Since he was diagnosed in 2014, Mr Gaffney has known that his chance of dying within five years is about 50 per cent. “The Velcade does give me some hope that I will live a bit longer and meet some grandchildren some day. At the same time reality sinks in: rust never sleeps and cancer is a relentless disease, it never gives up,” he said. There is no cure for myeloma. The best Mr Gaffney can hope for is that his cancer will continue to be a "low grumbling disease" (as his doctor described it) instead of an aggressive one. When his doctors applied in November to get approval to administer more Velcade, the application was rejected. Medicare said he may be eligible for retreatment if "if disease progression occurs" – in other words, if the cancer gets worse. To Mr Gaffney, this rule appears cruel: "Being denied access to the only drug that has had a beneficial effect on myeloma, without side effects, while being asked to wait while 'disease progession occurs' to requalify for treatment is, in my view, both unethical and inhumane."

Another request last month to the Pharmaceutical Benefits Scheme Advisory Committee (PBAC) also failed. The PBAC secretary, John Paul, sympathised with Mr Gaffney's plight and his trouble getting continuing access to the affordable treatment. Daniel Gaffney having an MRI at Chris O'Brien Lifehouse cancer hospital. Credit:Wolter Peeters Dr Paul wrote that there were no exceptions for individual patients even "where the medicine might be beneficial or recommended on clinical grounds". He said PBAC was also required to consider the cost and effectiveness of a medicine. Mr Gaffney's 11 cycles – equivalent to 44 injections at $1599 each – were covered by Medicare, costing the Commonwealth more than $70,400 in total. In the 2016-17 financial year, PBS cost $12.1 billion. Myeloma is a difficult disease, which a specialist said "behaves differently in different people. In some it is aggressive, and in others, it is a slow progressing, low grade disease."

Richard Vines, the chief executive of Rare Cancers Australia, said the pharmaceutical benefit scheme was very inflexible. "We often have circumstances for whatever reason, such as rarity, which fit outside the box, and there really is no right of appeal against the PBS," he said. With rare cancers like multiple myeloma there often were different circumstances and responses at different points of time. "We should really be guided by the patient's clinician," said Mr Vines. Mr Gaffney is proving how differently myeloma reacts. About 20 per cent of patients on Velcade don't respond at all. Many get very ill from the side effects of the toxic drug, while the others have their cancer improve so much that it is considered to be in remission. Just before the Velcade was terminated, Mr Gaffney's cancer had improved about 70 per cent, according to a marker called the serum free lambda light chains. During treatment, this marker dropped to 331 compared with a high of more than 2500, showing his myeloma was very active, when the cancer was first diagnosed.

In the nearly three months since he stopped his treatment, this marker has spiked and pain has returned. Two other chemotherapy drugs failed to halt the progression of his myeloma. A stem cell transplant in mid 2015 achieved partial remission. "I now have chronic pain in my spine and my ribs," said Mr Gaffney. It is difficult to sleep, and he often lies awake at nights thinking about the future, his children and how long he has to live. After being taken off Velcade, he took three months off work to prepare himself for the symptoms that were likely to return. His family and friends were shocked to hear that his treatment had been terminated. "I have no fear of dying, but I am not done yet," said Mr Gaffney, who lives in the Blue Mountains. He describes cancer as a gift that has focused him on what's important about life.