So here we are,three weeks later, following a mammoth 8 hour surgery at Great Ormond Street Hospital, Daisy is stable enough to be transferred to our wonderful hospice, ShootingStar-Chase for a two week rehab stay before coming home.

Once again she has defied the odds, amazed the medics and charmed everyone who has come into contact with her.  Her team have been incredible and we are so grateful to her surgeon and his team who gave us our girl back, albeit with even more small bowel missing, some blockages and adhesions unravelled, stomas moved and replumbed and a few surprises including a previously undiagnosed duplex ureter and a Meckel's Diverticulum identified and dealt with. 

Daisy signing "home" to her Daddy on the way to the operating theatre

We are still struggling to get on top of her pain but hopefully the meds can be tweaked and managed while she is at the hospice.  Those 8 hours in theatre were the longest ever, it seems each surgery gets harder and harder, you never get used to it but with all her complexities this was the most risky and the hardest for us to deal with.  We are just so pleased she is out the other side and continues to defy the odds and grab life by the hands.  A skill she clearly gets from her Dad - this was the first long hospital stay since Andy's cancer diagnosis and it's been tough being away from him, from the other children and being with Daisy - all of them have needed me and I have needed all of them.

So tomorrow will be a new chapter, the next stage in Daisy's healing coincides with the 7 year anniversary since she first started on Total Parenteral Nutrition (TPN), the intravenous nutrition that she relies on 24 hours a day, 7 days a week to stay alive and thrive.  The 4th November also marks another new anniversary in the Nimmo Family Calender - 1 year since Andy's cancer diagnosis. It's been an incredible year for us, "the best of times, the worst of times" the least few months especially have pushed us to our limits but as always we have found strength and reserves we did not know existed.  Andy and are not inspirational, we are ordinary people thrown into extraordinary circumstances - fucking surreal circumstances actually, our lives would never make it to a soap opera storyline because no-one would believe it!

To mark this incredible milestone, I've let Mr Nimmo himself loose on my blog.  Those of you who know Andy well will know he doesn't hold back so be warned there is swearing.

 Happy Cancerversary Andy

Happy cancerversary to me!  4th of November 2014 a day of filled with 'Fuck!' Really? Oh for fucks sake, cancer? You couldn't fucking write this' looking at each other with incredulity and laughing once we got our heads around it. Very quickly we had a plan and started the chemo the day before my birthday 3 weeks later.

So it's been one orbit around the sun and what has happened?

Well, first things first and the latest results from the scans. The treatment for the SIRT to shrink the tumours in my liver has been fairly successful as there has been shrinkage, but in the one crucial tumour it did not shrink in the way it was needed (away from the blood vessels) in order to render it operable.

But the SIRT seems to be the gift that keeps on giving as it has also given me radioactive induced liver disease, a very rare complication and my liver is not in a fit state for any intervention surgically. I'm also off chemo as my body needs all its resources without having the poison to deal with in order to get it healthy. 

My primary tumour has become active and I've got another small tumour in my pelvis, which is not really a worry. 
and the pulmonary embolisms kept in check by daily injection.

So it's a delicate balance in my recovering and making sure the primary doesn't progress in order to get to the next step. 

I was told that my cancer is incurable on day one and it means living with it to a greater or lesser degree dependent on how the disease progresses or not. 

So If someone asked you what would you do if you had a year to live? What would you focus on, what would be important to you what would you feel at the prospect of a limited life?  Well fortunately as a family we have taken every opportunity and lived with mortality since Daisy's birth and have had many talks about death and dying. For me this is one the keys to being happy, living without fear.

As a coach and trainer, I have worked with so many people in the past on changing limiting beliefs about themselves and opening a new way of seeing themselves without the limits they have imposed on themselves. For me it has been straightforward to deal with things, my favourite phrases are 'fuck it what's the worse that can happen?' If you already know the bottom line and are not afraid of it ends then fear has no power over you..
When you have followed a process and dealt with almost every objection and take responsibility for things its easy you have control and influence in you choices. Practise what you preach.

