Now have my plan but I'm so scared!

Hi lovely ladies saw the surgeon yesterday and went through what may need to happen and was told I may end up with a stoma and then will need carbo and taxol about 8 weeks after surgery. Date for surgery is 20th July, which I was so disappointed at as I'm really uncomfortable with ascites that seems to have come on quite quickly! I'm not sleeping and even trying to eat enough is a struggle.

I can't get negative thoughts out of my head that things seem to be deteriorating and I still have almost 2 weeks to wait until any treatment begins! I'm trying to stay positive for my family but inside I'm terrified and feel so unwell now I'm scared!

Not sure if I should ring the nurse on Monday and speak to her about how I'm feeling.

Any tips on how to try and get more comfortable before my surgery? They did say if it got really bad they could drain some fluid off but that doesn't sound good either! Have any of you lovelies had experience of this?

Thank you

Bev x

40 Replies

  • Hi Bev first of all get rid of those negative thoughts! I was diagnosed in 2012 with stage 4 disease and am still fighting! It wouldn't do any harm to give your nurse a ring she could maybe arrange for you to have the ascites drained which will make you feel much more comfortable, its not as bad as you'd think. I had bucket loads drained off before my op and was told I would probably need a colostomy but didn't have to. Good luck with your op Love Sheila xx

  • I don't ever find get rid of thoughts helpful, sorry.

  • Thank you Sheila I will ring the nurse as this ascites is getting so debilitating it means I'm not physically able to do much so have lots of time lounging around thinking! I have always been a really active person so not being able to do much at the moment is another frustration

    You ladies are all an inspiration and a source of great support thank you

  • I would certainly re question having the asities drained. You need to be as fit as possible for op. It's a relatively simple procedure with almost no pain if you get a good practitioner! Out of 4 I only had one awful one.

    I was a wreck before surgery mentally and I'm not sure there's anything that helps, I just kept reminding myself that negative thoughts were only that, thoughts. So I felt it was time wasted.

    You can go via A&E if you get desperate with ascities. But try CNS 1st tomorrow xx

    My consultant wouldn't go ahead while I had ascities. Never asked why as was all new to me at the time xx

  • Hi Bev, It's hard not Io be scared it's normal but once you start treatment and realize that you will have the strength to fight like many ladies on this site. Do not put up with the discomfit ring your nurse to morrow, on your journey make sure that you do ask for help from your team that is why they are there to help you through and you can away come to this site for advice and ENCOURAGEMENT, ( any advice given talk it over with your team)

    Keep in touch and best wishes for the op..Lorraine 💙💙

  • I worry about phoning too often but though everyone's tried to reassure me that it's ok the one that convinced me was 'hmph, well we don't want you brought in on a stretcher, keep phoning'. Sometimes advice over the phone is enough and don't forget MacMillan and Ovacome phone lines.

  • Thank you Lorraine that's really helped. I am definitely going to ring the nurse , have been thinking I don't want to seem a bother but you're right they are here to support me and I need to feel more comfortable x

  • Hi Bev,

    Just to say I was going through exactly the same as you are are this time last year .... I was admitted to hospital though through having a bowel blockage, later to discover Ovarian cancer stage 3c!... I did have to have a stoma, which is due to be reversed, so I do know how you must be feeling .. Remember though that the docs will always give you the worst case scenario!... I'm guessing you are not aware of stage etc at this present time Bev?.. it is a weird world that we are thrown into , however you will be well looked after and personally speaking do believe that our teams really seem to care about us ... most definitely speak to your nurse tomorrow Bev, it will be a relief to air your concerns and I'm sure she will arrange for you to feel more comfortable..

    Please be assured that there are tons of treatments and it really isn't all doom and gloom.. I'm now NED and hoping to remain that way for many years! There is life with Cancer Bev, albeit a slightly changed one!

    Keep in touch Bev, and lots of love ❤️

    Jackie xx

  • What a lovely reply. My life is much changed but still fun. I've made new friends, walked 100 miles of the Pennine way, have a new grandson. I don't think 'count your blessings' is helpful but looking forward to what you want to do afterwards and arranging treats and visits. You can get nutritional drinks. My ma in law had some for a different cancer. Cos you might be missing out on stuff leading up to the op.

