Author Topic: Getting Through Chemo  (Read 3636 times)

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Offline junebug72

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Getting Through Chemo
« on: September 21, 2013, 07:33:07 AM »
So I had my 2nd treatment Monday and I've just about had it.  I called them on Wednesday and said I really don't want to finish.  The staff there makes me feel like they don't trust me.  When she pushed that needle in my port I felt so violated it triggered my PTSD.  Now I really don't ever want to step foot back in that place again. Just thinking about it causes some serious anxiety.

I got thrush mouth real bad again and I can't get this nasty taste out of my mouth.

The e-cig has helped a lot with the smoking.  I still haven't given up the morning and after meal smokes but I'm doing good for me.

I am very discouraged right now I need Traveler.  :'(
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline Traveler

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Re: Getting Through Chemo
« Reply #1 on: September 21, 2013, 04:01:05 PM »
I've been trying to reply all afternoon, and keep getting an error.
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Offline Traveler

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Re: Getting Through Chemo
« Reply #2 on: September 21, 2013, 04:04:02 PM »
Oh, sweetie, I'm so very sorry you're having such a hard time of it.  :( I'm still trying to post my reply, but it seems to only let me post a very short note. :(
If we ever travel thousands of light years to a planet inhabited by intelligent life, let's just make patterns in their crops and leave.

Offline Traveler

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Re: Getting Through Chemo
« Reply #3 on: September 21, 2013, 05:15:53 PM »
There are several things that helped me with my anxiety. First and foremost, ask your doctor if there's medication that might help you. My oncologist gave me a prescription for diazepam. She said to take one before I left home, and another when I arrived at the cancer center. It definitely helped.

I also like to pretend. During stressful procedures I sometimes pretend that I'm scuba diving. I close my eyes and tell the doctor or nurse what I'm doing, and ask them not to talk with me unless they have to, so as to let my imagination sweep me away from the procedure.

If you have anyone in your life who you find cheerful and/or calm, ask them to come with you. Let them hold your hand, or look into your eyes, or whatever it will take to distract you.

You can also get a numbing agent for the skin over your port. Most people used it. There is also a numbing cream you can get from the oncologist. As I recall, they said to put that on some period of time before you go in. They can also give you a shot, although of course that's still a stick, though a smaller one.

In your case, perhaps prayer of some kind will help. Start well before you go in, with requests for calm and peace and courage. Ask, in your imagination, for a strong supporter. I sometimes imagine a lion walking beside me, lending me his strength and courage. Or imagine an eagle flying above you, or a gentle baby animal that you are protecting. The mind is a powerful and amazing thing. Let it work for you.

I will be in NC within the next week or so. Perhaps once I get settled in, and through opening weekend, we can get together to talk.
If we ever travel thousands of light years to a planet inhabited by intelligent life, let's just make patterns in their crops and leave.

Offline junebug72

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Re: Getting Through Chemo
« Reply #4 on: September 22, 2013, 04:45:02 AM »
It would be nice to finally meet.  I'm very seriously thinking about only taking 1 more treatment.  The feeling of distrust started over the ativan they give me for "nausea".  I had been taking 2 mg and they gave me 1 mg to start my chemo.  Needless to say they were ineffective unless I took 2.  Apparently I have to see a psychiatrist to get those kinds of drugs.  I can't catch a break.  My unemployment runs out in a couple of weeks and I just don't know how I'm going to make it.  I want to apply for disability but it can take up to 2 years to get approved.  i'm feeling very screwed about right now.  At least my son is grown and making his own way. 

I really thank you for your support and encouragement.
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline Nick

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Re: Getting Through Chemo
« Reply #5 on: September 22, 2013, 10:17:41 AM »
A good example why our health care system needs to be a universal system.
Yo, put that in your pipe and smoke it.  Quit ragging on my Lord.

Tide goes in, tide goes out !!!

