Hi everyone
We’ve had a bad few days starting with Ken’s PEG Tube falling out and no one knowing how to put one in for 7 hours!!
Anyway that crisis has now been resolved but Ken is really suffering with a dry mouth. The stringy mucous stuff that was choking him and making him gag has gone, only to be replaced by a mouth as dry as the desert!
Ive found an NHS Trust care leaflet for H&N cancer patients that suggests a nebuliser with saline solution. We’ve never been offered this. Should we ask for one? Who would give us one? Has anyone used one? And if so, does it work?
Also, while I’m here......how do we instigate acupuncture or are we trying to run before we can walk? Ken is just over 4 weeks post 30 radio treatments and 6 chemo sessions.
We have XyliMelts (but he can’t use them right now as there’s no saliva to make it stick) and Caphosol. We also have Glandosane synthetic saliva spray but we were told not to use it due to its acidity and effect on Ken’s remaining teeth. I’ve tested it and it’s PH 5.5. Should he use it? And what about Biotene mouthwash?
As ever, grateful for your thoughts and experiences. Apologies for so many questions. Xx
We bought a humidifier off Amazon for about £20 and some essential oils to make it smell nice. It’s called 1 by One Cool Mist Humidifier. We bought the 2.8l one and wish we’d bought the smaller one which is even cheaper. It actually looks nice and has a light on it that changes colour so ideal for a night light.
I find that when we use it though, the house smells damp. Hubby has only used it about 4 times but his dryness is getting worse so he may start to use it more. We always have wet washing on radiators too!
We were advised to do a hot steam before going to bed which Ken did find useful for about a week.
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
Grrrrr why is there so much inconsistency!!??
i get Duraphat on repeat from GP. Just never thought of asking for Bioxtra.
anyway some caphasol on the way to WW tomorrow at least
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Yes I get Duraphat 5000 on px and Gelclair. Biotene & saliva spray Orthana.
My consultant said calphasol wasn't good as not proven so told me (strongly!!) not to buy & didn't prescribe. But I know all clinics/ consultants like different things & depends on individual what works. Let me know if calphasol good!!!
Tina x
We're private - no other option but the dentist is good so I don't really mind.
Anyway - private prescriptions can be cheaper than NHS if you're prescribed something that costs less than the NHS prescription charge. I also find that private Px are cheaper at Tesco than Boots.
Just a thought and worthy checking.
Hi Tina
likewise my consultant wouldn’t prescribe Capohsol either , all I got was a saline solution to gargle with
.ai know lots who swear by caphosol but like you say they are all different .
Hazel xx
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 I was told not to used any essential oils has they can irritate the throat so I didn’t . Just a thought
Hazel xx
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 Sharon
Why did you wish you'd got the smaller one out of interest? There's lots of choice - I've just looked on Amazon, thanks for the tip.
Our consultant thinks that steam inhalation makes the symptoms worse, but as we all know, there is a lot of inconsistency amongst our esteemed oncologists!!
Pip
Just checking you’re not paying for any prescriptions? You should have a 5 year medical exemption card?
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
We're just off out (to make our wills) but I can post a photo when I get back if that helps?
The bigger size just isn’t necessary and is very big! I suppose it means the water doesn’t need filling up as much though.
Id get the smaller one if I was buying again.
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
Pip
i used to stick my head over a bowl of steam with a towel round my head and it did help me. Added a little Olbas oil.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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