Hit a wall today

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T4 - base of tongue

Last radio session tomorrow - which I think I'm  going to cancel. The damage caused by the radio to my tongue just seems to be mounting each day. Today, I  could barely drink and was unable to eat because of something digging into my throat now when I swallow. (even the Nutrisip drinks). Feels like I've got half a peanut shell stick somewhere. This has happened a few times, but not for so long. - has been getting worse as the radio has progressed. 

Oncologist says it's "normal" - everyone feels something like this. Is this correct?? Another.consultant has had a look with an endoscope - but only at the surgical site I think - and couldn't see anything

I suspect I'll have to ask for a tube tomorrow, but apparently it can't be done at short notice, and once in, it's there for 8 weeks. (I suspect this is a nasal tube into the form not the stomach)?.

Anyone got any experience of these issues?

  • I had the same treatment , I had a feed tube fitted to enable me to eat as it became impossible, I lost a great deal of weight so the line direct to my stomach was a life saver . 

  • Spot on. The radiation annihilates the sensitive tissue in your throat. That’s why so many trusts put in a feeding tube before you start or a nasogastric tube when you need it. I had one in week 4 and it was in once for eight weeks. It saved my life. 
    The rotten news is that RT continues to have an effect and symptoms ramp up for two to three weeks after treatment ends. So there is no point in missing your last session. Get that NG in. It sounds like you really need it. 
    What pain killers are you taking? 

    Dani 

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

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

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  • Hi as Dani says no point in missing last treatment. The plans are worked specifically for you. Plus you’ll continue tj feel worse for next few weeks I do know ipeople who had ng tube put in after treatment had finished. Ask tomorrow for ng tube it will help you mine was in for  last 3 weeks iof treatment and first 3 of recovery it was my lifesaver. All my feed’s nutrition hydration went in and left me free to concentrate on recovery. 

    beat wishes 

    Hazel 

    Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo  3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life. 
    No questions too daft to ask. 

    I’m also an ambassador for https://oraclehnc.org.uk/
    A leading head and neck cancer charity. 

    This is a link to a webinar i did with Oracle explaining the process of diagnosis. 

  • If it's a nasogastric (NG) tube you are talking about, they can be put in at very short notice and there's no minimum time they need to stay in for. Can be done by doctors or nurses as long as they've done the training. The length of time the tube stays in depends on how well you are swallowing food and drink. If you find you are managing ok they can be removed. I had one in for a few days when I had some swallowing issues after an op. PEG feeding is a different matter which I know very little about. 

  • This is unfortunately normal for many of us...tough treatment...but it will pass...the recovery is often the toughest to endure...I had a PEG feeding tube in place for a good few weeks...

    Michael

  • I suspect I'll have to ask for a tube tomorrow,

    Do it! You’ve a long way to go yet. 
    Good luck.

    Dani 

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

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

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  • Sounds about right.  You have done well to eat for so long.  I too struggled through to the last day still eating then had to go onto the tube (I had a PEG in already).  I do remember lying on the RT table for an extended period in that last week whilst they consulted on if it was safe to continue treatment; and half of me wishing for it to stop and the other half saying that you've got so far just do it!  I did it and glad I gave it my best shot.  Hope all works out OK for you on your last day of treatment.  Just hang on in there during the first few weeks of recovery.  It does get better.

    Peter
    See my profile for more details of my convoluted journey
  • Hi, I'm certainly thinking of you and hope that you have had or will have your last treatment. I remember the side effects only too well. One of the hospital team described the effects of the treatment as brutal and I can't argue with that. I had a PEG fitted in my stomach approx week three of the treatment but other than flushing it with water and regular cleaning I only started to depend on it at the fifth week as swallowing then became really painful. I then continued to depend on it until two weeks after the treatment finished and swallowing started to become easier although chewing remained a problem for a while due to the lack of saliva. A glass of water was never far away. The only plus side for me was being able to put the Nutrisip drinks in the tube as I hated the sweetness and thickness of it when drinking it. 

    The end of this week is my two year anniversary of finishing the treatment and happy to say that everything is good. I can still remember the relief when the mask was unclipped for the last time and how emotional I was walking out of the radiology department. It was a blummin awful experience at the time but I'm now so grateful for the treatment, care and support I received. Hopefully the trauma you are going through will be for a short while only but please bear with it.

    My very best wishes to you

  • Many thanks for all your replies.

    I had the final radio sessions finishing yesterday and am just off now to get a NJ tube fitted - it's just become too painful to guarantee enough water in particular.

    Hopefully will only need this a few days - though apparently might not be easy to sort out removal for 2 weeks... the home support for tubes in East Kent seems beset by logistics problems...

  • Hopefully will only need this a few days - though apparently might not be easy to sort out removal for 2 weeks... the home support for tubes in East Kent seems beset by logistics problems...

    Can your GP nurse take it out? It’s not attached anywhere except with a bit of sticky tape after all. I vomited mine up so just pulled it out through my nose. 

    Dani 

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

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

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