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My mother's Hysterectomy

MrsBee
Posts: 43
Joined: Aug 2015

My mother just got back from a 4 day hospital stay following a hysterectomy. They removed her Uterus, ovaries and lymphnodes. 

Her bladder Dr.(not sure what they call that) was also present during the operation and said it looked good (she had bladder cancer several years ago and recovered from that).

My mother also had lung noduals show up on her Pet scan-too small to biopsy).

I spoke with the gynocological oncologist who preformed the operation after it was over and he said there was a mass on the uterus, but thathesawnothing else. When I asked about the lung noduals he said if the cancer had spread that far, he would have expected to have seen more than just the mass on her uterus.

Now, I know fro reading posts on this site that they can't really know what's what until after they examine the organs removed during the operation-but is it really a good sign when the surgeon doesn't see anything obvious besides what they were expecting to find beforehand-nothing extra I mean?       Thanks!

 

I should also say that it was about 4 months from the time she first noticed post-menapausal bleeding until she actually had the hysterectomy.    

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello.

It was good that they found nothing else.   From what I am reading from your post, you did not say whay type of cancer they just removed.   Your mom can have several "primary" cancers.  The first one, is the bladder cancer.   Your mom would have seen a urologist for that.   As the lung nodule is too small to biopsy, it is hard to say where that is coming from.   The uterine mass will still have to be diagnosed as it is either a new primary cancer or it is cancer that metastisized from the bladder cancer.   If the cancer in the uterus was endometrial, it is usually a slow growing cancer.  However, it really depends on the Grade (1, 2 or 3) and the Stage.

I hope all is well.

Kathy

MrsBee
Posts: 43
Joined: Aug 2015

It's endometrial.  The mass was on her Uterus. She had the biopsy a while ago and has now had the hysterectomy.

I just wanted to know if the fact that the Dr. found nothing else besides the original mass they saw on the PET scan-if that is a good thing?

Is that a sign that maybe the cancer hasn't gone further than the Uterus?

 

The urologist was there during the operation because the PET scan showed some kind of shadow or something on the bladder-she'd had bladder cancer years ago and the urologist checked the inside of the bladder recently in preparation for the hysterectomy, but the inside of it looked fine. He was there at the operation to make sure the Endometrial cancer hadn't spread to the outside of the bladder, and it turns out it hadn't.

The surgeon said he doesn't think the Uterine cancer spread to any distant sites because if it had he would have expected to see more than just the mass on her Uterus.

Diya
Posts: 93
Joined: Apr 2015

My mum had a hysterectomy 2 yrs ago for endometrial cancer. The surgeon noticed 2 small spots in her lungs in the scan at the time but dismissed them because he didnt find anything else outside the uterus. At that time she received local radiotherapy and was advised she is ned from stage 1a cancer. 15 months later she went into emergency due to abdominal pain. When they scanned her they found both her lungs covered with cancer tumours and now untreatable! Please get a second opinion. Cancer is a very mysterious kind of illness. Noone knows how it works fully. 

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Abbycat2
Posts: 644
Joined: Feb 2014

I am sorry to meet you under these circumstances, but you came to the right place for answers. Cancer spreads 3 different ways: through the blood, the lymph nodes and/or the tumor grows larger. In your mother's situation, the less cancer involved in the debulking surgery the better. Individual cancer cells cannot be detected by cat scan, pet scan or the naked eye.  To determine if her small lung nodules are cancer, the doctors will often do another scan a month to several months later to see if the nodules have grown. If these nodules remain the same size, than it is likely not cancer. I recommend that your mother gets copies of both the operative report and the subsequent pathology report. The path report is the most telling as you will receive the name of the specific type(s) of uterine cancer she had  as well as the stage (if possible) and grade. I was diagnosed with an aggressive cancer that can show up next in a distant organ such as my lungs or liver. It is the nature of this beast.

