I've had my first 3 cycles of chemo and am booked for surgery on 13th March. Most of the visible disease on the scan is on my peritoneum, thankfully this has responded really well to chemo so far but I'm prepared for a long surgery as they'll be aiming to remove all evidence of disease.
I've found some of the posts here on the site really helpful and some of your posts about surgery meant that there were really no nasty surprises when the surgeon told me about the possible length and extent of the surgery so thank you all for posting your stories.
I've got some practical questions and I wondered if any of you could let me know what it would be useful to take in with me. The hospital say they encourage us to get up and get dressed and I'm wondering whether you have any advice on what it's comfortable to wear over the wound - I've got.some tracksuit bottoms with a soft waistband but wondered if I should buy a size up for the first few days or if anything else would be better.
Also any tips on recovery in hospital and once you're home. Information I've read up on hysterectomy talk about resting but my CNS has said that I should get up and walking as soon as I feel able. How soon did you feel able to go out for a short walk?
I'm worried that I'll be too timid about going out and then will end up overdoing it! I'm also rubbish at being totally dependant on other people so the first few weeks are going to be difficult.
I look forward to hearing from you!
Andrea
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I took too much in and just wore the blue hospital gown for 2 days- easier! Then a loose soft pair of pj trousers and my slinky dressing gown for walking slowly but surely along the corridor. Didnt get dressed in anything else I'd taken just dressed again in loose track suit bottom and comfy tops for travel home. Don't forget a cushion or pillow for putting over your tummy under the seat belt for journey home. Big knickers etc for long vertical scar - nothing to rub it hopefully
Re walking I just remember initially walking to the bathroom once the catheter was out then gently to the TV room and back a few times. I had my own room and the walk was OK but I didn't over do it. Walking helps with your bowels so try to do it.
You MUST put yourself first with this recovery. It's SO IMPORTANT to rest rest rest. Little walks to the bathroom and around the same floor,NO lifting or stretching, NO carrying etc.
For my special person we got her maternity trousers strange opinion I know but if you get the 'over the bump' ones it'll feel more comfortable and you won't feel like anything is digging in with a waistline.
Excellent news on the results of the chemo, now the next step beckons and then you can move forward.
I too am rubbish at relying on other people so that bit was a steep learning curve for me but we got there.
All hospitals encourage you to mobilise as soon as possible, just take it easy, you will probably be catheterised so that limits movement a little. I moved to a chair and back a few times initially then once I was able trotted to the loo. This seemed quite an achievement at the time and was fairly tiring, but each day you will see slight improvements.
Cushions are an important for the journey home post op, I had my husband bring me a couple, one to sit on so the car wasn't as low to get in and out of and one to hold over your tummy to protect it from the seatbelt. Cushions are also important if you feel the need to cough or sneeze, hold one over your scar and press gently to reduce the pain.
Pillows are important when you get home so you can sleep easier sat up, it will take a few days before you will feel able to lie down properly so the pillows are good, I found they helped too with wind.
As for the clothing, it does depend on the incision, mine was a vertical incision so I had to buy nighties instead of my usual pj's for the hospital and when first home. My surgeon had already told me the nature of my surgery so I was prepared for the scar. For the journey home I wore a loose dress which looked fabulous with the dark green surgical socks I had to keep on for a total of 2 weeks. To be honest I didn't really care because I was escaping 😊.
Once at home I stayed in nighties for the first few days, I found trying to dress too painful but soon got there, patience is a wonderful thing and something I normally had in very short supply but that has changed dramatically. Once I was able to get dressed I wore tee shirt style dresses so no pressure on my tummy, but it was July when I had my op so considerably warmer.
I had very short walks around the garden and up and down the driveway after I'd been home a week or so, I waited until the clips were removed before I ventured out as clothing was a little more comfy then. I would say though don't try to do too much too soon, it's major surgery and it is quite debilitating initially. Sometimes just going upstairs to the loo was enough for me and I stayed up there for a snooze before venturing back down. Your body will let you know what's best. But it is important to move to obviate the risk of clots.
Take the anti constipation drugs, your bowels will be messed with during surgery and they are sluggish post op so give them as much help as you can with good diet. and drink plenty of fluids. Take the painkillers, they're there for a purpose, I'm no wuss (I had 3 babies drug free) but needed the drugs once home but be aware that the painkillers can constipated you 😂.
Most important is that you won't be able to do very much for yourself at all, not even as simple as making a cup of tea, let others do stuff, it's good for you and also good for them as they feel they're actually doing things to help you. Don't reject offers of casseroles and food etc., or from people who want to iron or clean for you, you can return the favours with a nice catch up once you're better.
