struggling after surgery

[Sunsetime]

Hi I had debulking surgery 25th June, good outcome all visible cancer removed which is great news, Post surgery it’s been so tough. Really sick with green yuk , then tube up my nose into stomach to drain off , then CT scan with contrast, vein blow have way through die goes into wrist. I have clots on both lungs and a chest infection. I had a blood transfusion, all the same day. Still have tube in , fluid only for now, I’ve had clots before so knew the risk. I am so exhausted and drained. I’m so pleased with outcome of surgery and less painful than I expected, it’s the recovery I’m really struggling with, hanging on to the positive and confident with the care plan in place just finding it all so hard and needed to share with those who know how horrible this is . Xxxx

[Bettyxxx]

hello Sunsetime

First of all congratulations on all the cancer gone thats amazing now the hard stuff! I am so impressed you even are writing this post as you definitely are having it rougher than me and i have had 2 removal operations xx. I think most people would have crumbled so go you! You are really strong. Its very early days and it sounds like they are dealing with your side effects as they come up. My advice would be try and take each day (or hour if needed ) as it comes, you will get through this and when you do there is no cancer left to worry about. Have you got some distractions? Music was mine so i could just drift off into my own world for a while. Get as much rest between what i suspected are regular but necessary prodding and poking episodes! I found some ‘preening’ helped lipsil, hand cream, doing my hair, anything to make me feel better. Your sound amazingly strong and you can do this one day at a time xxx keep updating us with your little milestones it will help to see your improvements

All the best

Diane

[Sunsetime in reply to Bettyxxx]

Hi , thank you for replying and for your kind words. I did sleep well last night and I’m responding well to antibiotics, I think the transfusion has really helped too. Yes, lots of ongoing procedures, looking like I’m going to need help to get bowel moving. The tube is out of nose now and I seem to be tolerating fluid ok. I have been practicing mindfulness and trying hard to put it into practice. Im hoping the catheter can come out today and hopefully I can have a shower. The wound is held with glue so apparently ok to get wet. I think that would help me feel a lot better. Think I’m turning the corner and on the mend again. Still very tired but that’s expected.

[Bluedoor24]

Hi Sunsetime, glad to hear surgery went well, that's the hard bit out of the way! You need to get plenty of rest and give yourself time to recover, always takes a little longer after any post op complications, but you sound like you're getting there. Hospital food aside! 😪 I also had problems, bleed on lung caused pneumonia and they nicked my bladder, so tube up nose and catheter for almost 3 weeks. Also infection in wound that needed packing daily. That was last September and feeling more normal every day now, just had 2 weeks in Portugal with my granddaughter which was a big boost for me. I found planing nice things to do helped me get through.

Try to keep positive, you will get through this.

Alison x

[Sunsetime in reply to Bluedoor24]

Thank you for sharing your experience, it’s been the post op complications that got to me. Getting the nose tube in after being sick then having to sleep with it in was the worst. You did so well with those complications and so good you’ve been on holiday, that’s one of my goals for next year. The doctor has just been, I can have the catheter out today, chest improving so think everything is going in the right direction now. X

[Kazzh]

Good morning I remember we chatted about surgery and people shared their tips with you including me. It's such a tough journey & we never know how we are going to react and recover being unique as we are! Its so good they got out all visible cancer, that's a good marker for long term prognosis, but feeling ill overides it, I remember it well.

Your emotional health takes a battering too, the surgery and hormone changes, the drugs used and your amazing body going through such major surgery. This can make us feel low and very sorry for ourselves, this happened to me. I felt horrible and wanted to reach out for support and reassurance. So you are doing the right thing. Infact, the NHS leaflet I was given post op explains that weeks 1-3 is when you are most likely to feel low. Plus you've already been through an awful lot physically.

You are amazingly strong to cope with it all & I can assure you it does get better & you WILL feel a whole lot better eventually. Sending love & pls keep us posted. Always here if you need a chat xxx

[Sunsetime in reply to Kazzh]

Thanks Kazzh, I’ve just managed to have a shower and a good wash which has really helped. You’re right about the success of surgery and I’m hanging on to that. I remember reading a post somewhere about the strength we have that we don’t know about, at the time I remember thinking I’m not that tough, I m learning I am and from online communities know how much inner strength we all have. X

[SuffolkJen]

Congratulations Sunsetime on your successful surgery 👏🏻

It sounds as though you have really gone through the mill post surgery (I did too but in a different way) but how amazing to hear you are already recovering from those complications.

It’s the mundane, little things that you can achieve atm like having a shower that lets you know you are stronger than the day before…

Keep on keeping on you’ve got this - the operation is done ✔️ onwards and upwards now but make sure you have PLENTY of rest and don’t overdo things too quickly just because you feel stronger you’ve had major surgery after all xx Jen

[Sunsetime in reply to SuffolkJen]

Thank you, yes will need to take my time and not do too much, really hope I can get home sometime this week. Xx

[Bookclublover in reply to Sunsetime]

I’m just here to reiterate what all these other great ladies say.

Firstly and most importantly- your OP was a great success. Congratulations 🥳👏

Yes, the OP recovery is tough. I had the nose tube thing- NG tube? - which is a tad vile, but it was fitted during surgery with Christina Fotopoulou, so I was oblivious to that. I didn’t have the complications you describe, but literally couldn’t get out of bed first 2 days post OP. Day 4 was really challenging with the dreadful bile vomit you describe and appalling loose bowels, but it’s one day.

All this will pass quite quickly and you’ll get much stronger. At some point you’ll realise that getting rid of the cancer and keeping it away is the priority and you’re starting off in a great place.

I agree, things will look much better when you get home ❤️

[Sunsetime in reply to Bookclublover]

Thanks for replying, I am really pleased about how successful the operation was and feeling so much better now. Bile sick is horrible fingers crossed that’s past now. Now the tube is out I’ve had soup and so far it’s staying down. The plan is to introduce solids tomorrow. Not sure how the clots on my lungs will affect the timing of going back on chemotherapy, I still have 2 to go . Anyway, I’ll concentrate on recovery from surgery for now.

[Lara1]

Hello Sunsetime!

You are on the other side of this op, even with all the complications. I cannot offer advice as all of this is ahead of me, but I am so happy for you and wish to encourage you to keep on fighting!

I am starting to prepare for it myself, just had the first biopsy results and it’s OC, seemingly limited to my right ovary.

I hope your recovery will get easier every day. Your strength is inspirational..

All my very best,

Lara

[Sunsetime in reply to Lara1]

Thanks Lara , I am getting stronger I managed a short walk in the ward today, took the suggestion shared on here about trying not to stoop and walked tall to prevent me getting a sore back. I’m pleased with today, shower bowel movement at last , a walk and 2 bowls of soup. I know it’s daunting waiting for the operation, it’s so difficult getting a diagnosis I wish you well in the weeks and months to come. Fingers crossed for an early stage and only affected one ovary. Xx