Hi Mary, I read your post with interest as I also have a rare situation with oropharynx (back of my tongue). I seem to be a little ahead of you, but it's hard to find people with this scenario. 
I had a lump in my neck and saw an ENT. I had my MRI and PET in Jun. I then had a fine needle biopsy on the neck lump which told the doctors I had cancer in the mouth somewhere due to the type of cells (SSC).  I had a general anaesthetic biopsy to look for the primary, which seemed be flagged (via PET) at the back of the tongue, however despite 20+ punch biopsies they couldn't find it. This is apparently rare. 
Then I had a neck dissection (do not google image this!) to remove my lymph nodes, where it was confirmed I was HPV+. It's also basaloid (aggressive) which is again rare. So I have a rare cancer, that they can't find which makes it rarer that's basaloid so even rarer!! I do not feel special!!!!!!
Now I'm on my fourth session of proton today (a type of radiotherapy) and feeling very alone (I had to travel for treatment and leave my husband and young children behind). The radiotherapy is just targeting where they think it's likely hiding. 
On the positive side, although we have these rare cancers, I've been told by multiple doctors that the prognosis is good - while it sucks it's happening to us all, we have every reason to be hopeful xx
Erica

Hi Erica, just wondering how are you getting on. You must be on your 4/5 week of treatment. I'm on my 3 week and find it very tiring. I had the speech therapist yesterday to practice mouth movements. She would like me to try some Mince Meat and Rice Pudding to see can I manage the small lumps. I'm not ready to try the Mince yet and she said that was ok.  Hope to hear how you are doing. Mary.

Hi Mary, thanks for thinking of me. I’m on my way home from treatment 25 so that’s five weeks done, home stretch! I’ve been lucky so far, I’m eating semi normally and not feeling too tired. I’m not having chemo which must help a lot. 

Two other things have been helpful. Exercise 30m 3 times a week and salt gargle. I loathe exercising but the team have been explaining all the benefits to cancer patients: it helps get blood flow to tumours (especially for large/dense tumours), it helps circulate the treatment, it produces anti inflammatories, it helps with fatigue. I’ve been (reluctantly) out every two days for a slow 30m jog rain or shine, and I do feel better the next day. The salt gargle helps with the soreness as well as keeping everything clean, not a lot of saliva anymore. 
I got sent a YouTube link from Christie's NHS hospital with all the mouth exercises, if you need it let me know! I'm sure you're already covered after your session.

I also eat fatty smoothies, with avocado, banana, full fat yogurt, nut butter and so on. I know that’s probably not for everyone!!!!

You’re almost halfway Mary, just showing up everyday is brave. I hope you’re staying positive and making plans for the future. This second half will go really quickly, and then you can say goodbye to that horrible mask forever. 

Take care, enjoy your rice pud :-)

Hi Erica, Your doing wonderful. Well Done You. Your nearly there. I have a bit to go yet.......mouth is sore. Have been doing the salt and water. I find it very good. 

Chat again soon 

Mary.

Hi Erica,

Well done, you seem to be coping very well with the radiotherapy and I'm certain it's because of your positive frame of mind, you are right about the exercise as I'm certain it plays a very important part in the treatment and recovery, I do hope I've the same motivation to do the same.

My letter arrived from hospital yesterday detailing my 35 radiotherapy treatment times and dates, the last one being on Christmas Eve! it will be combined with 3 long chemo sessions with overnight hospital stays, this all starts on the 8th November.

This coming Monday it's the mask, CT scan, consent forms, dietician and the McMillan nurse chat, so a busy day at the hospital, a few day later it's the RIG fit  with my first ever overnight stay in a hospital which to be honest I'm not looking forward to!

Mary, I do hope you you are keeping your spirits up and that you are not too tired, you must be on your fourth week now so you are past the halfway point, I'm prepared for the tiredness from radiotherapy, but it's the thought of the chemo side effects that's making me anxious, however I think I'm ready mentally and hopefully physically for whatever happens in the weeks to come.

Best wishes to you both.

Peter

Hi Erica,

Well done, you seem to be coping very well with the radiotherapy and I'm certain it's because of your positive frame of mind, you are right about the exercise as I'm certain it plays a very important part in the treatment and recovery, I do hope I've the same motivation to do the same.

My letter arrived from hospital yesterday detailing my 35 radiotherapy treatment times and dates, the last one being on Christmas Eve! it will be combined with 3 long chemo sessions with overnight hospital stays, this all starts on the 8th November.

This coming Monday it's the mask, CT scan, consent forms, dietician and the McMillan nurse chat, so a busy day at the hospital, a few day later it's the RIG fit  with my first ever overnight stay in a hospital which to be honest I'm not looking forward to!

Mary, I do hope you you are keeping your spirits up and that you are not too tired, you must be on your fourth week now so you are past the halfway point, I'm prepared for the tiredness from radiotherapy, but it's the thought of the chemo side effects that's making me anxious, however I think I'm ready mentally and hopefully physically for whatever happens in the weeks to come.

Best wishes to you both.

Peter