Find some good TV programmes you like for when you're resting, I found the Big Bang theory on daytime TV and had to be careful not to hurt myself laughing, I'm still a fan to this day 😊. I also read so many books and made lots of knitted items to keep myself occupied.
You'll feel better post op I'm sure because positive steps will have been taken to deal with your cancer, I know I did.
Sorry for the extra long reply, hope it helps x
Sending lots of best wishes, big hugs and love ❤xx Jane
Thanks for your reply. I'm also having a vertical incision and I've bought a couple of nighties as I assume I won't want to wear anything over it.
It's also good to know what you were able to do and when so that I can pace myself.
My husband is going to take a week off when I come home and then work at home for a week and he's been learning to cook since I started treatment (and is proving to be quite good at it), a couple of my friends are also organising a cooking rota to help out and my 18 year old is still at home and studying for A levels. She's not quite there with cooking yet but she should be able to get things in and out of the oven.
I'm feeling emotionally a bit up and down at the moment as there seems to be a lot to do to get ready for the op. In many ways it will be good to get it over with so that I can just get on with recovery.
I too used the hospital night gowns and only changed into my own clothes the day I was leaving. I had a skirt which had a tie through the waistband so could be done up as loosely as was comfortable. Walking on the ward was limited to firstly the chair alongside the bed; then the loo and shower and then the coffee / tea making room all with the essential support of my wonderful nurses. Dressing gown and slippers needed, nothing fancy required as you'll be wearing some really ugly compression stockings.
Take noise cancelling ear phones if you have them as it can be quite noisy just when you want to go to sleep. I also took an eye mask to keep out unwanted electric light but didn't use it. Don't forget chargers for your phone / iPad / Kindle or equivalent. A mirror and wet wipes so you can clean-up and do your make up from your bed for the first couple of days as you won't be able to get out of bed without the nurses help.
Once I was home, I found I could walk on the straight fairly well albeit slowly. However, getting into and out of bed / chairs / cars was more a problem but each day was better than the previous.
Helen
PS Every time the nurses give you an injection in the thighs, watch very closely how they do it, because you will be expected to do these injections at home (help prevent clots along with the aforementioned stockings) and I'd never paid any attention!!
I can honestly say for me the anticipation of surgery was perhaps more difficult than surgery itself. 😬
Also, my cancer was mostly on peritoneal and on omentum (which was removed).
From a clothing perspective, I did not want anything with a wasteband pressing. I bought several loose very soft nightshirts. Mostly short sleeve due to my hot flashes. I also got a robe that zips up instead of ties. I wore this when I was able at hospital and at home as well. for my ride home I think I wore lose fitting leggings and baggy sweatshirt. Nothing that pressed tight across belly.
I then introduced baggy low cut sweatpants. Still nothhing with tight elastic. I was also able to wear very stretchy leggings but after awhile, were not as comfortable as lose fitting sweats. I have a pair that are low waisted and fall below insicion. These are my favorite. And of couse I brought cozy socks and slippers.
Other useful items:
Pillow- i liked having my own pillow at hospital. And i placed it over my tummy but under seatbelt on ride home and worked perfectly to keep seatbelt from irritating me.
Pack Gentle lotion, toothpaste and toothbrush. I brought premoistened towelettes to wash my face and refresh my body (While there, I personally chose not to shower at hospital) i also brought my own wash cloth. I brought throat lossengers to have handy to remedy any coughing. But I didn't need them.
I lost my hair so brought a few beanies at different weights depending on if I was hot or cold. I even was able to wear one into surgery which made me feel more cozy during the waiting and post- op recovery periods.
I loaded up with phone, ipad and chargers.
I was told to bring peppermint tea to help with gas.
As for getting up and walking- I actually wanted to the day after surgery 😳😬😃💪🏻. I suprised myself as I wasn't planning to push myself so quickly. For me, getting in and out of bed required effort but once on my feet it was okay. Walking helps with passing gas. Just going to be blunt- you will have it and getting it out is a big benefit. Walking helped a great deal. I was then able to have catheter out and pee on my own which was also not a problem for me. I wore my slippers to walk around but some like socks with the nonslip strips on bottom.
The pain meds really did the trick in hospital. I felt really cared for and well managed. For me, discomfort grew after two days because of some extra pain blocker they gave me during surgery that numbed the area for about 48 hours worse off. If you find pain breaking through ring nurse and get meds increased. I did and again was well managed.
I was also drinking coffee and eating day after. This may not be same for you depending on details of your surgery. I did not 💩 in hospital. It took a few days at home with big dosed of my constipation /softener meds.
