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Just diagnosed, high anxiety

elainegint
Posts: 11
Joined: Jul 2019

I am 68 years old and was just diagnosed. First meeting with oncologist is next week. But I'm crazy anxious about the whole thing.

And because I live alone, I am especially concerned about the recovery after the hysterectomy --- how painful, how long, how much help I will need at home.  I would be grateful for any input or advice.

cmb's picture
cmb
Posts: 349
Joined: Jan 2018

I live alone too. Before my surgery I stocked up on groceries and pet supplies such as litter and cat food.

I was fine on my own after surgery, but I did ask my sisters and a good friend to help with washing the litter boxes once a week for the first month since I was restricted from lifting more than 10 pounds for 30 days. The boxes of litter weighed more than 10 pounds.

Actually the most challenging part was just getting out of bed without anyone to help. It was really painful and I felt like I was pulling at my incisions. So I found a video on You Tube that demonstrated a good technique that really helped:

https://www.youtube.com/watch?v=heEvgDc4w90

I took the pain killers for the first couple of days, but then I stopped as I didn't really need them. I also did not take the pills prescribed for constipation as I did not have this problem. I had the opposite problem with diarrhea, which continued to bother me during chemo, radiation and even today. So while constipation after surgery may be more typical, be prepared for diarrhea too just in case that how your body reacts.

I didn't drive for the first week or two, but I did after that since I wasn't taking the pain medication.

As compared to chemo and radiation, surgery was the easiest part of the treatment process for me.

elainegint
Posts: 11
Joined: Jul 2019

Thanks so much. I'm hopeful that it will be done laparoscopically, which I know should make the recovery easier and faster. 

I am trying to get a friend or maybe a home health aide to stay with me for the first few days after. And I have a caring neighbor who will also help.  No pets to worry about, just myself. 

In your experience, are chemo and radiation always required? Of course, I don't know yet about my case. 

Luckily, I live in a city where I can order online for delivery for just about anything I need. 

Thanks for the Youtube video link. I wouldn't have thought of looking there. 

Feelingalone74
Posts: 175
Joined: Jun 2019

HI elaineeight, it's perfectly normal for you to be feeling anxious about your new diagnosis and the hysterectomy. Do you know if you're having a laparoscopic hysterectomy? I am in the beginning stages. I had a hysterectomy last month and will start treatment in another week. I think everyone's body tolerate surgery differently. But I can tell you that I have laparoscopic and it wasn't as bad as I anticipated. The first day was very uncomfortable in the hospital. I only had to stay one day. When I came home I did have much discomfort but the Tylenol and pain killer and nausea medicine helps tremendously. I had to rest often for the first few days and realized only took the painkillers no I don't usually take things like that. It helps. The first week was exhausting. If you have a friend that can stop by just to help you with meal prep or just helping u out that would be helpful. I do suggest going grocery shopping and getting meals put together prior to surgery so that you'll have something easy to heat up. Take little walks even if it's only around the house. They told me to walk often but dont over tire myself. I would walk to the corner a few days then go a little farther for a few days. By day 7 I was feeling better and day 10 I felt almost like myself again and could do light house keeping. 2 weeks I was back to my normal routine. Taking long walks and daily activities. Keep your focus one day at a time.
This is no easy time and the diagnosis is hard to cope with. You're not alone . Your feelings are perfectly normal!
This discussion board has given me so much info. The ladies on here are so AMAZINGLY, KIND AND SUPPORTIVE. Having them share 1st hand experiences has helped me to know what to expect.
Best wishes to you, Michelle

elainegint
Posts: 11
Joined: Jul 2019

I don't like surprises, so I really appreciate your information.

Although it isn't pleasant, I can handle a little pain or discomfort. It's the anxiety that is really debilitating for me on top of everything else. I've been taking a tiny dose of Xanax to get me through so far. 

But knowing that i should be able to be self-sufficient after a week is somewhat comforting.

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

your biopsy results.   The treatment really depends on the type of cancer cells.  If they were endometrioid it is really possible that you will have. not more treatment.  If it was another type, chances are you will need further treatment.    I had laparoscopic and an incision.  I don't remember much pain at all.  I took pain killers for two days after.  I left the hospital after 24 hours.  

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

I had a robotic assisted hysterectomy (plus all the other parts, ovaries. tubes etc.) plus a total of 22 lymph nodes. The actual surgery was not all that bad, I could have gone home the same day but since we live quite a distance away, I stayed overnight. The biggest surprise for me was the gas! With a laproscopic hysterectomy, they blow you up with gas so they can see what they are doing. That takes a few days to completely go away, I felt like a beach ball, although I didn't look like that. Maybe ask about that if they don't mention it to you. Recovery from the surgery was not super long for me, just not allowed to lift things for a while.

