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Sjogrens Topics => Living With Sjogren's => Topic started by: Epson on January 31, 2009, 05:45:03 PM

Title: Glad it's over!!!!
Post by: Epson on January 31, 2009, 05:45:03 PM
In by 1:00 out by 7:00, that's how my day of surgery went yesterday and no catheter, woohoo! ;D  Now if the bleeding would stop I could put away the manzee pads, glad I don't the to put up with this every month.

They took out suspected tumor areas and put a stint, the urine floweth.  Other then the blood, sore bladder and the feeling that a cheese grater was used inside my penis, I feel pretty good, much better then the first surgery.

I can't wait for the soreness and bleeding to stops so I can go back to bitching about my Sjogren's and Fibro  ;D
Title: Re: Glad it's over!!!!
Post by: eyeamdry on January 31, 2009, 08:43:09 PM
Way to go Epson.  I'm sure it feels good to be "catherless."   I hope you still feel as good after the "medicine" wears off.
 ;D  Lucy
Title: Re: Glad it's over!!!!
Post by: Pooh on January 31, 2009, 08:53:04 PM
Aww Eps, so glad to hear things went as good as they did.  Please, don't stop "bitching" we wouldn't know who you were if you did that.  Besides you only say what they rest of us want to and are to scared to.  :D

Take care and rest up,

Pooh
Title: Re: Glad it's over!!!!
Post by: lynnmarie219 on January 31, 2009, 09:18:56 PM
Epson,

So good to hear that all of that is over for now and that the surgery is done.  I wish you a speedy recovery from your procedure and I hope you feel better very soon!

Lots of hugs to you!
Title: Re: Glad it's over!!!!
Post by: Bucky on January 31, 2009, 09:35:32 PM
<<Now if the bleeding would stop I could put away the manzee pads, glad I don't the to put up with this every month>>


Epson - ha, I can only imagine what you would have to say if you had to deal with bleeding and pads monthly!!!  Sorry buddy, but you have no clue what's it like monthly for 35+ years  . . . . . be thankful you're a guy!   ;)  (We won't EVEN go there talking about having a mammogram!!!)

I'm glad to hear your surgery went well and much better than the last one. 

Take it easy - wishing you a speedy recovery . . now you can relax and enjoy the rest of your weekend.   ;D

Bucky
Title: Re: Glad it's over!!!!
Post by: irish on January 31, 2009, 09:40:00 PM
Epson, You are as bad as my hubby---he would go so far as to lie to get out of having a catheter. Seriously, I am glad you have that over so you can relax a little and enjoy the football game. Will pray that these questionable tissue areas have no cancer.

Also, if you quit "bitching" we would think you really were sick!!!!!Irish ;D

Boy, I just read that last sentence over and it doesn't sound very nice---not what I meant to say at all. I was trying to tease you about the "bitching" as referred to by Pooh. You know we all care about you and enjoy hearing from you no matter what. Irish
Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 01, 2009, 01:19:55 AM
Espon

WOOOHOOO !! ok your sore but result :)   , hadnt noticed you bitching , but then im scottish we dont know any different   ;D
T x
Title: Re: Glad it's over!!!!
Post by: ruby52 on February 01, 2009, 07:45:59 AM
So glad your surgery is over.Speedy recovery.It's not called bitching it's sharing thoughts and ideas!
                                                                              Ruby
Title: Re: Glad it's over!!!!
Post by: Mark54 on February 01, 2009, 09:58:57 AM
Epson,
     I glad your surgery went well. I'm with you, I hate the catheter!! You are a welcome voice on this forum. Chele and I pray for a speedy recovery.

God's blessings,

Mark ....
Title: Re: Glad it's over!!!!
Post by: lesleyjoy on February 01, 2009, 10:46:40 AM
Hey Eps so glad the surgery went better this time, please keep us informed about the biopsy results.

Cheery, Lesley (NZ)
Title: Re: Glad it's over!!!!
Post by: Sjenny on February 01, 2009, 11:41:04 AM
Epson:

So glad it went well - I hope that is the last of it and you have a speedy recovery!  No catheter and the Superbowl today, can it get any better than that?

Sue
Title: Re: Glad it's over!!!!
Post by: Patze on February 01, 2009, 03:36:47 PM
My fine sharp toothed friend,

I am so glad to hear that things are finally better for you!  You've had such a tough road to travel, but I'm glad that the road is now straight again (those curves are just murder ;))!

Take care and I hope that you feel like your old self soon!


