Back home with tube !

My head is all over the place - I worked right up to the tonsillectomy, not the tube. 

Hi Steve

The PEG and RIG are similar, just the insertion of them differs.

It should settle pretty soon

P16 is a protein found in normal cells. HPV infected cells cause too much to be made and the histopathologist can stain the biopsy slide to look for it. It's a good surrogate for HPV infection, therefore. It's not perfect, only DNA testing for HPV is foolproof but it's good enough in our cases.

Good luck with the rest

Thanks Dani, so I should describe mine as ‘P16 Postive’ for accuracy? And I have a RIG rather than a PEG. Ok thanks. This place is a mine of information! Glad I asked.

Zenkodo said:

Thanks Dani, so I should describe mine as ‘P16 Postive’ for accuracy?

Nope. You’re ok with HPV +
xx

I have a tendency to spout science lessons … ooops

Well I’m glad someone is on top of the science! I’m hopeless with it.

Hi Steve, it's good your RIG fitting went well, it will be a god send if eating gets difficult during your treatment, I know mine was. Any worries or questions just ask, we're all here to help each other if we can.

Ray.

Thanks Ray, nice bike! I think my biking days are over. Yes the RIG wound seems to be healing. I’m to eat at least one meal a day through it just to get practice and keep it clean etc. I don’t think I’ve heard anyone say they had a tube but never needed it ! I’ve heard plenty say it was a life saver.

Steven 

Hi Steve you are  another step forward. HPV is fine it’s what we all call it. Remember HPV driven tumours respond extremely well to treatment so that’s a positive on its own. I called my ng tube  Michelin as it certainly fed me wouldn’t say the quality was Michelin standard but it kept me alive and enabled my recovery enough that 8 weeks after treatment I flew to Spain. Moral is don’t struggle the tubes there for a reason so use it when you need to. 

hazel c

I have a RIG tube too - I think it is radiologically inserted gastrostomy tube - they use x-ray to work out where it goes. I was quite uncomfortable for 48 h inside. It felt like they bruised my diaphragm putting it in. Paracetamol took care of that though. It's still in 5 months later but apart from making sure it is clean and flushing it with water every morning I don't even think about it. I fortunately never needed to feed through it but did use it for about three weeks to take medicine (paracetamol hurt to swallow and I couldn't swallow ciprofloxacin tablets). My only real concern with it was changing the water in the balloon - I got the nurses to be with me three times before I was comfortable doing it myself. I really didn't want the thing to fall out.... I'm fine with that now.

I worked up until the tonsillectomy, then went back 2-3 weeks later. Quit when I started RT+chemo. 12 week after finishing I am now dipping a toe in it doing 2-3 h/week. That is ok but not ready to go back to what I used to. I'm hoping to in the spring, so about 6-7 months on (fingers crossed). 

Thanks Mike, it’s really good to hear different experience - you are the first I’ve heard say they had it fitted but never needed it. Had mine fitted on Wednesday. I haven’t been shown how to fill the balloon yet. I thought if had air in it, that's how clueless I am at the moment! I’m being shown on Tuesday. It feels like it’s healing ok. I given up thinking about returning to work. One thing at a time,