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 Peter and Irate

What wonderful Good news Peter. I and so happy for you and your family. It's a great weight off your shoulders.

My appetite is still the same. Having soft food mostly, having to drink water with every bite I take. Slow progress..... a yogurt that I have been taken all along, irritate my tongue recently, dont know why but wont be having it again. 

Hows your speech? I am doing exercises to improve mine and find it very tiring and takes up alot of time. Which I never expected and will need to do for ever more.  It's a change of life but looking at the bright side I know I could be alot worst.

Thank you for telling us your brilliant news,

Take care all, Mary. 

Hi Judy,

Thank you for the information, there does seem to be a mixed feedback from the medical staff I've spoken to re my neck Lymphoedema, today I had my final meeting with the McMillan nurse to have my feeding tube removed (what a relief!) and when I mentioned my large neck swelling she said the same as my oncologist, that it was something I'd have to live with and that I was to massage my neck regularly and that might help, but no mention was made of any clinic.

I will contact my GP as they might be more able to help as my neck is very swollen and tender and seems to be getting worse with every passing day so I would like some help to relieve the swelling.

Thanks again for your advice.

Best wishes.

Peter.

Hi Mary,

Great to hear from you, yes it has been a great weight of my shoulders especially my wife and daughters as it's not been easy for them,  they've been a rock to me during the last six difficult months, although I'm still in a permanent state of tiredness and exhaustion especially in the morning but mentally I'm more back to my old self.

My voice has gone very nasal and I'm told this might be a permanent feature but the good news is I no longer need to do the speech exercises which is great! My appetite like yours is very slow progress, to be honest if it wasn't for my wife forcing me to have regular meals every day I'd probably not eat at all, as it is I've lost nearly 7lbs since February I must try much harder to eat more!

My RIG feeding tube was removed today, what a relief to feel it gone!

Once again Mary we are both now on the home stretch and thank you for your kind words on my good news.

Best wishes

Peter.

Awe, That's great news the RIG is gone. Onwards and Upwards Peter. Chat again Soon.

Take care

Mary

No problem, you're very welcome. if you search YouTube or Google for lymphoedema exercises for head &neck cancer you can make a start whilst your waiting to be referred, we were told once you had it you have it always so they really are key to keeping it under control.  With regard to eating, taste will eventually come back, unfortunately if you liked chilli/curries etc you probably won't be able to tolerate them anymore!  Hubby still has to have water to hand and needs it for every meal but he does now eat relatively normally.  His appetite did take months to return tho and is still not completely back how it was.  Please don't take any of this negatively, I just want to reassure you that what you're experiencing is 'normal' 

take care

Judy x

Hi Judy,

Thanks for the advice on the You Tube videos, I've been looking at several of them this morning and as you say this will start things going until I can see a Lymphoedema nurse.

I really enjoyed Indian food before my treatment and last week I thought I would try a mild curry carry out from our local Indian restaurant for my birthday and wow that was a big mistake! The pain and burning on my tongue and throat was painful, so lesson learnt, no more spicy food!
Thank you for the reassurance that my appetite and taste will eventually return, I know it will take time but I used enjoy my food and especially a glass of wine but after six months of no alcohol I now realise I don't miss it at all!

Best wishes

Peter.

Hi everyone,

It's been so long since I came on here. Just wonderful to read you're in remission Peter! So happy to read your news, and your tube is out, phew. I had scans in the beg of Feb and also had the all clear - although they never found my tumour so I guess it could still be there lurking!

When I had my right side lymph's removed I was given this link (below) for any lymphoedema. I did it every morning in the shower (soap as an emollient) and it completely removed my (gorgeous) double chin. After treatment I stopped as I didn't have any swelling and I was told my system would eventually start to compensate. A few months later I told my physio my jaw was sore, after examining me she said I had lymphoedema and I should continue the massage probably forever. So I'm back to the daily rub but I have no swelling or soreness again - takes about a week to see any change at all.

youtu.be/VQdLZ26r-rU 

I'm eating completely normally, still not a fan of sweet things but I can eat spice again and enjoy a large red :-)  I'm not tired, my saliva is maybe 70-80% - main concern is the tightness in my neck from surgery.  I do get sick a lot, my immune is pretty screwed but I'm trying to eat well and it's just a waiting game I guess. 
Mary glad to hear your throat infection is gone and you're feeling more like yourself. 
Take care all, Erica

Hi Erica and Mary,

Good to hear from you Erica and I'm so pleased to hear you got the all clear as well, it's taking time for it to sink in that I'm clear as the last 7 months have been grim, however all three of us have come through it with hopefully a return to normal life in due course!

Thankyou so much Erica for the Lymphoedema link, I've being doing the exercises this morning. Under my neck the swelling is quite bad plus my chin and lips are also swollen so I'm very self conscious about how I look when I go out.

My McMillan nurse and GP seem reluctant to recommend me to a Lymphoedema nurse so I will have to concentrate on the videos and self help groups which is fine, but I'm at a loss to why I can't get physio help from the NHS.