Warm Wishes,

Cathy

MrsBee
Posts: 43
Joined: Aug 2015

After the operation the Surgeon said the pathology report would be back to him in 6-7 days, which would be today or tomorrow-but he's not having my mother back for an appt for another week from now to take out her staples from the hysterectomy.

Is it usual to wait this long to discuss staging? I mean, if they know now-why wait another week? 

Is this a good or bad sign-or just normal proceedure?

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Its normal.   After my hysterectomy, I didn't find out that I even had cancer until my follow up appointment to take the staples out and I also had a foley catheter in.  What a shock!   Then I had to have another surgery a month later for staging because they didn't know I had cancer when they did the hysterectomy.

That was in September.   I didn't even start chemo until end of November.   So it is normal procedure.

Kathy

Editgrl's picture
Editgrl
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Joined: Jun 2015

the patholoogy was back in a week, but I didn't know the results until my post-op appointment three weeks after surgery.  

Abbycat2's picture
Abbycat2
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I found out about a week after my gynecoliogic oncologist got the results. That's pretty normal. I highly recommend getting a copy of the pathology results. And don't disregard a second or even a third opinion about adjuvant TX- that is, treatment such as chemotherapy or radiation.

 

 

MrsBee
Posts: 43
Joined: Aug 2015

Thanks.

Dr (surgeon)called today to reschedual my mother's appointment for this Friday. That's only ten days after the operation.

The waiting is pretty awful.

MrsBee
Posts: 43
Joined: Aug 2015

I was wondering if it's normal for someone to get tired early in the evening a week after a hysterectomy.

My mother is 82, but she never turns in before 11pm. Last few nights she's been going to bed at about 8.

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Lou Ann M
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Joined: Feb 2015

I would think it a entirely normal.  I tired easily for several weeks after my hysterectomy.  I am recovering from an other surgery now and at 3 1/2 weeks I still am very tired and fatigued.  Each day gets a little better, but surgery takes a lot out of you.  Your mom needs time to recoup.  Hugs and prayers for you and your mother.  Lou Ann

Editgrl's picture
Editgrl
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I usually stay up until 11 or later, but after my hysterectomy, I was in bed much earlier.  Major surgery takes a lot out of your body.

MrsBee
Posts: 43
Joined: Aug 2015

Thanks to you both.

MrsBee
Posts: 43
Joined: Aug 2015

The Dr.said my mother's Uterin cancer is Stage 3A. The mass had gotten through to the Uterin wall. 

He also said both the lympnodes and ovaries were negative for cancer, but that the wash they did contained some cancer.

It sounds like-at least it could be, the cancer has stayed in the pelvic area and possibly went no further than the original mass. That's possible, right? 

She's going to start a series of 6 chemo sessions in 6 weeks.

He also said he wants her to have one Radiation treatment after the first 3 Chemo treatments.

She will have 21 days to recuperate between the chemo treatmnets.

My mother took the news very well and is in good spirits tonight.

She has a friend who's going through chemo and radiation treatments for Prostate cancer. I think she's taking all of this well partly because she sees him doing very well-I mean, she's certainly not as afraid of the chemo and radiation as she would be if she didn't have his example.

Another good thing-on the drive back from the dr.s today-she got hungry for the first time since her operation. We had to stop at McDonalds. 

 

Kaleena's picture
Kaleena
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Joined: Nov 2009

That is the normal treatment protocol.    Just for your reference I was duagnosed with Grade 2 Stage 3a in Sept Of 2005.  Ten years ago.   thry found cancer in my uterus cervix and left ovary.   I had a recurrence in early 2010 and had some microscopic cells in a lymph node.   

I am glad your mom spirits are positive and she is getting her appetite back.   It's good she has you!   Take care of yourself too.   It can be very stressful for you.   

My best to you and your mom

Kathy

MrsBee
Posts: 43
Joined: Aug 2015

Thanks for that!

I understand you're saying your diagnosis was slightly worse than my mother's and yet you're doing great ten years later.

Thanks!

