Fear of the Dark

Hello all.

In the last week, the forest grew darker than it’s been in a long while. 

The gravity of the situation really hit home as my head rested on my pillow. It was Sunday night and after a days work and an evening of fun, I took myself to bed. 

I threw the quilt back and climbed into bed, my right arm resting on my wife’s left side as she faced away from me. The fear of the coming days had started to drive its claws into us and was not relenting. We lay in silence, both pondering what was about to happen. Monday would be our last full day together as a family before Evelyn’s surgery. Until now, this seemed like the easy bit. I had visions of taking Evelyn into theatre, going for a coffee and collecting her afterwards. It’s only now, on the eve of the penultimate day that the scale of what would be involved set its weight on my mind. 

The procedure should be routine; make an incision, remove the bad tissue, stitch the wound and cover with a dressing. Of course, nothing is quite so simple. There are so many things that can go wrong, so many unforeseen complications that could arise. I plugged my headphones in and tried to focus on the audiobook I’ve been trying to finish. 

I awoke before the sun had fully risen to the sound of the neighbours cats fighting. It was Monday and the worry set itself back into the forefront of my mind after only a few scores of seconds. It’s unusual, every single day there is reprive from the heartache in my waking moments. I forget about what has happened and for a short time, normality resumes. Eventually, the cogs click back into place and my brain is flooded with the events of the past months and I sink again. Today would be special. Evelyn would be immobile for a while after surgery so a meal out and good walk would help us all. 

We ate in a local pub, my burger was burned and the chips soggy but I forced bite after bite down my throat. Energy is important and I could not afford to let my girl down. Evelyn had a fantastic day, laughing at the squirrels in the park and chattering away. The grown ups were the ones in a sulk. 

Before long, the sun dropped behind the clouds and Day became night. We tried to sleep early to compensate for the exhaustion of the coming day. Little sleep came. 

We arrived at hospital a little after noon. We were ushered into a private room (oncology protocol) and waited for the call to come to head to theatre. Evelyn was very unhappy as she was unable to eat after 0700. We kept her entertained with toys and books, enjoying the last bit of real play that we would have for a while. 

We spoke with the surgeon, a lovely man in his forties with striking blue eyes and a warm Edinburgh accent (let’s call him Dr R). I had to put all faith in this man and I honestly wouldn’t have wanted my daughter’s life in anyone else’s hands. He took his time explaining the procedure in fine detail. He covered the risks as well as the side effects and although tears flowed freely, we smiled and signed the consent form presented to us. 

A little after 1400, our nurse’s head snaked around the door. She forced a smile and said that the surgical team were ready for us. My wife walked the corridor to the surgical prep room so that Evelyn could be anaesthetised. She was inisitent that she would take her this time. I wanted to take her myself, not because of any patriarchal will but to keep the memories of seeing our princess collapse into induced sleep from haunting my wife’s memory as it does mine.

It was clear that the tears had flowed when my wife returned. Make up stained her face in vertical stripes under each eye. We embraced and walked slowly back to our room. 

We tried to pass the time by leaving the hospital and eating in a local fast food restaurant. Time seemed to stop. We sat watching our phones and wishing the time away. Afterwards, we walked to a bar close to the hospital. I’ve not drank since April but today, a double whiskey proved inadequate at stopping my hands from shaking. I thought better of ordering another and we headed back to our room on the ward. 

We sat in silence with only the sounds of a TV show playing on our iPad diffusing the tension in the room. At around 1830, Dr R presented himself in the doorway still wearing his theatre scrubs. His eyes seemed to soften which threw my heart into my throat but after meeting my gaze, his mouth curled into a smile. My blood ran warm again. 

The operation was a complete success. The tumour was removed and now resided in a bucket on its way to be studied then destroyed. Our tough peanut did extremely well in theatre needing only one unit of blood and having zero complications. We were told it would be around forty five minutes before we could collect her from the recovery room so headed outside to breathe fresh air and let our families know that everything was ok. 

