When Life Gives You Lemons: Danny Germain

Here's another interview as part of my When Life Gives You Lemons series.

 I've known Danny and his family for many years.  Danny's step-mum, Marion, was one of Andy's closest friends and he turned to her for coaching support to help him with the mental strength he knew he would need when he was diagnosed with cancer.  Marion was also one of Daisy's Godmothers.  Danny was a small boy when we first met him and it was years before we were entrusted with the secret that Danny had carried with him since he was little.

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

Snakes and Ladders

I haven't updated for ages, once again the poor blog has been neglected.  My life has been taken up with lots of writing projects, some freelance commissions as I try to earn some money and lots of opportunities to speak and share my story.

Sharing my story - that's the common theme in everything I've been doing recently, not just to simply share my own story but in doing so hopefully encourage others to share theirs or even be a voice for those who cannot share theirs.  I want to share our story because talking about Daisy and Andy keeps them alive, it helps people to know them as people, not the pieces of an awful tragedy.

I find it therapeutic but it is also emotionally draining, I watch the faces of the people in the audience and I see their reactions as I speak.  Some people inevitably cry.  But the more I share the more people open up with their stories and that must be a good thing.


I've been involved in a couple of "Was this in the plan?" versions of Death Cafes over the past few weeks.  Amending the traditional "Death Cafe" format to include conversation starters and an opportunity to share my story to demonstrate to the attendees that it's OK to talk about death, it's actually quite liberating.  There was a lot of laughter at both events and there will be more, I promise.

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

Cancerversary

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!

Rarer than rare and a confirmed diagnosis

Last week Daisy had her whirlwind, multidisciplinary admission into Great Ormond Street where, following gargantuan planning and co-ordination efforts we managed to compress the equivalent of a month's worth of consultations and procedures into a 5 day stay.

The week started off under the ENT team where Daisy had an airway assessment (some scar tissue on the larynx but structurally OK) and removal of her adenoids.  This was the second set of adenoids she had removed, 6 years ago the first set were taken out together with her tonsils but very rarely they can grow back, and as we know with Daisy rare is a word she is very fond of!

Happy Birthday Daddy Pig!

Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy's world she is Peppa, Jules is George, I am mummy pig and Andy is Daddy Pig.  It is an absolute sign of affection if she calls you "Pig".  Andy bears a lot of similarities to Peppa's daddy - he likes to hide away and read his paper, he's not very good at keeping fit, he loves chocolate cake and he often gets things wrong which mummy pig has to sort out!!!  But most of all, Peppa loves him, just as Daisy loves her own Daddy Pig!

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????

The Waiting Game....

We know the waiting game well, we parents of children with additional or medical needs.  Waiting for results, waiting for appointments, waiting for confirmation, waiting for the post, waiting to see if the treatment is working, our lives are a waiting game interspersed with rushes of adrenaline when the waiting stops momentarily and before we have to move onto the next thing we are waiting for.  But the waiting never stops, there's always something that could help, that may make a difference, that will provide some support - it's part of the special parent job description "must get used to waiting".

Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.

Trying to keep my head, when all around me are losing theirs.....

Daisy had another hospital stay this week, another surgery, another anaesthetic.  She had to have her Hickman line (the central line tunnelled into a main vein which rests near her heart) removed and a new one place in a new vein as the old one had been repaired once and was at risk of breaking and also was colonised with bugs which we were just about keeping under control but which could have caused sepsis at any time.

I'm losing count but by my reckoning that's 9 central lines she has had in her life (with the scars of insertions and removals crisscrossing her chest and neck to prove it) and close on 60 anaesthetics for various surgeries and procedure.....more than the majority of the human population will experience in their lifetime.

I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.

Throwing starfish into the ocean.....

I bought myself this necklace this week, I had just picked Daisy up from an overnight respite stay at Shooting Star Chase and dropped her off to school and I was in town picking up some bits I needed when I saw this necklace in a window, and I had to have it.

It wasn't that I wanted to treat myself to something pretty, it was the starfish that drew my attention.  I have always loved starfish, they have a special significance in my life.  I remember happy family holidays on the Gower Peninsula in Wales rockpooling with my Dad and finding starfish and anenomes and sea urchins and taking our sea treasure home to look up the names and species in my Spotters Guide to Wildlife Book.

You are beautiful, no matter what they say...

I'm not really the biggest fan of Christina Aguilera but her song Beautiful has very special significance for me.  When Daisy was born she was immediately transferred to the neonatal unit at our hospital.  There was always a radio playing in the background during the long weeks she stayed in the unit, when she arrived it was just before Christmas and the soundtrack to those early days was all the festive favourites, but as the days wore on and the Christmas season passed (and the tree outside her window began to grow leaves) the songs were replaced with the regular mix that is endlessly played on Magic FM, London's easy listening station.  And this song seemed to be on a lot....

"You are beautiful, in every single way, words can't bring you down..."

A Good Day

Yesterday was a good day, not anticipated to be as it involved several appointments at Great Ormond Street.  As we live in London, albeit in the suburbs, our appointments tend to be scheduled for later in the afternoon, however anyone who knows London traffic knows that it's often easier to drive out of London than to drive around London.

Having picked Daisy up from her school it then took me 90 minutes to drive the 14 miles from school to hospital, 90 minutes of roadworks, delays and diversions with a little girl in the back of the car who doesn't like to sit still for too long and no-one else to entertain her.  The only CD in the car suitable for Daisy was the Singing Hands Christmas CD so on a rainy May afternoon, stuck in gridlocked London traffic Daisy and I sang and signed Christmas songs - shall we refer to it as a little seasonal rebellion rather than the actions of a desparate mother?