 

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Abbycat2
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Joined: Feb 2014

 

Did you get a copy of the pathology report? What type of uterine cancer did your mother have? What grade is it?  Cancer is graded 1, 2 and 3 with 1 being the least bad and 3 being the worse. I was diagnosed on 10/14/13 with Uterine Papillary Serous carcinoma, always a grade 3. Mine was stage 3a like your mother's diagnosis. My cancer spread from the uterus into and outside my left ovary. My pelvic wash was positive for cancer. I am still NED after finishing 6 rounds of chemo- Taxol and Carboplatin.  My gynecologic oncologist expects me to recur at some point, but he's not God and maybe he's wrong!  In the meantime, I have managed to move on. I bought a new car recently and I will be installing new tile throughout most of my home in November. I realize that this reflects a gigantic HUGE change in my attitude.  I realize that I no longer think it is a waste of time and money to purchase something for myself when I am not likely to be here long enough to enjoy the purchases. I can remember not buying even a lousy pair of shoes that I wanted because I asked myself "What's the point? Some stranger will buy my shoes from a thrift store before I even have a chance to break them in." Yes, pathetic, I know. Strange how this cancer diagnosis effects one's thinking.

Wishing you and your Mom the very best,

Cathy

 

MrsBee
Posts: 43
Joined: Aug 2015

No we didn't get the grading number. We'll ask the when she returns in 2 weeks.

I was going to ask for the pathology report but suddenly realised I didn't know what I needed it for.

I mean to say, if the Dr. or my mother asked why I wanted it-I'd have to say I didn't know.

 

What I'm really worried about now are the side effects from the chemo therapy my 82 yr old mother

is going to have to go through. Is there something they can do to lessen things like bone pain, for example?

That sounds pretty awful.

What did people do in these situations before the internet?

 

 

ConnieSW
Posts: 1576
Joined: Jun 2012

we suffered all alone. I've yet to meet anyone in the flesh with my diagnosis.  I am so very grateful and appreciative that I have all of you.

 I don't think anyone will ask why you want the path report.  It's accepted that as educated consumers we will want our own copies of such things.  20 years ago someone may have raised an eyebrow at such a question but not today.

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Abbycat2
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Without this Board and the Internet, I probably would suffer emotionally in silence, like my grandmother did in 1979. She died from uterine cancer and no one would even talk to her about it because it was not talked about openly in those dark ages. I was told not to travel from Indiana to New York to see her before her death because if I did, my grandmother might think there was something terribly wrong with her health. REALLY??  Gee, they really thought she didn't have a clue?

I have copies of my operative report, surgery pathology report and the results of my Pet Cat scan and two Cat scans. I know intimately about my cancer and available treatment, allowing me to ask the right questions and to evaluate what treatment is best for me personally. I am and will remain an informed consumer of health care services. If one does not understand her health situation than how could she provide her treating physician with the requisite informed consent?

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txtrisha55
Posts: 696
Joined: Apr 2011

The Ut South Western Cancer Center that I go to has an online program called My Chart.  Every appointment, billing and payment is done through this website.  But the greatest is they post every test result for blood work, to ct scans and the pathology report.  It is all there. I have printed some out so I can do my own review and reading up on my case.  I know request copies of all my other dr appoinments and what was done. It is your health and you are entitled to your records especially if you want to ask for a second opinion. Trish

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Kaleena
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Joined: Nov 2009

Hi Trish:

I also have MyChart and another source for all of my information.   In fact, I look forward to it.  You can also see after you have an office visit when the intake person doesn't put down all the information you give her.   Or when they ask are you having any pain today and say no that they put no pain for last several months.   I have caught many intake mistakes that way.

In the earlier days of my diagnosis, I never got my report.   I just went on what the doctor said.   I recently received my records when my physician retired and had to get the records to give to my new doctor.   There were a lot of things on there that I never heard - like the one reason they didn't take my port out was because I was a high risk of recurrence - never heard that before.

