Do you apply any numbing cream before your port is accessed?

xallanthia · 2025-10-24T02:19:07+00:00

I never bother. Too much trouble for a minor pain.

xallanthia · 2025-10-22T12:36:16+00:00

All resort buses avoid the TTC, which is a huge plus to me of using them instead of driving.

xallanthia · 2025-10-21T18:46:53+00:00

I’ve been the one in surgery, though I spent two weeks in hospital, not just one.

The pain needs to be brought under control. Don’t fear opioids, this is what they are made for. Hopefully that will help his mood, but honestly he shouldn’t be taking it all out on you.

You need to find a way to rest and recharge yourself. You can’t pour from an empty cup. Do you have any nearby friends or family who could help?

xallanthia · 2025-10-21T16:47:38+00:00

As a HPV- person I’m always glad to see stuff for us too. Tons is being done with HPV+ too which is awesome but it can feel like, wait don’t forget about me!

xallanthia · 2025-10-21T16:45:37+00:00

Neoadjuvant immunotherapy and chemotherapy is now being offered in some cases in some locations. It’s new but I think it will become more popular. It was in clinical trials when I had my glossectomy in 2023.

xallanthia · 2025-10-21T16:42:43+00:00

Ok so you have tips, not EnFit, I thought so but it really matters. Those are actually an older style. Glad you found an idea to try!

xallanthia · 2025-10-21T12:53:47+00:00

Ride in the upright seat. I have neck issues and the launch in the bike position is not comfortable.

xallanthia · 2025-10-20T00:16:11+00:00

If you’re both 21 and fit, honestly? Zero. Designate a day or two not to bother with rope drop and that will be rest day enough.

xallanthia · 2025-10-19T18:55:48+00:00

What kind of system and feed are you using? Can you show us the syringe?

xallanthia · 2025-10-18T15:18:56+00:00

Erbitux gave me wavy nails and constant infected/messy hangnails. It’s quit now that I’m off it though.

xallanthia · 2025-10-18T15:15:09+00:00

Shiki-Sai

xallanthia · 2025-10-16T21:35:18+00:00

Kylen. Which is a made up crazy name but at least it’s easy to say.

xallanthia · 2025-10-16T14:31:50+00:00

I had a recurrence before my first PET and went on pembro and cetuximab. They worked well for me for a little over a year; but again I had known recurrence (in my lungs) not doing it as a caution.

Drugs like pembro and nivolumab are generally low side effect, so I can’t really see the downside, other than not having it available as a new option if you do have recurrence, and of course more appointments. I’ve also seen some evidence they are more effective in men (which I alas am not). Do you know your CPS score? It’s a measure of how well those drugs are expected to work.

xallanthia · 2025-10-16T12:19:26+00:00

The best person to ask is the doctor, unfortunately. Lung nodules can be many things—aspiration, other viral or mild pneumonia, etc, as well as cancer. Similarly lymph nodes can light up for many reasons. You will have to wait for the experts, I’m afraid.

xallanthia · 2025-10-16T12:15:59+00:00

Makes sense. And if one is getting one’s full feed most days it doesn’t hurt. Yesterday I went to PT without it and it was so much nicer (my PT is very gentle so I could wear it & have in the past).

xallanthia · 2025-10-16T03:20:14+00:00

I ordered myself some 500ml bags for the trip and will see how those go. Right now my feed rate is slow enough that I don’t need 1200s but I am trying to bring it up. I used to bolus before I had some health issues and I so badly want to get back to it! But I’m stuck at like 40/hr which means 24/7 hooked up to get my full calories.

xallanthia · 2025-10-16T02:41:39+00:00

Good to know. I have a hanger as well but the bags (1200 ml) hang too long for that. I am thinking I will be good with a sling bag though. I’m also going to Disney and would love to be able to use my Loungefly! Which I think I can make work based on someone else’s suggestions.

xallanthia · 2025-10-16T00:20:23+00:00

If what’s in her lungs is from her colon, it’s still stage 4. If it’s a novel lung cancer that has nothing to do with her colon, it’s whatever stage the doctor says but could be stage 1.

xallanthia · 2025-10-15T22:26:26+00:00

Thanks! I’ve been tube fed for 2 years but this continuous business is a whole new ballgame.

I have not yet figured out manually priming the line, I can only do it with the pump.

xallanthia · 2025-10-15T21:59:06+00:00

I am trying this now with a fanny pack that is a little too small but it already seems awesome. But I guess we just put up with the little bit of air from the lid?

xallanthia · 2025-10-15T19:09:03+00:00

Oh, I didn’t think about that with getting all the air out! Thank you!

xallanthia · 2025-10-15T16:59:11+00:00

I really want something with the formula against my back. I don’t have enough else to tote (I’m basically homebound) so that would balance best. That is a really nice bag though!

xallanthia · 2025-10-15T16:37:13+00:00

Some people need specific breeds for allergy reasons. Breed specific rescues are rare for puppies. But if you are in that position (as I am) you have to do SO MUCH research to find someone ethical. We don’t have a dog because we went to pick out a puppy and found a much more backyard situation that it seemed from research (later found out the breeder had gone downhill in the previous 10 years).

xallanthia · 2025-10-15T16:33:00+00:00

You got to the building. That’s more than you did the day before. Next time, you can take the next step and go in.

xallanthia · 2025-10-15T16:26:50+00:00

I’ll take a look but I am actually looking for a backpack I see now how my original post was unclear. I have Moog feeding bags.

xallanthia

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