Offline Jag

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Re: Getting Through Chemo
« Reply #6 on: September 22, 2013, 11:12:23 AM »
Aw crap sweetie, this just sucks. I've got nothing useful to offer, but you are in my thoughts often. Hang in there and accept whatever help presents itself.
My tolerance for BS is limited, and I use up most of it IRL.

Offline Traveler

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Re: Getting Through Chemo
« Reply #7 on: September 22, 2013, 11:56:38 AM »
Yeah, the anti-nausea drugs never did me much good.

My thoughts are these. It is a pain in the ass. It hurts. It sucks. Pick your negative description, and it applies to chemo. BUT, chemo is temporary. It eventually ends. Death is permanent. I feel great now. My hair is probably longer than its ever been before. I have my sense of taste back, I'm never nauseated anymore, and no one is sticking needles into an alien contraption in my chest. I'm ALIVE!!! I'm (relatively) HEALTHY!!! And I've learned so very much about myself. Would I do it again? Damn right I would. It would suck, it would terrify me, and I'd hate every minute of it. But it saves lives.

You know what was my greatest worry during treatment? Money. Yup, money. Our health care system sucks perhaps worse than cancer. I had insurance, but the out-of-pocket was astronomical. My mom helped me out ... thank goodness for moms with healthy savings accounts. I worried more about money than I did about my treatments. How sick is that?

I don't know what to tell you, except that I hope you will choose to fight for your life. I know its hard ... trust me, I know. But you CAN get through it, and years from now, when you're alive, admiring a sunrise, or talking with a dear friend, you'll be glad you did.
If we ever travel thousands of light years to a planet inhabited by intelligent life, let's just make patterns in their crops and leave.

Offline LoriPinkAngel

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Re: Getting Through Chemo
« Reply #8 on: September 22, 2013, 09:31:15 PM »
I'm sorry you are going through so much crap.  I am shocked that your chemo center doesn't some type of some support team to help you deal with these type of things.  I would think it would be part of the treatment.  Ati-van (Lor-aze-pam) is not for nausea.  It is for mild to moderate anxiety.  They should be giving you Zofran (Odansetron) for nausea.  You should be getting Xan-ax (Al-prazo-lam) or Dia-ze-pam (Val-ium) for moderate to severe anxiety.  You also should have a mouthwash with Nystatin to reduce the thrush.  The anti-anxiety meds do need to be prescribed by a psychiatrist but the oncologist should be able to give you the Zofran and the mouthwash.  They should give you 4%  Lidocaine cream for your port site.  You should be able to apply for Temporary Disability which should take 3-4 months rather than 2 years.  Stopping Chemo because of the side effects is not a good idea.  It has a job to do.  I hope things start looking up for you.  (Ignore the dashes, they are to keep from being forbidden)
It doesn't make sense to let go of something you've had for so long.  But it also doesn't make sense to hold on when there's actually nothing there.

Offline junebug72

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Re: Getting Through Chemo
« Reply #9 on: September 23, 2013, 02:54:13 AM »
I know I can't quit chemo but I want to.  I've tried so hard to stay positive and I'm so damn mad that the very people telling me how important it is are the very people that brought me down.  That and I have to say money.  Part of the reason I want to quit is so I can just go back to work, if I can find a job.  My sweet can do it alone but I don't want her to.  Christmas is almost here. 

I had a good pep talk from TR and Wes, my son, yesterday too.  There's no way I'm quitting.  I just need anxiety meds.   :o

LP your knowledge of medications is so useful.  Thanks so much.
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline wright

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Re: Getting Through Chemo
« Reply #10 on: September 23, 2013, 11:53:03 AM »
So sorry it's so stressful for you, junebug. Traveler and Lori have given some excellent advice. I hope you and Trav can meet; she's clearly a strong, empathic survivor.