  • Thank you I got some multivitamins with iron and some complan from the supermarket yesterday as that's another worry that not being able to eat enough is going to put me in a bad place nutritionally before the op and chemo! I want to be as strong as I can to fight this beast xx

  • If you ask your GP you can get Fortijuice on prescription - it is full of the nutrients you need. Tastes awful, but kept me afloat while I had ascites and couldn't eat.

  • Thank you Jackie x No I won't know stage etc until after my op, the stoma nurse will be contacting me this week too. It's all happened so quickly I can't believe how bad I feel in a few weeks! I was decorating my dining room at the end of April!

    So glad your NED and your stoma is being reversed!

    You ladies really are helping me and are all so positive xx

  • beewild Bev, if you weren't scared I'd wonder what's wrong with you! Get the ascites drained. It will give you immediate relief. It does not hurt and you will be able to sleep and eat again. I had paracentesis twice before surgery. I also had a stoma for 7 months. I am fine now. You can do this!!!! I'm NED 11 months thanks to surgery and 34 weeks of chemo. Read my profile for more info.😊

  • That's really helpful Tesla I've been sat here thinking the draining might delay surgery etc and I don't want that!

    Definitely feel I need it done though as think the effects of the ascites are getting me down more than anything!

    So pleased you're doing so well xx 💖

  • Worth checking that out but you do need to talk to your team.

  • Hi Bev

    Try to stay positive Bev you will get through this with the help of your team , family and friends .

    I know how scared you must be and how the waiting is awful and drags on . You are still in shock and just want treatment to start especially when you are so uncomfortable with ascities.

    I was diagnosed a year ago due to ascities that came from nowhere when on holiday in Mauritius. I could hardly walk or eat and it was so uncomfortable lying down .

    The emergency laparoscopy ( which found the cancer stage 4 what a shock !) drained the ascities initially but they came back once I was back in the uk and waiting for my treatment to start . I needed chemo first to shrink tumours . I remember turning up to my chemo show round and the nurse saying , 'you need a drain , you are in so much discomfort'

    Would definitely contact your CNS nurse or team and get assessed for a drain . I had an ultra sound assisted drain. Was such a relief , they drained 5 litres . Having the local anesetic is alittle uncomfortable but the rest is no problem . Involved a 24 hour stay in hospital and I suppose it will depend on if they can find a slot quickly and they think it is bad enough to do the procedure 11 days prior to surgery . But make sure you let them know how bad it is !

    The good news is your cancer appears contained and they can do the surgery first . They have to explain the worst case senario incase they find something else needed during surgery . I was also told I might need a stoma but didnt .

    I am a year on since surgery and 6 months post chemo ( no evidence of disease ) and although the journey has not been easy at times I am here enjoying life , walking the dog and laughing with friends and family .

    You can do this, your team are there to support you so do give them a ring on Monday and try to do something you enjoy today . Love and best wishes Kim x

  • Wow Kim that must of been so frightening and being so far from home!

    I'm definitely ringing my CNS on Monday I look about 7 months pregnant now and it is so uncomfortable and making me feel miserable!

    I can't wait to get a bit of my life back too seems this disease is taking over it completely at the moment! So glad you're doing so well now and thank you for your support xx

  • Morning Bev, I really feel for you as I remember those feeling of fear all too well. I only had a ten day wait for surgery once I saw my Consultant and they were a long ten days. I was lucky in that I didn't much ascites so I was able to keep pretty mobile so I kept myself as busy as possible (my boys were 9 and 14 at the time) and as my in laws were on stand by to help with them I cleaned the house from top to toe and every wardrobe and drawer had a good sort out and I wrote endless lists for hubby and the in-laws. Keeping busy helped, although it didn't stop the nightmares. I had a few of those which is something I had never had before and this was upsetting for hubby as all the cuddles in the world couldn't stop them. The day of my op couldn't come quickly enough for me as I just wanted this thing out of me. I would ring your Nurse tomorrow and see about having the ascites drained while you wait for your op. A build up of ascites can make you feel very uncomfortable and unwell and once its drained I am sure you will feel much more comfortable. Massive hugs, Kerry xx

