Thanks to @sonialf , I just found Elizabeth Caplice’s amazing and impressive blog
I wanted to pick out Elizabeth’s thoughts on people offering treatment suggestions to her. And processing their feelings about her issues (which I realise I’m doing here – but these are my issues I’m sharing and I’m obviously not using up space on her blog!). I don’t have cancer and I’m not terminally ill, although I do have another less-than-ideal diagnosis. Like Elizabeth, I don’t have the “mental or emotional desire” to make other people’s suggestions about my medical care / alternative treatments a part of my life.
I’m less calm than her about this, though. After all, I didn’t get a brain bypass, or a bar on talking to experts/looking at the internet with my diagnosis/having a think all by myself or with my nearest and dearest. So it really p…s me off that so many people think they need to, or should, explain stuff to me when it’s something they usually know very little about.
The BIGGEST thing that really infuriates me is how many people tell me that they DO KNOW because their aunt’s neighbour, or maybe it’s their neighbour’s aunt, has my diagnosis.
These second-hand acquaintances are either very well: what are you saying here – that I’m a malinger? Or they are very very unwell. And how is that helpful to me? I’m not myself (quite yet) incontinent or bed-bound. So is that a threat or a promise you’re making?
Below, Elizabeth writes about my first set of frustrations much better than me. You can read the whole blog posting here (and please do take the time for that). There’s lots of other good / terrible things from this “archivist on hiatus from Canberra, Australia.” Elizabeth is writing about “cancer: it’s pretty shit” as well as “a lot of things a lot of people DON’T want to read about” at https://skybetweenbranches.wordpress.com
i do not post comments messaged to me relating to alternative treatments. i have written in the past about about my reasons, and i respect all cancer patients and their own decisions regarding treatment. in return, i like to be afforded the respect of not being offered treatment options for my cancer that are not being suggested or managed by my carefully chosen multiple disciplinary team who, between all of them, have a tremendous amount of experience. i follow this path, i am happy with my decision to do so. i like to make people aware of this so they understand that this is an important thing for me. i appreciate and understand that it comes from a good place, but unless someone’s seen all my PET, CT, MRI, ultrasound, and blood test results for the last 24 months, and dedicated their life to specific areas of medicine that treat, manage and cure illnesses located in the areas of my body that are compromised, and have spend a significant amount of time discussing my needs, wants, options, and plans with me, i honestly do not have the mental or emotional desire to have this as a part of my life.
this is a personal space for me. i do not argue or enter into heated discussions in the comments, not because i think arguing and discussing aren’t vitally important, but because this is my blog space, and i started it as a tiny, never read collection of entries about how i like balcony gardening. you like the battle metaphor? that’s fantastic! you support aggressive treatment paths for all individuals? GREAT! you do you! my blog comment area isn’t going to be your place to process your feelings about these issues though. similar to what i say above.