I’ve been in hospital for the last three weeks, and have just returned back home (finally!). It has been both a very difficult physical experience dealing with pain management and a wound, but also a mental journey for me.
A lot of what I read about palliative care, and my own experiences as well, have been about control; the control that palliation gives you over the time you, as an individual, have left, rather than the often more passive involvement of care when engaging in active treatment. Throughout my treatment, I’ve been eager – possibly to my own mental and emotional detriment – to remain highly active with what has been going on. I make guesses as to what might be causing pain or discomfort or other symptoms, explaining to my doctor what it must mean as he compassionately and respectfully listens to my ideas that I’ve gotten from my half-hearted reading of an abstract from a medical journal. Continue reading →
Driving to work on Saturday morning I listened to RNZ National’s Kim Hill interviewing celebrated Australian novelist Cory Taylor. Cory talked about the experiences that led to her writing her last book, Dying: a Memoir (Text Publishing), while dying of metastatic melanoma with brain metastases. Topics discussed include Euthanasia, Palliative Care, and writing about dying.
You can listen to the RNZ National interview here.
The first time one of my medical professionals touched me for comfort rather than during a physical exam, it was during my liver biopsy. I was extremely frightened of the procedure, due to how painful I’d been warned the procedure was, and I was, and still am, slightly uncomfortable with needles (though daily Clexane shots sure sorts that out fast). The medical team at the imaging clinic I attended had gotten in a second nurse, just to hold my hand during the procedure. It was her 60th birthday, and she had been called in, literally, just to hold my hand. I was incredibly moved by this, and incredibly comforted to have someone gently talk me through what was going on – to warn me to look away when the giant liver biopsy needle was brought out, helping me count holding my breath as the needle drew up the cancerous cells, and gently walking me to the recovery room after the procedure finished. It was one of the kindest things I have experienced with my medical professionals – and I have experienced more kindness than I can even recognise. Continue reading →
If you’re lucky enough to have a break over the summer holiday season, I would advise that you to avoid anything work-related. However, if you just can’t pull yourself away from the worlds of palliative care and research, here (in no particular order) are some related links:
Check out the short films from Little Stars TV, sharing stories of paediatric palliative care.
Need a last-minute gift for an older person? See GeriPal’s list of Gifts for Seniors (although my Dad didn’t seem to appreciate it when I shared it with him!)
A medical conference with rapping and singalongs? I’d love to attend this “creative medical conference“, which explores “the spaces between medicine and humanities and media and technology.” (Dotmed conference via Irish Times)
Some of our readers will be able to relate to this piece on the post-PhD slump. I am slowly working my way through the rest of this excellent blog, Patter, from Professor Pat Thomson.
The Heart Sisters blog (@HeartSisters) is a great read for a patient’s perspective of living with heart disease and navigating the health care system.
Another patient blog I recommend is Living with Bob (Dysautonomia) (@RustyHoe). She writes detailed, thoughtful posts about living with chronic illness. Her descriptions of dysautonomia symptoms are eloquent. I can’t do it justice. Check it out.