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Squamous Cell Carcinoma of the Tonsil.

John54
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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.

  • Offline in reply to LynneM

    Would be good to meet.... If you ever come to NZ come stay with us... And if I get home again I'll definitely come see you in Scotland...xxx

  • Offline in reply to paulaw68

    Hi Lynne, Paula, Vatch.

    Reading your experiences just confirms that everyone is going to react differently to the treatment and recovery.

    Paula, you are doing brilliantly. I found hunger an issue, but eventually pretty much forgot about it. My last solid food was Christmas Day and so long as I cannot taste the fortijuice, all is ok. That said, I have now lost over four stones and know that if I am not eating something solidish by the end of thid week, then I suspect a tube beacons. 

    Lynne, I feel for you - you are going through the mill. Like you, I had a major problem with mucus. This started easing about six weeks after the end of treatment. It is now only an issue first thing in the morning and mouthwashing with warm water sorts the problem out. Like you , I had troubled sleeping. I seemed to end up watching rubbish antipodean soaps in the middle of the night. I trust we have returned the compliament.

    Vatch, do you have any alcohol? Not desperate for a drink, but would not like to think I've had my last.

    We all seem to have a pragmatic approach, so let's continue to treat each day that goes past, as being one nearer to some answers.

    Please all put Sutton Coldfield down on your places to visit - be great to put some faces to the words.

    John

  • Offline in reply to LynneM

    Lynne

    we are all different in this process, john can tell you where he is in his recovery journey on food

    as for me, I finished my last treatment and my goal was to be able to eat my Christmas dinner and I just got there....it took me a long time to finish it, but I did it

    you might also find that your taste does change, some foods you will have trouble getting down .... bread, cheese and the like .... but nothing a glass of liquid can’t get down

    you May also find that what you liked before you don’t now and visa versa

    your taste should start to come back about 6 weeks after treatment and you should find this increases slightly, but can take some time to come back ....to an acceptable state

    but all that is to come, for now get through this week and you are on the slow up slope

    vatch

  • Offline in reply to paulaw68

    Paula

    there are a few of us meeting up in Scotland next year ... if anyone is interested

    vatch

  • Offline in reply to John54

    John

    good to hear from you and sorry to hear the weight is on the slide

    Oh yes I’m fine with alcohol ..... and I’m finding delight in going for the stronger and darker tasting milds or porters ..... 

    it was a good six months though before I could really have a drink and properly enjoy the taste of it.

    Sutton Coldfield is on the radar

    i do hope it starts to pick up for you soon john

    vatch

  • Offline
    Hi John. Apologies for the late reply. I hope this message finds you in good spirits. I finished treatment for this cancer 29/march/17....35 daily sessions of radiotherapy (mon - fri) and 6 weekly sessions of chemo. Lost all taste in the second week. The doctors urged me to eat and drink anything with a high calorie content as loss of weight would mean my mask would no longer fit and the treatment plan would have to be changed. I forced down the fortisips and came around to boiled eggs with toast smothered in butter followed by weetabix with warm milk and a chocolate flake crumbled in for added calories. It worked for the duration of treatment. Came home and followed this diet for months with fortisips and scandishakes. I stopped taking these last xmas as the weight was shooting up. A year later and I would guess my taste is about 30-40%. Sweet foods/chocs etc. taste salty. Maybe it's not a bad thing considering my teeth need that extra tlc following treatment. Most of the foods I enjoyed are no longer appetising to me, take aways included. Soft cereals, ready brek porridge,fish...smoked haddock,boiled eggs, pastas with various sauces, barbecued chicken wings, boiled ribs and stews are keeping me somewhat stable at the moment. How's your throat? Still sore? This will pass although it feels like forever. Has fatigue kicked in? I hope you're one of the lucky ones that are not affected by it. If you are, do not despair. This too will pass, although may take anything up to 2 years post treatment. Sorry if that's a bit of a blow. It certainly was to me, but at least you'll know to expect it. All I can add is that recovery cannot be measured in days or weeks but rather months. This time next year you'll be wondering what all the fuss was about. Take your time and don't beat yourself up when you don't feel like eating or you're to tired to do what used to seem so easy. You've been through the ringer. You will recover and you'll find your "new normal" eventually. Raising an ice cold glass of water to you and your continued recovery. Take care.
  • Offline in reply to markone

    Mark

    glad to hear you’ve come through this and I resonate with the new normal

    chocolate and sweet thing are a no no for me and to be honest I have gone off of the taste

    keep on going though and well done

    vatch

  • Offline in reply to LynneM

    So lynne

    hows it going.

    over the half way mark and on your way to the end

    vatch

  • Offline in reply to paulaw68

    Hi paula

    hows things with you?

    on the hom3 straight now ... and doing ok I hope

    vatch

  • Offline in reply to John54

    Hi john

    hows things ... getting slightly better I hope

     

    vatch

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