impending surgery anxiety.

[Belindajw]

Hi all, I was diagnosed in May with stage 4 high grade serous OC. CA125 was 12062. I’ve now had 5 cycles of Carbo Taxol which have been increasingly hard but CA125 now 70 and I’m booked for debulking surgery in three weeks time, then two more cycles starting 4 weeks post op. I’m actually feeling pretty well at the moment so am quite anxious as how debilitated I’ll be post op and how long it’s going to take to get over such big surgery. Defiantly not looking forward to those last two cycles. Please can anyone give me an idea of how quickly they recovered post op? I know everyone is different and we shouldn’t compare too much but I can’t help myself! Thank you.

[Lyndy2]

Hi Belinda I had surgery after 4 chemo and my experience was that I felt really good from the moment I came round! My scar took a while to heal…about 8 weeks to fully close but it didn’t cause any pain, just a bit oozy.

I think it’s true that your muscle tone and strength takes up to a year to come back but that doesn’t mean that you can’t live a pretty normal life.

I really enjoyed the rest from chemo and was ready to get it done when I restarted. So don’t assume it’s all going to be awful, there may be bumps in the road but you may find it’s better than you think xx

[Belindajw in reply to Lyndy2]

Thank you so much Lyndy, that has helped me feel more positive, it’s sometimes hard not just to anticipate the bad bits! Thank you

[0462County]

Hello Belindajw

Wow, what an amazing drop in your CA125. I am different to you, I had my debaulking surgery first on 20 June then started chemo 8 August.

The day after your operation the nursing staff will get you out of bed and physios will come round to see you and show you exercises.

Take in loose fitting clothing/nighties. My stitches were not covered. I found out weeks after my operation you can buy hysterectomy knickers. I made a big mistake. When I put my own knickers on for the first time after my operation, without thinking I let go of the elastic at the top of my knickers which twanged against my stitches. I was in agony 🤦 I was crying with laughter and pain.

You have been so strong with your chemo, you will I am sure be strong after your operation. Like with chemo take each day at a time to recover after your operation. I didn't think I had recovered much from my operation. However, when I looked back each week after my operation I realised how much I had achieved to do each week.

Love and hugs.

Beth x

[Belindajw in reply to 0462County]

Thanks Beth, it is easy to feel it’s just you going through this, but this forum and people like you who take the time to help and reply are amazing. Thank you. X

[Hidden]

Hi Belindajw, I’m same diagnosis as you, had 3 chemo and op is planned for next 2-3 weeks, not got date yet. I’ll have 3 chemo post surgery. It’s good to see the comments from the other ladies.

Where are you being treated, I’m at the Christie.

Good luck and keep positive xx

[Belindajw in reply to Hidden]

Thanks, I hope all goes well for you too. Yes nice to see replies from others. I’m down in Dorset. I’ll be thinking of you xxx

[Morini]

I had 6 chemo then my op in Jan 2022. Recovery was no where near as bad as I thought it would be. I made sure as took it easy and started some very gentle short walks daily and built them up.

The last 2 chemo was relatively easy (although I felt more exausted) because once I had one, I was just thinking I only had to go through it one more time!

I'm on Avastin now, and that causes some aches and pains BUT I am back to part time work, riding my horse, out with family and friends and living my best life every day I can.

Best wishes for your op and the last chemos, remember how far you've come and all that you've achieved, you've got this nailed!xx

[Belindajw in reply to Morini]

Thank you SO much it’s really encouraging to hear how well people are doing thank you for taking the time to reply, that’s really helped x

[TMiPP]

Hi BelindaI am so sorry that you have joined our exclusive club! I was diagnosed with stage 4 b in May 21.

I had 3 cycles before the operation. This lasted 10 hours and they took everything I didn’t need and finished at 11pm. The next morning they got me to try to get up! Believe it or not you can get up and after that they encourage you to sit up and move around as much as possible. It took me 4 days to be released from intensive care ( at which point I could not walk unaide).A day later and I could get to the loo without help. Discharged after 10 days when I was able to start doing my steps ( I try to walk to see how strong I feel and gauge for myself) and I could do 500 on first day. It took a few weeks before I was confident to go alone but here I am 18 months later!

