Mom is in excruciating pain

wanttofeelgood

My mother was hospitalized and diagnosed with perianal cancer a couple of weeks ago.  She has had it for years and we didn't know.  She has been in excruciating pain for about seven months.  She has received emergency Medicaid and has applied for disability.  She had an appointment with an oncologist last week who prescibed an opioid in liquid form because my mother has a medical condition where she can't swallow pills.  Before my mother got the Medicaid, a doctor at the hospital prescribed the liquid opioid.  The cost was manageable.  When I filled the prescription for the liquid opioid from the oncologist last week, this time with the Medicaid, the prescription went up almost $20.  I just found out yesterday from the pharmacy that Medicaid does not cover liquid opioids.  So now, with my mother feeling like she is on fire and in agonizing pain from the cancer, the pharmacy and the cancer office have filed a TAR (Treatment Authorization Request).  We have to wait around to see whether or not Medicaid will approve my mother's pain meds that she desperately needs.  It seems like everything is moving at a glacial pace.  I feel like I should be doing more but I don't know what to do.  My mother physically can't work.  I am an adult and live with her and our pets.  I have two retail jobs that don't pay a lot.  I sort of like one of the jobs but they don't give me a lot of hours.  We don't have family nearby or much of a support system at the moment.  Our family background has always been difficult.  My mother isn't getting out.  I don't drive.  I am still emotionally recovering from past abuse in my life and have always had an extremely hard time opening up to people.  My mom is rationing out her liquid opioid because of the cost and also taking liquid children's ibuprofen.  Mom is miserable.  She cries out in agony sometimes.  She's having a terrible time as I type this.  We still don't know what stage her cancer is.  It sounds like she needs chemo and radiation and maybe surgery.  She has another appointment next week, this time for a surgery consult.  I wish I could help my mother more with her pain.  I don't quite know what to do right now.  I feel terrible for us and everyone going through/who has gone through a similar situation.  I  can't  stress  enough  how much  pain  she is in right this second.

mp327

wanttofeelgood

I'm very sorry to hear of your mother's situation and sorry that I don't have any good advice for you.  It's good that she is going to see a surgeon next week.  Hopefully, that will get the ball rolling on staging and recommended treatment.  In the meantime, I hope she will get approval for the additional pain meds.  Please keep us posted.

wanttofeelgood

mp327 said:

wanttofeelgood

I'm very sorry to hear of your mother's situation and sorry that I don't have any good advice for you.  It's good that she is going to see a surgeon next week.  Hopefully, that will get the ball rolling on staging and recommended treatment.  In the meantime, I hope she will get approval for the additional pain meds.  Please keep us posted.

Thank you for your response. 

Thank you for your response.  I'm getting ready for work right now.  I've already heard her quietly moaning in pain today.  She got up and said this is affecting her mentally as well as physically.  I feel so overwhelmed.  I think I forgot to mention that the oncologist said during the appointment last week that she needs a PET scan and the receptionist told me afterwards that we have to wait three weeks for Medicaid to approve or deny it.  I'm afraid I'm going to lose my mom.  She's worried she won't live through the pain.  I'll definitely keep you posted.  I talk about this a little with my coworkers but I know we need to focus on our work and they have their own lives.  As scary as it has always been for me to open up, I need to talk to someone about this.  I feel kind of alone.  Thank you.

eihtak

wanttofeelgood said:

Thank you for your response. 

Thank you for your response.  I'm getting ready for work right now.  I've already heard her quietly moaning in pain today.  She got up and said this is affecting her mentally as well as physically.  I feel so overwhelmed.  I think I forgot to mention that the oncologist said during the appointment last week that she needs a PET scan and the receptionist told me afterwards that we have to wait three weeks for Medicaid to approve or deny it.  I'm afraid I'm going to lose my mom.  She's worried she won't live through the pain.  I'll definitely keep you posted.  I talk about this a little with my coworkers but I know we need to focus on our work and they have their own lives.  As scary as it has always been for me to open up, I need to talk to someone about this.  I feel kind of alone.  Thank you.

wantto feelgood...

I am so sorry for both your mother and yourself and will pray for some quick answers and help. I would suggest checking out some of the links on this site. On the left you can click Community Resources and Support Programs. I have not personally had the need to seek help through these but there could be something there for you. Also, my area has an oncology social worker (check with your moms doctor or nurse) and he or she may be able to offer some help in connecting with resources right in your area. The oncology social worker near me not only deals with the emotional toll this takes on the patient and caregiver but also helps to find things like funding for uncovered services. You may need to explain the urgency when speaking to anyone, but I just know there is help out there...its just a matter of connecting with it so don't quit!

Again, you'll be in my thoughts and prayers.

katheryn

Ohmy

I think all of us on this

I think all of us on this site can relate to that kind of pain.  I have been on both sides.  I suffered pain during my cancer treatment and recovery.  Nothing prepared me for what I would feel watching my mother suffer in the last few months.  Sometimes I think it is worse to be the care taker and watch a loved one suffer than to suffer in my own pain.  This experience has really helped me appreciate all my husband did for me during my cancer treatment.  I just read an article how it is sometimes cheaper to pay the price of a drug rather than the insurance copay.  This sounds like what may have happened when your mother went on Medicaid.  There are also many support groups on line to help you through this.

 

tanda

wanttofeelgood

I'm so sorry that because of alot of red tape your mother's pain management  treatment is delayed.  Hopefully her doctors will continue to press for a resolution 

I don't know anything about pain management, but I wonder if the meds can be delivered by an injection or a pain patch.  Years ago when my mother was suffering excrutiating pain, she was put on a fentynal patch which was very helpful.

wanttofeelgood

Thanks to everyone for their well wishes/comments

I have to get some sleep and get up in a few hours to continue my retail career.  I will spend more time/energy on this board/website.  I'm really busy right now.  Another long/exhausting day today.  Pain meds situation still complicated and it's now the weekend (and a holiday weekend to boot).  Bills to pay.  Good news is Mom is feeling a little better today.  She's still in pain of course.  We're both in touch with our anger at times and sometimes that can be a good thing.    I just wanted to take a moment to thank everyone who took the time to read my original post and everyone who commented.  It means so much to me.  Goodbye for now.  I'll be back.

