As Janet Donnelly looks forward to Christmas Day, she knows lots of people who have just one wish – more time with those they love.
Janet, 48, lost her sister, Jane Kelly, to breast cancer three years ago.
As a humanist celebrant she spends a lot of time working with those who have just lost a loved one, and even with those who know they are dying.
She says she understands when these people tell her the one thing they wish for is more quality time with those who mean most to them.
Janet, whose sister died just two years after her shock cancer diagnosis, says the value of those last months she had with her sister can never be calculated in terms of money.
Which is why she admits she is deeply sad that the Scottish Medicines Consortium have recently rejected two drugs that could extend the life of those like her sister who had secondary breast cancer.
The two drugs – Afinitor and Perjeta – were ruled not to be ‘cost effective’ despite being able to extend the life of those with breast cancer for up to six months.
And it is also why Janet, a supporter of Breakthrough Breast Cancer, is welcoming a Scottish Government review into the medicines system in Scotland.
Janet, of, Aberlour, Moray, said: “When I’m not working as a celebrant I work within the NHS and I know making decisions about the financial cost of medicines is not easy.
“But more importance has to be placed on the value of life, not just the cost of a particular drug.
“Drugs that can prolong life give the gift of time, and that time is precious.
“I know from my own personal experience, and from meeting others through my role as a celebrant, that the value of those extra months can’t be calculated on a spreadsheet by people who are paid to crunch numbers and come up with a bottom line.”
Janet’s sister was diagnosed with breast cancer shortly before Christmas 2008, after finding a lump in her breast.
She underwent surgery, chemotherapy and radiotherapy, and initially everyone thought she had beaten the disease.
But she fell ill in early summer 2010 and further tests revealed the breast cancer had spread throughout her body.
She died, aged 51, in October 2010, just days before the birth of her second grandson.
Janet said: “When Jane was first diagnosed with breast cancer we were all totally shocked, but she seemed to respond well to the treatment she received and we thought things were looking good.
“Then in 2010 she suffered what doctors believed may have been a little stroke.
“She went into hospital for tests, which showed she had a tumour in her brain.
“Further tests showed that she had metastatic, or secondary, breast cancer that had also spread to other parts of her body.
“We knew by the summer of 2010 that she was not going to get any better, and that we just had to make the most of the precious time we had left with her.”
Janet says the family booked a holiday to the Centre Parks resort in Sherwood Forest, near Nottingham, where Jane spent a week relaxing with her husband, Dave, the couple’s two sons, Peter and Chris, her heavily pregnant daughter-in-law, Nicola, and her grandson Thomas, who was aged just 2.
Janet, her husband, Roy, and their dad, Norman, also went on the trip.
Just two weeks after the holiday, Jane died at a hospice near her home in Stockport, England.
Her second grandson, Sam, was born two days before her funeral.
Janet said: “Jane’s death was very sudden, and even though we knew she was terminally ill we never expected to lose her as quickly as we did.”
She added: “If Jane had been given any extra time, it would have given her an opportunity to meet her newest grandson, Sam, who was born a few days after she died, and we would have had the joy of seeing her hold him at least once.
“Extra time would have meant that Thomas – who was only two when she died – would have had some memories of his own of his Nana Kelly rather than just seeing photos of her.”
In the wake of her sister’s death, Janet walked the 268 mile long Pennine Way, to raise money for Breakthrough Breast Cancer.
The charity funds 25% of breast cancer research in the UK and has a team of more than 270 scientist working across Britain, dedicated to finding new treatments for and discovering the causes of breast cancer.
Breakthrough Breast Cancer is currently part of a review group set up by the Scottish Government to make recommendations on how the medicines approval system can be improved so more life-prolonging medicines are accepted rather than rejected.
Director for Scotland at Breakthrough Breast Cancer, James Jopling, said: “At Breakthrough we have a big focus on secondary breast cancer.
“This is the breast cancer that spreads to other parts of the body, and it is the breast cancer that women die from.
“In the past few months we have seen two valuable secondary breast cancer drugs rejected for routine use on the NHS by the Scottish Medicines Consortium.
“This was a devastating blow for women who could have had an extra six months with their friends and family.
“Due to these rejections, and other rejections for drugs to treat other conditions, the Scottish Government announced a review of the access to medicines system in Scotland.
“We hope the review will make changes to the system allowing future drugs like Afinitor and Perjeta to be made available for patients in Scotland with secondary breast cancer.”
He added: “We want the system to place more importance value of life as opposed to cost of a medicine.”
For more details on Breakthrough Breast Cancer visit www.breakthrough.org.uk