Titanium Jen in the Steroid Saga.

One of the hardest battles I would face in the battle of cancer treatment would be taking one singular pill daily to keep the pressure down in my brain that would alter my entire appearance, temperament and personality.

Introducing dreaded Dexamethasone…

When my doctor first introduced me to these drugs, it was due to ‘raised intercranial pressure’, honestly when he first said these words I had no idea what they meant so I just agreed, nervous to ask questions and not wanting to look like an idiot. The doctor I was seeing was an A&E doctor as I had fainted on shift and I was rushed quickly to the closest hospital. Until now it had remained a secret that I had googled what was wrong with me on the trip home from hospital, copying the spelling from my discharge letter. For some reason, as soon as you’re diagnosed as an oncology patient, you’re also bundled with a stigma of ‘medical genius’.

The next morning, I took my first Dexamethasone steroid tablets myself, it only took a few hours for the headaches to ease up. However, it only took until the next morning to see the obvious swelling around my face. I jumped straight back onto google and searched through some cancer forums for some advice from other patients who had experience with this drug, Was this normal? My doctor had said I could potentially get a little bit of weight gain… But Day Two and I had a face already looking like a football… It didn’t take long of me researching to find out I was already suffering from the phenomenon members of my brain tumour community called ‘Moon Face’ and it was only set to get more swollen and rounder.

I carried on with the pills, I hated the lists of side effects I was reading on these forums, but I was so scared about what would happen if I didn’t take them and there seemed to be no alternative non-surgically. Heaven knows I didn’t want a surgery on my brain, I’d done everything to avoid that so far. I was only 17, I had exams, for my future. I’d just managed to pass all my GCSE’s at the highest grades in my year group and wanted to go on and get enough in my A-Level’s to reach university. I wanted to make something of myself, despite the cancer.

I had to weigh up my options, take some tablets that could cause me some discomfort and change my appearance… I could still go to university in pain, overweight and stereotypically unattractive. However, the other option could leave my brain damaged and permanently risk my ability to perform academically. I knew I needed my brain at peak performance to compete in the world of ever increasing levels of academic greatness.

I carried on my treatment of Dexamethasone, but never did I ever dream that the 12 weeks would be so hard, or that my body would become so difficult to live within. I honestly felt as if I’d lost the body I used to have, and it was replaced by a skeleton which couldn’t move properly, cased in an abundance of fat which weighed me down more than I could bare.

Week 11 of Dexamethasone:

My face at this point was 3 inches rounder than it was on the day of admission at the hospital, my GP had taken measurements due to concerns of the length of this course of steroids. I had put on over 2 stone in weight and I was experiencing cognitive and personality changes like I could have never imagined. I would go to sleep around 5pm after getting home from sixth form after eating, and wake again around 7pm, try to complete some revision for my upcoming exams and soon return to bed from overbearing fatigue, joint pain and headaches. The sleep would again last for only an hour or two and I would awake and attempt to revise again, I would wake hungry every single time as Dexamethasone (as with most steroids) was known for its aggressive need to be fed constantly. Each night when I eventually got to sleep I could only sleep for a maximum of 6 hours overall with the night being broken by a deep pain in my joints, a typical side effect of dexamethasone, that had me often crying into my mother’s arms at all hours of the night.

Sleep deprivation, excessive hunger and fatigue that was present from waking was baring its toll at this point in the course of treatment, ‘steroid rage’ is classified as unjustified and irrational outbursts of anger, which were present at this point of my treatment and made it difficult for me to cope with the stresses of A-Level exam preparation, especially when I was struggling to cope cognitively with the sensory overload of a busy sixth form environment and fighting overbearing fatigue to get through a standard ‘school’ day.

Finally, the treatment was over, week 12 came to a striking end, I was weaned down from my tablets, moon face was still in blossom. I had waited 12 weeks to be free from all of this hellishness. I wanted to return to normality, I knew it was going to take a while for all of these symptoms to disappear. But nothing was to prepare me for the first day waking up without Dexamethasone in my system. No doctor had warned me. No hint had been made.

I woke up screaming.

It felt like fire was ripping through the joints in my knees and ankles, I couldn’t bear to move them. Tears involuntarily streamed from my face. What was this pain? Had something gone wrong? I screamed for my mum? She ran into my room, pale as a ghost. I was writhing in pain. I’d felt nothing like it before, it was a combination of a deep burning and bursting feeling deep from within my joints in my legs and as soon as I’d tried to move, it spread rapidly to my other joints. My mother was soon on the phone to my Clinical Specialist Nurse. She had answers quickly, they took me into hospital. I was monitored and offered pain relief. Tramadol for 48 hours took the edge off the pain and fluids, finally I was discharged…

The conclusion and diagnosis for my 48 hours of agony was a simple one, the doctor who had prescribed my dosage of dexamethasone, hadn’t weaned me off correctly and my body had crashed from it. I was in a completely agonising withdrawal, which was avoidable.

I could have been angry, I could have been frustrated.

But honestly, in these moments, I felt grateful to be alive. I knew that this treatment had potentially saved my life and even with all the nasty side effects and including the avoidable added withdrawal at the end of my course, I couldn't express my thankfulness that they had kept me alive when a heightened ‘intercranial pressure’ which caused a seizure and blackout at work and a rush into A&E. I could have ended up in emergency surgery if it wasn’t for the quick-thinking emergency doctor who saved my life that day. Alright, the weaning dosage had a small error, however, no harm was really done in the long term. This young man who treated me was under pressure, working late into the night and trying to save the life of a stranger who may have died when she arrived into his hospital by ambulance. When people heard of the cause of my second admission to hospital due to the withdrawal, they were ready for a full revolt against the hospital, but I objected, and this is my reasoning why. Have some patience with your doctors, because despite the small error with my weaning dosages, he saved my brain from emergency surgery. The same surgery I was so scared would permanently leave me with scar tissue or surgical hardware in my brain before we considered routine tumour removal surgery.

** Pictured above is an example of a more recent 'Moon Face' this is day 6 of treatment where the swelling is starting to come up on the face and is more noticeable around the chin and sides of the face. No photos were taken of me around the first course of steroids due to the sensitive nature of appearance with 17 year old me.

Thanks for reading,
Keep the awareness alive guys!
Much Love,
Jen.