Jane s

some ideas

Hi there, welcome to the nightmare world of cancer treatment.  I want to tell you that the flip side is taht there are a lot of resources out there to help. Since you have been dealt the cancer card, play it.

There should be a social worker at the oncology office or department, or least at the hospital, they are there to help you, reach out to them and see what services and/or financial help you can get.  There are volunteer groups who will bring you food, drive your mother to appointments, clean your house, all kinds of stuff.  You say she is now on medicaid, but it may not cover the pet scan, wtf.  She may be better off just getting regular insurance through the ACA.   For now, see if you can be billed for the copayments, and you can deal with them later.  Hospitals are usually good about setting up payment plans. 

Call your utilities and tell them your situation, they have programs for low income people.  Consider quitting one of your jobs, or taking family leave.  Go to your local welfare office, get help with paying for housing and/or food stamps.  

You say you don't have much family, do you have some trusted friends?  Co-workers?  Ask for help, believe me, people want to help you.  Cancer brings it out in people.  People you don't expect will show up.

Remember this is a temporary situation, but while it lasts things will be hard.  Do whatever you can to make it easy on yourself.  Take as much off your plate as possible.  And, take care of you first, so you can take care of her.  Your and her health are the most important things.   

good luck we are all rooting for you!

Jane

Msmoxie

Find a doctor with a heart and soul

Hello.  I am so sorry to hear about your Mother and the predicament she is currently in.  Your Mother has rights as a patient.  There are also patient advocates at the facilities where you are already going... if not find one to call and talk to asap.  Also.... I have been dealing with my late stage anal cancer for nearly a year now... without treatment / chemo / radiation... but Thank God I only occasionally have pain (primarily from spasms)... I had to ask my doctor for the muscle relaxer Flexaril... I was aware of it due to broken bones in my spine many years ago.  If the muscle spasms are causing the pain.. it will help IMMENSELY!!!  Especially after the doctors do any digital test and even the MRI.. I experience the painful spasms and bleeding for two to three days after these exams.  If you don't know about the pain muscle spasms can cause... I pray that this is helpful info.

Next... Talk to every doctor you see in the facility and if you have to go clear up to the CEO... do so!!  Sometimes the patient advocate is just there to make us go away quietly.  Your Mom has a right to pain management.  We currently have a 49 year old female friend in a Lakeland, FL hospital for more than a week now.  Had arrived by EMS with fluid build up on her lungs.  They actually had the nerve to take her off of the morphine for a few days.  THEY MAKE MISTAKES... but you must know as much as possible to help your MOM.  The boyfriend of our female friend is the only person there for her... they have the right to have her moved to another hospital if the hospital does not address her pain.  Nobody is lying in the hospital to get high for God's sake.  These cancers cause pain.  The pain should be managed.  Raise hell and jump over it until you get help for your MOM.  

Every procedure they do has side effects and potential complications.  The hospitals have the drugs on hand to handle the various pain levels.  Not every thing works for everybody.

I am really hoping that you find a doctor and/or nurses in there that have a heart and soul and help your MOM NOW!

My doctors... my primary and my radiation oncologist (even though he knows I am not accepting the chemo/radiation)  are totally good with helping me with palliative care.  

I also... here seven months post-diagnosis,,, just received a call about two weeks ago from a needs assessment nurse.  Only then did I find out my insurance (which is the Amerigroup for people like me who have no money)... covers even the cost of my incontinence supplies.  I have been buying them for seven months and it adds up to more than one hundred dollars a month for wipes and hydrogen and diapers, etc.   Most IMPORTANTLY... there is a nurse on call 24/7!!! 

I did not know that until the call I got so I am trying to spread the word.

Feel free to contact me if you would like privately or here on the discussion board.  I am late stage with tumors on both sphincters, tumors in my groin, a breast tumor and more so that is why I am taking the palliative approach.  

