When Life Gives You Lemons: Marni Smyth

About a week ago my friend Suzanne shared a post on her timeline.  It was a Go Fund Me link for her friend Marni.  Marni was fundraising to buy a new powerchair. This chair is going to cost more than her car! Yet without a decent chair Marni is denied access to the life that most of us take for granted.  She is denied independence and the opportunity to pursue a career she loves, for which she trained and is supremely qualified to do.

Riding 100 Miles: For a very special reason

"Mum's on Box Hill again!"

Over the past few months, aside from holidays and breaks for illness I have swapped my regular running and swimming training for long rides on my road bike out into the beautiful Surrey Hills, always fitting in a coffee and flapjack in the cafe at the top of Box Hill . That is the point in my ride where I inevitably get a text from one of my children asking where I am and what time I will be home as there's no food in the house....

On Sunday 29th I will be taking part in the Prudential Ride London-Surrey 100. It's a 100 mile bike ride through London, out into the Surrey hills and back again. "Why, oh,why are you doing that Steph?" you are probably saying to yourselves.
Well it comes down to a medal. And not any medal, it's the coveted London Classics Medal.

Launched last year, the London Classics medal is awarded to people who have achieved the three premier London-based endurance challenges; the London Marathon, the 2 Mile Swim Serpentine event and Ride London 100.

Well having two out of three in the bag I couldn't resist going for the big one, adding Ride London 100 to my CV and receiving that big piece of extra bling in the bargain (together with the Ride London medal).

Daisy loved to see my medals. She was my biggest fan. She cheered me on in countless races and when she could not be there she loved to inspect my medals once I got home. She would have loved to see this new, extra-large medal and hear the story I would tell about my exploits going up the hills very slowly and down the hills very fast. I would always have to put a funny spin on the story, I would probably tell her about how the water bottle flew off my bike last Sunday as I hit a pothole in the road while going far to fast downhill.

I didn't get a place in the ballot for Ride London but as always our beloved hospice ShootingStar-Chase came up with the goods and offered me a place. And as always I will not only dedicate my race to Daisy, tucking a daisy into my hair in the morning so that she is with me, but I will use it as an opportunity to raise awareness and funds for the place that walked beside us every step of Daisy's twelve years.

ShootingStar-Chase were there from the beginning of our journey with Daisy, giving us much needed respite breaks, emotional and practical support at time when we were drowning and overwhelmed. They were there when Andy was diagnosed with terminal cancer and at the end of Daisy's life they were there to help us pick up the pieces. All of the support that was given to us was free and yet the hospice, just like all the children's hospices in the UK, receives minimal guaranteed government funding for it's services. Services which support the sickest and most fragile children in the UK for however much time they have.

So, on Sunday I will ride, not just for my extra big medal, but also for Daisy and for the thousands of life-limited children in the UK who are not expected to reach adulthood but rely on children's hospice services to ensure that their lives, however short, are the best that they can be.

Here's the link, it's the same one as always, the one I set up when Daisy died. Wouldn't it be brilliant if we could hit a nice round figure?

It's going to be hot on Sunday, it's going to be hard work but as always nothing compares to the daily challenges Daisy always faced with a smile.And of course there's the medal, I have to get that medal for her!

Happy Birthday you imperfect, beautiful thing #NHS70

Happy 70th Birthday to the NHS.

To me you are like a favourite aunt, cantankerous, imperfect but full of love and always there when you need them.

I truly believe that without the NHS we would not have had twelve wonderful years with Daisy.

NHS doctors and nurses cared for me when I was so poorly and pregnant with her.  She was scanned and monitored and eventually the decision was made to deliver her by caesarian section.

To dance like no-one is watching....

There's been so much going on here, I just have not had time to update my blog, as always though I walk around with my head brimming with words and ideas.  It's just that the paid-for words have to take precedence over my own personal musings!

