I hate it when battle terms are used to describe the experience of being treated for cancer. After going through a mastectomy, chemotherapy, radiotherapy and tamoxifen; the implication is that because I went on to develop metastatic breast cancer, I didn't fight hard enough. I look back at the feelings of guilt I had then and am astonished I ever felt that way. At only 31 years old I pictured constant pain and an early death would quickly follow my diagnosis, because this is what I understood metastatic cancer to be. My oncologist changed my thinking by never giving me reason to believe that I was on a downward spiral of disease progression that couldn't be halted for a good amount of time by the treatment options at her disposal. Instead of a life-limiting prognosis, I was given gentle encouragement as we began down the treatment path I have now been walking for six and a half years. By avoiding the bleak statistics and that loaded word 'terminal', she helped me learn that I was living with cancer, not dying from it. For that I am grateful.
The irony is that the 'survival of the fittest' battle analogy does have a place when you're living with cancer, but it isn't about the 'war' on those rogue cells taking up strategic positions in your body. Stage IV cancer patients like me have a fight on our hands because the process of making sure that we get every chance at survival is becoming an increasingly fraught one. And it's a battle that the most vulnerable are losing.
This week, the Cancer Drugs Fund (CDF) will begin de-listing sixteen treatments that were previously available on the NHS; drugs that could have benefitted thousands of patients with advance cancers who will now miss out. And a few days ago, Macmillan Cancer Support published a report underlining that more needs to be done to provide social care for patients who are having outpatient treatment and don't have enough support in place to manage their day to day needs.
Ahead of May's general election, both Labour and the Conservatives have committed to improving cancer survival with the promise that the CDF will continue until 2016. Shadow health secretary Andy Burnham also delivered the news that, under Labour, the fund would increase from £280 million to £330 million and widen its scope to include potentially life-saving surgical and radiotherapy options that are not currently being offered to all patients who would benefit from them. As a breast cancer patient, it is also heartening to hear that Breakthrough Breast Cancer alongside a number of cancer charities, have been brought together as a working group by NHS England to help develop a better process through which patients can access the drugs that they need, now and in the future. While welcome news, these measures do not go far enough to fix our current problems.
Macmillan estimates that by 2020, one in two of us will have experienced a cancer diagnosis. How many of those then go on to develop metastatic disease is an unknown quantity, and that is at the root of the problems so many of us now face. In order to make cancer survival rates a priority, it is imperative that more attention is given to the needs of patients living with the incurable form of the disease. And this isn't just a fight for innovative life-extending treatments to be made available on the NHS, although that is the most important part of the battle. The fact is that we are living longer than before with cancer, but the management of our treatment is often not compatible with living well, and that is preventing the progress we so desperately need. As Oliver Sacks eloquently wrote after learning his melanoma had spread and was incurable; 'I have to live in the richest, deepest most productive way I can'. What wonderful things could be achieved if all stage IV cancer patients felt enabled to make this a reality? But in order to even hope it might be possible, we need to spend less time in the waiting room as clinics overrun; less time waiting for scan results and living in a constant state of anxiety; less time agonising over whether that promising new drug will be funded by the CDF when our current treatment fails. Just because we are incurable, this psychologically draining status quo does not have to be inevitable, in the same way that the vision of constant pain and early death looming large over my future six and a half years ago didn't become an immediate reality. For us to have a chance to continue to make a vibrant contribution to the society in which we live, it must be made easier for cancer to take a back seat in our lives. And the first step on that path is to think about treatment for stage IV cancer as not simply 'end of life' care.
Whichever party is elected in May, I urge them to focus on doing more to enable those of us living with incurable cancer to have a better experience. That has to start with looking at a more joined up NHS and welfare system that puts the best interests of the patient first.