Accessible Glastonbury

We are back from another epic Glastonbury, batteries recharged and home to the fabulous news that Andy will start SIRT radiotherapy treatment by the end of the month with a view to trying to make his inoperable tumours, operable.

Focusing on getting to Glastonbury has got Andy through the months of gruelling chemo  and we've come back determined to get there next year (when hopefully The Foo Fighters will play and Andy will meet his hero at last!).


Team Nimmo at the Pyramid Stage

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.


When carers get sick

I've got yet another chest infection, I feel really rough and no doubt, thanks to my asthma, a prescription for a course of steroids will be on the cards by Monday.  It took all my human strength to get Daisy to her respite at the Children's Trust on Friday.  Respite that had been booked initially because I was supposed to be running an overnight Enduro race on Wimbledon common, when an ongoing achilles issue scuppered those plans we then planned to visit friends in Cambridge and have a weekend away, when chemo scheduling scuppered those plans I arranged post birthday drinks with some of my friends - and now this lurgy has scuppered those plans.

If I worked full time I would have been signed off sick, but when you are a carer and people rely on you to make sure you have meds or food or to speak to doctors on their behalf then you cannot be sick.  It just all became too much yesterday as I felt so poorly and fed up about our situation. Fortunately we are all made of pretty strong stuff in our little family and they all rallied around showing through actions (and not necessarily through words) that they do care and appreciate what I do.

Words came this morning however in this lovely post my husband put on facebook, it sums it all up really. 

It's carers week and it's great to see a campaign to highlight the huge need to look after those doing the caring for people with illness and disability. 

This weekend hasn't been the happiest as the one person holding our shit together gets sick and things start to get difficult. That accumulated stress and pressure on carers affects not just us but shared by hundreds of thousands of people in this country doing the same. It's a mostly thankless task as they are expected to look after people under the most trying circumstances. 


It's the long term day in day out constant tasks both physical and mental to keep moving forward, each person finds their strength to deal with it in their own way. And to make the best of each day without faltering as you have the life of someone in your hands is something quite amazing. 


I have it easy to be honest in comparison to what Stephanie Nimmo goes through, all I'm dealing with is my road to wellness and I can control how I am in this, but when your essential support cant function you realise how wrapped in your own world you can be and not see the needs of others.

Give the invisible children a break too

A few years ago I wrote a blog post about whether respite was a right or a privilege.  It has always felt like I should be so grateful to the powers that be for the opportunity to get a full night's sleep.

When you become a parent you expect that the early years are going to strongly feature broken sleep and long hours watching the latest Disney offering, but eventually your child will sleep through and become independent and your evenings are reclaimed.  And as they grow older they go on sleepovers at friend's houses, stay with Grandparents and go away on school residentials.  Eventually you find yourself (as I often do with Theo) texting them to see if they are coming home that night and will it be OK to put the lock on the door!



The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.



I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.


Let's talk about death (so we can get on with living)


We really don't handle the whole issue of dying well in this country do we?  It's just not something spoken about, a taboo subject.  We are all going to die so why do we not make sure our wishes are clear so that whenever or wherever it happens those who are left behind know what to do.

We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood.  She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.

Cancer Relationship Status: It's Complicated

I guess it's time for an update on Andy's cancer treatment. It's 6 months since he was first diagnosed with stage 4, metasticised colorectal cancer.  On diagnosis he was found to have a large tumour in his bowel which has burst out of the wall and three very large tumours on his liver.  He started on a very brutal chemo regimen of 3 different chemo drugs plus a monoclonal antibody and after 8 rounds scans showed the tumours had shrunk back by nearly 50%.  




A&E is not a dumping ground

Before children  I had never paid a visit to the local accident and emergency department as an adult.  When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.

Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.



For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.

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