The most important news is that we hit the Kickstarter target for my new children's book "Goodbye Daisy".  It's all systems go now and I'm delighted to be working with both Hashtag Press and the supremely talented illustrator Helen Braid to turn this very important dream into reality.  I want to make sure that when a child with a learning disability dies, the friends they leave behind have a book that will help them with the feelings of grief and loss that they struggle with.  At the moment publication is pencilled in for late autumn.  The sad fact is that children with additional needs are more likely to die during the winter months so it was important for me that this book was available in time.

For those who haven't seen the cover reveal on my social media channels, here it is

I really feel that Helen has captured Daisy's joy and determination!  The book will be available for pre-order in September, I will also be setting up a Goodbye Daisy website listing resources and support available for parents, carers and professionals supporting a learning disabled child through grief.

When Life Gives You Lemons: Rosie Jones

A few weeks ago I attended the Women of the World festival in Norwich.  I took part in a panel about how the role of caring often falls to women and  I also shared my story and the lessons it has taught me on the final day.  I got to meet lots of lovely readers and signed copies of my book.

I stayed with my great friend Helen Linehan.  She was also talking at the event as part of a panel about women in the media (Helen co-wrote the BBC comedy, Motherland).  On the first night of the event the team from the incredibly successful and influential Guilty Feminist podcast were recording two live podcasts, the first was a focus on the Repeal the 8th vote .  Helen took part in that session and shared her very moving story about discovering that her first child with her husband Graham, had a fatal foetal abnormality.

The second podcast of the evening featured the comedian Rosie Jones.  I got to spend some time with Rosie in the Green Room back stage and as we chatted it struck me that she was a perfect candidate for the WLGYL series on the blog.

For those of you who don't know her, Rosie is a successful comedian, she also has cerebral palsy, she also recently came out as lesbian.

I loved meeting Rosie, we had a really good chuckle about our mutual hate of so called inspiration porn.  She's incredibly funny and if you are going to the Edinburgh Fringe later this summer make sure you go and see her show Fifteen Minutes.  Rosie explains the significance of fifteen minutes in this interview...

It's never about giving up

Palliative Care. It's been in the news a lot this week.  And as I've seen yet another case of a child who needs a referral to palliative care being played out on social media I realised how little people really understand by the term.

All this week I have seen the negativity associated with the words and it has shocked me.  Because the perception that those people on social media had on social media bore no relation to the reality we had experienced.

We knew from the beginning that Daisy was life limited.  That she would not reach adulthood.  She was born with a sporadic gene mutation that increased her risk of cancer, sudden cardiac events, complex disabilities.  We know that many of the children with the same mutation do survive to adulthood, there are some who are in their forties even.  But Daisy was always going to be different.  She seemed to have an extreme form of the syndrome, potentially a secondary undiagnosed syndrome at play.  It was clear that there was too much going on and too much need for constant medical intervention to be conducive to a long life.

Andy and I accepted that from the offset.  We knew our time with Daisy was finite.  We were just determined to make the most of our finite time with her.  And that's where palliative care was so important.

Daisy was referred to the hospital palliative care team when she was seven.  I, like many others, assumed that palliative services were only brought in at the end.  I now know so much more.  That early intervention by palliative services was crucial, it contributed to ensuring that we were able to focus on Daisy's quality of life.  In fact the words used regularly by the consultant caring for her were "symptom control".  Daisy's pain was getting out of hand, she was on so many drugs it was difficult to know what was a drug side effect and what was pain.  With the help of the palliative consultant we were able to wean Daisy off some of her drugs so that we could identify which were the most effective in treating her pain.  A symptom care plan was developed so that everyone caring for Daisy understood what medication and doses were available and how to escalate them.

Some nights at home when I struggled to control Daisy's pain (her pain was always so much worse at night) there was always a member of the palliative team on call who could advise me.

We discussed our priorities for Daisy.  Optimising her time at home, minimising her time in hospital, maximising her quality of life and preparing plans to ensure that when the time came we would know and we would be able to support her in having a dignified death.

We made it clear that we wanted to ensure that Daisy was able to do the things she wanted to do; go to school, spend time with her family, be a little girl.  With her team we decided that as the window of Daisy being able to do the things she wanted to do closed we would constantly assess the situation.

