Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Husbands impending surgery

Annie7575
Posted by

Hi everyone it's Annie. It's been a few months since I last updated you. My 48yr old husband was diagnosed at Christmas with osophagul gastric joint cancer. He was staged at diagnosis as T3 N1 M0 He completed his 3 cycles of ecx chemotherapy back to back on March 29th. We were lucky enough to go through it with minor fatigue no delays between cycles. We had ct scan which has shown moderate decrease in tumor disease stable proceed to surgery may1st or before. H3 attended pre op assessment last week. They are very impressed his fitness has not declined at all during this process. Surgery is set for May 8th. I believe the optimal window for surgery is between 3-6 weeks from end of chemotherapy. His surgeon told us because of fitness he is going in aggressively originally it was to be below left rib. Now he's going in from near middle of abdomen and around to right side and up to oesophagus he said it's similar to how a shark bite night look. His record on lymph node removal is 26. We have every faith in our surgeon. But naturally we are scared we are praying that this operation is a success and we can get back to our every day family life. (Have a lovely cruise Brent) I have been reading on here regularly and I've noticed the kind support you and several other survivors take the time to give to people like me. So thankyou with all my heart.

BrentS
Posted by

Hi Annie

Arrived in Miami last night. Boarding our ship a lunch time. Warmer here than at home!

Thinking back to my surgery. It was six weeks after finishing chemo. My abdomenal incision was a horizontal symmetrical crescent shaped cut about 11inches just under my ribs. The one at the back was the ‘shark bite’. Starting from high up between my shoulder blades following the curve of a rib down to under my arm pit, again about 11 inches long. So with these two plus the two stab wounds where the chest drains were inserted ‘I’m a bit of a head turner around the pool! They healed nicely so actually they’re not that stand outish!

My surgical team took 29 lymph nodes! A bit of an odd number I thought. I still can’t quite comprehend the lymphatic system! I did have a minor set back where there was a lymphatic leak, noticed when the chest drain fluid became cloudy, but if noticed early enough it’s not a problem; they just changed the feeding fluid to fat free for a few days till the leak healed.

Well, I’m going to get my swim shorts on and see what the pool’s like!

Counting the days, making every day count.

Brent

Annie7575
Posted by

Hey Brent,  29 lympnodes is fantastic.... I'm so anxious I just cant wait to get my hubby to surgery equally i do also understand the seriousness of the operation but its a life saver. We have 4 weeks to go but it feels like months when you're desperately waiting for it. Before this disease was diagnosed we had a week holiday booked for abroad with the children end of July and a Caribbean cruise booked for Jan 4 2020 just the two of us from Barbados. We love cruising. On my husband's surgery date this time last year we were on a norwejian fjords cruise or was spectacular. What a difference a year makes. Enjoy your holiday and Thank you for your support. Annie.

KevRover
Posted by

Hi Annie, it sounds like your husband's case has many similarities to my own, in terms of age, general fitness, and timeline etc.

I was diagnosed in Jan 2016 at T2N1Mx, aged 49 at that time, had 3 pre-op cycles of ECX (no major issues) then had the op on 1st July 2016 ; my surgery was a 9 hour key-hole operation, followed by 3 days in ICU then another 4 up on the ward ; was discharged from hospital 8 days after going in.

I had 15 lymph nodes removed, all of which came back negative; the post-op chemo (mopping up) was much harder than pre-op and in fact I managed only 2 and a bit cycles even with a slightly reduced doseage.

I was back at full time work in the October of 2016 and have never looked back ! With a few minor changes in diet (cakes are a no-no for me!) I must say I feel fitter and healthier (in mind and body) than at any other time in my adult life ; I am down to a 32 inch waist (from 36inch) and have had stable weight since around January 2017.Will be going on my first cruise in August with wife and three kids (18,19,21) ,being treated by father-in-law as part of his 70th birthday celebrations so am looking forward to that.

I am now just on annual (August) checks with the surgeon's team.

Wishing your husband all the very best for the 8th of May, I will be thinking of him. If you have any questions in the meantime just shout! Lots of very helpful folk on here.

Cheers

Kev.

Annie7575
Posted by

Hi Kev, thankyou so very much for writing about your experience. I am 43 my hubby is 49(48) on diagnosis Christmas week. You seem to have gotten your life back very well and then some I'm so glad for you it's a terrifying disease. Since my husband's diagnosis I'm living with fear and dread. He is my best friend. I live every day  in genuine turmoil and heartfelt pain watching him on this journey. I hold everything together,watch him like a hawk. I question medical professionals,keep on top of medication the children the mortgage  tbh I've turned into a drill sergeant but inside I'm crumbling and fragile. I miss my best friend and whilst he's here a part of him is missing..stolen by this disease. I want my husband back i want our simple every day life back. I want to stop crying myself to sleep every night. But most of all I just want him to live. It heartens me to hear from survivors. Thankyou from my heart.  Best wishes Annie

jayceeh5
Posted by

Hi Annie, 

My husband had surgery 10 years ago, if I can help at all just let me know.  It’s a really frightening time and, if you’re anything like I was, it is a very lonely time even though you are surrounded by people.  You are coping with such a lot, both of you, your personal strength will help so much, take a little ‘time out’ when you can (I found dog walks ideal and she patiently let me cry all over her!) even if it is brief. Very best wishes to you both.

