Weekly Update #45

I’m back at the updates and my chemo – I write this from my infusion suite recliner. It is turning out to be kind of a bummer here. My port isn’t functioning correctly, so I have to get today’s infusion via an IV in my arm. Not super comfy for 4 hours. And also I will need to follow up and do a dye test to see if the port is broken like we suspect. If so, that means removing and replacing it. The silver lining is that this port has caused problems almost the entire two years I have had it, so maybe a new one would work better.

Last week I got to take a week off from chemo and visit Scotland to see friends get married. It was incredible to get to go on a trip like that. When we booked it we didn’t know what kind of shape I would be in when travel came, and it was a delight that my energy levels weren’t the limiting factor in our adventures. I was bummed, though, on day 6 when I was really tired out. We walked up about 13 flights of stairs and my husband and daughter were find by the end, while I was worried that I might throw up or have an unhealthy heart rhythm. And later that day we had to run for a bus and I simply couldn’t do it. I was really upset in the moment – it felt like a punch in the kidney reminding me that I have been working out and am feeling better, but I am still a sick, disabled person. I can look at the evidence and see that we were incredibly active the whole trip and I did things I couldn’t have done 6 months ago, but I still feel the disappointment in my heart. I was lucky that the next day was our train ride from Scotland to England. Looking at the sea out one window and fields of sheep out the other filled up my soul so much.

Friday was scan day for me. I am still so appreciating how much easier to have them in town. It was just a part of my day and I felt much less stressed about it than the ones at MD Anderson. The tech really went out of her way to make it so I didn’t have to go get a second needle stick for my blood work that day. I have heard that my blood marker numbers look good, and I’ll get the official scan results and plan for the next couple months on Thursday.

Now it’s time for my benadryl-induced nap. I’m hoping all the sleeping I’ll do the next few days will help me get over the last of my jet lag.

One thought on “Weekly Update #45

  1. I’m on my third port. Left, right, left. First one defective, second one ruined by an oncology nurse who wouldn’t listen, who then almost ruined the third port before a month had passed. I managed to save it, got a new nurse and that port been fine for years now, even though now it requires a strategy to access it. So I think your work of advocating for listening to patients is extremely important!

    You’ve mentioned feeling odd at some events because the other attendees are PhDs etc and you are ‘just’ a sick person. Sweetie, you are the expert in the room! Those doctors etc may learn from various sources, but the number one resource they have are patients who tell them what’s what. That’s you. You are speaking on behalf of every patient they have ever seen, heard about, or treated. You are teaching them that it’s not about what, it’s about why. Your lecture informs and educates them on something they have not experienced: being you in particular, nor being a patient in general (hopefully). You have chosen an important role in the health care system! And I heartily thank you for taking it on. You’ve chosen to speak up, and that’s doing it for all of us. Thank you for sharing yourself as much as you have already.


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