  • Thank you Kerry I'm definitely going to try and get this fluid drained I'm sure things will seem better once I feel more comfortable and can do some normal things again x

    The waiting seems intolerable, when they told me on Friday surgery was the 20th I actually gasped and said that's ages away! The consultant looked shocked and said it's less than 2 weeks but the CNS understood and said every day must seem like a week for me at the moment and she's not wrong x

    Hugs to you too Kerry and thanks xx

  • Hi Bev...I went through the same process as you in 2015. It might help to know why they are reluctant to drain or do anything until's because they could inadvertently spread cancer cells in the process.

    It's a small but real if you can hang on until 20th that would be good but if you can't then say so. I coped with it by eating little and often..trying to avoid constipation and using pillows to support my enormous tummy in bed. I couldn't do much but we went for several boat trips that summer which I remember fondly..despite ascites. Hope you find a solution that works for you xxL

  • Thank you Lyndy that's helpful and yes I'm trying to eat small amounts regularly! I will speak to my CNS tomorrow and if that's a risk then I will try and hang on

    lol I've discovered the pillow trick and it helps a little in bed! And I'm obsessed with not getting constipated too as I'm taking co codamol for a bit of pain relief! I've found baked beans and licqorice have helped in that department!

    Glad you got through it and hope all is well for you now! I've been asked to take part in research trials to find ways of detecting this disease earlier and boy do I want that to happen for others in the future!

    Thank you for your reply it's very helpful as I was sat here thinking why would they leave me uncomfortable and maybe I was a lost cause! Our minds are our worst enemy sometimes xx

  • Hi Bev

    If your hospital are offering to drain your ascites before your surgery I'd recommend getting it done as you will feel so much more comfortable and you'll go into your surgery feeling more positive and healthier as you'll be able to eat, sleep and function a bit more normally. I had 5 litres drained just before Christmas, mine accumulated very quickly too, from a small puddle to 5l in two weeks. There is a slight discomfort when the tube goes in but the relief was definitely worth it.

    From your earlier posts it sounds like your team think the cancer is confined to the ovary and I think it's a good sign that they are going to operate first as they sometimes offer chemo first to shrink the disease. For the surgery they do go through everything that might happen as they have to get permission for all possibilities so that they can do everything they need to in one operation. Regarding the stoma, one lady on this forum said to me before my surgery that "you will think you can't cope with it but you will". I didn't need one in the end but my understanding is that you will get help to deal with it from your hospital and I'm sure there are lots of ladies here who will help if you did need one (but you might not).

    I think it's definitely worth speaking to your nurse tomorrow about the fluid and also for some help with how you are feeling as the waiting is difficult.

    Good luck and keep us posted.

    Andrea xx

  • Hi Andrea thank you for your reply, was told that it looks from my CT like there is some disease in my omentum and a couple of lymph nodes look enlarged too but they will assess these at surgery.

    They did at one point query chemo first but the specialist radiologist reviewed my scans and they've decided surgery first which seems a bit better to me albeit none of it is good!

    I will contact my CNS tomorrow and have a good chat with her about draining the fluid, the risks etc and how I'm feeling too! And yes a few weeks ago I was still in my own clothes and working now I'm not in work and have had to borrow clothes 4 sizes bigger which still aren't comfortable! It's scared me how quick this has developed!

    Hope you're doing ok now and thank you xx

  • Hi Bev

    You're right, it is scary how quickly this comes on. My diagnosis was a complete shock to me as I had barely any symptoms (the ascites came after diagnosis). I was diagnosed as Stage 3C high grade serous but restaged to 3b after my surgery following 3 rounds of chemo.

    I finished treatment in June and have no evidence of disease. I honestly never thought I would get through treatment but when I finished it felt like it had all gone so quickly. You will get through this but now is the toughest time waiting for everything to start xx

  • Dear Song63 Yes I had very few symptoms just a bit of lower abdominal discomfort which I put down to perhaps pulling myself whilst scaling ladders and stripping wallpaper! Went to my Gp mid may as it didn't subside and whamo here I am! All the ascites didn't start til about 3 weeks ago and has developed quickly!

