i feel like mary, mary, quite contrary....

so, it's time to acknowledge that i am working with a profound anti doctor bias.
in truth, as human beings, i have been heartened by my interactions with doctors.  going back to the very beginning of this awful journey, we have encountered:

4 GP's;
5 radiation oncologists;
8 medical oncologists;
4 surgeons;
5 anaesthetists;
2 palliative care specialists
and registrars and interns for all of the above as well as countless emergency doctors and intensivists, and all of those who have blended into one at particularly traumatic times.

of the above from whom my daughter has received regular or ongoing treatment, i am confident to say that the vast majority have displayed a real care and concern for her as a person.

her medical oncologist is a bear of man - a grammar school rugby player type if you can picture that. he has been the most constant provider of care and intervention to my daughter.  we first encountered him about two and a half years ago, and in this time he has come to really know and appreciate my daughter, taking inspiration from her determination and continued achievements.  personally i have felt from him a warmth and compassion, and a genuine openness to discuss different viewpoints.  he encourages me to ask questions, expresses his appreciation of same, and confesses when i sometime confound him with aspects which he may not have considered.  we have seen him on average twice a month, and we have never, not once, been billed.

our GP is a warm and sensitive individual, with a lovely grasp on the nuances of family life, and a genuine care for our welfare, and the needs of my daughter, and myself and my family.  i find him to be totally non judgemental and extremely supportive. he is available and approachable, and i appreciate him for his candour, his willingness to have difficult conversations, and his general groundedness.

the surgeons who have worked on my daughter over the years have been uniformly approachable and compassionate. the (female) surgeon who has performed the most recent surgery dealt beautifully with my mother angst and anxieties.  she gave me whatever time i needed in order to address my myriad concerns and uncertainties and treated me with respect and dignity at a time of great vulnerability. faced with my uncertainty and concern she displayed sensitivity, understanding, and great patience.

as did the most recent anaesthetist, despite the fact that i will probably never see her again and she will probably never encounter my daughter again in her professional life.

so, as individuals, i have found things to like, appreciate and respect in most of the medical doctors who have crossed our paths over the last turbulent four years (there are, of course, multiple exceptions!!!).

.....and yet....

i find that at every twist and turn in the road i am confronted and challenged by their methods, their treatments of choice.  i am like the devil's advocate in this game. it is my role to expose all of the possible risks and side effects of the treatments pursued.  it is mine to voice concern, to raise the red flags, to propose differential diagnoses.......

i am like a thorn in the side of the medical establishment.

i think that's probably a valuable role..... .

however, i am caring for a young woman who has gifted herself over to the medical fraternity.  she has total faith in these men and women, in the establishment. she is always very well informed, but is ultimately compliant, and so, so trusting.

i realised a few years ago that it was not my role to fix her.  i understood that in trying to steer her therapeutic approach i was neglecting my role of mother.  i was trying to be her healer.  i came to understand that my role was to support, nurture and care for her; above all to support her in her choices.

this has been extremely difficult at times.....well, most of the time actually.  i struggle to accept the therapeutic benefit of administration of high doses of toxins, and the further toxins to assist with the effects of the former toxins....i tend to dwell on the realities of such banal sequelae as cardiotoxicity, bone degeneration, pulmonary fibrosis, fistula, nerve damage and pain.....

i guess i'm outing myself as a glass half empty kind of person here - which is a surprise because i don't know if i tend to identify as such generally.  but i tend to inhabit the contradictory space - if a doctor suggests surgery then i can tell you all of the possible consequences of anaesthetic administration as well as the actual surgery, and the issues which are relevant to recovery and ongoing consequences.  if radiotherapy is suggested i will immediately think about the damage to healthy tissue and the possible consequences in the short, medium and long term.  if a drug treatment is proposed then you can bet i am preoccupied by the possible effects on the heart and neural system, not to mention blood vessels and immune system....and don't get me started on survival benefit and quality of life issues.....

it's excruciating, actually......