Patze
Title: Re: Glad it's over!!!!
Post by: trector1955 on February 01, 2009, 04:09:54 PM
Epson
        Glade that is over and you are ok. It won't be long until the pain goes away. Good Luck with everything else
Theresa
Title: Re: Glad it's over!!!!
Post by: Chana M on February 01, 2009, 04:28:28 PM
Hi Epson

It's SO good to hear that you're ok, albeit sore and 'grated'.  I'm glad you feel better than after the first surgery, although I hope that's not just because they've been generous with the pain meds!

Like everyone else I love your 'bitching' and teasing, though I'm not sure the Canadians are so keen on you.

Take good care of your dear self
Title: Re: Glad it's over!!!!
Post by: Epson on February 01, 2009, 04:55:38 PM
Chana,

I love Canada and Canadians, just keep that darn cold air up where it belongs and keep your geese in your own back yard ;D
Title: Re: Glad it's over!!!!
Post by: Chana M on February 01, 2009, 05:15:29 PM
Hmm ... did they actually prove that it was Canadian geese that forced the plane into the Hudson?  And have you really seen maple leaf shaped snowflakes?  I think not.

I've never been to Canada so all I know about it comes from films like 'Canadian Bacon'; and all I know about Seattle I learned from 'Sleepless in Seattle'.  You can see I'm a highly educated and cultured woman!  But I do know that people from the USA travelling in Europe have taken to describing themselves as Canadians so that they get treated better.  Maybe things will change now?

Hope you're healing well and feeling 'chipper' as we say here in the UK.
Title: Re: Glad it's over!!!!
Post by: Shari on February 01, 2009, 05:22:45 PM
Epsom...I have not been around for awhile so am not up to date with what has been going on with you, but I to am glad that your surgery is over and that yu sound very positive.

I kind of cringed when you made the comment about the grater!!  OUCH!  I had a hydro distention done to my bladder and there was alot of blood afterwards.  I have to have that done periodically.

So take care, enjoy the pain meds...I'll be on them starting tues after my surgery.

Good luck on the outcome of the tests, everyone is rooting, and not just for the football game, but for YOU !  Shari
Title: Re: Glad it's over!!!!
Post by: eyeamdry on February 01, 2009, 05:58:10 PM
Quote
Like everyone else I love your 'bitching' and teasing, though I'm not sure the Canadians are so keen on you.

Visit any US/Canadian border cities (US side) and half the cars in parking lots and on the streets are from Canada.  It's true.  From our stores to our casinos.  Lucy
Title: Re: Glad it's over!!!!
Post by: Collie on February 01, 2009, 08:55:10 PM
Epson,

So glad your surgery went better and you did not need a catheter, but that monthly stuff, i agree, men could not handle it!!

Collie
Title: Re: Glad it's over!!!!
Post by: genko_b on February 02, 2009, 07:19:27 PM
Well, Epson, I feel for you with the whole catheter business. They took mine out on Friday and sent me home from the hospital. I ended up back in the ER Saturday am after developing urinary retention overnight. Very painful and scary. Back home with a cath again, then over to the doctor to remove it today. All in all, I prefer no catheter, but not being able to pee was a drag as well.

Anyway, I'm recovering slowly here. Every night someone new brings a meal over; one of our congregants is sending her cleaning lady next week. She also gave me a sponge bath, and will come by tomorrow to do the same. My husband has been blown away by the support.

Hope all is well with everyone here. I'm not much for browsing I'm afraid. I hope Elise's leg heals soon.

Genko
Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 02, 2009, 11:50:01 PM
genko

wow!! truly glad your getting help, we all need that . Glad your spirits seem good, and that your getting there slowly, hope you can sit in your garden  :)

T x
Title: Re: Glad it's over!!!!
Post by: pudmott on February 03, 2009, 08:01:12 AM
Epson my friend,

you have a way with words, seriously even i crossed my legs with the cheese grater bit and last time i looked i didnt have a penis. better check that again......

nope no penis but scared nether regions at the thought of a cheese grater

am glad it all went well for you buddy and no genital straws you gotta be happy with that

pud
Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 03, 2009, 08:19:17 AM
Epson i realised last night when making cheese sauce that i shall never look at cheese graters in the same light again, cheers for the imagery at dinnertime lololololol
Title: Re: Glad it's over!!!!
Post by: Katybarstool on February 03, 2009, 09:38:21 AM
Genko

Lovely to hear from you. I'm so pleased you are being well looked after. I bet you would do the same for other people.

