Introduction by Kirsty Page (OR:BIT member and Associate Director)
I am proud to be part of HRW’s speciality Oncology team. I am in the privileged position of seeing the treatments behind the cancer evolve, as well as marvel at our relentless steps toward tackling this disease. One of my biggest passions is patient research, and typically this work sheds light on the experiences of those people who are at a very specific moment in their cancer journey – the end of which represents a hazy unknown for many, or a terrifying inevitability for others. Today, we wanted to change the nature of that discourse and take the opportunity to speak to a patient; a person; who managed to get through their experiences with cancer and is now living a normal life.
Hers is an angle we do not hear as often; the devastating news of a diagnosis that ultimately translated into a life changing experience, that has the potential to reassure those who might be in a darker place. Through her eyes, we are able to understand the life changing impact that cancer treatments are having on real people and this is not only motivating but awe inspiring- not just for us as researchers, but for all of us as potential future patients. Knowing that there is hope, tackling the “One in two of us will get cancer” warning and realising this is a statistic that does not have to end in tragedy is surely a salvation we should all cling to, with the hope (and expectation) that this lifeline will be further strengthened, offering more people more hope.
To reflect this, we took the time to speak to Caitlin Reddiex, a Senior Research Executive at HRW who has lived with Hodgkin’s lymphoma, but has now been discharged after completing responding to her treatment and achieving cure.
Let’s hear from Caitlin…
So Caitlin, how did your experience with Hodgkin’s lymphoma start?
I had just finished my first year at University, going through my exams. I began to feel pretty lethargic, but at the time put it down to the amount of time I spent studying, or enjoying the traditional boozy nights out in Liverpool, the latter of which is surely a rite of passage as a first year student. When I began to feel tired, I also noticed that I had a bit of swelling on my lymph nodes, so I went for a general check-up and mentioned it to my nurse. She told me it was most likely to be glandular fever. Pretty much every student seemed to be coming down with it, so she thought I was going through the same. They took some of my blood anyway, and did various tests – the results of were described as ‘weird’, as they hadn’t come back as positive for glandular fever.
What happened after that?
I went back to Uni for my second year! The GP I saw at home in Yorkshire advised me that I should be going to my local GP in Liverpool to make sure everything was ok. So, it was a bit back and forth and I did worry that my GPs in Yorkshire were a bit complacent, they didn’t seem to know what to do with me. Despite another lymph node becoming prominent under my neck (something that was depressing to discover whilst pottering round IKEA) nothing else happened, the same GPs still telling me it was glandular fever. Finally though, I was referred to an ENT specialist in Liverpool. I wasn’t too worried, but I assumed I would get some sort of answers at this point, rather than be told I was ‘fine’, but it was the same old story. However, this time I had a fine needle biopsy and the doctor told me to come back in a couple of weeks. Changes in the biopsy at that second appointment meant I got a scan and a biopsy under anaesthetic.
How did you get your diagnosis?
To be honest, I knew it was coming- I had prepared for it. Like any budding researcher, I had done my Googling. I looked for the symptoms, but I also looked for the treatments, and it seemed as if it was Hodgkin’s lymphoma, then there was actually the possibility of a cure, which gave me a lot of hope. But, I didn’t really want to accept it. I went on holiday with my parents when the hospital rang, and told me to arrange an appointment- and they would recommend my parents be there with me. I definitely experienced the full spectrum of conversations with those who gave me the news. My ENT Consultant was clearly not used to dealing with teenage cancer patients, and how he delivered the news wasn’t great. It felt heartless, and he didn’t even tell me the specific type of lymphoma I had. My nurse was lovely though I have to say – he gave me a big hug, which I needed. After they told me, I was taken in for a CT tracing scan and found myself isolated in a clinical room, with no real explanation as to why. That was a really frightening experience for me. I had just been given a diagnosis and then I was left to sit on my own for two hours.
Then I got the confirmation. It was Hodgkin’s lymphoma. It was weird in a way, it was almost a breath of fresh air, a relief to at least know that my doctors knew what it was. I had an answer. I was told my cancer was stage 2a, but on the formal letters, and after an additional scan it said stage 4, which no one ever shared with me. I immediately started discussions around fertility preservation before I started chemo, but I wanted to get onto treatment as soon as possible. I had my chemo every two weeks on a teenage cancer ward and can’t say enough positive things about the support I got. Particularly from Nurse Sally. She was a really kind person, made everything easier for me. She would organise everything for me, check up on me, answer any questions. An activities coordinator as well was so supportive as well as the Little Princess Trust who helped me choose a wig. I moved from my longer hair to a pixie cut! I felt making this change helped me avoid hard conversations with people at Uni who I didn’t really want or feel the need to share my news with.
My chemo went really well though – that was such a massive relief, a weight off my shoulders. After a PET scan, I was told that I was in remission after just half of the number of cycles I need! I know I was lucky. I know my story isn’t the same as others who go through cancer. I realise how privileged my position was. One of the most painful experiences for me, wasn’t the chemotherapy. It was during my treatments, when I was sharing a suite with other teenage cancer patients who weren’t going to get that same outcome: there was no ‘other side of their cancer journey’. Some of them died while I was still receiving treatment. It was so hard to see that. But I was able to share the burden and benefit from having a really close family network around me, who could luckily take the time off work to look after me. I felt so loved and supported, but I know this isn’t the same for everyone. I knew a boy who was going through his cancer completely on his own. No one seemed to turn up for him. I don’t know how he coped; I wouldn’t have.
And how are you feeling now?
Well, I was discharged about a year ago, but I know I’ve changed as a person since that time. I don’t want to paint a totally rosy picture about my experiences. I’ve heard cancer patients before saying they don’t sweat the small stuff, but I still do! And I think more about the idea of death now, as it has become more tangible to me. Not necessarily my own, (though that’s not to say I haven’t had the odd scare), but I worry about those around me- so in that way, I suppose I do appreciate life more! On the other hand, it might sound a bit corny, but you do appreciate the little things more. I also really appreciate the NHS, even more than I did before, as well as my friends and family. Never take people’s love and support for granted.
Thank you so much to Caitlin for sharing her own experience with cancer.
Words by Kirsty Page and Caitlin Reddiex