Lots to report since last entry.
We spent a fantastic week hiring an apartment in Ilfracombe and spent loads of time on the beach and also cycling the Tarka way in North Devon. It's beautiful there and I know Paul was in his happy place - as he just stood there marvelling at the waves.. I wonder what he was thinking..
Cam and I dammed lots of streams and built many an unstable sandcastle - and we also seemed to eat a lot of fish and chips! Paul and Cam tried archery, and we spent a lot of time on bumper cars and roller coasters (Paul's lung was fine!) at the Big Sheep.
I also took Paul for a night at a napoleonic fort in the middle of the solent - No Man's Fort - for his birthday night (Huge thanks to Andi for having Cam!) It was amazing. We just laughed the whole time - met some lovely people, and sat in the hot tub in the afternoon. Turns out the spot outside our room is haunted, but we didn't care - and the hot chocolate and rum prevented us from thinking too much about it. Got a private rib ride back to Portsmouth then attended Cam's parent-teacher meeting. Ms Alys reported that Cam is doing really well and is very polite. We took him to Lego Movie 2 as a treat. We'd missed him lots!
I went on my first girls' skiing trip for 4 nights with my friends B and Anna.
Stayed in a fantastic chalet on Lake Vonnes, Chatel and our pal Kate Strong gave us mates rates - so kind!
It was fab to be away from everything but I must admit - i missed the boys. I'm becoming an increasing worrier.. and it's really annoying.
I managed to be able to ski after 8 years out, and hopefully didn't make too much of an eejit of myself but I owe Anna and B as more experienced skiiers for getting me off the mountain on the last day when we'd skiied too far, conditions had worsened and my legs had deserted me to jelly. I think anxiety took over and I lost the plot a bit - and I wonder if it was actually over the skiing or just the worry over things in general.. I'm very grateful to understanding friends though.
Think I might need a trip back to the counsellor. Doubt it would hurt..prevention rather than cure, I guess.
My brother and sister in law came to visit. It was the first time I'd seen my bro since Paul's diagnosis, so it was fab to catch up and we spent a lovely afternoon on the south bank, taking a clipper to Greenwich and back. We had such a laugh. Just wish they lived closer.
Excitingly, Erase Meso is finally taking off with various cycling events and even a few followers on our instagram page @erasemeso.
Richard Bath, our fantastic friend and CFO came over last night and we went through the Erase Meso agenda (and came out with long to-do lists!)
However, it's so wonderful that things are starting to happen.
The website is nearly ready to launch at www.eerasemeso.org, our branding is done, and we even have a ball venue!
But the most wonderful thing happened today. We met 3 spectacular folks from the www.mavisnyefoundation.com.. Mavis herself, her husband Ray and Chair Mary Mulhall at Hugh James solicitors.
We couldn't have met nicer people. I've obviously been following Ray and Mavis via their blog, and instantly recognised them. They listened to our vision for Erase Meso and we all recognised our common goals of raising awareness and raising badly needed funds for mesothelioma.
So the great news is that we can collaborate with them in future. Erase Meso will be purely a funding vehicle for research funds and we can partner with Mavis and the foundation going forward as they are very well versed in which research projects need funding and where. We were rather worried that they'd see us as competition being the "new kids on the block" but they thankfully recognised that we just want to help, and vice versa!
I have always referred affectionately to Mavis as the "matriarch of meso" because she is always so incredibly caring for those diagnosed. (I don't think she sleeps - she's always supporting sufferers - or fighting the asbestos cause/speaking at events/campaigning or attending meetings..round the clock!!) When Paul was first diagnosed she referred him to the right trials and gave him great advice. She is a long-term survivor due to a pembro trial- and has since dedicated her (and Ray's) life to the mesothelioma cause. I found her inspirational, and I thought I might cry at the end of the meeting. Ray told us that he'd had a treatment (immunotherapy) just yesterday for lymphoma - so I was amazed he even came to the meeting! What a lovely chap - so positive..and KIND.
They were really helpful and supportive. I hope we can reciprocate too.
Feeling excited about what we're doing.
Just need to DO IT.
The time is now.
Together we need to Erase Meso.