Your Questions…

A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!

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The Mighty Article

Yesterday I shared a very personal blog that I felt could relate to a lot of people going through similar times.

Not even necessarily sick people, just people who have had fading relationships for multiple reasons after changes in their lives.

It seems it was really relatable because The Mighty approached me to publish my article!

If you missed it, here is the link !

Please take the time to read and share, maybe it can help someone more than you know.

Pheo VS Fabulous 💖

10 things I’ve learned about fading relationships

Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships.

So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. There’s nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.

One day you wake up, and all of a sudden you feel like you have no one left.

‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until there’s no more communication. Everyone just went away...

You can’t help but blame yourself,

if I wasn’t this sick, I’d still have friends.

If I was healthy and could have a normal conversation about monotonous things, I wouldn’t push people away.

If only I could be healthy and not intimidate people who are unsure how to approach this new “sick” me.

If only I wasn’t intimidated by them thinking about me being sick, and could fill in the awkward silences.

…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.

This is the worst part, the pity.

If only these people knew that I’m the exact same person, the same person who was their friend for all those years. The same family member, the very same.

People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole I’d understand, but I’m the very same person.

This is the first time I’ve ever expressed how much it hurts.

How at my sickest I’ve never been so alone.

When someone says, “you must have a lot of people around you!” And you just don’t know how to respond.

How I don’t want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.

But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.

But I’ll never be normal.

So it shall remain…

What I will say is I’ve learned a few things while these relationships have come and gone.

  1. It’s not your fault, even though it may feel like it is, stop blaming yourself.
  2. Often people want to be there, they just don’t know how.
  3. It’s exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
  4. It’s not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
  5. People who are truly your friend, WANT to know how you are. They don’t want the sugar coated answer, be honest with your friends.
  6. Your best friends don’t mind changing plans, or understand when you can’t make it because you’re not feeling up to it suddenly.
  7. Your best friends will make an effort to make YOU comfortable in this new changing circumstance, they’ll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
  8. The people you lost were probably not meant to be close to you in the first place.
  9. Don’t feel bad for making the decision to cut out toxic relationships, even though you might feel like you can’t afford to lose anyone else, it’s not worth putting yourself through hell to have “friends”.
  10. Don’t take for granted the people who did stay around, know that they love you so much, and cherish them every day.

Pheo VS Fabulous 💖

Facebook: @pheovsfabulous

Instagram: @pheovsfabulous

I have news …

Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.

If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.

I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.

I would be heard.

For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.

Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.

We didn’t give up.

I have news …

 

Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.

It’s always bad news …

 

Not this time.

Today, for the first time since my diagnosis, I was told I was stable.

Stable

There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.

I didn’t accept that, I fought. Hard.

Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?

Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.

It means hope...

I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.

Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.

If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.

Now I’m here.

It’s an amazing thing.

My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.

If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.

Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.

Never, ever, give up.

Hope is the hardest thing to have, but it’s worth it.

Pheo VS Fabulous 💖

Facebook & instagram: @pheovsfabulous

“Couple speaking out after psychologist coaches husband to try and kill terminally ill wife”

https://montreal.ctvnews.ca/mobile/couple-alleges-psychologist-tried-to-talk-husband-into-killing-terminally-ill-wife-1.4667916

CTV news tonight @ 6

If ever there were a time to watch the news, tonight is the night. I will be on CTV news tonight at 6 with Emily Campbell discussing one of my most difficult events that happened to us so far.

It’s been a hard day, please support and tune in to see another part of what we as the terminally ill go through.

Once it’s aired , as it’s net cancer November… SHARE! Please share the story everywhere possible!!!

It will be my first time seeing it at 6 too, so I’ll be with all of you, hopefully you’ll be with me too ❤️🙏🏼

It’s CTV Montreal EST, I’ll also share the story here afterwards online, or watch it on https://montreal.ctvnews.ca/mobile/video?clipId=434385

Zebra or Unicorn 🦄

If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.

When you hear hoofbeats, we are trained to think horses, not zebras … 🦓

This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.

NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄

As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…

Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.

I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩

With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.

Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting. 

I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?

It’s the unfortunate truth.

This is your life. It’s yours to save.

We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it. 

We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.

Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.

We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust

🌎✨🌈

Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…

My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷

My heart is so full of gratitude, and I wanted to take this opportunity to share that.

Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂

https://youtu.be/AHerMoNa9AY

Pheo VS Fabulous

XOX

I will try & update as much as I can, (on my good days) 😘

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