Im New Here - OC Debulking

[Tv01]

Im due to be admitted to hospital this wednesday with the surgery going ahead on xmas eve and have been told to expect to be in for about 10 days. Im petrified , been told I have 25cm x 20cm tumour and will have total hysterectomy appendix spleen and ommen and peri something deposits removed. Maybe also bowel removal. I have been reading a few post for info would taking peppermint tea in with me help do you have any other tips for me. I am so new to this .....Thankyou for taking the time to read this Merry Christmas xx

[Maus123]

Hi TV01. The prospect of this disease and the big surgery is scary for sure. Sorry you have to go through it, and welcome to this community.

But as someone who had the big surgery twice and is probably the most plaintive, whingy and chickeny person on the planet when it comes to pain and medical procedures, I hope I'm not overreaching when I tell you it is doable. The first few days post-surgery can be a bit much to take in, but you should feel better every day from that point onward. Maybe the following tips will come in handy?

- peppermint tea helped me deal with post-surgery wind (sorry, tmi).

- my bowels were quite sulky after surgery and did not want to come out of strike mode to resume normal functionality for several days. That was even without any actual bowel resection. The first time around, an enema helped. The second time, stool softeners were the solution. It will come on again, no worries.

- protecting the wound became my number one priority for the first few weeks e.g. by rolling up a towel and gently pressing it against my stomach when laughing or coughing, by getting out of bed in the manner shown to me by a nurse, by turning my head sideways and looking up when coughing/sneezing, not lifting anything heavier than a cuppa etc.

- there should be a number of pain control methods available to you; I've had an opioid based pca the first time and an epidural the second time. Personally, I preferred the epidural as opioids made me a tad nauseous, but in any case the most effective strategy was to speak up early, loudly and frequently when I experienced pain... basically: COnstructive whinging works! Made it easier to keep any oncoming pain under control, and it wasn't bad.

- the first day or two I felt like a high security prisoner.. basically 'chained' to the hospital bed by various tubes . That can be scary but they disappeared one by one as I got better, so it was a short time temp inconvenience only.

- bringing a few hygiene/pampering products helped me over the first few days of feeling grubby and not being able to shower initially: a shampoo cap, wet wipes etc.

- bringing a USB charge cable extension (for my phone) proved to be vital too, as the power outlet was about 2.5 m from my bed, both times

- I was told it's possible that part of my bowel could get taken out and I could end up with a stoma. Depending on what the surgeon told you beforehand and what they find in the operating theater, that could be a possibility., But it isn't certain. I woke up both times to find I did _not_ have a bag. Even if you need one, you will receive a lot of help with it, and oftentimes it's only temporary and will be reversed later.

- I didn't bother with my own nightwear during my hospital stay as the post-surgery body tended to be a tad messy at times. I was fine with messing up the hospital gowns though.. they could be switched whenever needed and there was a neverending supply after all . For the time after, I bought some extra large undies and some camisoles, so the wound/scar wasn't rubbing against a tight belt or waist band. Essentially, just loose, soft clothing.

- it's ok if you don't feel like seeing many visitors first. This is about you. If you want to be alone, that's your right. I told everyone but my husband to stay away until day 3. But whatever makes you feel better is the right choice for you.

- I remember texting my husband soon after waking up: 'I feel soooo good.. the evil bits are gone!' . Hope you feel the same

Best of luck and maybe after a few days, you can let us know how you feel? Will think of you, and hope you have at least a little bit of a Christmas feeling. xx. Maus

[Jenjill47 in reply to Maus123]

So well described Maus! Your ideas are great regarding all the things that you need for this surgery. Mine was not as complicated as yours - 5 hour debulking surgery. I got so cheesed off with all the interruptions every 3 hours by the nurses (I'm a nurse, so I understand). My bed linen was on the floor every morning - those hospital beds are not vey comfortable! In the end they said I would be better off at home!

TV01 I'm sure you are in the best of hands and take Maus's hints - we are thinking of you and please let us know how you are going.

[Lind58]

Best of luck! Remember you are stronger then you think. With the right support system and help - you will be the on the road to recovery quicker then you think. God willingly surgery goes well and all the very best to beat this horrific disease. You are in my prayers

[SASSY196]

I know it's a bit corny but perhaps think of it as the best Christmas present ever, the gift of time. I was petrified when I had exploratory surgery which showed cancer was initially inoperable so after some chemo and it became operable I was beyond grateful to be able to have surgery. This is a terrible thing that has happened to you but I'm so pleased they can operate. You have every right to be terrified but they have you and I am confident it will go well.Try not to expect much of yourself post op , I was in 11 days and slept a lot but a little gentle TV or music will probably be important, to if you have one take a tablet loaded up - modern family or schitts creek are gentle and kind programs, some wash stuff, slippers, loose comfy clothes although I only got dressed day 8 because had drains in, a notebook and pen - you may leave hospital with quite a lot of meds so it's good to take notes , a phone and charger, maybe a few food treats . My husband gave mea toy rabbit when I started this journey, I call it my courage and he was in my bed all 11 days, I think he may even have been in HDU- he even went for a CT with me (!), face masks so you have spares, hand gel.

