Best Of
Re: Brain Mets Sisters
It’s been quiet on this thread, which I hope is a really good thing! I’m writing today looking for advice, tips, positive stories, questions to ask the neurosurgeon, anything you want to share about prepping for, and undergoing, a craniotomy.
My last gamma knife treatment on one small spot was July 2024. The post-treatment MRI showed what they initially thought to be inflammation. It’s been on watch since then and they’ve recently decided I need surgery to remove it as they now say it’s unlikely to be inflammation since it’s continuing to increase in size. As of my MRI on August 2, it’s 3.4cm x 1.7 cm. It’s on the left cerebellum and is “superficial” or “more easily accessible because it’s not deep”. I meet with the neurosurgeon tomorrow. I have had no additional new mets in over a year and my body has had no evidence of disease for almost 2 years.
I flip flop between feeling like this is the beginning of the end and I’m not going to live much longer, to feeling a bit of a sense of calm that they’re going to cut it out and then any others that should pop up can be treated with gamma knife. I am currently asymptomatic although sometimes I think I feel something, whether it be a headache or weakness, but it could be just my anxiety taking over.
I am scared. I am scared I won’t make it through the surgery. I’m scared of deficits this could cause. I’m scared of the surgery causing seeding. I’m scared if this increases the risk of developing LM. I’m scared of having to tell my kids.
I need to stop googling. Thank you for listening.
harrow
Re: My Husband, My Life, My Love, My Family, My Cancer
@mara51506 Well that certainly was an interesting PT ride lol. Kudos to you for sticking up for the driver. Glad appt went well!
@mkestrel Love your pics…especially your pretty kitty.
@chicagoan Great news, we all know finding a good PC who listens is like a needle in a haystack. Hope your walk to the gym was more enjoyable with NSAID on board
@shanagirl In your pocket for scans this week and may Sept 16th come in a blink of an eye!
@goldensrbest Happy belated Anniversary, hope your dinner was delish!
Rainy here today went to Aldi and they had adorable Fall decor out. It's a bonus to food shop and pic up some great Aldi finds too! Currently burning a Pumpkin Creme candle as I look forward to Fall. I love summer and boating but by this time I'm ready for some beautiful weather. MO tomorrow ,had my thyroid labs for endocrinologist yesterday and Vitamin D is very high. Still the ongoing difference in opinion regarding my low blood calcium. Endo checked ionized calcium level and that was good. Had some weird lip twitching for 2 days and tingling around my mouth which can be related to low calcium. Sometimes I think I'm crazy lol, always some weird crap…oh well we'll see. Nothing earth shattering just annoying..
Hugs to all here♥️
cookie54
Re: My Husband, My Life, My Love, My Family, My Cancer
@mkestrel as always your artistic gifts show thru in your photograhs. I love the little tortoishell kitty sleeping against the leopard fabric.You should frame this picture my talented friend😊🩵
@candy-678 @chicagoan @cookie54 @goldensrbest @mara51506 @irishlove @intolight @snow-drop @threetree @micmel @tanya_djamila. I know your struggles as I read along and my heart and breath Prayers are always with you in your pockets. 💖💝🌸🌹♥️🩵
Tomorrow NM Bone Scan,. Sunday, head MRI then September 16th Radio Frequency Ablation to Cervical Spine And hopefully the Summer from hell will be over😊🌷
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, busy day at cancer clinic. Waited about 90 mins to get in but I listened to music and watched some you tube, was laughing aloud but doing best to cut the volume of that. After appointment, it was close enough to the pick up time I did not bother phoning for earlier one. One call from PT said bus would arrive 204pm which gave time for a 20 min in hospital BUT then got a call from PT saying the arrived, hurried up the hallway, right foot dragged and almost caused a fall, I did manage to catch myself.
All in all, good appointment, had cheese and ginger ale and watch youtube. I am hungry as usual so will order Mcd's. Probably a mcdouble and junior chicken. I like those a lot. Only thing to take caution about is just to keep lifting up feet as I do and pay attention to them as well. I am happy I caught myself too.
Re: My Husband, My Life, My Love, My Family, My Cancer
Saw my new PC doctor yesterday and really like her. After a good discussion, she agreed for me to go back on an NSAID with monitoring. It was really nice to be listened to by a doctor and for us to discuss alternatives. After only one day, my hip pain is almost gone! Such a relief after 2 months of almost constant pain. I'm getting the pain under control and then am going to try to take as few pills as possible but this is lifechanging. Even being able to wash my dishes and brush my teeth without my leg aching makes such a difference. I'm going to walk to the the gym now without feeling dread. All summer walking 2 or 3 blocks has been agonizing but today it feels doable.
Re: Starting Chemo July 2025? Gather here for support!
Hi Everyone, Thinking of you All!! 💗
Re: Starting Chemo July 2025? Gather here for support!
Hey Y'all! MotherFun here to join in the fun. Had my 1st AC 24Jul2025 and will be having my 2nd AC tomorrow, 07Aug2025. I slept all day after the 1st AC and all day the next day after hydration. I felt like Sleeping Beauty! My husband set an alarm and alternated my antiemetics for me. I hydrated really well the 2 days prior to chemo and sucked on a queasy drop from when I got in the car to go to get chemo until I got home. I also wore pressure point bands. I brought out all the Ju-Ju to ward off the nausea!! I tend to get motion sick and sick after anesthesia, so I wasn't playing. I perked up days 3 & 4, then the slow downhill of bone pain and fatigue set in. My mouth was doing weird things like it felt sandy or gritty. No visible sores or ulcers. By Wednesday I was having difficulty eating so it was popsicles and pudding. Friday I started using magic mouthwash and talk about a game changer!! Like clockwork today, day 14, a chunk of hair beautifully came out with my wide tooth comb. I was shocked at first, then remembered - DUH, I have cancer, took chemo and this IS supposed to happen. My scalp and skin has been sensitive and painful for days as a constant reminder of what was about to happen. Talk about a dose of reality. How do you forget that is going to happen??! I have long curly hair past my shoulders. Oh well, on the bright side it will make getting ready for work so much easier! I hope everyone has a super fun week and weekend! I’ll be practicing my Sleeping Beauty gig. 🩷
Re: Triple Negative Stage IV
@gaurykris hi there ! So nice to see your post. Doing fine, moving along on the treatment . So far so good. How are you ? Grief is not an easy companion, though holding the love for your mom in your heart is a good constant space of care. I lost my mom a year and a half ago, and I talk to her each morning over coffee. She loved a morning cup. It’s the little memories that I love the most. Sending hugs to you ❤️
@cookie54 status quo is awesome. So glad all is well. I’ve a taken a bit of a digital holiday and just starting to catch up here a bit. So many posts amongst all my threads to read lol !
Happy Wednesday to all.
Re: How long have you been Stage IV?
@EddieJ Juliana, so glad to hear from you! You sound like things are going very well right now! 🤗
I just had another rehearsal last night. We are really working out all the kinks. Opening night is two weeks from Friday. Lots left to do, but everything seems to fall into place just in time!
DH and I just returned from a short camping trip with friends. We had a great time!
I’m looking forward to fall as well. Let’s all pray for beautiful weather and wonderful scans!
Hugs, Pam 💗
