I was diagnosed in August 2009, in Orlando, FL, USA while on a work placement for Disney. I hadn’t for about 9 months, it started with a really bad itch, particularly at night, but there was no rash. Then the constant tiredness hit. But I passed this off as being busy studying for my second year of university and juggling work , as well as enjoying the usual student nightlife. Over those 9 months, i went to the GP several times explaining feeling tired and the constant itch. It was chalked up to stress, but I felt it was something more serious than that.
By the time I moved to Florida. I really felt quite off, days before i left, one of my trips to the doctor for another opinion on the itch led to being prescribed penicillin, i had a reaction that had made my skin blister and cut open all over, especially my legs. The itch was still driving me crazy. While everyone else in Florida was rocking their shorts, i was in leggings to cover my horrible wounds.
One particularly day on my day off, I went to the mall, and I felt so so unwell. I wasn’t particularly eating, I was exhausted, and I’d had this terrible pain at the top of my back, across the shoulder blades. I decided to get a shower and get an early night. When i got out of the shower I collapsed in pain. My roommate took me to the emergency room.
Once established that I had medical insurance the tests began. The doctor had taken one look at my legs and requested an emergency CT scan. Pretty much straight away, a doctor came into the triage room I’d been put in, felt my lymph nodes in my neck, felt an enlarged node the size of a golf ball (I had never noticed that); and told me that the scan had shown a 9.5cm mass on my lungs. He said straight away he thought it was lymphoma, but needed to do a biopsy to make sure, and to determine what type it was.
I debated whether to call my family, I’m very close to them, but it was 7 in the morning in the UK. How do you ring your parents and tell them you think you have cancer. Plus i thought I’d wait and see if it was, i didn’t want to worry them for no reason. Still, I rang them. No matter how old you get, sometimes you still need your parents. My parents got the first flight they could get. And when coming round from a general anaesthetic after the biopsy, I heard my mums voice.
I was diagnosed about 2 days after that. They gave me another operation to put a portocath in, and started my ABVD chemotherapy. They offered to give me all my treatment in the US, but allowed me to return to the UK so long as I waited a week after treatment. I completed my 6 cycles (12 sessions) of chemo at the Christie in Manchester, and had 15 fractions of radiotherapy.
Christie’s had a young oncology unit, and as amazing as they were, I feel I went through the whole thing just tackling it head on and suppressing the feelings of sadness at how drastically my life had changed to being fiercely independent and living in the US, to being totally dependent on my parents and siblings. This hit me recently, I was diagnosed with PTSD, part of my healing is that I want to raise awareness.
In April, I will be 9 years out of treatment. In 2014 I had my first child, and in 2017 I had my second. Children are precious to anyone, but after being told my fertility could be affected, conceiving two beautiful babies naturally makes them that bit more special.
Fatigue Itching Swollen Lymph Nodes