wanttofeelgood

At a standstill for now

Thanks to everyone reading and commenting/advising.  I still have PTSD/social phobia and still have a hard time dealing with people/expressing myself clearly, even through my mother's health crisis.  I frustrate myself at times.  Bear with me.  Medicaid approved the PET CT.  It was done over a week ago.  The oncologist's office said it confirms that my mother has anal and colon cancer (the doctor who did the biopsy at the hospital last month that diagnosed my mother's cancer in the first place said anal and rectal cancer) and that it doesn't appear to have spread but we won't know for sure until my mother has surgery.  I feel like they're not telling us the whole story.  Before the PET CT, my Mom had a consult with a surgeon.  The surgeon said that my mother needs a one loop ileostomy and possibly a colonoscopy if she is able to drink all that stuff you're supposed to drink the day before you have it or whatever it is.  My Mom has had a lot of GI problems for years.  Her cancer is a GI cancer.  Pain meds still an issue.  It took 3-4 WEEKS for the oncologist's office, the pharmacy, and Medicaid to get their acts together to submit and approve the TAR for my mother's liquid opioid.  After all that, someone at the pharmacy when I tried to fill the prescription casually told me that the TAR only covers one lousy bottle of medicine.  That my mother needs every week.  Thanks for nothing.  They cover my mother's medicine in pill form but not in liquid form.  I asked someone at Medicaid over the phone why they cover my Mom's medicine in pill form but not in liquid form and they wouldn't give me a real answer, just said some nonsense about doing another TAR, as if I have nothing else going on.  I can't and won't do that every week.  It's soul-sucking, deliberately I'm sure.  I don't have a lot of money but I've been on this website where you can print out/download a coupon and that can lower the cost of the meds, hopefully.  I hate this situation.  It's terrible to be diagnosed with cancer when you have next to no money.  I mean, no time is a good time for cancer.  I just feel especially ill-equipped to deal with this right now emotionally and financially.  But I don't have a choice.  I'm here.  Mom's my best friend and I'm terrified she's going to pass sooner or later from this.  The oncologist continues to prescribe the pain meds.  We're feeling pressure from the oncologist's office to get the ileostomy ASAP.  My Mom and I are WELL aware that she needs medical intervention.  She has a million questions that she doesn't feel are getting answered.  I know she got the phone number to a patient advocate recently and called but they were closed.  It's still the weekend.  Hopefully she gets some help soon.  It just feels like things are dragging on.  Mom's terrified she's going to die in surgery or from surgery complications.  She's terrified of radiation; she's ALREADY in excruciating pain.  She wants to live, of course.  The surgeon wanted to rush Mom into the ileostomy/possible colonoscopy just a few days after the consult, but they seem to have backed off for now (though they keep sending annoying emails/voicemails about watching videos related to surgery/hospital stay, as if we have nothing else going on but to watch/share their precious videos).  I recently stumbled across a book written by someone who's against chemo/radiation/surgery.  I emailed the author.  We spoke on the phone.  The author connected me to an alternative doctor.  I also spoke to the doctor on the phone.  Basically, the author and the doctor recommended nutrition/vitamins to treat my mother's cancer.  The doctor tried to sell me on a vitamin regimen that costs thousands of dollars, and that's the cheaper package.  Where would I possibly come up with that kind of money?  And my Mom exercised and took vitamins for decades and she still got cancer.  I'm not anti-vitamin, but she needs a little more than vitamins right now.  I'm scared about what the surgery/radiation/chemo will do to my mother.  I'm scared about what the cancer has done/will do to my mother.  I still feel like we're in the dark about my mother's cancer.  We still don't know what stage it is.  I feel like these doctors know more about our future than we do.  I don't want her to die from cancer.  I don't want her to die from surgery/radiation/chemo.  I'm not ready for this.  I still don't have my transportation situation squared away (I don't drive at this time: PTSD).  One of my jobs is tolerable; definitely not my dream gig, though.  Far from it.  The other, the assistant manager doesn't like me for some reason and is playing mind games with me like messing with my hours ( I don't care about this person right back, but I care about my hours).  We're still waiting for Mom's disability application to be approved/denied.  I hate this situation. Money and friends would help.    I'm not really that close to anyone right now.  I need therapy but can't afford it right now.    I have a hard time trusting people because of my past.  I know most people are good but it's hard for me to figure out the good people vs. the bad.  I know I'm missing some of the points you made but it's late and that's all I got right now.  Thanks for letting me share.

mxperry220

Pill Crusher

They make pill crushers that might help you mom tolerate pills.  She can mix crushed pills with peanut butter or some other mixture that she likes.

wanttofeelgood

wanttofeelgood said:

At a standstill for now

Thanks to everyone reading and commenting/advising.  I still have PTSD/social phobia and still have a hard time dealing with people/expressing myself clearly, even through my mother's health crisis.  I frustrate myself at times.  Bear with me.  Medicaid approved the PET CT.  It was done over a week ago.  The oncologist's office said it confirms that my mother has anal and colon cancer (the doctor who did the biopsy at the hospital last month that diagnosed my mother's cancer in the first place said anal and rectal cancer) and that it doesn't appear to have spread but we won't know for sure until my mother has surgery.  I feel like they're not telling us the whole story.  Before the PET CT, my Mom had a consult with a surgeon.  The surgeon said that my mother needs a one loop ileostomy and possibly a colonoscopy if she is able to drink all that stuff you're supposed to drink the day before you have it or whatever it is.  My Mom has had a lot of GI problems for years.  Her cancer is a GI cancer.  Pain meds still an issue.  It took 3-4 WEEKS for the oncologist's office, the pharmacy, and Medicaid to get their acts together to submit and approve the TAR for my mother's liquid opioid.  After all that, someone at the pharmacy when I tried to fill the prescription casually told me that the TAR only covers one lousy bottle of medicine.  That my mother needs every week.  Thanks for nothing.  They cover my mother's medicine in pill form but not in liquid form.  I asked someone at Medicaid over the phone why they cover my Mom's medicine in pill form but not in liquid form and they wouldn't give me a real answer, just said some nonsense about doing another TAR, as if I have nothing else going on.  I can't and won't do that every week.  It's soul-sucking, deliberately I'm sure.  I don't have a lot of money but I've been on this website where you can print out/download a coupon and that can lower the cost of the meds, hopefully.  I hate this situation.  It's terrible to be diagnosed with cancer when you have next to no money.  I mean, no time is a good time for cancer.  I just feel especially ill-equipped to deal with this right now emotionally and financially.  But I don't have a choice.  I'm here.  Mom's my best friend and I'm terrified she's going to pass sooner or later from this.  The oncologist continues to prescribe the pain meds.  We're feeling pressure from the oncologist's office to get the ileostomy ASAP.  My Mom and I are WELL aware that she needs medical intervention.  She has a million questions that she doesn't feel are getting answered.  I know she got the phone number to a patient advocate recently and called but they were closed.  It's still the weekend.  Hopefully she gets some help soon.  It just feels like things are dragging on.  Mom's terrified she's going to die in surgery or from surgery complications.  She's terrified of radiation; she's ALREADY in excruciating pain.  She wants to live, of course.  The surgeon wanted to rush Mom into the ileostomy/possible colonoscopy just a few days after the consult, but they seem to have backed off for now (though they keep sending annoying emails/voicemails about watching videos related to surgery/hospital stay, as if we have nothing else going on but to watch/share their precious videos).  I recently stumbled across a book written by someone who's against chemo/radiation/surgery.  I emailed the author.  We spoke on the phone.  The author connected me to an alternative doctor.  I also spoke to the doctor on the phone.  Basically, the author and the doctor recommended nutrition/vitamins to treat my mother's cancer.  The doctor tried to sell me on a vitamin regimen that costs thousands of dollars, and that's the cheaper package.  Where would I possibly come up with that kind of money?  And my Mom exercised and took vitamins for decades and she still got cancer.  I'm not anti-vitamin, but she needs a little more than vitamins right now.  I'm scared about what the surgery/radiation/chemo will do to my mother.  I'm scared about what the cancer has done/will do to my mother.  I still feel like we're in the dark about my mother's cancer.  We still don't know what stage it is.  I feel like these doctors know more about our future than we do.  I don't want her to die from cancer.  I don't want her to die from surgery/radiation/chemo.  I'm not ready for this.  I still don't have my transportation situation squared away (I don't drive at this time: PTSD).  One of my jobs is tolerable; definitely not my dream gig, though.  Far from it.  The other, the assistant manager doesn't like me for some reason and is playing mind games with me like messing with my hours ( I don't care about this person right back, but I care about my hours).  We're still waiting for Mom's disability application to be approved/denied.  I hate this situation. Money and friends would help.    I'm not really that close to anyone right now.  I need therapy but can't afford it right now.    I have a hard time trusting people because of my past.  I know most people are good but it's hard for me to figure out the good people vs. the bad.  I know I'm missing some of the points you made but it's late and that's all I got right now.  Thanks for letting me share.

