Evening all - So, here's an interesting one to ponder around feeding tubes -- the "to intubate or not to intubate" debate!
I questioned having a RIG inserted during treatment (week 3) due to the discomfort I've read about from others on here. My head & neck specialist nurse says they do fit them during treatment (while others have them before it starts) and while there can be some discomfort (bloating, wind) most people are fine with them this way.
Duration of RIG/ PEG - I asked how long they have to remain in - she said usually until after the post-treatment scan. I think this seems rather too long! But the nurse reassured me that they could be removed earlier only so long as the team (dieticians, oncologist, nurses) are happy with oral eating and I've maintained weight. So it all depends on the person, which makes sense.
NG Tube - I asked whether I could have an elective NG tube: to my great surprise, in north Wales they will agree to having the NG tube but I would be admitted and have to stay in hospital for the duration of treatment and until oral eating commences! Seriously?! I questioned this (obviously) but was told this is how they do it in N-Wales. (She added later that if the team/ dieticians agreed then there is a 'possibility' I may be able to manage at home). I would NOT be happy going in staying in hospital for potentially weeks. Nope! Seems quite strange to me considering most people on here that had an NG went home and managed perfectly well...
NO tube at all! - I understand some hospitals (e.g. Royal Marsden) do not do tubes unless absolutely essential, and prefer to encourage normal eating as far as possible. Also make sense to me.
It does seem like a bit of a postcode lottery in terms of what is given (or not).
Anyway, thought this would be food for thought (pun intended!) 
Helen x
I could add that both Hazel and I know somebody who had her treatment privately and she ran into the same problems. Her care was quite disjointed and she had to chase a lot up. Her treatment was spot on though
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
https://todaymycoffeetasteslikechristmasincostarica.com
It was always emphasised to me Helen, on both occasions, that getting the right treatment was more important than getting quick treatment; my second go was actually delayed by a few weeks because my wife died and I had to arrange her funeral.....I must've been reeeeally bad in a previous life!
Difficult to be a patient patient I know but it'll fall into place soon I'm sure.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Thanks Hazel x
I didn't watch the whole McCartney set because it went past my bedtime
. Hopefully it'll get put online at some stage in the near future; we actually lived three miles away from Worthy farm for a while in the nineties but never went. Always found it amusing that the festival site is actually much closer to Shepton Mallet than it is to Glastonbury, but "Shepton Mallet festival" doesn't quite have the mysticism of a Glastonbury connection.
Thing that made me laugh was watching Noel Gallagher's band before Macca came on and they had some woman playing the scissors. What? My son told me she's some sort of French avant garde performance artist who specialises in the scissors....mad.
I was lucky enough to see McCartney play at Wembley arena in 1990 though, a great experience...was also at Live Aid in 1985 so saw him briefly there.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
it's on iplayer
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
https://todaymycoffeetasteslikechristmasincostarica.com
Thanks Dani, it wasn't there earlier when I checked, I'll have a watch.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
