I've just spent 4mnths with various hospital introduced infections such as staff n golden staff....and it just wouldnt heal, spreading & disfiguring as it went. Eventually I rejected medical care & saw a dermatologist, who took me off all the medications and I healed within 2 weeks.....but i just wasnt feeling any better...pushed myself along as best I could & three weeks ago had an ulcer n toothache so saw my dentist just incase it was a simple tooth infection making me feel so ill. Now, I should mention I live in a regional country zone, so usual wait time for any 'specialist' (including Dental) is 6-12 weeks. Luckily (haha) because I suffer from medically triggered PTSD from prior cancer treatments etc in my youth, he saw me immediately apon my call before I could change my mind :-) I generally only go once every year at best. He was suspicious of an ulcer (I chew the inside of my mouth & tongue in my sleep, side effect of PTSD) & referred me to a Surgeon. He diagnosed on sight a malignant tumour squamous cell, and booked me for surgery within 36hrs....or he would not be available again for 2-3 weeks to do it, which would be the difference between life & death apparently. He would not refer me to Sydney as they would take time too whats the point Im ready to go now. My 'family' & support networks are unusual, fragmented over large distances and I have 1 daughter who's only sense of real family is me, who lives in a city 500Kms away. He would not allow me to fly over to see her, or prepare and ensure a network of support or practical plans with friends & loved ones. I objected to this and at that point was threatened with being put into 'mental care'(another side effect of admiting you have PTSD, they can 'lock' u up) and be forced to comply with his wishes, he would call my daughter & tell her. Obviously this was to be avoided in my view, so I complied, was only able to call my daughter regarding issue, or what little i knew of it, and had my tongue mostly removed left side following day. I now can't talk to be understood at all, its devastated my entire social & financial world, (I was a speaker/marketing & management/media)it also allowed dreadful miscommunications & misunderstandings, of which some relationships can never be repaired as a result, or even maybe should be, but could have been avoided perhaps with a pre conversation & plan.
Prior to surgery & after the tumour was cut out I was refused a HPV test, or antibiotics by Surgeon who offered no explanation as to why, even though I had cervical cancer at 19yrs of age due to HPV, Im 45 now, and had recently had resistant staff. I did smoke 10 cigarettes a day for 10-12 years, that obviously over an open chewed tongue wound was probably the cause, but still...shouldn't I have the HPV test? He didn't say if it was cleanly removed or any margin etc after surgery, or even specific care instructions for that matter, just indicated stage 3, chemo n radio next, we have a 5 year relationship now. I feel we are so incompatible in styles he actually made me much more ill emotionally & mentally, even though I should feel grateful he cut it out? I'm glad its out....but why do I feel so violated now :-( so sad, so alone in some ways...like no-one really understands, and now I can't talk, no-one does. I had a Pet Scan because of these feelings, and it came back 100% clear. The subsequent 'team' planning meeting let me know the tumour had a clear margin around it, size (2.5mlx1.5mlx.5ml deep left lower edge of tongue, & stage 2 not 3!!! However because this cancer type recurs? I would have chemo (said no, isnt it gone??) and radiotherapy (indicated ok...but I dk? What should I do? Its so unhealthy!) I gave up smoking 6mnths ago when I moved to remote location for a new relationship, away from family & friends,I've never really drank much, I live an active fit lifestyle prior, was attractive, obviously had PTSD but other than in medical situations was generally a confident capable & outgoing girl. I want a HPV test n if its there can they kill it please, but regardless of what I do does that mean nothing in the statistical survival race? Is it really worth radio? Has anyone not done Radio n survived? I wish I'd found this site sooner (or even been given the time!)& had the courage to stand up for myself, now I've lost so much of my life for the want of a little preparation! and I can't even say that cause that means I'm ungrateful :-(.