Brain Mets Sisters
Comments
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Banjobanjo, I find being barefoot is helpful. I can grip with my good monkey toes. I am sorry you fell. My nightmare. I have slipped a couple times, gives me shudders. Rohm, Your news from your oncologist (brain) sounds so promising. I agree with her 100% when it comes to ignoring the internet. I have always stayed away. I like living in the dark about such things! Call me a coward. I am giving blood this afternoon, chemo at 3pm and a fire dept. retiree luncheon at noonish. I want to see everyone, just don't want them to see me. The bald head is a giveaway!! I have 15 more sleeps until 7 days in the tropics!! I think I will stay awake the whole 15. Hope everyone has a peace and love filled day. Jodi
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No, it's not neuropathy that made me fall - just the shoes. I've always been a tripper-upper because I've always walked too fast...
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Hi Jenn,
I'm just catching up. I hope you start feeling bettter.(((((((((((((((HUGS)))))))))))))))!!!!!!
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Hope everyone's feeling stronger - I keep coming on here fully intending to write something. I just wish I could remember what it was.
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Jenn,
I hope hospice can help with the dizzies. Feel better soon. You have my prayers!0 -
Rohm- never heard of leptomeningeal disease, sounds a bit scary but it seems like your onc is pretty on the ball and is going to keep on top of it. Hope the treatment goes ok. Big (but gentle) hugs
Jenn3 - thinking of you (((((((jenn))))))
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morning/afternoon/evening ladies....
just popped pre treatment roids so buzzing today ready for treatment tomorra and hopefully some possitive news..(fingers crossed).....speaking of fingers..that brings me round to a question i thought to ask all you ladies in the know......im having tax +herceptin as treatment did any of you have problems with your fingers hacking and splitting? mine are terrible 3 of them you think id been at with a blade and could do with a stitch..its all round the nail part..and on the other hand im shedding skin like a snake? typing all that it might just be me..lol
well i hope your all well and in good form coz i enjoy reading all your gossip..
have a good'un
all the breast
tracy..xx
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Hi Tracy
Good luck with your treatment tomorrow. I will be thinking of you. Meanwhile I'm sending gentle (((hugs))) your way.
Have they stopped the chemo while you have your radiation therapy? I thought they generally did that to help with healing. Maybe it will give your fingers a chance to heal too.
When I had taxol I lost some of my nails and my skin was in a right old state, I think it's a common side effect. If it gets really bad then they can reduce the dose. You can also use creams to try to help (I used as aloe cream that was recommended for radiation burns, seemed to really help with taxol damage)
I haven't driven for over a year :-( In the uk the dvla require you to surrender your driving licence after a brain mets diagnosis. Typically it's supposed to be 2 years til you can apply for it back again but my palliative care nurse at the marsden says that a number of women appeal after 1 year if they haven't had any seizures. At the moment it's down to us to tell the dvla, there is a change planned soon where the hospital will be required to report the diagnosis (so much for patient confidentiality!). I think that the real problem occurs if you have an accident, regardless of whether it's to do with the brain mets, your insurance can refuse to cover you and that means if you hurt someone (god forbid) and they choose to sue, it could cause all sorts if problems. Anyway my nurse frightened the life out if me so I stopped driving. I don't think there are the same insurance issues in the states which is why it seems to be ok to drive there so long as you haven't had a seizure.
A quick question -
My back is still really hurting from my fall at the weekend. I'm already using pain patches but I'm topping up with oromorph and ibruprofen. Sometines i feel like i am 'stuck' and can't even get up off the sofa. How long do you think I should wait
until i get someone to check me out to make sure it is just bruised?
Cheers
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banjo banjo.. dansko dansko.. they are not beautiful but they are in a way.. and they'll make you taller and a prance a bit like a pony or a princess. They are basically all i wear except for tennis shoes. I curse my husband because my house is just too tall. i can't reach the poles in the closet and the shelves for glasses and plates are too tall.. the Danskos help. I can stand enpointe like a ballerina.
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Thanks, Apple, haven't heard of them here but will seek them out. I'm having trouble reaching things because I can't stretch up without straining my back - have a nice little fold-up set of two steps but would rather use husband!
Jenn - hope your pain eases, thinking of you.
Barbara
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tillycat.... i do and i don't drive. i have my teenager drive me around for driving practice on my long drives... it's a nail biter but the easy country roads are making him a good country driver. in town, i drive. I know my days are numbered, but am fine for now.
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This thread is really active lately.
Apple - sounds like you need shoes with backs to keep them on you feet. Two falls in a week, ugh! Scary.....
Tilly - you're making us all want scones.
There is so much going on it's hard to keep up. Know that I'm not thinking of all of you, its just hard to keep up now a days.
(((hugs))) to everyone.
Jenn3
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Banjo Banjo
I too had trouble tripping when I pulled out my sandles for summer time. They seemed to catch on rugs, steps, cracks. After a couple days of wearing them I'm used to them, but I long for the days when I had better coordination.
I second apple's suggestion of Dansko's (or Sanita - same shoe). I too love them and the extra height can be helpful when the husband is available. If you were wobbly they might be a problem, I am a bit of clutz and occassionally twist my ankle when wearing my Dansko's.
Rohm
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my dansko's have backs - they are not good for walking in grass and on stones, but flat surfaces are great and inside.
