Peg or not Peg!?

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…..had a fab time skiing!!  Sooo glad I sent, actually took my mind off the crap…… for most of the time anyway.

So now it’s back to harsh reality, and the waiting!!  Oh my word how much longer till treatment starts, patience is not my strongest point.

Met Oncologist, dietician, bloods and weight taken, teeth xray, all last Friday.  Teeth review tomorrow Fingers crossed tone1and all being well, treatment will start in the coming weeks???  Turns out, whilst it seems only one side of my mouth is affected ie tonsil, secondary in lymph on my right side.  They’re going to treat the lymph on the other side too.

The ‘peg’ was mentioned, though most of the staff seem to say try without!?  What do you guys think??

Many thanks and a very anxious

Deborah

ps and did you guys put much weight on before treatment started!?  I’m very fit for my 57 years and 70kg, should I gain more?

  • Hi Deborah. So glad you had a good time. 
    I wasn’t offered a PEG. Just not Trust policy but did sign for an NG tube if needed and boy was it! 4 weeks in and I couldn’t swallow anything. Had it in place for 8 weeks. It saved my life. 
    As for putting on weight ask your dietician? To my mind what you need is protein as well as energy to tolerate the bashing you get and to speed recovery. You can’t put on protein. I was 55 kg when I started and about 53 when I finished. I did lose a bit after treatment but it went back on after 18 months. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

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  • Hi Deborah, I would always advice anyone to have a PEG or a RIG(they are both very similar). I had a RIG which I was 100% reliant on, week 3 of my treatment, it was my lifesaver. Even if you don't need it, it's better to have it and not need it, than need it and not have.

    Ray.

  • Thanks Dani……so would you have opted for the peg in hind sight? 
    I’m even afraid of have that procedure…..I have agreed to the nose option, sounds like it might be inevitable.

    It’s the indignity of it that’s bothering me I think, silly I know when it’s obviously to save your life!!  I guess by that stage I won’t care, goodness it’s scary Cold sweat

  • Mm thanks Ray, that’s what I was thinking but don’t like the sound of the procedure Scream

  • Hi Deborah, sounds like your ski trip was a tonic. I had a PEG.  I managed to eat throughout and post treatment (those 2-3 weeks when you finish are pretty tough) so I didn't use the feeding tube in the end.  However, my experience is not the norm so I would probably advise having it though as it might just save your life, if you just can't swallow at all. I did go down to soups and shakes towards the end. I was about 80KG when I was first diagnosed (so could stand to lose a bit of weight anyway!).  I probably went up a few KGs pre treatment. Did pretty well maintaining my weight though probably lost 2-3KG during treatment.  I finished treatment 6 months ago and guess I've lost about 10KG in total over that time. 

  • Hi Deborah

    Doing something before treatment is a great idea.  Each time I've had the diagnosis and gone off on holiday in the "waiting" time.  Keeping fit is going to also give you a great head start.

    I put on a few Kg before treatment started, mainly because I went and ate what I wanted when I wanted knowing  that once treatment started and with an unknown recovery it may be the last I had of those foods.  Whatever weight you have your mask made at you should ideally stay at that weight.

    Definitely a PEG.  I got right to the last day of treatment still eating, but that last week was tough and after the last RT session I got hold of the dietitians and had them give me pump food.  I was already set up for it as they thought I would be on the pump from week 3.  I had already used the PEG earlier in treatment when the chemo made it difficult to eat for a couple of days.  You will not regret the decision to have one.

    For me it was an easy procedure and I insisted it was done before treatment started.  Took a couple of days to settle down and I've not noticed it since.  Personally I could not face an NG tube and every clinical friend I have talked to said they would not have one.  I've a friend who is on one now and they are a right pain to manage and he keeps throwing it up. 

    Peter
    See my profile for more details of my convoluted journey
  • Thank you Peter, good to know!!  It’s such a difficult decision, made more difficult as the oncologist didn’t recommend it.

  • Good to hear from someone who cracked it without, well done!!  The oncologist hasn’t recommended it, so I’m leaning towards giving it a go without, but honestly, it’s doing my head in Scream

  • In stark contrast, when I had my first meeting (post diagnosis) with my whole medical team (surgeon, oncologist, dietician, speech & language, Macmillan Nurse) I asked if I could make it through treatment without the PEG and they all shook their heads! I hated the idea of having a PEG but got used to it being there very quickly.  Had to flush it twice a day, every day, just didn't use it for feeds. I was lucky, I maintained my swallow - most don't. If you are going to try to go it without the PEG, start doing the swallowing exercises asap (I got them from Speech & Language therapist). I did them every day which I guess put me in good stead. 

  • That’s great to know, haven’t had those exercises recommended yet……i meet with the team 3rd April, I’ll be sure to ask then!?

    Thanks so much!! X