Kiya's story

Kiya Kanani was diagnosed with stage four Hodgkin lymphoma in 2021 when aged 15. She shares her story and tells us why raising awareness of cancer in young people is so important to her.

I first noticed a lump on my neck in November 2020. It just grew and grew, and I knew I needed to get it checked. However, I was told on multiple occasions it was just an infection and was given antibiotics to treat it, but it wasn’t going down. The doctors were adamant it was an infection, but come March 2021, I was sent to Nottingham to see an ear, nose and throat specialist and it was him who brought up it could be some kind of cancer.

This hit me hard, and I realised there was something actually wrong with me. As soon as I heard those words, it was like, ‘oh no, it’s got to be that, it’s the only thing it could be’. It had taken them so long to get to the bottom of things, that I thought it must be cancer. After more tests and two biopsies – the first of which came back inconclusive - I was eventually diagnosed with stage four Hodgkin lymphoma on 23 April 2021.

I had so many symptoms, for such a long time, but we just didn’t know that’s what they were. When putting them all together, it was kind of obvious - I never used to be able to run very far, I couldn’t speed walk anywhere.

Mentally, I’d been preparing for this moment for weeks, so that as soon as I got the news, I could just focus on what needed to happen next for me to get through it. After waiting so long for a diagnosis, things moved really quickly from there. A few days later I had my port-a-cath line put in, ready for six months of intensive and gruelling chemotherapy.

The impact of my diagnosis

When I was diagnosed, I was studying for my GCSE’s and already trying to cope with the uncertainties of the COVID-19 pandemic. We were just coming out of lockdown, but as everyone was going back to school, celebrating the last couple of months to go, I became even more isolated.

My schoolwork was impacted as it was impossible for me to attend because of how I was feeling. I didn’t want to leave the house, either, as I had to be careful not to pick up an infection, with the treatment making me immunocompromised. This gave me extra worry – not only would an infection be really dangerous, but I’d have to go and stay in hospital, and this was something I really wanted to prevent.

Throughout lockdown, I didn’t see anyone other than my immediate family, and just spoke to my friends and family on the phone. And then, when I should have been celebrating like the rest of the country, I still couldn’t see anyone. Instead, I was navigating this hugely scary, uncertain and traumatic time more isolated than ever. That was so difficult.

Side effects of my treatment

Cancer treatment often brings painful side effects and for me it was no different. I was lucky in the respect that I didn’t feel nauseous or sick, but I did suffer from severe stomach cramps, which were horrendous, stabbing pains. I couldn’t move, couldn’t lie down, couldn’t stand up, it was just so uncomfortable to do anything. I also lost my hair and ended up having to shave it off. This also really hurt - I don’t think people realise that when you lose your hair, it’s physically painful as well as well as being really hard mentally, too.

Finishing my treatment

To those who haven’t been through cancer as a young person, it may sound like a strange thing to say, but finishing treatment felt bittersweet. On the one hand, I was obviously so happy my cancer had gone, and I could get back to ‘normal’, whatever that is. I was so relieved; it was such a great feeling. But the nurses and doctors were so lovely on the ward I was on, and you become so close with them. You’ve spent half the year, day in day out with them, so it feels quite strange and sad when you lose that.

I lost my hair and ended up having to shave it off. This also really hurt - I don’t think people realise that when you lose your hair, it’s physically painful as well as well as being really hard mentally, too.

I also don’t think people realise just how much you’re left to deal with after this really invasive treatment. I still have to attend quarterly check-ups, for heart scans, X-rays, CT scans, anything to check my health is okay, so I still have a lot of appointments to attend.

There’s obviously a lot of problems that comes from chemo and all the other therapies, that patients will struggle with all the way through their lives. I’ve struggled a lot with joint pains, and the reality of having cancer has really hit hard. During treatment, I was sort of in survival mode, doing what I could to get through it. But it’s afterwards when everything hits you, I think. I saw some terrible things on the ward, it’s a very traumatic experience. To just then expect to go back to how things were before, it’s impossible.

Raising awareness of signs and symptoms

Since my diagnosis, I’ve been hugely passionate about raising awareness of cancer in young people. It’s so needed and any way we can find to talk about it or promote it, the better. I had so many symptoms, for such a long time, but we just didn’t know that’s what they were. When putting them all together, it was kind of obvious - I never used to be able to run very far, I couldn’t speed walk anywhere.

I’d be out of breath. But I was never even checked for asthma or anything. Instead, I was told to improve my fitness! I had a sprained ankle for many years, but this was never investigated further. I was turned away and not taken seriously so many times. I got to stage four, and if I didn’t feel that lump, it could have been really, really bad.

I didn’t know all the symptoms but if I was able to log it all, I could have looked back and researched them and what they could mean. I would have been diagnosed a lot quicker.

So, I think if people have that education and awareness, then they know these other symptoms could be something. They can put it together and say to the doctors, ‘these are what I’ve had over the years, can you not test for something else’. Then, we can diagnose people sooner.

Having cancer as a teen

As a teenager, you’re just starting to try and stand on your own two feet, you want to look after yourself. But I lost that. I had my mum, my dad and my younger brothers having to be on hand to look after me. Getting my medication, getting my food, getting anything that I was craving because you’ve got to eat anything you can when you’re feeling hungry.

This is a big thing. You feel like a burden and can’t look after yourself when you should be starting to do that. It’s a loss of independence, when you’re just starting to really find your way in the world.

It’s also a time of great uncertainty and anxiety, and a very scary thing knowing that what you’re going through in the present, could affect you for the rest of your life.

What should people do if they are worried about their health?

I’d advise people to log their symptoms. Now, if I’ve got any concerns, I write it down as I know I might forget it in a couple of hours, or in a couple of weeks when something else might crop up. I didn’t know all the symptoms but if I was able to log it all, I could have looked back and researched them and what they could mean. I would have been diagnosed a lot quicker.

Your health should be your number one priority. Without health, you’re nothing. So, if you’re worried, you should go and get it checked and if you’re still not happy with the doctors there should be a push of ‘can you check this for me?’ or ‘can you make sure my infection marker’s not high?’ Just ask them to check for anything they possibly can and really advocate for yourself.

My advice to other young cancer patients

Getting in contact with other young people who are going through treatment, or who have had cancer, really helped me and I’d recommend doing the same. In fact, I found talking in general really helped me, so don’t be afraid to do so. It really helps me, and helps others understand a little better. It’s cathartic - you’ll get different things out of yourself while talking to people and realise what happened and what you’d been through, how you felt. It helps you reflect and while, no, it doesn’t help you get over it, it does help you come to terms with it, almost.

I’d also say it’s really important to try and keep positive and to distract yourself, where possible. It is difficult to just push how you’re feeling out the way but try to find things that make you happy, even if it’s just the little things. It’s easier said than done, but your cancer will consume your life if you think about it too much.

Follow Kiya on Instagram: @kiyascause