Conversations with… Raven Swaine

I met Raven when I was 18 through a friend who had invited me out with her group of friends. I remember feeling absolutely terrified to walk into a strangers house and meet an already established friendship group. Nobody wants to be the new girl, but there I was, the only one there in jeans, wearing a top that I had borrowed from my friend and shaking with nerves.

When I first met Raven, I remember thinking ‘how I meant to be in photos with her?!’ She was (and still is) completely stunning. She had the most incredible long hair, a sense of style you could only dream of having and was always smiling or laughing at something. She was completing a degree in Maths and I found out that night that she was the most incredible dancer too. It was like all of the attributes you could have wished for, Raven had – but she was one of the most down to earth, friendly people I had ever met. Being the newbie was scary, but Raven made me feel so incredibly welcome that I didn’t feel like the new girl for long. I liked her for that and admired her from the start.

But we can’t be blissful eighteen year old students going out every weekend forever. Sometimes life happens in a way that knocks the air from your lungs a little and makes you realise how lucky we are to be here.

Raven was diagnosed with stage 2 Hodgkin’s Lymphoma on 6th December 2017. She was 24 years old.

From an outsiders perspective it was such a shock, partly because anytime anyone is diagnosed with an illness like cancer it is a shock, but mostly because Raven was so young and so healthy. Out of everyone, she was arguably the one who took the most care of herself. I guess that shows the lack of discrimination an illness like cancer shows.

This interview made me really proud to know Raven, not just because of what she has survived but more because of who she is as a person. Her sunny outlook, her determination and the strength in her sense of self despite any obstacles sent her way is a force to be reckoned with. I knew from the moment I met her that she was someone to be admired – I know that by the end of this interview you will agree that she is too.

Can you describe how your diagnosis with Hodgkin’s Lymphoma came about?

I was sat at my desk at work one day and just happened to rest my hand on my neck and noticed a sizeable lump that was quite hard. I even said to people I sat near ‘I’ve got this weird lump that’s really cringe! What do you think that is?!’. I didn’t feel unwell in the slightest but I’ve always been quite aware of my body, with being a dancer it’s important to know when something isn’t right, so I went to the doctors soon after. The first doctor said it was probably nothing to worry about and that it was likely just swollen if I was run down because I was really busy at the time doing lots of shows, so I asked how long I should wait for it to go down. He said come back in a month or so if it is still there or changes size.

After a couple of weeks I noticed it seemed to have got longer and I could see it sticking out when I looked in the mirror, so I went back and the second doctor referred me immediately. She told me then that she was referring it under cancerous but just as a precaution and so that I would get a hospital appointment within 2 weeks.

I then went for various scans and tests. I went on my own to all of these appointments just because it seemed like not a big deal and an inconvenience for anyone else to travel and wait with me. The doctor was definitely giving hints throughout. When he sent me off to get a biopsy he told the nurse ‘to make sure I came back after the biopsy as he hadn’t told me yet’. When I got back he said ‘we won’t know until we see the results but the worry is that it’s lymphoma’. I had never even heard of it!

Although I wasn’t officially told at that point, that’s when I realised it WAS cancer, but when I relayed the appointment to other people they were convinced it wasn’t and I had just been given the worst case scenario. I didn’t tell my mum anything except that I had been for some tests.

When I was waiting for the results, there was a bit of a mishap with the appointments which meant I knew the diagnosis for definite before I was told. I knew the date I was going back for the results but my mum got a phone call from the haematology department to say an appointment at a later date that I didn’t even know about had been rearranged and it was really important that I didn’t miss it. I text my nurse whose number I had been given to check if my results appointment had been changed or if this was something separate. She confirmed that my results appointment was still the same and asked if I was coming alone. When I said I was, she recommended that I take someone with me in case there was a lot of information to take in. I called my boyfriend, Joe, and just remember saying ‘please can you come to my results appointment, it’s not going to be good news’.

