Scribbles of a “mad man”

Categories: Care, Featured, Must Read, and Opinion.

The vocabulary in cancer-ville is full of tongue-twisting, jaw-breaking words but it doesn’t take us too long before the use of medical terms becomes part of our everyday language. You’ll be sure to hear words such as “Carcinoma, Haematology, Metastasis & Neuropathy”. 

Don’t get me started on the acronyms; Ooh no, here you’ll find “CA, CBC, FBC, MRI, MRCP, PET” and the list is endless. Given that there are over 200 cancer types, it would be logical to assume that there is 100 times the number of acronyms floating around! When you hear me, or a fellow C-buddy use these words in a chat, please know that I/we are not trying to be all indifferent or to be a “smart Alex”, it’s just an unavoidable part of our lives!

There are also some words that are “heavy” with some serious connotations attached and hearing those words had me breaking out in a cold sweat. One of the scary words I had to face very early in my diagnosis, was that of “Palliative care”.

I remember when I first heard it, the girls thought it was necessary to plan for every eventuality, so we made an appointment at a local hospice, however my uniformed brain made the leap that hospice meant preparation for end-of-life or death, which is kind of the general society misconception, but its only human nature to want to avoid making the connection and possibility.

Prior to meeting the staff at hospice, I had these mental visions of being met by the stern-looking, sullen faced nurses from hospice explaining things from administering injections for pain relief to advising us on the preparation of Last Will and Testaments.

But that’s nowhere near the truth, the reality is that hospice is about life and living well!

I’ve come to understand and believe that this scary word called “Palliative care”, should really be part of discussions we all need to have immediately at the commencement of our treatment.

Very little or nothing is done to prepare for the pain, the nausea and general side-effects that comes from those first few radiation and chemotherapy sessions. At that point my life changed radically, and it not only affected my quality of life but also impacted on the lives of my loved ones.

It’s at the start that we all face the psychological consequences of the diagnosis and those professionals trained in dealing with these “soft issues” would be invaluable to both patient and loved ones or caregiver. I remember this being the topic of discussion at one support group meeting and someone made the comment that surely there must be a better word for Palliative care, that isn’t so intimidating!

But I guess someone, somewhere decided that “Palliative care” is an important part of the cancer terminology, but just got it wrong in leaving it to later in the journey. The trick would be to ensure that our Medical Professionals (Doctors and Nurses), are adequately equipped emotionally on how to deliver such a message to their patients.