RIG being fitted on Monday

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Hi All - quick update:

Finished wk2 Yay!! Losing taste (or changing taste) by the day - Boo!!. Still eating though and I'm about to have a fillet steak (maybe the last in a while...?) .

Despite a sore mouth (left side, mainly gums) and feeling a 'prickle' towards back of mouth and throat, I'm still swallowing okay so will continue to shovel in the food. Prefer coffee to tea and stronger tasting food/drink in general is much better. Moved to crumpets, bread turns into chewing gum as saliva dries up! Avocado still tastes like avocado Slight smileChocolate is getting bland, but ice cream still tastes good. Diet Coke or Lucozade taste okay too.  

After WAY much to-ing and fro-ing - my oncologist and team freed up a bed to get a RIG put in this coming Monday. Staying overnight and arranged RT around it. Not looking forward to it at all but nothing I can do and I may have to rely on it as so many others have,  so better get on with it.

Helen x

  • Hi Helen. Prickly throat is what I had to start. Fingers crossed it doesn’t get much worse. Good luck with the RIG. At least you’ll be air conditioned Wink

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Hi Helen. Good luck from me we’re home after a fab week in Wales. I waved at the end of the A55 this afternoon after visiting Bodnant. Make sure you’ve got sufficient painkillers and movicol or laxido as well. 
    yes prickly throat was my first inkling things were changing. 
    keep in touch. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • I love Bodnant - probably my favourite heritage garden. Hope to get there in the coming weeks for a picnic, it's very close to where we have a static caravan.

    Good point - I've got laxido sachets. I'll get 'proper' painkillers this week (Tuesday, I have a review with my radiologist). My oncologist said they'll give me some codeine (or co-codamol), some oramorph and also some liquid paracetamol. I have some codeine left over from my tonsillectomy in case I need anything before Tuesday. The nurse said I'd get pain relief on Monday anyway for the RIG procedure, will be nil by mouth Monday so will have a drip for fluids.

    Helen x

  • Hi Helen we did that yesterday went to the winter garden part was shady and sat on a bench contemplating life. You’re not by chance at Maewen Abbey site are you ?if we decide that’s the way  for us it’s one we were looking at. Will be thinking of you tomorrow 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Ah the lovely laburnum! It's gorgeous there isn't it! No, we're on the Abergele coast, so about 20 mins drive. There will be some nice sites inland near there though.

    When I went for my chemo on day 1, martin dropped me off then went for a ride from the caravan up towards Llandudno, then inland to Llanrwst and back down passing Bodnant (65km). He was very pleased with himself, got some Strava kudos!

    Glad you had a lovely time and you certainly got the weather Smiley

  • I love Bodnant - probably my favourite heritage garden. Hope to get there in the coming weeks for a picnic, it's very close to where we have a static caravan.

    Stan and I always stop there on the way ( and back) to Conwy Honey Fair. 
    Been making blackcurrant lavender and honey jam for there and I’ll get cracking with candles shortly 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi. I had a PEG fitted before treatment. I didn’t want it & couldn’t see why it was a condition of having treatment. 
    Week 4 of treatment I couldn’t eat orally anymore. Night feeds via the PEG were life savers. 
    All the best to you. 

  • Hi Helen Just checking in on you how are you hope not too uncomfortable the heat won’t be helping. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Is a RIG a feeding tube????  Are they fairly common in throat cancers? You're sounding quite buoyant about it all,  Good luck, keep going, hopefully I'll be just a few weeks behind you.

    I have my Oncology appointment tomorrow. 50% relieved and 50% sick with anxiety. Will at last get all the test results though.

    It's been 39 degrees here this afternoon, Eastbourne. Hope it cools down must be tough.

    Pauline

    Pauline

  • Is a RIG a feeding tube????  Are they fairly common in throat cancers?

    Yes it is and yes they are, though policies on fitting them differ from hospital. My first one was put in before treatment started as an "insurance policy," but some hospitals put them in reactively if and when needed.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/