I briefed Joe not to ask anything when we got there. I told him I knew what they were going to say and I just wanted to listen and didn’t need any questions asking on my behalf. As soon as we went into the room it was clear – there was me and Joe, the doctor who had done my tests, the nurse and a Macmillan nurse. They gave me my diagnosis and I just sat there and smiled and said ‘I know, it’s OK’. I remember the Macmillan nurse saying ‘you seem to have taken this really well, are you sure you don’t want to have a chat alone?’ But I didn’t need it – I just needed to tell my mum.

It was strange that when I was telling anyone else I didn’t understand the gravity of the situation. It just felt like I was telling them I had a cold. I text some of my close friends who knew about the appointment to say that it was lymphoma. It still didn’t feel like it was anything to be upset about. But I was terrified to tell my mum, for her, not for me. I just knew how hard it would be for her and that she would break down. I told her over the phone straight away after the appointment and I just remember the terror in her voice when her brain darted to the worst conclusion. I just kept telling her ‘I know I’m crying but it’s only because you are! I’m really fine, it’s really ok!’.

I’ll be honest and say that after that point is really a bit of a blur. I had a dance show the next day and spent the whole evening in a daze. I hadn’t told my students yet and it wasn’t the appropriate time to do so. I spoke to my work (who were absolutely amazing the whole time), and then just spent time at appointment after appointment at various hospitals.

I got my hair cut into a long bob in December. I had really long hair for so long that getting a bob was a big deal for me, but I knew it was all going to go anyway. I absolutely loved the bob and after that, I wasn’t really concerned about losing my hair. I had some scarves to wrap, and I was provided with an AMAZING wig by the Little Princess Trust.

I was living in Leeds but had been going to appointments in Bradford. My dad did a lot of research and we decided that St James’s University Hospital in Leeds was definitely the best option for my treatment as it was very highly rated for cancer treatments, was much closer and had a specialist teenage and young adult ward for cancer patients. On my first appointment at St James’s, they took me up to visit the ward and I met a few other cancer patients but I still didn’t imagine I was now in that bracket. I just didn’t feel poorly or like it was a big deal!

I also had to go for a fertility appointment in Seacroft, as the chemotherapy can sometimes affect fertility. I was still going to appointments by myself but I wish I hadn’t to that one. That was the first time I came away and I didn’t remember or understand any of what the doctor had said to me! I just knew that there were different options, with some delaying the treatment and others not so much. Although Hodgkin’s Lymphoma is described by doctors as ‘very treatable’ so there was never any doubt in my mind that I would be ok, it’s also ‘very aggressive and fast growing’ so we decided to go for the option that meant we could start the chemo as soon as possible, which was to just have a monthly injection which sent my body into a fake menopause to protect any eggs.

I had my first chemo on the first Friday of January, and then every 2 weeks from then for 6 months.

My first chemo was unremarkable. I went in, got hooked up to the cannula, had the drugs and couldn’t believe it was that easy. My arm felt a bit cold as the drugs went in but that was all! The room was great, there were games, activities and a TV. I felt a bit rough the couple of days after but went back to work early the next week. I even went to a dance class in January!

Things gradually got more serious though. About halfway through I started to get really sick. A lot of it was probably mental. As soon as I felt the cold drugs in my arm I would start being sick. The first time that happened they injected me with anti-sickness, but it didn’t really help. It just made me so so tired and heavy. I got home and slept pretty much until Monday morning. The weekend after chemo for me was a write off! I could barely manage the odd ginger biscuit for the whole weekend and anything I ate on the Friday was pointless as it was back up within the hour. I couldn’t go to the toilet for days, I think the record was a week, and when I eventually did it was excruciating pain. I sat there for hours having panic attacks and crying. I would feel so anxious just being in the hospital, even if it was just for my checkup that I had to have a few days before the chemo to make sure all was ok. I used to go to those on my own and one day stood outside the hospital crying because I didn’t dare go in.

