Need Advice on what it is like to live without an omentum

blackdot

I'm 68, newly diagnosed with ovarian cancer as the primary and peritoneal carcinomatosis as the secondary. I will have 4 chemo treatments, then a complete hysterectomy including removal of  cervix and omentum, then 2 more chemo treatments and maintenance chemo pills. This may give me 3 to 4 years.  I have no knowledge of what living without an omentum entails.  I need information from people who have had theirs removed and how it affects their life.

Strongwoman

@blackdot
  I would say you won't notice anything. I have had mine removed. I have heard it described as 'partial' but thought it was 'full". Main point is I can't say I notice anything. I noticed more from the radical hysterectomy and debulking etc than I did anything.  Basically everything finding its new place once removed. I have low grade serous grade 3C primary peritoneal cancer which is treated the same as ovarian. Having the omentum removed hasn't affected my life. Surgical menopause and my recurrence, does affect my life.
  Are they able to do your surgery laproscopically or have to make an incision?
  What is most concerning to you given the information you have received?
  

blackdot

Ovarian is primary, peritoneal carcinomatosis secondary. I'm 68. Full hysterectomy including cervix and omentum.large incision. This may buy me 3 or 4 years. Onviously the first year is hell.

Strongwoman

@blackdot
  My incision was from sternum to pubic bone and knew it was a possibility I would be opened that much going in but no one knew for sure until they operated.  I will not lie, it was difficult to overcome. It took a lot to just walk every day slowly and with help. I had help showering on a shower chair as well.  If this type of surgery is in your future, plan ahead would be my advice. Have a raised toilet seat and wipes. Make sure you have someone that can stay with you for a bit and can help you with many things we consider "simple".  Meals prepped in advance etc.  
  As far as a timeline, many of us have been given one. Some have surpassed them, some on their journey to a date given and of course others have passed.  As hard as it is, live in the moment and day to day.
  Talk to your team about what they are presenting to you for treatment. Risks and benefits. Ask questions.  In the end, this is your journey and your body. It will respond in its own way as well.  
 I would say my biggest challenge was gaining my strength back and being able to do things on my own like shower. Every small accomplishment meant I was starting to heal. 
  Chemotherapy itself can be tough but your team will work with you to minimize any side effects. I am not sure if you have had chemo before from your post. 
  I wish you the best in your treatment decisions.  They can be difficult to make. It is all difficult from hearing your diagnosis, to treatment options and then side effects and recovery or recurrence. A lot physically, emotionally and mentally. 
  I wish you the best and keep us posted.

blackdot

Thanks. Also dealing with my only adult child in palliative care. Just don't think I have much fight left. This feels like the final punch. Good luck with your journey.

Strongwoman

@blackdot
  You are going through a lot. Do you have supports in place?  You can reach out to your team and/or hospice to find supports as well.  It sounds like you are torn with what to do, outlook etc.  Plus what you are currently processing with your adult child. 
So tough and hard. Sending you hugs and holds.

blackdot

Just got the treatment plan Friday. Used the weekend to research to help with my decision. No, I have never had chemo but just watched my BIL go through 4 years of it. I don't think I'm interested. Will look at all supports, either way,  this week. Thanks for your help.

Strongwoman

@blackdot
  Hello.  You seem very definite in your decision in your last post.  I bet it was difficult to watch from the outside having someone go through treatment.  Only thing I would caution is that chemo is not the same for everyone nor the type they use nor the side effects of.  That's all I will say on that.
  I wish you the best outcomes whichever avenue you decide to take.  These are all hard decisions when we are faced with them.  
  You are always welcome to join our Teal Thursdays @ 1pm for a live online chat if you wish.  You need to refresh your page to see incoming comments on it and/or a black box will appear to show you new messages so you know to refresh.  If you can and want to join us, we will meet you there.
 In the meantime, reach out when you feel the need.
Take care

Strongwoman

@blackdot
  Checking in to see how you are doing and how the week went.  You had a lot information to process. 

blackdot

Yes. I got more questions answered. Having a feeling really good day today. Leaning more towards treatment. Emotions are random and all over the map, but especially ticked off. Thanks for checking in.

Strongwoman

@blackdot
  It is hard and the choices we have are difficult at times. Throw a little bit of emotions in there and add a dash of physical symptoms and voila...here we are!
  I am thankful that you are considering treatment. Always good to weigh pros and cons with quality of life.
 It can be an emotional roller coaster ride for sure.  All those feelings are normal. Anger or ticked off is one of them. Questioning everyone and everything can occur as well. Our worlds are rocked by the information we receive and our brains kick into fight or flight for a bit. Find an outlet if you can for these times.  Some use Journaling or crafting or something active to distract themselves or get out what one is feeling.  Whatever works for you is best.
  Hope this helps and that you embrace some discussions that others have had and to know we are all with you on your journey.

