100 steps back in recovery?

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Hi all

My mum finished her 6 weeks of radiotherapy/chemo on 6th June. Spent a lot of time in hospital due to various infections (mainly RIG related) she did well throughout, eating drinking etc, then had to start using the rig from week 3 after treatment for a couple of weeks before she then tried soft foods again (soups, fish pie eggs mainly) but the last week or 10 days or so it's like he'd throat has closed up and she can't swallow, getting water down is difficult. She saw the dietician and speech and language therapist last week who said it was probably thrush and she got medicine for that but it's still not improving. 

I'm wondering if anyone else has experienced a big set back like this? It's really knocked her as she's desperate to get rid of the tube! 

She was told to go to A&E tomorrow morning so they can get a tube down but I thought I would ask on here in the meantime to see if anyone can offer any words of wisdom or encouragement. 

Obviously her first thought is the cancer is back with a vengeance which obviously won't help her throat if she's anxious!

Thank you all. X

  • Hi.. We do get setbacks like this. Has she got a really sticky throat? Lots of us get mucous that gums our throats up. 

    Is there no alternative to A&E? Can she not see her ENT? Have you tried her CNS?

    Dani 

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

    I BLOGGED MY TREATMENT 

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  • It is a very difficult treatment, things can set us back, thrush and feeding tube infections are common and cause distress. Your Mum may be admitted to a ward for investigation and treatment, which should reassure her/lessen anxiety.

    Getting rid of the tube usually only happens when oncology is certain that we can maintain a healthy weight without it.

    Still early days in the recovery process.

    Micky

  • She says she's not in any pain at all now,it's just this feeling like everything is getting stuck and coming back up, water has become difficult and she's been able to drink that throughout. She's not mentioned that it feels sticky, the thick mucus only lasted a few days with her and she's not had that for a while now I don't think. 

    She spok to the team today as they were all on the call,they suggested A&E to her because there is no emergency appointment system for ENT? The team were going home as she was their last call if the day hence why they suggested tomorrow morning so that the team would be available once she's gone through the A&E system. i was unsure why they suggested A&E, but that's what she was told.

    I'm wondering if anxiety could cause these issues? I think the fear of choking after trying solids a few times quite rightly scared her and now possibly expecting to choke each time which then causes her throat to close even more? Who knows. 

    She did have a camera down about 2 weeks ago, but it was only  for a few second's and they did say it was still very swollen inside. 

    Hopefully it's just an unfortunate set back and after reassurance tomorrow she will feel better about things. 

    Thank you for taking the time as always. X

  • I've suggested she pack a bag just in case. 

    She's certainly hated the RIG with a passion, Although it's definitely saving her life at the moment! I think she will have a RIG burning ceremony once it's finally removed! Grimacing

    Thanks for your reply and time Blush

  • I always kept an overnight bag in the  car when going for chemoradiotherapy sessions, sure enough on the second last treatment I was admitted straight to the cancer ward for a few days, observation, constipation issues and pain management.

    Micky