In this interview Jo gives us a fascinating glimpse into her work as a thoracic nurse specialist at Barts Hospital. This varied role sees her supporting people with mesothelioma who’ve been referred for surgery from London and surrounding areas. She also works with the oncology team to help patients who are having chemotherapy and immunotherapy.
What drives you?
“Being a nurse is something I grew into wanting to do. Two close family members had treatment for cancer when I was a child. It was all a bit overwhelming, and I didn’t really understand what was going on. I remember gaining comfort from the fact the nurses seemed so capable and knowledgeable. I’ve carried this memory with me, and always strive to help people with mesothelioma feel less alone and better prepared to approach the next steps in their journey.”
What do you do?
“My days are varied. One day I might be attending a surgical or oncology clinic, another might involve a multi-disciplinary team meeting (MDT), and another may see me manning the Mesothelioma UK support line. But what binds all these activities is the bread and butter of a specialist nurse role – the conversations and contacts with patients.”
“…the bread and butter of a specialist nurse role is the conversations and contacts with patients.”
“Conversations often start with a seemingly straightforward call to check a scan or appointment date, or me calling to check on how someone is getting along in recovery from surgery. Before we know it, we are having a much bigger conversation about living with this diagnosis and planning for a future that has just been re-defined.
“Alongside practical advice and problem solving these conversations often encompass personal memories and recollections as well as plans for special events with friends and family. This can have me taking notes of favourite recipes, recommendations of places to visit, music to listen to and books to read. The lady and her friends who danced for Bowie on his doorstep is one of the many stories that will stay with me!”
“The lady and her friends who danced for Bowie on his doorstep is one of the many stories that will stay with me!”
Amongst these very human, personal contacts I am also the go-to ‘Meso Jo’ resource for colleagues across my own Trust and the wider area; this may be for advice about available trials, MDT referrals, follow up guidance or to share updates around mutual patients. Before the pandemic I was able to present at education events organised by NHS peers and industrial disease legal firms; these were valuable opportunities to get out there and keep spreading the word about the ongoing availability of surgery, and current systemic treatments in mesothelioma and I look forward to their return!
“I know I can’t change the diagnosis, instead I hope to enable people to feel differently about it.”
What is the role of radical surgery in mesothelioma?
“The term radical surgery is used when the surgeon aims to remove all the visible cancer. This is always intended to be alongside ‘systemic’ or drug treatments for what the eye cannot see. The procedure is not new; it has been carried out around the world for about 50 years, but research is always being undertaken to improve outcomes.”
“…not everyone is aware of what surgery is, and just as importantly, what it is not.”
“We are currently awaiting results of the MARS2 study. This study looked at whether chemotherapy alone or chemotherapy and surgery is better for people who have mesothelioma of the chest. Patients on this study are now in their follow up period. It is hoped that once analysed, results will help to inform the potential benefits of surgery for people with this diagnosis.
“The wait for these results, coupled with the fact that radical surgery is available in just a few centres around the UK, means that not everyone is aware of what surgery is, and just as importantly, what it is not. There can be a lot of misconceptions surrounding surgery. For example, it is no longer standard practice to remove the lung, which many people are not aware of. All in all, this means that there can be a tendency for chemotherapy alone to be asked for and/or offered rather than the opportunity to talk to a specialist centre about surgery.
“This is where myself, my specialist surgical colleagues and the Mesothelioma UK team come into our own. Each of us plays a part in educating and guiding medical and surgical colleagues at national and local level, to promote the availability and role of radical surgery for our patients. If you are reading this as a healthcare professional or because you know someone with mesothelioma and you want to find out how to get opinion if surgery may be suitable, please make contact with the Mesothelioma UK support line, or your Mesothelioma UK CNS and they will be able to point you in the right direction.”