I started become scared of needles as my veins got thinner meaning it was harder to take blood. With the cancer being aggressive, the drugs are equally aggressive and really are almost corrosive to your veins. Even though my treatments were 2 weeks apart, having my chemo in the same arm twice caused real problems. I learnt this early on as I got home and my arm was just in so much pain inside. I couldn’t sleep for days! About halfway through I decided it was better to get a PICC line. They basically insert a tube in your arm and they thread it right up towards your heart, and it has a sort of like plug on the end where they can put things like the drugs in and take blood out. It made the chemo much faster but I didn’t get one straight away as they can get infected or blocked, or can cause other complications. You also can’t get it wet so I had to put cling film around the top of my arm every time I got a shower and hold it to the side. You also have to be careful with how much you use that arm, such as no repeated movements which wasn’t ideal for dancing, and no heavy lifting.

On top of all that I was experiencing fake menopause symptoms so I was having hot flushes multiple times through the day and waking me up in the night.

I was told after my 2 month scan that I was in remission. I knew it would be fine all along, it just took a lot more work than I anticipated to get to the end!

It sounds like you handled everything that your diagnosis threw at you so well and with a smile, even something as difficult as having to tell others that you were ill. Did having cancer change your relationships with those around you?

Cancer improved so many of my relationships. I was such a busy person that my life before revolved around work and dancing and I didn’t end up having much free time to spend with friends and family. Although I kept working throughout treatment, I had a LOT of spare time. So many people were lovely and reached out to me and we went for coffee or lunch. Every single person was appreciated. I liked talking about cancer but I didn’t want to be the one to bring it up, like I was always going on about myself and talking about cancer. I realised how amazing my friends are.

I realised how amazing my mum is. It was just as difficult for her as for me, probably more. Every other Friday she took me for my treatment, she saw me getting more and more ill and losing my hair, and even though it broke her heart she stayed positive. She made me whatever random food I felt like I could eat, and let me stay in bed all day.

I realised how lucky I am to have Joe. He just knew what I needed. He would leave me if I needed leaving or motivate me to get up if that’s what I needed. He would clear up my sick when I didn’t make it inside in time or take away my bowls when I couldn’t move from bed. He loved me even though I was bald and not the person he signed up for! We’d only been living together for 2 months when I got diagnosed and everything changed. Everyday I am so grateful for everything he did, I couldn’t have done it without him or my mum.

People are just surprising and wonderful. And they are so important in life.

You sound like you are surrounded by the most incredible people who really knew how to support you through this. Another relationship that cancer impacts is the one with yourself. How would you say your relationship with yourself and your body changed during this time?

I lost a LOT of confidence. I know looks aren’t everything but I just looked so different. It wasn’t that I minded looking different as I knew how amazing my body was for getting through it, it was just that I didn’t see why anyone would bother to notice me. Anytime I went out somewhere I just imagined I was invisible.

But I appreciated my good days so much. When I was so busy before, mentally I was very tired and often quite sad. The days after treatment were so boring and uncomfortable, but once I came around I just loved life. I liked going to work, seeing my colleagues and doing something useful and normal. I liked having days out and being around people. I just felt so happy to be enjoying life!

For me, I wasn’t aware of your diagnosis until you were quite a way into your treatment. Was there a reason you decide to keep this part of your life quite private and not really on social media?

I didn’t really know what to share or what not to share. I’m quite a private person and whilst I wanted people to know I didn’t know how to share it. In the end I posted a few pictures once I’d shaved my hair, mainly so that if I bumped into someone they wouldn’t be alarmed at how different I looked.

I also really struggled how to approach it without people thinking I wanted sympathy or that I was feeling sorry for myself. Having cancer was hard and I had bad days but overall I didn’t feel that sad about it. I wanted to share how I felt but I didn’t want anyone to think I was being fake or annoying so in the end I kept it very minimal. I was always aware of the fact that yes I had cancer, but in the grand scheme of things it wasn’t a big deal. I knew it was treatable and that I would get better, not everyone has that luxury.

