So the recent outpouring of (very welcome) support in response to the news that my current treatment is working made me think about the language of cancer. In total the post got 164 likes and over 70 comments. Whilst the news was good I think many people misunderstood it, because I used the word remission.
The language of cancer is very familiar but until you are a patient, you don’t fully understand the meaning. There has been a lot of debate recently around how unhelpful language can be. You’ve heard it said many times that “she fought to the end” or “he lost his fight”. None of this is helpful as it implies that the patient had a choice and simply didn’t try hard enough to beat the disease. This is both depressing and offensive to those of us who experience the role of patient as essentially passive. There is very little I can do to change or improve my current situation, I simply have to learn to be. Recent preventative cancer campaigns such as CRUK’s obesity and cancer campaign add to the problem implying that our cancer may be our fault and fueling the blame culture. Whilst lifestyle choices undoubtedly increase risk, fear doesn’t work as a mechanism to prevent behaviour. If it did the tobacco industry would have folded long ago.
So back to the original reason for this blog post, the word “remission”. We hear words and presume that we know their full meaning but often the reality is much more nuanced. When I posted that I was back in remission I think some people took this to mean that I no longer had cancer. This is not the case – it simply means that the tumours in my liver are not currently actively progressing and are responding to treatment and shrinking. I have been told that I will never have a cancer-free scan and despite my recent good news average survival rates for secondary breast cancer are still 3-5 years. To put this in context, whilst my news was good (probably as good as I could have hoped for) it wasn’t the miracle that meant I was cured. This quote helps illustrate further:
Understanding the Difference Between Cure and Remission
Cure means that there are no traces of your cancer after treatment and the cancer will never come back. Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.
In my case is would probably have been more accurate to say “partial remission” as to many the word seems to imply that tumours can not be detected which will never be true in my case. As my friend Rowena pointed out today there is also the social media effect where we see loads of positive responses to a friend’s news and simply click like and move on without thinking about it more deeply. I’ve been guilty of this countless times and I’m sure I will be again.
In summary, my cancer is currently under control. I’m on a chemotherapy tablet called capecitabine which I take twice daily. I have 3 weekly blood tests to monitor my progress and will have a scan in July. The side effects are largely tolerable and I can stay on it for as long as it continues to work which could be 2 months or 2 years. After that, who knows?
In more frivolous news, 3 of the “12 things for 2018” challenge have now taken place. So far I’ve had a fantastic night out at Burlesque with my lovely cycling club friends; completed Bramhall Parkrun with Karen, Carmel and Zoe and enjoyed very posh cocktails at the Washhouse in town and today, I volunteered at Lifeshare with Rowena and served up around 100 breakfasts to the city’s rough sleepers. Next up it’s clay pigeon shooting where I suspect the 12 year-old in our party will be better than me!