Despair

Autismandbc
Autismandbc Member Posts: 20 ✭
edited June 2021 in Newly diagnosed
Hello. Have had surgery and will start radiotherapy on the 19th June and estrogen blocker for 5 years. Had Asperger's Syndrome and depression already. I'm 53 and after an horrendous life filled with cruelty I thought I would get through this easily as it is not the worst thing that has happened to me. No. I am numb, have developed a hatred for men and spend every day fighting off suicidal thoughts. I know I will get through however I am seeing myself from an out of body sort of sensation where I feel as though someone else has taken over. I feel like an entirely different person and am aware that I am developing some kind of disassociative personality disorder. Autism is exhausting and this on top of it is like being buried alive. I don't want to add to anyone's depression but I really have nothing left to give. I don't know what else to do. 
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Comments

  • MicheleR
    MicheleR Member Posts: 352 ✭
    Hi @Autismandbc,

    Welcome to this group. There are many lovely people who understand the difficulty of a breast cancer diagnosis, treatments and emotions around it. 

    Noone will judge you here. 

    How have you come through your surgery? What did you have? Maybe talking a bit about it will help. 

    It is a lot to deal with but you are in the right place. Everyone struggles from time to time but things can get better. 

    Hugs to you x

  • Afraser
    Afraser Member Posts: 4,449 ✭
    @Autismandbc

    As @Halla suggests, now is the time to contact your psychologist or psychiatrist. Many people who experience cancer, including those with no prior emotional or mental stressors, can have significant emotional reactions. Even those who feel they are handling the diagnosis and treatment well. You will get through it but you will do much better getting the help you need and deserve. Best wishes. 
  • Cath62
    Cath62 Member Posts: 1,482 ✭
    Hi @Autismandbc, I am so sorry yo hear what had happened to you. The others have given great advice. It is important to tell your health care team how you feel and seek support. This is a great forum and we are all here to support you. The others here have given you great advice. Let us all know what's happening and how you are going with it. Sending you a hug. 🌺
  • FLClover
    FLClover Member Posts: 1,580 ✭
    Hello 🙂. Quite an ordeal there. Sounds like you’re having PTSD or similar, which is what I also had right after my first surgery. I still have moments where everything seems surreal, and I feel like I’m someone else. They are not that long though. I got the help of a great psychologist for about 6 months last year. I got her for free through my oncologist. She helped me deal with the cancer diagnosis, but also with the trauma I’d been storing for years prior. A lot of shit came out last year. I just thought how on earth did i manage to keep all that trauma inside, and work, and have friends etc?? Sheesh!! It was very heavy, and I’m so happy the bulk of it is gone. Even the bca doesn’t seem as frightening now, even though I NEVER want to have it again!!! I still use some of the techniques my psych gave me, as well as others I have picked up here and there. I also have meet ups with breastie ladies similar to me. Step by step, little by little, I’m getting there. I just refuse to believe there isn’t joy in life. There is and I know what it is for me. I just need to be brave enough to seek it and experience it. It makes the heart sing and pain disappears. Seek your joy. And def ask for a psychologist if you can, as they are very helpful, even if just to unload all the pent up emotional crap on them. 
    Keep in touch ♥️
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    It's a dark and messy time for you @Autismandbc There's bugger all I can say that's helpful but I hear your distress. MXX
  • Autismandbc
    Autismandbc Member Posts: 20 ✭
    Thankyou so much everyone for your comments. I haven't had any friends for years and I know this has contributed to my dilemma. I will go to a psychiatrist because I do not take any meds or speak to any people apart from an occasional interaction at Woolies when I collect my online shopping. I have 3 dogs and four cats who are my family. I have a 20 year old daughter who also has Asperger's and she works as well as uni so I don't tell her a lot because she is extremely sensitive. My mother betrayed me 14 years ago in the worst possible way and since then I have been unable to trust anyone, especially women. I have gone from being the life of the party to a hermit. Never had a mammogram before and the first one detected invasive lobular cancer only 8mm. I should be grateful. The surgeries were fine but the 5 biolopsies were torture as I have dense breasts and Autism means that I am extremely sensitive to pain, sound, bright lights. I always have to have huge amounts of painkillers at the dentist and this was no different. Was advised to start hormone blocker before radiotherapy but I'm not because the oncologist said it's usually started after radiotherapy but I could start straight away if I wanted to. I'm not because I don't know how I'm going to handle the radiotherapy and she didn't say that I should start hormone blocker, then go off it for radiotherapy and then start it again like Halla. With the menopause on top of it all, it feels like I'm being punished for being a female all over again. Autism makes you feel like a freak, completely disconnected from other humans with a strong connection to animals. In my case anyway because we are all different. If it were not for my daughter and my animals I know I wouldn't still be here. Breast cancer is not worse than living with autism in a world where people judge you before knowing you and are suspicious about those of us who are NOT disabled but just different. There is no cure for people who discriminate based on their own insecurity of the unknown. My instinct is almost psychic which is why I suddenly decided to get a mammogram when I did and not the 100 other times I had thought about it in the years prior. That instinct has saved my life many times in some very dangerous situations my entire life. There are people walking around today who would not be had I not had a premonition. That is hardly a disability and it comes from my autism because it's not uncommon in our population. Neurotypical people have just as many challenges as autistic people, except they are different challenges. My brain is so active that I dream/nightmare every night since I was a toddler. Anything which has happened during the day is replayed every night for years, so I'm having biopsies in my sleep over and over again. No medications have ever fixed this one most hellish issue, hence why I'm not on any now. Wow, my manifesto of misery. I know things will get better because they always do, (apart from the bizarre sleep bs) so I just plod on growing and cooking my veggies and drinking beet and curry leaf tea. 
  • Sister
    Sister Member Posts: 4,961 ✭
    I don't have anything to add that the others don't except to say that I understand how Asperger's will colour your experience of treatment.  I hope that the medical professionals that you have are open and understanding of the difficulties you face with navigating the medical system - as you say, bright lights, noises, etc.  There is beginning of acceptance that neurodiversity is not a disability on it's own, rather a different way of processing the world but that it does come with challenges, some of them severe.  Take care.
  • June1952
    June1952 Member Posts: 1,935 ✭
    Hi @Autismandbc.  Welcome to this wonderful site full of (as AllyJay says) "eclectic lot".  There is always someone on here to chat to and you may well find a special friend to meet up with.  Perhaps you can mention your general area to make that connection easier.
    Many of us have had very hard lives and our animals really are our best friends.  If you would like to check out some of our 'furry kids' go to:  https://onlinenetwork.bcna.org.au/discussion/comment/92526#Comment_92526  or if that link does not work just put 'pets' in the search bar and it will come up.  (I am not great with technology).
    If you can chat with a counsellor of some sort that may be very helpful, although with your condition you may not find that easy ?  Perhaps call the BCNA or Cancer Council help lines.
    Remember you are not alone in how you are feeling and you will be in the thoughts of many of us.  Keep in touch and vent on here anytime .
    All the best   💖
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    edited June 2021
    Gawd, @Autismandbc, hospitals can be such zoos. I'm light, scent and sound sensitive-- though from a mental health perspective I've never been diagnosed with anything apart from being difficult and occasionally  depressed.

    After an hour in most hospitals I'm trying to hide in the loo to get away from shrieking children, mindless announcements and relentless scurrying . Problem is, it really stinks in there, so then I try to talk the door bitch into letting me wait outside suggesting they can ring me when it's my turn for whatever horrible fucking thing I'm there for. Answer is always 'no'

    It would be lovely to experience something less challenging. So glad you've found a more sympathetic place.
  • Autismandbc
    Autismandbc Member Posts: 20 ✭
    I feel you. I won't leave the house without earphones because a screaming baby which is being ignored makes me want to melt into the carpet......
  • Halla
    Halla Member Posts: 185 ✭
    How’s it going @Autismandbc? Have you had your radiation planning session?
  • Autismandbc
    Autismandbc Member Posts: 20 ✭
    Hello Halla. How are you? I'm a bit happier than last week because my radiotherapy starts on Thursday this week. Feels like I can see the light at the end of the blackness. Just wanna smash 3 weeks of radiation, start popping the estrogen blockers, and get off my fat arse and lose 10 kgs before November..... I'm going to go and get some melatonin for sleeping because of the friggin hot flashes all night that make me feel cursed by Satan. The best part about this week is that my evil neighbour who tormented me for 5 years, is MOVING OUT!!!!! That witch attempted to try and have me move out after directing repeated abuse at me in ways which you can't even imagine, however I kept getting back up and my refusal to be beaten resulted in her giving herself a mental illness and too scared to even look at me. At least now I can focus on my treatment without having to worry about her. How is it in Melbourne? I wish the people would rise up and refuse to be locked down every time someone gets infected. We need more women with level heads in Canberra to even out the idiocy coming from the men. I would have a go but they would discover all my past mistakes and tear me to pieces like a shark feeding frenzy. It it were up to me all people who are infected get sent to Alice Springs.....
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