As the face of Stand Up To Cancer Scotland, Jordan advocates for awareness around the highs and lows of a young cancer survivor. Jordan shares her journey on her Instagram in which she posts regular updates regarding appointments, charity events and inspirational quotes to support those going through it. She is incredibly insightful, and her honesty about treatment and life after cancer is resourceful for many.
Hi Jordan! Do you mind telling us a bit about yourself?
I was diagnosed with Stage 3b Papillary Thyroid Cancer last May (2021) when I was 21! It took me around 2-3 years to be diagnosed because they never added up my symptoms so assumed everything was fine. I had a lump in my neck for a good 2-3 years, and they never took things seriously until I saw a GP who actually had cancer himself, previously, a few years before that. He took me seriously and put me forward for tests in the hospital so it was a long process. As much as my journey is around a year and a half, it’s really before that.
Was your lump in your throat the only symptom you had, or did it [the cancer] present itself in other ways?
So my thyroid looked fine but the lump was in my neck quite high up on the right side. So it had already spread to the lymph nodes in my neck and had for years. Until we took my thyroid out, it obviously wasn’t fine. From an ultrasound and bloods, my thyroid seemed fine.
What was the surgery like when you had to have it removed?
I was put to sleep. It was a six-hour surgery. It was kind of traumatising. I was told it would be around 4-5 hours of surgery. I don’t know how but I wasn’t nervous! I was probably totally dazed. They never gave me any pre-meds to chill me out. I had no cannula in my hand or anything, and I walked into the theatre room. Seen everyone in scrubs and I hopped on the bed and then just got put to sleep; it was weird. They took out my whole thyroid and 73 lymph nodes in the middle of my neck. I didn’t even know you have like 300 or something lymph nodes in your neck.
What did you think when you learnt about statistics?
I’ve obviously read statistics before about 30-40 year olds, and I was shocked because that’s actually quite young. I know cancers have different age brackets that it is more common. However, reading about it and knowing what it is to do with hormones, it does make sense why it’s those ages. I think as well you associate cancer to be more common in the older generation than it is in any other generation but thyroid cancer is more common in the middle age bracket.
Last night when I read that statistic [Approximately 1.2% of people will be diagnosed with Thyroid cancer] ] I was like that’s not a lot at all. That’s a very very low percentage and I am one of those people. I know a lot of those people in the thyroid cancer community as well. It’s quite shocking. Social media makes you aware of those people more.
How much would you say that social media has play a part in your journey? Obviously you have your Instagram (@jordansthyroidcancerjourney).
Massive. It’s something I actually speak quite a lot about and I have done recently. It’s weird as well because when I was diagnosed, I just knew that I was going to put it on social media. Younger people are more used to social media and use it a lot more. When I started up my Instagram, it almost just felt right to share it. It helped me process things. I think that being part of the community and knowing people and making friends. They can support you.
As much as my own family and friends want to be there for me, they don’t get it. They’re amazing, there’s so much support, and they’re always there but they just don’t get it, and I think its so comforting speaking to people who get it because even if they’ve not experienced that type of treatment or exactly what you went through, they still get it. Especially with other young adults, they get what it’s like to live with cancer.
I didn’t realise as well the impact that my social media was making because since posting everything, which I have done throughout my whole treatment, I have had so many messages from people who know me through someone.
What was the treatment process like for you?
The first thing they tackle is surgery because you need to take the thyroid which is the cause for the possible cancerous lymph nodes. Mine was 73 but I think 11 is cancerous. Then they give you about 6 weeks to recover before they think about anything else. Then the treatment, in my case, is called radioactive iodine therapy. You swallow a tablet that makes you highly radioactive, and the iodine in it kills all the thyroid cancer cells. I went in, took the tablet and then isolated.
No one was allowed in or out! The nurses came and dropped food in a room that was between myself and them. It was very isolating which I think was made a bit better because I was used to it because of covid. Once my radiation levels dropped a bit, I got home and then had to isolate in my bedroom for another four weeks.
What side effects did you get?
The main one that they speak about is that the treatment can block your salivary glands so you can get a really dry mouth. I never had that bad of a dry mouth. Another main one that they speak about as well if the fatigue you get from it. I think that comes with cancer and treatment. They say you can feel fatigued up to a year after treatment. I was still fatigued from my surgery and with my thyroid levels not being right but that on top of it, I was sleeping most of the day.
What’s something that you wish more people knew about cancer?
I don’t think people are ignorant to it but in the same way they kind of are. Everyone thinks oh it would never happen to me and it does. I know in younger people its less common. Every single person in the world will know someone that’s [been affected by] cancer.
Before I was diagnosed, there were doctors saying that I was young, you’re a teenager, you’ve got a busy life, and that’s why you’re tired. But I wasn’t normal tired – it was proper fatigue. As a young person, they dismiss you. I was told by a doctor that my lump was calcification around a lymph node. And because they were a medical professional I just thought that it made sense. I went away believing that.
In my heart and my head, I knew something wasn’t normal.
I saw that you went to TCT’s Find Your Sense of Tumour. What was that like?
So Teenage Cancer Trust are a charity in the UK. They support young people with cancer and have units and wards in bigger hospitals and they also employ nurses and youth support coordinators in the hospitals.
Straight from the day I was diagnosed, my [TCT] nurse was in contact, and she still is in contact with me, and has been such a massive support. I think that as a young person, from what I know about different areas, I think that we’re so lucky to have so much support.
My nurse comes to appointments with me, she chases up appointments, she explains things to me that I don’t get. Whatever it is, she kind of just became my friend.
So FYSOT was loads of fun things like quizzes and stuff that go on over the weekend. There’s different workshops as well for people to try new things, to speak to other young people, and for it not to be awkward because you’re busy. There’s load of icebreakers as well! I have made so many friends that I know now, and speak to quite a lot. It was such an amazing weekend. We actually did a social media workshop to speak about how to share our stories through social media and things like that. They asked me to share my story!