Newbie, autistic and scared

Hi Lyta A and a very warm welcome to the Community but sorry to hear about your ongoing diagnoses.

Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot.

I see that you have been posting in our various support group so let’s look for you to get support from people who have first hand experience or who can relate to the challenges your are facing.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

Hello Thehighlander thanks for responding. I decided to post in the few forum groups that were most relevant to me. 
what I most need is a dog to cuddle and someone to cuddle me and tell me it’s ok not to be ok, I’ve got you. 

The best I can do is send a virtual ((hug))

Have you checked to see if you are anywhere near a Maggie's Centre as these folks are amazing and you would get a hug.

Hi,

Just been diagnosed.  I am nuerotypical, but just before biopsy and everything, my In Laws manipulated my Autistic husband of 15 years and forced him to leave and divorce me.  I have lost my best firend and love of my life and he won' talk to me or give me a reason.  His parents made him leave me.  I don't blame him, but cannot understand him either.  It's like the loving quirkly man who I loved for his Asperger's Syndrome has gone and been replaced with someone I don't recognise and this was before I had my appointment.

I understand Autism more than you know, so whilst I am not you, I have a lot of Autistic people in my life, so I understand how you may be feeling right now.  I have a cat who I love very much and my cat has been such a comfort to me.  The things you are describing is pretty normal for me too.  Although I stand to loose my home, finances and everything due to being forced into a divorce I didn't expect or want.  Hubby just woke me one morning said he loved me, then 1 hour later woke me again to say he was leaving. 

I guess that may be how you are feeling, like your entired world just changed direction and it feels like there is nothing you can do to stop it.  I sat there just numb, felt sick, feel so alone.  One thing is the coping with cancer bit is easier for me because they have a system in place and have done it loads of times.  Its the other things that make me feel overwhelmed, uncertain, burnt out (I have CFS and ME as well).

Yes, I do understand how you are feeling.  I wish this wasn't happening to anyone, but know there are people who do understand Autism.  I will pray you get the help and support you need and I suggest you explain to your DOctors etc that you are Autistic and need a clear plan.

Lyta, know you are not alone.

Hugs,

Wendy (CatLady)

PS:  Dogs are great too!

Hi,

I am a fellow autistic, ADHD and breast cancer lady!! I was first diagnosed at 23 and have just had a recurrence at 29. 

I don't know if I can be any help but I'm here if you want anything. I was given a hospital passport which I filled out. It is for autistic people and it has questions about how you like things. For example I don't like being touched so I was able to explain that if it is absolutely necessary I would like to be told before and for them to explain what they are going to do. Maybe your hospital has something similar? I found it really helpful and now during chemo, I have my own room, same staff (where possible) machines that don't beep and I can use my projector light!! 

Please let me know if I can help at all, I never got emotional or upset so I might not be ideal on the emotion side!! 

Hope you are having a great day!! 

Hi SunshineKid,

Sorry to hear you cancer has come back.  Yes, unfortunately Hubby was 'reprogramed' by his mother in 2 weeks then did some horrendous behaviour and left after christmas.  He won't give me a reason, but this is the first time he lied to me and he was terrible at it.  I guess he couldn't cope and spoke with his mother, who has it in her mind that he cannot cope without her and shouldn't be maried, so wore him out on the mobile whilst I was poorly and convinced him to leave.

SHe was sending him a very high functioning man with successful career gifts and cards aimed at 8 year olds and was using a creepy habit od repeating things 3 times to overwirte what he knew was true in his mind.  he used the same excuse and exit strategy he used with his first wife, even though it was untrue (he said he was in fear fro his life) and I had to volunteer to see a shrink and doctors etc, who all claimed I was the victim via MIL and not the perputrator.  Hubby left the gifts and cards behind.

I like you are not worried about cancer, but the fact I ploughed my life savings into the home and marriage and love my husband very much.  They forced him home to their home and he was no doubt prevented from attending couselling for me, because MIL was always terrified I would talk him around.  I find myself about to loose my breast, my home, all my money and to be forced to move home and the man I love with all my heart.  It is difficult for people on the spectrum to find someone that can love their traits and I was the neurotypical who does. 

I am a christian, so it has hit me hard, but they cannot take my faith away.  I am missing my Autistic husband so much.  I will pray for you if you would like.  As for the forms, they have been really good and there were questions about how attractive I fel for my husband, which I did answer, but they offered that I didn't have to. 

My operation is coming up and I am hoping its not in the lymph nodes.  You say you are not very emotional, however I am very touched that you reached out to me, because I think that act there shows you have a lovely empathy.

