We had positive scan results just a few days ago. It’s a great time and we are very relieved, but it’s a time when we also think about friends of ours we’ve sadly lost along the way. Friends like Ric who passed in December and Max who died earlier this year. I’m very lucky to receive treatment that works, but not everyone is so fortunate. For some people, the drugs they need are too expensive to be funded. Today I’ve been on Good Morning Britain, a great opportunity to talk about cancer drugs funding. I was excited and slightly daunted to have the chance to speak on behalf of fellow cancer patients.
One of the drugs I receive is called Cetuximab. It’s a very expensive treatment that isn’t, at present, funded by the regular NHS and isn’t NICE approved. We got funding from the Cancer Drugs Fund to pay for my treatment. Now the government is looking to withdraw the CDF and Centuximab is under threat.
It’s an expensive drug, but it’s changed my life. I’ve been receiving it for three years. It’s given me so much life and enabled me to achieve a great deal, like running marathons and raising money, but most importantly it has allowed me to watch my daughters grow. They are 3, 6 and 11. Heidi, my youngest, was not yet 6 months old in February 2013 when I was given 6-12 months to live. She couldn’t speak so couldn’t even tell me she loved me (I had my suspicions she did though). Now she lavishes great affection upon me and not just that, but she’s also about to start primary school in September. I’ve also lived to see my middle daughter Isobel start, and thrive at, primary school. My eldest, Skye, is about to start high school too. Huge milestones that I wouldn’t have reached without Cetuximab.
By the time I started receiving this amazing drug I’d been given two different courses of chemo that had absolutely no effect on my cancer and I was given my terminal prognosis. Cetuximab was probably my last role of the dice, not that my Oncologist (The Indian Uncle I Never Knew I Had) had been so blunt. It took a little while for everything to get sorted. I didn’t have long left, so we got busy using this time to make memories with my girls. We visited Disneyland Paris, took a big family holiday to Cornwall and went on lots of other lovely trips, including my girls’s first trip to the Britannia Stadium to watch the mighty Stoke City.
The Indian Uncle I Never Knew I Had (aka my Oncologist)
It took time to get sorted out because Cetuximab is an expensive, targeted treatment, which only works for patients whose cancer has a particular mutation. Thankfully after testing we discovered mine did and although I was given a 25% chance of the treatment working we went ahead. But we could only do that after we’d secured funding from the Cancer Drugs Fund.
My life and those of my beloved wife and girls would have been much different without Cetuximab and the Cancer Drugs Fund. But sadly, at the moment, it looks like the Cancer Drugs Fund is going to be withdrawn. It’s unclear what is going to replace it and whether funding for expensive cancer drugs will be available. My treatment is secure, because I’m already receiving the drug, but others diagnosed after me might not be so lucky.
Great to meet Good Morning Britain presenter Sean Fletcher today
One of the main reasons the government is looking to withdraw the Cancer Drugs Fund is because there’s been an overspend. More money has been spent on cancer drugs than was allocated. But surely that’s an indication of success? If more people are accessing the Cancer Drugs Fund then were budgeted for than doesn’t that demonstrate how necessary it is? Instead of shutting it down the government should be investing more.
Cheeky rum along the Thames this morning before our interview
They can save money over the long term by working hard to do more to raise awareness of cancer symptoms, so that more people are diagnosed earlier. The earlier a person is diagnosed the less treatment they are likely to need, therefore making it more likely they’ll be cheaper to treat. If the government can do that and we can take personal responsibility for our own health, making use of screen where its available, they won’t need to spend as much money on expensive drugs. But right now they need to fund drugs and raise awareness.
Great fit in some time at the hotel gym too!
Who knows what the government will decide to do, but it doesn’t feel right that drugs, which are proven to give people extra life, might be cut. I’ve had three years of extra life, but it’s not possible to put a price any extra time a drug could give to a terminally ill cancer patient. Even one extra month could mean a person reaches an important milestone, like an anniversary, a graduation, a special birthday or an important family time.
It’s a really important issue and I’m really pleased I’ve been given the chance to speak up for my fellow patients. Our friend Mark Flannagan, the CEO of Beating Bowel Cancer was on the sofa with me and it was really great to share my experiences.
Thank you to everyone who sent us messages of encouragement. I had a restless night’s sleep and your kind words were humbling and a great source of reassurance.
The catch up link is active for the next few days. We are on at roughly the 1hr48 mark: