How do cope with your body appearance change post oesophageal surgery?

Hi Shiela,

I had my surgery on 29th Feb. I was in theatre for about 10hrs as it took a while to get the epidural in. I had several small (about 1cm) incisions on my abdomen and I also have a large scar on my right side (although some hospitals do this part of the surgery endoscopically also). I am still a little numb in the area around this scar. Following surgery it is inevitable that you lose weight and muscle due to inactivity. Initially I was only able to manage short walks around the garden and climbing the stairs was a major undertaking. I gradually built this up to walking to the end of the street and back.  Now, 20 weeks post surgery, I go for a 2 mile walk most days, have been out on my bike a few times for an 5 mile cycle and have started an exercise program involving light weights. As a result, I have begun to regain some of that lost muscle and can now sit down on the garden bench without needing a cushion under my bony butt. I still have a long way to go to be fully recovered but I was warned at the start of this process that that can take up to a year (or sometimes longer) to happen. I’m not really a very patient person so I have struggled with the slow pace of recovery at times. You and your partner have a long and difficult journey ahead. He will need your support more than he ever has before but there will be brighter days ahead. My wife and I have booked a holiday to Tenerife in November and a 31 night cruise in February so my goal is to be fit and well enough for those. I wish you both the best of luck for what lies ahead. CB

Thanks Cool Blue

Many thanks for your sharing.

could we ask how long have you taken to recover after surgery? What we meant how long did you take to go back to resume normal exercise, work & driving post surgery. We understand you mentioned you are in yours 20 weeks post surgery. 
my partner is concerned he might need to take months to go back to work (he works as engineer management which mostly desk job but require him to drive/travel to visit his customers).

your insight/experience would be much appreciated. Thanks again 

Hi Shiela,

Your partner will take months before he’s able to go back to work after his operation. It’s a couple of months before he’d be legally insured to drive after such major surgery. Then there’s the post-op pain and fatigue which means he’ll get very tired and sore after very little effort. Even nearly 5 months after my operation I need to go for a lie down most afternoons and am nowhere near back to resuming what would have been my normal exercise. I am fortunate enough to be retired so didn’t have to worry about taking time off work. I know this answer may not be what you wanted to hear but you shouldn’t underestimate the difficulties of the path that lies ahead for you both. Sorry. CB

Thanks Cool Blue

We are so grateful for your advice & info.

I mentioned to him we need to prepare for months after surgery. But I am concerned his mental status as he has been suffering with anxiety & depression…. It will be challenging with this surgery…. 
Btw, do you able to sign post any useful video/information?

many Thanks again!

When I was first diagnosed, I ordered a copy of this book from the Macmillan website. I read it several times as I wanted to be as informed as possible about the path that lay ahead (I’m a bit of an information junkie). Similarly with all the information leaflets I was provided with by the hospital. What date have you been given for surgery? You are quite right that there will be many challenging months ahead. Your role as support team will be crucial. I can’t even begin to imagine how I could’ve got through it all without the help and support of my wife. She came with me to every surgical and oncology meeting, drove me to the hospital for every scan, operation and chemo session. Left me into hospital the night before my operation and visited me the following evening once it was all over. She visited me twice a day for the 16 days I was in the hospital (8 of them in ICU). Finding someone on this forum whose timeline is similar to your own will allow you to share experiences and compare your journeys. Those who have been through it all will happily answer any questions and share their own experiences and offer any wisdom and tips that they acquired. Ask anything you want. CB

Hi, 

My husband was 55 when he had the surgery, it was 11 hours. He was in hospital for 9 days. We were told it would take 12-18 months to fully recover and most people only get back to about 80% of their previous ‘normal’. We got to 12 months with him walking slower with a stick and getting winded on exertion. The time with the lung deflated (the second half of the operation) can leave a lasting impact. He was eating largely normal but smaller meals after about 3 months. We had to accept the new normal which was hard but what is the other option. I hope your partner has a smooth route through surgery and towards the last doses of FLOT. Don’t expect too much at first and take every day as it comes. It is a long recovery and can be made longer if you try to do too much, too soon. Speak to the CNSs in your team and the dieticians if you’re worried about the feeding tube. It is there in case you need it, my husband never used his but they left it in until his last chemo was over. 

