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 you must be shattered poor thing. I hope you’ll manage to sleep better now John’s in full recovery mode. This might be the most uncomfortable time for John (it was for me) as he will now be without the epidural and relying on regular painkillers. It’s bearable but painful. Soon he’ll be having all those staples taken out and tell him that it does not hurt at all inspite of what it looks like, all he’ll feel is a slight plucking which even tickles.

He also needs to walk and move around as much as possible – this takes a really huge effort but is good both physically and psychologically. The nurses dragged me out of bed and dumped me in the shower each day LOL. It was wonderful to sit in that shower. Also, from my personal view, since my immune system was weak from the chemo and the surgery, I took especial care with personal hygiene whilst in the main ward, constantly using the hand gel and my husband always used the spray dettol to clean things around me LOL. I mention it because you can’t be too careful.

John and you are doing really well and I’m so pleased for you. Keep in touch as we’re all thinking about you.

Love Crystal xx

FormerMember over 16 years ago

Hi Crystal
John was so much better yesterday and now can use his mobile on the ward so that is a huge relief for me as i know he can call me now if he needs me. His pain is now controlled although still hurting when he coughs which is understandable. He is taking tramadol pain relief which seems to be keeping the pain at bay. He was drinking all day yesterday and taking fortisip and even had a cup of tea bless him. The stitches are coming out today and the cathater was being removed last night so things are coming along nicely. He has asked for the stitches as he has some of his hickman line and his pump bag from the 5FU (weird i know but he wants souveniers which we can destroy in our own time). John asked me how i was coping yesterday and i told him ppl had been very supportive around me and i told him how i was posting on here and told him all about everyones responses and kind words. He has asked me to convey his sincere thanks to you all and although can just about turn a pc on will post something when he is home! Today they are going to try him with some soup and ice cream, tomorrow some toast, Monday, if all goes to plan will have some solid and then they are looking at letting him come home-Hurray!!! i know there can be some problems when he starts eating so am not building my hopes too high as i would rather him be in hospital until it is the right time for him to come home although i'm missing him terribly. We are watching the hygiene like a hawk, using the hand gel in the hospital and have also have some by his bed. This will be the test when he comes home and i can sort his diet out as i so want to get it right, his nurse said he will only be eating from a saucer as his meals will be very small, it's just knowing what to do inbetween meals. I thought like crackers and cheese spread, quavers, wotsits etc, a banana which is split down the centre with ice cream, garlic bread (which he loves but not sure how he will tolerate the garlic). He loves mullerice puddings but I have heard dairy products can cause problems. oh so much to adjust to! will be asking his surgeon next time i see him when we will have the conclusive results from the tumor (i hate that word now as much as the "C" word) We have come so far in a week and i'm so very proud of him. I'll keep you posted, I would really appreciate some diatary advice if it's no trouble to you, thanks. I hope you are well and things are just great with yourself. Take care
Love and Hugs
Sal
xxxxxxx

crystalclear over 16 years ago

Hi Sal, It’s great to hear that John is doing so very well. Tell him I can’t wait for his first post here, that will be wonderful.

As soon as he can eat solids he’ll probably be allowed home a few days afterwards. At first, the diet will be a bit tricky as John may well find that certain things he liked will make him ill and other things are either too rich or too salty. I could only deal with the most bland and banal food, (where I loved spicy, salty and dairy before, these made me very poorly). Once he’s settled at home I’ll p/m you and give you some general tips that may help and what to expect along the way. Hopefully though, he’ll do ok where diet is concerned.

Keep posting and let us know when John gets home.

Love to you both – Crystal xx

FormerMember over 16 years ago

Hello Sal.
I would like to pass on my best wishes to you and John, you have both been through so much and now, hopefully coming out the other side. You mentioned one thing in your last post which I felt I needed to elaborate on. You said that John was saving the stitches from his Hickman line, and his throat Op, in order to be able to destroy them at a later date. Its not as daft as you think....I too did this, and found it a great help psychologically. It was when I had finished treatment for Breast Cancer. One Guy Fawkes Night, the children made a Guy for the Bonfire....They dressed it in some old clothes and on its head we put one of my old headscarfs and my wig......THEN....WATCHED IT BURN. It sounds a bit pagen, but it was so wonderful for me....like closing a chapter of my life which I could have well done without. Putting it all behind me, and starting afresh.
I mention this because it is very good for the healing process, and I hope that others can do something similar, and get just as much relief from it as I did.