Annie7575
Posted by

Hi Jayceeh, thankyou for your kind reply. You're so right it is a frightening time and it is so very lonely. Dog walks are a great idea I find I'm functioning (just)on auto pilot because I have too many people depending on me and I just cannot fall into a heap on the floor.  But when the house is asleep I cry. I feel like the closer we get to surgery and I know we are extremely lucky to get the option of cure...the scarier it gets I worry that because it is 38 days post chemotherapy that this disease will get out of hand again. I'm scared of the date being pushed further away. I've always said from the outset I will breathe easier after surgery,nor minimising how much rehabilitation will be involved after or anything just that we'll hopefully be moving in the revovery zone then. I really appreciate your support. I don't know anyone who's ever gone through this personally so people in my  circle only understand minimally what's going on and why would they know. Tbh I'm glad they don't because I wouldn't want anyone to go through this pain. Best wishes Annie 

BrentS
Posted by

Hi Annie

My wife and I are so very lucky to be retired and have the wherewithal (and not forgetting both sufficiently healthy now) to be able to enjoy long haul cruises. We were in India and the Far East this time last year! A world away from The west coast of North America! I was diagnosed a few weeks before a booked cruise round Australia. We obviously had to cancel but did a cruise round New Zealand AND Australia two years later. So did you cancel the Barbados cruise, as it’s still a fair way off? We went on a Black Sea cruise in the July following my surgery in February. Taking it easy, obviously.

These next four weeks are an important time for your husband to regain strength and fitness before the next physical onslaught. The surgery is brutal and the recovery is gradual, but all being well, you could be cruising round the Caribbean next January.

I think most people acknowledge that this disease is a greater mental weight on the carer than on the victim. There can’t be anything worse than watching a loved one suffer, or even the prospect of suffering. Remain positive and pragmatic for your husband but remember to be kind to yourself, too. And I always try to encourage partners and careers to accept offers of help from friends and family. People want to be able to help, but don’t know what to do. So a lift to the hospital, a cooked meal, looking after the dog, a trip to Sainsbury’s. There are ways that others can lighten the load for you.

There will be experiences that we can share closer to the time which will hopefully prepare you and your husband for a speedy recovery. But till then keep planning and looking forward to many more cruises and holidays abroad with the kids and grandkids!

Counting the days, making every day count.

Brent

Annie7575
Posted by

Hey Brent, hope youre having a great time...we have kept the eastern Caribbean cruise really hoping to be on that it will be my hubbys 50th birthday present. We also have kept the July 29th Majorca trip with the children unfortunately it was paid for but our insurance hadn't been purchased. So we have nothing to lose by keeping the carrot dangled. The surgeon seems to think we'll be able to go. But of course we'll see how things go. Your knowledge post op will be so valuable so thankyou very much for that. Enjoy your holiday. Best wishes Annie.

Hedal123
Posted by

Hi Annie

I really feel for you, and totally understand the anguish.

Re the cancer starting to grow again during the waiting time for the operation, I also had the same fears, but was assured by the oncologist that the chemo continues to work for some time after the last infusion, so rampant growth in the period between that and the operation is unlikely, especially as your scheduled op isn't that far off and the chemo has been effective. Try to remember that in those dark moments. Re the recovery, I think after the op, despite the prospect of more treatment to come, it all becomes so much more bearable because you can see/picture the light at the end of the tunnel, so you are right to look forward to the day. 

I didn't use any professional support last year, mainly because I thought I could cope, and on the outside I seemed to be doing so even though on the inside, I felt very much as you describe feeling now. However, I would really advise talking to a professional counsellor if you possibly can now and whilst you are going through this period. I wish I had, as it has helped enormously, and I highly recommend it as a way of coping with what you are going through. I only really fell apart after my husband was declared in remission, a time that I had so looked forward to, meaning I couldn't enjoy life again until after I had dealt with the huge backlog of anxiety, grief, fear etc that had built up over the last year,  but that I had kept so efficiently hidden deep inside.

Btw, we also had to cancel a couple of pre-booked holidays during treatment, but to give you hope:  My husband had his op on 19/04/18 and we went on holiday to the South of France early August.  He was weak after the post-op 4 rounds of Flot chemo, but managed it!

I hope the next few weeks fly by for you, and the operation is a huge success.

x

Annie7575
Posted by

Hey H, thankyou so much for messaging. It is so comforting hearing from you and others. The wait is so hard and I imagine all sorts happening whilst we wait. So thankyou for helping put my mind at rest albeit a bit because I honestly probably won't completely settle my head until we get through surgery. But everyone here is massively helping with support. It is brilliant because this journey isn't understood by others unless they are in it. So thankyou H please keep in touch, Annie