    I'm so pleased you are in a better place now and you're right waiting for everything to start has been hell but every day I'm a day nearer starting to fight this monster inside me xx

    Thank you

  • Before I had surgery in February, I was told I would probably need a stoma, & was seen by a stoma nurse to discuss. All the ladies in the bay I was in apparently had stomas already, but I came round from surgery to find I hadn't needed one after all. They always tell you the worst case scenario. They also told me I may need to have my spleen removed, but that didn't happen either. Please do ask for advice about your ascites. Di

  • Thank you Di I will speak to them tomorrow xx Hope you're doing well since you're op xx

  • Hi, of course you're scared, you're allowed to be scared. I was told before surgery that the chances of me having a stoma were really high because my cancerous cyst was adhered to my bowel. I had my surgery and voila no stoma. They tell you worst case so you're prepared. If you feel you need your ascites draining get it done, there's no need to be uncomfortable. Good luck we're all here to support you as much as we possibly can. Take care ❤️Xx Jane

  • Thank you Jane xx you are all such lovely supportive ladies and it's great knowing you've all been here and I'm not on my own

    Sometimes I find it hard chatting to family about how I'm really feeling for fear of getting them in a panic x

    Your advise and experiences are really appreciated x

    Thank you

  • don't hesitate...have your fluid off! love Chris xxi

  • Hi Bev, your feelings of fear are completely understandable, you're uncomfortable with the ascites, worried about surgery and the thought of having a stoma. I had surgery first and my ascites went at that point. The ladies have given you some good advice about contacting your nurse. I would say we are all told we might need a stoma and are marked for it on admission before surgery. I didn't need one and hopefully you won't either. All the best. Ann x

  • Thanks Ann you're all reassuring and are helping me enormously xx

  • We're all in this together x

  • I waited 8 weeks for my op and became very sick and weak during this time. I had ascites but not enough to be drained. I phoned my CNS and she referred me to the local palliative care nurse who tried to help my sickness by changing my anti-sickness meds. It didn't work for me but is worth a try. I was told that I was not likely to get a stoma but woke up with one. I have read several posts by ladies who were told they might get one but didn't. I am hoping to get mine reversed now. I was too sick to be frightened about the op-I just wanted them to get on with it. I had a huge op and had complications but was up and about after about a week and slowly started eating again. Wishing you the very best of luck.

  • Hi Neona 57 sounds like you had a dreadful time. I'm not being sick thank goodness just finding it hard to eat properly so I'm just having very small amounts as often as I can and taking complan and multivitamins

    I'm counting off the days til my op too and although I'm scared about everything I'm looking forward to starting treatment so I can try and get back to some normal activities

    Hope you're doing ok now and thank you for sharing your experience x

  • I have been recently diagnosed with PPC stage 3 which is treated the same as ovarian cancer. I had ascites and couldn't eat and felt very poorly. I am currently having chemo to shrink with the hope that surgery will be done in the future. I had 3 litres of fluid drained prior to chemo and it definitely improved things for me.

  • Thanks Eriksendi I'm waiting for my CNS to call me back regarding the ascites so I can have a good chat with her xx

  • Hope you get it sorted - mine definitely helped and I was able to eat and get a bit stronger before the chemo. What a joy it was too to have an appetite back!!

  • I think Dr's have to give us the worst case scenarios. My wait was a month between seeing the surgeon and having the surgery. So I understand your frustration totally. I used some of this time to recruit family and friends on a tentative timeline for possible help after surgery. This took the stress off of actually having to ask for help when it came to it. They were all very happy to help any way they could. If you can get some relief by having the fluid drained so that you can be more comfortable and get some much-needed rest, that sounds like it might be the right thing to do.

  • Hi rppizo I went to be assessed back at the hospital yesterday and they are going to drain some fluid off after an ultrasound scan however I've waited at home all day today for them to call me in but no slot became available so need to do the same tomorrow! My family are getting exasperated and spent most of today trying to calm them down! I'm sure once I feel more comfortable and can eat and sleep things will feel better for all of us x

    Hope you're doing ok xx

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