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Hey Rohm! Keeping positive is half the battle! Thanks for the update!
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i cross my feet and stand 'en point' for really tall needs in danskos.. it gives me about 4 inches.
I have at least 8 pairs. red sparkles, 2 black, 1 brown, mary janes.. i love the red sparkle ones. it kind of makes me cry.. i was saving the red sparkle ones for special occasions and now i know i should wear them every chance i get.
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i can't find a pic of my clogs .. the red sparkly ones.. but i did find this pic. i really have deteriorated so much from this date. i am kind of stupid... my words don't come out as they should.. i sleep a lot.. like an extra 3 hours a day. I really miss my choir. I make a lot of money now working elsewhere so it is not all bad, but this pic (i am totally lost in the piece of music.. like, what the hell is going on? I am saying WTF? ) kind of makes me cry. I need some scotch or something.. not something i would have on hand.
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Apple you are beautiful inside and out. I admire you and your wonderful art work. You and others inspire me to get up and get going. Your love of music shine through!!
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Apple you look beautiful in the photo. Even your 'wtf' hand movement is elegant :-)
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Apple, what a lovely photo - such pure focus and intensity - sorry you lost the choir but happy that you are still playing and giving pleasure to people. Going to a wonderful 'Happy Joe' (my name for him) Haydn concert on 16th June - first concert since I was diagnosed. And it takes place in the American church across the road from where I live; it is as though Haydn has chosen to visit me and make things easy. I once sang in a choir and we did his 'Creation' - I will never forget it.
By the way, the sparkly clogs sound like Dorothy's red shoes...
Barbara
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So, it's been a month since my WBR and it'll be August before a brain scan (altho I have scans for liver, bones and lungs on Monday and results next Friday). We've been getting ready to renovate both our bathrooms and I've been running around town like crazy buying this, taking back that, scheduling this, taking back that.... Then Monday I quit taking my little dose of steroids finally (.75 mg) and now I am a complete zombie. I need to nap, but I have more stuff to go get and a new light to pick out since the one I ordered online (now wish I hadn't) is the wrong finish. Ugh! The fatigue has caught up with me big time and at a not-very-good time. I will be recruiting my sister (thank goodness she's coming in for a day) and my mom to help me clean out the closets and vanity....
Any other tips on staying at least slightly energetic?
Paula
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Oh Apple, what do you mean by deteriorate? You do look Sharp and quite involved in that photo.
Paula, do you have ritalin? I keep repeating that Palliative Care tells me to use it to get up and do what I want and need to do especially exercise. I have 5mg tabs, and i just nibble a bit to keep energy up without going overboard.
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oh - i am just a lot dumber.. things take longer, i forget things..
I just wanted to share a little news.
I teach piano to two biological sisters. Their parents lost a child.. who had contracted meningitis at age 18 months and was severely (totally) handicapped thereafter. He couldn't feed himself, walk, talk or anything... and died at age 12 of pneumonia. About a year after he died, they adopted another severely handicapped boy who is 17. He is very tiny and also is totally handicapped. They feed him, diaper him.. care for him. Another year passed and they adopted 3 brothers who had been starved and abused. Those boys are twins age 6 and an older one, who is seven.
So now they are adopting 2 more girls.. sisters from an abusive home. One is handicapped and one will be my new piano student.
I am stunned by the parents' generosity and care for these children. They are in the process of building a house on a farm for the lot of them. Total children count including their own who have moved on and married.. 11!!!
Some people really are saints and i just adore my two students.. they work so hard and just love piano. I am so excited to meet the new girl who is age 9. I might teach the 3 little boys someday after they get settled on their farm.
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kathy, i think i do have some (now years old) ritalin in a cabinet somewhere. maybe i will give that a shot tomorrow and see how it goes. i took a nap this afternoon for about an hour, and that did help. i don't guess i'll get much napping in next week while they tear down my bathroom.
apple, that's a really touching story. there certainly are some very saintly people out there. sometimes, i forget how many.
i'd better go hit the treadmill.....
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Apple, what an inspiring family. Thank you for sharing - and for sharing your love of music with those children.
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Mauimom...is the xeloda treating you any better?
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Love your above picture Apple. You could write a whole story around it..so expressive...but sad too...especially if u find it sad. But glad you shared it.
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oh banjo.. i just love Haydn.
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Paula,
Pretty much am I seeing the same thing happening with me. The excessive cleaning, purging, organizing, refinancing and getting the backyard ready for the summer season can you say "CRASH & BURN"! It's been a week out with WBR. For the most part it's 3hrs of uninterrupted sleep. But once in a while I will get 4 or 5 and boy do I thank God, I am forcing myself to just chill. I am so wobbly & shakie it is scary, last night go to find out my blood sugar was 50 from the dam steroid induced diabetes!
Paula with you going down on the steroids it effects you like that? Is it common?
Your going to think I am crazy but My kick your butt in the morning ritual. 1k-cup, cinnamon, ginger, equal ,(low-fat) creamer hersey's sguarfree syrup. Make up your own supercharged Java baby!
I can't wait for you to post pictures ya know ya have to.
God Bless!
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Hi, haven't heard anything new from Lisa (chainsawz). Just concerned wondering if anyone else has heard anything.
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