Also once home feet up and let yourself be looked after or if alone take it easy.

Anyway on Christmas Eve I will be thinking of you - you got this xxx

[candyapplegrey]

hi TV01, we're in a different situation now, with covid. i had my surgery in july and could have no visitors. it was tough. i don't have a smartphone so had to take a laptop but a lot of the time it was too awkward or i felt too groggy to use it much but when i did, i could listen to music or watch a tennis match. i also brought a baby doll with me to cuddle and to be my visitor as it was lonely. not nice to face it on christmas eve but you will be ok. some very good advice from the ladies here, as usual. this group has been a great support for me. also if you want to find out anything, macmillan is brilliant. i went to them with lots of medical questions. best of luck with it. will pray as well. love candy x

[Brum1966]

All the very best to you what the others have advised is excellent so I have nothing to add to it except to say if I can do it you can! Big hugs xx

[Nus38]

Hi....wishing you well with your surgery. I had a hysterectomy in August 2020 and debulking surgery in October. Just remember to take it easy when you come back from hospital rest as much as you can and when you feel up to it small walks are great for getting strength back. Apart from my big scar I feel almost back to normal.

Love Nus

[Realistic]

Bless you, and l am sending all my love and positive energy for a speedy recovery. Love & hugs sent your way and keep fighting its the only way. Merry Christmas & Happy New Year for usall hopefully. Love SheilaF xxxx

[Ruebacelle]

[edited by moderator] trust the nurses but also yourself and your instincts. They may take less it depends on what they find. Good luck. Stay strong and laugh. Hugs from france

[mizpurple]

If you have a device, headphones or ear buds are essential, plus a long charge cord as already mentioned. Audio books are great, as are apps for meditation or sleep. Get the hospital Wi-Fi password set on your device as soon as you arrive. After surgery, take every opportunity to walk around (Safely! Don't fall!) Being upright will help your bowels. Push yourself to drink water so your bladder will get back to normal functioning. Plan for lots of recovery time before you start easing back to more normal life. Yes, it's scary, but you can do this! You really can! All the best for a speedy recovery! Deb in Colorado

[Tv01]

Thank you to everyone who has replied. Everything is just so very daunting. I have a tablet for audiobooks, kindle etc . I will take a small pillow in for myself and have peppermint and ginger tea bags. I am 62, live on my own and have no children with limited family support. Thankfully I have good neighbours who will help afterwards. This has just knocked me for 6 as first went to the doctors just over a year ago with pain and solid bloated stomach and they put it down to H Pylori which I tested positive for. Even after a course of antibiotics and several months later I spoke to them and said that I still did not feel well, all they said was that my stomach had to take time to heal. I did everything I possibly could used probiotics went gluten free etc. In October I contacted them again as stomach still looked full term pregnancy and felt unwell and they sent me for gastrientrology appointment who after giving me ultrasound then referred me to gyne . Since being referred to gyne everything has been at a fast pace, thank god and i am so thank full for everything I just feel so let down by my gp. I am usually such an upbeat person but as the operation gets closer fear has set in. I just have to TRUST everyone who will be attending to me. Once again I thank you all for your kind words and once out of hospital and back home will come back on here to update everyone. I am sure I will need more advice Jennie xxx

[Everhope in reply to Tv01]

Jennie, I have only one tiny practical bit of advice to add to all the wonderful advice in other posts. I also live alone, with limited family support but wonderful neighbours so I suggest you stock up on food items that you enjoy & get some frozen meals to store in your freezer. You can then eat as & when you like!

Good luck on 23rd, I found the waiting & anticipation worse than the actually surgery.

C

[Tv01 in reply to Everhope]

Thank you for your kind words xxx

[candyapplegrey in reply to Tv01]

Just to let you know that you're not the only one to have been let down by a GP. I first had symptoms in 2017 and GP said it could be something bad, sent me for blood test which showed nothing. Then all through 2018, 2019 had different symptoms that neither I nor the GPs put together. September 2019 saw a GP who said they would refer me for an ultrasound. Never happened. May 2020 original symptoms came back, spoke to another GP and he said there was no point doing a blood test, I needed to see someone. Then suddenly June/July huge rush for scans, etc., diagnosis, operations. chemo.

