Daily behaviour following debulking surgery

This may be a bit of an odd question, and I appreciate that everyone will be different but I'm just wondering what was your daily 'routine' following surgery. Had my debulking about a week ago, got home on Saturday night, so this is my third day home. It's so hard to know if I'm doing too much or too little. I know I'm sometimes quite hard on myself, but my inner (critical) voice is asking if I'm being a bit lazy and should just be doing a bit more?

At the hospital they said oh you'll be fine, you will definitely need an afternoon sleep, but other than that you will probably be able to function as normal as long as you take it easy. (What is NORMAL???? I no longer really know...)

So far, I've not really got 'up' much before midday, my routine has been waking up really early (5am ish) , painkillers, cup of tea as my husband leaves for work, tend to watch TV for a bit till I feel sleepy, and then I've dozed again, for an hour or so before I feel ready to actually start my day.

I have done a few walks (just around the house, or the garden so that I'm being a little bit active...) and then I find I get a heavy tiredness come over me, similar to when I have all 3 drugs on chemo (carboplatin, taxol and avastin) and so I've ended up laying on the sofa again...where I've stayed, bar going for the odd walk every few hours or so...

What did everyone else do during their recovery? I'm just trying to figure out a sort of benchmark, as to what I should be aiming for...

Seems silly, but it's so hard to know what's usual in this situation...

Thanks xxx

19 Replies

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  • Sounds like you are doing all the right things Sarah. Your body will tell you when it's ready for more but your job for now is to recover xx

  • My advise is do nothing for 2 weeks, then gradually start introducing little chores. You've had radical surgery and Up to a few years ago you'd of been in hospital for two weeks. My ongologist told me this and I did as I was told and recovered well. Rest as much as possible. Don't feel guilty xx

  • Not an odd question given they suggested you'd be in a normal routine. Crikey, that's giving you false expectations.

    First week post surgery - I slept a lot. I tried to have short regular waddles. But other than that I 'rested' - reading or watching TV. Daytime TV is really dull. Didnt even lift the kettle.

    Gradually the need to sleep as much reduced. Also I could just feel when it was right to do a bit more. Gradually and at your own pace. If you feel you need to sleep or rest then you need to sleep or rest.

    Even at 6 weeks I had a very relaxed routine.

    When I was told I'd be back to normal at 6 weeks I pointed out my previous 'normal' was daily yoga, 2 hours walking large dog and weekly kickboxing with sparring. Then asked them to describe what they meant by 'normal'. Response was 'ummm'.

    The local cancer charity staff were much more realistic and told me not to expect too much for 6 months. I think they were much more on the mark.

    I returned to yoga class at around 4 months but with the teacher constantly asking if I was ok and me only doing what I felt I could do. Though I decided I couldnt return to kickboxing - even after surgery healing the risk of being hit in the stomach wasnt worth it.

  • Not a silly question at all - i concur with all responses below. You've had a big op and your body needs time to rest and recover, not only from the physical sides of things, but emotional as well. I think too often people underestimate the effects of surgery in general and things like anaesthetics have on our body. After both my ops, the first two weeks were a bit of a blur, but mainly spent sleeping, resting, gentle walking about and not much else! I was lucky that my hubby and i work for ourselves and are based at home, so i had him running around after me which was lovely. Try to be a little kinder to yourself. Read, watch TV, listen to music or podcasts, move about but don't do anything too strenuous for the first few weeks and even then, after that, listen to you body and don't stretch yourself too much as that'll only put your recovery back. You're not lazy, you've had surgery! Jemima xx

  • Totally did the same as your doing the early wake up call I have no idea why but it was always 5am..... you are doing so well .... not silly at all because like you said what is normal .... listen to your body and rest as much as you need ... you have been through a great deal and it's all catching up with you ... I think it was about 6-8 weeks after op that I started to feel more myself as for the normal thing I guess I have a new normal as the me before cancer isn't the me now lol 😂.... I guess we got to be kinder to ourselves as we begin to recover it takes a long time ... longer than I expected but we will get there 💪🏻😊

  • Thanks all...I love this forum, & being able to reach out to you all, as women who have trod this path before me! I feel a little better having read your responses

    Think I probably was being a little hard on myself & guilt for sitting/laying around but actually having just walked around for 5/10 mins I'm knackered. May need to reign it in a little.

    The only goal I've given myself is to just do a few more steps on the Fitbit each day, but I think maybe do shorter walks more often...

    Now if you'll excuse me, I'm going to settle on the sofa with my pillow, heated blanket & earplugs for a snooze!! 😘 Xxx

  • You are so not lazy! You are doing exactly what I did,,this is major surgery we are talking about and you are doing your best and please don't do anything strenuous for 6 weeks.

    A little bit of gentle walking and gentle pursuits is all that is called for and you are doing those.

