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Angioimmuneoblastic T-Cell Lymphoma???

Blood Cancers & Disorders | Last Active: Feb 4 8:05pm | Replies (23)
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@loribmt @bizzylizzy @coloradored
Hi,
I want to say thank you to the three of you for sharing your experience and being helpful.
I am being admitted to the hospital on February 10th for my ASCT if my PET shows I am in remission- January 21st and I pass the evaluation (I will on both if these 🙏)
As I begin packing for my 7 week journey I can't help but feel extremely emotional and quite scared. I'm wondering if you have any words of advice?
It has been amazing to be able to chat with others who know exactly what the experience is...Even though I hate why we have to go through this.
Thank you in advance.
Jennifer

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Replies to "@loribmt @bizzylizzy @coloradored Hi, I want to say thank you to the three of you for..."
bizzylizzy | @bizzylizzy | Jan 19 1:49am

@thenester
So this is my advice…
It is such good news that you get this second go at life. Fantastic.
It will feel hard and as if it isn’t going to end, but you know what … morning, afternoon, evening, night … it will pass. Day 1, 2, 3 … it will soon be over and you’ll be enjoying good health.
You’ll look back and the really tough days will be forgotten.
Liz

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Lori, Volunteer Mentor | @loribmt | Jan 19 1:56pm

Hi Jennifer! @thenester! I’m so glad you’ve been able to read through some of the links I posted for you. It really is helpful to talk with others who have ‘walked the walk’! Words of advice…first and foremost…
~Listen and trust your transplant team. They want success as much as you do and go the extra mile to make sure you’re comfortable and well taken care of.
~There are no medals or trophies for being stoic! If you need meds for nausea or anything, tell your nurses! They have your back!
~Listen to your body! That means rest, nap, deny visitors, ignore emails, texts or phone calls if you’re tire! It’s ok to take control of your life. You can say NO! LOL

Pack your phone, ipad, chargers, AND a small extension cord! You’ll thank me for that! LOL.
Pack Jammies, comfy clothing, yoga pants. A hoodie is nice, T-shirts with a V-neck for port access. I tossed in my favorite slippers with firm souls.
Take your favorite pillow and a couple pillow cases. A little throw blankie comes in handy. Though most hospital rooms have heated blankets they can bring for you or you can go to the heater to get one.

Eat what you can, drink plenty of water. For me, room temp water went down really much easier than icy water.

I made it a point to shower (or ‘spit-bath’ 😅) and get dressed every day. The hospital gowns were demoralizing and made me feel like a patient!

For me, walking was key to recovery. Even when I didn’t feel like it, I pushed to walk as far as possible, though some early days it was an effort to walk across the room to the bathroom. While receiving chemo, I’d actually walk 4 miles daily pushing my IV pole! ☺️ I had a squeaky wheel which ended up with my nurses finding me a brand new IV cart!! Whoo whoo Hahaha that was awesome. They even put a photo of Christopher Walken on my IV pole because I’d tell them I was out Walkin’ with Christopher. Here’s a picture! LOL.

I know this feels daunting but it will all fall into place. Do you have any specific questions regarding procedure, what to bring, what to expect??

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