Please don't hesitate to ask any more questions. My surgery was Jan 19 so still fresh in my mind and happy to answer anything I can! I know the lovely ladies here will also add to my list. Try to relax a bit, i was so relieved that it was not as bad as I built it up to be in my mind.
My cancer is also mainly peritoneal and in my omentum - they're undecided whether it's ovarian or primary peritoneal.
Do you mind me asking how long your surgery took and I know we're all different but I'm wondering what they removed and also how they treated any disease on your peritoneum.
Are you having chemo as well?
Thank you for the advice on clothing and the warning about wind...another good thing to know in advance.
It's amazing that you were up so quickly but I know they push you quite hard in hospital to minimise the risk of infection and get you home as soon as possible.
I'm not too worried about the surgery itself as I have complete trust in the medical teams who have been treating me, they've been amazing. I'm more concerned about my ability to manage recovery - mind you I was terrified about starting chemo and it's been nowhere near as bad as I'd expected even taking into account my allergy to the taxol.
Hi Andrea- I am based in California and haven't managed much sleep so happy to be of service ☺️
It was initially discovered by a trip to the ER (sudden bloating- looked pregnant out of blue) tests included a Ca 125 test and ct scan. The ER dr's referred me to a biopsy of my ascites and my oncologist.
My first scans were overwhelming- caking all over my omentum and peritoneal lining. Initially diagnosed as peritoneal cancer. I started carbo/taxel quickly after to shrink it before surgery. Had new scans and responded well, caking decreased a good amount. One more big dose of chemo (#4 ) and then surgery on jan 19th. Post opp, diagnosis changed to ovarian or falopian tube primary, but still slightly inconclusive if it began in ovary or falopian tube. My dr told me Treatment for ovarian, fallopian and peritoneal is the same.
3 weeks post op, back in chemo to "clean up". Same carbo/taxol regimen. I go today, so have to get ready soon.
I honestly forgot how long they said my surgery was. Maybe 4-5 hrs? But did say they saw how well the chemo did due to residual dead cell marks inside me. I think I recall from pathology report small tumors found on ovaries/fallopian and 4 lymph nodes from pelvis were removed, two had cancer in addition to the standard removal of all gynocological organs +omentum. The big stress for me at moment- my dr (a very well regarded surgical oncologist) said there are two very small dots on my diaphragm that were not removed. She believes they have already been on path to death from initial chemo and post op chemo will finish the job. This was all she said was visibly remaining. Of course I think about these spots daily. 😳
While I do have a summary of pathology report I don't have a surgical report which I have been a bit hesitant to push for. I like key information but too many details cause me extreme anxiety, and exaggerated fears, so not sure I want those surgical details just yet. The info about the spots on diaphragm are causing me huge anxiety and she assured me that was all that was visibly remaining.
I have to get rolling, feel free to reach out any time. Also happy to email if you prefer.
💜🙏🏻 Anne
Hi Andrea
Welcome to our lovely group, so sorry you've had to join.
I'm only just in front of you, I was diagnosed in October 2016 and had my debulking (awful word!!) surgery 4 weeks ago. I started back on chemo today for 3 more sessions. I too am 3c.
My surgery was expected to be straightforward but I ended up with a stoma, but it was the price I paid for a full clearance. Can't pretend it didn't come as a shock but I'm slowly trying to accept that it was necessary. This will hopefully not be the case for you but I just want you to know that if it did you WILL deal with it.
In terms of what to take in with you, like the other ladies I took far too much. But do take peppermint teabags, mints, iPad, earphones, your own pillow, nighties rather than pj's as you will have a catheter initially, definitely the cushions for the journey home, lip balm, handcream as its dry air in some hospitals.
The very best of luck, you may feel quite ok afterwards but if you don't don't despair, you will gradually feel better. Take all the help offered and for once just allow yourself to be pampered by those who love you. You will be back on your feet soon enough
I hope you're recovering well and the return to chemo has been OK. It feels like quite a lot to ask when we're also recovering from major surgery but it's necessary.
I know the surgery is a bit of an unknown and having read other threads before I feel like I'm prepared for almost anything in terms of the op but I know it's a bit of an unknown until they get in there - I've been told to expect 3 to 12 hours surgery.
I agree that debulking is a horrible word for the surgery!
It is a rough surgery but everyday gets a little better. I started 18 rounds of chemo two weeks post op. You should walk and try to move as much as possible. Takes drugs for pain and sleep as much as you can. Sleep and rest is so important for healing. Wear loose clothing and think positive. Good luck!
