Chin up.

Hey Suz!

I have not been posting often, either (my daughter started middle school, so the kids’ schedules aren’t in sync at all…challenging adjustment, glad to well enough to be able to do my part for the family). I do stop in to read posts in occasion, though, and you, my friend, needed a digital hug from me.  I’m sorry it can’t be “real.”

First, I’m so, so sorry that you’re experiencing continued (and morphed) pain and discomfort.  I have heard that some radiation side effects are “late onset.”  My own rad onc told me that things can continue to change for 18 months after treatment ends, which means some side effects don’t appear until after that time frame.  She has told me there is usually help in a pelvic floor specialist (a branch of physical therapy), and I do have a friend who does exactly that, though she and I are not in the same city, so her help has been through phone calls.  I am not sure what your insurance would cover, but perhaps trying to get a pelvic floor consult would help?  The insurance situation is rough.  We just got the bill from my 2 year check-ups (continuing NED! YAY!), and because we hadn’t yet met our deductible, the bill hurt.  Of course, now we’ve met our deductible…haha.

I think you’re an absolute BOSS for signing up for a 5K.  I run most days, but no, it doesn’t occur to me to try to RACE!  Please let us know what you hear from the scans, and please know that no one is sunny all the time.  When you’re at the bottom of your rollercoaster, it only means you can better hear the people cheering for you from the platform.

Big, BIG hugs, sweet lady!

Red

Hello Irene!

Like you, my team at MD Anderson has said that PET scans aren’t the best test for follow-up for people who’ve had radiation.  They pick up too much inflammation and give a higher dose of radiation, as a test, than the doctors would like for me to have.  Obviously, I don’t know the specifics, but this philosophy has gotten me this far, so I try to settle in and trust their guidance.

I am so glad to hear you’re moving along in recovery, too!

Hugs,

Red

How lovely to hear from you, Red! I'm so glad to hear that you're busy, active, vibrant and most of all, NED!

Let me clear- when I ran, I ran so slowly that you had to look hard to see forward movement at all. Women pushing babies in prams passed me regularly.

And that was when I ran. Last time I tried even my signature Jogshuffle, it hurt. 

I entered the 5K to get myself walking at least a little distance again. Walking the dog doesn't count because my husband has spoiled her to the point that every time the leash goes on, it's a Delilah Walk, with endless time to sniff and pee and fardle about. I need to walk briskly enough to get my heart rate up, and like Delilah, I'm a doodler. Without the focus of even my slow run, I stop to look at flowers, and talk to birds, and look for interesting fungi. It's delightful and soul-healing, but it's not the exercise my poor bod and bones need.

I'm going to walk both the 5Ks I've entered and I won't be 'racing.' Just trying to get back a tiny bit more of the old pre-cancer Suz.

Love all of you guys so much. I just cant whine at my poor husband or bestie any more, but I need somewhere to vent. What would I do without my Macmillan support?

Spring posies to all y'all

Suz

Suz you need to start writing. You have a certain flair and style in the use of the English language. Your sense of humour shines through

Ha ha! I've got short stories published in 12 anthologies, and two books of my own that are SPECTACULARLY unsuccessful!

Writing another one because I must. Wonder how well a high fantasy would sell with a main character muttering and fuming all the time over her anal cancer?

:D Suz

It could be very interesting reading and a lot of us would relate to that mutterer! Ha ha

Hello Red

So pleased to hear that everything is well with you and somewhat relieved that we both got the same reasoning from our teams! 

Irene x