Debaulking

[bells]

I have clear cell carcinoma and have radical Debaulking surgery later this week. Any advice on questions to ask surgeon or what to expect in terms of my recovery period so we can get prepared. Thank you

[Hidden]

Hi Bells,

I have a near-phobia about hospitals, and was told I would be in for 7days. I stayed for 3 nights. I did still feel pretty ill for 24-36 hours after getting home, but having my own bed, family and dogs around was worth millions to me. I did try to feed the horses the same evening I went home - definitely a step too far!

To be honest, I felt that the op and immediate recovery were just to be endured, and I needed to get through them. Ater the first week, I started to feel a good deal better. After about 10 days the metal clips were removed, and then I felt much more like it. I could drive again after 4-6 weeks (my surgeon said do it when you can control the car on the drive). I had days and times of feeling as if the plug had been pulled out, and I just had to flop in bed, but it all comes right gradually. My chemo started after 6 weeks post op, by which time I was able to cope with it.

Very best wishes for your op and complete recovery!

Isadora.

[Esther]

Dear bells,

From my experience, be prepared to be in hospital for around 5 days and to do as little as possible for a couple of weeks after. It is important not to do any lifting at all - even light items - and to avoid twisting and bending over. I tried to do too much and really set myself back, so I would definitely say don't try and be a hero, and lay on as much help as you can for a few weeks.

Also - again in my own experience - try at talk to him/her before the operation about hormone therapy if this is an option for you. I took me a few weeks to get this sorted after my op - especially as it is difficult getting to appointments etc.

Good Luck, Esther.

[SaraL]

It depends on how detailed you want to be, but you may want to ask for the histology - the report that is done after your op. It has more on here than is ever discussed at your meetings with the surgeon.

Definitely no lifting until the six-week mark - even if you feel well enough to do so - otherwise you risk developing a hernia and delay to your healing . I made the mistake of lifting my small children at around week 5 which put back my recovery by a couple of weeks.

As my surgeon ominously (but correctly) told me before I went under the knife, keep your eyes and ears open at all times while in hospital. No matter how good your care is while there, you are the only straight line in your treatment. Hand-over between nurses can cause misinterpretation of data - i.e. if you find out you are allergic to a particular painkiller, you need to make sure the next nurse does not try to give you this. If you hear the surgeon say you need a blood transfusion, listen to how many pints he tells the nurses you need, and check this is what you've had. This is not to make you nervous, just to help you be more aware and prepared.

Good luck!

SaraL

[MargaretJ]

Hi Bells!

I had debulking surgery in jan 2010 and am due a further op to ramove another tumour in Dec this year. Remember to ask how long you will be in hospital, how long before you can drive, what restrictions are advised on moving things and, if you are planning Xmas away, how long before you can travel.

Also ask what level of pain to expect. I did not and assumed the pain was "normal" and had abscesses before my temp shot up and I was whipped in for intravenous antibiotics and blood transfusion. Scream early and get the antibiotics while you can. Even my GP did not realise how serious it was because I thought I was just being a wimp. Next time I plan to scream loud at the earliest sign of pain!

[sarah1963]

Hi Bells

It was 3 years ago for me so all I can remember are the important bits. It was a relief that I would be rid of the thing. The epidural I had was a bit hit and miss so I was given a bit too much pain relief over all. That resulted in me throwing up while the surgeon sat on my bed. No big deal though in the scheme of things. I had a bit of a roller coaster of highs and lows afterwards. The op had been a success but I had to accept that it wasn't the end of the story.

Don't try to be superhuman after the op. It will be tempting to try, in the run up to Christmas. You will just have to accept that you cannot do stuff. I don't know what your family circumstances are but the best thing you can do for them is to stay calm, shop online and write a few cards. Just sitting there in one piece on Christmas day is all you should aim for. If you are really desperate (like me) you could take up knitting. So sorry to sound bossy. Us women love giving advice.

Lots and lots of good wishes

Sarah

[ScardyCat40]

I had my debulking surgery at the end of June this year and to be honest it was a lot better than I expected. I was on the accelerated recovery programme so I had to drink some high energy drinks the day before. I had an epidural as well as the anesthetic so i felt no pain when i came round but they remove that after about 2 days. I was in hospital for 4 days then I was sent home I was told I could lifts things up to 1kg. I was sore and felt bruised for about 4 weeks then it really started to feel better in the last couple of weeks.

I was encouraged to do a little bit of gentle walking a little bit each day and this really helps to get your bowels moving again - they may want to give you an enema before surgery.

No aerobic exercise for 12 weeks but all in all it was a lot better than I expected. Make sure you have lots of your favourite DVDs to watch as you can get a bit stir crazy.

[spanishanna]

Oh ladies, Sorry to have to put a dampener on things but I really was 'the odd one' out here'. My surgery was awful. I ended up in intensive care for 8 nights with another 6 nights in hospital and also suffering from fluid on the lungs, maybe that is because I am asthmatic. I lost 1st 5lbs in those 14 days and was taken to the car in a wheel chair as I was so weak. This however didn't stop me, I got up every day, did little things about the place but no heaving lifting or work. The worst thing I found afterwards were the hot flushes, the bed wet through every morning, it was dreadful. I was prescribed the small cartons of liquid food from the chemist to help put the weight back on and I started chemo exactly 6 weeks later. I was stitched but then 'super glued' a week or so after surgery just to make sure the wound remained closed.

The whole experience is something I would not want to go through again, so sorry Bells hope you don't have my experience. You probably won't, I am always the exception to the rule even with my chemo treatment !!

Good luck.

Anna xx

[bells]

Thank you so much, all of you for your replies. Comforting to read that most of you all had a similar experience post op. I am a shocker when it comes to hospitals, drips into all areas and operations. So parts of your experiences are comforting.

We met with the consultant today and as ever I come out totally expecting the worse, my husband has to remind me what the positives were - no masses found in MRI, ca125 down again for a further week - but there are other complications and I am sure intricacies that I have yet to expect to learn over the forthcoming weeks and months.

My best to you all, Bells

[TinaWright]

Hi Bells,

Just to wish you all the best for your operation - I agree with everyone on here, just DON`t try to run before you can walk. Give yourself permission to slob in PJ`s all day, stay in bed, watch TV and read. Eccept as many offers as there are, its ok to let everyone else run around after you. Pace with the visiting cos that can tire you out too. And get the visitors to pop on the kettle, don`t you do it. This is a big must, it will speed up your recovary.

All the best will be thinking of you!

[Hidden]

Dear Bells

Good luck with the debulking. I had a radical hysterectomy and debulking in April and apart from a massive amount of gas didn't feel too bad at all. I understand from the staff that gas is used as part of the operation and it takes a couple of days to get rid of it.

I wish I'd been given some warning. Somehow the discomfort from the wind as always at night and on the second night the nurse gave me some warm peppermint drink which helped a lot. Another nurse said the only way to get rid of the wind is to walk and I can vouch for that. On the third day I left the ward and walked to the staff canteen and hey presto on the way all the wind just whizzed out and I felt a whole load better.

Don't be afraid to ask questions - nurses seem to have different bits of advice for you.

xxx all the very best with your hospital trip. xxx