Working in the education field, there is a lot of emphasis on power. Children, especially those who have suffered disruption or trauma in their lives, need to feel in control of their lives. To feel they have choices, and that their needs, wants and feelings are genuinely being considered. That we take their grievances seriously, and any remediation takes into account not only what we feel to be the facts, but also how they feel about both any given situation, and how the adults around them handle that situation.
I have had my power taken away, over and over and over. I really don’t know how to take it back, or even if I can. As an adult I just can’t express just how hollow and sad I feel right now.  I want to walk away, have nothing to do with Canberra Hospital, or the Endocrinology Unit, tell them all to just fuck off and get out of my life. But I am trapped. I can walk away, but then I risk a return of the cancer unchecked.
Last year, after having my thyroid removed, I started this horrible journey with the Endocrinology Unit at Canberra Hospital. A dismissive doctor, who contradicted everything I said. I have been stuck with this stupid, defective body for nearly 50 years. When I say I don’t fit in the box, I am not trying to be special, or get preferential treatment, or somehow make myself out to be superior. I just don’t fit. If there are two ways that a particular issue will manifest itself, then my body will find a third, weird, totally unexpected way. I had a 55mm cancerous tumour, hidden in my throat, with no external swelling, or indicators on standard tests. Sure, loads of easy misdiagnosed symptoms but because I don’t fit into a number range, I was dismissed. So many times in my life, I have had years and years of serious illness with no explanation or misdiagnosis, only to have an organ fail, and have doctors say “oh wow, well none of the tests showed X, but wow, you have this weird manifestation of the problem, you are unique/unusual/unexpected”. I am sick of “u” words.
Apparently my doctor doesn’t put people in boxes…… so she said. The first thing this woman said was “we need to get that BGL’s under control”. Ummm, I would probably like you to focus on me not getting a secondary cancer, before you ride that old diabetes chestnut again. I had Hashimoto’s, probably for decades. But apparently all the various endocrinology investigations I have had over the years, summarily failed to diagnose a major auto-immune disorder (that impacts on glucose absorption) that was slowly damaging my thyroid until I got cancer. Oh but apparently its quite common for this to go undiagnosed …… a box. I have an allergy to iodine; ALL types of iodine; ingested, on my skin and intravenously. I know this, because when I have it, I have an allergic reaction. But according to this doctor, apparently, lots of people think they are allergic, but aren’t really……. another box. And despite saying it over and over, somehow when I talked about being allergic to iodine in food or on my skin, I wasn’t actually making any noise. As a result of this failure to listen, a major stuff up happened with my RadioActive Iodine treatment, with it being cancelled at the last minute. Apparently that was the Nuclear Medicine Dept and my fault. This mistake caused a 4 month delay in me receiving RAI, increasing my risk of secondary cancer. And when I finally had the RAI, I came down with the flu, and suffered a weekend of isolation, so terribly sick that I thought I was going to die, with little medical attention. When I complained, I was met with a stone wall of refusal to accept any fault. To add insult to injury, apparently the hospital “doesn’t have duty of care” when I am having treatment, and “I have had more attention than anyone else over this cancer”. And when I complained about this, I was incorrectly interpreting, and am obviously wrong in my views. It doesn’t matter that my husband was sitting beside me, and even argued with this woman at one point; it doesn’t matter, I was wrong.
Despite following the complaints process, every step of the way, any power I might have held in my own health care, has been progressively stripped away. How I have been treated, how its made me feel …. seems to not matter. Its not important to the Canberra Hospital how they have impacted on my feelings. My mental health, the trauma I have suffered …. it doesn’t seem to matter to the hospital. As long as they have decided they are right, how they come to that decision, and whatever damage they do to me doesn’t matter.
I could have loaded all my grievances onto the internet. I could have complained online, put my experiences onto news sites, web forums and chat pages. I would have received a chorus of outraged support, with commenters and re-posting.  I could have rubbished both this doctor, and the hospital all over the place. I would have had the same outcome, but perhaps I might have not felt so stripped bare and brutalised.
July 2018
When I initially wrote this, I had hit a stone wall, and was at a loss. Much has happened since then.
I made a complaint to the Human Rights Commission, primarily to have my doctor at the Endocrinology Clinic changed without being placed back on a 2 year waiting list. This was managed (although I did have to wait an extra 3 months after my March follow up appointment). I also made a complaint further about the treatment from the hospital. Their answer was to resend their initial response (not at fault), and punt it on to the doctor to answer. While I wasn’t happy with her, she wasn’t at total fault for the behaviour of the hospital staff, and its unfair to make her responsible for everyone else. I was given the opportunity to attend mediation, but I declined. I just couldn’t face yet more attacks on my mental health.
I read somewhere, giving up doesn’t make us weak; it just acknowledges that we have reached our limit. I had reached mine.
I have since had my follow up with a different doctor. She was a bit combative, I think assuming that because I had made complaints, that I must have been unwilling to accept diagnosis or treatment. I have always been quite willing to undergo treatment (what idiot would want to risk secondary cancer?), my complaint was the way I was treated in the process.
Now, it will be years of follow-ups and testing, to ensure I don’t get the cancer returning. Oh, and probably constantly admonished by the doctor on my failure to control my BGL’s, but they will do nothing to try and understand why; just blame me . Same as always.
