PEG decision

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Hello All, 

I have one day left of Radiotherapy so Yay to that! However, I need to decide whether to have a PEG or not as my nutritional intake is really terrible, in fact I fear I have become somewhat anorexic in terms of the generalised fear and disgust I have for putting things in my mouth. It's not even pain at this point. Just a complete lack of will power in order to do so. I just started on the Fortisip, but even that I am struggling with. Last two days I managed to get 2 in just on each day, and current goal is to reach 3. Bit I've been sitting next to this one here for about 5 hours! I should be able to just drink it , but I just can't and I really can't explain why. I think it's psychological really. I was thinking if seeing how it goes after a couple of days off, and I'm not travelling 3 hours a day for treatment to see if that affects the sickness etc, a lot of dry vomiting going on, but actually was sick last night. It seems a bit weird to to onto a PEG after treatment rather than during. But I am erring on the side if just getting it at the moment. And from what you all said it seemed quite a good option, and might aid speedier recovery in the long term. My main concern is that the sickness won't abate with that either. I was sick with the NG tube after surgery, as well as sneezing it half out. Which was fun after a partial maxillectomy!  Any thoughts? 

Rx

  • I got through treatment without a RIG/PEG but then had to have an NG tube fitted due to extreme nausea & vomiting. The tube was a huge relief, I kept it for about a month. 

    I hated Fortisips but could just about get them down with a lot of ice and a straw.

    Good luck! 

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story

  • Hi Cat,

    that sounds like me. Bit scared of NG as already have a permanent nosebleed, and after the surgery I sneezed it out ending up with what looked like a massive proboscis swinging about. Couldn't wait to get it out. 

    Fortisips is horrible! So dry! I can't even think about it without feeling sick at the mo. They've given me a different anti emetics to stop the gag reflex who seems to be helping. 

    I am trying baby rice today. Going to try tiny portions every couple of hours. And see how that goes. 

    Tempted by the tube though, just so  I don't keep worrying about dying of anorexia! 

    Thanks

    R

  • Yes I am a bit worried about lack of access to anything over the holiday, especially as my GP surgery is impossible to access anyway, and it takes two weeks for them to process a letter from the hospital, by which time it's too late and you are left with nothing. 

    The hospital wrote to them telling them to put Difflam on repeat, which the refused to do. I have to go through the surgery every time. And even though the letter specifically told them I'd need it for a couple of months, once they'd processed the letter, after my nagging, messaged me to ask if I still need it. 

    It doesn't instil confidence! 

  • Quick Google search suggests that you can get Difflam  or its generic equivalent over the counter if you get stuck.

    Have to say my GP has been superb from the off.  Her really quick response to my first approach when I discovered the lump led to fast diagnosis and treatment.  She hasn’t quibbled about anything the hospital/dietitian have requested and all requests have been actioned promptly, for which I am hugely appreciative.  It must be awful to have to fight the system as well as the cancer and its aftermath.  Why can’t all surgeries deliver this level of care?

    Liz

  • Quick Google search suggests that you can get Difflam  or its generic equivalent over the counter if you get stuck.

    Yes it’s Benzydamine 

    Its what I was always prescribed as it’s cheaper 

    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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  • 18 months after finishing treatment I still have the need for Difflam or its generic version... no probs with prescriptions....so far.

    Peter

  • Yeah I get the generic, it's just easier to write Difflam and everyone knows what it is. It is available over the counter. It's just the annoyance of having to debate with the surgery. Why they can't just do what the hospital tells them I don't know. Probably something to do with  internal markets and competition I expect.

  • I think it’s cost. It’s the reason why some people can’t get Duraphat 

    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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  • Update 

    Hi All, thanks for all your advice and experience it's been good .

    I'll be getting an NG tube in the next couple of days. I think that'll be a relief I think! 

    Thanks

    Rachael

  • I think that'll be a relief I think! 

    That’s good. It will take the heat off

    I had no problem with mine. 

    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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