I know it probably doesn't seem so to you, but what I get from reading your posts here is a feeling of slow, relentless strength behind your anxiety and pain. Like the pressure that drives a shoot through hard soil up to the light. All the hardship you've endured is further proof of your determination to endure this passing, transient difficulty to reclaim the health and life that is already yours.

You've made your choice, and you will see it through.
Live a good life... If there are no gods, then you will be gone, but will have lived a noble life that will live on in the memories of your loved ones. I am not afraid.
--Marcus Aurelius

Offline Nick

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Re: Getting Through Chemo
« Reply #11 on: September 25, 2013, 10:58:24 AM »
Junebug, you stated at one time that you did not have health insurance.  You also recently stated that your finances were not good.  With the new healthcare coming on line Oct. 1st and kicking in Jan 1st, you should at least look at your options.  Go to WWW.healthcare.gov / find your state / put in your info / and see how it stacks up for you.  You can do it now for a ball park figure to play around with.  The government will subsidies part of it if your income qualifies.  Even after you get threw your current situation you will probably need follow up visits and maybe further treatments.  Part of the healthcare act is not being able to turn you down for a pre existing condition.

Do yourself a favor.  You really need to get on this program if at all possible. 

Oh, and remember to thank Ted Cruz and the GOP for trying to take this option away from you.
« Last Edit: September 25, 2013, 11:30:13 AM by Nick »
Yo, put that in your pipe and smoke it.  Quit ragging on my Lord.

Tide goes in, tide goes out !!!

Offline carstensenscott

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Re: Getting Through Chemo
« Reply #12 on: September 25, 2013, 08:58:12 PM »
Lame and sorry. Yesterday was my sweets one year from first chemo.....lame.

Hang in there lady.

Love.

Offline junebug72

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Re: Getting Through Chemo
« Reply #13 on: September 26, 2013, 11:43:56 AM »
Nick thanks I will check it out.

car not lame at all.  Thanks for the thought.

Love
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline junebug72

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Re: Getting Through Chemo
« Reply #14 on: September 30, 2013, 04:39:20 AM »
Well I saw a Lyndsey Graham ad on TV last night and he is definitely male and a liar.  I was really appalled at his dishonest ad, REALLY. 

I'm having a much better week this week.  If it wasn't for the hair loss I wouldn't even know that I'm having chemo at this time.  I'm so thankful for the 21 day schedule I'm on.  My heart breaks even more now when I think of a child having to endure this treatment. 

My honey caught a viral crud at work and so far I have remarkably avoided the infection.  She made a pallet in the floor to avoid getting me sick and I can't say that I've ever felt so loved.  I am truly blessed.  My son had a head cold and I dodged that bullet too.  Some friends came by to give me a hope bag full of goodies and an inspirational card.  It was very sweet.  Dang I'm hungry this morning.  That don't usually hit until 7/8 am.  Anyhow, 2 down 4 to go and I hope I don't get that darn thrush again.  I'm going to ask about the magic rinse cause that stuff I've been using taste like crap for 5 days.  It is hard to even get my much needed water down which causes it's own set of problems.

I guess I'm going to have to deal with the anxiety because I'm not going back to that nasty place I went to Friday.  There is not even a restroom in the lobby to wash my hands.  The place is way too small for the amount of people they service.  People coughing all around me it was awful.  There was this 1 guy there who had been cutting himself, I feel so very sorry for cutters.  He showed me his scars.  They started at the bottom of his legs and went as far up as he could pull his pants leg.  I gave him my chair so he would come inside and during the break we struck up a conversation and when I introduced myself he informed me that was his late mother's name.  I can't stop thinking about this young man hoping this place can help him.

I will enjoy this week; next Monday is #3 halfway mark,  Yee haw!!!
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline William

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Re: Getting Through Chemo
« Reply #15 on: September 30, 2013, 04:51:46 AM »
I will enjoy this week; next Monday is #3 halfway mark,  Yee haw!!!

