A roundup of ripples and reflections
The rain is loud on the roof above me, as spring nominally eases towards summer. There is no doubt that the days continue to grow longer and the flowers continue to blossom, in their preordained way. Life has been busy; interwoven through my days and nights are my thoughts of Neve.
As I am wont to do, my list of ideas and stories to share has also blossomed, rather sharply. I find it all too easy to become immobilised by my desire to write in depth about a multitude of topics. Rather than be silenced by the general chaos in my brain, today’s writing will be a gathering of some of these ideas and stories. A few of these may eventually turn into longer pieces. What comes next is a roundup of ripples and reflections, from the previous few months of speaking about Neve.
What a joy it has been, to share my child with others. Some may ask how can you do it, or say it must be so hard and I could never do that. What they don’t know is what a comfort it is. Neve was devastated to be dying; her grief will always be a harrowing ache in my stomach. I can’t change that sorrow, hers and mine, nor the reality of her death. Neve wanted to grow up, to be an adult and a parent. She talked often about wanting to be a doctor and to be able to have an impact on other children, like her.
What I can do for her now is to amplify her impact by continuing to send her story and her ripples out into the world. There is joy in knowing that I can still mother Neve in this way. If only she could know the next chapter of her story.
Sometimes I forget and absentmindedly imagine showing her a painting or telling her how awkward I felt, when the laughing banana kept laughing longer than could possibly be socially acceptable. I know she is dead but oh she would have laughed at me, holding her shrieking squishy fruit up on a stage. Somehow, a part of my brain can continue to day dream about conversations we might still have. I don’t know whether the fanciful moment of togetherness is worth the next instant, when reality penetrates this vision. Can forever really mean forever? My stomach knots, as the day dream shatters.
Neve’s life may be over but her story is not. And so, to add to your story, dear Neve:
This spring, I was invited to share Neve on multiple study days, including with nurses, trainee doctors and consultant paediatricians. My companion at each event was the aforementioned laughing banana, though it was joined (perhaps even overshadowed) by a great many Freddos at an event detailed further below.
Freddo, painted by Emily Tammam. To mark Dying Matters week, in early May, Neve’s doctor and I were interviewed on BBC Oxford, in person. Sadly, no laughing bananas with us on this expedition. I was also interviewed on Greatest Hits radio station.
Then, it was on to the train, the banana and I, to speak at the Together For Short Lives (TFSL) conference, in Manchester. This charity is a national children’s palliative care charity and many of the conference delegates work directly, clinically and non-clinically, in palliative care. Sharing Neve and my paintings with 300 people, almost all deeply embedded within this field, was particularly meaningful. You can read Rob Lightfoot’s reflections on the conference; I was particularly touched by his words here:
I think the thing that I was left with more than anything else was the times where the research or the example of best practice was brought back into focus through the voice of a child with a life-limiting condition, a parent or a sibling.
None more so than Emily Tammam's honest, funny and deeply moving story about her daughter Neve who was diagnosed with an aggressive brain tumour at seven and died nearly three years later, in 2023. Through Emily’s eyes we learned about Neve’s journey with the kind of insight that only a parent could convey, which amongst other things featured a list of medications as long as the Domesday Book (and her regular challenges getting the medication she really needed), care plans complete with Freddo incentives (an advanced negotiation tactic with which all parents will be familiar albeit with different consequences) and a laughing banana toy home-made by one of Neve’s palliative care team who went the extra mile in the most original way. It was a story full of love, struggle, humour, and truth. Emily spoke of the ripples of Neve’s life - her hope that Neve’s legacy will travel far and wide, touching lives in both big and small ways.
Then, it was off to London, for something a bit different. I had been invited to speak at the Royal Society of Medicine, for the London School of Paediatrics’ Palliative Care study day. I have long pondered the idea of a formal talk with a health professional, where we weave together their theoretical knowledge with the details of Neve’s story. To be able to bring both these strands together, woven into one presentation, was significant. We spoke about How and when to talk about palliative care; my paintings illustrated our slides. My co-speaker was a Paediatric Palliative Care doctor who I had met at a conference last year. Not only did we share the same first name and initials, it was clear from the start that together we could create something meaningful. Whilst she never met Neve, they would have adored each other. I can quite easily hear the howls of laughter and squeals of joy that would have been the soundtrack to their meeting. It was a pleasure and an inspiration to present together; I can’t wait for more opportunities like this.
Presenting at the Royal Society of Medicine, with Dr Emily Titherington. Worthy of its own bullet point, the excitement of the Royal Society of Medicine study day went beyond merely the formal presentation. Through behind the scenes miracles, the doctor organising the day certainly clinched the best refreshments award. Neve would have been amazed at the sight of over a hundred Freddos at the morning coffee break.
I hope the day was as memorable for the attendees as it was for me. Unlike at the TFSL conference mentioned above, most of the paediatric trainee doctors on this study day will not go on to specialise in palliative care. Instead, my hope is that they will take a palliative care lens with them into all areas of children’s medicine. If Neve’s story can help embed universal palliative care knowledge and a corresponding lens through which to view illness, suffering, dying and death, then I think I can reassure myself that she is having an impact.
Finally, a mission accomplished. Last year, I set out to fundraise for the Oxford Health Charity, with the goal of buying a cuddle cot and a cuddle blanket for our local Children’s Community Nursing team. This was the team that had cared so skilfully and compassionately for Neve. I wanted to help them ensure that other families have the same choices and opportunities that we had, when Neve died. I wrote 40 hours at home to go alongside my fundraising, about Neve’s final time with us. It was important that people could understand why this mattered so much.
At some point last year, I was thrilled to hear that the NHS Trust itself had decided to also contribute to the costs. Perhaps the public fundraising helped them understand the importance of this equipment. And now, at long last, the nursing team have their very own cooling equipment. They have already told me how significant it is to be able to offer real, meaningful choices to families whose babies and children are dying or have died.
Small plaques adorn both pieces of equipment, quietly declaring these items to be more ripples of Neve’s life.
Finally, a few reflections on my own learnings, from all that I have been doing. As time passes, I am understanding more about what I need, when I share Neve. In many ways, it isn’t so different from what I hear through work, time and again, about how patients and public who are involved with and contribute to research want to know what meaningful impact their involvement has had. This is a brewing post of its own, as I process the emotions that go alongside the experience, teasing out the things that matter. It can probably all be summed up, as it always can, by the need for engagement and connection. On a practical level, this means cameras on, audience engagement and the need for meaningful questions. Sharing Neve is not intended to be a monologue into the wind.
Now I am tired. Or maybe, I continue to be tired. It’s a profound weariness, this grief exhaustion. Sleep helps but it doesn’t mend. Within this exhaustion, the pockets of quietly painting and sharing Neve are my solace.
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Thank you for sharing Neve with all of us. Your paintings and drawings bring her easily to my mind as if I had known her personally. Thank you for your heartfelt writing about your journey and experience.
So beautifully written, pain and joy together. I think Neve sent you the Freddos at that event. I strongly believe that our lost loved ones are always with us, only not in their physical form. But they know exactly what we do, they know it when we think about them and they sent us signals and thoughts and feelings. I think that Neve is so proud of you!!