Surviving Oesophageal Cancer

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Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.

I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.

Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.

All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.

I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.

All the best

Crystal

FormerMember over 15 years ago

Hello all

Sorry I haven't posted for a while. I've been looking in though and keeping up with everyone. I am half way through cycle 2 of three lots of ECX chemo - its what is known as a post op top-up, with the aim of killing off any small 'stragglers' Unfortunately, in contrast to my pre-op chemo, which I sailed through, this lot has hit me quite a bit harder. The oncologist did warn me that I might not have such an easy time with the post op cycles, mainly because of the huge effect of the surgery on my system. She certainly wasn't wrong there. Apart from the nausea, I have a horrid metallic taste in my mouth continually, which makes all food and drink taste really nasty. Worse than that though is the tiredeness, which I didn't experience at all last time. It takes very little exertion to make me start sweating and for my heart rate to shoot up. It happened on the chemo unit last week when I was in for my I/V day. They did an ECG, which while it showed a very fast heart rate, was otherwise ok, which is something of a relief. I feel frustrated though, because I had been doing really well with my energy levels and now I feel as though I am going backwards in terms of recovery. Plus of course I lost my hair again and it had only just started to grow back from last time. Note to self:- stop whingeing, its only hair and it never did what you wanted when you had it..

Anyway, its not all doom and gloom. Next week we are going to Lanzarote - me, John, my 2 daughters and their partners, and my grandaughter and her friend. We have rented a villa with a pool and we are going to do nothing for a week but laze around and enjoy being all together. As I'm not 100%, and still on chemo, I know its a bit of a risk, especially being at the airport and on the plane with no immunity and swine flu around. But none of us know what is in the future, do we? I need to grab every chance I can to spend quality time with my family. Its bad enough that cancer has picked me up and flung me into a place I never wanted to be - I'm determined not to let it control my life. My oncologist has given me the ok, we have forked out a small fortune for the insurance, so we're all set. Besides my son in law is a surgeon, so Iat least I'll be monitored (though I should add, he is a gynaecologist. Not much use to me really lol)

Love to you all - Mick, Crystal, Rumbler (you gave me a scare when you went off the radar for a while!), Bad Year, Rose, Happyhorse and everyone on the site. Hope you are all having the best day you can.

Netty xxx

PS Any tips for dealing with the horrible taste would be very welcome x

Does anyone have any tips for dealing with the taste problem?

crystalclear over 15 years ago

(((((Netty)))))
How lovely to see you again, although of course I know you’d rather not be here. I wasn’t sure whether you were on the chemo or not, because that was your query last time, but I guessed you would go for it. I’m only sorry that it’s causing you a lot more distress than the first regime in terms of tiredness and that horrid metallic taste. I’m chatting to a bloke who’s also having post-op chemo and he too is suffering a lot more and also had that metallic taste. I suggested he tried tinned pineapple chunks and make some ginger tea from root ginger. All you do is peel and crush some root ginger (approx 1”) into a mug of hot water and sweeten if preferred with a little honey or sugar. Also, Elderflower cordial can help, as well as eating with a plastic knife and fork rather than the metal ones. Try too, the ginger ale from health food shops. He says that the metallic taste is intermittant now with those remedies, so hopefully they might help you too.
It’s great that you’ve booked a holiday and I’m certain it will do you the world of good. You’ll be fine, and it’s just so important to seize back control of your life.
Take good care Netty and come back and tell us about your holiday.
Love Crystal xx

FormerMember over 15 years ago

Hi Netty and Crystal and all others out there in that wonderful world of ours,

Sounds like you have the right idea Netty, go for that holiday as they say a change is as good as a rest and you should get both .
Sorry to hear of your post chemo woes, trust Crystals comments will help.I opted out of post chemo as I had lost so much weight and now have suspicious thickening of the bowel and awaiting (still) an urgent colonoscopy. Saw surgeon on friday and he didn't beat around the bush and prepared us for a secondary cancer as he (and I) can feel the lump. But what do doctors know? (see last line of my profile) It may just be something stuck there wouldn't be surprised with all the gurgling which goes on there!!
Any way we really enjoyed our two week holiday it was the best thing we could have done - we are still talking about it even though we have been there many times before. Go for it .

More good news is that I have put on a kilo in the last 4 days - now up to 60.2!!! So almost ready to make more hay. I can hear Sharon chuckling in the back ground.
Take care out there you lot.
Cheers Ben.

FormerMember over 15 years ago

sorry I can't seem to find the right place to add my post.....

crystalclear over 15 years ago

((((Ben))))
Always thinking about you and so I’m happy to see you here. It’s unbelievable though that you’re still awaiting an urgent colonoscopy and I hope by the time you read this that you will have had it and that it’s not what you feared. Your last line of your profile is right, ‘Doctors don’t decide how long you live –you do.’ Stay as positive as you can be Ben. If it is secondary as the surgeon has warned it might be, then I know you can get through this too, I know you can.
Having just looked at your profile for the first time in ages, I see you’ve posted a lovely photo. Now I’m inclined to run away to NZ as you look so handsome. Is that the dog with ‘dogability’? Trixie? I’d definitely say that dog knows it’s own mind judging by the look on his face. Lovely pic. I’ve got a kitten-cat with plenty of ‘cattitude’ who likes to go frogging in next doors pond. Do you know, that if you have four frogs in your house it’s very difficult to catch them? Well, it is.
Ben, do come back and tell us how you’re doing. I’m keeping my fingers crossed and hoping against hope that all will be well. Hugs to you and Sharon.
Love Crystal xx
Hi to everyone – hope all is well with you and today is sunny where you are xx

FormerMember over 15 years ago

Hi Netty,

I am so glad you are getting your life back on track, I fully understand how you feel, but you will get days when you think you are going backwards, this is normal, and as time goes on these days will get less. Enjoy your well earned holiday, but please don’t overdo it, drink plenty of water on the plane as the cabin pressure can make you dehydrated.

