My name is Juliet Bouverie. I'm Director of Services and Influencing at Macmillan Cancer Support. But, much more importantly, I'm the long-term girlfriend of John Butterfield who had a brain tumour and died of cancer five years ago.
This is the first time that I have shared my story in any depth. I feel apprehensive. I've just re-read parts of his memory book, including the eulogy written by John's best friend Kit and the letter I wrote for John which went in his coffin. It's 8am on a Monday morning and I'm in floods of tears. Probably not a great way to start the week!
John and I met at university and were together for over 20 years. He was diagnosed with an advanced brain tumour, a neuroblastoma, in 2005. He had a senior full-time job in news at the time. I came home from work one evening and John had blood streaming down his forehead from a cut. He was looking confused. Moments later, he was in a full-body seizure. Two hours, numerous seizures and several scans later, our world was turned upside down. John had an inoperable brain tumour the size of a satsuma in his left frontal lobe and there was nothing anyone could do to cure him.
John coped admirably. He was never one to feel sorry for himself. He just got on with life despite his cancer. We had some wonderful times together. We had a two-week holiday in Tibet. It was maybe not the most sensible thing to do to travel uninsured to the highest country in the world, but this was somewhere John had always wanted to go and it felt important to do what mattered to him. We went to Antigua shortly before John died. We had so many happy times with family and friends, so many laughs, so much fun, so much love.
But so many tears too. We tried for children but were unsuccessful. John stopped being able to work - the pressure and fast pace of television was too much for him - and the local Oxfam bookshop didn't understand how much volunteering would have mattered to him. John regularly fell over as his tumour seriously affected his mobility, yet the community NHS physiotherapy service was at best intermittent. When he broke his collar bone, the fracture clinic at St Mary's Paddington refused to see him when he got confused about the appointment time and turned up a day early - they didn't even know he had a brain tumour, even though University College London Hospital (UCLH), John's 'official' hospital, was only three miles away.
We experienced the best and the worst of the NHS. The best in that whenever John was admitted to hospital or received treatment as an outpatient, the professionals who looked after him were caring, professional and expert. Six weeks after our Antigua holiday and 4.5 years after his diagnosis, John ended up having an unexpected brain haemorrhage. We were struggling to get him surgery to remove excess fluid from his brain and he died 36 hours later in intensive care in Frenchay Hospital in Bristol. The staff were wonderful. So unbelievably caring and sensitive. Even going as far as sending me several hand-written cards of condolence up to 18 months after John died.
We did however also experience the worst of the NHS. The worst in that, whenever John was out of hospital, the care disappeared completely and we were on our own. Our GP was hopeless. He really didn't seem to see John as his responsibility and didn't understand the emotional and practical needs that John had. The worst in that neither the surgery department nor the oncology department at the hospital took ownership of John's treatment and I was often stuck in the middle trying to arrange or rearrange appointments. The worst in that the UCLH surgery department phoned to confirm a surgery date for John four weeks after he'd died. The record of his death had not been passed from Bristol to London.
Ten years later, what are my reflections on my experience as a carer? First, I never saw myself as a carer. The word 'carer' implies forced responsibilities. I was simply and overwhelmingly John's girlfriend who only wanted the best for him. We had wonderful times together - cancer isn't all bad - and his illness only made us appreciate each other even more.
Second, I was ignored by the GP and often not taken seriously by the hospital staff. I remember John having unexpected regular seizures one night, phoning the out-of-hours number at the National Hospital for Neurology and Neurosurgery at 3am, being told not to worry and simply go to A&E the next day, then ending up in intensive care because John had a very serious condition called 'status epilepticus', a life threatening seizure or series of seizures. To be fair, the doctor in charge did come and personally apologise to him but I did say that he should have taken my perspective as a carer more seriously. I was a lay person, but I knew more about John's cancer and its effects on his life than most people.
Finally, I was certainly not equipped or supported to deal with the practical and emotional strain that John's illness placed on me. Despite wonderful support from family and friends, I sometimes felt alone and isolated. I still do. Bereavement is a terrible thing. You end up being and feeling half the person that you were - unconfident, unsettled, unsure. Learning to live on your own is a whole new life skill that I'm still trying - it feels somewhat unsuccessfully - to master. And starting new relationships is even more complicated - I've only met one person I really like in the last five years and I'm not sure he feels the same way about me as I do for him.
There have been two wonderful constants through all of this. My family and friends who have stood by me every step of the way and still do. And Macmillan. Macmillan is a very special charity that cares as much for carers and family members as for the person with cancer. You can phone our telephone support line on 0808 808 00 00, read our fantastic carers booklet on our website, join a carers support group, or join our campaign which is about ensuring the NHS identifies carers and signposts them to available support. We're also looking at what role the charity should play in supporting bereaved carers itself - far too many still don't get the support they need.
I hope that my experience will motivate health care professionals to look out for carers and that it will give carers the strength to carry on. My advice to other carers is to try and live in the moment and not let worries about the future overshadow the present. I want policy makers and the public to recognise that quality of life is just as important as quantity of life and understand that charities like Macmillan Cancer Support are there to play a vital role in improving people's wellbeing as well as physical health.
The new Care Act comes into place this month (April 2015) including new guidance for healthcare professionals on how to support carers. For more information please visit https://www.macmillan.org.uk/GetInvolved/Campaigns/Carers-campaign/The-Care-Crisis.aspxSuggest a correction