You have choices in how you behave and respond to anything and understanding for what caused it and what options you have. I choose to be realistic and positive and it's served very well for the last year and will next too. that has been there but has become more important to live well. 

Everything I worked on with my core values and what enables me to to get the best from this experience has worked brilliantly.

I achieved my goals set out and have arrived at the point to and be working on year 2 which of course will have Glastonbury as the 6 month goal! (Yes - we struck lucky in the ticket lottery yet again!)

Time is a finite resource and 'Spending time' is such a throwaway phrase until there is a real cost of not doing so. Things like being with the children but the thing is you can't force them to do that just be open to the opportunity when they really want to. 

It has been a very tough transition for them to adjust to the circumstances with everything else going on in their lives and they have done remarkably but we have always encouraged self reliance and the attitude of if you want something you make it happen and not accept excuses. Our role is to make them as independent as possible and able to make effective decisions for themselves. It's served Steph and I really well and along with being resilient. 

I'm starting hypnotherapy again as I really enjoy it and want to explore my subconscious and how I can harness that mind body connection. No 'Angels' or 'magic' or any quantum conscious bollocks just good old classic Milton Erricson and newer NLP techniques to see if I can reduce the pain from peripheral neuropathy and use internal recourse to help heal my liver along with the plethora of drugs I'm taking.

The sheer physical toll of the 17 chemos (each a 3 day infusion of some of the most potent chemicals known to science), the radiation, the drugs to manage the symptoms and the side effects have hit me hard, especially the last 3 months but I'm getting stronger day by day in, small increments. You live with Cancer fatigue which is so beyond tired and have to just adjust to what you can do rather than what you unable to. 

So the cancer is incurable which is very different from terminal, by the way, and to maintain and take the forward steps via chemo, radiation therapy and any thing else that will reduce or maintain. Being off chemo will allow my liver the chance to recover but at the same time monitoring the activity going on. i can live with it like many others and still have a great quality of life.

Friends, this has been fantastic as I have had such love from friends already close and have helped us practically and just being there having a cup of tea and a chat.  But also people I haven't seen for years that I've reconnected with and new ones. I'm so grateful for all the lunches, coffees, beer and most important sharing time with them. it gives me such energy and boost almost vampire like.

I also working on a couple of projects which I'm very excited about and will no doubt be posted here when the time comes.

I'm so sorry not have been able to keep up with people I so want to see and meet especially the last few months and the open offers still there but being so ill recently put the halt on that just for the time being. 

There have been so many times over the last year where we have been laughing and weeping tears from the banter, silly pictures and piss taking, being told to check my 'cancer privilege' by my 16 year old daughter Xanthe and my boys telling me to 'just get on with it, anyone would think you have something wrong with you'!

Humour, having fun and new experiences have been essential to feeling the way I am after a year and will continue. It has of course at the same time taken me to very dark places in danger of not being able to recover but I bounce back, seeing the possibility of dying up close is such a huge thing to process, part of which is saying to yourself 'this not the end, I will get better by facing it and of course 'fuck it what's the worse that can happen'.

I have experienced the some of worst pain in my life but it always fades as you cannot physically remember pain in the same way as experiences and emotions long past. This makes it easier sat in the toilet at 4 am chanting 'all this will pass' along with the expletives that actually help to reduce pain. 

The most emotional time is what I might miss out on the future with my family and my soul mate is the thing that cuts the deepest and the toughest to get around as  its a primary biological and emotional driver and it's a challenge but it can be lived with.

All of this of course would be redundant if I hadn't had the first class medical support which has made the whole process easier and relatively stress free as you don't worry about appointment and scheduling as they are flexible to our needs.

The cornerstone is of course is Steph, I know you all should know by now what an amazing and incredible person and how much she achieves, from running to every day dealing with all phone calls from all the people involved with Daisy's care the meetings and appointments every week and how she has the massive respect from all in how she not just survive but thrives. I mean she is a paid journalist and writer for the Guardian, the Independent and the Huffington post for fucks sake, she just makes it happen, no limiting beliefs.