Hang in there, yes your email did help me.  At the moment I am alone with CFS / ME as well, left in a home with hubby's hoard.  He will want the home and expect me to move, I am heartbroken.  I asked for a reason he left, but he doesn't have one.  I suspect he couldn't cope because his family who infantise him, just want him back and took advantage.  Their behviour was completely overwhelming for me (a nuerotypical) and with the behaviour from MIL (its not normal and completely unpredicable) and her bombarding Hubby and his routine probably gave him AUtistic burnout and he left me bedridden with no help.

NHS  and GPS and SHrink I saw (to dimiss the claims I was a danger to him, which he used as an excuse to leavehis first marriage) think hubby has had a trauma trigger by possibly his mother.  His mother is not on spectrum, but his father is and she has other issues and I have witnessed dangerous behaviour from her on others. I dislike liers or bullies (on account of my childhood), so to be called a liar by his mother who has manipulated my husband is really hurtful.  I cannot understand how someone could be so controlling and abusive to her son that she has ruined 2 marriages, one of 18 months, mine of 15 years because she is jealous of me his wife.  I put up with the behaviour for so long, but couldn't cope anymore.  However Hubby was so cruel the last 3 weeks he was here, I didn't recognise him.

I love him, but unless I speak with him, he has been forced to divorce me online and I cannot stop it.  I have litterally lost everything I hold dear in my heart, my entire world, but the cancer I am not worried about.

I send you virtual hugs.  It sounds like the hospital are looking after you.

Cat Person.

Would it be okay to do some private massages?? I can maybe help with other autistic as my brother is one too. 

I just feel awful life is being so rude to you right now and I can talk about boobs all day long!! (I am such a child and still find boobs funny!!) 

It's so great to hear from another autistic point of view as I honestly think it's helping me with all the medical and processing side of cancer. 

I totally understand if you don't want to and let me know if I can do anything for you!!

Sunshine kid 

Hi Sunshine Kid,

Yes, you can private message me.  I am a nuerotypical, but I used to work with a lot of techies on the Autistic Spectrum, so I guess meeting hubby (Actually not via work) was no surprise when I discovered he had Asperger's Syndrome.

A lot of his family are on the spectrum and I have friends with children on the spectrum, so not much phases me now.  If it helps you then great, I think it will help me too.

My op date has been put off for a couple of weeks.  I am actually relieved they are removing the boob, because hopefully it hasn't spread.  It was in both sides of my family, so since my early 20s I'm a bit older now) I have had them monitored.  So it was a high chance it may appear.

I have my cat sat next to me now, he's such a blessing, but he misses Hubby like I do.  Hubby's friends are also supporting me, although he hasn't contacted them.  It's weird, as I feel more upset about losing Hubby than losing a boob.  The whole process of losing a boob has been explained to me and they are giving me an implant.  I kind of expect that.  I guess some of Hubby's Aspie ways surprised even me, as he just left.

I know it wasn't me, but his parents and its so sad, as I know he will be heartbroken too, but they will ensure he finsihes the divorce.

I miss his random chats about programming and the the moon and stars and all the good things we had in common.

Its fine to message me.

Cat person

Just to let you know that I have traits of Asperger's Syndrome and I have Melanoma. I'm heartened to see that Sunshine Kid is as unemotional as me, and wonder if that has led to any problems with communicating with her oncologist.

In my case he wrote to my GP, without my consent, enquiring if they could substantiate if I was learning-disabled and hence vulnerable!! This because I did not take his advice without challenge and despite the fact that I had insisted on receivig and reading the scientific papers behind studies on the immunotherpay options.

I'm also disinterested in that which most (neurotypicals?) are looking for i.e. living as long as possible.

The shortest time impeded by incapaciting symptoms and/or debilitating side effects from drugs, are preferable to me rather that the prospect of living a life amongst neurotypicals and all their emotionally-related problems and motivations.

Hi,

Sorry for the slow response, chemo brain!! 

I have had alot of issues with communication and understanding with the team. My mum is my hero so will go through everything again when we leave. I now see females (where possible) the same people (again where possible) and have a great BCN who took loads of notes when we first met about how I 'work'. The passport I wrote about has been incredible and I feel way more aware of what was happening than I did with my first cancer. 

With the life stuff, I found the doctors and crew to be very pushy and I struggled to explain what I wanted and felt. Luckily, I had my mum who, wants me to have a long and happy life, but understands that I want to have a great quality of life, even it it is slightly shorter. I also asked for scans, pictures and my full report to help me understand. Some said yes, others said no and I haven't received half of what I had asked for. I find that very weird as it's my medical notes!!  

I may have missed the point (sorry if I have, I do that alot) but hopefully it made sense and helped a bit.