Fridays Child
Posts: 41
Joined: Jul 2019

We had a wedge pillow and I dug that out to sleep on the first couple of nights to help dissipate the gas.  Seemed to work pretty well.

MAbound
Posts: 847
Joined: Jun 2016

it helps to have this on hand, too. It really helps. The wedge pillow is a good idea if you have one because you don't want to sleep flat the first couple of nights afterward. If you don't have one, a recliner chair is comfy for sleeping  more upright, too.

Feelingalone74
Posts: 175
Joined: Jun 2019

Great idea suggestion the video cmb! 

I was worried about that too. Just go slow. You'll  be ok!

I also suggest getting your some magazines,  a good book or Crossword puzzles during your healing time . Keeping my mind busy helped!

I couldn't drive for 2 weeks as well so if possible get as much as you think you'll need prior to surgery and getting any daily prescriptions filled if needed.

cmb's picture
cmb
Posts: 349
Joined: Jan 2018

I had laparoscopic surgery, so my recovery was easier than other women who had the full abdominal surgery. But as Mabound noted in her response on the other discussion topic, you won't know the stage or grade of your cancer until after the surgery is done. That will dictate what, if any, further treatment will be needed.

I second Feelingalone74's suggestion about puzzles. While I normally enjoy reading, I found it hard to stay focused on books post surgery and during chemo. So I ended up doing several puzzles (not the cross-word ones) during this period. It was a good way to keep my mind occupied without much effort.

elainegint
Posts: 11
Joined: Jul 2019

 I don't know what stage it is but pathology report said it wa atypical complex hyperplastic and focal, well differentiated and called endometrioid adenocarcinoma. Gyno said it was caught early. She said for a bad thing it was the best possible situation. That's all I know right now.

I am a knitter (professionally at times) and love crossword and suduko so I am stocking up to keep me occupied. MIght even try a jigsaw puzzle. 

So great to have found this discussion group. So grateful for all your insights.

suzycruise76's picture
suzycruise76
Posts: 74
Joined: Mar 2019

"for a bad thing it was the best possible situation".....

this is exactly what my onco surgeon told me after the biopsy and scans.  I was diagnosed in January this year,and now I am after the chemo and radiation at first,and after surgery on May31. According to all pathology results I am cancer free,and do not have to have another treatment. And it all happened in 5 months!

Oh,I should mention,that I had colon cancer,not uterine cancer (even though the surgeons processed with hysterectomy plus the colon resection and tumour removal).

I am sure you are going to have easy recovery after your surgery,and wish you all the best,

Suzy

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denise71919
Posts: 9
Joined: Jul 2019

hello Elaine. I too was recently diagnosed July 19. biopsy revealed uterine cancer. Appt this Tuesday with ongologist. Had no symptoms until after biopsy was done over a week ago. My anxiety is high. I recently lost my only son January 1st of this year. I am still grieving and now I face this.  Good luck to you. 

MAbound
Posts: 847
Joined: Jun 2016

I am so sorry for the loss of your son! I can't imagine getting this diagnosis while dealing with such a burden. We put our hearts and souls into raising our children and would rather die ourselves than suffer something bad happening to them. Please know that I'm giving you a mental ((hug)) right now. If you need to talk about him, there are many sympathetic ears here. You may have lost him, but I'm sure he's left you with many memories that will be like him whispering in your ear when you need him.

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NoTimeForCancer
Posts: 2562
Joined: Mar 2013

(edit)  Denise, I am sorry about the loss of your son  I just can't imagine what you are going through.  

Please ask to work with a gynecologic oncologist and know that this is your stop with questions.  

I would suggest you try taking this one step at a time.  You certainly have a lot going on, but you are not alone on this cancer journey.

(My apologies for my previous mis-post.  It was truly unintentional.)

elainegint
Posts: 11
Joined: Jul 2019

It is Denise who lost her son, not me.

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

I didn't see this. Your biopsy is very good news.  If it endometrioid and no myometrial invasion, you wil likely have no treatment.  Or a few brachy radiation.   HOpefully it will be good news for you.  And that is the most common outcome for your biopsy.  

janaes
Posts: 751
Joined: May 2016

I was one of those who had a full abdomanal surgery. I lived alone with my two yonger kids at the time. My surgery took longer to recover from. I was in the hospital for 3 days. Im not sure why but it was the plan to do the full adominal surgery from the beginging. Its true they dont officially diagnose until after surgery. My oncologist told me mine was stage 2 before and that is what it was after surgery. I had a table by my couch and a nightstand by my bed and bought food that i could just keep there in case i didnt feel like getting up. I kept my medications there too to make it easier. I hope it goes easy for you but it took quite a while to fully recover. It worked out though. I drove still. That was easy part. I did stop tsking the meds too and just tolerated the pain. It did slowly get better.