Strongwoman

@blackdot
 Thought I would check in to see how things are with you and if you have any updates you would like to share. Have been thinking of you.
Take care

blackdot

Hi. Thank you for reaching out. I have had 4 chemo treatments by infusion. Carboplatin and Paclitaxel to start with. I had an intolerance to the Taxel so have not had for last 2. My CA125 numbers are down to 106. I will have surgery May 11. Right now I am within the week of chemo and having constant nausea. I do have pills which keep me sleeping and or slow dull feeling. The nausea is still present unless I am asleep.
How are you doing?

Strongwoman

@blackdot
  Ugghh so still some rough times..sorry to hear that. What do they give you for the nausea?  I had a cocktail of Dexamethasone along with the nausea meds for a few days after chemo. I found my 2nd treatment side effects the absolute worst.
  How do you feel about your upcoming surgery?  Have you had any consults regarding it and how the procedure will be done? (Laproscopic, horizontal or vertical incision)  I would highly suggest purchasing a raised toilet seat for your toilet. I don't think I could have done it without it. I also borrowed my elderly Aunt's shower chair to shower initially. (I was also opened up from sternum to pubic bone.)  I had someone help shower me in the beginning to graduating to shower on my own (which was heaven!)  and what a sense of independence and accomplishment it gives you.  Take any assistance you can get as you heal from surgery which includes preprepped meals for the family. It took me a bit to eat normally again so had broth, rice, jello, fresh fruit etc in the beginning. Fish was also something I could tolerate and enjoy.  Everyone is different of course and am sharing my experience.  I will recall soon the name of a product that helped with the residual gas from the surgery and post it to you to have on hand as well.  I figure the more prepared you are, better and if you require none of it.....wonderful!  
 Today in South Western Ontario it is cloudy but nice.  I am off to prepare a new morning smoothie made with taro root. I boile and mashed it yesterday in coconut milk and am going to add a fruit juice and bit of sweetness to it. It smells nutty after cooking it and has tons of benefits to it. Will let you know how it goes.
Take care....and feel free to ask anything!

blackdot

Hi! Thank you for your response and tips. I take one capsule for nausea just before my chemo treatment, Netupitant/Palono300/0.5. I was also given a prescription for Prochlorperazine 10 mg every 4 hours as needed. They make me sleepy/dopey. I had no nausea for first two treatments then it set in with a vengeance after the 3rd and 4th chemo treatments. As mentioned before, I had an intolerance to the Taxel so it has been discontinued for Round 3 and 4. Just getting the Platin. However the oncologist says the Taxel may be reintroduced after surgery for the 2 remaining infusions. Yikes! The intolerances really scared me. Blood pressure went wild, way up and way down. I really thought I was done.Thankfully those oncology angels (nurses) are always on their a-game and got me back quickly. I'm sure they have seen it all! Back to nausea. Something that worked for me yesterday was to eat dry shreddies for most of the day each time the nausea hit, which was often. I'll try that again today. The extra fibre can't hurt. I really reject water after chemo treatments and struggle to get the amount of liquid needed. That battle is ongoing. I just keep lots of kinds of juice that I water down and flat gingerale and try to keep sipping. The oncologist also prescribed Metoclopramide HCL 5mg to try for nausea but the warning on the pharmacy sheets scared me so I have not taken it. Kind of silly since I have had nothing but toxic poison pumped into me since this cancer dance has begun. 
I will have a consult with surgeon on May 5th.  The incision will be vertical from belly button to pubic bone. Thank you for the tips of food and equipment to have on hand. I will get it all. I have lots of friends and family who have offered to stay with me after surgery so I will make a schedule and welcome their help. I will need to live to 100 to pay all this kindness forward.  I have been told I will probably have another chemo infusion at the 4 week mark after surgery. Yuk! Can't even imagine what hell that will be like! Sometimes I wonder why I am doing this and then I get to the "good week" and I experience sheer joy on the days I feel good and have energy. Where does that come from?
Here in southwest Ottawa it is sunny and building to a beautiful day, as I sip my prune juice and wonder how many squares of dry shreddies I can choke down today.

