A dear cancer blogger, someone whom
I would like to say paved the way for the rest of us and set the bar so high that we could never achieve her level of greatness, which might I add is greeeeeat for the self-esteem, was recently given the 6 month mark. Dear Melanoma, Emma Betts first and foremost is not a blogger, Emma is not her Terminal Melanoma diagnosis, she is a top chick with a heart that knows no boundaries, she gives even though life has taken so much from her. This person gives care packages to people who are going through their own troubles, she messages me when she is in Emergency with her own problems to see how I'm doing. Emma is more than her cancer, more than her blog, she is the type of person that if you're lucky enough to meet one person you admire or a hero, you'd be bloody lucky if it were her.
So 6 months, I remember initially I was told weeks or months, but I kept beating little milestones I would set for myself, with each treatment or surgery that would extend my life by mere months or even weeks, I would tick off invisible dates in my invisible calendar in my mind. I had myself dead in the first few days, I'm sorry to be so blunt, but that was the first idiot of an oncologist I had upon initial diagnosis telling me if it came back I was incurable. Just a bit of advice to any oncologists out there, new or long-term practising, because this guy was literally months off retirement, so he should really have known better. DO NOT, I repeat DO NOT advise a patient that has not even started treatment with you, that if this "life saving toxic sludge they call chemo does not work and the cancer returns they are incurable, that shit sticks in a patients head like fake tan to a white pleather chair. Just keep your mouth shut, unless you're asked a question, don't answer or of course feel free to offer considerate advice, not stupid bullshit! Sorry, but it still does my head in that a so-called professional could be so insincere and quite frankly stupid. This idiotic advice hung around my neck like an invisible noose from the first ultrasound I had confirming my cancers aggressive return. I was planning my funeral in the car trip home and crying that I'd never get to see my niece go to school or the next season of Homeland.....I know the big issues.....right.
Anyway I returned to my initial oncologist, because that's what you do right? Bowbow, you look around, you visit different specialists, you ask questions, you do all the things you probably didn't do the first time you were diagnosed, because you just do what you're told the first time and that's why you often don't get the best treatment for your cancer the first time around, rarecancers.org.au have released an app called CANrecall and it's a great tool for people having meetings with oncologists and surgeons, it gives you the best questions to ask and also records the session (at the specialists knowledge of course). I went back to my original oncologist and he was a couple of weeks off his retirement, in between talking about his new tinny and all the retirement fishing he was going to do, I asked for his advice, which was a referral letter to a surgeon that does a very risky surgery.......that was it, see ya later, the fish are biting!
I then looked around and found Prof Tattersall, again an older guy, but he gave me hope and options, bingo, I had my oncologist!
My point to this blog, which probably sounds very familiar to many of my previous, is that timelines are time wasters, all they do is put invisible finishing lines at your feet and even if they don't exist, you will keep tripping over them, they consume you, so first things first, if you can, turn those death alarms off, put them on permanent snooze and live for tomorrow, rather than waiting to die tomorrow.
All easier said than done, people always ask me "How do you stay so positive when you know effectively you're dying? My answer is I don't stay positive, I have my days, minutes and hours. The only thing that has kept me going mentally is the fact that I still don't believe it's happening, somehow I'm going to wake up tomorrow and it's all going to be gone and I've only just now had to start to realise that this shit is real, this breathlessness, this weight loss, this tumour fluid build up in my stomach, this never-ending tiredness, loss of appetite and all of the other symptoms that are recognised as "end of life symptoms" are exactly that, I'm dying, sooner rather than later.
You know I was admitted a few weeks ago and once again everyone thought I'd not be getting out, well here I am at home typing this shitty blog to prove them wrong, but they are just as happy to be wrong, as I am for them to be wrong, every single person in that ward, the wardy to the Doctor, is on my side and boy does that make a difference, having people on your side.
I remember after finding my new oncologist and surgical team, we had exhausted at that stage what we thought were all options and one of my surgeon's rang me late in the evening to tell, me the rest of the surgical team were not on board with performing more surgery, so that was it, you'd be lucky if you got 6 months. I remember the sharp stabbing pang of disappointment, the, this isn't real daze that envelopes your entire body, fuck off it's just a bunch of lumps, cut the bastards out and keep cutting them out when they come back, how hard can it be? Can I have a pee bag or a poo bag at least, no, too risky to go in and too much scar tissue. He was deeply apologetic and sad that he couldn't give better news, but that was it. The next night I was still in a WTF daze and had to drive to my local GP on the Central Coast, shout out Karen Douglas, not that she needs it, her patient list is out the door. Karen was so kind she took me in, in front of 20 other patients and just sat and listened to me, sometimes that's what you need, not advice, not bullshit, just an ear to bend, whilst you cry.
6 months, shmix months, timelines, shmimelines, doctors schmoctors, nurses, schmurses. I've gone through more deadlines/timelines than Napoleon Perdis has gone through bronzer. We are all equal when it comes to living and dying, none of us are more important than the other and none of us have a special secret about extending our lives, even though some of us may think we do. For the five millionth time people, broccoli will not CURE my terminal cancer, my cancer eats all my nutrients now, I don't even get any nutrition from food anymore.....sorry, but it's true.
I am still scared, I am still here and for now, the 4 weeks mentioned last week are down to 1 week, more invisible timelines for me to ignore.
Stay Fabulous Rockstars and let's not countdown the deadlines together, let's ignore them together! ❤🤘🏼
Emma, much love to you and yours ❤❤❤
A few photos from today 💋