Of course once I drove around and around the streets of Bloomsbury looking for a place to park which the ever vigilant Camden Council parking posse would approve of, I was late for our first appointment.  This was with our Stoma nurse, a very important appointment as with four stomas Daisy needs a lot of help from nurse specialists.  I was even a bit late for the second appointment but I always assume the clinic is running late (normally delayed by parents with me with a list of questions) so it wasn't too bad.  Appointment two was Orthotics.

This be the Verse....

I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...

It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...

Simple Pleasures

The simplest pleasures - I decided to travel to Great Ormond Street by train yesterday as I had been struck with the winter lurgy and couldn't face driving - Daisy loved the train, thedouble decker bus and the taxi, she waved at everyone, rang the bell on the bus and couldn't wait to get to school to tell her teacher about her big adventure. Sadly the tests at the hospital were inconclusive and didn't give us any answers to why Daisy continues to vomit so much bile despite her gastrostomy being on free drainage all the time but this was compensated for by the joy in Daisy's face on the journey there and back. It's a rare occasion that we actually thank Transport for London for being the highlight of the day!
And here are some more recent pics of life with Daisy...

A kiss from mummy before going to school

Not too happy about having to leave school early for a hospital appointment

A bed fit for a princess (and Donald, Minnie, Oso, Peppa...)

Surgery Plans

Oh my goodness, a whole month has flown by and I have not updated this blog - big apologies!!!  I think I'm going to cut and paste some of my statuses from Daisy's Angels (www.facebook.com/daisysangels) from now on so that those who don't use facebook can still see what is happening in our lives...

It's been a funny few weeks, lots of real progress in terms of plans for Daisy, more emergency trips by ambulance and time at our local hospital and we are even managing time at home - for the first time in years I'm actually getting to spend part of the summer holidays with all the children under the same roof.

The biggest news is that we had our much anticipated meeting with Daisy's surgeon at Great Ormond Street.  This was the meeting to discuss whether or not a colectomy was an option for her and whether he was even prepared to carry out the surgery.  Andy and I had talked and talked about this prior to the meeting, veering from being 100% sure we wanted to go ahead to deciding that it was not an option as there were no guarantees.  In the end meeting with the surgeon reassured us of the safety of performing the surgery, he will not perform a full proctocolectomy as this is just too big for anyone let alone Daisy, instead he will take out most of her large bowel which will hopefully massively reduce the colitis symptoms she experiences every day.  It will also mean that she can come off the drugs which supress her immunity and render her at risk of infection and we can treat the colitis more conservatively.  This will not be the only surgery Daisy will have at the time, Daisy's Urology surgeon will also perform surgery on her bladder at the same time to help manage the symptoms of it's deteriorating function.  Initially the plan was to form a vesicostomy, a stoma, from the bladder into her abdomen to allow urine to drain out into a nappy.  After much consultation and discussion however everyone agreed that this was not an option for Daisy, a little girl desparate to get out of nappies.  Instead along with the colectomy surgery Daisy will have a Mitrofanoff procedure where the appendix which will be removed as part of the colectomy will be used to form a channel from her bladder to her abdomen allowing us to catheterise her intermittently.  Individually these surgeries are big, performed together on a girl who is not in optimum health they are huge.  She will need to spend some time post operatively in intensive care and it is likely that we will be looking at another prolonged stay in Great Ormond Street, however our hope, which comes with no guarantees, is that once she has recovered from the surgery, we can reduce some of the drugs she is on which have such awful side effects, her pain may be more manageable and she will be less susceptible to the infections which often lead to emergency trips to the hospital.  Making the decision to go ahead with the surgery was the hardest decision we have had to make for Daisy - we don't know if it will make things better or worse but the main thing that swung it for us is that she or we can't keep going on as she is.

The pain she experiences, mainly at night, is getting worse - she now has regular doses of morphine plus ketamine and then when this doesn't work sedating medicine to help her sleep.  We are seeing a big deterioration in her health, her hair is falling out, she is getting tireder.  But her lust for life is immense - she managed very few days in school this year but every single day was packed to the brim, she won a medal in sports day, had fun times with her friends, learned new skills.  She is vocalising more and more, singing away to herself in bed and her hands never stop signing.  She has so much she needs to do and this is why we made the decision to go ahead with the surgery - desparate times call for desparate measures so although it doesn't have any guarantees to take the pain away we just hope that it will keep her hospital trips down and improve her quality of life so that she can enjoy the things she loves in life.

In the past month we have called 999 three times, each time Daisy has spiked high temperatures and developed sepsis, mainly from the bugs (ecoli & candida) which are permanent residents in her bladder.  I used to drive her to hospital myself when she became ill but she is going downhill so quickly now we have been told not to risk it, so now the whole neighbourhood knows when Daisy has gone back into hospital.  But as quickly as she goes downhill, Daisy can bounce back once she has had enough doses of IV antibiotics.  So the moment she can come home we have been out and about having fun as a family.  We visited Peppa Pig World earlier this week - Daisy was beside herself with excitement, as everyone who knows her knows, she adores Peppa Pig, almost as much as she loves Mickey and Minnie.

We are keeping everything crossed that we can also manage a trip to Devon towards the end of next week, Daisy will be able to meet her new cousin and we will be able to have a lunch to celebrate my mother's 70th birthday (Daisy will be in Great Ormond Street when it is Grandma's birthday so we are having an early celebration).  We have been given a date of 9th September for Daisy's surgery, this gives us a few more weeks of family time and also hopefully gives us a chance to be out of hospital in time for Christmas.  We are in Daisy's hands as always but have learned flexibility and whatever happens we will adapt to make the best of the situation.