Overwhelmed, no emotional support

Yesterday I picked up the prescription for my mother's liquid opioid from the oncologist's office.  I deal with the oncologist's assistant.  The prescription was waiting at the front desk.  When the receptionist handed it to me, it was the wrong amount so I had to ask for another prescription.  The oncologist's assistant came out and asked me if I was sure I wanted the other amount.  Yes, I was sure. The assistant went back and had the doctor fill out a new prescription in the correct amount.  The assistant came back and once again pressured me to get my Mom to get the ileostomy.  The assistant all but said that the doctor will stop prescribing the meds until after my mother gets the ileostomy because "all" the doctor is doing for my mother at this time is pain management and that's not what this doctor does.  I put a smile on my face and said I'd let my mother know and left.  Today I'm going to try to fill the prescription at a different pharmacy because the one I have been going to won't have the medication in the amount prescribed until tomorrow and I am so tired of the nonstop runaround I get from those guys regarding the Medicaid TAR, pricing, availability, attitude (my mother might be dying and I'm all alone in dealing with this-I don't expect anyone to kiss up to me but cut me a little slack, I'm stretched to the max here).  I'm not sure what to do about my mother's pain meds situation.  She doesn't have a primary care provider and I'm not sure that they would prescribe a controlled substance.  Maybe a pain management doctor would?  But I'm trying to see if they're covered by Medicaid and so far not finding anything there.  I have to leave for work in an hour and a half.  I'm waiting on a call back from another doctor's office and all I needed to know (my Mom asked me to call them) is if they accept her insurance and if they do chemo (she doesn't want this oncologist who has been prescribing the pain meds to do her chemo since they're playing God with her life, trying to pressure her into a life-altering surgery she needs to emotionally prepare for).  I feel so all alone.  I feel like Mom expects me to come up with all these answers and like I'm not trying hard enough and I need to keep it together.  I want to help.  I want to keep it together.  Pretty much everyone I deal with seems to jerk me around right now and nothing seems to be falling into place, not even Mom's pain meds.  I don't mean to be a big baby but I don't know who to call or what to do right now.  I feel like there's a chance to save my Mom's life here but I feel stuck/overwhelmed right now.  Mom is still waiting to hear back from the patient advocate.  I thought she was an urgent case with her advanced cancer.  This has been dragging on now for almost two months since her initial hospitalization/diagnosis.  We still know know what stage her cancer is and if it has spread to other parts of her body.  I don't understand what is going on here.  I just want peace and my Mom to be healthy.  (P.S. In the past, my mother has tried crushing pills and mixing them in applesauce.  The taste makes her gag.  It works for her for vitamins but not for meds, I think.  Plus, some pills are time-released so you can't crush those pills, of course.)  I get to work all day tomorrow.  I feel like I'm not doing right by Mom but I'm cracking right now.  I went to a support group last night (not cancer-related) and just as I got the courage to share someone told me to speak up and it ruined my whole train of thought.  I couldn't do what I needed to do.  That person ruined what I needed to do.  I need divine intervention.  Thanks for letting me rant. 

eihtak

wanttofeelgood...

I can't say how sorry I am that you are in this spot, and sometimes it seems there is no easy way to fix things. I have been both patient and caregiver for my own mom and husband through our personal cancer journeys. We do the best we can and then have to accept that the rest is out of our hands...you are a good daughter doing all you can and your mom is so lucky to have you.

I remember when my anal pain was absolutely unbearable prior to being diagnosed. I too lived with it for some time before telling anyone. Once diagnosed I was stage 3b and severely anemiac. The recommended treatment was chemo, radiation, and...ostomy surgery. I was at the point where the decision to agree to this "life altering" surgery required little contemplation on my part. It offered relief, and I NEEDED relief. There are several ways to perform ostomy surgery and also different types of ostomies depending on the condition of the colon. Mine is a colostomy and is called a "loop ostomy". It is often done when the procedure has the potential for reversal down the road. Many people have successful reversal once the underlying condition has been treated. Unfortunately in my case, severe radiation damage has left my ostomy permanent. 

My diagnosis was over 7 years ago, and while I'll admit to an adjustment period, now, my ostomy has little negative effect on living a full and active lifestyle. In many ways, I suppose it also made getting through treatment a bit easier for me. The radiation causes extreme pain and burning for many and the pain from bowel movements on this tender burned tissue can be horrific. While my burns were at times nearly unbearable, they were never made worse thanks to my ostomy. Even after healed, trouble with bowel movements continue to be a long term side effect for some.

Please seek continued advice on pain management options for your mom. I wondered about a patch as someone else suggested?? Both your mom and yourself need to be confident in her healthcare team, and if you are not, you need to do what you can to find a new doctor. I'm not sure where you live, but have you asked for help from the American Cancer Society?

