HPV Tonsil Cancer & RIG question

Hi,

I'm sorry to hear about your mum. Please assure her that it does it better.

I was admitted to hospital in week 4 of my treatment as I could no longer swallow and became poorly very quickly.

I had feeding tubes in my nose for a week before they fitted my rig, and I can really sympathise with your mum, it was agony for about 4 days. I had to have help sitting up, getting out of bed etc. I was on a lot of pain killers. It really took me by surprise how bad it was. However, after 4-5 days, it got better very quickly and by day 7 it was back to normal.

I really wish I'd have had it fitted before treatment started as I was still being wheeled down for radiotherapy from the ward whilst in a lot of pain with the rig. They won't stop treatment once it's started. 

I can't imagine it will delay your mum's treatment, she'll probably be feeling loads better by Monday. 

Sending your mum all the very best.

Thank you so much for taking the time to reply. 

Although I'm sorry you were also in a lot of pain with your rig. 

I'm hoping to go and visit her later and will let her know it does get better. 

Thank you again. 

Had a PEG put in, one night in hospital after procedure then home, a week or so of moderate site and abdo pain, annoying but it was well contained by pain relief, make sure the RIG site is kept sterile, any infection can be troublesome.

M

hi welcome from me. Imm7 years post tonsil cancer T2n2 nm living a great life. Can’t help with  peg question  but from listening to others takes around 5 days and buscopan from che its  can help often it’s trapped wind My feedingbtube was a ng tube and fitted when u needed ut. She more than likely will need it aaa its hard to,imagine being unable to swallow even a sip,of water but for many of us we get to that stage. 
Take everything one day at a time and help your mum as much as yiu can she will need help my hubby did everythjng for me 
Any questi9ns just ask we’re all happy to help. Treatments hard I can’t lie recovery’s can be long but it’s certainly worth doing. Hugs Hazel x

Hi welcome to the group. The pain will get better after a few days, just make sure the area is kept clean, bathe it with warm boiled water, also flush it out every day. It will all be worthwhile having it, if eating becomes difficult during and after treatment, lots of people consider them their lifesaver, mine certainly was, I was 100% reliant on mine for about 10 weeks. We are all here to help if you need us, ask any questions you have.

Ray.  

Thank you everyone. 

I've been to see her this evening, she doesn't handle being sick or feeling sick at all. It's almost like a phobia and unfortunately this has made her feel sick due to all the trapped wind. Hopefully it will all settle down in day or two. They are keeping her in at the moment until they can get her to eat. 

She was able to get out of bed unaided a d walk around without too much issue, it's definitely the nausea that's the issue for her. 

I've told her a day at a time and each day is a step closer to finish of treatment and then recovery. 

I'm extremely grateful for all of your replies. It's reassuring to know this community is here over the next few months.

Hi yes I had an awful time with my PEG insertion. I have a similar story to your mum. Lump on neck that I didn’t check out sooner resulting in HPV tonsil & lymph node. 

the day after my PEG my stomach was so distended and swollen it was like a balloon and the peg clip was embedded into my stomach. I was in a huge amount of pain but was pretty much ignored as it’s normally a day procedure so nobody believed I was in pain. By day 4 the clip had created a sore where it was digging in and everything was oozing blood & pus. The whole area was bright red and hard, but they still sent me home alone after taking a swab. I could barely move I was in so much pain. Luckily my macmillan nurse was amazing and got me antibiotics after seeing it. 

it’s been in 2 weeks tomorrow and it’s still sore to touch and slightly red but the worst is over and I’m looking forward to getting it looked at tomorrow & then having a bath! 

Crikey!  That's horrendous and I'm glad you're on the mend.

Enjoy the bath which I'm sure will make you feel loads better.

Gill xx 

Hi there, I am so sorry to hear that you are in so much pain with your PEG, my husband had one fitted prior his treatment,and apart from being uncomfortable and some pain after it being fitted he had  had no problem since. However, he had that one replaced after so many weeks,as apparently it being in for so long, PEGs should get replaced, to avoid infection or it breaking. Anyway, a couple days after the new one got fitted, we noticed that it got sore and red underneath the disk and he was getting pain, we called the hospital were he had it refitted,we got told to come in straight away to be looked at, on arrival we got told that it was a good thing that we did,turned out it was to tight and it started to get infected. They loosened it,cleaned the area and prescribed antibiotics. He started to get better after that. So for you to be told that what your are experiencing is normal and you shouldn't be in pain,, I find it very questionable. Hope you will get your PEG sorted, it was a life saver for my husband aswell, also we are working hard for it to be removed. All the best and hugs, fellow wife Mel x

Hi, sorry to hear about your Mum's diagnosis and now this issue with the feeding tube. I had a PEG. First attempt failed (didn't know that could happen) and it was quite an awful experience. Second time was much better but it was only 3 days before I started treatment. I was in pain and getting on and off the RT table was tricky though the team was lovely and helped me with that. It was definitely more painful than I expected (thought it'd be a breeze having had a major surgery some years ago). It did ease after about a week. The key thing is to keep it nice and clean and flush regularly. 

Not meaning to chime in with a horror story but more just to say that these things can be horrendous but it does get better...

And if it helps to know, after such a horrible start, my treatment actually went well. It was a challenge and the effects are brutal. I didn't use the PEG in the end as managed to maintain my swallow but things can go down hill fast and I always felt reassured knowing I could switch to the tube if needed.  

The better news is that I'm now over 1.5 years post treatment and a lot of this is just a distant memory and life it pretty much back to normal now. 

So hang in there (you and your Mum)... better days are coming x