Debulking surgery

[Pendle99]

Morning all, I am new to this forum. I have Stage 3 crappy OC diagnosed in Nov 2017. I have had 3 rounds of chemo and hopefully surgery on 1st Feb. I will meet the surgeon next week. Any top tips for the surgery or what to ask? Am not entirely sure what the surgery entails apart from removing everything that looks dodgy! I am prone to constipation which is worrying me. Any recommendations on what to pack in hospital bag? Any advice appreciated. Thank you in advance xxx

[MH500]

Hi

Welcome to the site none of us wanted to join but are so glad we did. This is such a lovely supportive site full of wonderful people.

I was in your position exactly a year ago. I know that you will be feeling very apprehensive but it’s something that we need to get through. My ‘must haves’ were: peppermint oil to add to hot water (for wind), extra strong mints, iPad, music and headphones, kindle, lip balm, my own pillow and pillowcase, lavender oil and eye mask.

When you see your surgeon next week he will go through the fact that he hopes to fully optimally debulk but may achieve sub optimal dependent on how things look once he goes in. He will (if he’s anything like mine!) blind you with science and outline all risks. I had the standard removals which were Uterus, Fallopian tubes, ovaries, appendix and omentum. Unfortunately in my case I also had to have some colon removed but this is not the case in many cases.

I’m a wimp but I got through it and you will too. Be kind and patient with yourself and accept any help people offer you. If it helps I’m in remission (also 3c hgs) and very physically active.

Let us know how you get on

Marian xx

[Pendle99 in reply to MH500]

Thank you so much for your speedy response and it is so lovely to know you are in remission. I will now start my shopping list! Sometimes I find it all too difficult to cope with and other days I can manage to ignore it (as best one can!).

[MH500 in reply to Pendle99]

I think that’s how we all are. One day it’s on your mind 24/7, then other days it fades more into the background. You’ve come to the right place. We ‘get it’ x

[January-2016-UK]

Ask you surgeon what he is expecting to achieve with the procedure. When you sign the consent form you’ll be asked to consent to bowel surgery. This is standard as otherwise they’d have to stitch you up and re-operate after they’ve received your consent to the procedure, but it is worrying. I remember being really pleased when I woke that it hadn’t been necessary.

Take plenty of baby wipes for the first few days to freshen up as you’ll need help getting to the bathroom, which might not be as early as you prefer. A makeup mirror so to can do your makeup in bed and face the world and the lady in the opposite bed!

Noise cancelling headphones, hospitals are noisy places, charger to charge up all your gadgets. Eyemask, Lught reading. Some easy to store and easy to eat food.

I wore the hospital nightgowns. The nurses do give you medication to help with constipation. Mine failed to work until the morning was going home, and then worked with a vengeance!

It will be over quicker than you realise.

[Pendle99 in reply to January-2016-UK]

Thank you. I have read a bit about the bowel surgery and even though it really scares me, I just need to go with the flow.

[Seasun36-uk]

Hi there Pendle 99,

Like Marian, I was in exactly your position, it was last June. For me the most shocking thing was waking up with an epidural, which I had for 4 days! I am an ex-midwife too! I was ok with having it for the surgery, but struggled afterwards! However.....it WAS the best thing. I had a ripple mattress (strange) which 'moved' me about & very good nursing care 🙂. The nurses were superb & I received all meds promptly. Take in: your mobile, a little clock for the bed table, nice soap, nice nighties, hand & face cream, lip salve, tissues, gentle wipes & a head covering (little soft hat). I wore mine to theatre! After a few days, I was moved to be near the window - it was marvellous & it really cheered me up! (Also my epidural was out!! 😂 and I wasn't taking Tramadol, which made me see little furry animals under the next bed!! 😂). The best pain relief for me was Oxycodone (synthetic morphine) & intravenous Paracetamol (fab). Everyone is different with what suits them, so if one thing doesn't suit you, ask the nurses. However busy the nurses seem, they are on your side! I also saw nurses from the Pain Team, the Surgeoens, Physiotherapists; all so helpful. Try to walk as soon as you can & do deep breaths. Drink sips of water, as much as you can. I only had my husband & step-daughter to visit & was glad. I asked for visits from the Chaplaincy & they came 4 times in the 8 days that I was in. Don't forget your GP. Mine was such a help! For bowels (!), I found Docusate Sodium (capsules) the best. You can take 4 or 5 a day! Very gentle. Have lots of drinks too. I had a nutritious drink (Fortijuice) on prescription too, one a day. The Surgeon came & explained everything after 2 or 3 days. Before that I wasn't concentrating too well! He said he & the other Surgeon had removed every trace of visible disease! It was so wonderful to hear that; I hope the same will be true for you Pendle 🙂. I wonder if you live near the Pendle hills in Lancs? I am in the SW. Thinking of you. Don't be afraid. You will be in very good, safe hands.

