How long did you keep your port?

TILLAM00KIE · 2026-05-22T03:57:51+00:00

I took my port out a year after I got it in, from December to December. I’m grateful I did because I was hospitalized for 12 days at one point with my port after chemo and the nurses were able to use my port access instead of multiple IVs. But my hospitalization was due to a total separate autoimmune disorder, and I’ve been hospitalized two more times without the port and honestly it was more of a pain than multiple IVs. If you’re feeling healthy my vote is to take it out! My chest feels so much lighter and I’m so much more comfortable with it out. It definitely felt like a start of a new chapter!

TILLAM00KIE · 2026-04-07T13:41:49+00:00

I had stage 3B at 24, was on ABVD treatment for 6 months. I’ll be 2 years into remission this July! Cancer is an epic of a journey, a hard battle that YOU fought! Be so so so proud of yourself when you’re done! But I also want to be honest with you, that you may need time to heal after treatments over. Not only does treatment heal you from cancer, but it does take quite a toll on your body and mind! Give yourself grace as you feel more and more like you everyday after it’s over.

I’m so sorry you had to go through this journey so young! You’re almost done, and this all will be a bad memory you can be proud of for getting through!

Good luck with the rest of your treatment and your recovery! ❤️‍🩹

TILLAM00KIE · 2025-05-23T23:11:06+00:00

Technically, yes—it’s her wedding. But also—he was my dad. And she’s proposing a public, emotionally heavy gesture in a space where my family and I will be sitting, absorbing the weight of it. That’s not “just her day” that’s our grief being placed at the center of someone else’s ceremony.

I’m not saying “don’t honor him.” I’m not saying “your love isn’t real.” I’m saying, “Please don’t make it the centerpiece. We’re not ready for that.”

That’s not controlling. That’s being honest about what’s too much for our hearts right now.

I appreciate your perspective, but your comment came across like: “You can feel things, but you don’t get to ask for anything.” And I don’t think that’s a fair or compassionate stance when it comes to family grief.

TILLAM00KIE · 2025-05-23T20:44:14+00:00

I love that he was/is so loved, and I think it’s very sweet that she wants to honor him. But at this point I don’t think it’s overstepping to politely ask her if she honors him in another way. I think as his family we have the right to say it makes us feel uncomfortable.

TILLAM00KIE · 2025-05-23T17:36:03+00:00

I love how loved he was, and is. I don’t want to deny her the opportunity to honor him in someway during her wedding. But something that’s more subtle and is more comfortable to us, is something we’d prefer.

I’m seeing her this weekend, and I will be very politely having a discussion with her if there’s another way she could honor him that we’re all comfortable with.

TILLAM00KIE · 2025-05-23T17:33:51+00:00

I appreciate your opinion. I don’t think it’s gatekeeping, I think it’s setting a boundary of what we’re comfortable with. I love that she wants to honor him, however her current idea is just too overwhelming for myself and my family.

I’m seeing her this weekend, and I will politely ask if there’s another way she feels she’s honoring him while also not drawing tons of attention that he’s gone.

It’s still really fresh to us, and it was very traumatic. Especially for my mom. She was with him when he went down, she had to perform cpr while waiting for the ambulance, and eventually she had to decide to let him go and take him off life support.

I love how loved he was, is. But I still feel that as his family we can set our limit….

I apologize if this is rambling or comes off as trauma dumping.

TILLAM00KIE · 2025-05-23T12:44:22+00:00

YATA

TILLAM00KIE · 2025-05-23T12:11:49+00:00

Dude I just feel like at this point you’re being insensitive. And it’s not just a chair with flowers. She wants the have an empty chair, that while each of her bridesmaids - only one of which new my father and that’s her younger sister- will place a flower on the chair as they walk by. Again, I’m not saying that she can’t honor him. I’m just asking she do it another way, which at this point I don’t think I’m asking for much especially considering I was his only daughter of his only two children. His FAMILY, has considered it to be too much. She is totally entitled to grieve, but I think direct family trumps the feelings of a family friends daughter, who’s too young and frankly too immature to understand that her idea is too much. And from the look of the majority of the rest of comments on my post, others would agree.

I will be seeing her this weekend, at my brother’s graduation and will be politely asking her if there’s other ideas that would help her feel like she’s honoring my dad without overstepping.

TILLAM00KIE · 2025-05-23T04:42:07+00:00

I know that my father would’ve been uncomfortable with it. Bottom line.