I'm eating well again but I still can't taste a thing with very little saliva plus I'm still losing weight, but I'm now having the occasional bottle of beer which I'm struggling with, but I might try a glass of red soon to see if get back to enjoying a glass of wine on a summer evening again!

Sorry to hear your neck is still stiff Erica, that must be very uncomfortable for you plus feeling sick as well must be quite dehabilitating, but we know these side effects will hopefully pass in time.

I'll get back to my neck massaging again, I'd love to get some of the swelling on my neck down as I'm taking my wife and daughters away for weekend hotel stay on Friday to thank them for looking after me and being patient when I was having my down days, I might not be able to enjoy the food and drink but it will be nice for us all to be together again.

My best wishes to you both.

Peter.

Hi Everyone

Just checking in... haven't been in touch in awhile.  All is good here, I'm still on soft food but eating some lumpy food too.  My speech is still the same but doing the exercises which can be very tiring. My lumphedema neck isnt too bad...

Hope everyone else is doing good.

MARY

Hi Mary,

Great to hear from you.

Glad all is ok with you, it must be six months now since your treatment ended and I note you still have issues with eating, as I am as well.

I've been a bit lax with my exercises, I hope in time they don't get so tiring for you.

I'm now 5 months post treatment and I'm stilll far from back to normal but there has been a slow but increased improvement from the beginning of this year!

I had my monthly trial visit to the oncologist today (I'll have monthly visits for two years as I'm part of a university trial) and the camera showed all was clear on my throat which is good news, the only issues I have now are still having no taste or saliva which makes eating a chore, also my neck lymphoedema swelling is very bad which the doctor says even with manual drainage will probably be a lifelong thing!

My voice is still very nasal and swallowing is still a struggle with the result I'm still losing weight but otherwise my fatigue has gone and I'm beginning to get my life back to normal.

Once again I hope your recovery continues Mary and with Summer just round the corner and we can spend more time in the garden which I'm certain will help our recovery.

My best wishes

Peter.

Hi Mary,

Great to hear from you.

Glad all is ok with you, it must be six months now since your treatment ended and I note you still have issues with eating, as I am as well.

I've been a bit lax with my exercises, I hope in time they don't get so tiring for you.

I'm now 5 months post treatment and I'm stilll far from back to normal but there has been a slow but increased improvement from the beginning of this year!

I had my monthly trial visit to the oncologist today (I'll have monthly visits for two years as I'm part of a university trial) and the camera showed all was clear on my throat which is good news, the only issues I have now are still having no taste or saliva which makes eating a chore, also my neck lymphoedema swelling is very bad which the doctor says even with manual drainage will probably be a lifelong thing!

My voice is still very nasal and swallowing is still a struggle with the result I'm still losing weight but otherwise my fatigue has gone and I'm beginning to get my life back to normal.

Once again I hope your recovery continues Mary and with Summer just round the corner and we can spend more time in the garden which I'm certain will help our recovery.

My best wishes

Peter.

Great to hear from you Peter, and it's great you got good news today. I had a recent appoint and all is well. I mention about my swallowing, well is more after swallowing, trying to give that extra push in my throat to put food down. I feel sometimes that I could get choked. They said to keep sipping water....with the food.  I know I'm not use to my turtle neck but keep massaging your neck, every bit helps. Yes the garden is getting a make over. I'm outdoors every day which is a blessing. 

Chat again soon, Mary

Hi Mary / Peter, it's great to hear all your news, I'm glad you're still checking in. I feel like we were all pretty lucky... although not as lucky as people without cancer!!!!!

I'm almost 7 months, the same as ever, a little bit dry, no sweet taste and a very annoying stiff neck from the surgery. Swollen jaw, puffy cheek and the daily massage feels a bit Groundhog Day but hey ho. 

I'm not working on the garden, instead I'm feverishly booking a big summer trip! What with covid and treatment a family trip feels like a long time coming, hopeful plans. 
Erica

Hi Erica,

Good to hear from you, 7 months gone, it's all gone so quick, sorry to hear you still have this continuing sore neck, do the doctors expect improvement in time? it must be very trying for you, I've tried everything to bring down my neck swelling but daily massaging seems to make no difference at all and this morning for reasons unknown it was so swollen I could hardly move my neck!

Went out for a carvery meal today with my wife, was looking forward to hopefully tasting some of it but I could taste nothing, everything was bland with no sweet or savoury sensation on my tongue, the doctor said it should return soon but I'm a bit concerned it might be longer!

I took the family to a AirBB earlier this month and it was great for all of us to be together, I do hope you enjoy your forthcoming family trip, you deserve it! 

Best wishes

Peter.

Hi Erica, I havent came across the sore neck so I am sorry I am no help. The break away will be lovely for you all. I trying to picturing myself going away but I will have to book an apartment to have uses of a cooker.  There isnt much on the menu for me when I eat out. Vegetables do be too hard and some places look at you strangely if you ask to get them pureed. I havent gone back to fish or any meat really ...only for mince, but must try and encourage myself to do more now that the summer is here. Have a wonderful holiday and hope you get plenty of sunshine. MARY