I look back now and we did exactly that.  Daisy's deterioration was slow but it was obvious.  She lost the ability to walk, she developed severe seizures, her ability to communicate was reduced, she became more and more lethargic but this happened very slowly over a prolonged time frame and with the help of the pallitiative care team both at the hospital and the hospice we were able to support Daisy and optimise her quality of life.

Any procedure, test or surgery was always decided against the main criteria; "Will this improve her quality of life".  She had a couple of big surgeries in her final years, I know that there were discussions at an ethics panel about whether it was right to put her through more major surgery.  In the end we took the risk, her final surgery, while Andy was still alive, made a huge difference to her pain and we were glad that everyone agreed it should go ahead.

We talked about end of life plans.  These were always very open, frank discussions.  The doctors could not give us answers about when she would die or how, they did not know themselves.  She was always defying the odds, she would be overwhelmed with sepsis and we would prepare for the worst and then she would turn the corner.  We knew what all the options were however.  We allowed ourselves to think of the end of her life so that when it came we would be prepared and know what we wanted for our girl.

The irony was that those conversations with the palliative care team were even more important because it enabled Andy and I to be on the same page about how we would support Daisy when she was at the end of life stage.  We both agreed that we would not go down the route of a tracheostomy for her if that was the only option, she was already dependent of 24/7 intravenous nutrition to live and had four other stomas beyond her double lumen hickman line.  At least after Andy died of cancer just before Daisy's 11th birthday I knew that we were both in agreement and these things had been discussed.

Daisy's health deteriorated rapidly after Andy died.  That window of life quality I had discussed with our consultant was closing.  I remember the Christmas before she died, I just wondered how much we were now playing God.  She was struggling to keep going, her frustration was manifesting in challenging behaviour, she was becoming tired, she was losing more and more of her skills, we were losing Daisy.

When Daisy was taken into intensive care overwhelmed with sepsis it was still difficult to see that this was the end.  We had all seen her turn the corner from this point so many times.  But this time was different.  Everything the doctors tried did not work.  They had worked before.  She was struggling and exhausted.  She was sedated and a breathing tube was put into her lungs and she was attached to a ventilator.  I hoped that it would allow her body to rest and fight the sepsis.

But then her heart stopped beating and as I ran into her cubicle to see the doctors performing CPR on her I knew that I had to let her go.  I knew Andy would say the same.

I asked the doctors whether we could transfer Daisy so that our hospice team could come and switch off the ventilator at home.  I knew from previous conversations around end of life plans that compassionate extubations could happen at the hospice so why not at home?  But she was too unstable, she risked  dying in the ambulance en route.  This was not what I wanted.

The doctors successfully started Daisy's heart again but I knew that she was gone.  They talked to me about starting dialysis, about other life support interventions but I knew that our window had finally closed and it was time to say goodbye.

 I let my girl go.

It was the hardest thing I have ever had to do but I know that despite the fact that we were in a hospital, in a highly medicalised setting, we gave Daisy a good death, she was surrounded with love, we had given her everything we possibly could, we had left no stone unturned in ensuring she had the best life possible.

Our palliative nurse was with me when Daisy died.  We had known her for many years.  She helped the other nurses remove the medical equipment, she liaised with the hospice and the undertaker, she knew what to do .

Daisy's palliative consultant cried.  Just like many of the nurses and doctors who had cared for Daisy over the years they had got to know the little girl beyond the patient and they were as devastated as we were.

Daisy was moved to the bereavement suite on the ward and nurses came in and helped me wash her.  That evening we went home .  Our hospice nurse had set up a cold mattress on Daisy's bed and when the undertaker arrived they tucked Daisy back into her bed for one last time.  She was home.

Palliative care gave my daughter a good death.  It gave us options.  It gave us support and most importantly it gave us the gift of time with Daisy.  I accepted her life was limited, deciding to no longer pursue active treatment unless it was to enable her to have a good quality of life was empowering.  It was never, ever about giving up.

I have shared our story because I have realised that there are so many misconceptions about children's palliative care.  The reality is sometimes there is no cure and children die,  sometimes doctors do not have all the answers, sometimes medical science can only go so far.  It's about time we had more open conversations about these issues.

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