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.
But as I’ve started mentally shifting towards a less active treatment regimen, I also realise I personally need to be taking a less active role in this guesswork and research. It is a huge paradigm shift, and a different way of viewing care, in which which I do remain in control, with options in place, but also allows me to choose the option of having choices made for me.
I took this approach with my discharge from hospital. Normally, I demand to get out as soon as possible. I push, and I explain why I am fine to go home. And this time, with tears running down my face due to how hard it was to finally say these words, I asked my oncologist for his plan, and for him to tell me how he wanted me to be discharged, and the best way for me to adjust to returning to ‘home life’ after three weeks of ‘hospital life’. The plan was no less a collaboration – it was as thought a deep weight had been taken from me.
I have a joking, but also very serious statement I repeat to myself around this: You are doctors, and I have a smart phone.
There’s no part of me that regrets having taken an active role in trying to understand cancer better, and to understand my own disease, nor do I suggest that there’s anything negative about wanting to remain heavily active, under a palliative path, in palliative treatment measures. For me though, I can now sit down and write lists about the things I value most in my life, and how it is that I want to enjoy and share my life with the people I have in it, for as long as I can, to the best quality that I can. And a part of that means letting my oncologist tell me how he sees my hospital discharge being implemented. In reality, I can’t even think of an example where I haven’t followed the advice he has given me, or that I’ve strongly disagreed with him. So this is less for me about action, and more about a larger mindset of how I can view controlling my treatment.
A lot of this for me is to attempt to free myself to live within the moments I have left, rather than trying to imagine my future ‘death timeline’ or count back through the medical procedures I’ve had, and what could have been if some bit of some organ wasn’t working. Now, I’m letting the doctors take charge for me. I’m sitting in the back seat, staring out the window, looking at the view, and not trying to see too far over the next mountain.
Elizabeth Caplice is an archivist on hiatus and blogs at Sky Between Branches. She has Stage IV colorectal cancer, and writes about cancer, and how it intersects with life, particularly in younger adults. As always please leave responses in the “Comments” box below.
Thanks for sharing your thoughts on control and decision making with us Elizabeth. Such an important and fascinating area for us as humans. It sounds like you have a mutually respectful relationship with your an oncologist which is great to hear. Good luck with the rest of your journey.