When we talk about cancer, we often talk about the person who has received the diagnosis. We talk about their treatment, appointments, side effects, fears, and the uncertainty about what happens next.
But cancer doesn't only happen to the person who receives the diagnosis. It changes the lives of the people around them too.
For me, watching my dad go through cancer and serious illness has meant becoming much more than a daughter visiting her dad in hospital. I have found myself becoming a carer, an advocate, and, at times, his voice when he has been unable to communicate his needs himself. At the same time, I have been trying to navigate all of this as an autistic person.
There are challenges to being a carer that I don't think are always visible. Hospitals can be overwhelming places. Communication can become more difficult when you are already emotionally overwhelmed, and uncertainty can be particularly difficult when you rely on routine and predictability to make sense of everyday life.
None of these things mean that I care any less. If anything, this experience has made me realise how important it is to recognise that carers have needs too.
We don't stop being neurodivergent because someone we love becomes unwell.
Hospitals can be incredibly sensory environments. When you are sitting beside someone you love for hours, there is almost always something happening around you: other patients talking, staff coming in and out, trolleys moving along corridors, alarms, TV’s, music and other visitors.
As an autistic person, I can reach a point where all of this becomes too much. The difficulty is that when you are in hospital because someone you love is unwell, it can feel as though you don't really have the option to leave. You want to be there. You want to hear what the doctors and nurses have to say and be available if your loved one needs you.
So you stay, even when your own senses are becoming overwhelmed.
Sometimes it has been the things that might seem very small to somebody else that have created the most stress. Even finding somewhere to park could feel overwhelming when I was already trying to manage everything else. Waiting rooms, busy corridors and hospital canteens could all become difficult when I was tired and emotionally overwhelmed.
I have had to learn that taking care of my sensory needs doesn't mean putting my needs before my dad's. It means recognising what I need to be able to keep being there for him.
I started taking my ear defenders and fidget toys into hospital, finding quieter spaces when I could, pacing up and down corridors and sometimes going outside for some fresh air. These things might seem small, but they gave me a chance to regulate and return with a little more capacity.
The focus is understandably on the person who is unwell, but carers are still people with their own sensory, emotional and practical needs. Sometimes looking after yourself in a hospital environment isn't about leaving or taking a break from caring. It is about finding small ways to make it possible to stay.
One of the hardest parts of caring for someone with cancer is not knowing what happens next.
Routine and predictability are important ways that I make sense of the world. I find comfort in knowing what is happening, what I need to prepare for and what to expect. Cancer can take that away. Plans change, appointments move, discharge dates change and someone's health can change unexpectedly.
I experienced this particularly strongly around a meeting about my dad. I had prepared myself for what I thought was going to happen, including who would be there, what I wanted to say and what I needed to ask. On the day, the people I expected could no longer attend and different people arrived instead. The purpose of the meeting also changed. What I had prepared myself for as a discharge meeting became a best interests meeting.
Suddenly, I was in a situation that was very different from the one I had spent time preparing for.
I struggled.
I managed to hold everything together during the meeting. To anyone watching, I might have appeared to be coping. But that didn't mean it was easy. Internally, I was trying to process the unexpected changes, manage my emotions and continue to participate in a situation that was very different from the one I had prepared myself for.
I held it together until the meeting was over.
Then it caught up with me. I had an autistic meltdown and realised just how much the experience had taken out of me.
This also brought up something I have felt guilty about throughout my dad's illness: struggling with my own needs when I am the carer, and he is the person who is unwell. There have been times when I have thought that I shouldn't be struggling because I am not the person with cancer. I have felt guilty for finding things overwhelming or for needing to step away and regulate myself.
I have had to remind myself that needing support does not mean that I am failing as a carer. It isn't my fault that I am autistic, and I don't stop having those needs because someone I love is unwell.
I have also had to recognise that my brain's need for certainty doesn't mean certainty is always possible. No matter how carefully I plan or prepare, there are things I simply cannot control.
Sometimes I have had to learn to sit with not knowing.
I am still learning.
When someone you love is seriously unwell, you often have to become their advocate. You may need to ask questions, understand complicated information, challenge something that doesn't seem right and communicate their needs to professionals.
For me, this has been particularly important because there have been times when my dad hasn't been able to communicate his needs himself. I have had to explain what I have noticed, raise concerns, and make sure that his needs are understood.
But being autistic can make this particularly difficult when you are already overwhelmed.
I can need time to process what someone has said before I know what I think about it or what question I want to ask. In healthcare environments, conversations can often feel rushed. Someone may explain something and immediately expect you to respond but processing information and responding to it are not always the same thing.
When you add fear, exhaustion and emotion to that, communicating your thoughts verbally can become even harder.
This doesn't mean that I don't understand what is happening or that I don't have something important to contribute. Sometimes I simply need a little more time.
The communication doesn't stop when you leave the hospital either. There is often another responsibility waiting when you get home: updating family and friends. After spending hours in hospital, trying to take in information and advocate for my dad, sometimes the last thing I want to do is pick up the phone and explain what has happened.
I have found that using WhatsApp groups and creating template messages can make this easier. It means I don't have to repeat the same information over and over again when I have already reached the end of my capacity.
Being a carer involves a huge amount of communication that other people don't necessarily see. Sometimes the most helpful thing someone can do is simply give you time to listen, think and find the words.
My role in caring for my dad has changed enormously since his diagnosis. I am not simply his daughter who visits him in hospital. I have had to become an advocate for someone who is not always able to communicate what he needs, explain how he is feeling, or recognise when something is changing.
That has meant learning to notice the small things: changes in his alertness, communication, behaviour, movement, eating, drinking or responses to people. I have had to learn what is normal for him and what isn't.
There have been so many times when I have asked myself, "Is this just how Dad is today, or is something changing?”
Sometimes I have noticed that something feels different before I have been able to put it into words. It might mean raising a concern, asking another question or going back to something that didn't quite make sense.
My dad's health is complicated, and there isn't always one simple explanation for what is happening. I have had to learn to bring together information from different people and different parts of his care and look at the whole picture rather than each problem in isolation.
That has meant reading, taking notes, remembering conversations, creating timelines and working out who is responsible for what. It has also meant learning about things I never expected to have to understand.
And when my dad hasn't been able to communicate his own wishes or needs, I have had to try to make sure his voice isn't lost.
That responsibility can feel enormous.
There have been times when I have questioned whether I am asking too many questions or being difficult. But I have come to realise that advocating for someone isn't about being difficult. It is about making sure they are seen as a whole person, noticing when something doesn't seem right and continuing to speak when the person you love cannot speak for themselves.
Being neurodivergent has undoubtedly made some parts of caring more difficult. But it has also shown me that the things that can be challenging in one environment can become strengths in another.
This is the first of a two part blog series exploring what it is like to be an autistic carer, advocate and daughter for someone living with cancer. We are incredibly grateful to the author for her honest and encouraging writing and this blog helps us to understand the unique challenges faced by those affected by cancer and living with neurodivergence.
