Partners recent diagnosis

  • 7 replies
  • 67 subscribers
  • 528 views

I have been ‘lurking’ around on this page for a few weeks, reading all posts and advice. 

Unfortunately my partner Robert aged 55 was diagnosed with this disease on 11 October. He has had CT scans and a PET scan and a laparoscopy and ‘wash’ of his abdomen. He has an oesophageal tumour, evidence in one lymph node and some cancer cells in his abdomen. He will begin chemo FLOT on 14 December. They have said that he is not suitable for an operation but that may change after the chemo. The plan is 4 rounds of chemo in the hope that the tumour will shrink. If it shrinks, they will then be able to operate to remove the tumour. If it doesn’t shrink, it will be Palliative chemo from then. We met with the oncologist on Tuesday who told us that his case is quite unusual as normally the cancer would have spread but in his case it hasn’t. That’s hopeful.

He has a Nasogastric tube for feeding and is really struggling with getting the hang of it. He was so very sick last week that the tube came out. He had it out for a few days as he thought he’d be able to eat liquidised food. That didn’t work as everything made him vomit. He had the tube refitted yesterday and it failed last night as it blocked. He’s becoming so defeated around this tube it’s a real worry. The specialist nurse came out today and pulled the tube up a few centimetres which allowed the liquids to pass.

The real problem that he’s finding hard is the constant throwing up of ‘foamy spit’. (apologies for the detail). He’s doing that several times a day and during the night I wake him up because he’s gurgling in his sleep because his mouth fills up. He has Omeprazole 40mg twice a day and paracetamol in liquid form. He also has Oramorph for breakthrough pain. Nothing seems to be working. I’m also encouraging him to sleep on elevated pillows but nothing seems to work.

Apologies for the rambling explanation but any help or advice would be appreciated. I’m always on top of my game, organising everything, dealing with our lives, sorting things out, fixing things for other people. Something happens? I’m all over it. But this has got me absolutely floored and I feel helpless.

  • Hi Jacky, glad you've come out of the closet.... Joy. No one wants to be on this or any other cancer forum.

    Firstly let me say I have no experience of what you and your husband are going through right now. 

    I have Oesophageal cancer which was operable. I had all the usual investigations at the beginning like you. Then I was put onto FLOT chemo before surgery and will be receiving my third round of post op chemo in the morning. My profile reads like a diary/journal and may help you a little.

    Surely there is more than one way to get food in. Through a tube directly into the intestine. Don't know it's proper name but it's a surgical procedure to insert. Ask your oncology nurses for options.

    I wish you all the best going forward and hope your husband finds a way to getting some relief. If he goes on chemo and it shrinks his tumor it will happen pretty quickly which should help with eating.

    Best regards

    Geo. Heart

  • Hi Jackie

    I have a RIG fitted.  It's a tube that goes directly into my stomach wall that I put all medication and liquid feed through.  I don't have to rely on any other way of feeding and it has enabled me to maintain my weight and nutrition.  I've had it for over a year through chemo, radiotherapy and now palliative immunotherapy.  I did start with a nose tube but for various reasons I couldn't get on with it. And with the duration of my treatment it wouldn't have been suitable either.

    With everything your hubby's going through this sounds like the ideal solution.  It is reversible so can be taken out when he no longer needs it. 

    Just my thoughts.  Good luck

    Mel

  • Hi Jacky, 

    I was diagnosed a week later than your partner but am also due to start chemo on 14th December. Fortunately I am still able to manage soft foods, shakes, smoothies, etc although it isn’t always easy to get them down. I’m hoping once I start on the chemo that things will get easier and I might even be able to manage a little turkey on Christmas Day. Maybe I’m being overly optimistic but keeping positive is the best way I have of dealing with this situation which, even just 3 months ago, I had no idea I would be facing. I wish you both well in your journey.

  • Hi I am the same with the foods, I am also hoping for some festive food over the holiday period. Have you got a go to site for smoothies? and what shakes do you take.  Hope you don’t mind me asking. 

  • I was given this booklet by the dietician at my MDT meeting. It contains different recipes for soups, light meals, main meals, desserts, smoothies and milkshakes. It’s obviously an Irish publication but I’m sure there’s something similar wherever you live

  • Thank you, I will ask the dietitian Slight smile