Told today

I have been on a feeding tube since end may.   I have to be honest it is a boring long winded affair getting feed into the stomach.   Depending on the calorie requirement, mine is set on 2100 per day it can take up to 10 hours.      However since chemo has started my tumour has shrunk enough for the dietitians to change my feeding regime and have high energy flavoured drinks via mouth and feeding via NG TUBE reduced to about 5 hours daily.

       My feeding tube is a NG LINE which runs via the nasal channel down onto the stomach,. It may be your husband is being fitted with  PEG tube which is much easier to manage as it goes directly through the abdomen wall into the stomach .

Hi Sully69,

My husband was diagnosed 29th Dec last year with stage 4 oesophageal cancer. The tumour is 6cms. CT scan showed it had spread to diaphragm. Then he had a PET scan and thats wen we got the bombshell that it had also spread to his stomach, liver, both lungs, top and bottom of the trachea and his lymph nodes. He was started on Oxiplatin and had 5 sessions but it did nothing for him, but it has wirked for others that we have met. He's now on Paclitaxel and is due to hav a break from it for a month after his 18th session on 23rd Dec. He has done well to cope with the chemo, biggest problem for him has been the total fatigue, loss of appetite which causes terrible weakness. His prognosis was 6-12 months, but he’s doing well considering. We have met many people who hav had stents put in to help with swallowing, others that hav had the tumour removed and the oesophagus rejoined. It depends wher it is. My hubby isn't able to hav an op. We eat sloppy food, hav nutritional drinks or eat little and often. Wives hav to b the positivity to keep hubby’s going. Oncologists r fantastic and will make sure yor husband gets the best treatment going. Never giv up. Try and stay strong, no matter how hard it gets. Let the tears flow, preferably wen u r on yor own so yor hubby isn't worrying about u. We r the tower of strength that our men need. Its scary but u can’t let it get to u. I truly hope he’s got some help by now.  Good luck to u both.

Hi big nana 

got to admit it’s been a very hard few weeks he’s had trouble with the stent since day one and numerous chest infections (3) and hospital stays he doesn’t seem to be gelling with his oncologist at the min he wants the peg feed to be able to keep getting some nutrients and he needs to have an extension to the stent to stop things going into his lungs but his oncologist is deciding things very slowly and we are very aware of what time he’s got left. He starts his 3rd round of chemo Monday I’m hoping his tumour shrinks even just a bit to make him more comfortable like ur husbands prognosis we was told 6-12 months and we are on our 4 th month so hoping for some relief some way down the line. Like urself I’m trying to be really positive and not break down in front of him but god it’s hard and then if Ive had a bit of a cry I feel selfish as he’s the one that’s dying so I need to put the game face back on if u know wat I mean. I’m hoping u and ur husband have some positive news and ty for ur kind words xxx

Hi Sully 69, sorry to hear about your husband. I'm just past 5 years since I had surgery for oesophageal cancer. I was told that I had a 20-25% chance of surviving up to 5 years. I decided not to look at it as a suspended death sentence and just to keep living. We are fortunate enough to have paid off the mortgage and had no big debts, so I didn't have to start working again ( Self employed). Unfortunately I have 4 tumours in my lymph nodes and I am now on palliative care. I feel it's my wife and son who have the hardest time seeing my decline, I have come to terms with the situation now. As big nana said have a bloody good cry to yourself when you need to and do not feel guilty. You women are much stronger than you have ever been given credit for and it's not a weakness to have emotions. I hope you and your husband get some relief. Kind regards Frank