You and John are in my prayers.
Christine xx

FormerMember over 16 years ago

Hi Everyone

John doing fine again, everything removed now (tubes etc) and managed to eat some icecream yesterday and it stayed down, is currently on a diet of sweet things which will alter as the days go on. I'm starting to get things ready for his homecoming which is helping me immensley, have got the yellow ribbons all prepared!
Christine- Great minds think alike, John doesn't have the hickman line stitches, he has the end of the tube from that and the bag that his 5FU pump was in, he is asking for the staples from this operation (they should of been removed yesterday but werent) and yes, we intend to have a quiet time when we can set fire to them when we hopefully get the all clear from this, although i know there is never an all clear with cancer.
I cannot believe i have been going through the same thing after losing my last husband with bowel cancer only 8 years ago and here i am again fighting this awful disease with John but i suppose these things are sent to try us and try us they do.
I look forward to your tips Crystal, you have been great especially in starting this thread, it gives hope to so many on here.
Speak to you all soon
Love and best wishes
Sal
xxx

FormerMember over 16 years ago

John returned home yesterday a day earlier than first expected. He is doing well, not really snacking much in between meals but is having fortijuices. First slight hick up at tea time when he ate more than he should but soon settled. Specialist nurse from the hospital is calling daily to ensure no problems which is a great support. I feel great now he is home and taking each day as it comes, am hopefully returning to work on Monday, i only work opposite our house, my office overlooks our back garden so am on hand if needed, the sooner we try and get back to normal the better. We are seeing the consultant in 4 weeks time to discuss what happens next and have decided to wait until then to find out the results from the removed tumour, don't want to spend the next few weeks worrying about it, just want to start and rebuild our lives and enjoy the next few weeks. Although new to this operation i hope i too can be of some help to others who are going through the same or about to start this journey. I hope you are all doing okay
Love and hugs
Sal
xxxxxxx

crystalclear over 16 years ago

Hi Sally & John - I write to both of you as I'm sure John will be reading this too now he's at home. I think you've done fantastically well and I'm absolutely over the moon that all has gone so well for you. I pray that you recovery will continue in such a way and that one day John you'll feel fit enough to say Hi to us here. For now, just do what Sally tells you (not that you'd dream of doing otherwise ROFL), as she is a very good nurse and knows what's best for you.

I agree with you Sally, it's best to get back to normal as soon as possible and go back to work. The district nurse will pop in and John will be fine anway. If he's anything like me John will sleep for hours on end.

I think Sally that you've already been a great help with regards to helping people just by posting here. I know a few people in this situation and facing surgery who have been reading your journey here with interest and hope for you and for themselves. And of course, it would be great if you could help further.

Hugs and kisses to both of you. Take care.

This next week we've got guests from overseas but after that Sal I'll send you a message.
Love Crystal xx

FormerMember over 16 years ago

Hi Sally, really pleased that John is doing well and he is home.
He will probably sleep loads to start with but use this time to catch up on your sleep! I was exhausted when Kev came home, think all the stress etc finally catches up with you. Kev has now been home three weeks and is slowly getting stronger. Im going back to work next week and I know exactly what you mean when you say about 'getting back to normal'.
Take care both and remember to take it one day at a time
Jo xx

FormerMember over 16 years ago

Hi Jo
Thanks for your kind wishes, yes John is doing quite well at the moment, better than i first thought, have had a few teething problems with his meals as he tends to eat more at mealtime then he should although has done better today. I have noticed from your profile that Kev had his operation in July and has only been home for 3 weeks so i am assuming there had been prolems, i hope not and i hope he too is well on the mend now. We will know in 4 weeks time if the cancer has gone so am pushing that to the back of my head and just enjoying this recovery time, the only concern i have is that he has been told he may still suffer from reflux and after suffering barretts oesopheagous for 5 years i do not want this to again turn into another tumour so will be doing some research.
It would be lovely to keep in touch with you as we are in the same boat and if i can be of any support to you please ask me
Love and hugs
Sal
xxxx

FormerMember over 16 years ago

I've read this thread this evening and been touched by people's stories.

My partner Frank has oesophageal cancer, having had Barrett's oesophagus for some years. He went for a gastroscopy in August and they discovered it then. I started a thread in the 'Just Chat' part of the forums shortly after his diagnosis.

After tests and scans, he is now going to have surgery next Tuesday in Rochdale. And he is getting nervous and a bit scared about it and what he will be like afterwards. Luckily we have lots of family and friends around us to support us through this time.

Michael

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