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

Hello Erica. I'm well past the treatment stage for Stage 3/4 but still have a lot of difficulty with eating,still mostly on blended foods, as my new bit of tongue is still not working well. I'm interested in the YouTube exercises you mention as I have only managed to find American ones so far and would prefer NHS. Would you be able to forward the link to me? Many thanks. Sue

Hi Sue, here's the link. Any issues with seeing it let me know (hope I can post links in a message). 
www.christie.nhs.uk/.../speech-and-language-therapy-exercise-videos

I was advised to do the exercises five times each, five time a day. Another exercise I was verbally told by physio was to forefully say the word 'hawk' five times, concentrating on the k sound on the back of your tongue.

Well done getting through treatment, it be must be frustrating trying to get used to the recovery period. I hope you are able to see some better mobility soon. 
Erica

Hello, hope everyone is doing okay. 

Peter how did today go for you. Hope it wasnt too long of a day.  Getting fitted for the Mask isnt the nicest.

Thank you Ericia for the video clip. I must try and practice more.

I am on week 4. I have maintained my weight this week. the nurses and dietitian are wondering what's my secret.

My voice is hoarse this week. I was given a prescription for a mouthwash incase I need it.

Best of luck Peter in the coming days. 

Mary.

Hello, hope everyone is doing okay. 

Peter how did today go for you. Hope it wasnt too long of a day.  Getting fitted for the Mask isnt the nicest.

Thank you Ericia for the video clip. I must try and practice more.

I am on week 4. I have maintained my weight this week. the nurses and dietitian are wondering what's my secret.

My voice is hoarse this week. I was given a prescription for a mouthwash incase I need it.

Best of luck Peter in the coming days. 

Mary.

Hi Mary,

Good to hear from you and well done on maintaining your weight, it's not easy when your appetite fades and eating is the last thing you want to do, but as we know nutrition is essential if we are to keep our strength up for this tough treatment, so well done again.

I was informed today that I was not accepted for the immunotherapy trial due possibly to my lung cancer, so I'm a bit disappointed as it was going to be another tool in treating the cancer, however I'm sure the current course of chemoradiotherapy will do the business!

The face mask fitting was not nice but bearable, what I was surprised about was the number of people in the waiting lounge having the same procedure done, there was one young lad in his late 20's, three other men ages with me and several older men all with various throat cancers and that was only the mornings intake and here was me thinking throat cancers were not that common!

My RIG feeding tube gets fitted on Monday, so I'm a bit anxious about the procedure but I'm told I will definitely need it week 6-7 and post treatment, plus the 10 hour chemo infusion on day one of my treatment next week fills me with dread, it's a long time to sit in one place, fortunately I have lots of music on my MP3 player and some good books.

Thank you Erica for the speech link, it was very informative and with my cancer being back of the tongue I'm sure I'll need help with this in the months to come.

I do hope your hoarse voice is not too bad Mary and that week 5 goes well for you.

Best wishes

Peter

Hi Peter, the mask is one box you can tick already, now you know what to expect 'on the table' hopefully it won't be so unknown. On my last day I asked to jump on it! The nurses thought it was hilarious but I crushed that bloody thing flat :-)

I didn't have one but I have read lots of people describing their tubes as life savers. If you don't need to think so much about what you can find to eat or the discomfort of swallowing maybe you'll be able to tolerate the treatment better.
I'm five days post treatment and I wouldn't say I feel worse than last week, about the same. Just for info. 
Keep going, thinking of you. 
Erica

Hi Everyone,

My taughts go out too you Peter and to your family. I agreed what Erica said, the Mask is one ticked off the list and to acknowledge that Peter. The littlest of things can be a major achievement.  I hate every minute of the mask, I get a sedative and will for the rest of the treatment. I say to myself it's another day I wont have to wear the f....thing again. Very tried today....I seem to flop when it comes to the weekend.  Well done Erica, 5 days post treatment, I cant wait until I get there, fingers crossed.  Whats is next for you Erica?   Is it waiting for a few weeks then a Pet Scan? I'm Starting week FIVE on Monday thank God. I really appreciate this chat we have here. Takecare Everyone xxx Mary.

Hi Everyone,

Hope all is going reasonably well, Erica you must be 10 days post treatment which is a goal Mary and I can't wait to reach. You must be counting the days to your PET scan, your positive attitude is something I hope to achieve in the coming weeks.

Thank you for your kind words Mary, sorry to hear about the sedative with the face mask Mary, it must be a very daunting experience for you plus the fatigue as well, I'm certainly not looking forward to that, but you've not got long to go now, please be strong.

I had my RIG tube fitted on Monday which for some reason was without sedation, I did have a local one injected into my tummy but it was still a tough experience, it was also my first ever overnight stay in hospital which due to a sudden rush of COVID patients was full and overflowing, I had to share the ENT ward meant for four with 6 other men with various serious ailments, so sleeping was impossible due all the coming and going. I've another overnight stay on Monday so they can monitor my first 8 hour chemo infusion, did you both have chemo and if so how did it go?

