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Oesophageal & Gastric Cancer

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Gastric-Oesophageal Cancer T3-N1-M0-R0. Ivor Lewis Gastric-Oesophagectomy with unplanned Splenectomy.

Mindcrazedbanjo profile image
9 Replies

Hi everyone my name is Peter (59yrs) (Vegetarian) and in March 2016 I was told I had Oesopagheal cancer and that the tumour was 11cm, one of the bigger ones they said they have seen. Of course at that point my whole world collapsed, I already have a 26 year old son who has been on Oxygen for 23 years and needs a double Lung and Heart transplant and now this! They told me the hoops I had to jump through before they would decide whether they were going to operate or not, ie, Pet scan, Endoscopy with ultra-sound, MRI scan and finally the Laparoscopy. I mistakenly thought that time was of the essence when Cancer had been detected but nothing could have be further from the truth, The Four staging tests I mentioned seemed to take for ever, also at the time the NHS staff were going on strike, and I just had this feeling that this thing was getting bigger and that they were giving it a good chance to spread.

The plan was Nine weeks of Chemo ECX, thats One day introveinous Chemo at the Hospital from 8am to 5pm, (if there are no complications). Then Three weeks of taking tablets and then start the same all over again. Then a break of a few weeks, then the big 9 hour operation. Then a break, then back to the same Chemo regime as before.

Five days after the Laparoscopy I had a bleed and vomited about Two pints of blood up, my wife phoned 999 and I was rushed to hospital, given a blood transfusion and then they were contemplating performing an unplanned emergency Oesophagectomy,

luckily for me they phoned my consultant surgeon and he said he wanted me back at his hospital. In order to stop me from having another major bleed they decided to use Radiotherapy to shrink the blood vessels in the tumour and stop it bleeding. This seemed to do the job although I was still really worried and cautious about eating leading up to the operation. After the operation I woke up in recovery and I had only been awake about a minute when a member of the theatre staff appeared from behind and said "the operation went ok but the surgeon slipped with his knife cut into my Spleen, he could not stop the bleeding so removed my Spleen but thats alright" then quickly went away before I could ask anything. Within Five minutes the surgeon came and basically told me the same thing amd assured me I could carry on alright without a Spleen. They had me out of hospital in Nine days with a feeding tube in my gut, I wasn't a weighty person (11 stone) to begin with and lost so much weight I went down to 9 stone. When I started the second course of Chemo my body couldn't handle it, I went in at 8am and didn't come out for a week, I was Anorexic and had Sepsis as well as numerous other problems which are too many to list here. While I was in hospital the Oncologist turned up and said he would reduce the Chemo dose, I told him thats it, I'm not taking Chemo anymore, a decision which I really believed saved my life, if I kept on with the Chemo I don't think I would be here now, I was just too weak.

I had my Ivor Lewis Op on 7/7/2016, my Daughters 21st Birthday. I had my feeding tube out in Jan 2017 which was a great day cos I'd learned to hate that thing. Its getting on for 15 months now and I'm just starting to really get to grips with food/myweight/cooking/frequency of meals, its a steep learning curve and a big change to make in a short ime when you are not feeling very well. I still have pain although its subsided a lot to what it was like. The mornings are still hit & miss, sometimes after breakfast I feel fine, others I feel nauseous for about an hour and an half.

I hope my story helps instill hope into anyone going through the same, I remember too clearly how down I felt, in some ways the mental anguish is worse than the pain. The only medication I take now are Lansoprazole in the morning and anti-biotic twice a day for life cos they took my Spleen out.

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9 Replies
Jennyretro profile image
Jennyretro

Hi Peter, thank you for sharing your story and sorry to hear that you had a rough time. Good news that you are getting to grip with everything now. I have surgery this coming Friday and will have a complete gastrectomy, I am so scared but hearing how strong people are is giving me hope.

Jennifer x

Mindcrazedbanjo profile image
Mindcrazedbanjo in reply toJennyretro

Best of luck Jenny stay strong and take every day at a time and you'll get there in the end, a Thousand mile journey starts with one step.

Hope1972 profile image
Hope1972

Thanks for your story Peter and thanks for your advise, im glad there is light at the end of the tunnel.

I agree its a long recovery and dont we know it , everything you have gone through with weight ect is similar to my dad.

Well we will see what today brings with dad app , i dont think my dad is well enough to take post op chemo.

It has been a long and bleak journey for you, but it does go to show how resilient our bodies can be and how one gradually heals. Also the judgement and skill of the surgeons in reacting to unexpected situations and accidents. Sometimes the chemo regime does not last as long as planned but that does not always seem to make much difference.

So glad that you are now making such good progress. You are quite right about the mental side of things being a challenge.

Mindcrazedbanjo profile image
Mindcrazedbanjo in reply to

Thank you Alan.

prissymissy profile image
prissymissy

Hi there,

I hope you are feeling much better now and that you will continue to improve. My spleen was also damaged but he did nor remove it, but now I am on antibiotics for life. It does get better, I had my operation 3 years ago, the cancer returned to another place after 12 months, but I had chemo and everything is OK now. I get a bit tired in the afternoons, so I just go for a little sleep, and that sets me up, then for the rest of the day. Don't try and do too much, listen to what your body tells, you. You will be fine, best wishes

Prissymissy

Mindcrazedbanjo profile image
Mindcrazedbanjo in reply toprissymissy

Thank you Prissymissy for replying that was interesting to know.

Funny thing is, after reading on this website I've suddenly discovered that there are people out there who have had Splenectomy's but their doctor hasn't put them on Anti-biotics for the rest of their life like mine has with me. They seem to treat people differently.

prissymissy profile image
prissymissy

It would appear they do treat people differently, Maybe its all just a postcode lottery. I hope you are feeling much better

Lynsey2601 profile image
Lynsey2601

Hi peter

Thanks for your story- you clearly had a rough time of it but so glad to hear that you are doing well!

The testing and staging is so frustrating, when my dad got the diagnosis all we wanted was for someone to act right then and there!!! He underwent the IL op and it even got pushed back 3 weeks as someone who was ‘more of an emergency’ could have the slot! At first I was angry however on reflection we were lucky that Dads cancer was not advanced the the window of opportunity for the other person having the operation was swiftly closing...........

The nhs staff were amazing- they still are in touch and doing follow up, Dad felt the same way you did about the feeding tube but thankfully his is out now too!

It is such a life changing op and some days it’s still a struggle with eating and the dumping syndrome- some days are better than others! Thanks for sharing- hope you are keeping well and take care of yourself

Lynsey x

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