Hugs
Kathyx
Title: Re: Glad it's over!!!!
Post by: Epson on February 03, 2009, 02:59:59 PM
I thought it was over, but it never is.  I went back to work on Monday and boy, let me tell you how sore my bladder is, ouch!

Every time I have to pee, that would be like every 45 minutes, I need to bit down on a bullet :o  It seem like this is a never ending nightmare with no light at the end of the tunnel.
Title: Re: Glad it's over!!!!
Post by: kimbo on February 03, 2009, 04:02:46 PM
Epson,

Time heals all wounds...........Thats all I got for ya.    :)

Hang in there!    ;D

Prayers and smiles for you, kimbo

I am anxious to know results of tissue.
Title: Re: Glad it's over!!!!
Post by: Chana M on February 03, 2009, 04:06:02 PM
I'm really sorry to hear that you're in so much pain, Epson.  I know it's bound to be painful after surgery, but could they not give you more pain relief so that you can at least pee without such agony?  What meds are you on right now?  I don't think 'bullet biting' can compete with good old morphine.

It must seem like a never ending nightmare but I hope it helps just a little bit to know that we are here with you, in all corners of the globe.

Take care, dear friend

ps have you tried peeing in the bath?  I don't mean as a routine thing (!) but at the moment to help with the pain?  I know it's not possible at work, or every 45 minutes, but in the evening at home it might help.  It's like the old joke about how you spell 'psychology' - with a silent 'p', as in 'bath'.
Title: Re: Glad it's over!!!!
Post by: genko_b on February 03, 2009, 09:41:50 PM
You are going back to work, Epson? I can barely sit up straight, much less pee, without making a plan of attack for the process.

Has the cheese grater effect cleared up some? A friend brought a casserole over today and said he had "just grated a little cheese over it" and I must have made quite a face because he said, "Oh no, you are not allergic to cheese or you?" To which I replied, "Never mind, cheese is fine, it was an unrelated thought." How could I explain.

Genko


Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 04, 2009, 12:24:47 AM
Hang in there Epson

sounds like post child birth experiences i had with peeing and pain, what seems like an eternal ball of fire causing pain, all of a sudden eases of, drink plenty , i know you dont want to but drink, cranberry juice settles the acidity of the urine and might be a good idea to drink some of this for a while, also protects the urinary tract from infection ,it is intense pain, but it does ease all of a sudden, promise there is an end in sight x 
Title: Re: Glad it's over!!!!
Post by: pudmott on February 04, 2009, 01:07:25 AM
Epson

that must be bad pain my friend i dont envy you at all. PLease dont bite too hard on the silver bullet you dont wantdetal work to add to the other stuff going on

Have you tried havng some ural to alkalise your wee so it wont hurt to much.  otherwise yeah go for the big meds

hope it improves for you mate

Pud
Title: Re: Glad it's over!!!!
Post by: Epson on February 04, 2009, 11:13:45 AM
Chana:  I'll bite the bullet rather then take morphine.  Morphine causes projectile vomiting, not good.  We don't have a tub bid enough for me to get into, would peeing in the shower work?

Pud:  I was taking some pill to neutralize the urine, but it didn't help.

Genko:  You will never look at grater cheese the same way again.

McHaggis:  I stocked up on cranberry juice, so far no good.

Kimbo:  I got the results today, another cancerous tumor, but kidneys look o.k.

Title: Re: Glad it's over!!!!
Post by: pudmott on February 04, 2009, 11:17:13 AM
AWW MAN

Sorry to hear there's another one. Are they going to get that too? I will hope and pray that all turns out well for you.

Sending the big good vibes your way

Pud
Title: Re: Glad it's over!!!!
Post by: Katybarstool on February 04, 2009, 11:26:53 AM
Epson

I'm so sorry to hear about the new tumour. What are they planning next?

Hugs (gentle ones)

Kathyx
Title: Re: Glad it's over!!!!
Post by: BonusMom on February 04, 2009, 12:58:24 PM
Oh da**!  I'm sorry that they've discovered another tumor  :'(

You've faced so many challenges, but they haven't affected your wickedly wonderful sense of humor, Epson!  You have made me smile (albeit it crossing the legs-saying EWWWW!!!!) with your posts.  I always look forward to see what you've added to the forum  ;D

I don't know your history Epson, so please pardon me if it's already been "asked and answered", but are your kidney/bladder issues AI related?