They gave me excercises to do pre-op and I think they helped lots - especially the breathing excercises.

Wishing you good luck - let us all know how you get on

Terri x

[Katmal-UK]

Hi. I remember thinking ‘I can’t do this’ but I did and it was nowhere as bad as I imagined, some discomfort, can’t say pain. I always refer to it as fear of the unknown. Listen to your body and be kind to yourself. If you have ppl around to do things for you let them, be ‘selfish’ and rest. Follow the advice, don’t lift anything heavy and that goes for things like a kettle. I was back driving after 6 weeks, getting round fine. I had my op followed by chemo which as you have already discovered is cumulative in side effects. As you are having a break for the op the last two hopefully won’t be as bad. Piece of advice, when your on your way home (I had op on Thursday and went home on Monday) , take a pillow to put across your tummy in the car to cushion against the seatbelt. Good luck and do let us know how you get on xx

[Fluffyjumper]

Hi Belindajw

It’s normal to feel anxiety before surgery. I had my surgery in December and was terrified. Everyone is different but I felt a lot better after surgery. I didn’t need ICU and was out to bed the day after surgery and home 4 days later. As others have said nighties and big knickers are recommended. I took a pull over the head spirts bra, loose T shirt and roll top harem pants to wear in hospital. Once home I was taking short walks around the garden then 5 minute walks to the end of the road within a week. I could breath better and had less abdominal discomfort than before surgery - I felt more myself after surgery and relieved I’d got it over with.

[Jayniiee]

Hi Belinda, that's a fantastic response to chemo.. you've got this 😊 i had five chemos of carbo/taxol before my surgery in jan and then three more chemos starting four weeks after the op, finished all treatment in April. I was back in gym this summer doing a class most days, lifting weights and swimming. I could have probably gone back to the gym before then but I was a tad lazy.. 😉 I was up and walking around and getting a shower a couple of days after.. And was home by day 4. I did sleep a lot after the surgery needing a sleep in the day probably for a few weeks after but you do get stronger every day. Just think with each sleep all the healing that is going on. Try not to worry about things (that bit is easier said than done, i know) but each time you find yourself doing that try staying in the moment and visualising being stronger and you will get there and it will be a lot sooner than you think. 😊

[Trickysite]

Hi, my biggest issue post 10 hour operation was exhaustion. I could not lift a finger to get dressed or make a meal for 6 weeks. I was 75 years. Maybe that explains it. That was last October. Now I am leading normal life but like early nights. No pain after op and hospital great. 5 days in intensive care where I was the fittest and 5 days in general ward. Off to Poland for little holiday in 2 weeks. Good luck. You will find it far easier than you think!

[SopSinger]

I was stage Ic and in previous good health. By about 4 weeks after surgery, I was well enough to go out for lunch (with someone else driving) as long as I had a rest afterwards. You're on a fairly standard protocol and the statistics show that most women have recovered enough that they will cope with the additional chemo with no problems. The hospital staff do this all the time and know what they're doing. Of course, no one can guarantee that there won't be complications, but they are doing their best for you, so try not to worry. Sending hugs!

[Newbery3]

I'm about to get my op on Wednesday too and was worrying about tge same things, these answers are really encouraging 😊 I think I get more support and straight answers on this site than anywhere else!! Good luck for your operation 😘 I'm just going to look for tge hysterectomy knickers and exercises lol xxx

[NewtonEmma1900 in reply to Newbery3]

Hello again, I just commented on knickers, depending on where your scar is might affect your choice because if it is vertical big knickers may cut across anyway. I tucked my soft cotton cami into my pants and that way the clips/possibly stitches are protected. Very cosy too. I also wore lose track suit bottoms to begin with - this time of year you will probable be ok with a skirt or dress and no tights. Suggest you ditch the jeans for a few weeks. K

[Newbery3 in reply to NewtonEmma1900]

Brilliant ❤️ yes vertical I've been told so I thought I'd go commando 🙈🤣 but yes I've found some on amazon and I got dungarees x

[Belindajw in reply to Newbery3]

