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

Richard,

I'm sorry, I just realised I hadn't replied to your email. Hope you are well.

Mick

crystalclear over 15 years ago

Hi Richard
Welcome to the ‘Survivor’s bus’ as Mick calls it Lol. I’ve just read your blog and couldn’t agree more that life without a stomach does have its drawbacks, particularly relating to diet and weight issues. We all recover at different rates, for example Mick can eat almost anything, Ben struggles with weight and I still have dumping syndrome. One of the strangest feelings I’ve still yet to deal with is the sudden fullness I feel when eating. There is no warning that this is about to happen and suddenly, one more bite and I’m absolutely over-full. I’ve tried evaluating size of meals, but that doesn’t seem to work. Another strange effect is that I never experience hunger pains either, not once. One day, I’m fairly positive that we can stabilise our metabolism and lead a better and healthier way of life. You’re welcome to post any comments or views you have, as it will all add to our learning curve.
Crystal xx

FormerMember over 15 years ago

Hi everyone

How is everyone? Nick is still progressing slowly but of late has been very low on energy. He has been to see a 'sports injury' phisio ... no he hasn't taken up hang gliding or anything like that lol. but pulled a muscle in his back getting out of the car!!! He found it difficult to lay on his stomach for the physio (scar still painful) but they managed to manipulate with him sitting up leaning forward. On the second night he reconed that a thai 'bird' paddling up his back might help ... I offered but he declined even though i siad i'd dress the part ROFLMAO.
Snow is settling well Crystal but decided to run up to someone with a stick (walking variety) that he thought might play. The lady lost her balance and fractured her hip so I ended up taking Nick and Snow home then went to the A&E to be with the lady until they could contact her son. Daughter June also had a car accident (car damaged but she was only shaken up). Nick did his back in. So if things go in threes thats it!
I'm still busy at school (its just that time of year) but managing to keep an eye on Nick and the business.
Good to hear that you are progressing well Ben ... must be the climate down there.
Hi Netty you appear to be doing well since your op. Good luck and we hope it continues to improve.
Well must get the 'hound' out walkies.

Keep smiling ... less wrinkles than frowning

Jane & Nick xx

FormerMember over 15 years ago

Hi Nick and Jane,
Suggest you perhaps exercise in the back yard from now on! Nick sounds like he is almost up and racing. I found Physio advice very helpful even though I haven't been able to get to the gym as often as I would like due to other little interventions but the exercises gave me a lot more confidence in my capabilities and I enjoyed the competitive feel of the circuits although they kept saying it's not a competition.

I've had a quick emergency overnighter in hospital with violent stomach spasms which have been niggling away for a week or two. So a barium swallow followed by a ct scan to come in the next few weeks. Another (repeat) adventure!!
Took my dog Trixi down to Allans Beach today - it was a glorious and we had the 5km beach to ourselves - how good is that! Couldn't find anyone's hip to break. Trixi had to be happy just chasing a ball in the surf.
Keep up the great recovery.
Ben.

crystalclear over 15 years ago

Hi Jane & Nick
Well let’s hope that is the end of those mishaps. I hope Nick’s shoulder is better and that his energy levels are back up. It’s quite normal to feel tired for a long time; I used to find myself dozing in my favourite bookshop in town. They have these very comfy sofas where you can curl up with a good book, so I did literally. xx

Ben my friend, now I’m worried about you, although with your constitution I’m sure there’s nothing to worry about, as it’s probably all part of the mending process. Still, best to get it checked out now to put your mind at rest. I used to get bad stomach cramps every now and then for no apparent reason, but my consultant said it was to be expected, but if I felt it needed attention he’d run some tests. I hope by the time you get this message that the stomach pains will have stopped. xx

Woody, it’s so good to know you’re doing well. Take care and hope to hear from you soon. xx

Netty, you’re doing great, coming along in leaps and bounds. xx

Mick, big hugs to you. xx

I’m fine. Just spent the entire weekend watching films on account of the bad weather!

Anyone else looking in I hope your day is good.
Love Crystal xx

FormerMember over 15 years ago

Hi everybody,
Hi Crystal-U R in my thoughts
Hi Ben-How you feeling down under?
Hi Netty Hope you are feeling ok
Hi Richard,
i have managed to escape the hospital and catch up on all the newest news from this excellent tag., i have tried to eat where ever possible all organic fresh foods,breads and stew packs,containing wonderful pulses also having lots of small packets of protein in the form of fish at least 4 days of the week.drinking only filtered water or bottled water,i dont know if it has made any difference from any one else ,but i feel my body doesnt have to contend with processed foods as well as all the other stuff and it tastes wonderful...tata for now Woody

crystalclear over 15 years ago

Hi Woody
Considering your surgery was exceptionally radical I can’t help but admire your bouncing back to recovery so well and so quickly. I think your natural, organic diet is the key to such a healthy recovery and I believe you are right in that processed foods make our body sluggish (and I think may be the reason for my dumping syndrome). I do tend to eat organic where possible, although I’m aware that there isn’t any exact scientific proof that it is more healthy than other food. A positve mental attitude I believe is also key to a feeling of well being and therefore a good recovery. Personally, I think you are a star and an inspiration to anyone. xx

Hi to Everyone
I hope all is well and that each day you find yourself gaining strength and seeing noticeable improvements. Good luck Ben for those upcoming tests, I’m keeping fingers crossed that all will be well.

Hope you all have a good and sunny day.
Love Crystal xx

FormerMember over 15 years ago

Hi woody,

My husband had a radical ivor lewis 4 years ago and after about 6 months he could virtually eat anything and boy does he love to eat! If anyone was going to find a way to eat a whole packet of biscuits it will be him! Tips I thought you might find useful from my other half - eat lots of fish or seafood (if you like it) as this is quickly digested so tends not to give you the dumping or sore stomach as it passes through. Avoid pineapple, mango, pastry, sausage rolls, etc as these are slow to digest and can cause pain when sitting in your stomach for a while. He also has to avoid really spicy foods and so misses his curries but compromises and has a mild curry now if he has that notion. Egg can also be funny and lentil soup as I think lentils and other broth type soups can again take a while to digest. If we were eating out and hubby wanted to join in he would pick the smallest starter then have a fishy main course and then something like ice cream to follow. This means he will still have room left for all his tablets etc. If you are taking a lot of tablets and struggling with space for them then another tip is to take them with some kind of antacid such as gaviscon (although obviously check with gp beforehand). He finds this helps when he has a lot of tablets to take at certain times of the day.

My husband also avoids eating after 9pm and sleeps with a v shape pillow to keep him semi upright to avoid acid coming back up during the night.

X

FormerMember over 15 years ago

Hi everyone,

Not had a good day today. Nick had results of blood tests etc. and the prognosis doesn't look good. He is straight in to hospital to have x-rays etc. as they now think he has a tumour on his gall bladder. Does this bloody disease ever give you a break?

Jane & Nick

crystalclear over 15 years ago

Hi Jane and Nick
If there is one thing that I can say with this cancer, and many have seen it for themselves already, is that nothing is for certain and nothing is set in stone. I hope with all my heart that the results are benign and that it’s nothing at all to worry about. You’ll be in my thoughts and if you’d like to send me a private message please do.
Love Crystal xx

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