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Sjogrens Topics => Living With Sjogren's => Topic started by: angeldancer on November 19, 2013, 11:42:07 AM

Title: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 19, 2013, 11:42:07 AM
Well they said the cancer is in my rectum which makes it more difficult to treat.  I need to start chemo and radiation as soon as possible but don't want to do it without my daughter being here.  My autistic son does not know how to care for me and I will need care from all my readings with what chemo and radiation do to you before surgery.  I need to gain weight fast because weight will drop quick with treatments.  As I am typing this I am nauseas, vision blurry, past fatigue, and getting ready to take an ambient to sleep the afternoon away.  I decided to send my son away for awhile so he doesn't have to constantly see me in this condition.  I know it is going to make him quite sad but I don't know what else to do.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Skylar on November 19, 2013, 12:19:33 PM
Angeldancer, I'm so sorry. (((HUGS)))
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Velcro on November 19, 2013, 12:21:34 PM
So sorry angeldancer.  Will your daughter be willing/able to come help out for awhile?
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 19, 2013, 12:55:33 PM
SKYLAR AND VELCRO:

My daughter hasn't earned any time off with her job yet.  She wants to visit but can only fly in for weekends.  I just told my son that he will have to go to her and he is so depressed.  What a situation to be in.  No real answers and my only people to converse with is on this forum.  Thanks for hellping me to come up with ideas.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Katybarstool on November 19, 2013, 01:01:38 PM
Angel

I'm so sorry to hear of your diagnosis. Please know that we are here whenever you need to talk.

Kathyx
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: lighthouse33 on November 19, 2013, 01:32:32 PM
I'm sorry that you and your family are facing this difficult time. 

I compiled a list of cancer forms and their hyperlinks listed below.  Maybe one of these sites will offer you some help and support. 

Feel free to talk to us anytime, we are hear for you.

I live with my parents.  Since 2010, my dad was diagnosed with lung cancer, had major heart surgery, a recurrence of the lung cancer in October of 2012.

My mom had a recurrence of her cervical cancer in 2011, surgery, an ostomy bag, four spinal factures, a hip fracture last year, a diagnosis of COPD in 2011 and put on oxygen 24/7. 

It is indeed a rough road. 

The Cancer Forums:

A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others

http://www.cancerforums.net/search.php?searchid=1097987

 Health Boards Cancer: Colon Message Board

http://www.healthboards.com/boards/cancer-colon/

BEST COLORECTAL CANCER WEBSITES

A guide to the best and most popular English-language colorectal cancer websites for information and support I could find.

http://www.bestcancersites.com/colorectal/

http://www.ontopofcancer.org/colon_cancer_support_group.php


Title: Re: Cancer and Sjogrens Update Ugh!
Post by: finallyadx on November 19, 2013, 01:45:40 PM
Angeldancer - so very sorry to hear about your cancer.  Is there a way you can get a nurse or a care person to come in and care for you and your son after the chemo?  A visiting nurse or something like that?  It just seems you will need more care than just on the weekends. 

My sister has had cancer twice (just found it again in her lung-3rd time) but the first two times she had chemo and she needed my mom (who has since passed) to help care for her along with a visiting nurse. 

Sending prayers your way.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Chris on November 19, 2013, 01:50:15 PM
Praying for you....
Hugs
Chris
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: ohiolady on November 19, 2013, 02:03:42 PM
Angel,

I am so very sorry for all you are going through.  Angel, it is okay to have your son go and be with your daughter.  You really need to take care of yourself now and give yourself some time away from stress.  You need to be able to sit and stare at the walls for awhile and not have to do anything.  A cancer diagnosis is a tough pill to swallow.  Hopefully, this will help your son to grow as a person as well.

My neighbor had rectal cancer 7 years ago and a friend of ours had it a few years ago as well.  No doubt you will have some tough days ahead but they are both okay now and I am hoping this for you too.

Please check into the visiting nurses and see if this is a covered benefit.  Take care of you now. 

Hugs,

Anna
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Cricket on November 19, 2013, 02:18:38 PM
Angel

I have Lymphoma, I realize that it is different than yours, but the chemo has come a long way.  I am not saying you won't need help considering your son, but now the oncologist give all sorts of meds before chemo and for at home.  I had to initially have 8 rounds once a week, now I have to have three years of it, once every eight weeks.  I get one on Christmas Eve and that will finish one year, two to go!  I am always very tired, but for about two weeks after I am exhausted.  Need to be careful to stay away from groups during winter, colds and flu, as the immune system takes a nose dive.  Getting treatment as soon as possible would be in your best interest.  Sending hugs and good thoughts.
Cricket~
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 19, 2013, 03:17:13 PM
Thank you Cricket.  You are right!  Treatments need to begin asap for me to try to beat this thing.  Just talked to my son and trying to instill some Godly principles.  Let's get this battle on.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Ripvanann on November 19, 2013, 03:53:41 PM
Angel, my heart aches for you. I'm so sorry. It was encouraging to read Anna's post about the two people she knows who have beat this type of cancer.