Know that you will be in my continued thoughts and prayers for answers and relief and just a bit of peace in your lives.

katheryn

Msmoxie

Praying that you find the help you need

I don't know what state you live in but when I moved my sister and her boyfriend from Texas to Florida the care they receive AT NO CHARGE TO THEM is phenomenal.  My sister initially went to the local social services building and they hooked her up with all of the things her and Dale desperately needed.  Dale suffers from multiple health problems and they pay for all of it ... it seems like your Mom should qualify for disability / Medicaid / Medicare ... and they even have programs that help you with the rides to doctors and more.  In NJ the Amerihealth I have has a nurse on call 24/7, they will give me rides to appointments if I need it, they are just now sending the incontinence products free of charge to my home.  I too am learning as I go that there are programs out there to help us but when you are working two jobs liike you are ... and taking care of your Mom ... you need more help and support NOW.  My doctors want me to do the radiation and chemo and surgery too... I have squamous cell carcinoma of the anus and rectum and I too do not want the side effects and the extensive surgery (which would likely end badly due to the other problems I have with circulation,etc)... I am approaching one year since my diagnosis.  I am able to manage and keep doing everything I want to do with work and helping to take care of my Mom and going back and forth between NJ and Florida ... with Lomotil, Immodium, Flexaril (for the muscle spasms that occasionally cause me pain).  Don't let them scare you into treatments you don't believe in.  DO get a second opinion ... different doctor and nurses... you need more professional people with compassion around you and your Mom.  Not all of the people in health care have that.  I am very fortunate that my primary care physician and my radiation oncologist (who knows I am NOT going for chemo/rad but still helps me... even to the point of being able to call him on the weekend if I have an issue)... these two men are younger and more open minded to what I am doing.  I am trying anything to boost my immune system to do it's job and remove the bad cells... and eventually the tumors.  I also found the alternative doctors that think we can afford thousands of dollars of "supplements"... even the homeopathic doctor was going to cost thousands... I don't have any money either... I can't afford that.  So I take selenium, vitamin D, a few other supplements that helped cancer victims (found in the book Radical Remission)... If your Mom is into it... have her read as much as she can about supporting her immune system... work from that approach while you are trying to get the help that you need.  From what the doctors have told me ... they think that I have had this cancer for five years or more before they found it... the symptoms only started last year.  I truly believe that I can beat this with MY immune system... I appreciate the palliative care that I can get and I am leaving the chemo/rad/radical surgery for someone else... it is not for me.

I pray that you and your Mom can find the help that you need ... wherever you are.  I believe that once you find the right doctor or nurse or facility... they will be able to assist you better than you have apparently been treated so far.  If the patient advocate does not help you ... go right up to the CEO's office...  Let them know how your Mom has been mishandled/mistreated and her pain ignored.  That is not acceptable and should not happen.

wanttofeelgood

URGENT: Ileostomy on Tuesday

I'm going on next to no sleep so bear with me.  So, there have been some new developments since I last posted.  My Mom worked up the nerve to allow me to schedule another consult with the colorectal surgeon she saw in April.  The surgeon's office is literally connected to a hospital.  My Mom was barely eating/drinking because of the constant poop leaking out of her behind and vagina (conversely, sometimes she's constipated with labor-like gas for two days at a time).  The doctor recommended she be admitted to the hospital immediately to have an IV of liquid nutrition started.  The doctor still recommends the ileostomy followed by radiation and chemo.  The doctor said no one will do radiation with poop leaking out of her butt and vagina.  Mom and I didn't totally understand that the picc line that gives her the liquid nutrition goes into a vein that goes into her heart until after she was admitted to the hospital.  That set off another round of Mom's severe depression/anxiety because we were told that if she refused the picc line (which was doctor-recommended) and left the hospital, then Medicaid might not pay the hospital bill and we'll get stuck with it.  We have SEVERE problems anyway that started way before her pain last August/her diagnosis last March.  After Mom slept (liquid Ativan!), she relaxed and agreed to the picc line/liquid nutrition.  However, she will have to take the picc line/liquid nutrition home indefinitely...AND the machine makes a constant raining/clicking noise that will keep Mom awake (she is an insomniac on a good day, and these are nothing but bad days).  We'll also have to give Mom shots in her abdomen to prevent blood clots.  They mentioned someone coming to the house to help Mom, which doesn't work for us because our little dogs are rowdy and don't like visitors and we have stairs and I still have the two jobs so I can't always help wrangle the dogs.  They mentioned a halfway house but they're vague about whether or not Medicaid covers it.  We're not made of money (I wish we were).  The colorectal surgeon was VAGUE when I asked what stage my mother's cancer is, if she'll ever be cancer-free, and what TYPE of cancer she has (the doctor who did the biopsy at hospital #1 said anal and rectal, the oncologist's assistant who looked at Mom's PET CT from the PET CT place said anal and colon, and now the colorectal surgeon from hospital #2 is saying just anal most likely but maybe she ALSO has rectal and/or colon or maybe anal spread to rectum and/or colon.  The surgeon tried to find Mom's CAT SCAN from hospital #1 and her PET CT from the PET CT place online but apparently can't.  A nurse at the ER of hospital #2 said they can't access other hospital's records.  Blah, blah, blah, I forget what else.  I'm drained/numb right now and my PTSD/social anxiety is off the charts.)  AND, even though my mother has had a spasmic esophagus for 25-30 years and can't swallow pills because they get stuck in her esophagus, after the first night, the hospital keeps ordering PILL pain/sleep meds and not liquid.  They crush the pills and mix them in pudding.  All of this is making my mother nauseous, as if she doesn't have enough problems.  So, we're terrified that she might not survive the surgery, she might not survive post-surgery, she might not survive radiation/chemo, we STILL don't know exactly what we're dealing with, we don't know if it's too late to save her life, she's about to have a major surgery, she's scary-skinny right now.  Mom worries that they might already know it's too late to save her life and will put her through surgery/radiation/chemo ANYWAY for the almighty dollar/their jobs.  I don't know if I'm weak/doing the right thing but I know Mom can't go on the way she has.  She has advanced cancer because we didn't take her to the hospital early enough.  I will always feel guilt about that (though my Mom and others tell me not to; I know I obviously didn't act out of malice, I acted out of fear and denial).  I might lose my Mom because of our past mistakes.  She needs help.  I hope this is the right help.  I hope we're not putting her LIFE into the wrong hands.  She's deeply upset.  I'm sad.

