two weeks post esophagectomy

[pegcburke]

I'm a 61 year old female who was diagnosed with stage 3 esophageal cancer. I completed 6 weeks of chemo and radiation and after about two and a half months had an esophagectomy. I was in the hospital for 8 days and am now recovering at home. I'm doing okay but still having some trouble with breathing (was sent home with a nebulizer). No pain, per se. I'm on a feeding tube at night and trying to eat soft foods several times during the day. I don't have much of an appetite. I lost my voice, though, and find that very depressing, as it makes me feel very isolated--I live alone and would love to be able to pick up the phone and reach out to friends and relatives. I have my first post-discharge appointment with the surgeon tomorrow.

[paintersteve]

Hiya Peg , all the best with your appointment tomorrow , I'm sure all will be good , I had stage 3 oesophageal cancer , had chemo and surgery 4 yrs ago , it is a hard journey but all will fall into place , it just takes time your appetite will return it takes a while, there are some wonderfull people on this site , we are all in the same boat and all help each other , I am now back to full time work and realy enjoying life , forieghn holidays , walking my pup, just remember there is life after this op to be enjoyed . steve

[pegcburke]

Thanks Steve, for the encouragement. I had been dreading the surgery so am glad it's behind me! I didn't expect the breathing problem, but it's getting a little bit better every day. I knew that it would be a big adjustment with dietary changes and having to sleep with my head/chest elevated so am just coping with that and taking it a day at a time. I was surprised that I didn't experience severe pain after the surgery, but mine was done laparascopally and robotically by a very experienced surgeon and I was fortunate not to have any complications (except for breathing). I'm taking an 8-week leave of absence from my job and have no idea if I'll be able to go back to work full time after that.

[brucemillar in reply to pegcburke]

Peg

Well done you on getting through the surgery.

This is a great place for information and support.

I am now eighteen months post op. What you are finding is normal. Things do get better every day, some days it won't feel like it, but over time you will start to feel good.

Try to keep positive. Your voice will return. Keep asking here when you are unsure. Be wary of GOOGLE, people tend to post up the negatives.

Good luck.

Bruce

[haward]

Morning Peg. I couldn't agree more with the others here. You'll get great support and advice here from people who have been there and back. I'm coming up to three years post op and living a more or less Normal life. I lost my voice too but that's because they gave me a tracheostomy as I wouldn't wake up - it took five days before I awoke.

If you would like to talk we do have a helpline. It's on 01217049860.

Haward

[MarkieJ]

Hi Peggy

I'm a 51 year old male who had my Ivor Lewis on 8th January this year and left hospital on the 18th January.

I want you to know what's possible if you are lucky and have a positive mindset. I know not everyone is as lucky as me and I feel extremely fortunate to have had such an amazing medical team as well as friends, family and relatives that have supported me all along. Not to mention the fantastic people that are on this website. I too struggled with breathing immediately after my IL and my breathing is almost back to normal. I struggled big time with eating puréed food but I'm already not far off eating 'normal' food, with what I want, when I want and that's just 8 weeks post op.

Like I said, I know I'm ahead of the curve (being fit and healthy and only 51 helps apparently) but I just want you to hold on to what is 'possible'.

The alternatives are dire and so make the most of this website and all the helpful support people give you, it really was a comfort to me in some of the darker moments.

Let's say we've most of us been given a rare second chance so for you, like me, we have much to look forward to.

Your health will return over time (don't deny that it's major what you have been through) and that we will all, especially you, get an improved health and lifestyle over the next year.

I wish you well in your fight back to the top, you sound like you'll make it.

If you are looking for someone to 'share' with then use everyone and the helplines on this site, plus get yourself along to your local Macmillan centre and talk to someone there. The local one to me was a humbling experience for me and made me feel so much more positive.

Best of luck

Mark

[fortunatus]

I think you are doing splendidly given the enormity of the surgery. Just to make you feel better, I was 71 when I had my Ivor Lewis and because of complications (leak) had to spend 8 weeks in hospital including 2 in ITU and a couple of days in an induced coma. On the other hand, I had wonderful emotional support when I got home from my wife, despite a very difficult first two months. This home support is something you apparently don't have, which makes it tough. But you will find this site a very helpful forum for getting things off your chest and the advice is generally well informed and the reinforcement of shared difficulties reinforcing. The immediate problems you refer to are I think pretty common and will resolve themselves, although one will always have the unavoidable residual problems associated with oesophageal cancer surgery.

[Hidden]

On the question of breathing, the lungs do sometimes take a lot of time to recover, and this affects your overall energy levels and how well you feel, but this does gradually improve. You will probably feel very vulnerable around your chest area, but if you can very gradually try and take deeper breaths, this will help, but you will have to be guided by the need for the nebuliser.

