Second biopsy

Hi oh dear so sorry about the hot spot hopefully had the results from the biopsy ?  There’s only 2 others I can spring to mind that had proton beam therapy from memory I will tag one of them Nearly50 Lisa was also treated at Christies as  far as I know she didn’t have a hot spot but know she struggled after treatment eating. i had a ng tube during treatment for a total of 6 weeks once I started eating or swallowing again it was mostly the ensure drinks diluted with milk to give me extra calories. Then slowly reintroduced foods poached eggs were an easy food to slip down to start with . 
hope this helps 

Hazel 

Thanks so much. It would be great just to hear how anyone else got through this, as I was so positive before and this last few weeks has really knocked me back.
I forgot to mention (and it’s brilliant news but I’m unable to celebrate due to everything else) that the biopsy was clear, so, as soon as I can get over this internal pain and start sting again I’ll be on the road to recovery. 
Cheers

Dave

Hi Dave, hi everyone....sorry it's been a while 

I too had proton beam and 2 X cistplatin for tonsil cancer that had spread to my soft pallet and lymph nodes.

The treatment was gruelling. I too had an Ng tube (had a couple actually) due to the weight loss .. I lost 2 stone and am still that weight now and my treatment finished March 2021.

I had to take oxycodone and other strong pain relieving drugs too for a long time.

I too didn't have anyone to compare notes with which was hard.

I still take pain relief I take pregabalin, and a drug for inflammation called Etoricoxib due to lymphoedema in my tongue. I also use paracetamol. I have anaemia so take an iron supplement. 

My mouth is veryyyyy sensitive to flavours and texture. 

I do understand how painful this is . The mouth and throat is sensitive and it really is life changing. The skin should heal but it does take time and I don't think anyone can say how long it will be before it heals. I don't think it will ever be the same. 

I can eat lots more than I could now. I can eat ice cream, which I used to dislike, but not any more and I've just recently been able to eat cheesy beans on toast lol. 

Keep drinking the fortisip drinks .. sweet but good for calories. I used to have porridge with double cream, semolina with double cream... Anything sloppy to get calories inside ...

Please message me anytime Dave.

Big hugs X Lisa x

Hi Lisa Thank you for popping on to answer Dave. I’ve started using Propolis as I have burning tongue issues with quite a few foods I’m noticing an improvement. It’s deffo worth you trying. 
You can get it from Amazon will put a photo of it on. A lady whose  husband was going through treatment investigated what’s was new her hubby managed to eat all way through !!! True !! 
hugs Hazel keep in touch. 

Hi Hazel,

How are you?

I've never heard of Propolis before but will definitely look into it.  How do you use it?

Xxxx 

Hi Lisa. Sorry to hear you’re still in trouble . If you are suffering actual inflammation of the mucous membranes in your mouth propolis might help. It’s a mouthwash. Look on Amazon.  Make it up with soft water or you’ll end up with horrid sludge floating on the top. It’s worth trying. 

Nearly50 said:

I've never heard of Propolis before but will definitely look into it.  How do you use it?

Bee Health Propolis Liquid 30ml Pack of 2 https://amzn.eu/j8wtPca

Hi Lisa I’m excellent thank you, off to Spain shortly si will be in my bike. I’m definitely noticing am improvement in my burning tongue snd mouth even managed a very mild butter curry other week. !! As Dani says I use lukewarm water rinse my mouth out then I swallow it as it helps the immune system. Yiu can rinse and spit it out if you prefer it’s an squired taste but I’ve bern using it twice a day for almost 2 months now. 
Really hope it helps as you’ve suffered enough. Hugs Hazel xx

Thanks Lisa! Much obliged. I can’t believe that 7 weeks after the biopsy I’m still in so much pain, can’t sleep more than a couple of hours at a time, can hardly take anything by mouth and it doesn’ seem to be getting any better

i️t really brings me down - I plan to call Macmillan later to speak with someone to try and help my (pretty bad) emotional state. 
thanks for listening! 

Hi Hazel 

ibr got a couple of bottles of this. Do I just pop a few drops onto my tongue or do you mix it with something to drink?

Hoping it helps!

thanks!

Dave