Msmoxie

Sharing the anxiety

I wish we could help you disperse the anxiety that you feel.  I have a niece with PTSD and I am aware of her daily struggles.  You have way too much on your plate to not be receiving help from your primary and the specialists that you have seen already.  My primary physician is the one that prescribes whatever I need.  I know I am fortunate to have a wonderful primary.  Even when I could feel that I was getting an infection from the fistula, he sent in the Rx for antibiotics... no fuss no muss... that is the way it SHOULD be.  Seeing as the patient advocate has yet to do anything for you... I would definitely approach the higher powers that you need help NOW ... no more excuses.  I know I am fortunate to not have the PTSD... I have many of my personal health history notes, my background, the research I have done so that I can show the doctors that I KNOW by their professional journal articles, the standard treatment protocols, the information readily available on the cancer treatment centers like Mayo Clinic, MD Andersen, Memorial Sloan... they are still and always will be "practicing medicine".

     My one friend with late stage lung cancer was not accepted at Moffett in Tampa because she had already had ONE treatment at another hospital before going to Moffett when the doctors at the first hospital told her there was nothing else that they could do for her.  

It took a letter from my radiation oncologist (who knows I don't want radiation or chemo) and six months... to get a consult approved with MSK.  

All of this is a full time job... on top of your two jobs in retail.  None of this should be made to be so hard.  If you are in with the group that is attached to a hospital they should be able to give you the team of people to help you with everything.  I know you are struggling ... wish I could send you some of my stubborness and persistence (I have plenty to go around)... 

Once I knew I had my primary and my radiation oncologist and now also a breast cancer surgeon that are on the same page with me... I feel better about the decisions I have made in the past year and know that I am not being "bum-rushed" into the standard protocol.  I actually have a second PET CT tomorrow and hoping that my tumor has not grown or spread (though I am pretty sure it is bigger than when they did the first PET) and of course that concerns me ... but with the muscle relaxer Flexeril, Lomotil, and Immodium... I have been able to manage since my diagnosis Aug. 31 of 2017.

     I pray that you get help soon for your Mom and Yourself as well.

Moxie

eihtak

wanttofeelgood...

I'm so sorry for you both. As you have said "I know Mom can't go on the way she has" and you are correct. I know its easier to give advice when its not for ourselves or own family, but please try to look at the ileostomy or colostomy as an effective and necessary step to regaining health. From there the next steps (chemo and or radiation) may have a much better chance of a positive outcome. My treatment for stage 3b anal cancer involved a colostomy prior to other treatments as well. (That was 7 plus years ago)

As said, your plate is overflowing and I wish we could all help! 

Try to break things down into smaller issues and deal with or think about one at a time even if only for a short time each day. Like, ok, the picc line challenge...we'll handle this today with ear plugs, background noise like a fan, etc. concentrate on the advantage of having a way to administer liquid nutrition or meds...both needed.

Our bodies and minds are amazing and have the ability to survive and recover under the most stressful circumstances.

I've dealt with guilt myself...I put off going in and getting my own diagnosis for far too long and thus was dx with a later stage too. I was in such great pain and had at times fallen asleep kneeling at the side of my bed with my head on a pillow because to lay down in any position increased the pain in my whole bottom! I had all the symptoms, pain, itching, weight loss, trouble pooping, ect. but finally when passing LARGE amounts of blood I went in. Life was happening around me and I too put things off. I am so sorry that I put my family through so much and any related issues that followed. I don't know what your faith is,  but I was told that God forgives us, so "who do we think we are to think that we have more power than He"...let that guilt go and put it in His hands.

Could you both get some help by mom being admitted to a skilled nursing facility temporarily? I believe that most medicaid programs cover skilled care if admitted "from" a hospital after being in said hospital for at least 3 days. I was in a nursing home for a portion of my treatment, and while not a place I wanted to stay, it surely had some benefits during that time for both myself and family.

Please stay in touch and know that you are both in my prayers.

katheryn

 

wanttofeelgood

UPDATE: colostomy, out of hospital #2, in hospital #3, PET CT CD

Thanks for the encouraging words, Msmoxie and eihtak. 

Where do I begin?

June 12 afternoon, Mom had the surgery.  The surgeon went with a colostomy.  They gave her blood transfusions before and during the surgery.  They wheeled her into surgery and then I had to immediately leave to ride app it home to do a closer at one of my retail jobs (because of the PTSD, I didn't learn to drive. I regret that now.  ).  The hospital is about a half hour from our home.  That was a weird day.  While I was getting ready for work, I got a call from the case manager at the hospital.  I could barely concentrate on what she had to say.  Mom wanted to go into a skilled nursing home near our house after she got discharged from hospital #2 to learn to live (temporarily, the surgeon says) with the colostomy, plus the picc line for the IV liquid nutrition.  The case manager said something about they didn't know what Mom's needs would be/recommendations from the doctors, etc., but she'd put in the word for something close to home.  Then, literally as I'm about to walk out my front door to do another ride with an app for work, the surgeon calls.  I immediately panicked and asked, "What happened?"  He said the surgery went well and quickly.  Mom was coming out of anasthesia (sp?).  He told us during the second consult that he wouldn't know until during the surgery if he would do an ileostomy or colostomy.  I asked him, and, like I wrote above, colostomy.  I'm sure I spoke to Mom later that day on the phone during my break.  I can't remember everything, it's all a blur. 

The rest of last week and early this week Mom was at hospital #2.  It was actually a very nice room.  No roommate.  But nurses and doctors and food service people and housekeeping people waking up Mom every few hours for meds, vitals, to talk about her "case," food orders, pick up trash, etc.  Mom needs liquid meds because she has a spasmic esophagus.  Technically she can swallow pills, but they get stuck in her esophagus for hours at a time and cause her agony.  For whatever reason, a lot of her pain/anxiety/sleep meds kept getting ordered in pill form.  They would crush those pills (except for Cymbalta, which she couldn't take because it's time-released and only in pill form, yet for some reason it kept getting ordered for her) and mix them in pudding.  The crushed pills burned Mom's esophagus and made her nauseous.  As if she's not in enough pain.  Tylenol, Ativan, Remeron, Ambien, Oxycodone, potassium, gabapentin, etc.  My spelling might be off on the meds.  I stayed with Mom as much as I could.  Like I wrote earlier, we live a half hour or so away from the hospital.  I don't drive, our car situation is complicated right now, I have the two retail jobs, and I had to feed the dogs.  Our family lives out of state and we are estranged from them (abuse issues).  I have no father, no siblings, no friends.  I like a lot of my coworkers and some of them have gone above and beyond for me (rides home-I live close to my two jobs, and one even gave me a ride to hospital #2) but understandably they have their own lives and we don't know each other that well.  (Plus I'm nervous: I tend to either talk too little or talk too much.  I love myself, as everybody should love themselves, but I'm not always my best representative.)  Not making excuses, just telling my truth as I see it.