Title: Re: Glad it's over!!!!
Post by: Epson on February 04, 2009, 01:16:34 PM
Well, the tumor was removed on Friday, but I got the report on it today saying that it was cancer again.  BCG therapy will start in a few weeks.  I also had a stint place in my right ureter

As far as what caused it, hard to say, but I don't think I can blame it on Sjogren's.  It could be due to DES exposure as a fetus or chemical exposure that I got at work.
Title: Re: Glad it's over!!!!
Post by: Scottietottie on February 04, 2009, 01:19:52 PM
Shoot Epson - that stinks! I'm glad the kidneys are OK. I hope you get more comfortable soon. I know what you mean about morphine - it makes me throw up too. Totally detracts from any pain relief it gives. I don't even think it makes the pain go - it jjust makes people too incoherent to tell anyone about it!

Take care - Scottie  :)
Title: Re: Glad it's over!!!!
Post by: ohiolady on February 04, 2009, 03:47:41 PM
Epson,

I am so sorry about this news.  It is not an easy thing to deal with when you've been told you have cancer and knowing it can return. One thing I've learned is to live one day at a time and not think too much.  Each day has enough trouble of its own without borrowing from tomorrow.

I just saw my surgeon today and he said, I wish I could tell you 100% that it will never return but I can't, it was cancer.   My husband said, in some ways, you have a gift, you will not live life glibly.   Whoops, just realized I'm getting deep.  Just know that I care.

Sending concern and prayers your way.

Anna
Title: Re: Glad it's over!!!!
Post by: Chana M on February 04, 2009, 03:55:18 PM
Epson - I'm really sorry to hear that this too is cancer.  There's nothing I can say that doesn't sound trite - I know because I've written and rewritten this message trying to find the right thing to say!  Just to let you know that you have friends who care about you in all sorts of odd parts of the world, and they're all sorts of odd people too.

Anna's right - and why not get 'deep' at a time like this? - that 'you will not live life glibly'.  Just as long as you live it with a wry smile on your face.  After all a lot of it is really a bit ridiculous.

What is BCG therapy and how will it affect you? Will you be able to continue working?  Will the dog cope?

Take good care of yourself
Title: Re: Glad it's over!!!!
Post by: kimbo on February 04, 2009, 04:04:32 PM
Epson,

Sorry to hear the about the tumor results. I am sure you are so tired of all the nasty health stuff.

You really are in my prayers and thoughts.

We are all so proud of your wonderful sense of humor and great fun attitude. But if you feel like rage-ing we are here for you to rage, also.

Hugs, kimbo
Title: Re: Glad it's over!!!!
Post by: genko_b on February 04, 2009, 06:01:07 PM
Epson:

Absolutely not fair, not fair at all.

Yes it is OK to pee in the shower.

I have thought about getting a new cheese grater for kitchen use. I mean, you know what I mean.

Here's a headine for you: "Ohio man, beset by tumors in the nether regions and random other health occurrences, leaves string of helplessly laughing women in his wake."

A rabbi friend of mine in Philadelphia sent me this in an email:
there is a Hebrew prayer in the daily morning service that thanks God for the miracle of the workings of the human body and  that " all  bodily openings that should be open-remain open  + that " all  bodily openings that should be closed---remain closed".
The children [at the yeshiva - Hebrew school] always laugh at this one---little do they know!

I'll have to find the rest of the prayer!

Anyway Epson, you know you are in our hearts and thoughts and prayers. There are no words for the wonderful support you have given all of us, and we are doing our best here to return the favor and call in any chips we can on your behalf. Your life is very precious to us all.

Take care, dear friend. Try not to work too hard.

Genko



Title: Re: Glad it's over!!!!
Post by: ktfabian on February 04, 2009, 06:20:17 PM
Geez Epson-

Your really not getting any breaks, are you?  I'm very sorry the tumor was cancerous and hope that, with this one, the cancer is gone.

I hope you can find a relatively pain free state and live there happily for a while (and I mean mental state, not US state,  With the economy in the sewer, I doubt you could find a happy state in the US right now!)

Don't be surprised if I'm up emailing you at 3:30am this morning after having nightmares of robotic cheese graters chasing giant penises around, though.

