Hi ginny, as long as she's got someone to talk to (you) it'll help a lot, remember the people on the forum understand a lot have been there done that in case you or your friend want any info come on anytime. Best wishes... Billy 

Hi there..

Bless ya, I worked with autism some 15 years ago, for about a year .. one thing I learned is the spectram is huge .. and what's right for one isn't for another ... l also have a niece and nephew with it , and learned how to help them over the years .. one has finished university the other doing good ... 

All l can say, is don't over panic .. she knows you very well over 30 years .. always good to ask her if you can help .. and trust me just a text saying thinking of you .. or saying your be there if needed, will mean more then you know .. try to go with how things are , as she may change daily, like moods and side effects... but having someone calmish is really good ... 

So try not to worry ... it's new to all of us when we get cancer ...  that's a big spectram too ... Chrissie xx

Lorraine is living with me, she’s no family, well, two brothers but not near here in Saltburn. She was my support aftermy divorce, my degree was Law. I went into teaching at 29, four children under nine, my husband met some body else. I took my children, left and stayed with her for awhile until I had my own home. She’s my eldest daughters godmother.

The last two years she’s been tired, she’s 66, and also very different. She’s retired. I noticed it last summer really, she just changed. Things we did she hated, simple things like a walk, she’d always be well, distant. Sometimes aggressive when she spoke to me, everything was my fault, it still is. I love to garden, she’d just want to sit with her computer.

i feel terrible saying, like I’m betraying a friend, yet, I have no one. She just changed.

I asked her to do simple things, she forgot. Then when she started a cough last year, I told her to go to see her GP, I once had pneumonia and I found her using my inhaler, I was very worried, like now. 

This summer she’s been worse. I’m trying hard to do all I can, but I can’t do anything right, nothing. I have ACTH, so I know what Hospital can be like, I’m just recovering from a kidney problem, I need steroids to live. I don’t produce hydrocortisone. No immune system. I’ve changed the house so she’s downstairs next to the bathroom, it’s easier for her to access. 

Tomorrow we see the Consultant and know exactly what will happen. Obviously I can’t sleep, yesterday I cleaned the house. 

How she has changed is hard. I feel like I’m in the film Gaslight. She’s always been so calm, now she shouts about daft things, provoking rows I don’t understand.

Being a high Function Autistic adult I can see a pattern of altered behaviour, the tiredness, moods, sometimes aggressive and she really does not know. I’m trying to be positive about what she is told, however, I’m not so sure. She’s over reacting, meaning if I go in my kitchen she shouts. I try to divert her and how she is. I don’t know if this is the real cause. Her brain. I have a diary. I really hope I’m wrong, however, tomorrow will answer some of these things. I’m actually petrified. Yet, when I needed help she gave me it. I have nursing skills. Thank you for replying, it has helped. I feel so alone, helpless. 

Brother starts Radiotherapy tommorow on brain cancer/tumours. started 9myears ago with bowl cancer and then lungs.

Need to know more ??? is his time limited ?

Hi Ginny...

Firstly, I'm no expert , just someone with a little background with autism .. so I understand how complex it is for you ... but I will try to explain the best way l can ...

When we get diagnosed with cancer, it feels like someone just told us, we may live a while, or we may not .. it shakes our world up side down ... I had that diagnosis in July 2017 ... l had a grade 3 .. l thought I was looking at a short time left .. it messes with our brain ... nothing will ever be the same again .. 

I took myself off and shut away for two days crying / yelling and cussing cancer.... till I could get my head around it all .. I'm only guessing, but l think she is needing time to process her thoughts .. when some with autism, take it more logically... I'm the same sort of age as your friend ...

We're we have had a lifetime of being in control .. suddenly it's taken away ... we get emotionally high then low ... wer all over the place ... where autism likes structure.. and to understand facts, and what to do ..  so at the moment it sounds like your on two different paths ... please try to understand, she's just trying to get through ... and that early stage waiting for things to happen is the scariest of all ... you can't fix it .. you can't make it better .. but you can just be there .. as the control now is in the hands of her oncology team ... so she's going to feel confused angry and lost at different times ...

I'm going to tag [@davek]‍ as he has more knowledge then me of autism ... but please try to stay calm .. and just go along with how shes feeling each day ... and try not to make sense of it ... there is no sense to cancer ... Chrissie xx

Hi Ginny,

Hearing that sort of news about a good friend is always difficult for everyone, whether we're ASD or NT. No-one knows quite the right words to use and we all worry about getting it horribly wrong! You're not alone in feeling that way. Cancer is scary, anyone who doesn't think that just doesn't get it.

Just be yourself, tell her you're worried about her and want to support her however you can. It seems like she's had some sort of personality change. This may just be because she is petrified about having cancer (even if she's only just been diagnosed she will  have been aware of her own symptoms for months). 

Best wishes

Dave

Thank you Chriss

i went with her to the oncology unit today. She saw the Consultant and the team. I found it 

difficult, the lights, the noise, however the staff were all so supportive. 

What I found Hard was she’s two people, at the hospital so friendly and spoke softly to the surgeon who will do her operation, also her nurse. But with me, no. I have to wear sunglassses and I wear a white hooded top, it’s my comfort zone, and I go into “meltdown’. I tried to explain, I’m used to being stared at, that is how I am. 

They have formed an excellent plan, and I’m so thankful, yet at home she changed.

i know how unwell she is, yet, it’s like it’s my fault, she says my autism and the fact I’m ACTH, no immune system, I’m often unwell with flu has caused this. 

This summer has been a terrible time, and I need support, she says she is fine with no one.

i phoned my sister for some connections to help me feel, I don’t know, some family. However, she’s so aggressive and turns it around that it’s me. That I’m odd. That I’m not reacting normally. I’m just so upset, I wanted to make a list of things to do leasing up to Christmas, simple things. Not eating out, but maybe a short drive. No. However, that’s been how it is for the last few months. I’ve bought books as she reads to distract her, yet I’m sinking. 

Thus is the first time she’s been ill all her life. I tell her she’s unkind and she says it’s all me. It’s not. I just don’t know what to do at all, and I’m feeling unwell and sick, that’s stress. 

Her ooeration is the beginning of January, after that she will know more about follow up, radiotherapy or possibly chemo. Also, long term drugs.

i shouldn’t complain as it’s not me, all I know is I try to talk but it’s no use and the person I know has gone. 

She does blame me, yet I have managed living with a compromised immune system and become philosophical, I take each day at a time. Thank you for helping me. I just, like you say function with structure, it’s gone.