Sorry! Entirely trivial question about exercise and nutrition

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First of all it may help those of you who are just beginning treatment to know that I am 20 months post treatment for base of tongue cancer. Treatment consisted of 35 rounds of radiotherapy, 5 out of 6 chemotherapy sessions and a neck dissection. Plus a tonsillectomy in the course of searching for the origin, a stomach feeding tube during treatment and various other indignities which I won’t go into here.

And…I am well! So well that I’ve signed up to do a MacMillan Mighty Hike next week. Only 15 miles admittedly but it will be a challenge for me at the great age of 63 and having always been averse to exercise.

I can cope with the dry mouth issue with the help of Zylimelts, gum and a camelback (plus the walk is in Wales so hoping and assuming it won’t be hot :)

But I’m wondering about snacks to keep energy levels up. Everything seems to contain loads of sugar as I suppose that’s what gives you the energy. At the moment this is a one off so I guess it’s not critical if I have a few jelly babies without being able to clean my teeth properly. But strangely the whole experience of treatment and doing the limited training I’ve done for this event has inspired me to keep going. I’d like to do more long distance walks, cycle rides etc. Pre treatment I would have taken chocolate bars, flapjacks etc to give me a boost but these now seem like dental Armageddon. So those of you who run marathons or go on mega cycle rides (eg Hazel), what would you recommend if anything? Thanks.

  • I would take anything you always would plus a toothpick, a bottle of water and some fluoride mouthwash. Eat, pick, flush and final rinse. 
    I suppose you could always take Fortisips and a straw Wink

    By the way, Nicky  How lovely  to hear how well you are. Brilliant 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi. Great you’re embracing exercise well done. I use a camelback fir hydration if it’s long bike ride an ensure is always  in my bag actually I quite enjoy one. Plus good old trusty banana s they give a decent energy hit. Have porridge with honey for breakfast again slow release energy. Small bottle of mouth wash to rinse and spit out plus a toothpick . Otherwise carry on as normal. 
    well done snd so good to hear from you gives others hope that are just starting out. 
    plud not a trivial question at all it’s a good reminder of oral health care it never stops. 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Good luck with Mighty Hike Knitty and hope it all goes well for you and in future events maybe, i cannot eat solid food but i know there are all sorts of energy bars and drinks, sound advice from Dani and Hazell. All the best.

                                                                                                      Chris x

    Its sometimes not easy but its worth it ! 

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  • I'm 6 weeks post treatment, I'm doing 2 hour cycle rides and weight training. I'm still 10 kg underwieght. I have fatigue, still cant eat properly and tommorrow I'm doing the fan dance at Pen Y Fan. Just make sure you take whatever shakes and food you need and plenty of water. I'd be looking at around 2 litres minimum. Have you tried energy gels to keep you fuelled during the event?

    I'm a 52 year old  Personal Trainer by the way 

    T4 N2 M0 left oropharyyngeal SCC(grade 3, p16 positive)

  • Good for you Knitty! Great to hear you’re doing well. I would also take plenty of sugar free chewing gum. This will help keep your teeth clean after eating all those jelly babies! My go-to energy source on hikes is liquorice comfits, which are probably worse even than jelly babies. Good luck with the trek.  Who’d have thought it 20 months ago! 

  • Hi just be careful with the high energy gels  as our teeth are very susceptible to decay and unless you’re in a position to brush and rinse they might be best used for short intensive workouts as opposed to a long hike. I’ve used them for short bike rides prior to treatment when I needed a boost up the hills but would  be reluctant now given how fragile our teeth can be to decay. Just my thoughts of course.

    Hazel xx 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • It’s a lifetime battle to keep our teeth. I keep sugar out of it unless it’s part of a meal and my phone alarm gets set for 30 minutes later 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • This is what living with cancer looks like over the last 3 days. Adapting how I took my Fortisip drinks, accepting that I'm a tadge slower and going for it.
    Getting physical is my remedy for cancer it’s a case of 'keep moving.' The body is made for movement; without it, muscles shrink and weakness sets in which wouldn't be good for the mental health.

    T4 N2 M0 left oropharyngeal SCC (grade 3, p16)

  • Great that you are getting on with your life as it was before you got cancer. That's what all the support here is about. It's about us doing what we always did. For me my addiction is bees...probably a darn sight more addictive than exercise. My Husband used to be in Mountain Rescue...now he has to rescue my head from inside a beehive. I have a friend who is a foodie...she lost half her tongue and has fought tooth and nail to regain her previous life. She has. The fight has been hard but worth it. 

    So I'd like to take this opportunity to raise a glass to all the folk here who live their lives after cancer the best way they can.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Lee  Yes the endorphins you get do help my first achieve  after treatment was 8 km cycle rife in Spain week 8 of recovery. I too get my pleasure in cycling I also derive as much pleasure from my allotment which is a slower pace but just as enjoyable. I’ve a close friend whose business was almost ruined by cancer she has a dog grooming business week 6 she started to slowly build her business back up  she did it. There is a good life to be had after cancer.
    My husband and I have always had this motto One life live it he worked 40 years underground in a coal mine and just after his retirement I got my diagnosis for a nano second our world fell apart but I pulled myself together and went for with it. Many people think why did I fly to Spain  week 8 it was Johns 60th birthday I wasn’t missing that and I wasn’t letting him miss it at our apartment. 

    To everyone out there treatments hard but there’s light at the end of the tunnel some reach it quicker than others but the majority of us do get there. We’ve been given a 2 nd chance head and neck cancers do respond extremely well to treatment. Not everyone is as lucky as we are .

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help