Although sometimes the reports can be overwhelming and you have to be ready to read it.      I am on my fourth doctor and I just realize that his records said that my cancer was only found in my uterus when my original reports say uterus, cervix and left ovary.   I think that is important when I tell them my symptoms I am experiencing and the fact that this doctor doesn't do PAP smears.  

Ok - I am rambling here - lol

Kathy

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txtrisha55
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Joined: Apr 2011

yes I found out a l I t from my chart. I was lucky with my dr as she tells me everything on my reports and what it means. She I s amazing. But after every blood test and every appointment I get a message that I have a new report. Trish

MrsBee
Posts: 43
Joined: Aug 2015

This should have occured to me-that's a good reason to get the information!

Thanks!

MrsBee
Posts: 43
Joined: Aug 2015

My Mom's having her chemo port put in Friday.

She's worried about how big an operationthis is.

 

Also, this morning she woke up with extreme weakness, and she was shaking.

She felt better after juice and cereal. Sounds to me like low blood sugar-

is this normal -tomorrow is 3 weeks since hysterectomy.

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Lou Ann M
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Joined: Feb 2015

I have had a port put in twice now, because I foolishly had the 1st one removed thinking I was finished with this roller coaster.  Both times mine were put in by a radiologist who use imagining to place it.  I was awake through the whole process. A little scary, but no pain.  It took longer to get the antibiotic infused then to have the port put in.  It was a little sore afterwards and I,had to shower wih plastic wrap over it for a few days.  The only time I notice it is when someone hugs me tO tight. Glad to hear that your mom is getting a port.  It makes life a lot easier.  Hugs and prayers, Lou Ann

MrsBee
Posts: 43
Joined: Aug 2015

Are visitors allowed to be with patients during chemo-to sit with them?

 

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Lou Ann M
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The1st place I was at didn't really like it because they had very little room.  My husband  insisted and they did make room for him to sit on a stool.  When My cancer recurred we went to a place where he was very welcome.  They always find a comfortable chair for him and he sits with me every time.  Insist If they don't encourage you to stay with your mother.  Lou Ann

Editgrl's picture
Editgrl
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has chairs for visitors during chemo.  Unfortunately for the visitors, they aren't nearly as comfortable as the patients' chairs!

 

Editgrl's picture
Editgrl
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For all practical purposes, I was unconscious.  My team was great!  They showed me the port beforehand, started an IV, asked me what music I wanted in the operating room.    They wheeled me in, gave me two doses of whatever lala drug they use, and I was out.  When I came to, the surgeon was tugging on the thing, but I felt no pain.  BF drove me home.  Relatively easy procedure.

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Sandy3185
Posts: 228
Joined: Oct 2013

I had my port put in right before I started chemo and it was really no big deal. They gave light sedation( twilight sleep) and it only took about 20-30 minutes. I had very little pain, didn't even need to take Tylenol. That was in January 2014. I just had my port removed earlier this month and they only used local anesthesia. i was awake the whole time and felt nothing. Even after the anesthesia wore off there was only slight discomfort. But what a psychological lift! I feel like I am done with cancer.

Please tell your mom not to worry, it is a minor procedure and well worth it. Having chemo without using a port is definitely NOT the way to go.  Sandy

pinky104
Posts: 574
Joined: Feb 2013

The only problem I had with my port insertion was that the room the interventional radiologists used to put it in was very cold (62 degrees).  They said it's always that cold.  I like my heat up high, and no number of sheets and blankets they put on me could keep me warm.  I was awake through it and it wasn't a hard procedure at all.  Mine stuck out more than most did. How it looks depends upon how deep the blood vessels it goes in are.  I kept it in for over 3 years just in case, and the radiologists said I was wise to do that.  My biggest problem with it was putting a seat belt over it.  My husband bought me a lambswool seatbelt cover, but that would slide around, and I'd have to keep adjusting it.  Even that hurt a bit.  Mine was on my right side and only hurt when I was sitting in the front passenger's seat because of the way the seatbelt hit it in that seat.  When I was driving, it was no problem, but I didn't do that for a few weeks.  I'd had pretty extensive surgery (stage IVb cancer surgery plus removal of my gallbladder and appendix for gallstones).  Sometimes ports go on the left and sometimes they go on the right.  It depends upon what they find when they examine the blood vessels.  Your mom will also have a little slit in her neck besides the one where the port is.  I had to put Glad Press'n'Seal over mine for my shower (it's like Saran Wrap but adheres more tightly).