Hang in there, Epson.  I hope the year only gets better from here,
Tracy
Title: Re: Glad it's over!!!!
Post by: quiger on February 04, 2009, 06:47:24 PM
Hi Epson,

Drat, definitely not the news you want to hear. Hopefully the docs will make short work of that tumor and you will be able to get on with your life and leave all of this mess behind. I will be thinking of you and praying that this will be the last of the bad news. Hang in there, you are overdue for a break.

quiger

Title: Re: Glad it's over!!!!
Post by: irish on February 04, 2009, 07:45:20 PM
Epson, Sorry to hear that the tumor was cancer. I would bet that your gut told you it was so you weren't too surprised. I am not up on the BCG treatment so I will be interested to hear on it goes. Also, it is more common for people who smoked to get bladder cancer---so they say. Who knows in this polluted-chemical world that we live in.

Anna, I must say that I missed your surgery results. Sorry also about your cancer. Will hope and pray that all stays well with your body.

Hang in there you two---there are always many ways to treat things these days. Endurance is a big issue though. Irish ;D
Title: Re: Glad it's over!!!!
Post by: Patze on February 05, 2009, 02:33:16 AM
Hi Epson,

Dang, I'm sorry that the tumor was cancerous, you sure could use some good mojo (sending you a ton!).  Take care my friend, and I'll keep you in my thoughts and prayers.

Patze
Title: Re: Glad it's over!!!!
Post by: Bucky on February 05, 2009, 06:41:28 AM
Epson,

Sorry to hear your tumor is cancerous.  They have made great strides in treating cancer these days - lots of success stories. 

Have you ever considered taking up boxing?  Might be a good release for you to punch the crap out of the hanging bag (don't know what's it called) for all your health problems.  Poor bag might not last very long, but it might make you feel better.   ;D

Hang in there and know we are all here routing for ya.

Bucky
Title: Re: Glad it's over!!!!
Post by: Sjenny on February 05, 2009, 07:04:01 AM
Epson:

I'm so sorry for all you are going through - like everybody else, I really appreciate and am uplifted by your great sense of humor.

According to what I read, BCG treatment is very effective and studies show that BCG demonstrates long term protection from tumor recurrence, improves bladder preservation and increases survival significantly.

I'm curious about the fact that since BCG works by stimulating the immune system to fight the cancer cells and Sjs is generally treated by dampening the immune system, how your doctors will work this all out - but Sjs is the least of your worries, I'm sure.  Are you takng Plaquenil and can you still take it while being treated with BCG?

Hugs,
Sue
Title: Re: Glad it's over!!!!
Post by: Nathan on February 05, 2009, 08:30:56 AM
Sorry to hear about the new cancer Epson. Here's to hoping you beat it! We need our comedian around

I'm curious about the fact that since BCG works by stimulating the immune system to fight the cancer cells and Sjs is generally treated by dampening the immune system, how your doctors will work this all out - but Sjs is the least of your worries, I'm sure. 

BCG is also what Faustman Labs is experimenting with to cure Type 1 Diabetes. They're going to try it in other AI conditions, including SjS.
http://www.faustmanlab.org/ for more info.
Title: Re: Glad it's over!!!!
Post by: Chana M on February 05, 2009, 09:04:25 AM
Epson, dear friend

All your friends are thinking about you and, unbeknownst to us all, so are complete strangers.  My daughter phoned to tell me about an odd conversation she had with her college tutor.  Now bear in mind that this took place in a Cambridge college, complete with 14th century quadrangles, college porters, and all sorts of odd rules and regulations. 

Her tutor asked Ruby, 'Did you see the huge phallus?'. (I'm not sure I'm allowed to use that word - moderators please check! - but that's the technical term Cambridge tutors use.)  Rather perplexed, Ruby asked 'Which one?'.  The heavy snowfall on Sunday/Monday/Tuesday encouraged some people to make snowmen and others to be a little more creative, including a group of Cambridge undergraduates who created an enormous, and anatomically correct, penis in the middle of the main quadrangle of college.  The master saw it and ordered the porters to destroy it; obviously the man has no sense of humour, or maybe he was threatened by its size?

I thought that the idea of an ice version of your most painful place might help in those cheese grater moments.

Take care

Title: Re: Glad it's over!!!!
Post by: pudmott on February 05, 2009, 12:04:13 PM
That is too funny chana

and im sure will help epson in those cheese grater moments

Epson buddy i hope the edges of the cheese grater are weary down for you now

keep fighting the good fight buddy

Pud
Title: Re: Glad it's over!!!!
Post by: Dolly Dimples on February 05, 2009, 02:01:43 PM
   To all that has been said Epsom, I send my wish and prayers to you for a speedy recovery,
  With your  "greater" wit and humor you will get through this all this .
               
