great campagne in Scotland I was so proud of her. We have met in London very recently and I look forward to meeting her again.

I could see her and her lovely Mother with other Mesowarriors in the Gallery with Lorraine Creech, Senior Mesothelioma Clinical Nurse Specialist at University Hospital of South Manchester and a Mesothelioma UK Nurse she was busy writing notes. I have hunted the papers today for a report but I cant find anything but I bet someone will write about the actual debate.

Here is Julies Story :-

Macmillian Guest post: Why mesothelioma matters 19 Dec 2016 2:00 PM

Julie lost both her dad and uncle to mesothelioma last year. Here she talks about her campaign to tackle mesothelioma in Scotland and why it matters. She is a Communications professional and lives in Edinburgh.Julie and her dad

“I haven’t done anything wrong.” It’s what my dad kept saying over and over again. And he hadn’t. Like thousands of other hard-working men up and down the country, all he’d done was get up and go to work every day so he could provide for his family; nothing out of the ordinary there. It was exactly the same for my uncle.

My name is Julie and last year my life was changed forever when I lost my uncle and my dad to mesothelioma, both within eight short weeks of each other. They were 69 and 68 respectively; newly retired, doting grandparents.

Mesothelioma is an aggressive and deadly form of lung cancer caused by exposure to asbestos. My dad contracted it working as a joiner all of his life, and my uncle through his trade as a plumber. It was as simple as that. No lifestyle factors at play, no genetics. They just went to work.

Since May this year I’ve been campaigning to raise awareness of mesothelioma in Scotland after I found out that the Scottish Government’s Cancer Strategy ‘Action & Ambition‘, released in March 2016, doesn’t reference the diagnosis once within its 60 pages. This is despite the fact that the UK has the highest rate of the disease in the world.

My campaign started with a letter I wrote to Scottish Championship football club Hibernain F.C., the club my dad supported all his life. In April this year, they launched a short film called ‘Life With Hibs’ (nickname for the Club). It struck such a chord with me that I wrote to tell them about my own life with Hibs; that every week, from about the age of 13, I used to go and watch Hibs play at Easter Road with my dad.

At the same time the Club launched a community health partnership with NHS Lothian called GameChanger, so I asked if they might be able to help raise awareness of mesothelioma through this. Very unexpectedly the Club turned my letter into a short film called ‘Life With Hibs – Julie’s Story’. The response I got was incredible and since then I’ve tried to take advantage of every positive opportunity that’s come my way.

I’ve been invited to the Scottish Parliament by the Leader of the Scottish Labour Party to talk about my campaign; I’ve partnered with Scottish Hazards, a leading Health & Safety at Work charity, and have spoken at their events; I met with the Managing Director of Mesothelioma UK to discuss how I can try and help the charity deliver on their five-year strategy through the work I’m doing. I’ve reached out to and consulted with leading medical professionals, charities, lobby groups, lawyers, campaigners and politicians in Scotland to ask them to back my campaign. I’ve written guest posts, like this one, and used my social media channels to build momentum.

At the start of November, my efforts culminated in a roundtable discussion on ‘Tackling Mesothelioma in Scotland’ that was held at the Scottish Parliament. I brought together leading experts in the field of mesothelioma, asbestos and industrial-related disease, to talk about the issues they face on a daily basis.

Following that discussion, a motion has gone before the Scottish Government on tackling mesothelioma in Scotland. Having written to all 129 of our MSPs asking them to back it, the motion has achieved Cross Party support from all five of Scotland’s political parties – a great start to acknowledging that mesothelioma matters. A debate will now take place in the Scottish Parliament on 20th December. I remain optimistic that the Scottish Government will acknowledge that mesothelioma matters; that it is just as worthy of ‘action and ambition’, and that positive actions can be taken forward so we can start to make a real difference for others, not just here but the world over.

The more I have looked into and learned about the political, economic and social aspects of the disease, the more I want to make a difference. There is no doubt that mesothelioma is a hugely underfunded cancer; a ‘Cinderella’ cancer. And whilst I appreciate money largely influences most healthcare decisions, no cancer or human life should ever have a price tag put on it. I would like the Government to acknowledge that mesothelioma matters because my dad and uncle mattered to me.

https://community.macmillan.org.uk/blogs/b/community_news/archive/2016/12/19/guest-post-why-mesothelioma-matters

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