I think you're probably right about the low blood sugar, especially since she felt better after eating.  In addition, she could be weak from blood loss during surgery, but 3 weeks seems like a long time for that to suddenly show up. 

Having the port removed was even easier than having it put in.  I didn't even have to go in a special room, and I think I was out in less than a half hour. 

MrsBee
Posts: 43
Joined: Aug 2015

Thanks, guys, I'm going to sit with her at the Chemo.

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NoTimeForCancer
Posts: 2911
Joined: Mar 2013

After listening to everyone here I think I am the only one who has had a bed during chemo.  I loved having a bed.  The first time they hit me with the IV benadryl it hit me like a ton of bricks. 

BTW MrsBee, everyone at my chemo location had people with them.  They realize that having family and friends with you really does help the patients in recovery and treatment

DebiR
Posts: 39
Joined: Jul 2014

The cancer center I was treated at had some beds too.  I didn't get a bed every time as they only had three and reserved them for the first timers. Then if available, they went to someone with a longer infusion time which was generally me as I was always there all day.  It made it easier if I had a reaction to the chemo which I did the first two times.   I got the bed 4 out of the 6 times.  Was definitely nicer as then I had a private room and could easily sleep.  The first time I got the IV Benadryl put me out also.  No way I could keep my eyes open.  After the first time it didn't seem to have the same impact.

The room with the comfy chairs had places for visitors to sit but like everyone else reported, the chairs were not as comforable as the treatment chairs.  

Debi

UPSC 3A

4-11-14

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Hopeful162
Posts: 82
Joined: Sep 2014

My experience with a port was very similar to others who have commented, but I will say that I had quite a bit of pain for about three or four days after insertion. I called the office and was told I could take leftover hydrocodone. They did have to dig around to settle it in, but I was left with only a subtle bump when it was finished. I was "awake" for the procedure, including hearing the attending give directions to the resident who was doing it, but the IV drugs made me not care particularly about what I was hearing and at that time I had almost no pain. I am very glad I had a port as it gave me free hands and no chance of a needle slipping out during infusion.

As for chemo, I had a very comfortable reclining chair, and my husband stayed with me in the room. A volunteer would give hand or foot massages if wanted. There were two chemo patients to a room and two chairs for visitors at my center.

I don't recall getting much input from this site about chemo, probably because I didn't ask, but I really do like knowing what is happening, so it's good you can be your mother's advocate.

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TeddyandBears_Mom
Posts: 1802
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My chemo place doesn't have a place for visitors to sit with you. They have a waiting area where family members can sit.  We don't have beds either. But the recliners are comfortable.

I have not had my husband wait with me throughout the 7 infusions. Just never felt the need for him to be there.  He does drive me to my appointments and pick me up. Thankfully, we are only 15 minutes away.

The Benedryl still kicks my butt. I generally sleep or eat the entire time. And, I come home and sleep some more.

MrsBee
Posts: 43
Joined: Aug 2015

What's benydril everyone keeps mentioning for?

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Lou Ann M
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Joined: Feb 2015

It is a medication that is given to prevent allergic reactions.  You can buy it in the store and is often used for allergies and rashes .  They give a much larger dose during your premeds before you start your chemo.  It makes most people extremely sleepy.  Some of us have the opposite reaction.  It keeps me awake for hrs.  Lou Ann

MrsBee
Posts: 43
Joined: Aug 2015

Thanks.

MrsBee
Posts: 43
Joined: Aug 2015

My mother just got back from having her chemo port attached.

She was surprised that there was no pain involved and she was awake through the whole thing.

She said if they told her she had to go tomorrow for the same thing, she would, no problem.