Dear JsyStevie

Many thanks for your sharing.

for me I’m really concerned his mental status as he already suffered with anxiety & depression before this diagnosis…. We only barely went through the tough chemo session now it is surgery he needs to go through…. he feels never ending ‘body torture’ and already has some suicidal thoughts….

I have been addressing this to his GP which he is on waiting list to see community mental health team…

Call MacMillan today explain his thoughts. They can offer free private (bupa) counselling sessions. It will save you the wait. 

Hello Shiela

Sorry to hear about the concerns your partner has about the effects of the Surgery etc. I have not had my Surgery yet but have the same worries and concerns. My situation so far is a bit different to most people. When I first got my diagnosis last December, of Stage 2, I expected to get an EMR (snare) simple procedure but was gobsmacked when the Surgeon said no, it has to be the full Oesophageal removal and I will get a further two or three years!

It took me quite a while to get all those bad thought's out of my head, they still come and go, but reading and getting all the advice from this forum did help.

I only got as far as the third cycle of FLOT when I got an infection and ended up in A&E/Hospital for over two weeks. When I was discharged home my weight had dropped by two stone and could hardly walk I was so weak. But the family all rallied round, we got a bed put in the dinning room so I can get to the downstairs cloakroom etc; and they helped me sort out my chemo related eating requirements. How I now love Fresubin energy drinks!

I recently failed the pre-surgery fitness test, so Surgery has been postponed. I have another fitness test in a couple of weeks, so having acquired an exercise bike and joining keep fit classes I hope to pass.

So as described by “Cool Blue” and a lot of the other posts, support from family, friends and of course this Forum does really help no matter how small. 

I don’t really look forward to the next phase of my treatment, but knowing what to expect and how to cope with it, especially if I can develop a routine to take my mind of things, I will get through. 

Sorry if I have gone on a bit.

Best regards Big Al

Hi   

I'm sorry your husband and your family are on thus journey. I think the hardest part of it all for me was learning to be patient - I'm more of an all or nothing sort. I used to work 50+ hours a week, keep the house and didn't miss any school event, etc. There are some small scars I can see on my stomach and apparently a very neat scar across my back - I can't see it so I'm not bothered by it.  I see them all as badges of honour - they represent the struggle to get through all the treatment and how incredibly resilient and strong my body is.  The post chemo surgery kicked my exhaustion into a higher gear. I felt quite down for the first round of chemo after surgery. 

I found that the long view is what got me through and also I have a young teenaged son I would crawl through hell for. I had my surgery in the January and finished chemo at the end of May. I learned just how much I love walking - finding somewhere beautiful to walk was balm for the soul. I did go to a physio for a programme but I didn't really follow it tbh. I went back to work part time in the September - probably too early in hindsight. I work for myself so I have flexibility around the hours I choose to work, etc. I had a lot of support from my family and my team. Pacing of exercise is all important,  if you push yourself too much then you'll spend time recovering in bed - I clearly didn't learn the patience I thought I did lol. September I was also doing the school run and some light chores. A year after chemo ended  I was walking several miles (up to 6 miles), working and parenting, etc. Now 14 months after chemo ended (I can't believe it's only 14 months!) I'm not thinking about any of it really and I'm fully comfortable in my new normal.  I don't work 50+ hours a week at work- but I don't want to get back to that any way.  I've painted the garden fence, currently decluttering the house, go for walks, go out with friends, and starting swimming lessons next week.  I try to work no more than 4 days a week. My son is sporty so I spend 4 evenings a week driving him to something.

If your husband is prone to depression there are a lot of cancer charities that provide counselling and things like massage and acupuncture.  Also your GP may be able to help with antidepressants.  When you're in the midst of treatment it doesn't feel like it will ever end but it does and then you move on albeit at a slower pace ;-)

Take care of yourself too. This journey is tough on partners and families.