Palliative care isn’t the end..

You’ve heard the words metastatic, you’ve had to sit through a numbing diagnosis, you quickly realize your life is about to change more than you ever thought possible.

They say we’re in constant fight or flight mode, your body is stuck in fight. You’re constantly researching, you’re learning about new treatments, you feel like you’re fighting constantly. No one is listening to you, why don’t they realize I’m not done? I’m not ready to throw in the towel. There has to be more to it. The whole course of my life can’t just change because we changed the diagnosis term to metastatic, since when did that mean an instant death sentence? Don’t I get a fighting chance?

I don’t feel I did. The moment my diagnosis changed to metastatic, the day I heard the word palliative care, everything changed. It was like I was now living to die. No one was listening to me anymore, I had become a shell of my previous self. Fighting to live was secondary to just managing to breathe. I couldn’t catch my breath.

The day I became palliative, was the day I knew everything would change.

I kept hearing words and phrases I didn’t like, I wasn’t comfortable with that yet. Am I in denial? Is everyone around me crazy? I chose option B.

Luckily, I wasn’t the only one who felt this way. I was fortunate enough to have someone who wouldn’t give up on me, until I said I was ready, you didn’t give up. Everyone needs that person. The person who will speak up for them when they can’t, when you’re too tired or you can’t find the words. The person who will protect your fierceness no matter how bad everyone wants to give up on you. Everyone needs that person.

More importantly, you need to stay strong and hold onto it yourself. The word death will surround you, it will become your new state of mind. Your life will now be designed to keep comfortable, not to live. You just need to be comfortable.

Others around you will start to pass, you’ll ask yourself again, am I in denial? I’m not THAT sick, am I?

Yes, you are that sick. But it’s still not time to give in. There’s still hope, and I won’t let it go until they pry it out of my cold hand.

Why does everyone only talk to me about dying? The way I want to die, how I want to die, when I’m going to die. I’m tired of death. I’m still living, I’m still here. Why is everyone giving up on me? The moment they hear palliative, it’s like you’re no longer a person. You’re a ticking time bomb, waiting to detonate. You’ve become a term, a ‘palliative care patient’. You’re no longer worth fighting for. You’ve become a category in which the words only include death, dying, dead.

Palliative care is meant to extend life, it’s meant to keep you safe and comfortable during one of the worst times of your life. It’s meant to improve the quality of your life so that you can properly live. It doesn’t have to be the end. It can be the beginning of something beautiful, something longer term, a change or a hope.

No, this isn’t the end. Not until you say so.

I had a long, difficult journey with palliative care. I learned a lot in my years with this disease. But the one thing that’s worth teaching, is that we decide. We decide how, where, and when. If you’re not ready, it’s because it’s not time.

I’ve had loved ones give up on me, I’ve had professionals tell me when, and I’ve had palliative care tell me how. But it’s you that decides these things, not them. I can’t stress this enough.

This journey has taught me how to fight, when to give in, and not to give up.

I’ve went from that numbing diagnosis, to having a bed in my living room, selling my house, re-designing everything I knew to be “comfortable”, having drugs pumped into my body to where I no longer could see, talk, or feel. I’ve lost my dignity, I lost my ability to speak, and I won’t lose that again. I was fortunate enough to have that person who spoke up for me, who didn’t see me differently. Who didn’t give up. I went from dying, to finally being able to live.

I chose to see this unwanted gift as a way to start living. Palliative care has been my worst experience, and my best experience.

So wherever you are in your journey, know your truth. Know when it’s time, and never give up.

Change could be waiting just around the corner.

There’s a reason we take medication, there’s a reason we fight to get scans and treatment, there’s a reason we don’t sign DNRs. It’s worth fighting for. WE are worth fighting for.

Hear me when I say this, you decide.

Pheo VS Fabulous

One thought on “Palliative care isn’t the end..

  1. Oh my god. That word has rocked my life too.
    When they said palliative to me at first. That question is how long.for me that was what I had to beat a number not an illness so we tend to forget the illness and focus on “ how long”.
    That’s when the problems started. You are made to thing how can I make her comfortable. That’s good to think but it depends who you talk about it. They might be the executers they want too comfortable. Like making a person numb, unresponsive and dead inside so that the exterior will not last long.
    Family,friends,nurses,dr’s and palliative care team.
    All the ones that are supposed to make you fight for your reason to live YOUR WIFE. THey are talking like you should listen to them and they say your in denial because you don’t think like they do. This cannot be the end so please don’t talk to her about it. “ as soon as you turn your back on them they go see her and the questions start. Where, when ,where and how do you wanna die. And when you come back in the room they act like nothing happened but your precious is crying 😢 and they tell you she’s emotional today it must be a hard day.
    Until you discover that they are doing this while you’re eather at the washroom or gone to the cat for something. They just don’t stop talking about DEATH. These are your ennemis be careful it can be anyone or everyone that’s close to you!!!!
    After I realized what they where doing I would never leave them with Miranda alone. They think they do well but it’s a selfish way of doing well. They make you think it will be to much for you , your not qualified for this or my favourite “” if you don’t take care of yourself you won’t take care of her””
    That might be true but I’m sure that if I’m tired and my care level has reduced it’s always better then giving up.
    Then you see the worst days of your wife’s life happen in hours.
    WTF what just happened 1-2 days ago she wasn’t that bad and now she can’t talk , think ,watch moovie
    So that’s when I remembered someone I knew before told me
    IF A PLANT HAS GREEN ON HER LEAVES ITS STILL WORTH FIGHTING FOR AND YOU HAVE TO THINK WHY ITS GOING AWAY. So we went to ate super Hospital in Montreal fought for 10-12 weeks on a floor called palliative the space where you loose friends quicker then you change your underwear.
    That was an eye opening moment I have to bring her back home and try to never come back to this floor. People go to quick on this floor.
    So we got Miranda’s angels Dr’s and nurses to help fix the problem not cure but really give her a best quality of life possible. So we found out the medication problem and Miranda is home with me and it’s great.
    This was not supposed to be a book but I couldn’t help myself.
    Have a great day and love you all.

    Like

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