I’m going to die of cancer but I’ve given it a bruising along the way
THE day of January 28, 2014, was a foggy, cold, grey day. The telephone call came a little after lunch, from the manager of the surgical department of the Health Board.
“The doctor is ready to meet you at four o’ clock this afternoon Irfon, he wants to give you the diagnosis.”
I knew that she was aware of the diagnosis and so I asked her to give it me outright. She wasn’t prepared to speak over the phone so up we went, my wife Becky and I, to her office at Ysbyty Gwynedd.
It was quite a blurry experience walking into that office, seeing two or three people I knew on the way. I suspect they were aware of what I was about to hear. There were no niceties or long discussions, it was straight down to business.
“Irfon, you have advanced bowel cancer and metastases in the liver.”
That is how I open my book. A book that chronicles my journey with cancer over the past three and a half years. I want to document my experiences as I feel it is very important to have a record that people can look back on. My wife, Becky, has lived through this with me, as have my five children, Lois 22, Owen 19, Beca 16, Siôn Arwyn, seven, and Ianto Huw, six.
Many of you will be familiar with my story as there has been much media attention and it has become very public. Initially the focus was on the charity work we have done with #teamirfon for the North Wales Heath Board charity, Awyr Las, which is still going strong. In fact, the donations recently hit £150,000, substantially more than the initial target of £20,000!
By September 2014, having been treated with chemotherapy, radiotherapy and liver surgery, the cancer returned to my liver and was deemed inoperable. I commenced second line chemotherapy with little effect.
Second opinions from specialists at the Hammersmith Hospital in London and the Christie in Manchester pointed towards a drug, Cetuximab, predicted to provide a 15% chance of full recovery and at the very least double my life expectancy. I was ready to accept that over the hopeless predictions given in Wales.
As a family, we were naïve, and we were alarmed to find that the drug was not available to me in my home country.
We embarked on a journey that was to prove extremely stressful, confusing and distressing.
The IPFR (Individual Patient Funding Request) policy, set by the Welsh Government, is the process clinicians trigger on behalf of patients to access funding for specialist treatments not readily available within the NHS budget. The request was initially declined on Christmas Eve 2014. Two further appeals were also declined, due mainly to cost and an inability to demonstrate ‘exceptionality’ in my case, despite recommendations from three leading Colorectal Cancer specialists in England.
So I moved to England on a temporary basis and was able to access the treatment via the Cancer Drugs Fund (CDF) at the Christie Hospital in Manchester. It was a strain on me as an individual and on my family.
Nevertheless, it was a stress worth enduring as I responded remarkably to the drug, resulting in an overall shrinkage of 60% of my tumours, allowing the Hepatobiliary surgeon at Aintree Hospital, Liverpool, to carry out further surgery to my liver as well as bowel surgery to remove the colorectal tumour.
A campaign, #HawliFyw (Fighting Chance) was set up to raise awareness and called for cross political party support regarding what was a postcode lottery in relation to access to certain cancer treatments in Wales and the UK.
Within weeks we had gathered 24,000 supporters on social media and hundreds of messages poured in with plenty of examples of people all over Wales caught in a similar dilemma and frustrated by the policy.
Support came flooding in from all over Wales, the UK and worldwide, celebrities offered their support, the #HawliFyw flag was even planted in the North Pole. Media attention grew and grew.
In 2015 ITV Cymru Wales produced two documentaries, Y Byd ar Bedwar and Wales this Week which aired just before my surgery in September 2015. I felt strongly about filming the programmes as I felt the coverage would contribute significantly to the campaign.
That summer, Becky and I met with the First Minister, Carwyn Jones, and he listened to our story and promised to take it back to his team in Cardiff before providing us with feedback later in the year.
In January 2016, it was announced that Cetuximab would be made available in Wales as a first line treatment for certain patients with bowel cancer. I was delighted, and so proud that the campaign had influenced the decision.
However, there was more work to be done and we continued campaigning for a review of the IPFR process so that it would become fairer, transparent and clearer for individuals and families.
In September 2016, I felt privileged to be invited by Vaughan Gething, the Health Minister, to sit on an independent panel to review the IPFR process.
Much of my input was via telephone conversation and email from my hospital bed in Aintree and Bangor.
I was grateful to the Chair for the involvement and was made to feel that my input was valuable and contributed to the outcome of the review.
Some 27 recommendations were made and in March this year Vaughan Gething announced in the Senedd that all recommendations were to be implemented and should be operational in all Health Boards across Wales by September 2017.
#HawliFyw had called for cross party support and this had been achieved. It’s not often you hear of a campaign having such an influence on Government policy. I’m proud of what we’ve achieved and take comfort in the fact that people in Wales living with cancer will benefit from the outcome.
My situation has changed