Neurodivergence and Cancer

Emma - Online Community Team 20 days ago

32 replies
62 subscribers
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At Macmillan, we are proud to provide support to everyone affected by cancer. However, we know that some communities experience unique barriers to treatment and support.

Leeds Beckett University have been conducting important research into the unique challenges faced by neurodivergent people living with cancer. Include it here Some people feel unable to speak up about being autistic and articulate their individual support needs. These can include:

Difficulties with the physical hospital environment, for example, noises and crowded waiting rooms being overwhelming
Managing appointments, including navigating to and around the hospital
Communication difficulties with healthcare professionals such as feeling misunderstood or feeling a lack of empathy
A lack of clarity and clear explanations regarding treatment plans and procedures
Cancer-related support groups feeling inaccessible, often because of the support being group based or not involving other autistic people
High anxiety leading to distress and, in some cases, avoidance of medical environments and procedures

One participant from the study shares, ‘not everyone can cope with support groups as they find group participation difficult and stressful. An online peer support group would have helped myself and my son.’

We have also noticed members sharing challenges faced as neurodivergent people on the Online Community. However, with so many members it can be difficult to find others who have shared experience to connect to. That is why we have been working closely with the research team at Leeds Becket University to create a dedicated space for neurodivergent people with cancer.

This is a space in our community where you can access peer to peer support and share lived experience, advice and questions to those who understand what it is like to be neurodivergent. If you are neurodivergent and have a cancer experience, this space is for you.

You are welcome to continue using other areas of the community as well, we just ask that only those who identify as having an experience of neurodivergence use the Neurodivergence and Cancer thread.

To kickstart the conversation it would be great to hear your experiences. Perhaps share one or more of the following:

What challenges have you faced in your cancer journey as a neurodivergent person?
What are some of the things that help you cope?
What advice would you give to another neurodivergent person navigating cancer for the first time?

If you would like support in accessing and navigating the online community, our online community team are here to help. We also have help pages with lots of guidance on how to use the community. If you have any questions, please don’t hesitate to get in touch with us in the Online Community Team. You’re welcome to send us an email at community@macmillan.org.uk whenever you need us.

Curlew 4 days ago

Hi, i was referred on 10th July under the 2 week diagnostic NHS pathway and 7 appointments later i.am awaiting full diagnosis even though my ENT consultant has already booked me in for surgery and lymph node removal. I wI’ll also have radioactive iodine treatment to follow. Due to location, there have been 2 attempts to take biopsies and his most recent letter says i should prepare for a third on 5th Oct. He told me that’s its very certainly clear from the location and structure of the growths found that they are malignant because this pattern is never usually benign, But I must now wait for results of cytology and the PET CT scan I had on Tuesday - which will be given to me on 5th Oct, 11 weeks after referral. I am physically feeling exhausted and my neck and clavicle is swollen and uncomfortable. I am struggling with the timescale and enduring uncertainty of both the cytology and the surgery date. - Longpost Lil, aka Curlew, ADHD. x

GrumpySarah 4 days ago in reply to Curlew

It's really hard dealing with physical symptoms alongside the stress of everything. Sorry to hear that you have so many ongoing tests, biopsies etc. waiting for results and things to happen is the hardest I've found. Hope you can take it one day at a time and at each stage, things become a bit clearer and they can make the right decisions for your treatment.