I am so shocked reading this and don’t know how on Earth you’re coping with people who don’t understand what you’re going through. We (I say we, actually it’s my husband who is going through this, not me) see a specialist team every single week (speech therapist, specialist head and neck cancer nurse and nutritionist. They go through every single symptom, pain relief medication, mouthwash and check the mouth and neck.... they have supported us and prepared us and let us know what to expect week to week- as Well as increasing all meds before we’ve asked them to as and when they feel they are “upping the game”. I honestly can’t imagine how scary this must feel without that understanding and reassurance. It upsets me to think that you’re not getting adequate support during what is such a frightening time. I’m really glad the information on here is helping. Please do look at my previous post where I’ve listed the meds that my husband is on as you may just find something that could help. One good tip is a small pocket sized spray bottle that you can fill will water and spray in your mouth, cheeks, under tongue to moisten and act as fake salaiva. My husband uses This a LOT. Another good idea is to mix the meds together so it’s ONE Painful gulp instead of 3 or four. And if it’s too thick and glucky add some water. Just small ideas ... anything that may give you some temporary relief. I’m sure you’re trying everything and have figured what will and won’t work for you - but someone may just read this and find it might help. I hope. Keep fighting on you brave people 🙏🏻🙏🏻💕💕 ... View more

Hi there mozz. How are you doing? Well we had a difficult week... but somehow have ploughed through. He does have a very strict med and mouthwash routine going so for whoever is reading this you may find it helpful as I truly believe sticking to the routine come rain or shine has helped tremendously. Here it is: Difflam 4 times a day Antacid oxetacaine 4 times a day (20 mins before attempting protein drinks) Caphosol (mouth rinse) 8 times a day  neurofen (4 times) Paracetamol (4 times) Liquid morphine (currently 5ml every four hours Nebuliser 3 times a day Diprobase cream all over neck and head etc 6 times a day He does this religiously every day. It is a routine the has kept him going and kept the pain and discomfort to a manageable level. The team working with him have been all about pain management and keeping on top of it all. As of this week (penultimate) he is no longer managing any food, just concentrating on protein drinks and calories. He was very poorly over Tuesday and Wednesday but they gave him some intravenous fluids and he is now feeling better than he was. His neck is just beginning to show a few areas of blistering. And talking is very difficult - effort and pain. Lots of sleeping. But also awake periods where he is a bit more “energetic”. He’s very stoic and very focussed- he may have to go into hospital next week to have the last chemo depending on how he is doing... one more week to go! I can hardly believe we are almost there. I do recognise of course that there is still a long road ahead but at least psychologically we can move forward in our heads and look to the future ... love to everyone - keep up the fight xxxxx ... View more

Wow you described that so well, Jaffa, you just made me very emotional. It’s so sad- you’re absolutely right. The quiet, the sadness, the loneliness.... my husband is difficult to “care for” as he’s so independent and would Rather put his head down and get on with it but in doing so he has become quite insular.  I recognise that this is what he must do to get himself through such a traumatic time, but I miss him and it’s so terribly hard to see him suffer whilst still he desperately holds on to his dignity.  I miss the fun, the laughter, the social life (he doesn’t want visitors right now) and our life outside of hospitals and the safety of our house. I know that life will resume to some kind of normality in time - perhaps a different kind of normality to our “pre cancer” days but right now that seems a little way in the future. It’ll come. All I want is for him to feel better- it’s rough! X ... View more

 Hi there!  This definitely is one of the more positive posts So that’s encouraging! Dry mouth - that’s already started and he carries water and A water atomiser spray everywhere with him.... I can see this being an ongoing issue.... still managing soft foods - he has to psyche himself up as he has no appetite and it’s such an enourmous effort, but so far he’s hanging in there. Sending love and good wishes to your family.  How are YOU doing? I’ve been ploughing through and have been pretty strong throughout (our family have been through a LOT  in the last year and I have learnt to somehow plough through) but today he was down and struggling and I felt so sad and helpless seeing him suffer.  Tomorrow is another day ..... xx ... View more

Hi mozz Thanks for  taking the time to reply. I have read a lot about the thick mucus and it sounds particular difficult to deal with. He’s very low today, for the first time probably, it’s a bank holiday Monday (I’m not sure what country you are base i’m not sure what country you are in)  it’s a very hot and comfortable day, and the effects if he chemo have  made him extremely tired.  Tomorrow is another day! And so we continue with this difficult journey! Sending love and good wishes your way 💪🏼💪🏼 ... View more

Hi I’m new on here and before I “signed up” I read some of your posts. I’m Not sure I am using the forum correctl so I hope you get this message!  Your posts have been helpful- for  me, I would much rather know what we have to face than head into the unknown -  I respect that everybody is different.  and I would much rather hear it as it is then sugarcoated .   and so I have been reading lots of information, and that way there will be no unpleasant surprises along the way hopefully. I should add that it is my husband who has recently been diagnosed with stage 11 oropharynx cancer and is currently undergoing chemoradiotherapy.  We are currently halfway - just had second chemo (one more to go) and had his 18th radio session (15 more to go).  He is currently doing very well he had a bad start this week and I thought that was it-  he didn’t eat for two days so I didn’t imagine he would go back to it.     But once they sorted out his medicine pain relief out  He has gone back to eating - in between the protein drinks - Soft mushy foods with lots of gravy.  The mouthfuls are a struggle but he’s managing.  He is extremely focused  and is a naturally headstrong quiet person- So it appears he’s just putting his head down and ploughing through as best you ca so it appears he’s just putting his head down and ploughing through as best he can.  I think the most difficult thing for him is getting through all the whole routine of all his meds, mouthwashes- sprays etc  but he is very dedicated.  He has a whole routine that probably takes about 45 minutes  -  then he is ready for his protein drink or food, then he probably has a rest before it all starts again ! But he sets his alarms and goes through the entire ritual.  I think this is helping him massively . It’s become a little routine.  What is interesting to me is the effect after the treatment .  Everybody is saying to me well he is halfway through and he is doing amazing I can’t believe how well he seems .....  and even I perhaps didn’t realise that even once we get to the end this is by no means the end!! So your blog is extremely helpful in helping me to understand what is to come.....i am off now to indulge in some more or your writings!!  Take care and keep up the fight  💪🏼💪🏼💪🏼  ... View more