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Brooks is just checking in

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi everybody, I know I don’t post here very often anymore. After we lost Kerry I just had to get away for a bit. I haven’t been completely gone and have stopped by like a stalker to read some posts. It’s now been about a year and a half since my last chemo treatment and all and all cancer seems to be staying away and I’m so happy for that. I still have really bad neuropathy in both my legs that at most times I can keep it at a pain level that’s not too bad but at times it gets real bad. Last night it was a real bad and I was up most of the night in extreme pain. It’s the craziest thing how that Oxiplatin can still affect a person so long after treatment. My doctor says it will never get any better. I’m still unable to work and have found something I can do from home on my good days to bring in some money and I’m thinking that I need to check on maybe getting SSI or SSDI. I keep waiting to get better so I can go back to work but it’s just seems to not to be happening. I still get the “Poops” where I’m go like 20 to 40 times a day but most of the time I can keep it under control with eating small meals 5 times a day and taking my Questran. The days of all you can eat buffets are long over for me. Hehehe. I’ve missed all of you very much and I’ll start posting again.

Brooks

ketziah35
Posts: 1154
Joined: Jun 2010

Glad to see you Brooks!

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Thanks for the update. Sorry you are having such a time with the neuropathy. I'm still dealing with it too. My doctor first told me that it was only 1% of people that have any real problems but when mentioning it to her in April that I'm still dealing with it she admitted that she found more people are suffering long term effects from it. Don't think that I'll ever get rid of it completely. Winters and cold weather is the worst for me. Thanks for letting us know how you are doing.

Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Good to see you around, Kemo Sabe:)

Hi-yo, Silver...Away!

-Tonto

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Brooks,
It's so good to see you and hear from you. I love that cancer is farther and farther away for you. Darn that you are dealing with such severe neuropathy.
Glad you're back.

Aloha,
Kathleen

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Well it is about time you checked in. Kinda figured Kerry's death hit you hard. It did all of us. I still think about Donna constantly and it has been almost a year.

Well take care and keep checking in.

Tina

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Good to see you back on the boards. Hope you stay in touch cause we all miss your mug!

Jennie

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i know when life starts getting better we tend to not visit the board as often.but since my recurrence i am on here almost everyday.my neuropathy is very bad in my feet and fingers.i tried to go without meds for 3 months and i could not take the pain.i take neurontin for mine,it does not make it go away but it does control the pain.i never could go back to my old job either,so i was able to get ssd.in fact i went to a job fair for a call center something i have never done but they had on the job training.i had a cat scan a few days before and then when i got my results from the scan well there went all my chances to get back in the real world.you take care and dont stay gone for so long.....Godbless....johnnybegood

dorookie
Posts: 1736
Joined: Jul 2007

Glad you stopped by, I dont get on here as much as I used to either but I always come home again to check in on everyone. Yes check into SSD I think it would be a good idea for you..

Good Luck

HUGS
Beth

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

glad to hear from u take care

michelle

wolfen's picture
wolfen
Posts: 1326
Joined: Apr 2009

Nice to see your smiling face!

Luv,

Wolfen

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Brooks.

I've been seeing you on Facebook, but it's good to have you back here, too!

*hugs*
Gail

minibull
Posts: 56
Joined: Oct 2009

I've been a stranger myself but had to respond to your post. You were the first one to reach out to me when I first came onboard and I'll always be grateful for your kind and supportive words. I'm due for my scan in August after finishing chemo in July last year and hope everything is the way it's supposed to be. I'm really glad you're okay but I know about the neuropathy. I still have mine too but my hands are about 75% okay. My feet are still pretty numb so high heels are iffy. Stay well!
Laureen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hey there Brooks- good to see you on the board!
Just a thought on the neuropathy- have you ever talked to your onc about trying Lyrica? I've personally never taken it, but have heard that some do. My surgeon actually recently prescribed it for me for the nerve pain my rectal tumor is causing, but my insurance denied it for that reason. I think most insurance co's will cover it for official "neuropathy", though & sounds like you definitely qualify as having that.
Just something to look into, if you haven't yet.

Take care-
Lisa

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

Hey Brooks, good to hear from you. I had just been wondering how you were doing (I have just have been too self-centered to post the question).
I though the ileo was bad. For me the reconnect was worse. I had gotten to he point it was unbearable. Was talking about the possibility of getting a permanent ileo, when a chronic infection (from a tiny bowel perforation) gave me a scar tissue blockage. I had the surgery at MSKCC. I am so glad I don't have the days of the everlasting poop syndrome any more (well at least when I do it is in the bag and not my pants.
I had found a few things other than the Questran that really helped me, perhaps they might help you too. Some people advocate not taking all kinds of stuff to regulate your poo, but until the last few months prior to my permanent ileo,, meds and supplements kept me sane (mostly).
Questran (chlorostyramene) and Metamucil, where my base supplements. I took one or the other three or more times a day to make things "clumpy." Questran worked well, but made my stools jelly like and harder to clean up after, especially with accidents. I tended more toward the Metamucil, even though the Questran worked at bi better because of that. I used the MD Anderson Loose Bowel Protocol and took Lomotil or Immodium every three hours (alternated one then the other). On days when things were really bad, I used tincture of opium. Four drops, every four hours I think. When I travelled, I usually stopped eating the day before and took Percoset to stop my GI tract for three or four hours. That was a must for me for air travel. You just can't depend (hahaha, writing depend or depends when talking about poo still cracks me up) on airplane bathrooms being available when you need them.

Maybe your doctor can recommend something else to try. You were a few months farther along than me in dx, treatment and the reversal. I hate to hear of you suffering all the issues this cancer and treatment can bring. As I said, I had to throw in the towel and get a permanent ileo because things had gotten so bad. Here is to hoping things will improve some for you.

I am glad you are back.

Best wishes,

Rick

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