I know from talking to district nurses that I am not the only one this GP practice has missed.

Let's hope you are on the right track for treatment now.

Candy x

[Tv01 in reply to candyapplegrey]

thank you Candy for your kind words xxx I know it is difficult for gp to diagnose but still feel let down, I sincerely hope that you and all the other ladies here will continue to be well and have the best holiday period you all can possibly have xxx big hugs to everyone Jennie xxxx

[Barlow1951]

Hi Jennie, I would agree with Everhope about stocking up with ready meals for the freezer. I too live alone and following recent eye surgery, was unable to wear glasses for 2 months. I discovered Cookfood.com , which delivers healthy ready meals with various options and covering different cuisines. Also there’s oakhousefoods.co.uk which has an extensive list of meals, many of them more traditionally British favourites, but they also offer small portions as well as regular size, for when your appetite needs tempting. Between these 2 companies I found meals much less of a hassle than when recovering from my hysterectomy 5 years ago and really wished I’d known about them sooner.Everyone has given you some great advice, so I do hope that your surgery goes well and that you make a smooth recovery.

Best wishes, Barbara

[Tv01 in reply to Barlow1951]

Thank you Barbara xxxx

[RoseMS]

Sorry your GP let you down, same here. But my, getting the surgery on Christmas Eve, that is kind of amazing. Good luck with it, I had the whole thing you describe March 25, discharged March 27. Far too early (it was COVID days). Problem surfaced next day and went to A&E. ....constipated!! The bowels dont work well after being ‘insulted’ during abdo surgery. Its very important they start working before you are discharged, please dont go home unless this issue is dealt with. Good luck and you are in my prayers Tv01.

[Tv01 in reply to RoseMS]

Thank you fore the advice Rose xxx

[bamboo89]

I have a couple of things to add to what everyone else has said - I had my surgery at Queen Charlotte's/Hammersmith hospital, and there, you wake up on a morphine pump, Well, I say wake up, let's say you become conscious but obviously, the morphine keeps you sleepy - you press the pump yourself for pain relief every few minutes. That morphine pump is in place for two days - you also have a catheter (so you don't have to get out of bed to do a wee) and iv fluids for the first day. Thing about morphine is, it makes your mouth really, really dry (think Gobi desert) so when a nurse asks you something, you find your lips appear to have been superglued to your teeth and you can't answer properly - some kind soul gave me a small pot of vaseline, which I put over my teeth and lips, so I recommend you take some in with you in case your hospital has the same procedure.

The other thing is bowel surgery- that means you won't be eating for some days. When the iv fluids are taken down, you can drink, and do drink plenty - the catheter is usually removed at the same time as the morphine pump and iv fluids. Once the morphine pump has gone, they will offer you painkillers, usually paracetamol -if you find those aren't sufficient to keep the pain down, you can ask for something stronger, though most of us on the ward did not need to do this. I had some large bowel removed and rejoined - I can't say I suffered any wind at all, that came a few days later after I got home and was able to eat again.

Queen Charlotte's also removes all dressings when they take the morphine, catheter and iv fluids away, and then they want you to have a shower every morning, not least to keep the wound clean. The nurses will help you with this. After that, they recommend walking about as often as possible - the corridor outside our bay always had 3 or 4 women shuffling up and down (including me) to keep moving. I remember a friend who visited telling me to stand up straight as I was shuffling along -infuriating, I was so cross I pulled my gown up to show her the wound and asked her if she thought she could stand up straight 3 days after such a surgery, because you can't. But as the days pass, you get more upright...

I took in lots of knickers that were a size or two bigger than I usually wear, but I never wore them for 8 days, nor did I wear any of the nighties I took with me - as someone else said, there are plenty of gowns available - I even used a second gown as a dressing gown, so I needn't have taken my own. The other thing is, you won't want anything tight like trousers round your middle when you go home, so plan on wearing a dress to go home in if you have one. I confess I went home in a wool dress and legwarmers pulled up straight over my bare legs (it was winter), no tights because of the pressure from the waistband and no knickers - I still had staples in and anything round the waist was catching on those. I wore the enormous poly cotton knickers I bought specially for post surgery for about 3-4 weeks afterwards. The staples were removed by my GP surgery about two weeks after surgery.