How old is your son? How severe is he? Our oldest will be 13 in a couple of weeks and by God's grace, he's now a very high functioning autistic child. Wasn't always so, but he's proven that human prognostication is flawed. At any rate, he has watched me go through near death experiences with this illness, always knowing that every day is a gift from the Lord. He probably has understood this better than anyone.

Suffering in front of our children can be one of the most difficult things to do. I understand your sending him away for a while. I have to say that I can see God's hand in all of this and it has grown all of our faith in unfathomable ways. "If God is for us, who can be against us?"

Grace, peace and blessings to you!
~Andrea
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: susanep on November 19, 2013, 03:55:12 PM
Bless your heart. So many mountains people have to go through at times. I have prayed for you, and all others going through cancer, and everything else too.

Loving and caring for each other is the best thing we all can do. Take one day at a time, and things will get better in time.

I don't know how you or the others feel. I only know that all of you are in my prayers, and my heart is with you.
 
I do agree that medicine has come a long way these days, so I hope that is a help.

Hugs (big arms around you)
susanep
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: nannysbaby on November 19, 2013, 04:38:31 PM
All my prayers are with you Angel.  God comforts all of us and he will comfort you.

Hugs,
Nancy
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Velcro on November 20, 2013, 07:09:15 AM
Yes, if you have insurance, can you check to see about home health care?  Also, at my last Scleroderma support group meeting, we had a guest speaker that runs a business of caretakers.  This is in addition to medical.  They don't do any medical stuff, but will help you bathe, dress, cook meals, light housekeeping, drive to Doctors appointments, just sit with you, etc.  I thought they were very reasonably priced at $17 an hour and could see if I ever needed something like that, it would be worth having them come a few hours a week.  Now this one is a very good one, with all their employees bonded, background checked...etc.  Maybe you could check in your area to see if you have anything like that?  He had suggested since my insurance covers home health care, that IF I ever got in a situation, that home health would come on M-W-F, and I could have them come for a couple of hours on one or two of the other days?  Something along that line is what most people do.

Sorry, I don't know your insurance or financial situation to know if that's even possible for you.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: bjnc on November 20, 2013, 02:21:40 PM
Praying for you and hoping you can get some kind of help with Home Health or another avenue.  Also, do you have a church group for friends who could give you support?

Becky
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: LucyD on November 21, 2013, 06:24:21 PM
Angeldancer, sending healing thoughts and prayers. I so hope you will have everything worked out for your care and support.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 22, 2013, 01:15:12 AM
Thanking everyone for their thoughts and prayers.  Chemo is coming soon.  Staying prayerful.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: gurs on November 22, 2013, 04:12:15 AM
Bless all of you dealing with cancer and Sjogrens...I cant even imagine!!!! stay strong.

Gursie
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 23, 2013, 07:36:24 AM
Thanks gurs!
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Piebird on November 24, 2013, 07:48:44 PM
Thinking of you.

I am raising a 9 year old autistic grand daughter. Not sure what your son is like or the laws and insurance there, I am Canadian. Is it possible for you to get in home support for him? or a day program for him? or maybe place him in foster care? or a group home? while you are dealing with the cancer?

<3 <3 <3

My advice is to not feel guilty about putting yourself first in the short term so that you can be there for him in the long term.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 24, 2013, 09:41:40 PM
Piebird I am going to look into a day program for him.  The access bus can pick him up for 3 bucks each way and get him there.  Its a process.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Nat on November 25, 2013, 05:40:42 PM
Hi angeldancer~

I saw that lighthouse33 recommended you check out the cancerforums.net website. I just wanted to let you know I made some posts awhile back that showed why patients with autoimmune disease are at an increased risk for developing cancer. I think the posts were very well received.

If you go on the forum, my thread is under "Cancer News" and is entitled "Breast Cancer and Autoimmune Disease." The information on the thread does apply to all cancers, not just breast cancer. I hope you find the information helpful.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on November 25, 2013, 07:36:03 PM
Thank you Nat.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: SjoGirl on November 27, 2013, 08:02:47 AM
Angeldancer, you and some others may find a book I just started reading of interest and maybe some comfort. It's called Falling Upward and provides a perspective on dealing with failure, loss, and "falling." The author, who I believe is a priest, suggests that falling proceeds rising. I'm finding his perspective helpful as I consider much loss that I've dealt with over the last several years.

