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.

Hello Mary,

Hope all is well with you Mary and my apologies for the delay in getting back to you.

I can't believe tomorrow is the 1st March already, it must be well over two months since the end of your treatment, it's now nearly 10 weeks since my treatment ended and there has been a few issues both physical and emotional but I'm remaining postive.

I do hope your side effects of the treatment have subsided, the dry mouth and tongue coating you last mentioned I would hope will improved by now and hopefully your weight will have gained a bit, I was so pleased to hear your CT scan result was good.

My voice like yours has now gone all Donald Duck as well, which surprised me as I've had no issues with my voice at all until two weeks ago when my throat around the larynx swelled up with a hard lump, making swallowing uncomfortable and causing my voice to sound hoarse, I was hoping the side effects of the radiotherapy would have subsided 10 weeks after the treatment but I still have a very dry mouth with no saliva plus I'm still unable to taste any food whatsoever, which I'm a bit disappointed about, although I'm eating fine, as long as I drink plenty water to help it go down plus I'm still taking the protein drinks, so my weight has stayed reasonably stable. 
I still have the RIG feeding tube which I've never used once in the five months I've had the damn thing! The doctor says it will stay in until she gets the results of my final scan on the 29th March, so I've an anxious wait until then.

Hope you've been getting about and about, our garden is starting to awake from winter and I've been pottering about most days getting it ready for the better days to come, although I'll miss not having a glass of wine in the garden on the summer evenings as I'm told alcohol is not recommended post treatment, which is a pity as it was one of the few pleasures I was looking forward to enjoying.

We've not  heard from Erica, but I do hope she is recovering well and once again I hope you are getting your life back to normal Mary and that your progress back to normality is gaining pace!

My best wishes.

Peter.

The saliva thing gets better but takes time, at around 10 months mine has improved although a pack of crisps is out of the question.

Nobody has ever mentioned alcohol to me, i enjoy a beer at the weekend.

Sounds like your going great guns all posotive

Irate

Thanks, I was told I could have the occasional bottle of Stout to help me gain weight but after a few bottles I discovered I wasn't a fan, I'll try a large bottle of quality lager this weekend as I'm sure the occasional bottle will do no harm, would much prefer a large glass of red though!

Can't wait though to taste a pack of of smoky  bacon crisps, hopefully later this year!

Cheers

Peter.

Hi Peter and everyone here.  

Time is flying.....

The coating on tongue has eventually gone and I am maintaining my weight with the help of protein drinks.  We have came along way.....still taken small steps with food, I' am happy how far I have come.  I can now eat shepherd's pie but mash and veg are never too far away with a glass of water.

I had a throat infection and got antibiotics for it.  The infection is gone now.  It was followed up with the team and it was checked out. I will get more of these infection due to food lodging where the tumour was and I will need to gargle my mouth after each meal. I have a follow up in a few weeks in relation to this.   I also have a double chin now due to  lymph not draining away. Which I feel so not me, I dont like looking at it. I'm trying to keep positive and tell myself I could be alot worst. I have booked myself in with a massage therapist who has good knowledge of this. Also, I'm going for speech therapy....I have alot of exercise to do.  The speech therapist said I have stronge muscles which is of great benefit to me.

I am out everyday for my walk and the odd cuppa here and there. I got a new bird stand which can hold 3 to 4 bird feeders.  The birds that come to it are wonderful to look at from morning to evening. I planted a few daffodils which have came but the storm gave them a fair shaking. Must keep a watch out for a 3 leaf clover!

You wont feel the 29th of March Peter.

Great to hear from you. 

Mary.

Hi Mary,

Great to hear from you and it would seem we are both having similar issues with eating, we are both getting there slowly it's just taking time which I suppose is to be expected. My NHS dietician ordered more drinks from Abbot for me but apparently they are out of stock so I was only sent 15 bottles, hopefully more will be available soon.

Sorry to hear about your throat infection, glad the antibiotics have cleared it up.