Horror was evident on my face when I first saw Evelyn. There she lay, not moving, arms bandaged to protect the cannulas in each hand, a large dressing covering the incision and three pumps filling her with fluids and pain relief. No parent should ever have to see their child looking so poorly. We sat patiently waiting for her to open her eyes. 

She woke quietly, dazed and confused. The morphine was keeping her out of pain but like any opiate, it was keeping her out of reality also. She was having morphine pumped intravenously as well as an anaesthetic infusion located just to the right of the four inch wound that extended across her stomach. That night I went home whilst my wife took her station next to the bed. 

I got home at around 2100, showered and got into bed. The relief washed over me in waves and sent me into a dreamless sleep. 

The following morning, I entered the room on the ward. It had been a rough night but Evelyn already looked stronger. Her morphine had been reduced by 20% and she was moving more. She was still practically immobile but she moved her feet and arms. The nurses removed the cannula from Evelyn’s right hand and later in the day, her left. The day was uneventful with only a further reduction of 20% to the morphine being reportable. 

That night, I settled into a comfy position with Evelyn in my lap and watched QI for hours. Evelyn slept in my arms, occasionally convulsing due to the effects of the drugs. We were told that this would reduce in due course so didn’t worry. By around 0300, I put Evelyn into her cot and rested my eyes. I managed around an hours sleep before returning to my chair and continuing with my Stephen Fry-athon. 

Morning broke and the surgeon let me know that I could start giving Evelyn milk again. She thrououghly enjoyed the teaspoon worth of high calorie formula, keen to get her next meal in her tummy. We had to slowly increase the frequency and amount of feed so as to ensure her bowel had fully awoken from the anaesthetic. By 1800 that day, she was taking 50ml at a time. She also had the anaesthetic infusion removed and amazingly was only taking 20% of the original volume of morphine. As usual, Evelyn was beating the odds. 

The next day Evelyn proved yet again that she is capable of doing things at an incredible pace. My jaw hung in astonishment when my girl, unable to move for the last 48 hours, decided to roll onto her side, pull her knees up to her chest and rolled into crawling position. She shuffled around the cot on her hands and knees then pulled herself up into a standing position. We immediately told a nurse who was also shocked but Evelyn didn’t exhibit any symptoms of pain. She just wanted to get going again. By 2100 that day, we were home again as a family. 

She’s come on in leaps and bounds since being home. In only a week, she is back to her old self. She’s Eaton and drinking normally (albeit in smaller amounts) and playing like any other infant. 

We are immensely proud of her and her progress. We are working to build as much strength as possible before starting high dose chemotherapy on Sunday 3/9. My levels of emotional strength are still low but every day I see my princess improve, so does my resilience. I truly cannot wait to be through this and live as close to a normal life as we can but we’ve got to willingly walk through hell to get there. 

I went to a religious primary school. There we learned that god provides the good and the devil plagues us with the bad. It is for this reason that I left religion when I left that school. How can a kind and just god allow terrible thing s to happen in his world. Why do the good die whilst the bad live on. How can he allow famine and pestilence to run rife whilst the most evil people in the world take up high positions and seven figure salaries. Through my life I’ve learned that bad things happen to good people, it’s chaos and nothing else. We roll the dice every day and eventually the numbers will let us down. The will to carry on is found in those we love and those that love us. There may we’ll be an all knowing creator but I for one believe that he abandoned us long ago. My faith lies in people. It’s people that got me through the loss of my parents. It’s people that stood by my side through atrocities and destruction. It’s people that guide me and help me today. If you read the news, you will read all about the bad and horrid people in the world but regardless of your belief system, regardless of where your faith lies please take a minute every day and reflect on what good you have seen. I see good things happen every day, big things like Evelyn’s progress to the little things like seeing a young man help an old lady find her preferred hair spray in the supermarket. Good things happen, they’re just harder to see sometimes. I fully respect anyone’s belief in God, regardless of what they call their deity. Providing they use the teachings of their religion to better themselves and in turn be good people, the religion works. 

I wish you all love and peace and ask that you keep Evelyn in your thoughts for what is going to be a difficult coming month. 

Thank you. 

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