Dealing with autism and cancer treatment

Starting chemotherapy 

I started my treatment in January 2023 at Royal Shrewsbury Hospital and had ABVD chemotherapy to start with. One of the side effects was that I was sick a lot. They gave me some tablets, then started delivering it intravenously which helped. I had a scan which showed that the tumour had shrunk from 9cm to 4cm in my chest, but it revealed that I’d developed a tumour in my neck.

They moved me to BEACOPP chemotherapy in March. I wasn’t sick as much, but I had no energy. I was still feeling drained for my birthday in April, so we didn’t do much for it.

I didn’t lose my hair while I was on ABVD chemo; it has just thinned a bit. I shaved my hair off when I was having BEACOPP. It took me a little while to accept it, but once I accepted it, that was it.

I was in hospital a few times with infections. Initially I had to go into A&E and wait. Sitting on hard chairs waiting for 20 odd hours was the last thing I wanted. I just wanted to be in my own bed and sleep. Then a nurse from the hospital gave me a card which I could show to bypass that, so I would be seen more quickly.

On one occasion I’d just got back from the hospital when I started shaking. Mum took me straight back to hospital. It turns out I was in septic shock. I was really poorly. I also fainted once, and my white blood count and potassium were low, and my vitals were nil. I could have died. I spent a week in hospital and had to have six blood transfusions.

How Teenage Cancer Trust’s outreach nurse Becky helped me

When I was diagnosed, I was told that I could go to the Teenage Cancer Trust unit at the Queen Elizabeth Hospital Birmingham. I’d need to go in for treatment once a week, so I decided it was a bit too far to travel. I didn’t want a long drive after treatment while I was feeling sick. I decided to be treated at Royal Shrewsbury Hospital as it was closer to me, but I was told I’d still have support from Teenage Cancer Trust.

I was put in touch with their outreach nurse Becky right at the start of my treatment. I am autistic and don’t like communicating on the phone with people I don’t know, so Becky made sure that she sent me updates by text too. She built up the relationship by coming to visit me in hospital, coming to appointments with me, and by bringing me treats. She also came to visit me at home. I began to feel comfortable around Becky.

I met so many people at the hospital and it was a bit overwhelming. I had information overload. It helped to have Becky there to filter the interactions with people and also keep me up to date with information. She would remind me of my upcoming appointment times and tell me when my scan results were due. She asked me what side effects I was experiencing and gave me advice. I could text her too if I needed anything.

I had to have BEACOPP as an inpatient to start with, which made me quite anxious. Becky looked into this and found out it was because the treatment doesn’t finish until 8pm which is after the day unit closes. The hospital changed it so that people could have BEACOPP in a 4-bed assessment unit which stayed open later and meant people didn’t have to stay in hospital overnight. Things like that make a massive difference, especially for people who are anxious about being in hospital.

She also helped us look into grants and made sure they spoke to mum rather than me so that I wasn’t introduced to another new person. She is also putting mum in touch with someone who can advise me on my education.

How cancer has changed me

Before having cancer, I had a lot of structure in my life due to being autistic. I had a shower every couple of days, and I had pockets of time set out for certain things. That had to go out of the window during my treatment as things change quickly and you can’t plan everything out. I’m now more flexible with things.

I didn’t like speaking to people, so mum would often speak for me. Because I was 18 when I was diagnosed, I had to speak for myself in hospital. To start with it was just giving my name and details when I was asked, but then I became more confident to talk more generally.

My confidence has definitely grown; a year ago I wouldn’t have shared my experience with others, but now I want to help people going through the same thing. I used to stutter, but I don’t stutter as much anymore.

I also decided that I wanted to change my university course to something more freeing, and I also want to do some modelling. I wouldn’t have had the confidence to do that before.

I used to wear my hair really long and I never changed it. It was the same my whole life and it was like a comfort blanket. I was reluctant at first to shave it off, but when I did it felt really liberating. When it grows back, I think I’ll have it in a pixie cut.

My autism has also helped me in different ways too. Once I have come to terms with something, that’s it and I am calm afterwards. I’ve tried to look at the positives throughout.