Linda xx 🌺

[Pendle99 in reply to Seasun36-uk]

Thank you so much for your reply. I live in th SW too xxx

[kristinaapril]

Hello, though sorry to meet under these circumstances.

Your surgeon should hopefully explain things thoroughly when you meet with him/her. My moms' surgeon used all the medical lingo, so we asked him to explain all the procedures in "lay mans terms" to us. My mom opted for a radical/exploratory surgery (rather than conservative), which allowed the surgeon to remove anything suspicious. For my mom (pathology stage 3B, though had neo-adjuvant chemotherapy as well) this included: Ovaries, Uterus, Fallopian tubes, Appendix, Omentum, Spleen (atypical, cancer on the surface), and Pancreatic Tail (also atypical, benign cyst). Mom did have a hard time recovering, though her disease spread was more elaborate than the CT shown. Hospitalized for a week, then a four month recovery.

Along with what everyone else said, my mom really enjoyed having her own front-zip house gown along with her own slip-on slippers. She had her surgery in the summer months, so her room was rather warm. Both of these left her able to cool down easier than the traditional hospital gowns and the slipper socks.

As for home care, my mom used a toilet safety frame (not sure if this is the correct term), along with a shower chair. This allowed her to be more independent, which is what she wanted.

A lot of people suffer with constipation during the chemo regime and surgery. Do you take anything to aid with bowel movements? My mom took Miralax (Polyethylene glycol 3350) daily, and since treatment completed, every other day.

Also, after surgery, you need a daily shot (Mom had Lovenox, to prevent blood clots) that continues for 28 days. These shots are rather difficult to do yourself, so if you do not have a home-care nurse, you may need to ask someone to give you it. It's not hard (I did it for my mom), though it was something we were unaware of until post-surgery.

Wishing you all the best,

Kris x.

[January-2016-UK in reply to kristinaapril]

This is a really good point about the injections. Watch the nurse closely and ask her to explain to you how best to do it. It came as a surprise to me that I had to do them at home and I wished I’d paid attention.

[koffeekat99]

Hi. Some great advice already.

I bought some new cotton nighties with no adornments on them so they were comfy around my abdomen. Take headphones, puzzle book, something to read, whatever you may need to occupy your mind. Depending how long you are in hospital have someone who could bring you some food in such as fruit, soups or sandwiches. The hospital food was atrocious, but admittedly may be better in different areas. Think about what you will wear when leaving hospital, i.e. it may need to be a dress or something without a waistband.

I was in hospital for 3 nights so was lucky that I didn't have to spend too long there.

Constipation: you should find that for a few days after surgery you'll be constipated. It takes a few days for your bowels to wake up again for anyone. After a few days you should start passing wind and that means they have woken up. So initially expect to be constipated. The staff will advise you at what point you would be expecting to open your bowels.

Surgery being described as 'removing anything that looks dodgy' probably does sum it up. They have to talk you through all of the risks so you are aware of them as a possibility. I would say just ask them whatever it is that is worrying you most because they'll probably have an answer for it. Any question should be taken seriously and responded to as the team will recognise that it's best to help to allay any anxieties as much as possible. So if something is really bothering you then ask the question.

[January-2016-UK]

PS. Whoever comes to collect you, have them bring a cushion to place under the seat belt. You’ll need a cushion in cars for a good few weeks too.

[Hidden]

Hi I was in your position April 2017, I had 4 chemos then a debulking operation and then 3 more chemos my surgeon went through everything as part of the authorisation process & I warn you your head will spin with all the things they may have to do, I dealt with it by just thinking that they are the experts and they will do everything they have to to get rid of the cancer, before my op my CA125 was 2000 after it was 64, as far as I’m concerned surgery saved my life.

I am now currently cancer free but being monitored in a 3 monthly basis.

I found being in hospital quite overwhelming everyone was lovely & friends were so kind but I felt bombarded with gifts especially food & drink and in the end I had to ask people not to bring me in anything it sounds ungrateful and perhaps it was but at the time I couldn’t lift anything and I was surrounded by stuff that had been brought in that I didn’t wasn’t to eat or drink I think I wasn’t mentally prepared for it all.

I took pyjamas rather than nighties and my one saving item was an extra long charger cable for my phone, this enabled me to lie in bed with the phone plugged in as getting in and out to put plug in was a nightmare.

Anyway I wish you all the best take each day as it comes and try to remain upbeat it will help.

Please let us know how you are xx

[Sunfleury-UK]

Do have a look at Target Ovarian Cancer's guide, 'What Next?' if you havent already. You can download it or request a free paper copy.

