I am entering my 4th week post treatment. The last 2 weeks of treatment were tough. The team had told me that things would continue to escalate in the 2-3 weeks after treatment and for a while, things were pretty bad. I had some killer radiation burn (thanks for the tips on a previous post) but after some pain, tears and some excellent dressings - they healed up really quickly. I think I turned a corned a week after treatment ended and went down to paracetamol at night only (previously took it 4x a day). I had liquid morphine on standby but never used it. The week after I came off painkillers completely and last week, started having visitors again. I have maintained eating throughout so not used the PEG. My taste is probably at about 30-40% and can't have anything sweet including fruit/fruit drinks. I was on soft foods, soups, and Ensure drinks for the final week of treatment and into post treatment. However, I've been gradually building up and now eating roast dinners (well mainly the meat and vegetables - potatoes have no taste!). I am prone to horrible coughing fits - especially when I eat but even that is settling down. I was finding the coughing would wake me up in the night and I'd need to expel the secretions (yuk!). Last night was the first night that didn't happen. I tend to have mad, dry mouth first thing in the morning but then it's fine the rest of the day. On the whole, I'd say, I'm powering through the side effects. There is a part of me that thinks this is great. I like to smash targets and feel like I'm doing better than expected. But then another part of me worries that perhaps this is a bad sign... I won't have my scan until Dec/Jan so it's a while before I know whether this has been successful. Anyone had similar experience to me? Also, keen to know of experiences of having the PEG removed. I'm desperate to get rid of it. Was in my head about having it in the first place and had quite a bad experience as it failed the first time (and the sedation didn't work so it was all a bit traumatic) but given I've not used it, want it gone. Dietician said they usually like to leave it until after the scan in case further treatment is needed. Again, any insight would be welcome.
Hi Liesle R
You seem to have done really remarkably well with your recovery. Well done.
The PEG just pulls out quick as a flash and doesn’t hurt
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Liesle , my partner finished rt 2 weeks ago and he's team didn't want him to have the PEG out yet. Like yourself he never used it and not had a pleasant experience with it. It was in a week and the balloon burst so he called nutrition nurses but because it was 4.40pm and they finish at 5pm they told him to make sure the PEG stayed in. He then rang the Fresbusin nurses who also said they couldn't come out and we went A & E who said sorry there is nobody here who can deal with this. Anyway it was sorted the next morning after rt. He recently had another problem with a valve and the PEG fell out. He said it didn't hurt but was uncomfortable when the balloon popped. He's now PEG free and a week later the hole from where the PEG was has healed up nicely. Wishing you all the best 
Whoa x that's a lot with the PEG! Don't want to tempt fate but I've not had any issues with the PEG - would just rather not have this tube coming out of me. Plus the daily maintenance is a pain when I just don't need it. Glad he's now PEG free and that the hole has healed 
I just worry that maybe I've been resistant to treatment (eek!).
Treatment failure this early is practically unheard of
You don’t say what stage you were and whether the cancer is HPV +ve
Virus driven cancer is very sensitive to radiotherapy and cure rates are very very high, in excess of 85%
So try not to worry
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I spoke to macmillian nurses as he's team was not as supportive and if you not using it and are unhappy make sure they are aware as it's ultimately the dietician who makes the decision i have been told. I think you lovely people have been true warriors and anything to help you feel better should be done. My hubby was in so pain presurgery and just after and seeing him pain free but upset because of the PEG was the worse. Luckily now he's happy and making good roads. Wishing you all the best 
