Blog Post: Are We Neglecting A Fundamental?
Text by Rian Harvey
The phrase ‘you will think about it after’ is thrown about in the world of cancer frequently, and often without much explanation. Moreso, perhaps the lack of that explanation is a sign of a fundamental we are neglecting within the realms of research and development for those with cancer. I find the phrase: ‘researching to help those with cancer’ outdated. Would it not be better suited to label the research: ‘Investigating to improve the outcome and lives for those during and after a lived experience with cancer.’
It comes as no surprise to proclaim that we all remain cancer patients in one sense or another after hearing those fateful words for the first time. However, I find myself questioning the availability and active focus of research for developing better aftercare of patients as they enter the world of living beyond a diagnosis.
Further to this, it is no secret that we have seen exponential growth in the discovery and development of better treatments for Acute Leukemias (amongst other cancers too). As we fly high on a path that is leading us closer to more positive outcomes, have we neglected something? Are we forgetting, more so, leaving behind, a fundamental to cancer care?
Often during my talks and discussions at both large-scale events and online forums a topic arises time and time again. The topic of what life can be like for a human being after being diagnosed with cancer. How that looks, what support there is, and more recently how it was explained to me and others before we entered it.
In some case’s we can count ourselves lucky to receive guidance on some of these topics, from questions of fertility to understanding how to approach employment or reintegration to school and education. However, though those are good topics to cover, and are of course important, I feel from a patient’s perspective, perhaps some research and hard evidence can be done into the after effects of chemotherapy on the body? We know that it can have negating effects to us as we go into life after cancer, but do we know the chances of that? Do we have evidence to suggest what may help in life after to better improve the lifestyle of someone with lived experience of cancer. Better supporting us to reintegrate back into our new normal. Could we research the cognitive effects of chemotherapy? Could we investigate the very real reality of so-called chemo-brain? All these unanswered questions beg the ask, could we be doing more?
In a recent private survey I conducted, I asked a number of members of the cancer community if they felt that more research could be done into the development of knowledge around life after cancer, it comes as no surprise to me, and perhaps nor to you either, when the results indicate 100% of those who answered said ‘yes’. Agreeing that we need to look into the aftereffects of cancer and give more peace of mind to those who have been through it to better equipped patients as they enter life after. Research into how to help aid patients with long lasting symptoms, to better help us, as the patients, understand what to expect and how to deal with that when and if it appears.
From a patients perspective I can admit there is nothing more embarrassing than trying to explain an after effect of cancer such as chemo-brain to someone whilst barely understanding it oneself.
In many ways this is a plea to do more, but perhaps it is more so a plea for us to investigate and talk as patients about what happens after?