All the very best for your op next week, I’ll be thinking if you, I’ve invested in big knickers and dungerees😂! Xx

[NewtonEmma1900]

Like many others have replied I had surgery last March following 4 taxol and followed by 2 taxol. 1st time out of bed Is difficult but once you get used to how to move your body you will be fine ( I am 70). Keep moving, do the exercises but pace yourself. Regarding pant/knickers despite having big pants I wore my my own bikini pants as it will depend on your wound. If it is horizontal you may want big pants but if it’s vertical and goes above you waist whatever pants you wear will cut across the wound . My solution was to wear a cami and tuck into the pants and I had no issues. The cami was soft and comfortable. I used bio oil on my scar too once it had closed properly. Suggest you ditch the jeans for a few weeks. Good Luck. Katy

[Willowsmum51]

Hi Belinda, I have the same cancer as you. I was diagnosed in September 21 and had 3 carbo (allergic to the taxol) and then a radical hysterectomy and debulking surgery. Followed by another 3 Carbo.

It’s a major surgery so yes you will be a bit sore after, I would say I took about 6 weeks to recover and fully recover after about 3 months.

What I can say though is 1, wear a nightie in hospital, I took pjs and it wasn’t great. Take lots of comfortable granny pants, wear something loose to go home in, use a cushion to hold against your scar when coughing or sneezing! And be kind to yourself, take it easy,take little walks around the house until you feel steady enough to walk outside.

You got this! Wishing you the very best of luck xx

[OrdinarySoul]

Hello, I had my op in mid-July and am about to start chemo so I’m feeling nervous about that bit. Surgery went okay for me though - I was up and about the same day, the nurses laughed at me shuffling up and down the corridors but I wanted to get home to my kids. I probably did a bit too much too soon and was pretty tired for the first 3 weeks, needing a lot of rest and ended up back in the emergency clinic with pains from doing too much. Then I was more sensible after that. Maybe too much info but the one of the worst bits for me was trapped wind and constipation and once that was sorted (I had a suppository and then regular lactulose) things seemed to get more comfortable. I’m just back from a week in Cornwall where I didn’t bodyboard or anything but I was able to go in the sea with the kids and walk around the town. I think following your body is the best advice. I’m back to driving this week and returning to work next week. Wishing you a smooth op and recovery xx

[Belindajw]

Please can I thank all of you wonderful ladies who have replied to me, I’m overwhelmed by your support, practical advice and encouragement. You have all made a difference and allowed me to have a better expectations for the op than I had and a bit of hope the future. Thank you all. I hope I can give the same to others in the future as you have for me. Xxx

[Summergold2 in reply to Belindajw]

Belinda this website is a godsend for all of us and our loved ones! Everyone is so supportive here.......including the ovacome team! Please post how you are doing I think of all the support the ladies have given me! Hugs Debbie

[Differentforgirls]

Hi Belinda. Bless your heart. Understandable you’re feeling anxious - pretty normal before such an op. I have had 2 debulking surgeries ( Feb 2018 then Jan 2020).

Before my first op they didn’t prepare me as well as they should’ve ( they didn’t empty my bowel beforehand which caused a few difficulties I won’t go into ) & I was in hospital for 9 nights after surgery. Obviously I thought they knew best & put my trust in them.

So, when I knew I needed a second surgery, I felt pretty anxious. I talked through my first experience with my surgeon ( different one for 2nd surgery - the most fabulous Prof Christina fotopoulou) & she put me at ease & told me that she would make sure I didn’t have the same experience as the first time. She prepared my bowel well & it was a totally different experience. I was up walking the next day & home after 4 nights.

Also, only have the morphine if you really need it ( I didn’t need it after 2nd op which helped me ). IV paracetamol is so much more powerful than the pills for pain relief.

You’ll get through this - just think, any cancer they see with the naked eye will be gone. That’s a good feeling.

Obviously we are all different but, as an individual with 2 very different experiences of debulking surgery, I thought I’d share the differences to hopefully help you.

After surgery I lived in leggings & baggy tops/ shirts for a while. Please avoid lifting anything heavier than a cup of tea for a while after surgery ( helps prevent a post surgery hernia occurring ).

