hi all I'm new to this forum I was diagnosed with tonsil cancer 3 months ago I've had 2cycles of cistplatin and 5fu and I'm starting radiotherapy next week anyone I can talk to on here would be great feel so isolated.x
Congratulations on completion of the RT. I am a few weeks ahead of you and it felt great to have the mask removed on the final session.
Seriously impressed with your resilience on the pain and eating front. Heroic or what!!
I was advised to have a PEG by my consultant and was dependant on it for about 10 days. Before treatment I was adamant that I wasn't going to have a gastric tube but felt it was for the best. Kudos to you for managing without. Wow!
I too have been relatively drug free on the most part but used paracetomol and, for a short while, amytriptaline to help sleeping. Thankfully everything improved for me following radiotherapay that I have been able to eat and drink fine. I really want shot of my stomach tube asap. Apparently I just need to maintain my weight for a few weeks and it will be removed. Thats a bit odd as I am now a far better weight than I was and could really do with losing a little more - especially around the waist. To blow my own trumpet I am eating well now even if the choice is limited by taste or lack thereof.
This post RT few weeks has been interesting. I recall Gary (Vatch) on his blog mentioning the Dr Who regeneration period. Maybe too early for much change but the soreness seems to be in daily rotation with various parts of my mouth and throat. Only now after two weeks has much of the swelling subsided. So much sputum/phlegm in the last few weeks too. But that has now has settled down nicely. Still a bit thick but managable and glad to be still producing sputum.
Sadly I am more than a little anxious that everything has all gone to plan. I desperately need that 'all clear' in about a months time. Arrrrrrghh!!! Fingers crossed for you too.
I was provided with analgesic spray but never used. I have a few persistent mouth ulcers but bearable. I have lots of codeine (liquid form) too but not needing that either. I hope the morphine works well for you. Happy dreams.
You sound heroic yourself! Although never confuse my heroism with being wee and grumpy.....
When I initially logged on to the tonsil chat threads I couldn't believe how much people made of it being a club or a gang or a special group but I have come to understand that totally. So many illnesses are better known and understood that the explanation of tonsil cancer gets quite wearing. And trying to get across the idea that even a sip of nice bland water can set your mouth on fire can be frustrating.
I am in awe of you and your tube. I just couldn't have done that. Mine was to be naso gastric and I am coughing up so much mucus that I really think I would have clogged it or disloged it anyway. (See! Where else would I get to say that to a strange man?)
I brought my mask home and found my partner standing examining the clips the other night. Although he had been there for everything, he never saw me on the table, obvs, just internet images. He was a wee bit upset. He said that although I had explained it and he had seen the pictures, he never actually grasped the concept of being fastened to the table and he found that scary. He was doing so well with it, I thought, that I never even imagined he wasn't.
Anyway, sorted now. My nurse is going to phone me tomorrow so I better go and try to make my scales work . They are more cantankerous than I am. I bought these big fancy ones and they keep asking me if I am male or female and if I am person 1,2,3 or 4. I have set them up so many times..... I will have lost weight anyway so I am probably just as correct taking a kilo off the last time. But, you know, honesty. And I am still mightily overweight although I know I need to eat to heal etc.
Got my ENT appointment in on Thursday. 18th March. Should have some good results to show by then! Maybe I'll have regenerated into something fun! Ooh, I'm away to choose what I'll regenerate into. Or who.
Wishing you loads of luck and health towards your appointment. Keep in touch.
ghus isn’t hazel I am 22 weeks post radiotherapy for tonsil cancer I had 35 radiotherapy sessions and 2 chemo cisplatin welcome to the club no,one really wants to join.
I have a blog where I have detailed my experiences justvremember we are all different Hiw we react to treatment and recover.
I never lost aste many do I also maintained some swallow. Didn’t have a peg my oncologist said I wouldn’t need one but had a feeeingbtube from abiutbweek 4
my blog is www.radioactiveraz.wordpress.com
myndiagnosis was T2 N2 NM0 h p v 16 + wasnguven the all,clear 3 weeks ago ow living my life it’s not easy but if I a 61 wimp if a female can do it anyine can
lots if help,on here just ask my Radiotherapy tram we’re brilliant the hardest part is recovery after treatment I found.
Well done on completing RT !! I am suprised they didnt prescribe Oramorph initially. For me at The Christie in Manchester they did as a matter of course, plus the nutricionist prescribed Fortisips 2k supplements. I didnt have a tube but I did go from 91kgs to 77. I am now 80kgs and eating is becoming much easier as the weeks pass. Even managed Steak pudding and Chips although smothered in Gravy last week.
Cisplatin has affected my hearing and this ones a bit wierd, both my wife and daughter to me have developed bad lisps when they speak. I mentioned this to the staff and they said it was a new one on them and nothing more was said. I have since read on an American forum of someone having exactly the same experience and it was down to the Cisplatin causing some hearing loss in the high frequency range, hence me only percieving it in certain female voices. Anyone else had that as a side effect?
My nurse phoned yesterday and is still with the tube. I have to phone her tomorrow or Friday again. I am feeling really pressured but deep down think it is not for me. She is annoyed that in 7 weeks I have gone from 112 to 96 kg. I know that's a lot but there's still quite a fair chunk of me left.
Anyway, have yesterday managed to invent ( yeah, like I'm the first) Ensure strawberry shakes with milk, ice cream and honey and Tesco frozen bananas and strawberries. Not horrible at all. Today looks all exciting as I have lots of Ensures, mango chunks and raspberries. And, not to be indelicate, today has been a heroic mucus day and I'm hoping I've turned a corner..
My hearing has always been ok. I've been pretty lucky. In fact, I'm the healthiest sick person you'll ever meet. Paradoxically, off to take my drugs!