Warning that the book does take a Christian perspective, though I don't find it preachy and the advice could well be found in any book without the Bible references.

Prayers continue to be with you Angeldancer.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: irish on November 27, 2013, 09:46:12 PM
I am so sorry to hear of your diagnosis and the battle that is to come. My prayer is for healing for you and for the strength to del with family, etc. as things arise. It is amazing what the human body and spirit can endure with prayers and support of others. Irish
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on December 05, 2013, 10:31:54 AM
Thanks Irish and Sjogirl.  I will try to get that book.  There is not much money anymore.  Living below the poverty line now but grateful to have something to buy food with.  I have fallen down but I have not given up.  I will give everyone a big smile and a grateful thanks for the prayers.  :-*  :)
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: SjoGirl on December 06, 2013, 09:27:32 AM
Oh Angeldancer, I am so sorry to hear about your situation. You continue to be in my prayers.

I don't know your age, but HomeInstead Senior Care does a great job in our area of providing in home assistance. Comfort Keepers is another.

God bless.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on December 06, 2013, 10:26:51 AM
 :)  :-* 
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: eye2dry on December 06, 2013, 10:40:34 AM
Angeldancer

I am very sorry to read about the fight you have ahead of you.

Your worries about your son on top of this is extra stressful for you.

Please take advantage of all help offered you in your area.

I will be thinking of you and praying for your win over this.

eye2dry
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: slccom on December 06, 2013, 12:01:33 PM
Your local library will bring books to the homebound, so you should ask them to bring it to you.

Hang in there -- you'll get though this.

Hugs, Sharon
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on December 07, 2013, 07:46:39 PM
Thanks sitcom.  I will call on Monday and try to see who can bring books to me.  That is an awesome suggestion.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: iabarbosa on May 06, 2014, 05:59:38 PM
How are you doing?  No recent posts from you

Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on May 06, 2014, 07:12:01 PM
Sorry for no update!  I was in the hospital unfortunately.  I am out and have started chemo.  I just need a lot of rest to get through the side effects.  i will be ok.  I am prayerful.  Thank you all for thinking about me.   The new cancer center seems to be really caring and watch you like a hawk.  They won't give treatments if they think it is detrimental to you and I like that.  Ihave to have shots build my blood count because with Sjotgrens its already low and chemo makes it drop even lower.  God bless all of us on this journey.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: machenza on May 06, 2014, 07:34:15 PM
Dearest Angeldancer,

You are a brave woman and you will get through this. I saw that you had the first chemo, and this is the right thing to do, and the sooner you start the better.

I am praying for you,

Nellie
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: irish on May 06, 2014, 09:33:31 PM
God be with you are you travel this road. May your strength not fail you too much and hopefully the side effects will not get you down. God Bless. Irish
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: gemini052377 on May 06, 2014, 10:27:45 PM
Angeldancer, keeping you in my thoughts. Please know you do not walk this journey alone, we will send you strength, peace and hugs. Prayers for little to no side effects with lots of healing.

Take care,
Mary
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Thea on May 06, 2014, 10:53:42 PM
I'm new to this board, but reading this thread I just have to send you my hugs and healing thoughts. It's a hard path you've been given, but I believe you have the strength to walk it.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: susanep on May 06, 2014, 11:23:33 PM
You are still in my prayers. I was glad to see you post. As you are able too let us know how you are, and if there is anything we can do.

susanep
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: quietdynamics on May 07, 2014, 04:53:35 AM


So good to hear from you. And that the medical team is being cautious and caring.
Hope you are relaxing as best you can, listening to good music. Keeping busy with postive things in the face of such adversity.

I used to have the mantra: I dance in the face of adversity.. well sometimes I have to do toe tapping now.  ;)
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: cccourt1942 on May 07, 2014, 05:48:48 AM
This thread was before I joined this forum.  Oh my goodness.  This plight of Angel along with the wonderful sentiments and messages filled with resources is overwhelming to me.  Angel:  You are blessed by this group's association to you.  The hard choices you have had to make.  Bless you and yours.

I hope by this time you have found  a "real" people group in your area so there are some others helping you.

I wish we were within a 15 mile radius and could help one another along the way. 

Hope you have a great day...which in turn will turn into another great day..and ultimate week-end!
ccc
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Cricket on May 08, 2014, 01:33:21 AM
You CAN do this, I have faith in you.

Stay away from people who are sick, I need to take my own advice.   I went to a baby shower and my cousin had a cold, it was just the end of one she said.  Did not kiss or touch or sit close, but I got bronchitis and three weeks later I had chemo, thought I would be alright.....NO!  Got a relasp of bronchitis, went back to doc and he said I have whooping cough, wonderful!  So my advice stay away from people even if they are a little sick.