    I think we all have a tendency to feel guilty as we were all active, it will return, but don't feel guilty if you are not as you were before.

    We all call it our "new normal" ,embrace it and feel glad to be alive,

    Take care,

    Carole xxx

  • Hi Sarah. Listen to your body, you'll know when you are ready to do more. I imagine if you've always been an active person then you'll be feeling guilty for what you see as being 'lazy'. Trust me you'll soon be back doing all those chores etc! enjoy the rest while you can and let your body heal. Sounds like you are doing all the right things, take it slow, you've had MAJOR surgery - this advice comes from someone who figured out after 2 weeks that if i sat on one chair, then another, then the sofa I could pretty much hoover the whole living room (dont try it!) lol. All the best Kathy xx

  • That sounds familiar, you are actually not supposed to do heaving lifting or bending too much. You are obviously listening to your body and resting when you need to. At the same time it is good to stretch the legs walking around the house and garden. Have movie afternoons and duvet days nothing wrong in this

  • "should" is rarely a helpful word, writing as someone who tends to over-use it!

    This disease, and more importantly its treatment, is pretty non-negotiable and you have to go with what your body is telling you.

    This will change over time. I found it disconcerting to do things I'd never done before like stay in bed, watch the Obama inauguration ( day-time telly!), fail to do things that needed doing etc etc.

    Did this last? No it didn't. Up this morning at 5.30 today as per routine. Did I have to be or want to be? Of course not.

    Make the most of it and try to enjoy it rather than worrying about it. It's healing!

    You sound to be doing really well. xxx

  • I was operated on this time seven years ago and did exactly what you are doing now....resting ans sleeping. I cannot stress enough how important resting is now and evern after 6 To 9 weeks is up you must take it very easy too.

    When you are back at work you will be prepared to give your right arm for even one duvet day in January.

    Take care xxxx

  • Sarahsjourney, I had an open abdominal radical hysterectomy (details on my profile) with a 11" long vertical incision. I was told to not lift anything heavier than a dinner fork for two months!!!! It took me months to heal and I had chemo both before and after the "debulking". After all the chemo I had yet another surgery also instructing me not to lift anything heavier than a magazine for another two months. So, enjoy yourself, read, knit, sew, crochet, snuggle under your duvet and have a cup of tea!

  • Where I live we were given a booklet made up by the CNS with absolutely everything you need to know in it.Even how to get to the hospital,support groups,the names of the team and their phone no's and especially what you can or cannot do for the 8 weeks following surgery.

    I found this very useful.

  • I certainly wasn't what I call normal a week after surgery. I mostly spent the morning in bed reading, do puzzles and listening to the radio, then got up to watch Bargain Hunt and few other things on TV and have lunch. Sometimes dozed off on the sofa. Washed up. Went for a walk round the block and further when I felt like it. I was told not to stand up for long for the first few weeks but there's a common a few minutes away with a bench so I'd sit for a bit, then walk back. I gradually spent more time up and less in bed, doing some knitting and gardening until I felt well enough to volunteer for an afternoon in a charity shop and knitting for charity with a group, who are now my friends.

  • you are doing just fine! I couldn't believe how tired I got just bu getting up and making myself a cup of tea. some days I realised that I was sleeping seven hours and still managing seven or eight at night. Be guided by your body and gradually your energy will improve.

    Jenny

  • Oh my goodness, your expectations are way too high!!! I just had an open radical hysterectomy in December 2016. Now I have a long zipper up my stomach that's slowly healing. After getting out of the hospital I was a human lump that my hubby helped transfer from bed to chair to sofa and back again... Go easy on yourself! I only got moving again on my own after 4 weeks. And by moving I mean making my own tea, feeding the cats and unloading the dishwasher!

  • I stayed IN or ON my bed for at least a week then moved between ON My bed and lying on the upstairs sofa reading' dozing and watching tv. If you had abdominal surgery I can't believe you were told you'll be able to function normally. That didn't happen for me until week 5 ish. You must rest, rest, rest, walk short distances on the same level and stairs are ok from week 2 - obviously if you must go up and down then step by step carefully.

    This is major surgery!!!

    Take care

    Clare

  • Hi, I was given a general gynae booklet in my hospital ( by physiotherapy team, I think) with details of exercises and what to expect each week after debulking surgery/ the TAH ( total abdominal hysterectomy). It was a booklet for anyone who has undergone such a surgical procedure, regardless of whether it was for the purpose of also removing cancers or not. Each week detailed different exercises and different household and outdoor activities ( ADLs), activities of daily living with progression from very light tasks onwards as healing progresses. If your hospital team does not have this information, then the internet will have patient info of what to expect after TAH/ debulking surgery. And/ or contact the hospital's surgical physiotherapy surgical team. All the best

  • Thank you Greenpink already been in hospital nearly 2 weeks! Likelihood is I'll be home maybe Monday?

    Best wishes

    Sarah x

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