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There will be no funeral today

By on Sep 6, 2017 in Blog Posts, Cancer, Spring | 9 comments

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The phlebotomy nurse, pulled down Joshua’s lower lids and peered into his eyes. I knew that she was looking for signs of jaundice and I also knew there was no hint of yellow. I’d already checked.

“It could be his hemaglobin levels.” She said. We were talking about why Josh has been so tired recently.

“Will he need a transfusion?”

“When she gets the results, Doctor will decide what to do.” The nurse’s tone was soothing but it couldn’t take away my anxiety.

Back home Josh climbed into bed. Back into bed. The twenty-minute trip to have blood tests exhausted him. He slept for another four hours before getting up to go to the oncologist appointment.

The awful truth is that I chickened out this week. I almost always take Josh to his oncology appointments but this week I stayed home. I told everyone I was tired. I was still snotty from my cold. I needed to be here to let workmen in and out. Those excuses were true but not real. The reality was that I just couldn’t face the conversation to come.

Here’s why.

Acute fatigue is a known side effect of Xeloda, the oral chemotherapy Joshua started in August. It’s also a symptom of low haemoglobin, which in turn could be a symptom of more bleeding in the stomach. Josh has also had flu, which can make you tired. Most disturbingly, acute fatigue - sleeping for most of the day - is the most common symptom of end stage cholangiocarcinoma.

Eight months ago, sitting in the worry room, a paediatric surgeon scrubbed at the tears on his cheeks and told us that, if there is was any silver lining to this dreadful disease it was that the end would swift. Joshua would, mostly likely, sleep through the end stages if his pain was managed well. At the time it felt like a small mercy.

Watching him sleep and worrying about how to plan a secular funeral.

Shannon and Josh went off to the oncologist and I sat in the bedroom. I stared at the bed where Josh has slept so very much in the last month: between sixteen and eighteen hours a day. I opened yet another game of Candy Crush, trying to still my imagination. I was too late, my mind had already leapt forward, past the staging, through the last days, to his funeral. Josh has requested a secular funeral, I thought, but I don’t know the running order for a funeral without the familiar hymns and prayers. I chewed at my nail beds, fussing over this trivial detail.

The phone interrupted my worry.

“I was a great appointment! Shannon has never trusted the car phone’s microphone. His voice was a controlled shout. “Probably the best appointment we’ve ever had. She said she was ecstatic with his bloodwork!” I couldn’t quite bring myself to believe his bubbling words.

“She did?”

“She did! She says tiredness is a symptom of the Xeloda but since he doesn’t have any of the others and because IT’S WORKING  we need to stop worrying and let him sleep.”

“Really?” I could feel the familiar curling up of my chin and scrunching of my eyes but the tears came anyway. Tears of fear. Of relief. Of joy. Of not having to plan a funeral today.

9 Comments

  1. Tracy Kinsey

    6th September 2017

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    Oh Penny that is wonderful news!! As a sleep lover myself, let him enjoy dream land! It’s a great place to spend some time. Xxx

    • Marlise

      6th September 2017

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      This made me cry … I cannot imagine what you must be going through. My 19 year old has been suffering severe depression for over a year and there is nothing worst than watching your child sick and not having the answers. Crying secretly almost every day and keep the pose to show ip normal ar work. You are amazing Penny. So glad it is good news!

      • Penny Castle

        6th September 2017

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        Oh Marlise! Isn’t in terrible that you can work with someone for years and year and not have any idea what journey they are secretly walking. I’m so sorry you are facing it such a rough time. I’m keeping you in my thoughts.

      • Isabella Mcewan

        6th September 2017

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        Great news Penny. I check facebook every day to keep up with your news. You know you are always in my thoughts. Lots of love to you all. Isa.

  2. Sheldeen Kingston

    6th September 2017

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    Dear Penny, I can’t imagine the pain and worry you are all going through, especially Josh, with this devastating illness. Your story of unimaginable stress turning into moments of joyful relief are truly heart wrenching and heart warming to read. I always remember my Gran and my parents always said how important sleep is to ones healing, body, mind and soul and I pray that this will be a calming, harmonious and healing time for Josh as his body and mind recovers and I pray for his family and friends as well. God bless you all Penny.

  3. Sandy

    7th September 2017

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    What a rollercoaster, each day, Pen. Thanks for giving us just a glimpse of the ride. I can’t imagine what it’s like for real, but I wish I could clone myself and be there to hold your hand when you needed to share a bit of this enormous weight. Sleep well and heal, darling Josh xxx

    • Sandy Arthur

      7th September 2017

      Post a Reply

      Ha! And I have that same mistrust of carphone speakers 😀 Long live luddites and let’s all become more shouty each year, good practice for shouting cantankerously at the yoof.

  4. Rose

    7th September 2017

    Post a Reply

    No words really Penny, just appreciating how the “see saw” and the “witches hat” of mind, spiral up, down and round, day after day. The steady determination to show up and be present meeting the limbo fatigue of it all.
    Respect and love to you all, Rose

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