Neurodivergence and Cancer

Having a good relationship with consultant and nurses explaning things properply support from family and friends 

Thanks so much for sharing this with us. Having information explained clearly by consultants and nurses definitely makes a difference, as does having a good support network of friends and family around you. It can make such a difference to know that you have people you can turn to, whether that’s for practical support, reassurance or just someone to talk to. 

Thanks so much for this. I didn't know about the reasonable adjustments flag system. 

It's a helpful pointer about the training too. 

And really useful to have an advocate, i didn't know about this either. 

Do you know how to go about getting an advocate?

I think they're all good tips. 

My family members are neurodivergent too so not always able to support, or ones who could live too far away,

I'd like to find out more about advocacy 

Recognising needs and asking for help, is really important. I'm so interested that more people didn't realise their neurodivergence until having cancer as this was my experience. In my experience it took me a while to recognise and accept my neurodivergence. I don't always have the confidence to ask for support but when i do it always makes a big difference. My son who is autistic doesn't want to be seen as needing extra helo or as being 'different' so he would find this difficult too. 

My mum has been diagnosed with head and neck cancer which is also in both her lymph nodes and I only found out on 24th July 2026 aftershave came out of hospital on 20th July 2026 and was last to know as my family decided not to tell me because im neurodiverent along with other reasons and said now been July was the right time to tell me. I struggled to process this massive news, get my head around it, understand what I was told, what this meant for my Mum and how this happened in time scale sense or anything. I was overwhelmed, sensory overload and burnout. I had a ton of questions why Mum, how she got this she never smoked, drank, is it hereditary and I needed more information and questions facts etc mostly because my dad didn't really give me much other than she had cancer left side of the jaw, in both lymph nodes and had 9 hour surgery to remove the cancer and facial reconstruction and spent 5 weeks in hospital and just come out. She has district nurses daily t help her and my Dad and that was it, she was recovering as well as can be but nothing more but when asked about stage of can or anything else he be like Mum wasn't told by the consultant but they would have been before the surgery you see it on the telly and Google says you would too and I ask questions my dad says I'm making it about me when I ain't I just struggling to process this. Then I didn't hear anything off my dad till 6th September telling me my Mums cancer is then now terminal and is dying has 6 week's to live though when he told me it's 5 weeks as they found out it was 31st August and she been in hospital a week due to an infection in the lymph nodes area where her cancer is and now she has a brain tumour and the cancer has also spread rapidly throughout her body fast and her body is shutting down. She came home the Wednesday a week and half after been in the hospital and then I eventually saw her the first time in nearly a decade that weekend. It was a shock but not because of her scars or anything but because I won't get to hear her speak again, or see my mum again without having cancer that is like this I can't process this at how fast this is and gone, we could communicate via the board Saturday fine then gradually declined Sunday then when I saw her this weekend just gone she declined either worse its hard because im seeing her fade, im struggling to help her communicate or understand her where everyone else has had time to adjust to this and I haven't had that due to family issues to why I haven't seen her till now. I don't know how to communicate to her I don't know how to do small talk, I can say you been to the shops, what you had for tea but you can't say thing's like that I am struggling to find the right words appropriate words without putting my foot in it and how to support my dad who is going through a lot though yes don't see eye to eye but I don't understand why my mum has cancer and dying from it and I am the lucky one who gets saved and because I had a cancer scare last December and February this year and it was benynie cancer im 40 and why she gets to die and I get to live. 

I'm really sorry to hear about your Mum and that everything is so very difficult for you. 

A cancer diagnosis is such a huge big shock it can take a long time to process and even after a long time it can feel very wrong and unfair. 

I felt better just saying 'i love you' to my Mum when she was dying. My son wrote it on a card as he felt he couldn't say it. Sometimes i just held her hand or put hand cream on her hands. And just going to see someone and sit with them can help.

I hope you can find some support from friends or from Macmillan cancer centre if there is one in the hospital.

Maggie's centres are there for everyone affected by cancer, family members too, you can find yoyr nearest one online.  They are very calm places with people always ready to listen.

Look after yourself and I wish tou all the best 

Hi Alipa, I was thinking of a well informed friend or family member,  but it may be possible to seek assistance from a trained specialist or volunteer.

I know that within mental health services there is a formal process for seeking an advocate, particularly if attending a tribunal.

Here in Shropshire we have a local private independent charity,  Autonomy Shropshire,  who have supported autistic cancer patients along their care pathway, and been actively involved in delivering autism awareness training to the hospital trust via the Oliver McGowan initiative.

We also had nurse care navigators for bowel cancer,  who would help locate sources of support such as this,  if available. You may have something similar within your NHS Trust? Hope this helps. 

Same story here. I am now 4 years of clear mammograms and even though my cancer was early stage there is always that thought will it come back. Trying to get passed it but i know exactly how you feel. All the best. X

Thanks Kay, that's really helpful advice. I'll look into it  

I have actually used CHATGPT to help me to process my thoughts and feelings and ask questions. Whilst I know it can give inaccurate information it is still useful.  I have got it to create information to ask healthcare providers before appointments.