Getting ready for surgery

[Mel10]

Hi all, I was diagnosed with stage 3c high grade on December 15th. I have been through 3 rounds of carbo/taxol and am scheduled for surgery March 19th. My CA 125 was 899 at diagnosis and was 68 after my 2nd round of chemo. I just know I am going to beat this! But I am getting nervous about the surgery. How bad is the recovery?

[Irisisme]

Hi Mel, we are all different so I can't tell you how you will be, only how I was.

Firstly, I was lucky in that my surgeon got every bit bigger than 2 mm - and I didn't have a stoma or lose my spleen. The surgeon did find I had seeding everywhere, so not so good there. Some will tell you what it's like to have a stoma. I can tell you what it's like to have post op ileus - that's a paralysed bowel. It wasn't nice and involved projectile vomiting green bile - but I got over it - and that's the message I have for you. Even if you feel like sh** after your op, it doesn't last.

Mostly it will hurt to move for a bit - hold a rolled up towel to your stomach when you start to get up, that helps. Get moving ASAP, that's best. Make sure they give you something to counter constipation as well as pain meds, you really need to avoid constipation ( unless you have a bag, of course!).

Whatever happens it will probably have happened to someone on this site before you - and they are still here to give you support. Ok, so all surgery has a risk of not waking up, but it's such a minuscule risk these days.

After your op be very kind and gentle with yourself and don't try to rush your recovery.

I can tell you that I'm really glad I was 'debulked', I believe it has given me so much extra time.

Welcome to this exclusive club and keep us up-to-date on how you're doing.

Good Luck,

Iris XX

[Flora3]

Hi Mel

Fully agree with Iris that we are all different, so respond differently. For me, the worst part was the pre op session! I was (quite correctly) warned about all the possible side effects & consequences. So, I was so relieved, when I came round with no sore throat, broken teeth, no stoma etc etc! I experienced nausea just once, after I gulped some water too quickly (I did feel very thirsty).

Recovery went smoothly too. I did exactly as I was told, being lucky enough to have family around to look after me.

Tips: A drop of peppermint oil, in hot water really helps if you have wind/indigestion afterwards. Buy leggings & pants a size larger for comfort. Have a pillow/cushion handy to hold over your abdomen in the car and whenever else you might feel vulnerable. Get moving as soon as you feel able, & walk a little each day when you’re discharged from hospital.

Hope this helps & wishing you all the very best. x

[Lindaura]

Hi there,

I too was trepidatious about the surgery, fearing great pain and a long period of being indisposed.

It turns out that they have the pain management thing down so well, that except for the first few days, I had minimal discomfort.

The important thing is to not rush your recovery. Don't feel you have to jump out of bed and leave the hospital right away.

Everyone's operation is different. Going in to your abdomen and examining every organ, then removing every sign of cancer, is a shock to your system so profound, that your bowels stop working for longer than you imagine and your whole body is exhausted- which lady's even longer.

The constipation is a huge problem, so eating afterwards is a problem, because from your stomach, everything you ingest has nowhere to go. That can be a huge problem, as vomiting is too painful, so eat lightly and try to get your bowels moving with any laxatives on offer.

Aside from the digestive problems, my recovery was slow, but easy and the incision was tidy and healed well,

The surgery was not as painful as I had feared and the recovery time was not as long as I feared. So all in all, I was delighted with the outcome (all cancer removed or vaporised) and I could proceed to the next chemo, very optimistically.

PS: Some countries offer something called HIPEC, which is a heated Chemo bath inserted into your belly after surgery before closing you up. It appears to be more effective at clearing microscopic cancer cells to avoid recurrence. I did not learn about it til after my surgery, and I don't know how a person feels after this further procedure, but seems worthy to take a look at: healthunlocked.com/api/redi...

Good luck with all this and remember you have a good resource here at Ovacome.

Best wishes,

Laura

[Nancy222]

Good luck with your surgery.

I couldn't wait until my surgery, was so keen to let the surgeons remove what they had to. I had a bowel resection (lost 8") and a complete hysterectomy. The recovery was slow but steady. Every little step is cause for celebration.

