Almost 990 people in the UK are diagnosed with cancer every day -- that’s almost 360,000 new cases every year. By next year, it’s projected that almost one in two people will be diagnosed with cancer at some point in their lives. Unsurprisingly, the number of people undertaking the role of a carer has been rising concurrently. An under-recognised role, we see that 56% of young adult carers in college or university struggle with their responsibility as both carer and student. The good news is that support is improving – but there is still a long way to go.
Carer /ˈkɛːrə/ A person who cares, unpaid, for a friend or family member who cannot cope without their support (either due to illness, disability, mental health problem, or an addiction).
Anita Sangha is a student at UCL – she founded UCL Cancer Charities Alliance in 2018, after her proposal for a cancer-related society received overwhelming support from over 100 UCL students. Her drive to pursue this idea stemmed from her relatively new role as a carer for her mother, who was diagnosed with cancer just a year before. We turned to Anita to learn a little more about her story.
1. Hi Anita! Tell us a little about yourself. Who are you caring for, and when did this role come about? Hi! So I’m caring for my mother – she has a brain tumour. My responsibilities came about fairly quickly in my first year at UCL at the start of Term Two. I came home from a lecture and my mum sat me and my sister down to tell us the results of the scan she’d had to have due to months of headaches and dizziness. Honestly, it was a hard conversation, but my mum was so strong and brave about it - she told us we’d have a hard year ahead of us (at the time we didn’t know exactly what it was), but we would get through it. She’s a very strong woman.
2. What is it like to be a carer and full-time student at the same time? How have things changed? I’ll be honest – it can be quite challenging. When things are going smoothly, it’s fine – I have time to study and do what I need to do at home, but if things change or if Mum needs something, it can throw a bit of a spanner in the works and it becomes harder to sit down and get reading or coursework done. This was harder to deal with at first but gradually, I’ve been able to balance my studies and home life more (but only in the last few weeks, honestly!). Despite this being a horrible situation to be in, my family and I have grown much closer in the past year. My mother is undoubtedly the most important person in my life so she will always take precedence over anything else, including my studies.
3. Did this have any impact on your social life? Did your friends view or treat you any differently? For me personally, yes – my caring responsibilities have impacted my social life a little as there is a bit more planning and scheduling involved these days. My sisters and I coordinate between us who will be home on what days with our mum - they take a day working from home each, and I have a day free in my timetable so that I can be at home at least one day a week too. We try to plan out each week at a time because our schedules are always different, and sometimes we’ll need to go to hospital appointments with mum too. I did initially lose all drive to speak to people - when we found out I pretty much only spoke to two very good friends until we came back to university this year. However, I don’t see this as a bad thing – I knew what my priorities were at the time so if it meant not seeing friends for a little while so I could be at home and/or catch up on work, then that’s what I needed to do. Now that things have started to settle, there’s slightly more time to be sociable and I find that I have more energy for it now too. I haven’t actually told many people directly that my mum isn’t well – not necessarily out of fear of being treated differently – but more because it can just be a difficult conversation to have sometimes. I’m not someone with a huge social circle anyway, but the small group of friends that I do have are wonderful people. I know I can speak to them about any of this and they’ve been there for me consistently to help out in whatever way they can.
4. How do you stay positive? At the moment, things have thankfully started to settle down; so staying positive is far easier than it was at the start of this whole thing. When we first received the diagnosis, staying positive was challenging because all I wanted to do was to Google everything I could find about cancer – and that obviously made me feel worse. When things are difficult, I think it’s incredibly important to make sure you are looking after yourself before you try to care for someone else. Realistically, this is difficult – there is a tendency to switch off your attention to your own needs sometimes and get really caught up with whatever is going on around you. Sometimes there’s an element of guilt because you feel like you shouldn’t be spending time looking after yourself because the person you care for still needs help or support in some way, and you trick yourself into thinking that you’re fine and don’t need to address your own wellbeing. However, if anyone reading this is going through something similar, I want to stress that it’s okay to take a bit of time for yourself if you can. I’m not saying that we all need to go buy a load of sheet masks and drink herbal teas or anything – just find something that you enjoy and try to schedule it in at some point in your week. Since I’ve started to look after myself more – eating enough, getting enough sleep, making time for things I enjoy, staying positive or even just keeping myself in a better mood – things have been easier, and I have more energy to care for my mum.
Did you know? Carers who took a break of more than a few hours cut their risk of experiencing mental ill-health in half, compared to those who did not.
5. It can be difficult to find the right way to approach friends who are going through similar situations to yours. If someone reading this has just found out that one of their friends is dealing with a difficult diagnosis – either of their own or that of a loved one – what advice do you have in terms of the general do’s and don’ts?
It kind of depends on the person – some people need a lot of time to themselves to process things, but some people may prefer to talk to a friend. The best thing you can do is to just make it clear that your friend can rely on you if they need to. Listen to your friend if they need to talk; don’t try to problem-solve or compare their situation to this other-person-you-know-who-had-something-similar-but-is-totally-fine-now, because each case is different.
6. What kind of support can a carer get from the university? What about the NHS or other organisations?
I’d strongly recommend letting your tutors know that you’ve got extra responsibilities – I was surprised to find how nice and understanding my tutors were and willing to offer help with any of my modules. It’s also useful to let the Student Wellbeing and Support team and your departmental tutor or administration team know so they can help to get any Summary of Reasonable Adjustments (SORAs) in place, which should hopefully help to relieve some of the pressure of your academic workload.
I would also recommend speaking to your GP if you can. They might be able to help with referrals for counselling if you feel like you could use the extra support, or can’t access this through private healthcare plans. You can also call the Samaritans Charity or Care First (for UCL students) if you need to speak to someone. The latter has connections with UCL and you can receive counselling sessions over the phone once you have a quick consultation.
It might also help to speak to people going through something similar to you. There are a number of Facebook groups that might be worth joining – for example, I’m in a Facebook group for carers of people with brain tumours run by the Brain Tumour Charity. Many different charities will have groups for different types of illnesses or conditions, so it’s just a case of finding the right one for you. There is a small Facebook group for student carers at UCL, and the UCL Cancer Charity Alliance Society (CCA) is a great resource if you’d like to meet or speak with student carers and those affected by cancer. CCA is relatively new but at the moment we organise lectures educating people about different types of cancer and treatment, which can be helpful for people who want to learn more about cancer. We’ll be aiming to organise more social events and opportunities for students to get involved too in the future.
Thank you for doing this interview with us, Anita! Your story is highly encouraging and we hope this inspires others who may be facing similar challenges at university.
For more information on support services, UCL CCA has kindly provided a list of welfare resources here.
By Justina Tai