                                   Keep at it , cheers Dolly
         
Title: Re: Glad it's over!!!!
Post by: Epson on February 05, 2009, 02:18:55 PM
Chana:   Next time the students build an anatomically correct snowman have them put a cystoscope in the penis, for badder cancer awareness week.

Sue:  This is an interesting question that I am pursuing an answer for.  I will let you guys know as soon as I find out.  Right know my dad is in the hospital again and I have been focusing my attention on his medical condition.

If I have to stop using Plaquenil for a month or two, no big deal to me, Sjogren's is a walk in the park compared to bladder cancer.

Thanks to all for your kind comments and prayers.

I must say that I am surprised that a new tumor sprouted up so quickly, I mean I know that there was a 65% chance or a tumor returning or a new one, but in three months :o
Title: Re: Glad it's over!!!!
Post by: Sjenny on February 05, 2009, 03:44:11 PM
Epson:

Actually (as Nathan reminded me) if Faustman's hypothesis is correct (and the research is promising, although too early in the process to tell), BCG would be an effective treatment for Sjs too.  Wouldn't it be great to slay the two dragons (stop cancer and cure Sjs) with one stone, so to speak?

Sue
Title: Re: Glad it's over!!!!
Post by: Epson on February 05, 2009, 04:34:46 PM
Well, they have been talking about curing cancer in mice for as long as I can remember and we still don't have a cure, but we have found ways to keep people alive through various treatments.

I am aware of Dr. Faustman's hypothesis, she is a hero among mice ;D
Title: Re: Glad it's over!!!!
Post by: eyeamdry on February 05, 2009, 07:34:21 PM
Epson, I'm sure you don't want any more "I know so and so."   But, I'm going to give you another.  Our good friends of 40 years, both husband and wife, had cancer at the same time about 20 years ago.  The wife had ovarian cancer, a particularly rough kind of cancer and the husband had bladder cancer.

Both are now in early 60's and living a good life.  Neither had any recurrence of their cancer.  I hope this tumor will be your last one.  Lucy
Title: Re: Glad it's over!!!!
Post by: Epson on February 05, 2009, 10:39:13 PM
Lucy,

It's always good to hear something encouraging and I know this must sound strange, but I have some of the worst luck, if there was no such thing as bad luck, I wouldn't have any luck at all.

The discouraging thing is to have another tumor so soon after the first one and all of the complication I have had related to the first operation.  Since late October I have not had a day when my urinary tract and bladder did not hurt and my back surgery that I had was a complete failure.  All of this has pissed off the Sjogren's monster and I can barely walk or use my right shoulder.

But other then that, things are great, can't wait for the next big blizzard, I need another 4 feet of snow piled up around the house ;D
Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 06, 2009, 06:33:35 AM
chana  roflmfaooooooooooooo  class! man needs to let his arse cheeks flap a bit eh ??:)

Epson   hang in there me friend, my friend said to me other  week" only the good die young and on that hypothesis you must be eternal "  cheeky bugger lolololol    ;D

Joking aside it aint an easy time, nbow way round that, and no one can know how you feel but you, but and yes there si always a but, it is treatbale, and fact it was detected again so quickly just means its getting picked up on quickly and getting treated all the more speedily, its wehn cancer teturns and no oen susptected it and it lies undetected, right now they know about it, its localised and its being treated aggressively , cancer never likes that , my friend`s niece had cancer tumour on the kidney , she fell over in the snow and when a massive bruise appeared they x rayed and found a tumour, she was 5 years old, they treated it and it came back, they treated it again, and while she did get alot of check ups, she is now last time i spoke to that friend at university doing mathmatics , its a traumatic thing to go through and your going to get scared, the treatment a nightmare ,and it IS an ordeal ,but so did she and she is here alive and well 14 years on 


T x



Title: Re: Glad it's over!!!!
Post by: Sandra on February 06, 2009, 07:32:23 AM
Epson, sorry for everything you have been through. My father was told about his bladder cancer "if there is a good cancer , this is the one to have". My Uncle, dad's brother also had the miserable problem too. Both of my dears died at the ripe old ages of 87 and 90 of life and age. This is the cancer to have and the BCG does work very well. My sister-in-law's mom also had/has it and with the BCG treatments is living a normal life. And just think how dangerous your weapon will be after each treatment (TB virus and all)......that's something to brag about....I do wish that each 3 month app will become easier, what you have been through sounds terrible  :'( there are different size cathiders, I know with dad they had to use smaller ones.....hope the sjs settles down too, it's hard to be positive or cordial when everything hurts! Sending all the best to you, Sandra
PS will try to keep my geese at home in the future
Title: Re: Glad it's over!!!!
Post by: Epson on February 06, 2009, 05:39:55 PM
Well, the doctor called today to answer my question about using Plaquinil and having BCG therapy.  After speaking with several pharmacists at the Cleveland Clinic, no one could tell him if it would be effective or safe to use BCG.

