Annie, from Wales, was diagnosed with ovarian cancer in 2011. She moved to England in order to access a clinical trial and campaigns for better access to drugs. She supported our Ovarian Cancer Postcode Lottery Campaign and campaigned tirelessly to improve access to drugs. Annie sadly died in 2016. Here's her story in her own words or you can read our tribute to her.
I realised I had ovarian cancer as I was listening to an article on BBC Radio 4 Morning Programme in March 2011. At the time I was waiting for a hysterectomy following a diagnosis of fibroids. Somehow the various clinicians I'd seen had omitted to tell me that I had a much more serious and life-threatening condition than fibroids.
I found there to be a disconnect between the GP’s initial referral for a diagnostic scan and the subsequent referral via a gynaecologist for surgery. No woman should have to find out for herself from the radio that she has advanced ovarian cancer.
I was treated in Wales for two years before learning there was a drug available to some women in Wales and to women in England via the Cancer Drugs Fund (CDF) but that I couldn't have it because I lived in Cardiff. Had I lived in Caerphilly I might have been in with a chance to get it, and had I lived in Swansea I would have received the drug. I realised my health care in Wales was a lottery.
This discovery was one of the worst moments of my life and, to be honest, it was far worse than the news I’d had two years before that I was going to die of ovarian cancer. I remember saying to my oncologist, 'I feel as though a great black hole has opened up under my feet and I'm just plummeting and plummeting into it'. You can put getting cancer down to bad luck. To suffer from a healthcare lottery is unfair and it's not something I was prepared to tolerate.
Feelings of anger and despair
Over a period of weeks I processed feelings of anger and despair. I railed against the unfairness of the system in Wales. I tried to find a way round the problem by asking to go on a clinical trial in London that would give me access to Avastin but my health board refused. I felt trapped.
My husband and I agreed we'd have to move just the other side of the Severn River so I could access the CDF in England and hopefully a range of clinical trials at Bristol Royal Infirmary. Moving house is an upheaval and not something that can be done in a few weeks. I urgently needed to start a second line of chemotherapy. In a panic I rang my daughter in London and asked if I could live with her so I could start treatment whilst we'd sorted out the house.
Those weeks and months were bleak times but I had so much kindness from family and friends. I had a huge amount of support from Target Ovarian Cancer when I enquired about hospitals in England and where trials were available. Knowledge is a great bonus and sadly as patients we are frequently unaware of the options available to us.
Pragmatic, wise and patient-centred advice
I was referred very urgently by my new GP in London to the Royal Marsden. Both put me at ease. Their main concern was whether I would have support in London and whether I felt I would be fit enough to travel back and forth. The advice I received was pragmatic, wise and patient-centred.
In a very short time I settled into my new routine travelling back and forth from Cardiff to London for treatment. Having sorted out my own predicament the anger and resentment lingered. It is not acceptable that there is such a difference in the treatment people can receive, and it's wrong that patients cannot choose where they are treated in Wales. I have spent the last two years campaigning actively in Westminster and Cardiff to highlight the injustice of the system. Not everyone has someone they can call upon to give them an NHS address to access better treatment.
Luckily I live well with cancer. I largely ignore it, and whilst I have breath in my body and surplus energy I shall spend my time campaigning and lobbying for better and fairer treatment for everyone.
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