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Dying to tell my story.

NAS49913

There's a part of me that's scared to post this and another that feels energised.  I’m 65, I’m on the spectrum (High Functioning) and was diagnosed with prostate cancer 11 years ago.  Now, when I look back, during my treatment and whilst setting up and running two support groups for folk with prostate cancer I felt totally listened to by all those I met, and fully energised.  However, three years after diagnosis when (to the outside world) I was ‘cured’ (which I wasn't) I felt abandoned and became depressed.

Over the last few weeks I’ve had clinical tests and had it confirmed that my cancer has re-ignited and has spread into my bones (it was just a matter of time).  I start chemotherapy this coming Monday. 

Suddenly I now feel totally connected with people again, I feel energised, and very much listened to. 

I now realise because the word CANCER seems to connect with people, they really want to know what’s going on in my life, they sit and LISTEN and are FOCUSSED and fully RESPOND to what I say.

I feel so energised by that.

In the past when someone asked how I am, or what I am doing (not because of the cancer) I would try and explain what’s going on for me, i.e. me trying to make sense of the world: I would get polite empty blank looks, polite dis-engagement and effectively be ignored – “it’s weird Martin” etc etc.

Having been re-diagnosed with cancer has (it feels to me) connected me back with the neurotypical world.

How ‘weird’ is that. . . being diagnosed with cancer (again) has been the best thing to happen to me (again)?!

Parents

  • Hello and thank you for sharing your experiences with us. My Dad had cancer and I was very grateful for the support and not only he, but we as a family received throughout his care. I was always surprised, much like yourself, how much rallying there is around a cancer diagnosis and in contrast, I felt so much abandonment in my son's diagnosis of autism. Well there you go, you have autism . . . have a nice life. I have been told by autistic people not to compare the two - one is a destructive disease and the other is a neuro condition. And I apologise for that. I just feel that if support was in place that more people would understand what it actually means to be autistic. I'm learning to celebrate my autistic child who is also high functioning. He also has PDA, echolalia and sensory overload. I was very proud that he went with me to the barbers and had his hair cut just this week. He was able to communicate with the barber that he didn't want the hairdryer or the clippers to be used. He's six. And so that was very encouraging. I realised I've rambled on a bit. 

  • in reply to NAS49957

    Hi and thank you for your wonderful reply.  Sometimes, just sometimes wouldn't it be great to have someone who is hearing you actually listen to you .  And you know when real listening happens cos you can see it in the other person's eyes: they are really listening. And then they respond accordingly (not react but respond) rather than unconsciously dismiss what you're trying to communicate by blanking out.  Sounds like your son has a great mom - well done.

  • in reply to NAS49913

    The funny thing is I'm working on a podcast about this called Dear Teacher. I'll be honest - when I removed my son from mainstream to homeschool him back in February, I was disheartened and a little resentful of the schooling system. I felt like my son had been done a great disservice by his teacher. However, we've both (my son and I) learnt so much since then and I really feel that so many of the obstacles we face are based on fear and ignorance. Now I find myself in a position of wanting to use that experience to help teachers. I know there are campaigns going on to address this issue but there's still so much red tape and like Dr Roth of the Open University says, there is still so much to be done. Thank you for your interaction. It means a lot. 

  • in reply to NAS49957

    you are most most welcome - thank you for having a great conversation and sharing too.

  • in reply to NAS49913

    You have a very positive outlook. And it's really wonderful to see. It's so easy to get caught up in the downward spiral of things. I know I have. But there's no sense in that. I do really like that strapline. Thank you again for sharing your positivity with all of us. 

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