You’ve got this!

Sending love & best wishes Lynne xx

[Belindajw in reply to Differentforgirls]

Thank you so much, interesting to have had two different experiences, I have faith in my team and feel they are preparing me as well as they can but insight from someone like you who has actually lived the experience is invaluable. Thank you x

[Driebergen]

Hi! I had my surgery 2 weeks ago and I feel fine! I am walking, driving and have to remind myself to not lift heavy things. I also felt so happy that surgery takes all the cancer out. The surgery was such a positive!!! As mentioned by one of the ladies, the biggest ache for me was constipation. Drink lots of fluids and take the stool softeners🤪I highly recommend wearing a binder. It feels really good to have everything tucked in!

You got this! Wishing you a speedy recovery!

[Saintgermain]

Had my surgery April 2021 followed by 6 chemo's for me the anticipation was worse than the procedure my incision was about 7" closed with staples a bit painful the evening after but had them call the surgeon to up the pain meds worked like a charm. The next morning I rolled myself out of bed walked the hall and took a shower you have to urinate in order for them to discharge you so movement is key almost had to go home with a catheter but low and behold I was able to leave after 4 days without one once home was walking up and down stairs no problem I agree with Driebergen I also highly recommend a binder worked like a charm with the pain I got mine off Amazon. I wish the same experience for you!

[Alice77]

Hi. I hope all goes well with your op. I was diagnosed with stage 3C Primary peritoneal cancer in Spring 2001. I had six cycles of Carboplatin and Paclitaxell chemo on maximum dose and this was very effective. My surgery was delayed because of the Covid epidemic and a shortage of critical care beds but last October I had radical cytoreduction surgery...the nine hour stuff with a vertical incision breast to pubis. I was feeling pretty well the following day and managed a video call with the family who were astonished to see me sitting up in a chair albeit with numerous tubes attached and in a critical care room with one to one nursing. I had been very worried before the op and less than convinced that I would come through as I am in my seventies but actually the whole experience wasn't too bad with my pain following removal of the epidural well managed . I was lucky that there were no complications and went home after nine days on a reducing dose of painkillers which I replaced with paracetamol and then nothing. The 73 staples were removed in two stages by the nurse at my GP practice and the wound has healed well. I thought at the time that the two adjuvant chemo sessions came too soon but there were fewer side effects than previously. I was near enough back to normal precancer health by March. Please keep positive as the op is nowhere near as bad ad it sounds based on my experience.

[Belindajw in reply to Alice77]

Thank you so much Alice, that is so reassuring to hear. I’m really grateful to you. Xx

[Summergold2]

Hi Belinda I had a 6 1/2 hour surgery and was able to recover in about 4 weeks. It is very scYou ary at first especially here in the US my surgeon used glue to stick me together wild and crazy as that sounds no oozing and no worries of infection. I could take a shower after 3 days! Amazing! You can do this and live a normal life after........just be good to yourself and let others help you. Catch up on reading, favorite movies, and of course favorite foods. Hydrate hydrate hydrate! Water, coconut water and electrolytes too You got this!!!!!Debbie from San Diego CA

[Belindajw in reply to Summergold2]

Thank you so much Debbie I do feel very encouraged xx

[MrsSkippy]

Hi Belindajaw,The team supporting you will be great I’m sure - take their post op advice and you will be fine. It definitely needs a slow and steady approach - don’t try to do too much too soon. Rest when you need to and when you feel ready, take short walks to start with. I struggled with the stairs at home for a while and needed help but in the scheme of things it was not too troublesome.

I saw in a previous post that you are in Dorset - same as me. If you would like, maybe we could meet up one day?

Best of luck with the op. You’ve got this!

[Belindajw]

Thanks Mrs Skippy, I certainly feel more prepared and positive than I did. It was unfortunate that my op was cancelled the day before it was due as the surgeon was unwell (I’d even started the bowel prep!) no one’s fault but it did pull the rug for under me rather. I then had to have a 5th cycle of chemo and a new date in a couple of weeks.If you are in Dorset it would be good to meet up one day. I’m in west Dorset.

Thank you so much for replying to me. Best wishes