Thank you all for being here.
In her last days Alice said to us that she did not want to be forgotten which was a bit silly really as it would be impossible to do so. Alice is of course special to Jennie and I but what is extraordinary is the fact that she became special to so many other people. If you look at the messages we have received there are certain words that crop up often to describe Alice: stoic and inspirational are repeated phrases.
With the cards she was dealt in life she had every reason to be bitter but instead she was sweet, that is what I think people recognise.
Everyone here helped Alice through her life and I believe in return she helped us all too.
In September 2001 the world changed for us when Alice became very poorly and was taken into the Norfolk and Norwich where she was diagnosed with a brain tumour, We did not know if she would survive.
We are eternally grateful to the whole of the NHS and particularly the doctors and nurses who cared for Alice starting at Great Ormond street and the neurosurgeon Dr Andar who operated for 12 hours and who saved Alices life.
We knew however this was just the start, Chemo was to follow. Our world was shaken. We were in shock. We looked into the pit of despair but decided not to descend into it. Early on we made a conscious choice not to become self-pitying, we stepped away from fear. We made Alice the focus of our efforts. As Jennie later said to the question “Why us” her answer was “why not us”. We knew from spending time in hospital with Alice that our situation was not unique, and we soon became aware of how fortunate we actually were.
Living in a children’s cancer ward opens your eyes. Alice progressed well through a rollercoaster of ups and downs but there were children there that were not so fortunate, meeting children one month and finding they had become paralysed, or died the next was shocking. We felt that we were truly fortunate, and we were.
We didn’t cope alone we were supported from the start, a whole host of people helped, for instance at Great Ormond Street Emma’s mum did our washing and at Addenbrookes Ed brought us home cooked food and smuggled in bottles of wine, friends and family visited and did practical things, we were given strength and we adapted
A decision was made to carry on as normal as possible. We could have wrapped Alice in cotton wool but instead we let her carry on as before, a little girl who enjoyed chopping vegetables with a sharp knife from a very young age and was ironing tea towels at the age of 4 because she wanted to do what we were doing.
Alice was full of life and needed to do things. It was her that carried us.
When she started primary school she was given a quiet place to rest when she needed it, she instead took every opportunity to wander the school and go and say hello to the teachers in the various classrooms as they taught, she must have caused chaos but she was welcomed.
The head and teachers at the school helped Alice as best they could, it was truly appreciated.
We got back into a normal life but a few years later the tumour returned. It returned 5 more times over 21 years and each time we reverted to what we had learned: one step at a time, one day at a time
Addenbrookes took care of us too, James Nicholls, and ward C2 looked after Alice when she was a child and Fiona Harris as an adult. These consultants put their hearts minds and souls into their jobs. We are in awe of them.
Don’t think that hospitals dominated Alice’s life though, that was only for a short time, usually there were years apart, the longest being the 9 years between 2009 and 2018.
I worked from home so Alice and I would go on long walks, to explore places we had not been before.
I think secretly we both hoped that we would come across some new cats or horses along the way, ten minutes stroking a cat was considered the minimum needed and I have lots of pictures and videos of our encounters with cats, dogs, horses and frogs.
Alice loved nature very much and she loved spending time in the countryside and garden.
Operations, radiotherapies and chemo did limit Alice’s abilities. Her poor short term memory meant that academically she didn’t do too well.
She struggled in secondary school, her absences meant that there was a distance between her and her classmates, teenage girls and boys can be a bit cruel.
Fortunately she was held back a year and was reunited with friends she had grown up with: Jamie Maw, Jamie Williams, Mathew Freeman, Tash Byram and others.
Alice wanted to work at Tesco, and they kindly let her do work experience whilst she was at school. She could not work there for real till she was 18 so she volunteered at the British Heart Foundation till then.
In the bakery at Tesco, she met Emily, they became great friends. Her colleagues at Tesco in Sheringham are a lovely group of people we welcome some of them here today.
At home Alice busied herself with cooking, baking, arts, and crafts, she had been making things since she was very young in the playrooms of hospital wards and at home. As she got older her work got finer.
I’m hoping to put all her work on a dedicated section of her website alice-johnson.uk
She loved playing video games which she first discovered at the hospital, in 2003 we bought a PlayStation 2 from Woolworths in Sheringham for her to play at home. Once we discovered Ratchet and Clank there was no going back! Most recently The Legend of Zelda – “Breath of The Wild” had become her go to game, beautiful music from which is being played today.
Sometimes people hearing Alices slight speech impediment assumed she was less capable that she was, this did annoy her!
Alice was not academic, but she was intelligent. She had a wide range of interests in nature and science. Recently she discovered quantum mechanics and was fascinated. We discussed abstract philosophical ideas such as “Plato’s cave” and she understood.
Alice was not all goody goody either, angry at people who did hurtful things, she was competitive in her gaming and held no hostages.
When playing board games; her strategies were outrageous (as Kirsty will attest to). Her ability to stab baddies in the Assassins creed games was disturbing to watch!
She supported the underdog, her favourite bird is the potoo (poe2), a strange looking bird with a surprising call. She liked the “quirky”, the unusual, the unloved.
Alice wanted a non-religious service today.
She disliked the strict dogma and petty sectarian nature of the churches as well as the many scandals,
As a Christian I respect her choice. If “God is love” as I believe, then Alice is loved.
When her friends left for collage and work she became very lonely, it’s difficult to make young friends in a place such as Sheringham.
During and since the pandemic she got great comfort from video chatting to people at the Teenage Cancer trust, Clic Sargent and The Big C, these official sounding organisations are actually real people like James and Tonia from the Big C who connected with Alice and helped her through her issues.
They possess real humanity. We are so very grateful and welcome them here today.
Just before her tumour came back I went with Alice to help her volunteer at the Yesu foodbank and cafeteria in Sheringham, we all hoped for a better social life for her. Sadly shortly afterwards the tumour returned for a last time but there was no more treatment, it would have been too dangerous.
Alice wanted longer, she arranged a video talk with her consultant to ask why the treatments were stopped but after a few days came to terms with the decision and decided instead to use the opportunity to say thank you to Fiona for everything she had done. Alice never got to make that call but we did it for her and we thanked her on Alice behalf.
Despite feeling weak Alice’s last two days were perfect. It was as if they had been written by a kind playwright. Her previous evening was spent watching a film, chatting and laughing with her friend Tash who slept over and the next morning. Emily her friend from Tesco come around for a chat and to play some retro games well into the afternoon. Alice was filled with smiles the whole time.
She retired to bed and developed breathing difficulties in the early evening, at the bedside was Jennie, Myself, Kirsty, Tash and Tash’s parents as well as Jennies sister Bridget, She was surrounded by love. when Tash’s sister Aliha (who is hard of hearing) came to say goodbye Alice managed to raise her hands and form a heart with her fingers. A beautiful gesture. she knew she was going and she was accepting of it. She told us in a weak voice “thank you, thank you, thank you”.
Alice lost consciousness not long afterwards and stopped breathing in the early hours, about the same time of day she was born (2:10am). I know everyone here gave her love, she gave lots of love back.
Alice is a better person than I am but I hope that I can become more like her, to face challenges find that inner strength and enter into the joy of life.
Thank you Alice
You are an inspiration
We will NEVER forget you.
You can download a PDF file of this here: About Alice