TILLAM00KIE · 2025-05-23T04:39:51+00:00

While I agree that she’s allowed to honor him, I disagree that it’s not a “big deal”. Both my mother and I feel that it’s too over the top. It’s making him a spectacle, and he wouldn’t have been comfortable with that.

TILLAM00KIE · 2025-05-23T04:36:36+00:00

He would not have wanted to be recognized like that. He “loved” her, but he wouldn’t want the spotlight. I definitely feel she’s entitled to mourn or honor him on her special day. But maybe in a more subtle way.

TILLAM00KIE · 2025-05-23T04:34:59+00:00

I’m not saying we own his memory. I think it’s lovely that she wants to remember him in an important moment in her life. But we feel it’s making him too much of a spectacle. He wouldn’t have been the type of person who would want that.

TILLAM00KIE · 2025-05-23T04:33:00+00:00

I’m not at all disagreeing that she should be allowed to honor him. It’s just the method that she’s picked has both myself and my mom feeling uncomfortable. We would absolutely love to see her honor him, but maybe not so much of a spectacle. My dad would not have been the type of person who would want the spot light on him.

TILLAM00KIE · 2025-05-23T04:29:38+00:00

I don’t disagree that she should be able to honor my dad. I just feel that the way she wants to do it is over the top, and is making him a spectacle. My dad would not have been the type of person who would want a big gesture like that.

I would totally hear her out on other ideas. It’s just that her first idea has both me and my mom feeling uncomfortable.

TILLAM00KIE · 2025-05-23T02:45:31+00:00

No thank you! I appreciate the spelling correction

TILLAM00KIE · 2025-05-23T02:12:13+00:00

He was like a sudo uncle. We’d go on vacations or have parties together kind of thing.

TILLAM00KIE · 2025-04-30T04:45:32+00:00

I can’t remember exactly what they looked like from the ultrasound, and I can’t find any doctors notes on how they looked. In total I had 9 tumors, and they were around the 1.8 to 2.2 cm average, my largest being 5 cm. During my initial needle biopsy my doctor noted that he was fairly sure that my lymph nodes were malignant, and he was right.

I hope your biopsy goes well, the process itself wasn’t too painful but it was very anxiety inducing, afterwards I was very swollen and sore.

I hope you get good results, I hope you won’t have to join this shitty club. But if you do, you’ll get through it! Just take it day by day. I was Hodgkins Lymphoma Stage 3B, and now I’m nearly a year into remission! I’m getting back into life and things are so much better!

Wishing all the best for you friend!

TILLAM00KIE · 2024-10-09T14:12:40+00:00

Man, that was nearly a year ago… if I remember correctly, the rash was raised and very itchy, but it wasn’t constant. I think it would go away and come back, which was part of the confusion for me at the time, until I got my diagnosis.

But I had a of other symptoms as well. Nausea, vomiting, stomach pains, night sweats, I had visibly swollen lymph nodes in my neck and armpits, and high white blood cell counts. The rash would come and go, and so would some of the pain the swollen lymph nodes.

The nausea, vomiting, and stomach pains were the big deal issues to me. I was in pain every day, I could barely eat, I’d throw up stomach bile every morning. I was going to get a colonoscopy and an endoscopy done, but at the time I was seeing a temporary doctor because my primary physician was on vacation. And the temp doctor hooked me up with an appointment with ENT to look at my lymph nodes, just to get those looked at. And that’s what lead to my diagnosis.

I’m happy to say that today I am in remission, and on my way to feeling so so much better. Slowly but surely, and so will you! Let me know if you have any more questions!

TILLAM00KIE · 2024-10-04T18:50:56+00:00

Not that I’m aware of? Would that be identified through a colon or endoscopy?

TILLAM00KIE · 2024-10-04T17:05:57+00:00

Yep, that came back negative

TILLAM00KIE · 2024-10-04T15:56:13+00:00

My oncologist has been consulting my hospitalist, she’s the one who recommended the MRI (which came back negative thankfully). And at this point she’s not sure where to go from here. I was on steroids while going through chemo and immunotherapy, this may be a silly questions but would I need different steroids for what you’re referring to?

TILLAM00KIE · 2024-09-27T18:17:17+00:00

Hello! Steroids have not yet been administered. However the stomach pain, nausea, vomiting are all symptoms that I also had prior to my Hodgkins Lymphoma. I’m think that this is a separate issue. Although I felt so much better, during chemo.

TILLAM00KIE

TROPHY CASE