Young-at-heart Vera Saunderson (72) lives in Carrickfergus. Vera was diagnosed with liver cancer in 2012 and is experiencing first-hand the inequality in accessing life-extending cancer drugs in Northern Ireland.
Vera, a widow with two children and four grandchildren, was faced with the dilemma of continuing to live in her own home or moving to England to get the drug she needed.
In November 2012 Vera (pictured left) took a constant sharp pain in her side. When the pain continued to worsen that evening, she made her way to the Mater hospital in Belfast. Doctors suspected gall bladder problems and she had an ultrasound.
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“The day after my ultrasound I was contacted by my GP and called into his surgery. The fact that they had got back to me so quickly worried me,” recalls Vera.
Her GP said a large tumour had been discovered in her liver. “I was completely shocked. I had no idea that anything was wrong. I’d felt fine until I took the pain in my side, and I certainly wasn’t expecting the problem to be cancer,” says Vera.
At a meeting with her consultant, Vera mentioned that she had been experiencing some bleeding. After further investigation it emerged that she also had a cancerous tumour in her bowel.
During her first operation three quarters of her liver was removed and in a second, a few months later, she had a tumour and a number of lymph nodes removed from her bowel.
Vera was prescribed a course of chemotherapy for her bowel cancer, but when she reacted badly to it, she was quickly taken off it. As she was told radiotherapy was unsuitable to effectively treat her type of cancer, there were no other treatment options available to her.
In March 2014, Vera took an extreme pain in her back. The GP suspected sciatica and ordered an x-ray which showed some crumbling at the base of her spine.
“At the time I put it down to a side effect of old age. But the next month during a follow up meeting with my oncologist I happened to mention the pain in my back and down my right leg. He was immediately concerned and advised an MRI scan followed by a CT scan. The scans revealed the cancer that had eaten right into my vertebrae and into a spinal disc. They also found another tumour in my lung.”
Vera’s oncologist sat her down and explained that her cancer was incurable. He said that there was a drug that could help to extend her life for a number of months, perhaps even longer, but that unfortunately Sorafenib (also known as Nextavar) was not available on the NHS and that she would have to pay for the drug herself in order to get it.
“My oncologist confirmed that the drug was available through the Cancer Drug Fund (CDF) in England, and had I lived there, I would be in a much better position to access it. I replied ‘But aren’t I a UK taxpayer? Do I not also live in the UK?’ I couldn’t understand why people in England can benefit from this drug while Northern Ireland patients are denied it – it’s absolutely ridiculous,” said Vera.
Vera’s daughter lives in England and so she could live with her in order to get the drug, but Vera refuses to entertain the thought.
“Northern Ireland is my home. This is where I should be able to receive my treatment. It might be too late for me but it’s not for the young women with small children that I see time and time again in the cancer wards. I want to help change things for others who live here.”
Vera loves to get out and about but at the moment can only manage a few yards at a time with a walking aid before she needs to sit down. She lives with constant pain and uses morphine tablets to manage it. Sorafenib could help to ease this pain making her more mobile and granting her more precious time with her children and young grandchildren.
“I’ve received tremendous care from our health service from start to finish but this is definitely the weak link in the chain. How can this be allowed?, ” she argues. “It must be extremely frustrating for clinicians to know that there are drugs that might help their patients but know that they aren’t ever likely to get them.
“I am backing the Cancer Focus NI Equal Access campaign and plan to make lots of noise to make sure that our voices are being heard! I’ve already had good meetings with East Antrim MLAs Roy Beggs and Sammy Wilson MP and plan to meet with a few other local representatives to do some more groundwork. I believe that if we all shout loud enough Stormont has no choice but to listen.
“It’s a glaring inequality and one that the people of Northern Ireland will not put up with any longer, so please show your support.”