Off to recharge our batteries

Tomorrow Andy and I go to Glastonbury, after Woodstock probably the most iconic music festival in the world..  Friends, family and regular blog readers know that Glasto is my happy place, it's where I can be me, indulge my passion for music, food, dancing, life.

I was so worried a couple of years ago when Andy finally agreed to come along,  I didn't want him to hate the place and not "get" why I love it so much, I needn't have been concerned, he loved it too,  he has since come along to Latitude Festival as well and has truly got the festival bug, aided by the fact that we can really take advantage of the home comforts of our retro VW Camper Van, Charlie.

Getting to Glasto has been the focus since Andy was diagnosed with cancer last November.  Everything has been geared towards making sure he was well enough to get there.  He is having an extra week off chemo this week to make sure his energy levels are the best they can be.  The Accessibility team at Glastonbury have been brilliant too, because Andy is now classed as disabled he has been able to bring a carer along and we are camping in the Accessible Campsite where there is access to medical facilities and help if we need it in an emergency.

It's all about recharging our batteries, letting our hair down and having fun.  It's not an understatement to say that the past year has been tough, even before Andy was diagnosed things have been deteriorating with Daisy.  We are struggling to manage her increasingly challenging behaviour at the moment and are starting the process to identify whether she also has autism spectrum disorder (highly likely).  We face the prospect of more surgery for her later in the year and just managing her day to day care is getting harder and harder as she has less stamina to cope with routines and being involved in family life.

When Andy became ill he was not able to help with Daisy's care and continues not to be able to.  To set up IV medication and drips and administer drugs requires clear thinking and the chemo fog doesn't help, he is also at risk from the bugs that Daisy is permanently colonised with so it's best that he focuses on himself while I care for Daisy.

So going to Glastonbury has been my focus too.  Daisy is at the Children's Trust for a respite stay (and very happy to be there with her friends and nurses), The boys are staying at home so I won't need to worry about whether they are getting sensory overload or enough sleep or food, Grandma is holding the fort back at the house also so I know that everyone will be happy.  Xanthe is coming along (she's a glasto veteran anyway, she's been attending the festival since she was 10).

I guess the only little disappointment is that Andy won't get to meet his hero, Dave Grohl.  I was so pleased when the blog post I wrote about Andy's bucket wish list to meet his hero actually got to the man himself, plans were in place for us to meet the band and watch their set from the side of the stage but unfortunately Mr Grohl's broken leg has scuppered that.  We were for a brief moment a bit deflated but we're used to this sort of thing happening, plans get changed all the time in our family as curve balls are thrown our way, so we focused on the most important thing - Andy is well enough to get to the festival, that is enough.  Maybe he'll meet Dave and the rest of the Foo Fighters sometime soon, I'm sure it will happen, but in the meantime we'll just be in the moment and enjoy what we have - time together to make some precious memories.

Plans are currently being formalised for the next stage of Andy's treatment, all aimed at making the inoperable liver tumour, operable.  He will have chemo the day after our return from Glastonbury and then hopefully a decision will have been made to treat him with cyberknife, SIRT or some other targeted radiotherapy treatment.  It's going to be a long summer and the next focus will be on getting that one awkward tumour operable so that all the tumours can be removed.

In the meantime, this weekend is all about music, food, fun and happy happy memories in the Vale of Avalon.

See you on the other side,  with fully recharged batteries, ready to take on the next set of challenges my wonderful family throws at me!


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