So this hospital #2 stay went back-and-forth for a week and a half, lather, rinse, repeat, as they say.  The case worker told us that she got Mom a bed at a "transitional care" hospital, a place people stay when they have to leave a regular hospital but aren't ready to come home yet.  Everyone at hospital #2 was vague about when Mom would be discharged and put into hospital #3.  On Monday, out of the blue, I get a call from someone at a different "transitional care" hospital that I had never heard of and apparenly Mom didn't either when I mentioned it (she's in SEVERE depression/anxiety).  This person told me that the case worker from hospital #2 called them.  I said I only heard about the other place.  This person asked me to come in and tour the place.  That overwhelmed me.  Finally she offered an email tour of the place and I accepted.  I haven't watched it.

Monday I didn't have work.  I planned to come to hospital #2.  When I spoke to Mom on the phone, she felt hopeless because the doctor told her that they need a copy of her PET CT before they can start radiation/chemo (long story short: Mom got a PET CT at a different location in April, hospital #2 can't access those records, Mom had to sign a release form to authorize the PET CT place releasing their findings to hospital #2, fax sent on June 11, PET CT CD sent on June 12, someone (no one recognizes the name) at hospital #2 signed for PET CT CD on June 13, and after that, no one at hospital #2 could find the PET CT CD).  So then I had to play detective, calling the PET CT place, calling the nurses with my Mom at hospital #2, calling the colorectal surgeon's office who did Mom's colostomy.  One of my Mom's nurses at hospital #2 suggested I actually go to the PET CT place myself and personally pick up another copy of Mom's PET CT CD, which got me thinking.  Finally, I called the PET CT office again and asked them to send a copy of the PET CT CD to our house.  The receptionist said it would arrive by Wednesday (today).

I did an overnight with Mom at hospital #2 on Monday (they have a nice foldout couch/bed, blankets, pillows).  I planned to leave Tuesday afternoon to go home to check on the dogs/get ready for another retail closer.  I planned to come back Wednesday night after an all-day double-hitter and do another overnight.  Hospital #2 seemed to be hinting that Mom would be discharged Friday.  That's what I was (sort of) prepared for.  That's not what happened.

Tuesday, 7 A.M., we're asleep.  Mom has earplugs in (insomniac).  Group of doctors bursts into Mom's room and tells us excitedly that Mom's being discharged TODAY.  Mom couldn't hear with the earplugs (I think; I wasn't awake).  I heard very clearly.  I'm numb/panicked/not awake and I ask when.  Doctor doesn't know but assures me it won't be for a while and we can go back to sleep.  We do.

11 A.M., I wake up and leave Mom's room to get a drink.  When I come back, I randomly (?) run into one of Mom's nurses.  She just happens to tell me that Mom will be kicked out, I mean, discharged, at 2 P.M.  Three hours from now.  Mom's still asleep.  Her things aren't packed.  I don't know if she knows what's happening yet.  She's being shipped to the first "transitional care" hospital we heard about.  No mention of the second one that called me.

I come back to Mom's room.  She's awake.  The next three hours are a blur. She knows.  Mom orders brunch.  I keep asking the nurses for more and more bags so I can pack her things. Mom brushes her teeth. They still won't let Mom shower because of the picc line/colostomy bag. They've barely been giving Mom instruction on how to use her colostomy bags.  The nurse who told me we're being kicked out has a bad attitude because Mom got poop on her colostomy bag when she had to empty it herself.  The same nurse gave my Mom attitude earlier when Mom asked for help emptying her bag.  Mom can't lay on her back because her behind feels like it's on fire 24/7.  This nurse insisted she couldn't get all the poop out of the bag because Mom wouldn't lay on her back.  She CAN'T lay on her back!  She's not being a diva.

I haven't even had time to find out the address and phone number of the place Mom's being shipped to.  Finally, the time comes.  Ironically, I had planned to leave at 2 anyway.  I had to ask one of the EMTs for the address/phone number of the place.  I walked with Mom and the EMTs to the ambulance.  Mom had been worried about how she would get transportation to her next place. I cried.  Then I ordered a ride from an app that caused me another nightmare (another story, another venue).  I haven't seen Mom since.

We've been calling each other since then.  This place is also about a half hour or so away from home, in a part of town I barely know.  Mom was having a lot of problems with the phone in her room but they fixed it this afternoon.  She has a roommate with a loud beeping machine for health issues.  She told me she's slept for maybe 2-3 hours since getting there.  She's requested another room.  She's waiting.  Hospital #3 does not have the resources of hospital #2.  The sink is OUTSIDE the bathroom.  She's still not bathing properly.  Mom is miserable.  She has no privacy.  Tonight I suggested Mom come home.  She said no; she'll be miserable wherever she is.  We still don't have her pain medication situation figured out.  Mom wants a different oncologist.  She still doesn't have a primary care physician.  She told me she feels hopeless.  She's said this before.  She said she feels like the cancer has already won.  She feels on fire.  I feel like I need to do a lot more to help her but I don't know what to do.  I'm scared.  She told me to research the other "transitional care" hospital but worries that she'll be unhappy there as well.  Me too.  I wanted to stay with Mom overnight tonight but she said no.  The room is small.  Apparently I have to ask for permission to be there and they have to get me a cot.  Mom feels this whole situation is beyond our control.  I wish we had more money so we could have options here.  I'm so drained from the bureaucratic nonsense.  Someone at hospital #3 treated Mom with horrible disrespect.  VERY misguided.  Mom is a CANCER PATIENT WITH SEVERE DEPRESSION/ANXIETY, not a criminal.  I'm scared Mom is going to have a stress heart attack.  She's alone there.  I want her back home even though it's far from perfect but Mom says she's not ready.  She said she'd be screaming in agony at home.  It wasn't perfect but when Mom went into hospital #2 on June 8, I felt OK-ish.  Now I don't know.  She's bleeding from her privates, probably fistula.

