Cancer - Your Story : Our New Normal
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My name is Chris, I recently turned 40 and I was born and brought up in Leeds.
I somehow ended up at Dartington College of Arts, studying for a degree in Theatre and Music from 1992 to 1995. Although the degree hasn’t been a great deal of help in finding gainful employment, I did have a great time – and even met my wife there, Jo.
Not long after graduation, I moved down to Weymouth in Dorset to be with her – a lovely place to live. I then convinced a friend to give me a job with his magazine publishing house. For four years I was the editor of Minor Monthly – a magazine about Morris Minors. In 1999, Jo and I were married and I managed to blag four Morris Minors to act as our wedding cars.
I was also put in charge of the running the websites of the various magazines we published – which meant I built up enough skills to escape the world of classic cars to work for Dorset County Council as the e-Communications Officer.
We were pootling along quite nicely. I had a good job, Jo was teaching kids how to play the flute and other instruments, we had a lovely house and an even lovelier son, who was born in 2001.
Then, in 2003, Jo was diagnosed with a brain tumour. This shattered our world, and changed the way we lived. Southampton and Poole hospitals became regular haunts and Jo and I researched every possible way that she could help herself.
In 2005, we had our first contact with Weldmar Hospicecare Trust, when Jo began to attend the day hospice in Weymouth on Mondays and Fridays. This was a fantastic experience for her – and she absolutely loved working with the diversional therapist in the art room and with the artist in residence from Rosetta Life.
This artist (Catherine Batten) helped Jo to write a poem to express her feelings, which was entered into an international competition and later became central to a video that Jo made with Catherine’s help.
Up until 2007, Jo was being treated with a variety of techniques. She’d had brain surgery – then radiotherapy – then chemotherapy and, finally, a different type of chemotherapy. In January 2007, the oncologist called us to his office to explain that he had nothing left that he could do for Jo – all treatments that were available had been used, yet the tumour continued to grow. We knew this was coming, as Jo’s mobility was worsening and her speech was very slurred.
On Valentine’s Day 2007 Jo’s health deteriorated drastically. She lost her speech, and most of her movement. Having made it very clear that she did not want to die in hospital, I took sick leave to care for her at home.
Jo was now ‘locked in’ – unable to communicate with us. There was very little speech (often, ‘No’ would mean ‘Yes’ and vice versa) and she was only really able to use her left hand. When talking to one of her close friends during the years before this, she had described her greatest fear in life – and this was it. Alive, but not living.
As the months moved on, we created a new pattern for our days. District nurses, GPs, community nurses from the hospice, Marie Curie nurses from 10pm to 7am, etc. I had 30 minutes each morning and each afternoon to take Harvey to school and collect him – and that was about it for my contact with the outside world.
In order to express how I was feeling, in order to stop the constant phonecalls asking ‘How’s Jo?’, I started a blog. My chance to scream at the world that ‘It just isn’t fair!’.
The blog is still there, but I don’t update it anymore. One day, when I get round to it, I will archive it all and delete it. But for now – the story really starts about here: http://chrisandjo.spaces.live.com/blog/cns!9B97567B13093FCC!183.entry
Warning – I am very truthful throughout the blog as time goes on – and it gets a bit hairy at times. I don’t apologise for this, it’s how I am.
The main bright points during the few months that we lived like this included the fact that she always knew when Harvey was there. Her arm would always reach out to hold him, and she would kiss him. A speech therapist proved to me that Jo wasn’t ‘there’ anymore – but Jo knew when her boy was around.
For about a year before Jo ‘disappeared’ into her own head, she and Harvey had worked with the child bereavement worker from the hospice. This meant that Harvey was very aware of how ill Jo was, what she could and couldn’t do, and what the doctors were doing – but all in terms that he would understand.
The child bereavement worker was funded by Children in Need – and we agreed to do a piece for the BBC about her work. I was given permission to load it onto YouTube – another little bit of our digital archive:
Just before she lost her speech, Jo had convinced two of her friends to do a sponsored walk in her name for the hospice – the Jo-Rassic Challenge (Jo-Rassic as they walked along the Jurassic Coast in Dorset). They walked 50 miles in two days and raised over £11,000.
Jo died, in my arms, on 6 June 2007. Three days after the walk and four years to the day since her diagnosis: http://chrisandjo.spaces.live.com/blog/cns!9B97567B13093FCC!391.entry
For the next few months I felt empty. I felt guilty. I felt relief. I felt guilty again. I couldn’t see a future. Like most men, my wife had organised my life – we’d done everything, decided everything, together.
The web remained a source for my grief to be expressed - on the blog and then on a messageboard and chatroom for members of the WAY Foundation (Widowed and Young): http://wayfoundation.org.uk/
Through this organisation, I started to make new friends that ‘got’ instantly what it was like to be a young widow/er – because they all were too. Each night, as soon as Harvey was in bed, I was a prisoner in my own home. But, with the web, I could meet and talk to other people about the worries, fears, stresses that I was experiencing – and learn that I wasn’t alone. That there were a lot of people just like me.
The instant chat on the site, and the messageboard, helped me to form new relationships – and give me the strength to just keep going. A lot of these friends were already using Messenger and Facebook, so drifted onto there too. One lady even started a blog after reading mine – as a way of expressing herself.
She has become incredibly special to me – as we shared a very similar story and very similar backgrounds. We have become more than friends and spend as much time with each other as we are able. I’m not going to pretend that it’s easy – it won’t be until we can live closer and we’ve both managed to kick our kids out (sorry, I obviously mean ‘made sure they are happy and secure away from the family home’) – but it is a great deal of fun and I love her very deeply. We have been ‘in a relationship’ on Facebook (lol) since February 2008 and it is thanks to the confidence that she has given me that I managed to make a very big move, to change my job in October 2008.
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I returned to work at the council in October 2007. Harvey and I became used to a new life that included a cleaner and a childminder and my terrible cooking. But I was just filling time with work and taking the money – not engaging with it; not interested anymore.
Apart from Harvey and my new lady, I was drifting.
Exactly a year to the day following Jo’s death, I spotted an advert looking for a web manager for the hospice that had helped us so much. I am not a great believer in fate, but I think that it was meant to be.
I applied, was successful and started with Weldmar Hospicecare Trust in October 2008. I know that I made the right move. Doing a job that I enjoy, or an organisation that I have a great deal of respect for.
I don’t make grand plans – I have no idea what’s going to happen in the future. I think life experiences have shown me that I need to keep living for the now. And right now, I am very happy.
Footnote: I also get a great deal of help from friends, who volunteer every school holiday to look after Harvey for me. I wouldn’t be able to go to work without their help. They have become part of our family.
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