You'll find previous threads here with 'tips for surgery' by searching in the box at the top.

My top tips would be a loose long cotton nightie & dressing gown, lavendar bag (start sleeping with it at home and then take with you), your own pillow and cotton case, some music/ radio and headphones, mints / mint tea to help afterwards.

Do write down questions for your surgeon and take them with you. You can ask to record the appointment on your phone / ipad and slme consultants and hospitals are happy with this.

I set up a 'phone tree' so my partner didnt have to field questions and give updates to too many people.

Distraction is good before the op, so plan some nice treats, gettogethers or cook and fill the freezer (i ended up painting the kitchen which whilst a bit extreme was definitely a big distraction- perhaps too big & not something im recommending !!!!!)

You should be given a recovery program and guidance as to what to do and not do after the op... do take this seriously.

Wishing you hope & strength Sxx

O and im another one who managed to negotiate my way to the bed by the window (which i could open)... it made a big difference to my recovery as i ended up in for a couple of weeks due to complications.

[Cropcrop]

Hi lovely, welcome to our lovely gang, you’re in such good company, we all know where you’re at because we've all been there and got the tee shirts so ask us whatever you want somebody here will have the answer for you.

The ladies have pretty much covered this but I would just like to add you’ll need nighties not pyjamas as you’ll more than likely have a vertical scar, far more comfy for you, take your own slippers walking is a little tricky at first so your own slippers are important, you’ll need cushions for your journey home from hospital, one to sit on and one to hold over your tummy to protect it from the seatbelt, it would be nice to have lots of pillows when you get home, sleeping is much easier slightly sat up at first, they’ll give you pain meds and drugs to try to head off constipation, it may be worth mentioning to your surgeon that you currently have issues there, it’s important to keep really well hydrated.

It’s really important to have somebody to look after you when you get home if possible , you won’t be able to do very much for yourself at all at first. I watched lots of TV at first, nice boxed sets and I learned to love the Big Bang theory and still do three and a half years on. It’s important you do very very gentle exercise, starting with a few steps and slowly increasing to short walks, your energy levels will slowly return, be guided by your body.

Ask your surgeon and the nursing team as many questions as you want, it’s better to have all the information you need and they’re only too pleased to answer and to help you in any way they can. My surgeon drew pictures for me while he explained the extent of the surgery he was really superb and I had a nurse and Macmillan nurse there too who went through all the other details of what to expect both pre and post op.

I also had heparin blood thinning injections which I was able to do myself, it’s not so bad and it wasn’t forever but potentially life saving.

Most important is that whilst it is a big surgery it’s really worth it in the long run and it’s surprising how you will soon start to feel better, one day at a time. I did it, I’d never had surgery before so it was really in at the deep end, we’ve all done it and I promise you can do it too lovely.

Let us know how you get on and ask us anything you want to ask, no question is too small or big. Take lots of care ❤️Xx Jane

[Irisisme]

Hi Pendle99,

It looks like everything's been covered so I'll just endorse what's already been said and wish you good luck.

Oh, yes, before you go in you could try practicing some yoga meditation - it helped me deal with the nerves.

Iris xx

[Perthgirl]

Hello Pendle, After all the great advice above I will only add my best wishes for your op and know that there is always someone who will listen, help, advise but mostly support you on here. Take it easy after your op and take things slow until you start feeling stronger. Stay strong and the very best x x

[Pendle99]

I cannot believe the number of responses I have received. Thank you so much everyone. I hopefully see the surgeon this afternoon and thanks to all you lovely people I feel more prepared as to what to ask. I also have a list going for what to pack in my hospital bag! A huge thank you for helping me not feel so alone on this journey xxxx I will keep you posted xxx

[Lindaura]

I am just going to add, that everyone's surgery is different, but the main thing to understand is that your surgeon is going to look at every organ in your abdomen, which means touching everything, from bowels to kidneys, removing and cauterising all cancer he finds.

This will be a shock to your system, so do not he in a hurry to leave the hospital.

Because my digestion was frozen afterwards, I was unable to eat for 8 days. Don't rush this. It will pass. I am eating for England now!

Oh, the pain management is so much better now. So that is something you don't have to worry too much about.

Good luck!

Laura

[Welshandproud]

Hi Pendle I think that everything has been said by the other ladies on the site but just to say that your hospital stay will be over before you know it. I had my op on the Thursday and came home on the Monday. As to what to take with you - things to spoil yourself: a good moisturiser, perfumed soap, lip balm, some fluffy towels, a couple of new nighties, comfy slippers and I loved my packet of salted caramel chocolates from Hotel Chocolat. They made me feel indulged despite being debulked!!! Wishing you all the very best xxxx

[Di16]

I took nighties rather than pyjamas, so I wouldn't have anything tight round my waist. Di