Make sure you drink plenty of liquid (ice cold water was my choice) and try to eat small, frequent meals. When I woke up in the middle of the night, I had a wee snack of a toasted white bun and cheese. In hindsight, the cheese might not have been the smartest choice but it's what I craved.

And as hard as it may be, try to walk, but don't overdo it. I live in a condo building, and at first, I'd just go out into the hallway and walk to the end and back to my unit.

My recovery was slow and I wish I'd know about meditation because once I started it, I realized I was holding stress/tension in my stomach. Once I did meditation, things relaxed and my stomach area felt more normal.

I'll post the meditation link. I've found it helpful.

Congratulations on having your CA-125 levels drop. Apparently they can go up and down so be prepared. It's a range you're looking for.

And by the way, love your attitude. Big cyber hug.

[Nancy222]

Here's the meditation link.

healthy.kaiserpermanente.or...

[Seasun36-uk]

Hi Mel.

ATB for March 19! I would echo all the advice given so far, especially drinking small sips as soon as possible, starting with a light diet (I had ileus like Iris, not pleasant) & moving asap. My best pain relief was intravenous Paracetamol & Oxycodone (a synthetic liquid morphine-type drug).

Another piece of advice - make friends with the nurses & ask for their help & advice. It's amazing how quickly you form a bond with two or three & how much they can help you. Also remember when you get home your GP can be a great resource.

Take it in stages: 6 weeks (pretty good), 3 months (even stronger), 6 months (almost 'normal'). BW, Linda xx 🌺

[Katsmum]

Hi Mel

For me it really wasn’t too bad and was able to get up and move about a little very quickly but the only pain relief was ibuprofen and paracetamol. I had a catheter which they took out a few hours after the op but maybe it was too soon as I managed to completely soak the bed in the middle of the night and was mortified! Home after two nights in hospital and got better every day. I did unfortunately have some infection in the wound which delayed things for a bit and prevented me having avastin for a couple of months but I wouldn’t be worried about having another op as they tell you worst scenario and it’s rarely that bad! Good luck and let us know how it goes!

Love and hugs 💐🌸

Jane x

[Madgenichol]

Recovery after total debulking and permanent stoma for me was not as bad as I feared. Take it slowly. Listen to your body. Rest whenever you need to. I'm two year on now. Stage 3c. It can still be tiring and hard sometimes.

[Maus123]

Lots of good advice has already been given.

I've just been through a laparotomy for the second time. The first time in 2015 (big debulking surgery), where a good number of pelvic organs and tumors were removed but no bowel resection/stoma was required. The second time for a recurrence in the pelvic lymph nodes and removal of those. For me, the first big relief came after 48 hrs, when some of the tubes were removed. I'd definitely leap at the chance for surgery again any time, should it become an option again in the future.

I would add the following:

Don't suffer quietly!!

Especially with regards to pain control, it's imperative that you keep your medical team updated on your pain levels and at all times receive the appropriate dose of medication for it. Once you experience breakthrough pain, it is much harder to bring under control again. I never went beyond a 6/10 in pain with either surgery, and 99% of the time it was considerably less and not a big issue (that's saying something from a sissy like myself).

Keep on top of wind and generally your bowels. After a few days, they may start working again (might be different with a stoma?). I found Movicol V (stool softener) and peppermint tea helpful.

Ginger helped me to keep mild nausea under control (e.g. sugared ginger snacks, ginger tea, ginger drops). Every now and then, nausea would get more severe and in my case, IV-based administration of Paspertin (Metoclopramid, MCP) addressed the issue.

Make sure you support/hold the abdomen when coughing etc. The nurses or physiotherapists can show you any number of tricks for how to reduce undue strain on the wound e.g. when getting out of bed.

Ask for help with a shower or with shampooing your hair after a few days. Makes you feel much better .

After a few days to a week, you'll feel like yourself again. Until then, just go with the flow. The nurses and doctors will take good care of you. All the best for your surgery!

Maus