PEG removal and what to do with the mask

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Hello,

I am in last week of my treatment and, as most of my radiotherapy is focused on my nasopharynx and I get a low radiation to my neck, I am not too bad. I do use Ensure mostly as the food tastes horrible but I haven't needed the PEG tube as of today. There is a long waiting list for the PEG removal so this will take time, however, I heard that mine will be removed the similar way as fitted, via endoscopy.

Unfortunately I was in a lot of pain after the tube fitting, I guess the air they pump during procedure was the main issue, it couldn't get out as I couldn't move much. I don't want to scare those who will have one fitted because most of the people seem not to have these issues. Also they were resolved in couple of days and I haven't had any issues since then. I would be grateful if anyone had the tube removed via endoscopy could share their experience? If the air will have to be pumped again? Also how long it takes for the wound to heal and any tips for that?

I am thinking about what to do with my mask, I am not sure what other people do. My husband would take it home but he likes to store everything. I can't imagine the function for it, except putting it in the loft. I don't think I would like to look at it every day. Have you kept yours or if not, were you sorry for leaving it in the hospital? I was so scared of it, of the fitting itself as I am claustrophobic but I haven't had any issues during the therapy. I sort of accepted it as my friend who keeps me safe and I trusted the team around me.

  • Hi Rose. I can't help with the PEG, sorry. I know they usually come out with a quick pull or a snip, push and poo out. I have read that they can be removed with a push if you can't have a gastroscopy so do ask, because they do have to fill you with air again.

    Mask. Your comment about your husband keeping everything made me smile...I have one of those. Whose mask is it?

    I didn't keep mine then wished later I had then even later was glad I hadn't. As you say why would you like to look at it. Folk pimp them and hang them in the shed, use them as flower pots, keep them for halloween...all sorts

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Thank you Dani! I saw that about quick pull but it seems that they would do the full procedure. I am not sure also, when they just pull it out, what happens with the plug in the stomach, if that gets out OK.

    It is my mask, not my husband's. It seems that men like to keep things thinking that they might need them. But they mostly don't :) I was thinking about using it in the garden but the only think I can think about is burying it...then it can as well stay in the hospital.

  • only think I can think about is burying it...then it can as well stay in the hospital.

    Joy

    The plug in the stomach just goes out with your poo

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • PEG removal was pretty straightforward and painless, a few minutes prep and explanation...then a quick pull and it was out... felt like someone pinged me with an elastic band...

    I was offered my mask when the radiotherapy finished... I declined... I didn't want any unnecessary reminders 

    Michael

  • Thank you Michael, let's see if they will offer me a quick pull.

    Totally agree with the mask, even some clothes remind me of chemo sessions and I don't want to wear them.

  • Hi Rose, I had a RIG which is similar to a PEG, the district came to the house and gently pulled it out, no pain, and the hole very quickly healed over. As for the mask, although it was a big part of getting well, I didn't want it.

    Ray.

  • Thank you Ray, I do hope they will do the same form me.