Feeding Tube

1 minute read time.

Yesterday was our first visit to The Christie Hospital, where Ned will be getting most of his treatment. My Sat-Nav took us a very strange route, so I will not be blindly trusting it when we go again today!

The doctor spoke to us about everything he had mentioned previously, and about the new nausea symptoms (which were thankfully not present yesterday though they have made a bit of a return today). He also put a camera inside so that we could see the tumour, and he showed us how it has grown but isn't spreading. 

One major development in the last couple of days has been the decision to fit Ned with a feeding tube. The location of the tumour would make it really hard to put one in through his nose, so they are going to admit him to hospital at the end of this week and fit one the goes into his side straight into his tummy. They say that it's much better to get it sorted before his treatment starts, rather than reacting to an emergency need for one at a later date. It will also mean we can get enough nutrition into him, which has been a struggle for a number of weeks now. I have mixed feelings about the whole thing.. I'm nervous about the operation and about being able to maintain the tube and feeding without messing it up... but I'm looking forward to Ned having more energy and getting all the nutrients he needs. I trust that it's the right thing for him, but that doesn't stop it making me a bit nervous.

Finishing on a lighter note, I was quite proud of myself yesterday, I made a meal that he could actually eat and enjoy (a rarity these days) that wasn't soup! I made mashed potatoes, pureed carrots and then blended up some chicken breast with gravy. He loved it! I will definitely be trying out more meal ideas like this.

Anonymous
  • FormerMember
    FormerMember

    Hi Weezy,

    You should be proud - I'm glad he enjoyed the meal so much. I always remember a news story about a rogue Sat-Nav where the man ended up in France...

    Really enjoyed reading your blog so thank you.

    Jess

    Macmillan Community Team

  • FormerMember
    FormerMember

    Hello Weezy

    The feeding tubes are definitely worth having, mine helped a lot with my recovery.  I felt a bit nervous too at the beginning but you soon get the hang of them.  I think I only got muddled once and ended up covered from head to foot in strawberry feed.  It easily washed out but sadly my slippers were never quite the same again. 

    Your blog is very good, I will look out for the next entry.

    Margaret x

  • FormerMember
    FormerMember

    Hi Weezy,

    I feel for you and your husband, I had a tube fitted before treatment 3 years ago, I am the biggest wimp around so I was dreading it but it wasn't too bad, I couldn't remember anything after being wheeled into the endoscopy room! I was also very squeamish about what to do after it was fitted ie turning it and moving it in and out but I got used to it, I wont say I enjoyed doing it but it became routine. I did have some accidents with the feeding but it was mainly due to a delivery of the wrong tubes which had an additional input valve which unfortunately opened a couple of times - once in the queue at Tesco which was mega embarrassing! I started off feeding overnight but it didn't agree with me so I changed to daytime which was slightly better.

    A blog is a great idea, I wish I had done one, it is amazing how quickly you forget, the nearest I got was a diary detailing when I took my medication and when I was sick - I was trying to find a correlation. I also recorded my weight - the nursing staff were obsessed with weighing me and it rubbed off!

    All the best for what lies ahead, it is not pleasant but tell your husband to take it one day at a time, I ticked off in my head all the episodes I had gone through - 30 RT sessions, each chemo, each scan, etc It may not seem like it at the time but it is worth persevering with the treatment!

  • Hi weezy I didn't fancy cleaning around the " ju ju " tube as I call it and putting the tegaderm dressing on . The thought terrified my wife she is scared of knocking the tube out, we compromised I clean she applies the dressing. We've been doing this for 3 weeks you will get used to it. We were shown by a nutricia nurse how to setup the pump and food bag, it's not as difficult as you think. Go for it girl ! I have similar dinners mashed up but tasty. Best wishes

  • FormerMember
    FormerMember

    Hi All, 

    Thank you so much for all of your replies, they are so helpful and really comforting. I honestly didn't think anyone would be reading my blog, though it makes me happy that you are doing. A particular thank you to those who shared stories about your own feeding tubes, it's comforting to know it's not as difficult as it currently seems. Zappaman, I especially like the way you and your wife have different jobs in caring for the tube and the feeding, I might see how Ned feels about doing it that way.

    Oh and I'm certainly glad my SatNav didn't send me to France! I think that might have made us rather late to our appointment, despite my neurotic "arrive half an hour early" rule.