That's about it, other than to say you will get through the surgery ... and remember, don't lift anything heavy for at least 4 weeks after you get home (that includes a full kettle of water..). Regardless of that, I went home on day 9 - on day 10, I got up and cooked a full English breakfast, so its surprising what you can do... what I couldn't do after a daily shower was dry my legs below the knee, nor my feet, needed help with that, so I paid a carer to come for an hour each morning for the first week (I also live alone) to help me shower and dress. Good luck🙂

Miriam

[Tv01 in reply to bamboo89]

Thank you for your good advice and words of comfort xxx

[tutti]

I spent Xmas2004 in hospital after major surgery and couldn’t go home because of a sulky stoma so I was fluid only Xmas day. However a wonderful male nurse gave me a shower and hair wash despite several drains and drips. best present ever.My husband went for a long walk then visited me and on Boxing Day he was invited to friends so it wasn’t too bad.Peppermint tea is definitely good and as I ruined a few nighties I would definitely recommend using theirs.

Good luck Vivxx.

[Tv01 in reply to tutti]

I have loads of peppermint tea thank you for your advice xxx

[Petrolhead]

Best of luck with the op. Lots of good advice here. One thing I would recommend is the pillow you are taking in with you is readily available to put under the safety belt if you are returning home by car or taxi. Believe me those uneven roads and potholes are lethal ! Protect that stomach.

Best wishes

Fay

[Tv01 in reply to Petrolhead]

Will do thank you xxx

[Maus123 in reply to Petrolhead]

Hi Fay. Is that advice for normal people's driving or for lively zipping around the bends in a sportscar? xx

[Petrolhead in reply to Maus123]

It would be if there was room for my stomach and a pillow. 😂 However only room for me!Will be zipping out on Boxing Day for my usual birthday run and stopping for a coffee. Live the highlife me. X

[Maus123 in reply to Petrolhead]

Have a lovely birthday, Fay.

[Lilygums]

I totally agree with all comments on here. I had my surgery last Wednesday and was warned that I could have removal of spleen, part of bowel etc along with omentectomy and peritonectomy. After 6 hour surgery I was placed in 1:1 recovery care and was back in the ward that evening. I was delighted to find that the alien had been evicted and they hadn’t left me with a stoma or removed the spleen but I would have coped with these because they were part of my life prolonging surgery. I had morphine by PCA and the first couple of days were a blur but after that things improved rapidly and I was home by teatime Sunday, despite being told that my stay would be 7-10 days! Take each day as it comes, keep your pain managed and don’t be afraid to ask for anything - the staff are wonderful. The only other recommendation I would add is to take some ear plugs and an eye mask as it is always noisy and bright at night! Good luck with your surgery, please don’t worry - you have many, many virtual hands holding yours all through this xx

Sue

[Tv01 in reply to Lilygums]

Sue thank you so much for not only yours but everyones good wishes im a bit self absorbed at the moment but promise to update everyone once i feel better Merry Christmas xxxx

[KH59]

Hi, I had my debulking surgery done 8 weeks ago now and spent 2 weeks in hospital. I initially suffered symptoms of what I thought was food poisoning. This was a sudden onset of severe griping abdominal pain, vomiting, diahorea and sweating which lasted a good few hours before subsiding. In the following 2 weeks I continued to have pain and headaches and nausea and finally a very bloated distended abdomen. My GP diagnosed gastritis and prescribed Omeprazol (antacid meds.) This was all done over the phone due to their reluctance to see me due to covid restrictions in place. Not getting any better I spoke to a different GP who then prescribed a irritable bowel pills. Not getting any better the GP agreed to physically examine me! I was referred to both Gynaecology and Gastroenterology and then found out I had a large mass in my abdomen which they thought were ovarian cysts. The mass turned out to be a large GIST tumor measuring some 20 cms. The surgery involved total abdominal hysterectomy, removing ovaries, womb, omentum, some lymph nodes and a bowl resection to remove the tumor. I didn't need a stoma bag thank goodness. I lost a lot of weight during my time in hospital and it has taken me until now to regain most of my strength back. The incision itself has been totally fine but I did have some pain and discomfort as my bowels went on strike. I have to say an anenima worked wonders for me to get things moving again! I agree with others here, do not leave hospital until your bowels are working properly again and you feel ok. Take earplugs and an eye mask so you can get much needed sleep. (I forgot mine.) I did not feel like reading or doing anything that meant I had to concentrate too much. I bought a new fluffy warm dressing gown to wear which I found comforting to use as an extra blanket too. Essential for when you have to sit out of bed in a chair. Some nice smelling body wash like Aveeno Baby, moisturizer and a nice shampoo and conditioner as my hair got really tangled up. Be patient with yourself, not everyone recovers at the same rate, we are all different. I live on my own too and it was great to have a back up of food shopping either tinned, frozen or long life. You may not feel like eating much at first but you need to stay hydrated and nourished in order to heal. I was prescribed some Actasolve supplement shakes which have been great for times when you just can't be bothered. Much better than Fortisips which can be thick and sickly. Eat small amounts little and often, rest when you need to and you will get there! Hope your surgery goes well. It's very easy to get yourself in a tizz if you live alone and don't have anyone to talk to about such things. The surgeons have done these operations many times before so put your faith in them. If you don't understand anything don't be afraid to ask questions and do tell them if you need more pain relief. Keep asking until you get it. All the best to you.

