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.
breaking my heart.
Hi
God, I fee so sorry for you both. She must be in agony but like you write, she isn't helping herself. It has to be said that it feels like she knows she isn't going to pull through this and has given up.
RIGs or PEGs (similar) are fairly routine with our treatment and take a week or two to settle down, but they have to be looked after. Your mum's is likely to be a lot longer I'm afraid because it does sound like it's infected. Buscopan helps the cramps. Is she on morphine? Is she taking laxatives to counteract the constipation it causes?
For radiation burns ask for Flamazine cream. If the skin is open there is a dressing called Polymem that should draw all the fluid out and help it heal. It should be better in a week or so.
The tongue ulcer is going to take months to heal. What mouth rinses has she got? Gelclair, Caphosol are the usual ones but they all need to be used to help her along. Difflam is a good anaesthetic before she eats but if it's hurting her you can dilute it a little. Ask if she might have thrush in her mouth, which is common and complicates matters even further.
She might benefit from some counselling, which Macmillan offer free, but I suppose she wouldn't entertain that.
Sorry I've probably stepped out of line with too many suppositions and I apologise but you have my heartfelt sympathy for what must be a horrendously difficult situation
Best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi I can only repeat everything Dani has said. I was 61 when diagnosed just wanted to say so sorry about how your mum is but dull6 understand her decisions. That’s not to say it’s hard for all of you the ulcers will plague her the salt rinse if you can get her to try them will help but I think you’ll struggle with that. If she can swallow get her to have 6-8 of the fortisip s every day but needs laxido or movicol for constipation as morphine will guve her that. Buscopan should help with the tummy wind. The rig will settle but takes time.
Hugs 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
Hi sounds like you have all been through a horrendous time.
I had problems with my feeding tube - initially it was put in too tight and got infected. Then I had antibiotics to clear up the infection, but it was very sore. I found that sudacrem helped with the soreness. It took about 2 weeks for it all to settle, once it wasn’t so tight and I’d had the antibiotics. It would really help your mum to get this sorted as it must be very sore to drink with ulcers.
As regards the mouth washes - I found the same as your mum - it’s very hard to rinse when your mouth is so sore, as it makes you gag and feel sick. I probably didn’t do it as much as I should have done but I kept a bicarb and salt wash in a water bottle in the bathroom so if I could manage it I rinsed.
I also used sudacrem on my neck but it was burnt and sore with scabs in places. Again, it’s just a time thing, it gets better but it hurts and is sore.
The treatment is horrible for everyone / those going through it and those caring, you all need to be kind to each other and get as much rest as you can.
My partner - now not together - thought I wasn’t doing enough for myself and maybe I could have done more, but I was in terrible pain and discomfort and I felt so wiped out it was very difficult.
I hope your mum gets help from the hospital with her feeding tube - this will make a big difference to her recovery as without food it’s very easy to become weak and lose the fight to try everything to make yourself better.
Lots of luck to you all - you are a fabulous daughter to have her living with you - that will be really helping her recovery to have you supporting her.
Rachel
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