On top of all of that helping me at every opportunity to make sure I'm keep taking the drugs, eating and hydrating. I would not be here if it wasn't for her and the highly skilled medical professional team dedicated to getting the best from the situation.

So we go again for another orbit around the Sun and the quote from my favourite film of the year (the Martian) hit the nail on the helmet:

 'At some point, everything's gonna go south on you and you're going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That's all it is. You just begin. You do the math. You solve one problem and you solve the next one, and then the next. And If you solve enough problems, you get to come home'

I Couldn't put it any better.

So I can't wait for the year coming as it will be different to the one with new experiences and the unexpected. I mean this time last year I had no idea I would meet and hang out with Dave Grohl! Another great example of making something happen.

Onward and upwards! we go again! for another year to celebrate Cancerversary #2  - 4th November 2016!

Parenting - the toughest job in the world (and don't expect the little darlings to thank you either)

We are currently entering week 3 of Daisy’s stay at Great Ormond Street hospital.  On the 14th October she had an 8 hour surgery to her bladder and abdomen aimed at sorting some ongoing problems and creating some solutions which will improve her quality of life.  Thanks to the wonderful, skilled team looking after her the surgery went really well and she is recovering slowly but surely, the ongoing issue, as always, being the management of her pain .  Of course Daisy loves to move the goal posts every now and then, this admission she developed an extreme sensitivity to intravenous morphine which means we really can’t use it.

It’s been so difficult dividing myself between here and home, making sure Andy is eating OK, rushing to meet him at outpatients appointments.  And while our other three children are now teenagers, in many ways they need me now more than ever to be a listening ear and to help source the lost travel card from a distance (I have special skills in this department). 

Conceal it, don't feel it

I have come to realise that over the past year my life has been guided by Queen Elsa of Arendelle.

Yes people, I now look to a fictional animated disney character for guidance.

Time and time again, when it all gets too much and things get me down I channel Elsa, scattering ice crystals into the air

This works really well, try it.  In times of stress remind yourself, what would Elsa do?

It's times like these you learn to live again

It's funny the opportunities adversity can throw at you.  We have found this with Daisy, we have experienced the lowest of lows at times but also have had a world opened up to us that would never have been possible if we had not been the parents of life limited child with her level of complexity (and huge personality!).

Hitting the Wall

Marathon runners know this term well - hitting the wall.  That point in the race where your reserves have run out, you legs are screaming in pain and you have to do all you can to overcome that voice in your head which is saying "you can't do this".

We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.

The Medical Symposium, the Ordinary Mum and the story of an Extraordinary Girl

I'm writing this in a somewhat jetlagged state......

Yes!  I made it, following my successful crowdfunding campaign I was able to fly out to Seattle to attend the Costello Syndrome Family forum and more importantly present Daisy's story at the Rasopathies Medical Symposium.

When your child has a rare disease (and an even rarer manifestation of the syndrome) then the chance to meet with other families and to discuss issues with the doctors at the forefront of research into the disease is immeasurable.

It is rare to be in the same room as children and young people who look so similar to my own daughter but at the same time it was bittersweet as it really brought home to me how different Daisy also is to the other children who share her gene mutation.

A Landmark Supreme Court Victory for Children Like Daisy

There was an interim budget last week in the UK.  Another round of austerity measures, more cuts,  more worrying times for those of us, forced through circumstances, to rely heavily on our benefits system.

On the same day as the budget, there was also a glimmer of hope for parents caring for some of the sickest and most complex children in the UK.  You probably didn't even notice it, but there was a landmark victory in the Supreme Court. It unanimously ruled that taking away Disability Living Allowance (DLA) from a disabled child after he had been in hospital for more than 84 days is in breach of his human rights and unlawful.  This was the first time the Supreme Court has ever found for a claimant in a Social Security Case.

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