22 weeks ago today

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22 weeks ago today I started treatment.  6 weeks of RT (64.8 Gy) and 5 weeks of Carboplatin.  I had the PET scan at 3 months post treatment and received the news of Complete Metabolic Response a week later.

For me Treatment was Brutal and Recovery was Torture.  However, last week I went away to help a friend run a conference.  I started the week eating pasta salad in my room as I was still having difficulty swallowing and felt uncomfortable eating in public.  By the end of the week I was on a sneaky G&T and devouring a 3 course meal of pate with toasted brioche, braised steak on mash with braised carrots (gallons of gravy) and then sticky toffee pudding - all in the restaurant.  The only downside was I lost taste suddenly whilst eating the sticky toffee.  I know that is par for the course, but I was enjoying it!

Finally I rounded of the week with fish and chips and a beer; just to check my eating was not a fluke.  I had planned to leave half for the next day, but oops it all went down Blush

For all those struggling there is hope.  We may not all see the sudden change I saw last week, but even a slow and gradual change is good.

  • Fantastic to read this. My husband has first meeting with treatment planning team tomorrow and today I m feeling very down about prospect of the treatment and the recovery following it. He has Hpv16 positive cancer of tongue. Reading your post has given me hope there is light at end of tunnel. Thank you 

  • Hi Peter, as you know I'm about a week behind you.. I too have been out for meals, and dry mouth is my only issue.. I have to have plenty to drink to help with swallowing my food, so plenty of coffee with my meals otherwise i'd be hammered by the time I finished Innocent.. Yes, there is a light at the end of the tunnel, and it is very bright.. so if you're going through treatment atm, keep this in mind, and take each day at a time.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi Peter 

    Well done.... not easy for us to eat in public spaces....I am eating pretty well but still self conscious about the time I take and my liquid needs.... things do improve.... it's important that patients and carers realise this.....

    Take care and best of luck 

    Peter E

  • Hi Peter, thank you, this is so encouraging to read. I too have become aware of how much longer I take to eat a meal when dining out with me having to take constant sips of water and chewing well ( which is a good thing). Fortunately, I don’t have a sweet tooth so  I just suggest that others can go ahead and order their dessert whilst I continue to enjoy my food. I’m just happy to be able to eat normally againGrinning.

    - John

  • I find that warm tea or milky coffee works well as a saliva replacement when eating.  Water does not seem so effective.  It looks a bit crass a mouthful of food followed immediately by a swig of tea before chewing and swallowing, but needs must Rofl

    See my profile for more details of my convoluted journey