My Mum - Oropharyngeal Cancer SCC

Hi all, I just needed a place to talk about my mum and her journey and hopefully get some advice if anyone can help with pointers. 

I’ll preface this by saying I ADORE my mum, she’s my only (involved) parent and always has been. We are best friends and also occasionally worst enemies, but I love her immensely and I’d do anything for her. That being said, she’s also her own worst enemy a lot of the time and that can make it incredibly hard to help her / convince or support her to access and/or accept the help she needs. 

So to summarise her journey so far;

October 2022 - Mum started with trouble swallowing, she had an endoscopy that showed nothing so the hospital basically said ‘it’s because you’re old and smoke’ and that was that. 

Fast forward 12 months, mums swallow got worse not better but as mentioned above, rather than helping herself (she lived alone) she just left it. My sister and I both have children and work full time and my brother has autism/Asperger’s, so our ability to support has always been stretched but we all do our best.

October 2023 - Mum started with a hoarse voice and coughing up blood, still didn’t make herself a doctor apt so my sister did and that’s when the ball started rolling. After endoscopies and biopsy Mum was diagnosed with stage 3/4 (not totally clear from her notes) throat cancer, beginning at the base of her tongue, spread to a single lymph node, vocal cords and part of her epiglottis. Treatment options weren’t great albeit grateful to have them.. 1) Do nothing, survival would be 3-6 months. 2) Radical complete glossectomy and laryngectomy followed by radiotherapy or 3) Radiotherapy on its own and hope for the best outcome, which we were told was 20-30% cure, 70-80% prolong her life but no real timescales I.e. maybe 6 months, maybe a year.
Mum went for option 3, fully supported by all of us. She moved in with me and my partner and toddler and we all vowed to do anything and everything to help her through this. 
The way it was explained to us is that normally they’d do 6 weeks of radio with 2 chemo rounds but because mum is so frail (63, was 6.5 stone as she hadn’t been able to eat properly for a year, and already has mobility issues) they decided on 4 weeks of radio and no chemo as she’d not tolerate it.
Before even starting the radio mum was meant to have a feeding tube (RIG) fitted and she had to have all her teeth removed due to the damage radio can cause to the jaw bone and all of her teeth being badly damaged from smoking. All her teeth were removed without tooo much bother thankfully but feeding tube has been awful from start to end. In order to place it she needed an NG tube which the first hospital messed up ridiculously, 7 attempts to pass it and on one attempt they irritated her lungs so the surgeon refused to do the procedure as she was coughing. Mum then refused to have it done except at the specialist cancer hospital so the wait for it there was ridiculously long, it ended up being booked for week 3 of her radiotherapy, ultimately postponed until her final day of radio ironically. In the meantime she ended up admitted for an NG tube for nourishment which they also managed to mess up a couple of times AND it fell out on 4 occasions, leading to her refusing to have it put back in (fair enough!). She also got a serious infection and ended up losing weight to the point of now being 6 stone. 
On Tuesday last week mum finally finished radiotherapy AND got the RIG fitted after a lot of battling as to whether she would even consent and now the RIG is causing her absolute agony. She was discharged the following day (against their better judgement) as she was basically threatening to walk out anyway. She would barely let them touch the RIG in hospital due to the pain and since we have been home she’s barely let me touch it to clean / rotate it etc. she also refuses to look at it herself so it’s all down to me and I feel like I’m failing miserably. Tonight I’ve noticed fresh bleeding and a smell so more than likely infected and I feel rotten, not as bad as she does but just fully like I’ve failed her. Hospital will see her at 9am thankfully. She also has horrific radiation burns on her neck and half of her tongue is one giant ulcer so she’s in agony anyway she won’t use the sodium chloride rinse as she says it’s too painful and is sparing with the difflam as I think it hurts her too. The only cream we have for her burns is Zeroveen and that’s not doing very much. 

she’s been refusing feed via the RIG so is now, agreeing to DRINK fortisips. Better late than never but I can’t help but feel gutted that if she had been willing to drink them previously she may have avoided the pain  

I‘m just hoping that someone on here may have some advice as to what I can ask for tomorrow around support with; 

1) skin / burns from the radiotherapy  

2) mouth ulcer treatment 

we should be getting district nurse support for her RIG but I don’t know if she will let them near it either. Did anyone else have this procedure and if so, how long before it stopped hurting? She cries in agony if it’s touched and it’s breaking my heart.