It is possible that your vocal cords might have been strained somehow, and I think that would be something to check with the surgeon. But meanwhile keep your mouth moist. Sometimes we can strain the voice when we do not breathe properly, and this can be an issue after surgery. Your stomach should go out (but I know that this is not easy at first). Otherwise you do not use all your chest to project your voice, and your voice gets strained. (It's quite normal!).

It is a great effort to manage on your own after this. You are doing the right thing eating little and often with soft food. You also need to give your body its own time to recover; it always takes a lot longer than we wish.

Visits from the right friends could be very helpful. It is a big test of resilience, and any people find that calling in to a Maggie's Centre or equivalent, and talking things through about how far you have got and where you have reached is a really helpful thing to do.

[pegcburke in reply to Hidden]

I had to chuckle when I read your post about how to breath correctly, re "the stomach should go out." I'm not even sure where my stomach is anymore or if it's big enough to go out. With the surgery the top half was removed and the stomach pulled up to get attached to whatever was left of the esophagus (so is my stomach inside my rib cage competing with room for my lungs??). It's kind-of confusing to me. Ultimately, though, I think I know what you mean about deep breathing and will continue using my spirometer to expand the lungs.

[AlanWare]

Only 8 days hospital. I would say you are doing very well. Sorry to hear you can't talk as having a good moan can be very therapeutic. If you are able to eat is a good sign I am 26 months post and can still only manage one very small meal a day, so keep up the good work. Some recover better than others. I suggest you ask your team for a breathing exerciser. It is a device you use to suck on. It helped me no end.

[sallym]

It is very very early yet but it sounds as if you are doing well. Side effects from this come and go but it does take time for our bodies to adjust. I still get short of breath, and my voice has a life of its own at times, but I am still here and it is 22yrs since my operation. Look after yourself and take care, it does get easier with time.

sally

[pegcburke in reply to sallym]

Wow--22 years post surgery! That's amazing and wonderful! (I'm curious as to what stage you were in when diagnosed?) Yes, it's still early so I'm hoping both my breathing and voice get better day by day. It's been a "day at a time" path since my diagnosis in October, so I'll just continue on that path.

[Vpiacuklis11 in reply to sallym]

Congrats on 22 years! I'm almost 9 years out! I have yet to find anyone besides this sight who has survived as long as me. It is a long, lonely, happy, rewarding journey. Everyday is still a new day! Some good and some better!!

[sallym in reply to Vpiacuklis11]

Perhaps  one of rewarding things is the change in outlook. Suddenly every thing needs to be done sooner rather than be left for later. I've achieve more than I would have done if I had not been ill.

I do know some people who have survived over 30 yrs. Every day is a bonus

It is a very unpredictable journey but there is always plenty of help, advice and support on here when the going gets tough. Good luck sally

[sallym]

I was diagnosed early and told radium would be the palliative treatment. We were not staged in those days. Chemotherapy was not available as no drug was thought to be affective, it was piloted about 2 years later. When I went to see the oncologist she said that she would like to refer me to the surgeon for possible surgery.

No centres of excellence in those days but I had a surgeon who was capable of doing the surgery. A frustrating delay of 2 months and I had the operation. Although the tumour was small it had already spread to the nodes in my stomach.

It was several years later when my surgeon confessed that he had hoped he might be able to give me 3 more years. I'm now into my 22 year and send him a card every 5yrs to remind him I am still here and thank him.

A lot of research has happened since then and tremendous strides forward.

I have adapted to the side affects but it does take time and you have to walk before you can run , a sense of humour and a positive attitude have been very important.

I'm 80 now, fraying round the edges a bit but still swimming , out every day, causing mayhem, enjoying the grandchildren I wouldn't have seen, BUT I still remember those difficult days at the start. Take care and look after your self. Sally

[pegcburke in reply to sallym]

Thanks for sharing that information. Wow--that's amazing! Obviously you were at a Stage III if the cancer had already metastasized to lymph nodes in your stomach. (they found cancer in one area of lymph nodes near my stomach too but the surgeon believes he got it all with my surgery). You were fortunate to find a surgeon who could do the surgery and that it worked out! In a sense, you paved the way for the rest of us!

It sounds like your positive attitude has helped keep you going too. I think that's so important and hope to be able to share that outlook. My mother is celebrating her 98th birthday this weekend and I believe her positive attitude has contributed to her long life. I met with my surgeon yesterday and he okayed me to drive again, so I'm planning on surprising my mother with a visit (she lives about an hour away from me).

You take care too. Peggy

[sallym]

Well done and congratulations to your mum. I'm sure she will be delighted to see you

sally

[Vpiacuklis11]

Hi. I'm about to reach 9 years out. I like to say I have good days and better days! It is a process but it truly does get better. One thing that helped me was to get a personal fitness trainer for a few months. She ever so slowly helped me be able to build my body strength back and helped me to start breathing deeper again.

Life may never be what it was, but in some ways it will be better than it was before. Just keep trying til you find what works for you.

We're so blessed to still be here and there's people that need us! You can do this!

[pegcburke]

Thanks for the encouragement!