#desmoid

[coldau]

Started a drug called "Ogsiveo," Since no one else is talking about it on here I'll talk about it. I'm taking it for my Desmoid tumor that ate some of my breast.

First day they sent me a huge care package with my pills via mail, it came with 2 packs of anti-diarrhea pills, hand cream, hydrocortizone, lip balm, and stomach ache suckers. The pills came in a "HAZARDOUS" bag which is wild to me. I'm like 80% sure its not radiation or anything but guess this shows they really are heavy duty.

Its been an hour and a half and I took a walk immediately after taking my pills. My insides hurt a little, but I have no other symptoms as of yet. It is only the first day though...

[leximsiel]

Dear me,

I hereby pledge to continue to challenge my stamina until the day I move on from this life.

For many more exciting moments Lindyhopping.

Sincerely,

Me

[leximsiel]

Sprinkling Salt

Saw my sarcoma consultant around lunch time today. He let me know that my tumour hasn't gotten any bigger, so considered solely on the pain management side of things, as the pain, both from the operation and the 'new' tumour, has been getting worse. Although, I do continue to think negative emotions is what makes the assortment of pain that I can get more apparent.

Like the others, he too thinks that I'll never be as "fit" as I once was. I am grateful that he was straight forward about it. But that's not going to stop me. I love Lindyhopping, and I am still going to work towards being one best on the dance floor.

The consultant did look at me as if I should have looked more relieved though, with the "good" news. I am sorry, but my life was already a living hell before the tumour, which was merely the cherry on the cake.

At one point, he made a statement about how I do something respectable. I got a little confused before he clarified he was speaking about my job, to which I reminded him I am in nursing rather than physiotherapy. Ah, was he diverting the topic away from me asking more about my tumour?

"Respected", funny that, every day I go to bed thinking about why my life stays incomplete. What was it that I did to deserve this living hell.

I do try to fight it, be more positive etc. etc. but most days I'm living fucking miserably, thinking about what grave sin I had committed. Fuck this life. And fuck all of you.

I fucking resent giving so much to society only to be fucked over again and again.

For brief moments, the rage just filled my soul. I am so angry.

I'll feel better tomorrow. Sure.

[leximsiel]

Cornered

In less than 2 days, I will no longer be 100% human. Whilst lying on an operation table somewhere, sections of ribs on my back are due to be removed together with this locally aggressive tumour that has been growing encasing itself the surrounding tissue. My emotions have been largely shut down of late, but I am not sure if I would have felt anything anyway even if you existed - when time is up, time is up, right?

During my years of struggle, no matter how dark it had gotten, at some point I would somehow remind myself how I am relatively healthy physically, compared to most people. No physical disabilities, above average rates of healing, immune to a range of common infections, I have been telling myself all the pain were within my head, things can still change for the better, and one day someone I like might finally see me for who I am.

Another excuse, now lost.

Years, I have spent working on improving myself. I wonder if the version of me 5 years back would even recognise me. From sitting in front of the computer all day, with anxiety levels so high I had to pretend to be “normal,” to where I was earlier last year.

And now, adding onto a long list of misfortunes, whoever is watching finally decided to turn the level of hell I was going through up another notch.

It’d be fine as long as I still dance afterwards. 

I will still dream to find you, to have my own family, until the end.

[chikayouriko]

maybe one day i can like...laugh this off or something.

That’s a thing to do when I'm like....10 years in remission.....

I hope I'm in remission that long,i don't want the pain of a tumor again, or the fact that i would have to do chemo if i got a tumor.

i was lucky,it was a simple surgery this time.

my biggest fear rn if that they’re going to go into do my tummy tuck and they find another tumor.

[shesabossasswitch]

I've been describing my condition as cancer's cousin because everyone keeps asking me why I have to do chemo even though what I have isn't cancer.

[shesabossasswitch]

I think I've been lying to myself for almost two weeks now. I had my MRI on the 19th of September, and my meeting with my two oncologists in the 21st. I found out that the tumor has grown and attached itself to my pectoral muscle. And my family and I decided that chemo and surgery were my best options. After that I didn't contact any of the people I promised to contact and ignored it all. I've been acting all energetic and happy like I usually am, like I haven't been for months because of the stress and fatigue. I told myself that I was better because there's a plan now and that's comforting. But it's not. I'm still scared. And I'm angry, I'm so angry. I'm twenty-four years old. Why is this happening to me? I'm sick of being tired and feeling sad. And I don't want to have to go through chemo. I want to get dressed up, drink with my friends, flirt with guys, go dancing. Fuck this.

[shesabossasswitch]

17 days until my MRI 19 days until I find out how we’re going to treat this thing. 19 days until I find out whether or not I'll be doing chemo. The closer it gets the more scared I feel.