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Anyone else here with breast cancer AND high functioning autism?

HinterlandSianHinterlandSian Member Posts: 22
Hi! I've just been diagnosed and was wondering if any of you amazing people also have ASD (Aspergers)?  It does feel like I'm a bit of a rareity when dealing with the surgical/medical teams.

Comments

  • AllyJayAllyJay Member Posts: 839
    Hi there @HinterlandSian...I'm not, but I've been married to one for 42 years now and also have a daughter aged 37, who is an Aspie. Her partner of many years and aged 43 it a full on Aspie as well, even with the Aspie walk. We all share house, so I'm surrounded with Aspies and know very well the difficulties that each of them have.
  • HinterlandSianHinterlandSian Member Posts: 22
    Thanks @AllyJay, It's nice to hear from you.  It seems that I will be doing a lot of educating of surgical/medical teams.  I think they were a bit shocked at my very matter-of-fact response to my diagnoses.  I had to reasure them that I did understand the gravity of it but it just wasn't something I would very over-emotional about. (I save that for hurt animals/ injustice/running out of chocolate!)
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,254
    Hi @HinterlandSian I'm not ASD. I'm just odd and--on occasion--difficult.

    I, too, have had some issues where my reactions, either overly calm or overly catastrophic, have made my medical teams uncomfortable. What can you do? We are who we are.

    Keep them on their toes. Take notes, teach them stuff they need to learn. Good luck.
  • HinterlandSianHinterlandSian Member Posts: 22
    @zoffiel It is kinda fun.  You should have seen their faces when they told me that my newly found cancer appeared to have metasticised and my first reaction was "Oooo, I'm SO going to haunt Scott Morrison!" It was hysterical.
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,254
    @HinterlandSian, dunno if I'm detached enough to just absorb a mets diagnosis, but a liberal application of black humour has been useful in the past. Haunting Scotty from Marketing though, that's a bit disturbing.

    If I am to spend time in some sort of afterlife, I wouldn't choose to follow that smirk around. He's irritating enough while I'm alive. Mxx
  • tismetisme Member Posts: 135
    Im aspie so is my 37 yo daughter its a battle 
  • WednesdayWednesday Member Posts: 5
    I am. I am having an extremely difficult time communicating with doctors and nurses. I also have other health conditions. I am so fed up at the moment with the lack of support, constant dismissal of pain and side effects from chemo that I am seriously considering stopping treatment.
  • HinterlandSianHinterlandSian Member Posts: 22
    Hi @Wednesday,
    I know what you mean. Other people don't understand the sensory overload we have especially when it comes to pain.
    As I have stage 4 I'm choosing to not have aggressive treatment and just try and stay as comfortable and peaceful as possible. 
    Do you know what your prognosis would be if you did stop treatment? Where are you in Australia?
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,254
    Ah, @Wednesday. Stick it out just to spite them.

    The system is shitty and clunky and adversarial for most folk. There is little or no consideration for anyone who is in any way neurodiverse or is burdened with other conditions. Despite the obvious fact that many of the scientists treating us are somewhere on one spectrum of another.

    Please, don't give up because you have to deal with a few fuckwits. It will be scant comfort, but those individuals make life miserable for many people. You have to wonder why, but it's a fact.

    Do it once and hope it works. The pain and side effects are routinely dismissed which grinds my gears something chronic. Just drag your arse through it and hope it will all be an unpleasant memory in the future. Don't let things you can't control In the treatment space cruel your chances of survival. Mxx
  • WednesdayWednesday Member Posts: 5
    If I stopped I guess a couple of years maybe. I'm not sure. If I was listened to in the first place it would have been discovered much earlier. I'm in Far Northern NSW.
  • WednesdayWednesday Member Posts: 5
    Zoffiel, dragged my arse this far and I've pretty much had it. Spite no longer motivates me, neither does survival
  • HinterlandSianHinterlandSian Member Posts: 22
    @Wednesday You are the only one who can totally understand your experience.  It's your decision what is the best choice for you. If you REALLY don't want to continue treatment then that is your right.
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,254
    @Wednesday if you have had enough, you have had enough.

    I've done the whole treatment thing twice now and I fully understand the urge to chuck the wretched messy business in the bin. Losing hope and trust is soul destroying, but it is also a very interesting experience if you can view it through an impersonal lens. That was, ultimately, what got me through. This shitfight is pretty intriguing. So many moving parts that are strangely disconnected.

    I guess my message is to make sure that is your choice, not a reaction to the sort of deeply unsatisfactory responses from an unsympathetic system which many of us experience. That system won't, and probably can't, change, but our survival rates are some of the highest in the world. Do what you can. Mxx

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