Sleep Problems Advice Needed

Hi Suzanne

T2N1M0 tonsil cancer HPV16+.... finished Chemoradio June 2023

I have had sleep problems intermittently throughout treatment and recovery, GP now  has me on low dose Zopiclone ...2-3 times a week.... guarantees me 6 hours unbroken sleep when taken....I have a 3 monthly appointment with oncology next week.... will bring up sleep issue then.

Oral thrush is annoying, very annoying.... I had three episodes during treatment/recovery....Prescription Nystatin cleared it up..

Take care

Peter

Alas it is normal for some.  I had no problems sleeping in the early days.  I am coming into my fifth week post CRT treatment and don't sleep at night due to dry mouth.  I certainly found both the nebuliser and humidifier helped with my dryness and mucus in early days, but not so much now.   As we heal things change.

Try a mix of 300ml water, 1 tsp bicarb and 1 tsp salt as a gargle for the mouth to help keep thrush etc at bay.  I know you currently have it, but it certainly helped me.

We are all different in how we react to this treatment, but the common factor is the time we need to give our bodies to heal.  You may find that suddenly the mucus goes almost overnight, mine did and it seemed to be closely linked to the throat ulcers starting to heal.

Thanks Peter, I’m taking fluconazole for the thrush which seems to be helping.

Thanks you for reply, is that Caphosol? I have it in individual ampules so I’m not sure actually what is in it.

i do have some throat ulcers which I never thought could be linked to the mucus. Hopefully both will clear soon. 

Hi Suzanne,

I really feel for you. I had this issue for the first 2 weeks after treatment and had to try to sleep sitting up. Like you I use a nebuliser up to 6 times a day and a humidifier in my bedroom at night. I was also prescribed Carbocisteine (Mucodene) early on in my treatment - it is a syrup that supposedly thins out the mucus. I have been through so many boxes of tissues. When I shower, I put my face in the water stream - that helps loosen the mucus too. Gt as much rest as you can - it is exhausting coughing this stuff up all the time.

Have you been in touch with your Specialist Nurse to ask for help and advice?

I am 5 weeks out of treatment and the mucus has only just started to get less, but I am feeling much better in myself every day. Hang on in there -I promise you it does get better.

Sending a hug. :-)

Thanks Debbie, I have a follow up with my nurse next week and will ask about the Carbocisteine. I’m never sure what’s normal with all this as everyone seems to have such a different experience and I’m never sure how much the nurse can help with.

Hi Suzanne,

in my experience my nurse sorted out all my medications and said she was there to help with anything - I asked her advice on quite a few occasions (mostly by email) and she always got back to me quickly.

Hi Suzanne all perfectly normal the next few weeks are hard the treatment continues to work. I slept sat up surrounded by pillows.  I was prescribed carbusistine to help thin the mucus. It will go as quickly as it appeared often to be replaced with dry mouth. Some days it’s 2 steps,forward one step back but you’ll getbthere un the end. Plus make sure yiure getting enough calories in and ata least z2-3 litres of water it’s hard but hubby used to put water in via ng tube for me as well as sipping it as I coukd. 
blog below might help

Hazel 

Thanks Hazel, I’m managing ok with the hydration I think but every day brings new challenges. Sleep deprivation seems to be the worst though.

You're welcome, it will get better. But yes agree the not sleeping is hard I napped a lot from memory on the sofa in the daytime. Inbetween feeding drinking oral stuff pain medication. Are you on top of pain meds I know I was still on oramorph and cocodomol up to week 10.  I could sip water in my sleep as time went in I have no idea how I did it but I did 

Hugs Hazel