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 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

Hi Everyone, Erica 3 weeks!!! Time is flying. I'm on my last week of Radiotherapy, finished chemo last week. I'm very hoarse this week but doing ok. Has anyone got the flu vaccine or booster for covid. I dont know what to do on this. My doctor said yesterday I could get the flu vaccine but, am I bringing on something I dont need at this time. Peter, it great you got out for a walk in the sunshine, its lovely when the sun shines but be wrapped up. Energy levels vary day to day. Go with what you can do. I get a cat nap in durning the day if I feel like it and I go to bed earlier because I know I be up durning the night.  I have avoided going out in public places, just afraid of Covid as our immune system is very low. I get my groceries picked up by son which is great but miss meeting up with others and having the chat. I didnt have any acidity so sorry cant help you with that. Well done in getting week one over with Peter and half way in week 2. You are doing great. One step at a time. Chat again soon, Mary

Hi Everyone,

Good to hear from you both and for the updates on both your progress.

I took advice from my GP Mary and got my COVID booster and flu jab over three weeks ago, so although I cut it fine for my first chemo I was informed it was wise to get them done ASAP.

My family are fine thank you Erica, my wife has been a rock and she is coping with my increasing black days and changing moods which unfortunately being a Scot come far too naturally for me!

I've never been told why I never got a neck dissection as I was informed I would by the oncologist but I suppose each tratment plan is different, I do hope the physio improves your neck discomfort as I would imagine the mobility issue your having must literally be a pain in the neck!

Week two is coming to an end and my post chemo symptoms of nausea seem to be a constant feature, thank you for your advice on the anti acid medicine Erica, I will mention this to my doctors session tomorrow.

Glad you chemo is finished Mary did you have post symptoms? I'm having loads of cat naps but the dreams I'm having are the most vivid colourful and strange that I've ever had, some of them have my parents who both passed a few years ago trying to speak to me through a large glass window in an imaginary garden but we can't communicate, very strange how dreams possibly interpret our inner thoughts.

Spoke to the speech therapist today and because I'm having 35 radiotherapy sessions which is 5 more than normal I will have major speech issues post treatment, no wonder I've trouble sleeping at night!

Well done again on both of you coping so well on this difficult journey, I'm taking each day at a time and hoping for the best.

Best wishes.

Peter

Hello Everyone,

Happy Christmas to One and All,

I hope you are all ok. Peter - I have been thinking about you and you must be finishing this week. I hope it wasnt too difficult for you.

Since my last message, I have found it very difficult after my treatment. I got mouth ulcers that were so painful. I got a prescription mouthwash to help. No food only my liquid protein drinks and custard. I have turned a corner but it was difficult. I'm gradually getting there. My speech is poor as the back of my tongue is very week and I need to do daily exercises to improve this. 

That's it for now, just wanted to say Hello and have a Safe Christmas.

Mary x

Hello Everyone,

Happy Christmas to One and All,

I hope you are all ok. Peter - I have been thinking about you and you must be finishing this week. I hope it wasnt too difficult for you.

Since my last message, I have found it very difficult after my treatment. I got mouth ulcers that were so painful. I got a prescription mouthwash to help. No food only my liquid protein drinks and custard. I have turned a corner but it was difficult. I'm gradually getting there. My speech is poor as the back of my tongue is very week and I need to do daily exercises to improve this. 

That's it for now, just wanted to say Hello and have a Safe Christmas.

Mary x

Hi Mary, 

Happy Christmas to you too! I'm glad you're feeling a bit better, it really is a horrible experience. I'm almost two months post but I still get blisters at the back of my mouth and I don't have all my taste back but I do think every day is slightly better - it's just so slow. I hope mentally you're doing ok Mary, that you have people around you to lean on. 
During the madness of Christmas preparations and excited young children I have found I'm not doing my neck stretches and mouth exercises as regularly and I'm skipping meals because I don't have time to make something soft but healthy - so I know I need to do better. 
I seem to remember Peters last day is Christmas Eve, I imagine he's feeling pretty dreadful about now. I hope he's managing ok and focusing on the future. 
Best wishes all, Erica x

Hi Ericia, lovely to hear from you. Your right it has been very slow but I can feel I'm getting there. I'm not great at the exercises . Happy & Safe Christmas

Hi Mary & Erika

Great to hear from you both and thanks for your updates on post recovery.

