Neurodivergence and Cancer

Mine would have been the last option; something else - which was doing my own research about the things I wasn't being told, that would effect me and my other health conditions. And I learnt a lot. 

Thanks for sharing Haseya . What were some of the things that you learnt?

Hey everyone

If you are neurodivergent and have experience of navigating cancer, what advice would you give to someone facing it for the first time?

Perhaps you've found helpful ways to prepare for appointments, communicate your needs to healthcare professionals, manage sensory challenges, organise information, or cope with treatment and recovery. Your experiences could make a real difference to someone who is feeling unsure about what lies ahead.

We'd love to hear your thoughts, tips, and words of encouragement.

I had a cancerous lump cut out of my lung in april, got 2 go fr xrays n ct scans every 6 months now 2 keep an eye on it incase it comes back, the care i had n the after care im getting now i cant fault

Thanks for sharing Chez66 . That is really positive to hear about your care, although it must have been a difficult time for you.

Is there any advice you would give to someone who is neurodivergent and navigating cancer for the first time?

I am full of anxiety and fear about a return even though I was assured that it was caught on time and it was In Situ and had not spread at all. In fact I had “Day Surgery” and went home same day. Then I had several sessions of Radiotherapy several weeks later. I am now waiting for the first post Op Mammogram and then yearly thereafter for 5 years? But I am very apprehensive looking at my breast in case I find something else! And yet normally I am that Tough old lady who is cheering others up and giving them the Chin Up Pep Talk etc

So, I have ER/PR+ IDC. I'm AuDHD, whilst also having Fibromyalgia and ME/CFS. The day I found out my results I was told I had to come off HRT, have surgery, lymph nodes removed and checked, and then radiotherapy.
I'm 57 and wasn't diagnosed Autistic until I was almost 49, and ADHD 3 years ago. I've had a very long 'lived' life of no support and having to figure things out on my own. So needless to say I take no one at their word and have to research everything for myself. Having said that, nothing is on my radar until it's on my radar, so not only did I discover how hormones basically run every aspect of our functionality, having Fibro and MECFS means cognitively and physically, stopping hormones can be catastrophic. 
If you are pre menopause age you would automatically be referred to a menopause specialist, but if you're 50 and above you aren't, but it is your absolute right. I'm not automatically cynical, but I never assume someone has remotely factored in my neurodivergence when they are making decisions about my health, because most don't.

My position right now, I'm waiting for the specialist appointment, I'll be pushing to stay on HRT, I'm not having treatment, and either way, whether they 'allow' me to stay on HRT or not, the only treatment I will have is palliative radiotherapy when I need it. My quality of life is far more important than quantity.

Hi, I'm autistic and had bowel cancer 3 years ago,  still receiving monitoring and support. I wasn't able to benefit from this advice myself as I was diagnosed late and had to be admitted for emergency surgery, as my bowel was about to block.

1. Use the NHS digital Reasonable Adjustments Flags system.  Ask your GP to enter the flags you need on to the system.  Be specific. I have hyperacusis, found the noise levels on the surgery recovery ward unbearable and had to discharge myself,  risking an unsafe recovery. You can ask for a quiet room or bay. Or take noise cancelling headphones , which I didn't have at the time. 

2. If you have sufficient time before admission for treatment,  you can ask for a Needs Assessment to be carried out, which in my case would have been carried out by a colo-rectal nurse/navigator, had I not been an emergency case. 

3. If you can, involve an advocate who understands your needs. You cannot self advocate when you are very seriously ill or have just had surgery. 

4. Find out if the hospital staff have had neurodiversity awareness training,  in our case Oliver McGowan training,  which was delivered some time after my experience. If they are not trained,  chances are they will not fully understand your needs,  even if you communicate them. If they have not been trained,  contact your MP.

What helped me most was support from family,  friends and carers.

A friend and a near relative both explained what to expect when you have chemo,  before I started treatment,  so I was mentally and practically prepared.

My elderly father took me to every appointment and supported me, even though he's deaf and can't hear well! My sister visited every Saturday with a picnic lunch, wore a mask and used hand sanitiser during my chemo treatment so I wasn't completely isolated. A friend from Southport sent me a book of poems and messaged me regularly with her news and encouragement .

We have a team of colo-rectal nurses who help us navigate our treatment pathways and provide a support group and they have been wonderful. 

When my treatment finished, I acted as a kind of chemo support buddy for a lady in Southport (my friend's friend ) using Facebook and Messenger to kind of Pay It Forward,  as I really valued the support I had.