NicOz

Bio, eh? Fortunately I:
*Am mother to spectacular just turned 6!) year old, first and foremost.
*Have amazing family and friends.
*Have best Neurosurgeon and RadOnc in the world (IMHO)
*Despite ridiculous amound of craniotomies, am still functioning independently, though have become inherently lazy. Meh.
*Still have enough good brain matter to get rid of the deadwood in my life. Eg. 3 useless oncs and an equally useless (now ex-)partner- nothing more frustrating that a “carer” *snort* who’s always stressed and needy and looking at you like you’re going to die any second. Decided I felt more confident to go it alone than with an albatross around my neck. Life is too short to let people like that drag you down and suck the energy out of you and the fun out of life :P)
*Have fantastic GP to coordinate my care – has has been more assistance and more pro-active than ANY onc I have come across- mel specialists included.

Pre-mel I was a clinical research manager mostly working with leukaemias and anti-coagulants/DVT/PE in haematology in a tertiary hospital here in Oz. Now? Staying alive seems to be taking up far too much time to hold down a job these days, so I subsist on benefits and am treated thanks to our fantastic Universal Health Care scheme.
I was diagnosed with brain mets/melanoma 3 years ago on April 2008. And given that, I’m happy to remove people from my life who were actually relatively important once they become a hindrance, I have no qualms about doing it for people who are of no importance in my life- stage 4 mel tends to focus one’s priorities. I am a firm believer that emotional and mental health are essential in maintaining the strength to continue smacking mel in the ar$e, and allowing me to be in the best shape I can be for my daughter, so if something is affecting those two aspects, they will be put to the side and either ignored/dealt with (depending on importance/care factor).

Melanoma is a huge inconvenience and pain in the bum. It may kill me some day, but meanwhile it can bite me- things to do, places to go, people to love.

The pic? It’s awesome. The suturing job is so good I’m thinking about asking the neuro to quilt something for Georgia 🙂 The little white dots? Scars from the SRS headframes and burr holes from surgery. The haircut? Admittedly the most tragic one to date, but with good reason.

They are now at the point where they feel unable to attach a stereotactic headframe for surgery out of fear of “shattering” my skull (their word) and may also be unable to operate unless they can gain access through a previous site opening- I figure they’ve got 8 to choose from so the odds could be worse 😛 Had we known, I would have requested hinges be attached 😀

I don’t do bandana’s in real life anymore (uncomfortable and horribly hot! So wigs are out of the question) so I’m not bending over backward to keep it hidden on here either (anyway, why shouldn’t I show off the fantastic “quilting stitching” by my neuro? :D). What is, is. If my 5 year old can deal with it, then it’s a stiff cheddar moment for adults IMO.

It’s quite tragic that many people on this board see only the disease -melanoma, and not the people behind it. (And how sad that because of their closed minds, they are unable to see the more subtle forms of hope, education, support and encouragement, that many people in the most final stages of their disease, offer to others.)

Some need to start showing just a little empathy toward the situation others’ are in, rather than assuming their postings are made simply with the purpose of upsetting others’ who may be feeling anxious. (heads up- we’re ALL anxious. Especially the people posting about something distressing. There is always the option not to read (or finish reading) a post you may find distressing. And if you find many posts distressing, it may not be the right place for you- in which case, you have the option to leave.
And ‘anonymous’ may give you a false sense of security- although not a visible/recogisable moniker to your peers on the site, it IS visible to the MRF, so think before you attack.
Unfortunately this place lacks an ability we have in real life- if someone offends you in your home, you can throw them out. Here it’s (often unfortunately) not so easy as has been discovered by many.