Praying for you.  Cricket~
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: quietdynamics on May 08, 2014, 07:41:36 AM
Cricket .. sorry you picked up a 'bug'.
Even when grandaughter brought one home from school and it went through the home... I was selfish (joking) and stayed away from people .. not wanting to share.

And watch for those door knobs in public bathrooms.. really.
We wash our hands thoroughly .. then touch that ... Yuck.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on May 08, 2014, 07:26:15 PM
Thanks you guys.  I went today to have chemo unhooked or whatever they call it, and went into the restroom.  Yes, do not touch door knobs without tissue or hanky.  Thanks for saying I can do this and I got this.  Tonight I will put some music on and dance even if I can't stand.  Your words of encouragement helps so much.  I am trying not to cry and I know it will get easier but I got this.  Pain and all I got this.  You guys are so awesome and have made my lonely world so much better.  You are my family!
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: KRNLMBCH on May 09, 2014, 07:55:24 AM
I'm so sorry to hear what you are facing.  Thoughts and prayers are with you.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: quietdynamics on May 09, 2014, 08:45:49 AM

" I am trying not to cry ..."

Cry and let it out.. to make room for the good.
Like a plate that is full... get rid of the "stuff" ... and then fill it with the new free space with 'delights'

Repeat as necessary..

Listen to Vivialdi.. immerse. Do you have earplugs? Huge difference with music immersion.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: angeldancer on May 09, 2014, 09:20:25 AM
Quietdynamics?I have not listened to Vivaldi in a long time.  Thanks..excellent suggestion.  I know you say cry but it would be nice to stop.  I guess the emotions are so much.  But today will be Vivaldi and hot green tea.  Maybe I can get some avocado down and tomatoes.  Yummy? BTW when I saw i wasn't getting enough water down I did buy a cupcake and got two bottles of water down.  The cupcake masked the horrible taste that comes with chemo.

Blessings,
Angeldancer
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Pisces24 on May 09, 2014, 05:55:50 PM
I can understand horrible tastes when you are on chemo. I was on R-Chop 6 mos in 2012.

The weirdest thing with me was smell. I kept smellng what I can only describe as "maple syrup hot dogs". Ugh!  :P It would definitely put me off food at times.

I had trouble with weight during chemo so my dr "to the envy of one of my friends HaHa" told me to eat just anything. Didn't care what EAT!
I also had methotrexate shots which at onset gave me a bad headache. Dr told me increase caffeine so drink more pepsi and eat more chocolate.  I sure couldn't complain about my diet on chemo.

Good Luck with you!
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Pisces24 on May 09, 2014, 05:58:03 PM
OH.  Also, I was solo through my chemo treatments too. I have no family except 1st cousins many miles away. 
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: littleone on May 09, 2014, 09:23:25 PM
I wish we all lived closer,angel dancer. I am sending light bright littleone energy.   

PS do we have more access to these emoticons above? I need a group hug emoticon.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: stillinshockwithsjogrens on May 09, 2014, 10:32:20 PM
The beauty of this board!  I live close to Angeldancer!  When she feels well enough, we're going to meet.  Angeldancer, don't you hold back, I have a flexible schedule and can bring you anything you need, cupcakes, avocados, tomatoes, even if it's just companionship.  You're going through so much....and you are so beautiful!!!  You're not alone.  I'm 15 minutes away!  You're going to come through this and you'll need help.  Call on me. 

HUGS!
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Thea on May 10, 2014, 06:20:10 AM
Angel, take up StillinShock's offer. Allowing people to help is a gift you give them.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: Tivia on May 10, 2014, 07:49:58 AM
I hope you are feeling better Angel. You have been through the wringer in a short period of time. I would start talking to Stillinshock on the phone and get to know each other. Then if you are comfortable meet in person, some very close friendships can start this way. Maybe you can do things and talk about things other than sickness that will be positive in your lives and not dwell on the bad. I think we tend to focus too much on bad, and yes there is a alot of bad. But focusing on that alone can make the mind/body worse. It would be great to have a friend that shared in what your are going through, but at the same time you two could lift each other up and do things that take the focus off the illness.
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: iabarbosa on June 26, 2014, 06:46:25 PM
Angel,
I pray that you are improving.   I will have surgery for colorectal cancer in two weeks and you inspire me.
Sending lots of love
Title: Re: Cancer and Sjogrens Update Ugh!
Post by: susanep on June 26, 2014, 11:21:01 PM
I am praying for you angel. You are not alone even though it's easy to feel that way even when someone has family. Not always the family understand. You have someone reaching out to you, because you are special.  :) :) :)

Everyone here is special.

susanep :)