Hi Crystal,

I hope you are taking good care of yourself and managing to keep your energy levels up, are you thinking about taking a holiday yourself? I thought we were going to have a good summer this year, what a ruddy wash out.

Hi Ben,

We haven’t spoken before, I am sorry you are having problems at this time, you have a good outlook on life, my friends dad had kidney cancer 20 years ago and his motto was if you think fit you will be fit and is still around today, saying that it is sometimes hard to be strong all the time especially when you are suffering with pain, but we all sometimes have days like that. You live in a nice part of the world, only ever passed through on my way to LA after visiting my mother in Australia, always wanted to have a proper visit, and just may get around to it one day.

I wish you well with your ongoing investigations.

Nothing much to report from my end except that I am waiting to see the consultant about my plumbing which is still playing me up. The good news is we are off to Center Parks in Cambria for a week, taking the cycles with us so to get a little gentle exercise will be a good thing, what I like about self catering is I can eat what I want when I want which takes the stress of finding things I can keep down. I went out to give the car a full service before we go; it is a good job I did because I noticed the drive belt and engine mount would not have held up to the journey. Fingers crossed the new engine mounting is delivered tomorrow so I can fit it and then we can be on our way. I can’t wait to get there as it’s the first time away since my diagnosis.

To everyone else looking in, I hope life is giving you a fair to good time.

FormerMember over 15 years ago

Hi Crystal,
Flatttery will get you everywhere but not sure if it will include NZ! Still havn't got my appointment in spite of 8 phone calls and a personal appearance (I am not known for my reticence!) problem is the huge backlog and earlier loss of me in the "system" So hopefully tomorrows mail will be productive. As you will be well aware the waiting is worse than the result. Meantime we are carrying on enjoying the lovely pre- autumn weather and nice sunny days.
If you look carefully at the photo you will see our cat (tabby fatty plumptious) Tabatha, laying about as usual but she was cut off in the upload. Trixi and Tabatha grew up together on our farm in Lawrence for 7 yrs but are now established "townies" almost impossible to get a photo without one or both of them getting in on the act. We are about to take off for lunch at Port Chalmers at a restaurant called the "tall poppy" as it is purported to have been an opium den in the old sailing ship days - a bit before my time!

Hi Bad Year,
Nice to hear from you -- perhaps you should change your pseudonym? if we are still here it's got to be a good year - some years are just a little better than others - just a few more new engine mounts and a rebore and we'll all be good for another few years. If you ever get down our way let us know and we'll put the kettle on or make sure there is a cold one in the fridge.

Keep those cards and letters flowing folks.
All the best .
Ben

FormerMember over 15 years ago

Ben

I think you are right, a bad year should become a good year.

Steve

crystalclear over 15 years ago

Hi Ben
It’s totally unthinkable that the medics are keeping you waiting like this, and it’s all down to their own administrative errors and mismanagement of their ‘system’. In the meantime you have the added stress of chasing them up as well as worrying about the results. It makes me angry on your behalf! It’s a good job you have a lovely disposition and are still able to go out and enjoy everything about your day. By the time you read this message I’m sincerely hoping that you’ve had good news from them.
Yes, I can see Tabatha there in your photo, and is that your national NZ flag flying from your rooftop? Hope you had a good trip to the Tall Poppy restaurant, maybe trip isn’t the right word in this case Lol. How’s your diet and eating these days?
One more thing, I fully agree with you, and have often thought so myself, that Bad Year should change his name to something a little more positive. I don’t even like writing that word Lol. Take good care Ben and let us know how you get on. Xx

Hi Bad Year
Maybe you could call yourself Not Such a BadYear. Or maybe Quite a Good Year Really Lol, or something else, with Bad Year in brackets until we all get used to your new name? Anyway, I hope you have a lovely holiday and the weather picks up for you. It will do you good to be in the countryside riding bikes, it’s something I love to do too. Have fun.

Hi to everyone looking in, hope your day is a good one.
Love Crystal xx

FormerMember over 15 years ago

Gidday Crystal,

The lunch was lovely thanks - freshly caught snapper in beer batter with delicious salad and crisp fries,so that answers the question on diet -- I can eat just about anything but little and often and some of it doesn't stay around too long so the weight is still at the 60kg mark
I must have been drifting when I said we are enjoying pre autumn weather -- what I meant was pre SPRING! we even have a daffodil in bloom.

Yes that is our national flag flying from our balcony. Still has the union jack in the corner to remind us of our colonial beginnings.
Thanks for your comments on the delays in the system makes me mad too, but I try not to waste too much time getting mad at anything these days - it only uses up energy which I don't have a huge supply of. But it does make you wonder if those responsible have ever had to go through the agonising waiting time themselves. The most understanding staff in my experience are those in the chemo and oncology areas - they seem to have more empathy than the specialists.
Anyway it's time to turn in after another wonderful day.

Hi there good year,

Looks like I started something - sorry about that, but I couldn't help myself! Considering the relatively short time since your surgery you are going great guns. Goodyear sounds great to me (with racing slicks by the sounds of things) Trust the car got sorted OK.
Cheers Ben

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