Update - Right Tonsil - 4 weeks post treatment

Hi everybody,  just an update for anybody interested and for me.

So, treatment finished 14th Dec and its been up and down. 1 step forward, 2 steps back. I'm still managing to eat and swallow on my own which is great. My tongue has been horrendously painful with ulcers and is split down the middle,  so I have been on fortisips alone for about a week . They're OK though and it saves on cooking, washing up and shopping so all good. I managed a crumpet with lots of butter yesterday and a soft dessert with cream, so think( hope) I've turned that corner and can start eating a bit more...even though it takes the skin off the roof of my mouth.  I am starting to wean myself off the pain meds,  just paracetamol to take the inflammation down and lidocaine lollipops for my tongue ulcers before I brush my teeth, cutting down the morphine too. Only a week ago I was taking everything I could religiously,  so I think that is a huge step forward. My saliva glands on the left are working a treat now,  the right not so good. Top right inside teeth, I'm getting a tiny bit of 'drool' when brushing teeth, but nothing at the bottom yet. Mucous at back of throat is nowhere near as bad as it was a week ago, so hopefully that's heading in the right direction too . I sleep for England .

I did have a melt down a couple of weeks ago following receipt of 2 copies of letters from hospital sent to GP. I was having a 'down' day, didn't understand one letter and the other one from oncologist and conflicting dosage info for pain meds. I should have been having a higher morphine dosage than I was taking.  I live alone so have to sort all these things myself. I hadn't seen or spoke to my specalist nurse since before treatment and my dietician only once.(she has since left too)Anyway, these letters were the last straw and I rang all the numbers I had until someone listened. Cried at them and voila,  I now have a new specialist nurse, not that I gave her much choice! Have to say my trust in them is zero, which is sad. I should have asked right at the beginning of treatment,  but only found out what should have been happening ie nurse and dietician attending every weekly clinic assessment, when I was talking to another patient at the hospital...she had a totally different journey to mine which was very lonely and scary. If it wasn't for this forum, I wouldn't have had a clue what to expect,  so thank you!   

So, things are heading in the right direction. It does get better, 10 weeks ago it felt like there was an endless painful scary journey ahead. Still a long wait for the scan to find out if it's worked, but it's gone over so quickly...probably because I've slept through most of it!

I always read through the other posts on here,  and an interesting observation is the way people grow in confidence (not sure that's the right word) from their first post to where they are now, even still pre treatment,  but certainly during treatment is testament to this forum and the advice and support found here. So thank you so much.

Time for a nap. Take care everybody,

Linda xx