Guess we will be using plan B, an alternative medicine which it interchangeable with BCG, I think it is called Muteami Cell?
Title: Re: Glad it's over!!!!
Post by: irish on February 06, 2009, 09:27:49 PM
Epson, It is really a tough path that you are trodding on now and I will continue to keep you in my thoughts and prayers.

Also, sorry to hear that your dad is in the hospital. Like you need anymore to worry about right now.

I am wondering if your back surgery was unsuccessful because of the sjogrens---or maybe just a not so good doc???? Also, I am so sorry that you are suffering so darn much with the bladder pain. Is this from the cancer, the surgery or from sjogrens? The darn sjogrens affects the mucus membranes and I think it really makes them super sensitive. Have you been able to take pyridium? (the pill that turns the urine orange) Does ibuprofen help the bladder and urethre pain at all?? Sometimes with the inflammatory process ibuprofen will knock the pain down some. There is something about bladder and urethral pain that just makes a person feel like they are chewing on nails.

Will be glad when you can start your BCG treatments. I know that there are a lot more meds out there now. I know a guy about 64 that had cancer 3 times and would have his treatments(not BCG but some other new drug) and he has not had a relapse now for at least 5-8 years.

You have got me thinking about how good our generation has it. People used to die at 30 from pneumonia and now we get the priviledge of a longer live span so we can have all this new "crap".

If you want another 4 feet of snow around your house I can sympathize with you. I feel the same way. Let the snow stay high and keep the winds out. Our heating bills have been terrible and we really keep our thermastat on low. We got once of those Eden Pure heaters(the 1500 watt one). It was spendy but it one of the best investments we have ever made. I can't tell how much it has affected our electric bill because of all the new charges and increased taxes but I know that the furnace doesn't run as much during the day when it's on. Hubby sits with it facing him and his legs up on it at night like a footstool. It is so warm I don't know how he stands it but he is a skinny fellow. Take care. Irish ;D
Title: Re: Glad it's over!!!!
Post by: ruby52 on February 07, 2009, 05:39:12 AM
So sorry Epson.That is just to much bad luck for one person.I wish you the best.
                                                                           Ruby
Title: Re: Glad it's over!!!!
Post by: Linda196 on February 07, 2009, 05:47:03 AM
Speaking as an individual, who happens to live in Canada, I'm quite fond of Epson!  Sorry to get in on this discussion so late, but there are so many subjects here to reply to! I'm sorry to hear of your continuing trials, but it sounds like you are in the hands of skilled, knowledgable and caring doctors, who are willing to consider all possibilities in your care, as evidenced by their research into BCG and Plaquenil.

Cheese grater: no commnet (just a wince and deep cleansing breath).

Anatomically correct snowmen? Would that make melting weather the equivalent of impotence?

In the Canadian counterparts of "border cities" there are as many US cars as Canadian, just like the other side. In a number of these areas, emergency health care is available nearer on one side than the other, and speciality medical units serve both sides. Many people from one side work on the other side, and I've heard that employment in another country reduces the amount of income tax payable in some circumstances. Two areas near me, Woodstock, NB-Houlton, ME and St. Stephen, NB-Calais, ME, have a long history of cross border community, celebrating, working and living together. Things have changed, yes, because of more stringent measures at border crossings, but the people are still the same.

The Canada Goose (Branta Canadensis) is native to North America. It breeds in Canada and the northern United States in a variety of habitats. The Great Lakes region, both north (Canada) and south (US) of the lakes, maintains a very large population of Canada Geese. The breeding grounds were gradually pushed farther and farther north, because of population increases and hunting, until in the 1950's this beautiful bird was actually considered extinct.

They are creatures of embedded habit, and their nesting grounds and flight paths are well established, as are the migratory patterns, to the point that it's possible to predict their movement and presence most of the time. A fatal aircraft accident in 1995 near Elmandorf AFB, Alaska, resulted in efforts to relocate, modify or destroy nesting sites in an effort to protect aircraft flight paths.

