Tag: Public Engagement

Guest Blog 8

By John Dabell

@John_Dabell

January 2025

England

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When you are told you have cancer then you probably don’t feel much like fighting. The initial shock and awe can incapacitate your whole being. Your senses simply shut down. 

I was completely overwhelmed after I had been told I had incurable Stage IV head and neck cancer and probably had just two months to live. I couldn’t accept what was happening to me and felt numb to the core, desperately vulnerable and utterly pulverised.

I had already had a Stage IV head and neck cancer ten years before and I thought I was out of the woods. I’d been through hell then losing my tongue in a 15-hour operation followed by 35 rounds of radiotherapy and chemotherapy. They threw the kitchen sink at me and I survived but the collateral damage was life-changing: speaking, eating and swallowing were now major daily challenges and my jaw irreversibly damaged because of osteoradionecrosis.  

But this time, I was told a different cancer had grown in my neck and it was incurable. Shock and awe quickly moved to shock and denial and then to shock and anger.   

The first time I was told I had cancer I was the classic passive patient and just let the medical team get on with it. I turned up for appointments, I did as I was told and just towed the line. What else could I do? 

Well, the second time around, I realised there was plenty I could have done differently. I could have asked more questions, I could have asked for a second or third opinion, I could have researched and been more pro-active. My experience up to this point was deferential, asymmetrical and unbalanced.

I’ve learned the hard way that as a cancer patient, you have to make a nuisance of yourself (in a good way that is!) to get heard and get noticed. On occasions, you have to be a persistent thorn in the side of a system that often doesn’t serve the best interests of patients. That might not come naturally to you but this is your life and if the system is letting you down in any way, you have every right to kick up a fuss. If your CT scan hasn’t been reported on for 3 months then you make what waves you can to get heard (and yes, this has happened to me!).

I’m not advocating painting placards and starting a riot on an oncology ward with fellow patients but I am championing being a self-advocate.

You have to be your own cancer champion and for that you have to be a polymath patient and be willing to go beyond the traditional patient expectations and the paternalistic model of the doctor-patient relationship.

You are not a passive recipient of healthcare, you are an active and equal partner in addressing your health and wellbeing. This means being active in the treatment of your illness and the recovery of your health. It’s about being a co-catalyst in your disease management.

Of course, you don’t have to fight your own corner because you may be fortunate enough to have others on your side willing to provide the back-up. Close family and friends are the natural foot soldiers here.

But not everyone has this option and even if you do, the pressure on your nearest and dearest can be heavy and exhausting. It is incredibly hard for them to shoulder the responsibility.  

Other options are available such as a specialist cancer nurse and some patients even have a cancer doula to provide the sharp elbows when needed.

Clearly, you can’t go it alone all of the time, everyone needs a ‘wingman’ and everyone deserves a cancer champion but don’t be afraid to stand up for yourself and be your own support. A considerable chunk of the cancer experience is DIY.    

Self-advocating as a cancer patient is the active process during which you recognise your worth and assume the responsibility of clearly communicating your needs, expectations and goals to others. How far you go is up to you and at the end of the day, it is a choice – you can be an advocate with an ‘uppercase A’ or a ‘lowercase a’ or let others do the advocating for you.

But don’t be afraid to ask ‘awkward’ questions. Your life is on the line, not the person sitting opposite you. Probe, discuss, negotiate and challenge. It is empowering and will feed your determination to live and help you take charge of your own health and wellbeing. We can make better decisions when we are well-informed.

Try not to be intimidated by the expertise of your doctors – they don’t know everything. They also hold speciality biases and epistemic injustice in oncology is not uncommon. 

So, when it comes to a cancer consultation, find a new question that has never been asked before. Challenge the status quo and get everyone thinking outside the box. Your doctor’s recommendation might not be best for you.

Where you have surgery and who does it matters so ask whether you will be treated in a high volume hospital by a high volume surgeon. When it comes to treatment, ask what the current treatment guidelines recommend for patients with your stage of cancer and who checks.   

This sounds confrontational and sometimes it is because it has to be to get heard but for the most part self-advocating is a way of promoting mutual participation and equal power.  You can help to foster further discussions and new approaches by being a good nuisance!

To stay alive and thrive, you do what it takes so you become creative, you get busy and start to research, cover new ground and uncover new thinking. Through self-advocating, you speak up for yourself, your interests and anything else that is important to you and this can lead to patient-driven quality improvement different across systems.

Always remember that you are a champion and it your voice and experience matters. You can be a change agent not only for yourself but many other cancer patients. Time to pull the lever, know your worth and stand up for you because it is all part and parcel of good cancer citizenship.