After much asking I finally got my cancer staging, it is squamous cell carcinoma HP16, T4aN2cM0, I was originally diagnosed the 8th August so by the time treatment starts it will be three months which I think to be honest is longer that it should be but I suppose COVID has messed everything up!

I popped into the Maggies centre at my hospital and they were very nice and helpful, they have a head and neck cancer group which meets every month so I'm going to visit them at the next meeting.

Be strong and take care, we will beat this!

Best wishes.

Peter

Hi Everyone, sorry I havent been in contact. I had difficulty logging in the last week. Peter I hope all went ok on Monday. Have you started using the RIG.  I finished my chemo treatment today I had it once a week for 4 hours. The nurse today told me I did very well but expect a bumpy road yet as I could temporarily loose my talk. With this news, I'm going to do what I have done from the start and take it day by day. It's the only way to get through this journey. No one person is the same. . Food is like sawdust some days with no taste but I carry on.  I have Speech therapy once a week and have to practise excerises that she gives me. I must say it has made me laugh now and then especially when u see the dog looking and listening too me. I would have been a great witch over halloween practising my ee ee ee. .  Chat again soon

Hi Everyone,

All went ok on Monday thanks Mary, I'm glad this process has at last now started, I shared the ward with a young man also with throat cancer and we both had our first of the three overnight hospital stays for chemo infusions, which due to all the blood tests and hydration went on through the night so sleep was impossible.

Post Chemo wasn't too bad, although all the different drugs they are now giving me must be helping, went back to hospital for more hydration today and again tomorrow which will also be my 4th day of Radiotherapy which has made me quite fatigued already.

Still swallowing foods ok albeit painfully, but food has started to become tasteless and bland.

Not using the RIG yet but I seem to be having some issues with it already, the district nurse is coming round on Friday to check it out.

Pleased your speech therapy is going well Mary and I can just visualise your dog looking bemused at you when you do your exercises which must be very confusing for your poor dog!

My hearing seems to have got worse and I have trouble listening to the TV unless it's turned up loud, hopefully that will soon pass!

Week one nearly done, six more to go!

Still trying to be positive and strong but still having a few wobbles especially during the night but I'm finding the sleeping tablets helping a bit.

My best wishes.

Peter

Well done Peter, you will be tired so make sure you rest.  I found it very difficult to do at first as I was very much an outdoors person. Great to hear from you and best of luck for the coming days. 

Erica how are you doing?

Chat soon, Mary

Thank you Mary for your kind words, I'm an outdoor person as well and have had a few small walks in the Autumn sunshine, but I'm just amazed how quickly the fatigue comes on after a little exercise and this in just over one week of treatment !

The other symptom the doctors did not mentioned is the chronic indigestion, no amount of anti-acid tablets or Gaviscon helps and sleeping can be very broken, which as you can imagine just adds to my tiredness.

The district nurses came round today and showed me how to use the RIG when the time comes which they say will be soon, not looking forward to it as it seems to be a bit of a rigmarole to use however needs must.

Hope all is well with you, one day at a time like you say is my mantra to see the coming days through.

Best wishes.

Peter

My sisters cat was the same when I did my exercises!!!  They must think we're very odd :)

Hi Peter, I had to smile to myself when I read your note about my positive attitude.  I can assure you I have my pitch black moments!  I remember when I had my teeth extraction, such a silly thing but I sat in my car and thought I would never stop crying :-)  I'm sorry to hear the tube fitting was tough, I've got no experience with this, I'm glad it was just a one time exercise though, another tick behind you.

You must be apprehensive about the next period, it's a means to an end but that doesn't make it any easier at all I know.  Counting down the days helped me, planning food in advance so I wasn't scrabbling around finding appropriate food helped, also not waiting for the pain and taking regular meds. I'm sorry I can't offer more.  How are your family coping?

Re the indigestion, the hospital gave me "Antacid & Oxetacaine" suspension as well as being a liquid antacid, it's has numbing properties so it helps numb your mouth and throat too.  I found it helpful before bed.

I'm 3 weeks post treatment, still no sign of taste buds, so even though my throat is a lot better it's hard to summon any excitement for food!  My cancer was never found so they aren't sure what my next steps should be - risk of radiation from repeated PET scans plus they don't know where to look.  They are considering a one time 3 month scan and then nothing else if clear.  My biggest issue now is from my neck dissection, which you guys didn't have so you won't have this.  The scar is very tight and it makes neck mobility an issue and has left me feeling ‘strangled' all the time, I'm working with physio but it's quite wearing, it won’t likely ever be normal again.  I want to unscrew my head for a while for a break!!

How are you Mary?  How’s your voice?

Take care all, Erica