I was told I would have 'ultra-radical' surgery which could involve the removal or partial removal of multiple organs in my peritoneal cavity. When I woke from surgery they had only taken my omentum where my PPC tumour was, but they had thoroughly searched all of my organs for traces of cancer. They didn't give me a hysterectomy or remove any other organs because all the disease was at the top of my abdominal cavity, some which would possibly have compromised the blood supply to my stomach if they had removed them. The surgeon felt that chemo was the best option, so I resumed Carbo/taxol 3 weeks later. I was in hospital for four days and was able to walk around on the day after surgery, albeit slowly. That was in November last year and I have now been told that at the moment, there is no evidence of disease. I am having three weekly Avastin which has, so far, not given me side effects.
All the advice given by the ladies above I would endorse, but take care with the design of your nightwear - I bought some nightshirts from Primark which had decorative buttons down the front on a placket (technical term for the strip of fabric on shirt fronts). Unfortunately this ended just at the top of my scar and irritated me badly!
Sorry for the ramblings, I'm having trouble getting to sleep - I have to be up at 4 to go on holiday for the first time since diagnosis - skiing in Italy. So excited, but a little nervous too, but I feel strong enough to ski and to enjoy the apres ski too. I think the consultant said something about moderation, but I guess that's a relative concept!
Stay strong all, thanks for your continuing support.
It's really good to hear your experience. My surgeon also specialises in ultra radical surgery and I've signed over rights to whichever abdominal contents he needs to remove.
I've been told that a hysterectomy is a definite and they'll remove my omentum. The rest of the operation will depend on what they find and it's great to hear that you now have no evidence of disease with a shorter surgery.
I hope you have a lovely skiing trip!
Andrea
Really good suggestions so far, to which I would add Quies earplugs if you don't have noise cancelling headphones and layers..... I've found wards to be on the cool side sometimes and it's good to be able to put a cardy and then a shawl round your top if needed. Loose PJs rather than nighties keep you warm and decent when walking around. Good luck!
I had a lot of cancer removed but the surgery itself was under an hour. It was quick to cut down on infection. I wore a split skirt and top to the hospital. I wore the hospital gown for the 2 nights there. I only walked to the bedside commode. I wore my gown, house coat and house shoes home. I took a pillow to sit on and one to hold against my stomach. Take the pain pills so your body can work on healing not work on fighting pain.. Make sure you have plenty. You won't get hooked on them as long as you take them when you have pain. Make sure you ask for nausea meds in case you need them at home. Have Miramax or some other constipation med to take. Colon is slow on waking up and pain meds cause constipation. I borrowed a bedside commode to use the first few days. Get lots of rest. The nurse fitted me with a binder before leaving the hospital. If you have steps at your home, take them one at a time placing both feet on each one. You'll need someone to stay with you at least the first week. Have soups and microwave meals ready before you go for surgery. Make sure your sheets have been washed and your house cleaned before you go to the hospital. I hope this helps. Blessings to you
Hi Andrea, I would advise nighties rather than pyjamas in hospital (no waistbands) and a dressing gown. Don't bother with clothes in hospital, just something soft and stretchy to come home in. Re the walking, when I got home, a member of my family came round for an hour every day and went for a walk with me. Initially about 50 yards building up to a 20 min stroll. As I was on my own after the first week, I was doing light household jobs and getting some exercise in the house. Do nothing heavy, and you will find that getting up and showered and dressed will exhaust you anyway so sleep when you feel the need. I was having a morning and an afternoon nap and still sleeping at night!
Hi! I had a longer than usual hospital stay after debulking.. 10 days.. I took a full backpack of stuff I thought I would need and only used an eye mask, book, and toiletries. I lived in hospital gowns and the hospital provided non skid socks. I was up and walking day 3. I had gas pain but it wasn't bad.
I also had my second chemo while in the hospital and went home the day after. I was very mobile but not allowed showers yet or lifting.
Hi Andrea. I suspect you'll be more wanting to rest than to exercise. On my first day post-op, I woke up feeling so comfortable. Didn't want to move at all. In comes the physio, pushing me onto my side - already ?! I never got myself comfortable again that day & still feel resentment about that. It was too soon.
I feel the cold and I needed warm sleeves. I'm on the short-side and found getting in and out of bed was a bit difficult. When you leave hospital, watch out for uneven roads - speed bumps or sticks in the road etc - it all jars you. So go very slowly over those. Good luck. Pauline.
Great advice as usual from all the lovely ladies, so I have no more to add just to say take care and like you I've always been so interdependent, be kind to yourself and take the help all will be well, Try to just take small walks around the house you will be surprise how fast you will bounce back,
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Surgery completed.
Anyone currently taking tamoxifen for OC.
Successful surgery 
De-bulking Surgery