I'm very self conscious about the large double chin I've developed, it feels hard under the skin and moves when I speak which makes me want to stay indoors and like you I feel so embarrassed just looking at it, I suspect it might be Lymphodema but I'll mention to my doctor when I see her next week, thank you for mentioning the therapy your doing, I will definitely try a massage therapist as well.

I've just my bird feeders out as well but within minutes the squirrels are on them trying to destroy them, at least the constant opening the back door and running out to the garden to chase them away is giving me some much needed exercise!

My first daffodils have just flowered this weekend and have brought some much welcome colour to my otherwise bleak garden.

Once again it's great to hear from you Mary, our postive attitude will see us through this.

Kindest regards

Peter

Hi Mary,

Hope you are well and that your throat infections have now gone, I can't believe it's over a month since we last spoke!

I do hope your final scan was good news and all is ok with you, I'm pleased to say both my PET and CT scan both showed that my back of the tongue cancer has gone and I'm now in remission.

I'm very relieved to say the least as the last 8 months have been a rollercoaster of emotions and to be honest it's been absolute hell some days but here I am at the other end at last!

I'm 14 weeks post treatment now and although I'm now all clear I still seem to have a very sore throat with issues swallowing and a deep nasal voice plus the Lymphoedema has made my neck swell up like a balloon making me very self conscious about going out.

How is your appetite? Mine is still non existent and with no taste and saliva I still really struggle with food, however its a small price to pay for being clear and I know and pray things will get better eventually.

Once again Mary I hope all is well with you and that the post treatment symptoms are not too much of an issue for you and hopefully we can now both get some normality back to our lives.

Best wishes

Peter.

[@watsons]‍ 

Hi

Have you not had an appointment at the Lymphoedema clinic to learn massage techniques to move all the fluid in your neck ?

Hi,

Thanks for the advice.

I was told by my oncologist that it was an unfortunate but common side effect of the radiotherapy, when I asked if anything could be done about it I was told it was something I'd need to live with and it might go away in time.

I've since learned there is a Lymphoedema clinic in the same hospital I was treated in but this was not mentioned to me, apparently you need to be referred by the oncologist which I'm about to do.

Hi

I was told it was a side effect of having all my lympth nodes removed with nothing in my neck left to move the lymphatic fluid, thus i had to learn to move it to the ones under my armpit.

I had the lymphoedema under control by the time i started radiotherapy and keep it under control by using these techniques.

It's strange how different people are told different things i was referred to the lymphoedema clinic based at my local hospice.

Keep posotive

Sorry to jump in on this post but my husband is now 10 months post treatment for tonsil cancer.  He also had lymphoedema of the neck due to the effects of radiotherapy.  I just want to say that you can be referred to the lymphoedema clinic not just by oncology but also by you gp, obviously it's better to come from the oncologist as it will be faster.  He was given exercises to do and they have a big effect on your appearance if you do them everyday, he goes to clinic every 4 months or so for a review. Please don't think it's something you just have to live with

hope this helps

Judy 

Sorry to jump in on this post but my husband is now 10 months post treatment for tonsil cancer.  He also had lymphoedema of the neck due to the effects of radiotherapy.  I just want to say that you can be referred to the lymphoedema clinic not just by oncology but also by you gp, obviously it's better to come from the oncologist as it will be faster.  He was given exercises to do and they have a big effect on your appearance if you do them everyday, he goes to clinic every 4 months or so for a review. Please don't think it's something you just have to live with

hope this helps

Judy 

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.

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.

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 Peter Just caught up on this thread great news welcome to recovery. I am almost 4 years post radiotherapy now happliy living my life. Ent appointments niw down to  every 6 miinyhs. I've a benign cyst on vocal cord it doesn't effect me so we are leaving it for now. As consultants say why disturb  down there if not needed. It's caused by the dreaded lack of saliva. I'm almost 95 % now normal saliva. Improvements do still continue  even 4 years down the line.

Hazel 

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