Amazing attitude :)
Work with those chemicals Junebug72, working together you have the best chance - the science says so  ;)
Git mit uns

Offline Traveler

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Re: Getting Through Chemo
« Reply #16 on: September 30, 2013, 10:30:03 AM »
Wonderful news! Your positive attitude really shines through your note.  :)
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Offline neopagan

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Re: Getting Through Chemo
« Reply #17 on: September 30, 2013, 10:53:09 AM »
JB, so glad to see things are starting to turn for the better for you.  Good attitude, too.  Your family seems to be coming through as well - best of luck to you.

(Ignore L. Graham - he could cause brain cells to die  :o )
If xian hell really exists, the stench of the burning billions of us should be a constant, putrid reminder to the handful of heavenward xians how loving your god is.  - neopagan

Offline LoriPinkAngel

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Re: Getting Through Chemo
« Reply #18 on: September 30, 2013, 12:43:02 PM »
Posted by: junebug72
« on: Today at 04:39:20 AM »

Quote
It is hard to even get my much needed water down which causes it's own set of problems.

There are some other ways to increase your hydration if you are having difficulty taking in water.  Obviously any other non-caffeinated liquid helps.  Also any foods that "melt" -- ice cream, yogurt, jello, pudding.  Ice pops are great and also may relieve mouth pain.  Juicy fruits like pears, melons. anything that runs down your face, although citrus may be irritating if you have mouth sores.  Don't forget soups and broths also count.

If your partner is already having symptoms of a viral infection she is probably past the infectious/contagious stage.  Check with the MD to be sure.

The best way to avoid the colds and what-not is for you and everyone around you to wash your hands frequently and keep hand sanitizer handy for when you go out.  Also sanitize phones before you use them.

I assume you went to a Mental Health Clinic of some sort on Friday.  You didn't mention whether you had any contact with any professionals there.  I can't advise you whether to give that place another try; you have to decide based on your experience.  But this may make you go "hmmm."  Is it possible that the interaction you had with that "cutter" is the only positive interaction that man had that day? 

I'm glad things seem to be looking up for you.  I admire your ability to find the "yee haw" in a most difficult situation.    ;D
It doesn't make sense to let go of something you've had for so long.  But it also doesn't make sense to hold on when there's actually nothing there.

Offline junebug72

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Re: Getting Through Chemo
« Reply #19 on: October 01, 2013, 07:18:57 AM »
Thanks y'all. 

LPA I appreciate your professional advice so much.  I think broth will probably work well for me.  The reason I'm having trouble putting anything in my mouth is the thrush mouth so it can't be a sweet.  I've got some sugar free peppermint candies that help with the nasty taste in my mouth but food and even water tastes so bad.  I was very aggressive with the salt water rinse this last round but I was over confident in that I had medication to take and I cheated on the sweet in my coffee.  I will not make that same mistake this time a round.  Nothing but water and savory for this gal next week.

I will seriously consider your advice regarding the mental health facility.  The main reason why is because of the filth.  It's a filthy place and I have a compromised immune system which I know you are aware of.  I really hope the young man had a positive interaction with the staff at that clinic.  They seemed to have a special interest in him above the rest of us.  Let me explain the rest of us.  They took like 11 people into a small office and had us filling out a bunch of paper work I could have easily filled out on my own.  I feel like admitting you need help is a private matter and I did not appreciate being rounded up like a herd of cattle. 

I could use professional help right now but just so you know part of my PTSD was a result of a stay in a juvenile facility when I was 13 over a suicide threat; not attempt.  My mother had come to visit on Christmas day and informed me that she did not believe me about her boyfriend raping me.  I was devastated to say the least.  That night I spent strapped to a gurney on some serious HALDOL just for saying something stupid like teenagers do.  I'll never forget exactly what I said.  I had a roommate and I pointed out a flaw in the security at the facility I was in.  I had a cross necklace that they did not remove and it had very sharp points on it.  I told my roommate that if they were so worried about my safety why didn't they take my sharp necklace.  I went through a couple of weeks of hell for that remark!!!  My childhood is full of sad stories I've been fighting my whole life through; even now I still struggle with self esteem and I think I have a victim complex.  I don't take no crap.  I defend that little girl with all that I have in me. 

