Interview: Lucy Collins on Lymphoma, Living with Cancer and Documenting her Journey

Lucy was diagnosed with Stage 3 Hodgkin’s Lymphoma in 2018. Having just reached her four years in remission, Lucy has decided to share her story to help spread awareness on life after cancer.

Do you mind telling us a bit about yourself?

I'm Lucy, I'm 23 now, and I got diagnosed with Hodgkin's lymphoma in 2018, and so I'm coming up to my for four years in remission.

So what actually is Hodgkin’s lymphoma?

It’s a type of blood cancer. So, you have Leukaemia, Hodgkins, and then non-Hodgkins lymphoma, which is what I had. It was stage three, so it was in my neck, my chest and my spleen.

Do you know how far along they caught it?

I think initially it starts in your lymph nodes, so they check your neck, your armpits, and your groin. Because I was stage three I was late along but I just kind of noticed that initially, it was because my necklaces were hanging differently on my chest like they weren’t centred. And I thought that was weird. Then I did all the blood tests and further sort of checks and then ended up with the diagnosis, so I’m not necessarily sure how other people have found out in different stages, but I think commonly it's like your neck, your armpits, that sort of thing.

Alongside the symptoms you had, what other symptoms would you advise people to look out for?

So I think with me I found it a bit tricky because obviously my neck was enlarged so it wasn't really a lump. I had just come back from skiing and was trying to go to the gym and be healthy again, and I have eczema so I'm quite prone to itchy skin. It was also one of the hottest summers, so I think it was hard. With blood cancer your symptoms can be like the flu so I think you need to be quite in tune with your body and really notice. Once you know more about cancer they tell you all these things about the symptoms.

Image Credit: Lucy Collins

What would you suggest people do if they’re worried that they have some form of blood cancer?

I mean everybody says don't Google anything. You're gonna panic and you're gonna stress and that big cancer word is so scary. Just try and breathe and take a minute. If you're going to Google things, rationalise it, listen to your doctors, don't necessarily listen to what Google says or what other people say. You have a whole bunch of people being like oh I know someone with cancer, you should try this herbal remedy that cures your cancer… I think just take a minute. Listen to the professionals - they do this all the time, there's going to be a routine with it.

Were you diagnosed at your GP or had it escalated to hospital at that point?

I notice my neck was enlarged and so I went to the GP and they did a whole load of blood tests, and my white blood cell was really high. I was just putting it down to other things, and so I was on antibiotics for about a month like on and off different courses. Then I had another blood test and clearly my bloods were just getting worse and worse and so they literally called me in the day after. My mum used to be a nurse and she was like I really think I want to come into the room with you. So the doctor explained everything and said ‘we think we think you might have lymphoma’ and I swear to god I’d never even heard of the word before – I did not know what it was. I literally turned around her and thought oh okay like well should probably ask ‘is that cancerous?’. She was probably thinking like god you have no idea.

I remember driving back with my mum and I was like ‘oh I know it sounds stupid but I'm just really glad that I don’t have to be on antibiotics now. That was surreal.

I then got referred to the doctor and there was a huge waiting so I end up going privately and I saw someone within a week. Again I had more blood tests and he actually diagnosed with me on a Friday and then I started chemo on the following Tuesday.

What do you wish people knew about cancer?

I was an outpatient so I had chemo for a whole day like every other which really doesn't sound a lot, and so I think my point I wanna make is that cancer isn't just being in a bed or being in hospital all the time. People live with cancer, people can go to work. People need to realise that you can be out every single day just living with cancer and if you’re going to bring up the topic of cancer then you need to be sensitive to the people around you.

Image Credit: Lucy Collins

When you were looking at statistics and what chemo does to you, what was going through your head?

I think I was very naive and very ignorant to it all and there wasn't necessarily a time that I thought I was gonna die or anything. My doctors from the get-go said ‘we're gonna look after you; you’re going to be okay,’ so it was kind of a mixture. But then you have such extreme days and I remember my mum booked a spa day for us and it was really nice but I hadn't really felt it [the consciousness of having cancer] until there was a form that you had to fill in. It asks about your medical history like have you had cancer or do you have cancer. I think at that that moment I realised I had to tick a box.

I think everything happens so quickly you don't really have time to process it and that's why it's such a big thing. Life after cancer [is massive] when you haven't got cheque ups frequently and you're not surrounded by doctors so then when you're just out by yourself you like oh God like now I'm starting to process what's going on.

think I was very independent and that's probably something that if I went back I wish that I'd relied on people a bit more because I was like oh no I'm fine, I'm going to work,k I'm going to do this stuff, and everyone said right you need to chill.

Life after cancer is crazy. I remember I finished my treatment and had one year at uni which was then interrupted by covid. So I couldn’t have face-to-face check-ups. I was getting letters, I was getting phone calls, I was getting texts saying ‘you’re extremely clinically vulnerable, you should stay in your room and you can open a window if you want too.’

My doctor said we’d have a phone appointment and all of a sudden he was like ‘how do you feel?’ and I just said ‘I think I feel fine?’ and so he asked have I noticed any lumps anywhere and was running me through the symptoms. I was thinking that this didn’t feel like a doctor’s check-up, I was being the doctor, effectively. I didn’t feel reassured, so I convinced him to let me come in.

Do you have any funny experiences with non-chemo medication?

You know it’s so sad losing your hair. That was the one thing that my doctor told me when he diagnosed me. He said, ‘oh you will lose your hair’ and that was when I felt the pit of my stomach. My hair did fall out, and I did lose it, but I just decided to constantly shave it off because it was really thin and didn’t look nice anyway. It became a running joke that my bestmate Hannah would buzz cut my hair every couple of months and she did a mohican at one point. My brother tried to shave one of those cool S things into the back of my head once, and the razor broke, so it looked a bit inappropriate. That was just comical, that was funny and I think because it’s such a sad part of the experience that if you can actually make a joke out of it then you can have a bit of fun.

You had your treatment before you came to uni, how did it feel coming to uni and telling all these new people that you’ve had cancer? How did you go about telling people?

I think I sort of struggled because there was a part of me that wanted to tell everyone because it was such a big part of my life. Everyone was asking so what did you do last year [on your gap year] and I’d be like ‘ah well I had cancer, let’s talk about it’ and I’d say it quite naturally. Some people would be like ‘oh my god you’re amazing, I can’t believe it, you look so great’ and get all gushy and become your best friend for the night.

Do you have any tips for people regarding mental health and looking after themselves throughout treatment?

It is the most isolating experience. Anyone whose been diagnosed with cancer will say that. I think it’s trying to figure out a way to process it yourself. Because part of me was so naïve and ignorant to it and I didn’t believe it, I definitely had days where I was crying in my bed by myself and trying to process it. I made an Instagram, and that helped me so much. I kept it a massive secret, I didn’t let any of my friends follow it and didn’t tell anyone about it. It was purely just my outlet. I would post things to get it out of my head.

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