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

  • Hi J,

    Thank you for your lengthy and informative post 

    I have just finished my treatment of chemo, op and chemo. I am struggling to control weight loss due to my now poor eating habits. Also lack of appetite and poor taste. I've been to my GP about it and she is saying it's early days and even though I've lost 32kgs I'm still doing ok. I was very big at 23 stone so had it to loose and actually feel better for it.

    Reading your post has given me hope that I will be ok in the end. Thank you.

    Merry Christmas

    Regards

    Geo.

  • Hi J

    Thank you for all that information it really is very helpful for me as I face my op on Jan 5th. It was moved because of doctors strike but hoping it will take place this time.

    I am having the tumour removed with part of my stomach being used to make a new tube. It's all been explained in great detail including what it will be like after.

    I know it's going to be very different in what I can eat and how much. I'm 58 and quite fit so I'm hoping recovery will be ok but it's hard to tell until it's done.

    I'm a bit scared but have full trust in the team at Churchill Hospital Oxford. I will have chemo again after to hopefully get rid of the cancer completely but know there is no guarantee. It makes you appreciate life so much more when going thy this and everyone has been supportive so I'm staying positive and I'm determined to beat this.

    Hope your husband continues to heal well

    Best wishes

    Dean

  • Hi Dean 

    Good luck with your surgery ..You will be in the most excellent hands and you will be ok ...If you’re quite fit then you already have the upper hand 

    I know it sounds ridiculous but we were quite excited on surgery day as we both just wanted rid of the awful tumour that had blighted my husband’s life for many months

    My husband had two post surgery FLOT chemo cycles …He didn’t complete the scheduled four due to an adverse reaction during the second cycle and a subsequent lung infection ..We took this as a sign his body was saying ..enough !! ( He’d already had a tough time with the four pre surgery cycles so we had a feeling he wouldn’t complete the next four especially as his body was still weak from the surgery eight weeks prior ) However his oncologist told him just those two would go a long way in reducing the risk a recurrence so he’d not to worry ..His treatment ended in March of this year .

    Yes stay positive ..Never underestimate the power of a positive mind ..It can move mountains !  Muscle

    regards J 

  • Thanks JPM for that very informative post. I think I might print it out. Good to have some idea of what to expect. I’m very much at the beginning of this journey. Only one cycle of FLOT completed so far. It’s good to know that some sort of normality (albeit slightly different than just a few months ago) is achievable at the end of it all…

  • Hi ..Good luck with everything .

    You will have days when you think ‘What the heck have I let them do to me ?’ ..but you push through those days and focus on the benefits of the surgery ...You will have lots of support from your medical team too  …It isn’t easy but going off my husbands experience it’s doable if you follow all the advice you’re given and have lots of patience as it isn’t a quick recovery process ..We were  told to allow a year or so for recovery ..This of course was my husbands case ..You could be advised differently .

    regards J 

  • Bless you ,yes I'm looking forward to surgery to the point it will be removing the tumour but know it's a tough road afterwards. Chemo Is tough so I'm hoping the op won't be as bad but prepared for everything. It has to be done so whatever happens will deal with it the best way I can.

    Hope your husband is doing ok, I just hope I can complete the treatment after the op.

    Best wishes

    Dean

  • My husband was diagnosed with oesophageal cancer very recently and will have his picc line put in next week. Is there any advice you can offer on coping with it all? 
    Thank you to you and anyone else that answers. 
    (Volly - nickname)

  • Hi Volly

    I have oesophagal cancer too and have just finished 4 rounds of chemo via a PICC line. The line going in doesn't hurt and takes about an hour. A good thing to get is a waterproof cover for showers, Amazon do them it's called Limbo.

    The chemo affects people in lots of different ways. I had pins and needles in hands and feet, loss of taste and tired a lot of the time. It's always best to talk to the cancer team as they are brilliant and can help with any issues.

    Advise taking paracetamol before and after each cycle as I found it helped.

    My next stage is an op next week to remove tumour then it will be followed by more chemo.

    If I can help in any other way I will but best to talk to your Cancer team .

    Best wishes

    Dean

  • Hi Volly, a big journey ahead and some tough times but if you stay positive and deal with each challenge as it comes you will get through it. Keep away from Google. Look for any answers through your cancer support team. Use the rapid response line or your GI Nurses and on here of course. 

    I was diagnosed with OC last March and have now completed all my treatment successfully. I didn't have my last round of chemo as the three before served me pretty badly and I didn't want to be poorly over Christmas. While I still have issues with eating I am feeling better week by week but it is still tough some days. A lot of fatigue and tiredness still.

    If you click on my name above it will take you to my profile which I have written like a journal/diary. Hopefully this might help but best in mind all our journeys are different but not vastly so.

    Good luck for the future.

    Best regards.

    Geo.

  • Hi Geo hope your recovery is still going ok. My op got moved to Jan 5th because of doctors strike so one week to go.

    Bit nervous but keen to get it done so can continue the long fight back. Just hope it's not moved again as another strike is planned for next week

    Best wishes

    Dean