Oh, I got the PET CT CD tonight after my coworker drove me home.  I read the report.  Mom hasn't seen it (she knows I post here).  We still don't know what stage my Mom's cancer is.  Anus/rectum.  Uterus suspicious (doctor at hospital #2 said that to Mom).  Right scalp suspicious (huh? NO ONE said THAT).  Atherosclerotic aortic calcifications (not surprising based on past stuff, I guess).  Liver, pancreas, kidneys, etc., normal.  Something about lymph nodes may be inflammatory.  CANNOT exclude metastatic disease.  It might be too late to save Mom.  No money, no support system, Mom feels trapped.  I don't know what to do.  I'm trying to stay positive like my coworker says but I'm scared.  

wanttofeelgood

My faith...

I forgot to write...

I do not follow any organized religion at this point but I am highly spiritual.  I do believe in a Higher Power.  I pray, maybe not as often as I want to, but I do pray.

(And, off topic, but I feel the personal need to say this: I love my Mom, but I'm angry with her right now for not getting this checked out sooner.  She's been in pain for almost a year.  Bleeding.  It was obvious something's wrong.  If we had gotten to this sooner, it wouldn't be this bad now.  This is a curable cancer when caught in time but now, we don't know.  I hope I don't sound judgmental.  This is how I feel right now.  We have a lot of problems before finding out about the cancer.  If she dies, I'll have to face all of them on my own.  And also the good times, I'll have to have them all on my own.  Maybe that's a little selfish, but that's how I feel right now.)

Msmoxie

anger

Hello Wanttofeelgood,     You are going through normal emotions while dealing with this health care system debacle.  None of us should have to deal with nurses/staff that are without compassion but I have seen it with my own Mom at a hospital in Florida. 

You being angry with your Mom for not going in sooner reminds me of my finding out very late in the game.  I honestly did not feel I had bad constipation and had missed my colonoscopy about five years ago (couldn't finish the prep... made me sick) and since I was not having any problems I just did not reschedule it.  Well, here I am six years later ... and only last year 2017 I had my first symptom of a problem when I pooped my pants on a short walk between my workshop and my Mom and brothers house.  Then it took two months to muddle through insurance to get the gastroenterologist scheduled so on the last day of Aug. 2017 they gave me my diagnosis of Squamous cell carcinoma of the anus and rectum.  I did feel bad that I had not done my annual maintenance so there is guilt.  Your Mom is probably feeling that even if she doesn't say.  My whole career was science/medicine but I was also a workaholic and neglected my own care for too long.  Got away with it for about fifty years then BAM!!!  So I say to everyone I get the chance to:  "Take care of yourself" ... We all get so busy taking care of everyone else that we do tend to neglect our own heath ... it catches up when our immune system is overwhelmed.  

I am currently discussing the colostomy with my surgeon because it would give me some quality of life back NOT centered around the toilet!!!  

Sending extra strength and positive energies your way.

Moxie

eihtak

wanttofeelgood said:

My faith...

I forgot to write...

I do not follow any organized religion at this point but I am highly spiritual.  I do believe in a Higher Power.  I pray, maybe not as often as I want to, but I do pray.

(And, off topic, but I feel the personal need to say this: I love my Mom, but I'm angry with her right now for not getting this checked out sooner.  She's been in pain for almost a year.  Bleeding.  It was obvious something's wrong.  If we had gotten to this sooner, it wouldn't be this bad now.  This is a curable cancer when caught in time but now, we don't know.  I hope I don't sound judgmental.  This is how I feel right now.  We have a lot of problems before finding out about the cancer.  If she dies, I'll have to face all of them on my own.  And also the good times, I'll have to have them all on my own.  Maybe that's a little selfish, but that's how I feel right now.)

wanttofeelgood....

Good golly, I'm sorry this is all happening this way!

Cutting through medical red tape requires a chainsaw at times and thats just not right! Your situation of discharge from hospital and admitting to transitional care reminds me of a while back when my husband was at a hospital 3 hrs from home after back surgery and being sent to short term rehab facility close to home. The social worker at the hospital did not seem to understand the importance of location and other details and although I understand we can not make an opening where there is none, it was a frustrating and exhausting experience. The place he ended up was not ideal, but it was temporary and we made it through. Keep that in mind with your mom. Maybe let her be where she is for just a short time while she gets the hang of her colostomy, then she'll be better in that regard when she comes home. (Btw...it is my experience that in time, a colostomy is MUCH easier to handle than an illiostomy so thats a plus)

I certainly hope someone can help her with pain management asap! Has anyone suggested a pain patch? Her body will take time to adjust to the ostomy, but once in treatment, it will spare her the additional risk of infection on burned open wounds from radiation. The meds may affect her stool as well as anything that "is" given for pain may cause constipation especially with an ostomy so please if not already do request a stool softener.

Emptying a bag can take some getting used to as well as changing the whole deal, but once you find a method that works it becomes like second nature. Also, just like other hygiene products, there are several manufacturers and some work better than others for different people but I'd not concern myself with that just yet. Most hospitals go with the standard manufacturer which is Hollister (is that what her products are?) I can help more on that later but one little tip to pass along when emptying (and also I had to lay mostly on my side in the beginning too)...its easier to empy when sitting or standing over a toilet, bed pan, basin, or whatever. I take a small squirt bottle of warm water and after opening the clasp, squirt some water into the mouth of the bag while holding it kind of upward and kind of swish around (may take a little parctice so be prepared with something to catch any spills at first) then let it down and release into toilet or pan. The water helps the poo to slide out easier. I repeat this a couple times till bag is pretty much clean. I know this all sounds disgusting but this is a safe place for that kind of discussion and what we do best.

On your feelings of anger...you are entitled and certainly not selfish. A lack of emotion would be more concerning really, it is ok for you to "feel."

Know that your prayers are always heard...I think we struggle to hear, see, or feel the answer, but we ARE being heard, so don't give up. Know also, that you and your mom will be in my prayers for smoother days ahead!

katheryn