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

crystalclear over 16 years ago

Hi Sal - I can imagine how you are feeling waiting for the results. Just try to take a step at a time and know that I'll be thinking of you on Tuesday. Write to me soon.
Good luck
Love - Crystal xx

FormerMember over 16 years ago

Results are great, tumor is small and contained although lymph nodes are affected, no spread to vital organs so operation booked for 18th sept, they are hoping bloods will be back to normal by then, we meet with the team next week to discuss the operation so it's now all steam ahead, how do i feel? relieved, anxious, wary, all emotions but so thankful we have been lucky then many on here, thanks so much to you all for your kind wishes, i really do appreciate all your support, hope you are all well

Sal

xxxx

crystalclear over 16 years ago

Hi Sally - that is such good news and I'm relieved that he can go ahead with the operation. You will be full of mixed emotions but the main thing is that the surgeons are prepared to operate. Just follow the consultant's advice in preperation for the surgery and if possible I hope that John can get himself as fit as possible.

Such good news Sal - a (((((big hug)))))

Love Crystal xx

FormerMember over 16 years ago

Good news Sal,

He needs to do a bit of exercise - just enough to keep his heart and lungs going, not too much though. Tell him not to change his diet dramatically either and try and keep away from crowded places where he's likely to get a cold. If he does, they will put the op back by a month at least. That's because the lining of the lungs become hypersensitive after a cold and the anaesthetic irritates them even more.

If the Hospital doesn't offer, ask for a visit to the HDU where he will go post op for a couple of days. It is a bit intimidating when you see it at first but if you know what to expect it's not too bad.

Good luck,
Thinking of you
Mick
xx

FormerMember over 16 years ago

Hi Sally
Just reading through your threads, my husband is 59 and was diagnosed with cancer of the oesophagus last August, went through all the tests, chemo etc and underwent the op at the end of January. Was in hospital for 14 days 7 of which was in intensive care and high dependancy unit, as part of the op they removed all the lymphs and thankfully the tests that they carried out showed that none were infected although no 100% guarentees it was the best news that we could of hoped for and now 6 months down the line he is back working full time and we have just spent 3 weeks touring france with our caravan, looking back to this time last year I never thought it possible, I know how difficult it is to try to keep positive for the sake of your partner and be so scared and anxious at the same time, having been told the op is possible is a step nearer
to getting through this terrible time.

best wishes

Anne x

crystalclear over 16 years ago

Hi Mave - I'm so glad that you posted such an optimistic piece of news here as it gives so much encouragement to many people. It's wonderful that your husband is doing so well and has made such a fantastic recovery, and just goes to show that there is always hope and certainly good outcomes sometimes.

I too was able to tour Italy this year in May, just one year after the surgery and whilst it was fairly tiring it empowered me and gave me an inner strengh.

I hope all the people who read your post take heart and I thank you so much for sharing this with us.

Very best wishes to you and your husband - Crystal xx

FormerMember over 16 years ago

Hi Crystal
Fantastic to hear that you have also gone through it all, came out the other side and getting your life back, so many sad stories with this illness, just nice to hear some positive outcomes, it certainly helps when you are going through this awful journey....gives you hope

Take care Anne xx

FormerMember over 16 years ago

It's been such a busy week and even more to come this hence me not responding so i appologise. Words cannot express how much encouragement and hope you have all given to me. John seen the surgeon once again last week who confirmed the scan results were good although not conclusive until they do the surgery (more anxiety!) the lymph nodes are swollen but not sure if cancerous until they operate as apparently they swell if you just have a cold. He intends to remove almost all of the oesophagus as the barretts is quite severve and went through the general aftercare and diet. We are to meet with the aneathatist on Wednesday and the team again on Thursday for pre operative tests. John is to go in hospital on the 16th of this month and be operated on the 18th. Anne-thanks so much for responding, i hope your husband is doing well, it really helps to hear of such positive stories from this awful disease. Mick-God bless you, I take on board crowded places as we are going to our caravan in Wales next weekend just the two of us for some quality time. Crystal-you have been a star, thank you to such a wonderul lady. We will know the outcome from the operation 2 weeks after surgery, i was hoping for this wthin a few days but never mind i know i will be kept busy. If i can i would like to ask about food becoming lodged, this has happened 3 tmes so far it's not so much difficulty swallowing but the fact food lodges in the throat or so it seems, we were out having a meal last night and johns food became stuck, he was in great dificulty choking and heaving at the dining area, for 20 minutes the food was stuck, his eyes were streaming and although he assured me there was no pain or difficulty breathing it was an awful experience to watch, we left the meal and come home john was still struggling refusing to go to the hospital but managed to release it when he was sick. I wondered if any of you had experienced this? Hopefully this will end when he has surgery although the surgeon said it is possible to still suffer for a time but will disappear. How awful is this condition, having lost my last husband to bowel cancer it was mainly pain he was in not this terrible discomfort. Anyway i will definantly post this week and i so hope i can get on line once he is in hospital to let you know how he is doing, my love and sincere thanks to you all. God bless
Sal
xxxxxx

crystalclear over 16 years ago

Hi Sal – I’m so happy that John responded well to chemo and I admire you too Sal for being a strong lady and supporting John in the way you are doing. From watching my own husband support me, although he acted with supreme confidence and quiet grace, I could see the fear and pain my illness was causing him., so I can appreciate how it is for you.

For myself, the chemo didn’t shrink the tumour very much, just enough to allow me to eat again and very often the food lodged in the gullet. Sometimes it would stick there for some time causing extreme pain and discomfort until I could make myself sick to dislodge it. After the surgery this eased a lot, but there was still some sticking as the scar tissue thickens during the healing process. This eventually gets better until things get back to ‘normal’.

Have a lovely time at your caravan in Wales, I’m sure the lovely scenery will lift your spirits and make you feel good.

I’ll be thinking of you both on the 16^th and more especially on the 18^th. If it’s any comfort, just know that for this operation John will have the most experienced surgeon and anaesthetist and his after care will be first class. Keep us informed because we think of you and want to cheer John on to full recovery.

I send you a big hug Sal (((((Hug)))))

Love Crystal xx

FormerMember over 16 years ago

Hi Sally

They never said anything to Ted before his op about the tumour shrinking after the chemo, it did as even after the first session he was able to eat better
he was on the trail chemo ECX he had 12 weeks of 4 lots of overnight stays at the hospital with the drip and then tablets twice a day for the whole period although he did have to stop and start the tablets a couple of times before the end of the treatment, however, when the consultant came to see him the day after the op, I asked how big the tumour was and he said that it was virtually gone, it just looked like it had burnt away, they had said before they started the chemo that they were concerned about its size so I think it was origionally quite large.

My thoughts will be with you especially on the 18th, I know its hard but try to keep positive, like Chrystal said the surgeons are very skilled and experienced at doing this kind of op he will be in good hands. Try and relax next weekend.

we are all behind you both

love Anne xx

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