After a lot of contemplating and words of encouragement, I have decided to start a blog, documenting my battle with Hodgkin Lymphoma.
I am not the first to have my world turned upside down by being diagnosed with cancer but through writing down my thoughts and feelings in this babbling blog, I hope to reach out to someone who’s going through the same as I am because I know I’m not alone in my suffering. I never imagined that I would go through something like this so young. Although each battle is personal and comes with its own ups and downs, if my own experience can help another out there going through something similar, feel less scared or alone, I’ll be more than happy.
My diagnosis was a very long and stressful process that came with an array of complications, like an episode of House. It’s hard to put it all down in words, especially without going on and on or breaking down at having to revisit the stress and the heartache again. But here we go…
Although I hate to admit it, I was ill for a long time before my diagnosis. I put losing 3 stone and chronic tiredness down to a-level stress and being run down. Even doctors couldn’t work it out, so in many ways it was a relief to finally know what was wrong with me.
It all started when I developed a ‘rash’ on my legs, over a year before my diagnosis: June 2014. The rash was not particularly strange, it looked like clusters of insect bites running down my legs and across my arms, so I didn’t hesitate with the antihisthimies and pushed it to the back of my mind – I had more important things to think about, like having a great summer with my friends. But like all itchy rashes, this demanded to be scratched which made it worse and eventually, it became infected. Even after a course of antibiotics, the rash came back. Insect bites, these were not. I was even given a cream for scabies which meant having to hot-wash a lot of sheets and a very awkward conversation with someone who wasn’t my boyfriend yet. This was a super-rash that was determined to stay on my skin and cause me the most unbearable, itching pain. Eventually it developed into full-on spots and scabs that bled after I itched my skin raw. My clothes were stained with blood, I couldn’t sleep at night and the bed sheets were covered in blood when I woke up in the morning. I was driving myself and everyone else around me mad with all the itching.
Eventually, after running back and forth to the local GP, I got an appointment to see a dermatologist. After looking at my skin he thought I may have severe eczema or celiac disease. I was given steroids multiple times and hallelujah, my skin cleared and the itching stopped, but this was not a long term solution. It also ruled out eczema so the doctor suggested that I try a gluten free diet for a month to see whether my skin cleared up at all. My cousin is a celiac so this was a plausible explanation.
It worked. Quitting gluten wasn’t as hard as I’d imagined, especially as I noticed a significant change in my skin, though I wasn’t eating a lot anyway at this stage. I kept up the diet for three months until I had an appointment with a gastrountolitist on June the 3rd.
Looking back to that time, I now realise I wasn’t myself at all and it was not down to a-level stress. I was snarky and breathless and most of all I was exhausted. And when I say exhausted I mean I had to drag myself out of bed on a daily basis and I felt weak all day long. Sometimes it was hard to even crack a smile. But I didn’t want to make excuses for myself so I continued to juggle a-levels and a weekend job, whilst trying to make time for friends and a new boyfriend too. I thought I was lazy because I couldn’t concentrate on revision; I just didn’t want to do it. I’d completely lost interest and this future I’d seen for myself was crumbling in front of me, but still, I was too exhausted to do anything about it.
The rest of the process with the gastroentolosigt was going to be drawn-out but hey that was nothing new. He too thought I may have celiac disease and so I was booked in for further biopsy’s and tests in September (three months away). Meanwhile, they took blood tests and realised I was severely anaemic and there was an infection somewhere in my body. Another fork in the road, but finally I had some answers. The severe anaemia was the reason I was exhausted, pale and breathless all the time. As for this infection, it was a bit more difficult to diagnose. I was tested for a whole spectrum of medical conditions – arthritis, whooping cough, fever but they all came back fine. I was a medical mystery. What was wrong with me?