Squamous Cell Carcinoma of the Tonsil.

Hi, Anybody else with this cancer? I was diagnosed 1/12/17 and treatment started 18/12/17. Entered a trial, 25x weekday daily radiotherapy plus 5x Chemotherapy. OK until start of week four, but had to start co codomel last night. Appetite has gone and forcing the fortysips down is a real problem, but have found thin porridge with honey to be good. Really find pureed meals inedible. I know it is only going to get worse over next four weeks. Any tips or thoughts. Thanks.

  • Yeah you told me this before about the plastic drawers... I'm going for shock value going to do it right at the table.. Lol

  • Hi Paula, sorry to hear that things are not moving as fast as they ought. As for the dental issue, you must have been treading on robins for years. I went to the dental hospital in Birmingham with one crown in my pocket - it dropped out two years ago - and a mouthful of 1991 fillings. Apart from an instruction to start flossing, I got a clean bill of health.

    You may recall that I had had a pretty easy ride through chemotherapy/radiotherapy. That finished three weeks ago and since then it has been payback time.  I have had to go back twice for daylong fluid infusions and have been a slave to mucus and nausea. I cannot get anything down apart from fortijuice and water. Just watching somebody on tv eating, drinking or smoking, makes me want to heave. I was prescribed Haloperidol, but did not get it until Saturday. Googling it shows that it is mainly for severe mental issue patients. It is also for palliative Chemotherapy patients. And here's me thinking I was a curative case. I will check with the consultant before taking the stuff. My wife says I should double the dose and kill two birds with one stone. 

    On the positive side, I have not needed pain killers since last week. 

    Hope you start your treatment soon.

    Best wishes

    John

  • Hi Catch, you were right about the chips! Managed 3 in total with loads of water, didn't enjoy the gravy either. Clear soup and yoghurt are about the only thing I eat 'normally '. I ate  a chocolate marshmallow teacake today and was in heaven. I',m currently sipping a Bailey's watered down as otherwise the alcohol tastes too strong....small pleasures appreciated. 

  • I had 2 out, front bottom and now have a small false palate. I'e g t used to it but had a toothless bottom smile for some time. We also now get prescription only toothpaste, it' high fluoide as the treatment can kill the saliva glands......its not too bad the.

     

  • I've fed at the table, in a music festival, in a bar, on an aeroplane, on a beach, lots of places. It was either that or go nowhere. I had o intention of his ga toilet urgh. Most people don't notice as they are busy getting on with their own lives. 

  • Sorry to hear that you are feeling nausea and the mucus. For me those where the worldwide affects, night after night gagging and vomiting. The mucus and nausea lasted weeks too I'm sorry to say. The mucus protects your throat as its healing. Get plenty of sick bowls for  the hospital, I had one next to me permanently, day and night. It does eventually pass though. I was exhausted with it as hardly slept hrough that phase. I wish this passes quickly. 

  • Hi John... As I said before I am a nurse... Many drugs are now used for what I think of as off prescription ie for a purpose other than that which they are made for... For example I take a dug called gabapentin for nerve pain after a back injury.. Helps my mouth too... But it was designed for the treatment of epilepsy... So you take that haloperidol if it helps.... You are curable ... Don't you worry about it... It's a good drug.... Helps you sleep too...xxxx Paula....

    Ps I'm going to hospital tomorrow to have six teeth out.... Better than eight... Lol..

     

  • Thanks Kathleen, I've not actually been sick, but continually filling tissues with mucus, particularly on the rare occasions I've left the house, is trying my patience. Reading other peoples experiences, it seems this could last anything from four weeks to six months plus. I pray it is closer to the former.

    John

  • Hi Paula, thanks for the reassurance. I start taking the medicine tonight and hope it does indeed also help with sleep: The novelty of watching Bullseye, McGiver or doing a jigsaw at 3.00 am , is wearing thin. 

    I really feel for you and the dental work you have had to have done. How did it go? On the bright side, assuming you kept the teeth, you would have a great dowry in Papua New Guinea.

    Best wishes

    John

  • John

    you are on the way up but it’s a much slower ride than the one down

    i had a lot of mucus but got a portable inhaler machine that I used for 30 mis in the morning and 30 mins last thing at night ..... it worked for me and broke things down a bit

    make a point of getting those fluids in .... little and often if it’s making you sick

    otherwise it’s back to hospital for a few days

    ii also found carbonated water helped break it down .... be careful though it can just catch you at the back of the throat at first ... little and often though

    be assured I know it does not feel like it but you are on the way up ..... things with start to improve over the next 2-4 weeks but very slowly..... I finished my treatment 15th August and it was my aim to be able to eat Christmas dinner .... I just about got there but everybody had opened their presents by the time I had finished .... my big present to me was just to be able to finish my dinner

    vatch