Going backwards... this is like a nightmare

Hi. It all sounds so hopeless but really it isn’t. Your dry mouth can be helped by chewing gum and maybe trying acupuncture. I have two posts in my blog about that. Keep taking the sips of water . I also have a post on lymphodema with a gentle routine to get rid of it though please get in touch with your team or mention it at your next review to see if it’s suitable. 
You might get a referral to a lymphodema clinic with some luck but if you can’t you should be able to get some exercises to improve it. It does need attention as it can get permanently hard. 
You can also get lymphodema in your throat. Have you any swallowing exercises to do? They would help and need doing every day. 
Re the deafness. Did you have Cisplatin? 
Taste can be rubbish and it’s just a case of sticking with it and trying different things.  Food is fuel for now. 
How do you get through? You do. A day at a time. It will get better. 

Thanks as always Dani.  I have been referred for the lymphodema nurses, so let's hope I can get an appointment soon.

As to Cisplatin, no, I didn't have that as I take my own chemo for my blood cancer. 

It just all gets very hard sometimes. The team are great, but they just say 'oh yes, that happens'.  But when there are so many challenges all at once, and the dry mouth stops me getting proper sleep, it becomes very hard to deal with. Especially when I was originally told that things should be getting better by 3 months....!

I just need somewhere to blow off steam, and I'm very glad this space exists.

Thanks, Andrew 

Andrew. Have you tried xylimelts at night time? If you have any saliva they do help keep your mouth moist at night. Having some saliva replacement gel is a good idea. There are lots about. Biotene and BioXtra are good. Just pop a bit on your tongue when you go to bed 

SlammedbySquamous said:

I just need somewhere to blow off steam, and I'm very glad this space exists.

Heavens. Rant away. It’s a good place to do that. 

Hi Andrew I’m 6 months out from the end of treatment and my dry mouth comes and goes still and I am using the Xylimelts on and off and they do help.  It is a bit up and down…some days feel better than others but gradually you start to feel more like your old self. I felt pretty grim this morning but by tonight I was feeling a bit better. hang on in there one day at a time x

Hi

I seem i am one of the lucky ones as i had a huge tumour at the base of my tongue and 6 weeks of Radiography and chemo and no aftereffects except for the amount of secretion my throat was giving me, but it slows down eventually.

Important to me and what i preach now as i am 71 i had a life changing experience around 30 years' ago i was self-employed and stressed out to the limit visit my friend's father who was 72 and said are you ok Larry. he replied well i woke this morning opened my eyes took a deep breath and realised i was still alive as it will not last for ever. and thought what more can i wish for. It changed me completely i realised the stress could give me heart attack and have huge effect on my family and what would be the worst that could happen to me i lose my house have no money but still be alive for my family. it has stayed with me ever since. This morning i woke to a beautiful but cold sunny morning it was fabulous. You Must take each day as it comes and make the most of it do not waste it as it could be your last.

Hi there. I was as deaf as a post for months, I was told it was due to lymphoedema. It has gone away now completely (1year on). Although sometimes my ears might block just for a second, until I get moving.   Lizzie 123

Zoot said:

This morning i woke to a beautiful but cold sunny morning it was fabulous.

Where are you Zoot ?

Hi Know it’s early days for you ,you might not  think it. Try sugar free gum I also had auricular acupuncture which did kick start my saliva production.i am now 4 years post treatment I still us. Xyimelts at night , water is my best friend. I don’t drink as much as I did but I do still drink water.

As for food it does take time my mantra was food is fuel I got very little enjoyment. Well buttered toast cheap white bread and poached egg was one of my go to foods 

this link may help. 

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022https

Hazel 

Me too. but today Sunday was even better sunshine all day and it allowed me to go fishing at 11.00 and my fruit and veg are still growing well What a great day to still be alive.  Hope it is nice tomorrow as i have speech therapy by the seaside followed by a speech therapy club i have just been recommended to attend so it will be my first visit.