Life Post Operation

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Everything I read and everything I hear about this operation is truly terrifying. I would do literally ANYTHING else to rid myself of this awful disease.

I understand that I'm fortunate to be given the opportunity to even have the op but the stories on here  both about the op itself, the recovery time and the  changes to quality of life forever after are making me question whether this is the best way forward for me. Sorry to burden people with my concerns but if anyone post op can offer any advice on the subject I'd be very interested to hear from you 

Many Thanks 

Anthony 

  • I had an oesophagectomy 30 May 2023. And so far so good, recovery from the op has gone extremely well. 


    I was in hospital for 14dys.  While in hospital my pain relief was reduced to paracetamol. Discomfort was on the right rib cage, due to surgery around the lung. This was the only pain relief I took when needed.

    My appetite was suppressed after the surgery. Fast forward to June 2024 & I get hungry. 

    What to eat was by trial & error. Certain foods my body rejects ie anything creamy high/fat content & bread/carbohydrates make me fatigued. Still if I fancy it, I’ll eat it but not as much as I’d like. Food intake has increased & tastebuds have changed. Overtime you’ll know what works & what doesn’t. It may sound boring, I pre plan meals so I don’t get hungry. Being hungry leads to bad food choices. 

    Physically I’m mobile. On discharge, I was walking around unaided in Tesco’s getting a few provisions.

    To get my lung back to fully functioning I gave up on using the pump & favoured singing (badly) via karaoke on YouTube. My singing hasn’t improved but breathing has. 

    Hope this offers some comfort 

  • Thank you for your response 

  • I was like you when I see the side effects of the i v op and asked my surgeon if there was an alternative he basically told me it’s the best chance for life . 
    what we all have to consider is that we are all different and after talking to many post op the surgery can vary in the amounts of stomach that is removed and I beilieve this plays a big roll in how our post op eating will work and develop ! 
    don’t get me wrong there were times after the op when things feel very difficult that you question why did I go through with it ! 
    but as time goes on it really does get easier and more back to new normal , not quite the same but better than the alternative .i have been told all through this treatment that it’s a marathon not a sprint and by understanding this does help stay the course . 
    good luck 

  • Thank you Mark 

    Unbelievably my partner was also diagnosed with breast cancer just before me too. This is indeed a very cruel world but we have to keep the faith.

    Wishing you and your family all the very best 

    Anthony 

  • Hi Anthony. I read your post last night and wanted to respond fully so waited until today, when I can think things through a bit more.

    Naturally you are apprehensive about the operation and what may follow, but my mindset was totally focused on getting the cancer out of my body and from this perspective, I wanted the operation. 

    I went into hospital at 7am, 31/10/23. This part is a bit stressful, not least because you have to kiss your nearest and dearest goodbye. You are kept fairly occupied though as the various Medics, who will be taking care of you, come and say their bit. I went down to the theatre at 8.30 with my husband, having kissed my daughter goodbye a few minutes earlier. Then straight into the theatre. I had an epidural, which took an hour to insert (I believe this is unusual). They couldn’t find a way in easily through my vertebrae and sitting forward for an hour did make my neck ache. A kind Doctor took pity on me and held my chin. After that, and as soon as the epidural was inserted I remember absolutely nothing.

    After the operation had finished, I don’t remember talking to my Surgeon, even though she assured me we did have a short conversation. The next morning I was in ICU and my husband and daughter came to visit me. They were surprised how alert and focused I was. I had already been out of bed for a mini walk with the physiotherapists. I do remember being very thirsty and a few sips of water, and a bit later a weak squash tasted so lovely. 

    After four days I was moved to an Upper GI ward, where I was allowed to shower and dress myself (obviously with all the tubes hooked up to drips on a moveable stand). I didn’t eat until about day eight, where I was allowed some puréed mush. I began walking further and further over the next 8 days up and down the ward.

    Once home, I took things very slowly but did manage short walks and ate squashable foods, and slept loads. I was on morphine and paracetamol but gradually took myself off them. The worst discomfort for me was a constant ache from the incision under my ribs, which felt totally numb yet painful. (I can still feel a strange sensation now but it’s nowhere as painful). I also had a feeding tube which ran from 10pm until 8am. I didn’t particularly like the idea, but it gave me no problems and did sustain my calories so I didn’t  lose much weight. After theee weeks it was gone. 

    I gradually got stronger and enjoyed Christmas at home with various family members staying over. I didn’t do very much at all, which was a treat in itself, being waited on hand and foot! I started travelling from January onwards: Newcastle, Copenhagen, Bologna and the last holiday in Majorca in May.