Now she gets to rest for two weeks until first chemo treatment.

Glad one thing's gone well in all of this so far.

Editgrl's picture
Editgrl
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and hope that the fact that it did will give your mom some peace of mind.  Sometimes the scariest thing is simply the unknown.

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I had my port put in yesterday but they did it under general anesthetics with the tube down my throat and also cut a small hole in my neck to thread the tube.  I wonder why some doctors do it one one and other doctors the other?  I also had chemo today instead of letting my incisions heal first.  Your mom's way sounds a LOT easier than mine.  I'm glad things are going so well for her!!!

Take care,

Eldri

MrsBee
Posts: 43
Joined: Aug 2015

Thanks, really hope it wasn't too bad for you.

I'd like to know how the chemo goes, if you have a moment now and again, and are up to it of course.

My mother starts hers in about 2 weeks.

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EZLiving66
Posts: 1479
Joined: Oct 2015

First they gave me medication, a steroid, to reduce swelling that could be caused by the first chemo drug. That took about 15 minutes.  Then they gave me one of the chemo drugs that took about half an hour; then the second chemo drug that took an hour.  There were two nurses there who kept asking me if I was feeling ok - was I getting itchy, did I feel light-headed, anything out of the ordinary?  I was fine and was there for about three hours.  My chemo nurse said some kinds of chemo can take double that time so I guess it depends on the type of cancer and the type of chemotherapy.

The nurses told me to drink, drink, drink.  I could drink anything I wanted except alcohol (I don't drink anyways) but if I drank something with caffeine, I still had to drink eight 8-ounce of non-caffeinated liquid - soup, water, juice, soda, coffee, etc. all counted toward those 64 ounces.  She also told me to get real ginger ale - not the diet kind.  She said to open the can and let it sit in the fridge so it stays cold.  She said that has really helped people who get nauseaous.  I also have two different kinds of nauseau drugs and an anti-anxiety medication to take if I need it.  I take my steroid medication tomorrow, Thursday and Friday.  

I'm also set up for blood work on November 6th and November 16th with my next chemo on the 17th.

It went MUCH better than I thought it would.

Take care and let me know how your mom's chemo goes.  How old is she??

Eldri

MrsBee
Posts: 43
Joined: Aug 2015

Thanks for the information giving me some idea of what to expect.

My motheris 82.

I'll post again about how the chemo goes for my mother.

Really hope you're having a good first day after.

 

And thanks, Molimoli!

 

 

molimoli
Posts: 514
Joined: Aug 2014

I can add nothing on this subject  but letting you all know that I wish you all showers of NED blessings as you continue your journey and as I read I keep wishing I was a genie, I'd make us all well and all ports would be at the ship docks where they belong and stay there .

Stay courageous and brave, I am hugging.Nuff nuff love.  Moli.

MrsBee
Posts: 43
Joined: Aug 2015

My mother just found out her first chemo treatment is this next Monday morning.

We were expecting a liitle more time for her to recover from hysreectomy.

She's only just starting to get some of her energy back-for example,

she  gets completely exhausted from just taking a shower. 

I sense that she's nervous about the whole thing.

Wish we knew exactly what was going to happen.

 

 

 

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Lou Ann M
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Joined: Feb 2015

chemo day is actually pretty easy.  You get to set in a comfortable chair and wonderful chemo nurses and volunteers wait on you.  they bring warm blankets and snacks  while you sit.  My chemo room has TVs that you can watch, a lot of people read or nap.  I play on my Ipad, draw, or color in an adult coloring book.  It does take awhile  They have to access your port and start a saline solution, and run the premeds before they start the actual chemo.  I have always had  a day or two feeling pretty good before the side effects hit.  Hoping for the best for your mom.  She is lucky to have a caring daughter.  Hugs and prayers, Lou Ann

MrsBee
Posts: 43
Joined: Aug 2015

Thanks, I'll tell my mother what you said about it, I think it will make her feel less anxious.

And, I guess I never made it clear-I'm a son.

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