Different corners

On the afternoon after I had had my morning talk with palliative care, about giving up any active treatment, I had a visit from the liver team. They told me they had just had a big discussion with my oncologist and he wanted to start me on the cetuximab therapy the following week. Tubes and drains and no stents and shitty liver function results and yellow and the whole box and dice. I was GOBSMACKED. Could I find something again? Was it realistic to hold on when I had just decided to let go? Was it just too damned hard to hope again?

Also, I knew what it meant. It meant that he was willing to push boundaries, to give it a red hot shot, because there was no question that without it I was going to die, and soon, why not try?

I wish I could wind down the story from here, and say I went home and recovered from the stent and started treatment, but there is much more that it is important that I get out, mostly for the help it may give others in my situation, or even a little understanding.

At this point, I had been laying in bed for days on end with completely uncontrolled pain. There was the pain from the drain site, the blood clot underneath it, the growing met pushing against the liver capsule was causing me to have constant radiating pain from my waist level into my back, pain from just laying there in that rubber bed, pain, pain, pain. Pain relief was completely inadequate and I know for sure that madness that ensued with me wanting to give up treatment was caused in part by my nearly going insane over this.

One of the worst of the pains however was caused by the rigours bought on by the infection. When they called the MET call on me in the morning with a temperature of 39.9, they quibbled a bit about giving me panadol, as it is not the greatest thing for someone with a compromised liver. However, the doctor said it was much more important that I be given panadol to get the temp down quickly than die from septacemia, so they wrote it up and gave it to me straight away. Relief within about 15 minutes. Later that night, after Gaz had gone home and I was trying to settle for the night I started to become really cold again and told the nurse that I was sure my temperature was on its way up again. They called the intensive care nurses down to me – at that point they were having intensive care oversee my care without actually admitting me to the unit. The nurse said that my temp was again nearing 40 degrees and by this time my teeth were chattering, and he ordered that I was given panadol straight away. The nurse said that the doctors had not written up any panadol except for the morning dose and the nurse said that he had just seen the doctors in the corridor and they were to get them to write it up straight away. About 15 minutes I laid there and no one came near me, and then a nurse came in and started stripping the blankets off me and she put a cold washcloth on my head. Now, I know that it was not her fault, she was just trying to cool me off, and I am not proud of it, but this is when I almost completely lost my mind. I threw this washcloth across the room and told her to get me the papers to sign myself out, and I wasn’t staying another minute. I called some doctor a bastard and screamed at him to know why he was torturing me, why do you torture someone with such a short time to live, what was the point? I rang Gaz to come and get me and said I was signing myself out, screaming and sobbing – in 16 years he had never heard me like that I would hazard, it even eclipsed the night I told him to hide the knives. I don’t know what sort of land speed record he broke, but he came flying into the room about five minutes later and got into bed with me, wrapping his arms and legs around me to try and calm me (I did feel sorry for my other ward mates too, I am sure they thought that the mental health unit might have been a better place for me at this point) while I sobbed and howled and begged to be killed, and allowed to die. Finally some panadol was given and when it worked I was able to calm down a little. Gaz stayed in that bed with me until about 3am, and sure as eggs no one dared to tell him to go home.

In the morning I finally took charge of things, and said that I wanted the palliative care unit to take over my care while I was in the hospital. I have been part of the program for more than 2 years, and they know more about pain management than anyone. I have only really been involved through the district nurses though, who come out to home from time to time during times of acute pain and administer morphine, which has succeeded in keeping me from a hospital admission in the middle of the night about 5 or 6 times. This time they involved a palliative care doctor for the first time, and that was the start of the turnaround that I truly believe finds me still here today.

6 Comments on “Different corners

  1. I feel your fear in this…and it’s awful. I’m so sorry this happened to you but so happy you’re out and pain free. Your transparency, authenticity and willingness to be gut wrenchingly real is awe inspiring Julia. Bless you xxx

  2. I have followed your journey since hearing you on Meshel Lauries podcast.

    I wish I knew earlier.

    Later this month will be 12 months since I, along with the help of my father and palliative care, enabled my mother who was 57 to pass in the comfort of her own home from a quick and debilitating brain cancer. We had just 3 months from diagnosis of terminal to the end of her life, a life lived with complete fullness and love.

    I just wanted to tell you that I think your brave and a beautiful soul.

    The education you have given in your journey will undoubtably help many on the same path. It takes a strong and amazing person to do what you have done and continue to do.

    I had to learn the hard way. Before mum’s diagnosis my father suffered a major brain injury and my sisters had their own hands full with their lives and children. I had no one to guide me, to teach me how to help someone pass comfortably, with dignity and ensure quality of life. I wish I had read your book before that. I hope with all my heart that I did the right things at the right time. Im pretty confident that Mums giggles the night before she passed meant she was happy.. But I will always wonder if I could have done more.

    Ultimately mum passed in dads arms while they slept.

    I’m sorry if I bring the mood down with this. I just want to be real. I want you to know that while you suffer, while you wait, while you still find light in the dark.. You have helped so so many people. People that are not equiped with the information to do what you have been through. Families that have no idea what to expect when someone is palliative.

    For this and everything else I thank you. From the bottom of my heart.

    I hope you keep finding the strength and courage to keep keeping on. But know that you are loved. Know that you have impacted people you have never met with your blunt, honest and very personal path in life.

    May you continue to find light in the shade and a heartful of love each and everyday.

    Light and love to you and yours x

    • You wrote from the heart as did Julia, this will help so many people who don’t know to listen to their heart and gut feeling xxxxx

  3. Sending all the love you are so amazing for just being able to share this story xoxo

  4. Thanks for sharing your story in detail. I feel like I have been in the room with you. You are a strong and brave and authentic person. Strength to you, Julia.

  5. Thank you Julia for your total honesty! You share your journey so openly and teach us so much about life, pain and love. I am so glad you are part of my life. Sending all my love your way!

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