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.

  • Hi Vatch, hope all goes well at hospital - keep us posted.

    The nhs in my area does provide free gym facilities, but I haven't felt well enough to check them out..

    Cancelled last Thursday's consultant meeting - runny nose - and not due to go back until 15/3. However, I have not taken enough fluids on board the last couple of days - permanent nausea. If nothing changes over the weekend I will have to ring the nurse on Monday and fess up. I can see me being reaquainted with a drip and saying hello to a feeding tube. Not what I wanted, but I need to stop losing weight.

    Strangely, I too was called beanpole at school - I was ten stone wringing wet when I got married. 42 years of home cooking changed that. I'm impressed with the physical exercise you can manage. Knee replacements, arthritis and bad behaviour mean that at 63 my movement is more restricted. But who knows what I will be able to do having shed three stones.

    All the best

    John

  • Hi John.. No gowns for me naked from the waist up with a pillow case for modesty! Lol.... Straight on the metal table... Cold!....i hope you start feeling better soon... My feeding tube is being a pain at the moment! Literally... Lol

  • Ah. Dignity and survival are two words at opposite ends of the scale

    john, so if you medical team can give you anything to stop the nausea, liquid based if possible ... I know how you feel about getting food inside you .... I quit enjoyed not eating and could have got used to it ... but I made myself realise that that was wrong .... I needed to eat ... and after a few sessions in hospital it was the thing the made me force feed myself ... I had had enough of hospitals at that point

    keep going john and a good 20 minute walk will work wonders, perhaps not in the weather we are having at the moment though

    paula cant you put a towel down on the table first, I just had paper on mine but as the treatment went on and I started to feel the cold they put a blanket over part of me

    hang in ther all

    vatch

  • Paula, you'd have been a welcome addition at my hospital, where there were up to 20 people - most of whom chose not to go commando - in the radiotherapy waiting room!  Sorry to hear your feeding tube is giving you grief - I'm feeling better today and taking more fluid, so hope to avoid tube route. 

    One other thing, whem you go for chemo, try to get a chair on its own, as opposed to one directly next to another. Otherwise you run the risk of spending eight hours next to somebody you cannot escape from.

    Have you had times for next week yet?

    John

  • Vatch,

    I'm registered disabled - knee replacements never worked - so twenty yards is as good as it gets. New knees due in 2020, so hoping for a better result. 

    I am very keen to eat and hope that over the next week there will be a light bulb breakthrough moment. If there is not, I will hand myself in to the tube police.

    All the best

    J.

  • Good advice John...i usually do try to sit alone and five plus hours is a long time to sit next to someone you don't know! My plan is to sleep and my nurse said she will curtain me off if I want to! Which is excellent....xxxx glad you are feeling a bit better... The tube is a real pain in the *** for me at the moment but I'm sure it will settle so if you have to don't let me put you off the tube is ok it's the hiccup with my liver poke that has caused issue and is very rare....xx tube route if you have to...xxx

  • John

    gosh you have a lot going on I hope it all starts to pick up soon for you

    As for the people you meet in this experience I met some wonderful people whilst in my treatment especially if you have your 30 radiation treatment at a set time, chances are that so do others and those you meet in the waiting room on your first couple of appointments, you are going to meet going forward

    then come the dinamic of people you meet leaving as they are a head of you in their treatment and as you go through your six weeks new people will join

    i loved to people watch during this period and as my treatment progressed and my voice went my wife did all the talking with the new and the partners of the older 

    I remember I was about about 4 weeks in I had little or no voice and was just about full time on the peg a new patient had had a few treatments walked in sat down and mused on the fact that he was finding the treatment easy and loved his bacon sandwich he had had earlier that day. I said to my sister who took me in on Thursdays ... I bet this guy isn’t like this next week .... and surely enough 7 days later the guy came in sat down and never said a word

    so Paula I would not worry about having to chat to someone .... do you know what chemo you are having ... mine was an 8 hour stint ... those were long days so get loads of films on your iPad. Even in chemo you might find you are the only in there for long days, where as people will come in for breast cancer treatment, put on the cooling cap, have their treatment and be gone in two hours ... usually these people came in with someone, whereas I just got one of my friends to drop me off in the morning and my wife and kids would come pick me up and take me to Tomotherapy late in the afternoon .... no point in my wife sitting there all day Talking to me when I could not talk back ... boring day for her 

    i hope the peg starts to get a bit more comfortable for you

    vatch

     

  • Vatch

    My 25 radiotherapy treatments were at different times and I was usually in and out pretty quickly, so even if I'd wanted to talk to somebody, there was not a lot of opportunity. Also, most people were accompanied, whilst I travelled to and attended sessions on my own - my choice. Each to their own I guess.

    Like you, my chemo sessions - which were supposed to last five hours - took up to eight. There was usually another drip or two added and two of my five sessions lasted eight hours. This made planning sometimes difficult for people reliant on others for transport.

    Paula, don't forget to take your tablet at least one hour before chemo treatment - I did once and it just adds an hour to your time in the chair. 

    John

  • Paula 

    hows things going with you ..... ok I hope

    vatch

  • John

    hows life with you. I hope the sickness has improved and that you are on the way up

    vatch