Hi, This is Sue's father, posting for her. She can't type very well, mixing letters and making emails look more like word scrambles and typing some words backwards w/o even realizing it. This is why she hasn't posted a second part of her recent hospital stay or any further updates to this blog. If anyone from MemingiomaMommas wants to post a link to this blog to the MM forum/message board please feel free to do so since she isn't able to log on there at this time. I know she could use some good cheer in the comments section for this blog so she doesn't get depressed.
Sue wanted me to THANK ALL of you for your thoughts, helpful answers, Setter Zen and prayers. She had her latest MRI last evening (Thursday 6pm) and now the long wait until next Friday when she has her next appt with Dr Peter Black at Brigham & Women's Hospital during which time we will find out what the results are. The good news is that we haven't heard from them today, which means there is no immediate danger! Her new address for cards is Susan Linhares c/o Louise Kelsey 67 Ocean Dr. Mattapoisett, MA 02739.
Sue also wanted me to post an update on her condition, from an email I had recently posted to our family and friends. She thinks it sums up much of how she has been feeling very well. It follows:
Hi
Since her brain tumor operation, daughter Susan has been failing with
significant short-term memory loss, rambling talks, unconsciously writing with
words spelled in reverse, occasional disorientation and right arm numbness and
non-movement, full double vision, inability to open her mouth, insomnia, and so
on. She has been staying with her maternal grandmother, Louise Kelsey, and is
not able to stay alone at her own home. Last Friday she had a review with her
doctor (Dr. Peter Black) and he ordered a series of tests and evaluations.
In a few minutes (6 PM Thursday) she will be having an MRI in Boston to see if
any cause can be detected: the options include bleeding from the area where the
veinous tumor was excised, a sudden tumor regrowth, and a missed tumor in the
brain stem. None of these are good. We hope for a better option.
She asked me to ask our family and friends for prayers.
Best wishes to all
John
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9 comments:
Hi Sue and your dad,
Thank you so much for keeping up your blog. I check it every day. I just posted a message on the Meningioma Mommas forum with link to your blog and an excerpt from the first part of your dad's message here. I think many momma's will hop on over to your blog.
Ironically, Sue, you saw Dr. Black the same day my son, Greg did, 7/28. He had his meningioma removed 8/26, but had to be readmitted a week and a half after dischange and was in for four days.
He too, had a lot of discorientation, lack of contentration, and short term memory loss. He is seeing a speech therapist now for those issues.
He is also nauseous and somewhat unsteady. He wears a scopolamine patch for that and will be seeing his ENT doctor Tuesday and Dr. Black, Friday, 10/6, probably the same day as Sue. Greg's appointment is at 4:40. Maybe we'll see you there.
I wish I could offer you more than just our best wishes for your recovery or and some answers to your ongoing problems.
SusanJRusso (from the Meningioma Mommas forum)
Hi Sue...I just read your blog and I admire you for hanging in there...I work in a hospital and I would hope that we would NEVER treat any of our patients like you were treated. I am a fellow "MOMMA"...and I am keeping you in my prayers.
Lee Anne (lasisk)
Hi Sue:
Another Momma here who just wanted to take a second and say hi and hope things are going better for you. Just remember, you had brain surgery and it takes time to recover so be good to yourself and know it's really necessary to be patient. That word was the most difficult for me as I wanted everything back to normal quickly. We are all thinking about you on the board and wishing you well. Dad, you take care too! Caregivers have it tough. Make sure you get enough rest. Prayers to all!!!
Dianne aka Singer
Hi Sue, Hope this little post finds you feeling alot better. Glad to hear your Dr. ran tests and you'll be seeing him soon so he can straighten all this out for you. Just rest. Don't try and do anything until you get some answers. Sleep the days away. Sleeping IS HEALING. Take care and remember we are all keeping you in our thoughts and prayers. Donna (aka flash85 from mm)
HI Dad: thanks for the link and your taking care.
Hi Sue: I am so sorry these events are happening to you. That hospital event was awful and the "not knowing" is the worst. I am looking at surgery at the end of the month and mine is in a similar spot, so I do feel for you. I hope you find the support and care you need soon. Momma Raven
Sue I am so sorry that things have gotten so difficult for you and I will pray for it to be resolved soon. As for your hospital experience with the ER Dr and the residents, that is just awful. I could share some monster stories with my brain surgery too but unfortunately my monster was my NS. At least you have Dr. Black. Make sure he knows about it. Hang in there sweetie. We look forward to seeing you back online when you are up to it.
"Dusty Rose"
Meningioma Mommas
Hi Sue, Louise, Diane, and John! Gosh it's starting to feel like we have met! Amazing how a phone call can bring perfect strangers together. Sue, I am so glad that your Dad is keeping up your Blog for you. I think you would all be astounded at how many of your known and unmet friends from the Setter world check each day to see what news...There is so much Setter Zen on it's way from all points of the world to you in Mattapoisett.As you know, I am myself familiar with and understand some of the symptoms you are having. Neurological mysteries are not usually quickly resolved, and the M.Momma who advised you to rest is spot on. Enjoy the salt air for me and please give yourself and Louise a hug from, Neva
Hi Sue,
I was sorry to hear that you are having so many problems right now and I am hoping that soon things are going to turn around and you'll be back in the swing of things. You are such a strong lady and you have a million mommas and poppas behind you rooting you on so keep up the fight and you'll win. You will be in my thoughts everyday Sue. Thanks to dad for keeping us informed on your situation. Hang in there Sue. Cathe
Hang in there Sue, lots of zen coming from the Fighting Illini Gordon Setter crew here in Illinois for a positive doctor visit today.
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