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jan9wils
Posts: 56
Joined: Mar 2017

Hellow Elainegint,

I am sorry about your diagnosis. Cancer really sucks. People say things to try to be helpful like, "stay positive!, and your're strong!" which I did not find helpful at all. That said, you will find the people on this board extremely helpful. I feel that they "have my back".  I too,  live alone. I had a robotically assisted laparascopic total hysterectomy. I went home the next day. I did not do well with the pain meds they gave me so I switched to tylenol and that was fine. The gas pains were awful. I slept in a recliner. In the hospital they gave me a device to breathe into with a goal of reaching a certain level. This was to help manage the gas from the surgery. I walked a lot, little walks several times a day, around the house and then outside in the evening. My sister came to see me through the surgery and stayed for 5 days afterward. I was able to manage on my own after that. I recovered quite quickly. 

 

Quilter_1's picture
Quilter_1
Posts: 35
Joined: Mar 2019

My sister-in-law called to see how I was doing when I got home from the hospital.  My husband told her that I was doing well, but, I was having trouble with gas.  She told him to have me lay on my left side, low and behold, she was right.  I could easily relieve the gas,  I’ll never doubt her again.  She is a wonderful sister in law, checked in on me regularly and stopped by often to see for herself.

 Best of luck to you.

 

elainegint
Posts: 11
Joined: Jul 2019

My surgery is scheduled in two weeks and it will be done laporascopically. Althoug it is considered ambulatory surgery, because I live alone, the oncologist says he can keep me in the hospital overnight. That makes me feel a bit more secure. And I am arranging for some overnight help for my first night at home.  Going through pre-op testing, although some was already done for the D&C I had 2 weeks ago. My anxiety is still very high, but I just want this thing out of me!  Very weird to think about this nasty thing inside of me. Oncologist says that 90% of the women with this type of cancer who have a hysterectomy do not require further treatment, so I am focusing on visualizing myself in that 90%. But I won't know the grade, etc. until after the surgery. Thanks to all of your advice, I am stocking up on Tylenol, Gas-X, MIralax and Immodium , prepared for all contingencies. If you don't mind sharing, in your experience, how long should I expect to be bleeding after surgery? After the D&C, I was bleeding for 5 days, getting lighter each day.

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TeddyandBears_Mom
Posts: 1517
Joined: Jun 2015

Elaine,

I think you will be surprised at how much you will be able to do on your own. Just remember not to lift anything over 10 pounds. Also, try to put things at a level in the fridge and on the counters where you don't have to reach up to get them. It would be helpful for you to have some precooked food ready as well. I only took 2 pain pills when I got home. And, I could have gotten along without them. The hardest part for me was getting up from the couch and bed for a few days. And, getting rid of the gas took a while.  Walking around the house helped a lot. 

You got this! Please come back and let us know how you are doing. 

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

Others will give their experience.  During surgery your cervix is removed and the top of your vagina stitched closerd.   The wound heals but shouldn't bleed.  Some discharge but it wasn't blood.  

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BluebirdOne
Posts: 194
Joined: Jul 2018

I had a bit of pain, took only one pain pill, then was able to use over the counter stuff. Compared to my two C-sections, it was an absolute breeze. I did not have any gas. The nurses showed me how to roll out of bed rather than trying to sit up which really helped. It is a roll on your side and up movement. My biggest problem was incontinence. I could not tell when I was full so I ended up peeing on my self until I started to heal. Something about the rearrangement of the organs when they remove everything plus they thought I most likely had some nerve damage or disturbance. It got better over time, but I still do not receive the best signals for when I am really full. I also had a tough time with incontinence during infusion because they drip so much fluid into you that I was always going to the bathroom. I had stress incontinence before surgery so that contributed to my issues. Good luck to you.

Denise 

Quilter_1's picture
Quilter_1
Posts: 35
Joined: Mar 2019

I had no bleeding after surgery.  I thought I would, so I bought maxi pax’s pre surgery, anyone need them? 

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BluebirdOne
Posts: 194
Joined: Jul 2018

eom 

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

eom 

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LisaPizza
Posts: 208
Joined: Feb 2018

Lol, same!

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