My compliments to the highly skilled and experienced Pilot, Capt Sullenberg, who's expertise prevented great tragedy in the Hudson River crash. Last I heard, they were still in the "suspecting" phase, and hadn't totally faulted a flock of Canada Geese for the crash, but that may have changed.

As to the cold temperatures, sorry, you're on your own! Yesterday it was just 2oC, (35.6oF) and right now its about -20oC (-4oF) here (in my part of Canada), and when it gets colder, we blame cold air from the North Atlantic (out west they blame Alaska!) I guess no one is willing to admit that weather is just what it's going to be, no one's fault!

I'd love to have 4 feet of snow around my house, since I currently have about 7, and can't see the road from my front windows :-\

Title: Re: Glad it's over!!!!
Post by: Epson on February 07, 2009, 10:55:49 AM
Linda,

I had not heard anything from you in a long time, so I knew my Canadian jokes would have to bring you out eventually.  Oh, you don't have to thank me for the warm temperatures that we sent up north.
Title: Re: Glad it's over!!!!
Post by: kimbo on February 08, 2009, 07:09:23 PM
Linda

When you show up, you are always such a wealth of information.  :) 

I believe the people of wikepedia and google might try and steal you away from us sjoggies here.  ;D

love kimbo
Title: Re: Glad it's over!!!!
Post by: susanep on February 08, 2009, 08:57:53 PM
Glad you are feeling better.

susanep :)
Title: Re: Glad it's over!!!!
Post by: Epson on February 12, 2009, 07:41:16 PM
It's never over my friends, now it's off to a nephrologists and an oncologist, more test, chemical bio therapy starts in about a week and oh yea, had to put my Dad in a hospice.

Thing don't get any better then that, do they ???
Title: Re: Glad it's over!!!!
Post by: genko_b on February 12, 2009, 07:48:27 PM
I guess you really do have to wait for the fat lady to sing, Epson. Perhaps they will let you pick the tune, anyway.

Genko
Title: Re: Glad it's over!!!!
Post by: BonusMom on February 12, 2009, 08:22:19 PM
Sorry about your dad, Epson and your medical challenges.
Title: Re: Glad it's over!!!!
Post by: irish on February 12, 2009, 08:27:41 PM
epson, Sorry about your Dad but I know you probably feel great relief knowing that he is where he is being taken good care of.

That was a good remark genko made---it ain't time for the fat lady to sing yet I guess. Heck if she is hanging around this website to sing she might as well go home. Hope all goes well with all your treatments. Will be thinking of you. Irish ;D
Title: Re: Glad it's over!!!!
Post by: kimbo on February 12, 2009, 08:34:42 PM
Epson, I am sorry you have to go through all  this at same time as your fathers having illness also.

I hope you find ways to take a recess from the stress of it all.

  Whats a nephrologist ?

kimbo
Title: Re: Glad it's over!!!!
Post by: eyeamdry on February 12, 2009, 11:28:11 PM
Epson, perhaps a popsicle break now and then would make you feel better for a wee while?  Lucy
Title: Re: Glad it's over!!!!
Post by: wen.uk on February 13, 2009, 03:54:52 AM
Hi Epson
Sorry I'm only just catching up with your thread as not been around much due to few probs myself.  Sorry to hear your news, was going to say you must feel like you've been kicked in the teeth, more like kicked in the b***s in your case. 

Truly hope the treatment works for you, my thoughts and prayers are with you, and with your Dad also.

Love Wen x
Title: Re: Glad it's over!!!!
Post by: Epson on February 13, 2009, 06:00:36 AM
Kimbo,

A Nephrologist is a kidney specialist, the guy I am seeing is great, I couldn't ask for a better doctor.  My doctor told me that while SS can effect kidneys, it is doubtful that it would ever cause anyone to need dialysis.  That's good news.

Thanks to all, for your kind comments.  I just spent a day and a half in bed due to extreme fatigue and every joint and bone in my body is hurting, not to mention my Nether region.  This is all grinding me down, but we all go through this at one time or another.

Knowing that there will be more invasive procedures in the near future doesn't help.
Title: Re: Glad it's over!!!!
Post by: wednesday mc haggis on February 13, 2009, 09:09:26 AM
epson

i doubt anyones mood would be tip top in your situation, thoughts are with you, hang in there buddy we need you :)

Wen  hope your shingles is easing, let us know how your doing, thoughts with you too

T x