I'm going to check on you now.  I hope your doing better than awesome!!!
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline wright

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Re: Getting Through Chemo
« Reply #20 on: October 02, 2013, 12:35:15 PM »
junebug, so glad you are proving so strong and persevering through this. What steel and humor you show; a fine example of human character enduring the acid test. And in the midst of such stress, to have empathy for someone else; another sign you're doing well, I think.

Thanks for sharing that background with us. It goes a way to explaining your present strength, that it has that foundation to grow from. You took pain at an early age and turned it into a strong place to stand. You go, woman. All the way, up and out of this present shadow.
Live a good life... If there are no gods, then you will be gone, but will have lived a noble life that will live on in the memories of your loved ones. I am not afraid.
--Marcus Aurelius

Offline junebug72

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Re: Getting Through Chemo
« Reply #21 on: October 02, 2013, 12:48:53 PM »
^^I always look forward to your positive and inspiring words.  Thanks. 
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline junebug72

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Re: Getting Through Chemo
« Reply #22 on: October 07, 2013, 04:05:54 AM »
Treatment #3 today.  That's my halfway marker 3 to go!!! 

I really wish more members would wish me well.  Is it lack of belief that makes them not care about a fellow human going through cancer.  I have to try and let this not bother me.  I'm sure the absent members have a good reason for not supporting me in my time of need.  :(
Belief in a cruel God makes a cruel man.
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Offline Traveler

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Re: Getting Through Chemo
« Reply #23 on: October 07, 2013, 07:05:37 AM »
Hugs, and I hope today's treatment goes well!!!

As for lack of support, please try to remember that people might not even be reading this section, or might not know what to say, or might have only the briefest of moments online. Today is the first time in a week where I've really had time to breath, being swamped with other things, and the main reason that this thread jumps out at me over the dozens of others I'd like to catch up on is that we share the struggle that is cancer.

I hope you won't let that discourage you.  :)

Looking forward to meeting up in person ...
If we ever travel thousands of light years to a planet inhabited by intelligent life, let's just make patterns in their crops and leave.

Online jynnan tonnix

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Re: Getting Through Chemo
« Reply #24 on: October 07, 2013, 10:17:15 AM »
I care, Junebug...sorry not to have been more active in this, as well as other threads by other members who are dealing with difficulties in their lives. Guess I'm just one of those people who have a tendency to keep quiet when they don't quite know what to say or how to say it. That's something I know I have to work on, in real life as well.

Offline Astreja

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Re: Getting Through Chemo
« Reply #25 on: October 08, 2013, 10:05:36 PM »
Thinking about you, JB -- Nothing really to add to what everyone else has said, but here's a (((hug))). 
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Offline junebug72

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Re: Getting Through Chemo
« Reply #26 on: October 09, 2013, 04:16:45 AM »
^^ THANKS GODDESS^^ (((hugs))) back. 
Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline junebug72

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Re: Getting Through Chemo
« Reply #27 on: October 10, 2013, 04:39:28 AM »
Yelp Nam got it right.  I'm an attention whore, bitch lying about having cancer.  I guess I won't be needing to go back to the DR anytime soon.  Won't need anymore chemo because I don't have cancer.  I have been healed by the word of Nam. :laugh: :laugh: :laugh:

Belief in a cruel God makes a cruel man.
Thomas Paine

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Offline Traveler

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Re: Getting Through Chemo
« Reply #28 on: October 10, 2013, 09:57:35 PM »
Well, I've now spoken to Junebug on the phone, so somebody is real.  ;D
If we ever travel thousands of light years to a planet inhabited by intelligent life, let's just make patterns in their crops and leave.