    I had a blip of something in April where I had horrendous bloating, cramps, diahorrea and ultimately ended up in hospital for a few days. I still don’t know what it was, at first I thought food poisoning but now I’m not so sure. 

    I’ve had maybe four episodes of dumping where I needed to go to the toilet feeling almost like I was going to pass out. The episodes last for about 30 minutes and then I slept it off. 

    I’m eight months on now and generally eat anything I want to, but smaller amounts and not too quickly. I’m not out of the woods and can occasionally feel a bit wobbly, but I recognise the signs and take it easy.

    I hope all this helps Anthony. Everyone is different. Anything at all, just post. You don’t say when your operation is scheduled for. 
    With best wishes,

    Julie 

  • Thank you Julie it's much appreciated. I thought that the epidural was put in after the anaesthetic? 

  • For me, it was the first thing I encountered, but each hospital has its own way of doing things. I was in Addenbrookes, Cambridge. Best wishes, Julie

  • Hi Anthony

    I understand your reticence. I felt the same way especially the night before. I watched a video on it and regretted that tbh. They give you a lot of pain relief which is great. I unfortunately didn't respond well to fentanyl as it really made me feel drugged up and I found it difficult to walk for the first few days until they changed the meds. That lack of walking led to a partial lung collapse but tbh that righted itself in a couple weeks even with covid. Yes it took a while for the feeding/eating to get better. I didn't enjoy the feeding tube but i didnt need it for long. 18 months on and I'm basically back to normal.  Yes my meals are slightly smaller but not by a lot. I sleep a on shallow wedge pillow and I take lanzoprozole every  day. If I eat a lot then I don't go walking straight after. For some reason i can't do pilates anymore which is a shame. Really the changes are slight. I don't regret having had the surgery. Yes there were some really hard times I won't lie but I don't regret the surgery. I have a chance now to watch my son (my reason for being)  and my nephews grow up. I also feel that there still so much more I want to do. I'm not done with life yet and I hoping it's not done with me yet. 

    Just wanted to wish you all the best for whatever you decide to do

  • Hi Julie,

    You’re exactly 4 months ahead of me so it’s interesting to read how things are with you now. Like yourself, it took them about an hour to get my epidural in and for the same reasons. I also seem to be able to eat most things, albeit in small portions, but often need to go for a lie down afterwards. I haven’t experienced any dumping that I’m aware of and seem to have managed to get the reflux under control with the use of pillows in bed and a couple of spoonfuls of Peptac at bedtime. I get tired after very short periods of any sort of physical exertion but hope that this will improve a good deal in the next 4 months (have a holiday to Tenerife booked for November). My surgeon told me that recovery can take 6 months to a year so I have to remind myself that I’m actually probably doing okay. Best wishes, CB

  • Hello.

    I am 8 months post op, and have just had another clear CT scan (results yesterday). I had my operation in Southampton by the team that featured on Surgeons: Edge of Life (Hope) - last series that was on TV. If you're squeamish, perhaps not for you, but it shows the Ivor Lewis Oesophegtomy that I had. Wow! What they achieve is amazing!

    I did have a complication afterwards, but now I honestly do feel in the best shape I have in years! I lost 3 stone (mostly due to post op chemo which was horrendous - I'd rather have another op than go through that again), but longer term I'm happy I went through what I did and am now having constant reassurance I'm clear.

    I'm on the SARONG study for intensive follow-up so will have a CT scan every 3 months for 3 years  and another endoscopy after a year. For me personally, I'd rather have this reassurance, and my team have been outstanding. The care I have received from before the op to now has been second to none, I couldn't have wished for a better outcome.

    My life is back to normal again now. I live on the Isle of Wight and went to the festival last weekend lol :-) I can eat what I like, albeit smaller portions. I am a natural grazer though, nibbling throughout the day and a main evening meal, so as long as I don't overdo it, the dumping is kept at bay. I have had about 3 episodes of it, and am still learning boundaries with food, but know that sugar and milk are what I have to limit myself with most.

    In short, my life is pretty much on course to be how it was. I feel better for losing the weight as I had it to lose, and with the help of my wonderful dietitian I am eating healthier and reaping the rewards.

    Faced with other options for treatment, I'd have the operation again in a heartbeat. Peace of mind it's been cut out and gone, and being monitored closely now... I am definitely one of the lucky ones. I looked at it as "short term pain, long term gain", and yes it's unpleasant, all operations are, but this is life saving.

    Wishing you all the best for your decision making. Ultimately you have to do what YOU feel is right for yourself. For me, life is good again, 'almost' normal, and most definitely worth it.