One year on from oesophagectomy surgery

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Hi  I’ve not been on this forum for a while but just wanted to offer some  positivity  to others who have gone through surgery recently .

My husband had his OC surgery in Dec 22 ..He was almost 65 at the time .He had two thirds of his oesophagus removed and a section of his stomach ..His tumour was situated in the junction between the two.  .

It’s been a year of trial and error with his recovery especially with his food intake …it’s safe to say the little and often eating regime has been both time consuming and a challenge at times .However we took all the advice from the specialists on board and persevered ..He doesn’t feel hungry anymore which at first caused him great anxiety but he’s grown accustomed to it because in his words ‘I’ve bloody well had to !’ Lol .( we’ve found keeping a sense of humour does help ) .he can now eat virtually anything albeit in smaller portions but sufficiently enough to keep his weight stable . .He has now almost regained the three stone weight loss .

His recovery from the surgery has been slow but steady .He has a few issues such as Oesophagitis and non erosive gastritis which is  inflammation caused by acid reflux but it is being kept under a certain level of control with Lansoprazole which he takes twice a day mornings and before bed ..He also finds sleeping upright helps too .  .He also has osteoarthritis in his hips and knees ..a consequence of the FLOT chemo and he now walks with the aid of a walking stick ...He’s always said the chemo hit him harder than the surgery …Life has definitely changed and so has he ...Realistically a person can’t go through all this and be the same person as before ..(He was an active and very fit man before all this)  So it’s been a year of acceptance too …It’s definitely more food orientated with the little and often eating regime but we’ve grown accustomed to it and basically just get on with living life the best we can one day at a time . His dumping episodes have reduced in frequency so he’s happy about that as they’re very unpleasant to experience .On the whole though despite these issues things have settled and improved gradually over the year …We now find ourselves  more relaxed about everything .

I can’t believe it’s been a year already ..the time has passed by so quickly .His 13 months of diagnostic tests and treatment were a real rollercoaster and certainly a real challenge at times but now he’s on the better side we do think the surgery was so worth it for him to have the great possibility of a cancer free future …(He was hesitant about having the surgery at first but now he’s happy he went through with it ) He hasn’t been given the definitive’All clear’ yet but everything is looking positive for him up to now so we’re thankful ..I think his specialists prefer to err on the side of caution as it’s such an unpredictable disease .

I just wanted to say to anyone treading a similar path to Hang on in there ! It’s certainly a difficult process to go through but things do get better given time.. ..Patience  and perseverance are the key to getting through it all ……It’s a unique experience for everyone but you do find your own way of coping with the recovery ..the rehabilitation.and the life changes …Some recover quicker than others and some have complications along the way ..

My husband officially becomes  an OAP in February ..He’s less than impressed lol ..He was a self employed Painter and Decorator for over 45 years prior to his illness ....He's had to accept his plan on returning back to work isn’t going to happen now as he would struggle with the physical side of his work due to his hip and knees …eating regime and acid reflux . ..It’s safe to say adapting to all these  changes is a phycological challenge as well as a physical one too ! 

A realistic view from our experience this past year Warts and all ! and  this is just his experience of course  ..Everyone is different ..Life does go on , albeit differently but thankfully it certainly does go on Blush 

Hope you all have the best Christmas possible and a kinder New Year ! 

.regards J x

  • Thanks for the reply and useful information!! We're pleased to hearcthat you were able to enjoy your Christmas Dinner  x I'll get following your progress andxwish yourself on. Your journey .

    Best wishes

    Vonn

  • Thank you for the reply Dean !! We realise we have a long journey ahead and it's very helpful to read how people get through the chemo and then surgery ! I wish you well as you continue your journey.

    Best wishes 

    Vonn

  • We’re expecting a call from the picc nurse on Tuesday and Hubby’s picc line goes in on 5th (Friday) and chemo on Monday. It’s all coming thick and fast now. 
    Best of luck to you and your husband, and anyone else going through this at the moment. I don’t know a lot about this site but am trying to reply where I can get to grips with it. 
    Good advice a day at a time. I tried to jump the gun a bit at first and now realise that it’s best to cope as things come up. It’s a steep learning curve but we’re getting there. 

    Hope the gentleman who has an op is getting on well and everything goes smoothly. 

    Sending (gentle) hugs

  • Hi Dean. I have just read your post and wish you well for your forthcoming operation. I had mine 9 weeks ago and recovering well. You will be well looked after and I found that the initial/early days recovery was fine, being very tired and slept loads. Obviously discomfort in some areas but the pain relief (I had a epidural block) is very good, and if it’s not make sure to tell them. I had a three way operation and the scar on my neck already looks like a deep crease, rather than a cut; the body is marvellous at repairing itself. So good luck, and will be thinking of you. I used this site many times when I was going through treatment and I recently put up my own blog that explains my story. Best wishes x

  • We're currently waiting for a call with a date for picc line to be inserted as first chemo.o session is Friday 5th January , it sounds like our husbands are going through each stage at similar times , Andy (husband) doesn't talk much about what's going on So it's good to read on here , has anyone continued to work through the chemo as we're getting different opinions ( andy is a chef ) he'd like to continue but really not sure if he'll be able to .

    So many questions 

    Take care everyone 

    Vonn

  • Hi Vonn, yes it is scary, I am finding it very difficult as my late husband (before I met Bob) died at the age 30 of leukaemia. I’m finding that very hard. Anyway, this time it is all going to end very differently and we will come out the other side successfully! 
    is anyone else experiencing this, my hubby doesn’t want people to know, only close family. Is this harder/easier/a good idea etc? I’m honouring his wishes but won’t people be able to tell soon anyway? He seems quite bothered about the possibility of losing his hair at the moment. I said that the advantage of winter is being able to wear a woolly hat out. 
    Sorry about all the questions, I want to get this right for him if I can. 

    Volly

  • Hi Volly,

    I’m not looking forward to losing my hair either. Partly because it’s the only outward sign that there’ll be that there’s ’something wrong with me’. You’re right about wearing a hat when out but I’ll still have to take it off if I go into a cafe or restaurant. But…if that’s the price I have to pay to hopefully have many more years with my wife, children and grandchildren, then I’ll put up with it like I’m putting up with any other symptoms and side effects. What choice do we have??

    Cool Blue

  • I hope all went well today  Pray Andy has picc line in tomorrow ready for 1st chemo on Monday .

    it's feeling very real now ..

  • All went fine today. Knowing better what to expect helped. First time was definitely more worrying but you will be fine. If you read other people’s stories then you’ll also have an idea about what side effects to expect and how other people have managed these. Best of luck for tomorrow and Monday 

    Cool Blue

  • Ask if you can be cold caped I did it on my post op chemotherapy and managed to keep most of my hair . 
    it’s worth asking