Hi all.
Late to the party again. This is my travel home day from Toronto after treatment…so just got home.
Self-advocating took centre stage at my Dr appointment again. By the time I was done pleading my case the Dr actually agreed that what I said "made sense" and acted on it. Sponsor approved. Now to see if it helps with my liver enzyme bloodwork this time 😁. I'll post a more detailed account in my clinical trials posts.
i also had to self-advocate for a Life Labs requisition + virtual appointment. This is for an additional appointment my Dr decided she wanted because she is "watching me very closely" and wants to get ahead of things if something comes up. What I don't really understand is that next week was a blood only week for me anyway…so why call me in for two days - with a day in between? That means I would either have to stay overnight in Toronto for 2 nights or do two 6-hour day trips for what my nurse informed me would be a "quick" visit. Nope…not doing it. I'm already starting to feel exhausted from all the travel and was so looking forward to the one in/out day next week. Plus we booked our roofing months ago for next week because it was a mostly off week for me.
I also had 4 screw ups with my post-infusion meds - mostly the Drs fault!! Picture me trying to deal with my PMH pharmacy order in between my all-day 1/2-hour vitals schedule!! 🤣 What a day!!
Now…let's talk treatment day incontinence 😁. I always have pads or liners with me on treatment day - it's a must for me! As soon as they start infusing fluids (drugs, saline), all I have to do is stand up and there's a trickle and it continues all the way to the bathroom. This treatment, I didn't know until treatment started that the Dr had ordered continuous saline drip throughout the night. I usually have a four-hour drip after infusion for trial protocol - and I was prepared for that. Since it was an overnight hospital stay, I really didn't think my products would do the trick, so I asked my nurse if they had pads available. They did! They gave me Tena Supers. They were huge, thick and lofty soft pads - actually very comfortable. I have bought overnight pads, etc. before, but I always experienced those little side leaks if I wasn't careful. I felt so well protected in these Tena Supers - absolutely no leakage! Have to say I slept very well not having to worry about wetting the bed 🤣. I'm not sure if it's a product I can get at a pharmacy or if I have to find them on line but I'm gonna get e supply for my treatment day woes!!
Well, I feel better now…thanks for listening 😘.
Original Message:
Sent: 08-06-2025 14:29
From: Marianne Fallis
Subject: Teal Thursday - August & September 2025
Hi everyone - I hope you are enjoying a wonderful day, enjoying some sunshine and all of the things that bring joy into your lives!
Looking forward to having you join the Teal Thursday chats for August & September by posting below. If you have any questions please let me know.
All the best!
-------------------------------------------