It’s now been almost ten days since I said goodbye to the old me, let go of something that had pretty much been part of my whole being for god knows how long and since the day that I could finally begin to live again. I will try to simplify my experience, but I want to add as much detail for those following my journey of this horrible disease.
8th May was one of the most surreal days of my entire life. My parents picked Daniel and I up at 6am and we drove through to Sheffield. I was trying my hardest to remain positive and trying to crack some jokes here and there but I had this feeling in my chest that I can never ever forget. It was like a doom and gloom, a cloud over my head that wouldn’t go away. All I could think about on the way to the hospital, whilst I was sat in the room, meeting the teams of doctors (ENT, neuro, anesthesia team etc), was would I ever see my family again? Would I wake up? And if I did, would I remember them? I remember saying goodbye and walking down to be prepped for surgery – which took SO long, I ended up joking about it being like a spa day as I had weird moon boots on my legs pumping my blood around and a spiky device across my forehead which I have no idea what it was for, but I pretended that it was to exfoliate. Aaaaaand then, what seemed like minutes later, I was being rudely awakened from my dreams of Mauritius by a team of doctors.
It was over, I was alive, hurrah, hurrah! I came around pretty quickly and was so high on morphine that I felt great! My neurosurgeon came around and said the op was a success and he was happy for me to be transferred to intensive care.
That’s when it happened, I felt the nurse touch my foot. I hadn’t been able to feel my feet for months, it always felt like I had really bad cramp and I was walking on clouds, but there it was, FULL FEELING. I hadn’t felt so overwhelmed in a long time, I let out some weird screech and cried my eyes out. The rest of the afternoon until my family arrived was somewhat of a blur.
Day 1-4 post surgery was spent in the hospital, in the high dependency neuro unit at the Royal Hallamshire, a grim and undesirable place, I must say. These days were just painful, depressing, and tiring. The initial high of the morphine immediately post surgery wore off and all I did was basically sleep and lay in bed doing absolutely nothing. The morphine was allowed every 2 hours and every 2 hours I would be calling the nurse. I was never at a point where I could go without the pain medications. I needed it in my system. There were a couple of times where the pain was so bad I found myself kicking and screaming like a baby in a sweet shop crying for sweets that I couldn’t get. It was BAD! I needed the relief. I physically kicked and screamed holding my hair and crying. Imagine that! I never would have imagined myself like that. It hurt that bad. The withdrawal was the worst, my cortisol levels crashed from almost 1000 to almost 0. I was like a heroin addict going cold turkey, I was nasty to the nurses, nasty to my family until I got my hit. It’s the most bizarre feeling in the world.
Thank you to my parents and Daniel that visited me and kept me sane whilst I was in there, thank you to all that wanted to come by, and thank you for all the love that was sent via text and social media. Thank you for those that brought love and support to my family and thank you for all that prayed for a successful surgery. Thank you for those that performed my surgery. I have had time to reflect on everything since being home from hospital and I seriously look at life differently now. If it wasn’t for certain people, I would not have pushed for this to happen and quite possibly, would still be suffering and wondering what the hell was going on with my body!
I still have not had a chance to go back and send my personal thanks, I will get to that soon but my headaches are pretty bad and my eyes are still a little sensitive to the light. As well as my memory – some of the time I don’t know what day of the week it is and can’t remember if I have taken my tablets or not.
When I was discharged, I had to meet with the endo team who instructed me that I must take hydrocortisone as my pituitary gland went from creating TOO much cortisol (from the tumour) to creating basically none at all.. Which indicates a good sign as the tumour was removed successfully. I have emergency syringes and all sorts in case I go into Addisonian crisis and will more than likely have to take this replacement hormone for the rest of my life and if I fail to take it, I basically die. Which is slightly scary!
7 days post-surgery and the aftermath is definitely not what was expected. I knew I was going to feel rough and dear god, I do! I even managed to get sinusitis on top of everything, which makes not being able to blow my nose of 2-3 months just LOVELY. I can hardly move without losing my breath. Standing for more than five minutes makes me dizzy. I have headaches that pound and thump in my head and I can’t sleep that well because of these pounding aches and have a clogged up nose from the surgery. No coughing. No sneezing. No lifting. No bending. No moving. No breathing. No living…you know those type of restrictions. I don’t want to try too hard to get back to ‘normal’ and I know for a fact I am being super impatient but it’s so frustrating. I am so weak, it amazes me. I wish I could get up and down stairs, I want to brush my teeth without wanting to pass out.
But, this is a test of patience. A challenge. It will make me stronger in the end, a minor speed bump that will slow me down but it isn’t a stop sign.
I am excited to see what the future holds, it’s not even 10 days since the surgery and I can already feel changes. Tiny ones, but I know they’re coming.