Strongwoman

@blackdot
  Those nurses certainly are amazing aren't they?  
Sorry to hear about the nausea and difficulty drinking.  I have a sublingual Odansetron for when I get ileus episodes which really help as I can barely get water down when I get an episode.  Perhaps asking your Oncologist about this may or may not be an option for you?  I found that using a veggie green powder that was easier on the digestive system in water very helpful while in treatment and I have it now every morning with my Restoralax and meds.  Popsicles or freezies are good as well as they melt slowly. My elderly Aunt takes the Pedialyte freezies and will add either a full or half one to a cup of hot water when she has an episode of her diverticulitis. Perhaps some options for you?  Ginger is very helpful too.  I made my own candied ginger when my system is off and I use the residual syrup for sweetening a hot water or herbal tea.  
  Your welcome about the tips.  They were godsends and when my Mom gave me my first shower, it felt like heaven.  I needed to have the stopper in the tub and allow the hot water to collect at the bottom around my feet and the shower head on either my back or abdomen if not rinsing hair to keep warm while being showered.  I would possibly recommend getting some Poise or something similar when you first come home.  I had a few accidents that my Mom had to clean up that I had no control over whatsoever.  I was 50 when this all occurred and am currently 52. The showers exhausted me and I napped after them but it was worth it.  I also found nightgowns best and a long bathrobe.  It is what I wore for a very long time until I started to heal better and could move better. Bending over took a long time.  I got inventive with putting on my underwear.  Amazing what you can come up with! 
  As far as the chemo infusion at the 4 wk mark, I imagine you will be exhausted.  I feel if you prepare for that, then anything else is good.  Don't expect much and do what you can. The daily walks are a MUST post surgery.  I had to walk with my Dad and hold his arm at first and graduated to having someone near while I walked in case anything happened.  Every step during recovery is a celebration of sorts.  
  Know you can ask anything here and any one of us will do our best to assist you along.
  Wishing you well on this drastic change in weather day.  Definitely short weather yesterday and today in the house I put the heat back on as it is damp and miserable.

blackdot

I'm not sure why I didn't give you this information sooner but my son passed away February 20th. I guess I just couldn't. When all this hell began in December, my diagnosis and my son's, I was looking at the big picture all at once, like a solid wall in front of me that couldn't possibly be scaled, or why would you even try to scale it. It took the medical profession, my family, my friends and my neighbours and this site to teach and encourage me to go one step at a time. It took a while to realize it is not a wall. I am not alone. I am loved and so incredibly supported. Every day there is something for which to be grateful, like the bag of blueberry lemon scones and card hanging on my door handle. Or how about the crocheted hat, that my neighbour (who didn't know me, just heard about me) delivered to my door with a chocolate bar and fancy soap. And then there are the friends of my son, who just drop in to chat, bring fresh fruit and veg and pantry basics, ask if there is anything they can do around the house for me or just do it. There are the cousins who regularly send prepared meals, the friend who weekly brings a fresh tray of broccoli sprouts because they are very high in antioxidants and just maybe it will help. I have a wonderful growing stack of beautiful cards; get well, sympathy, birthday and thinking of you that I reread and redisplay. I don't imagine people know the power they are wielding when they do these acts of kindness. I don't know the outcome, we never do. I do know I have been through the worst that a mother can face. The future doesn't look easy but I'm not as scared now.

Strongwoman

@blackdot
 You are amazing......I would never have known by your posts. 
 Thank you for being incredibly brave and vulnerable in sharing part of your story. I would surmise that eating issues may be attributed to the grief you are currently going through as well.?
  My heart aches for you....and am at a loss of words for you....but know I am here regardless for anytime you need to vent. You are definitely undergoing a lot of mental, emotional and physical symptoms.
Here is a passage from a book entitled "Die Wise" by Stephen Jenkinson
"Everything we do and don't do makes a wake, a legion or waves and troughs that pound the shores at the edges of what we mean, grinding away at the periphery of what we know. They go on, after the years in which we lived our individual lives are long passed."
 My thoughts will be with you even more daily as you heal in the many ways you need to.

 

Take care of you! Let the others do what they can for you. 
I have been through a tragic event and it took a long time to get through. It was not easy and don't imagine this is easy for you either. Surround  yourself with all the love and support and heal yourself. You will get there. I was amazed at the support we received through our event. And you are right, they have no idea how even the smallest things have meaning.
 My deepest condolences to you.🙏
 

MaryCatherine

Oh my gosh Blackdot, I’m so sorry for the loss of your son. What a lot of issues you have on your plate.  I lost my 20 year old grandson last year, and I see the agony that my son, dil, and granddaughter are going through..I miss him so much, but I believe in eternal life and I feel his presence with me everyday.  What a wonderful support group we have here in this community.  Take good care of yourself 

Strongwoman

@blackdot I am checking in as it has been awhile.  How did your surgery go?  Treatment afterwards?  Where are you at now and above all, How are YOU and how are you feeling both physically and mentally/emotionally?  Let us know as I would love to hear an update and see if you need any help at all.
Take care 

Strongwoman

@blackdot Thought I would check in to see how you are doing.  When you posted last, your grief was fresh. How are you managing that now? How are you doing yourself and where are you at with your own health?  If you can send out an updated post, I, for one would love to know how you are doing.  Thinking of you in the meantime.