[Tv01 in reply to KH59]

thank you so very much xxx

[delia2]

I don’t have any advice to add but sending warm hugs and positive thoughts that you will fly through surgery and find yourself on the road to recovery. I focused on getting the horrible cancer out of my body. Be as nice to yourself as you can. Xx

[Tv01 in reply to delia2]

thank you it helps xxx

[K95m]

Very good advice from everybody. I’m a nurse so knew what to expect in a lot of ways but it is a very scary time pre operation. As somebody else said take it day by day., please don’t expect too much of yourself. Saying that get out of bed as early after surgery as you can.

When in bed sit upright as much as possible for your chest. Do chest exercises every hour or so when you can. You do this by pursing your lips and huffing as if you were trying clean your glasses. As someone said always support your wound either with pillows or a towel. Deep breaths every hour too.

The physios will be your friend also !

Please do not be afraid to ask for more pain relief, nurses would always want you to ask. You cannot do any of the things you need to do to get better if you are in pain. Please above all be kind to yourself, it’s a terrible diagnosis to be sure but acceptance is key so that you can get on with what you need to do to get better.

Read what you can around ovarian cancer but ignore statistics. Thousands of women in the U.K. are thriving with this disease, and you can be one of those.

You will be in safe hands , try to do nice things between now and tomorrow, a hot bath etc and the very best of luck.

Kay

[Tv01 in reply to K95m]

thank you for your kind words and advice too xxx

[ILoveLexi]

Hi Jennie,

Lots of good advice here. I feel for you, I had my debulking surgery in October and was really scared beforehand, but it went well. My tumour was something like 11cm by 14 and I had omentum and spleen removed too, as well as cancer scraped from my bowels, diaphragm, and various other places, had to have fluid removed my lungs also. They said I'd probably have a stoma but it turned out I didn't need one.

For me the first two to three days afterwards were a bit ropey, I couldn't eat and vomited a few times, but soon began to feel much better. One thing I was glad I took in was a box of boiled sweets, they helped with the dry mouth and also when I could only drink water I felt I was at least getting some energy and calories from them. I was in for ten days ( that's how long it took until I had a bowel movement), couldn't have visitors, so my phone was a real sanity saver.

Sending you good wishes and positive energy x

[Tv01 in reply to ILoveLexi]

thank you for your advice i have some werthers sweets so will take them. last night was the best nights sleep i have had in ages thank you again, xxx

[Melody6]

Hi there, I just wanted to wish you the very best of luck for your surgery - it is terrifying - but you’ll be fine and so relieved once you’re on the other side. You’ll do great - do let us know how you are. Love from Mel 💖 xx.

[Tv01 in reply to Melody6]

thank you for your kind words mel xxx today i get admitted and last night was the best nights sleep i have had for ages. i have taken everyones advice on board and i thank everyone for their kind words xx i will update everyone once i get home and able to get on my laptop. merry christmas everyone Jennie xxx

[juliamillen]

Don’t worry about it too much it willSeem easier than you thought. You will be given a morphine pump to control any discomfort and you won’t be able to eat much for a couple of days. Thinking of you and wishing you luck and be kind to yourself when convalescing you will need to sleep a lot and lie on the sofa and watch tv.

[Summergold2]

Hi there just wanted to reiterate all the positive thoughts and vibes. All good advice! You are so brave to reach out so early! I wish I had known about this site before I went into surgery. I am in the United States and our Gyn drs don’t have much to give us it’s mostly research on your own! Keeping you in my prayers thoughts. Surgical skills now are amazing so are the anesthesiaologists (spelling)GOOD LUCK AND FAST HEALING!

Hugs from California

[notforhire]

I am 78 and was due to have ovaries and ovarian cysts removed on Christmas Eve but due to developing a blood clot in leg have to postpone for another month. The suspense is killing me emotionally. I have to take two shot of blood thinner in my stomach twice a day. I have to go thru all the procedures again to ready myself for surgery. On top of everything my husband has dementia and is driving me emotionally crazy. My emotions are working overtime waiting for the surgery in another month after waiting already for a month for an appointment.