I did more of an official post once I had finished treatment and we signed up for the York 10k to raise money for the teenage cancer trust. I felt more comfortable doing it that way so I could share my story and encourage people to donate without it being all about me.

I think everyone deals with big things like this differently and focusing on yourself and those around you clearly worked for you. Is there anything else that you did that you felt really helped you overcome this?

I honestly think I only managed it because of my outlook beforehand. I didn’t choose how to handle it, it was just like survival mode. I knew I didn’t have a choice so I just cracked on and got on with it and stayed as positive as I could. Also as mentioned above, definitely my mum and Joe, and my other wonderful friends who looked after me.

I also think keeping some level of normality helped. I didn’t have the energy to dance but I had energy to do shorter days at work and I loved that I was still able to do that.

You mention dance frequently and I know it is a huge part of your life and your identity. I love seeing the videos you share of your routines! How did dance help to rehabilitate you?

When I first went back it was so difficult. My body was tired and stiff, I feared that I might pass out if I did too much, and my brain struggled to pick up the steps. All the people I’d previously danced with just seemed leagues ahead of where I was and I had absolutely no confidence. I kept working at it. I absolutely love dancing and I have worked at it all my life to get to a reasonable standard. I changed my relationship with dancing and went back to the roots of dancing for me and the fact that I just love it.

Dancing can become a very audience based and competitive activity, as you always want people to enjoy what you’re doing and keep pushing yourself to be the best you can. I had to remind myself regularly not to worry what anyone thought and just keep pushing. But thoughts still crept in that people might be looking at me and thinking how much I’d lost it or on the other hand I worried that people might feel sorry for me because I had cancer. I just wanted to be back where I was before!
It took a lot of work, but I gave myself a goal. I knew that I’d been out for 6 months so it would take me probably double that time to get back to where I was, and that’s what I was working for. And I’m not even ashamed to say I am so proud of myself. Less than a year after my last treatment I am happy with where I am. I have trained and trained and people who don’t even know that I had cancer recognise me as a dancer.

As someone who knows nothing about dancing my words might not mean much but you really are incredible at it and I’m so happy that you were able to get back to a place where you feel confident with your skills. It definitely is something to be proud of yourself for! Has having cancer changed your approach to life or do you still look at everything with the same positivity and determination as before?

Cancer definitely made me reassess my priorities in life. I am back to being very busy and doing a lot, but I also take time for me. If I’m tired one day, I won’t go to class in the evening. Dancers often forget how important it is to rest, but I tell anyone I teach to always look after their bodies and their minds first. I also try my very best to put people first. To remember how important relationships are and spending time with family and friends.

One major thing I also learnt is that it’s ok to ask. I’m so bad with words and often struggle for the right thing to say, but what I have learnt is that if someone is going through something, all you can do is ask and be there. It doesn’t really matter what you say – it’s the thought that counts! They might not want to talk about it and might tell you that, but better to ask and be told no than to not ask at all.

For such an incredibly tough experience, your attitude to it has always been an admirable one. Are there any positives that you feel you have learned or gained from having cancer?

I just know that we all go through something bad in our lives and I am lucky to have gone through it at a point in my life where I was so ready to be able to deal with it and be supported. I also firmly think everything happens for a reason. I definitely needed something to remind me of the true important things in life before I worked my life away and lost my friends. I am grateful that it happened soon enough for me to be able to do something about it.

If you could describe your outlook on life, what would it be?

That is a really difficult one! I just know I am so grateful for life!!!

5 thoughts on “Conversations with… Raven Swaine

  1. This is an amazing interview. Some really good questions were asked. Raven is an inspiring individual. As she said, you don’t make a decision to react the way you do, you simply go into survival mode. I can completely identify with so much of what she says. Beautiful to see she has a network of caring, supportive family & friends. ☺️

    1. She really is isn’t she! Her outlook about everything was so good – I’m not sure I could have taken it as well as she did, but she is that good of a person. I’ll be sure to pass your kind words on – thank you x

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