I'm sorry to hear Mary that post treatment recovery has been difficult, I've been lucky in having no ulcers yet and I can still swallow food but I've lost my appetite to such an extent that with not no taste I just don't want to eat and the thought and smell of food makes me feel sick, however I've been eating and drinking like you, 4 proteins drinks a day and lots of rice and custard pots but due do the multiple radio sessions that use up so many calories I've lost nearly 3 stone and a lot of muscle mass which the dietician is concerned about how much weight and muscle I've lost.

I Finished my last delayed chemo today had to spent two overnight stays in hospital as I was not hydrated enough to receive the chemo and I have two more radiotherapy sessions to go, the last one being Christmas Eve then I'm done with the treatment and all the daily early start visits to the hospital and become like you both a member of the post treatment club!

The radiotherapy nurses told me today that post recovery is a long and arduous trial that could take up to three months before any signs of improvement show with the last to come back being taste which is the one we all want to enjoy the most.

I've also being neglecting my mouth exercises, I must try harder as my speech therapist lady is a hard taskmaster and I'd be frightened to upset her!

You must be exhausted Erica looking after young children and preparing for Christmas but with two months post treatment under your belt things hopefully will get better soon.

My youngest daughter although double jabbed caught covid at the weekend so we have decided to delay the family Christmas until the end of the December so we can all be together safely, so I have that to look forward to.

 I do hope both your post treatment symptoms improve, I'm sure they will and may I wish you both a Happy Christmas and most of all a healthy New year and look forward to speaking to you both soon.

My best wishes.

Peter

Hello Peter, its lovely to hear from you and well done in getting through the treatment.  You will get through this, its great you can swallow the soft food. You are doing great.

Welcome to the Post Recovery Club!!!

I was told when I finished my treatment that the next 2 - 3 weeks would be difficult. They also said to make sure if I get a prescription when leaving, get the items, so that I have them ready at hand at home. Even though, I might not require them yet. No harm in knowing! 

Sorry to hear about ur daughter catching Covid. Its everywhere. 

I'm cooking Christmas dinner for my Son and family. It will be a strange one, as I love Turkey and Ham with all the trimmings but instead I be having Veg. Soup and Salmon! again .... everyone will be on desert while I be still sipping soup. At least we are progressing!

Have a Safe and Happy Christmas Peter and to your family. 

We will have a chat again in the New Year please God.

Take Care

Mary

Hello Mary,

Good to hear from you and thank you for your kind words.

well that's my treatment finished now, it's been seven long weeks with probably more discomfort to come but at least no more long trips to that radiotherapy machine.

I do hope you enjoy your Christmas dinner with your son, my daughters are coming round on Boxing Day for the full dinner, whilst I'll be having the usual exciting protein drinks and custard!

May I wish you a very pleasant and healthy Christmas and I look forward to hearing from you in the New Year.

My best wishes to you.

Peter

Well Done Peter. 

Cheers from me to you with a Protein Drink in a Wine Glass

Happy Christmas to All

Mary

Hi Mary,

Hope all is well with you and that you had an enjoyable Christmas with your son and family, it all seems such a long time ago now!

My wife and I had our two daughters stay with us over Christmas which was great, although not being able to eat anything was a bit annoying but as soon as my taste returns I'm having my turkey and trimmings no matter how long it takes!

You must be a least 6 weeks post treatment now, how are you coping with the side effects?

I've been very lucky, I'm now 4 weeks post treatment and the mucus issue seems to have slightly abated to be replaced with a lack of saliva and a very dry mouth and still no taste whatsoever, my weight has increased by three pounds and although I've no taste or appetite I am eating more and still drinking four protein bottles a day, the dietician is very pleased plus I never had to use this damned RIG feeding tube in my stomach which has been a nightmare from day one, the doctors says it will stay in place for another two months just in case I need it later!

My PET-scan is in mid March so I'm obviously anxious about that, do you have a date for yours yet?

My energy levels seem to have improved greatly and I no longer need the daily afternoon naps and with weather being not too bad recently I've been in the garden most days tiding up and getting it ready for spring, although the doctor says I've still got Neutropenia due to the chemo (this is common I'm informed) so she advised me not too leave the house and mix with other people until my immunity improves which is a pain as I long to go to the shops and talk to friends and neighbours. 

Once again I do hope you are well Mary as last time you said you were still having issues with the side effects, hopefully thing have improved since then and life is slowly getting back to normal for you.

My Best wishes.

Peter.

Hello Peter and everyone else here. 

Great to hear from you Peter. Christmas was lovely but was very challenging with food. Had the soup and mashed everything else but no Turkey or the lovely Ham....miss my big dinner, but great I was home.

Came a week later, we had New Years Day and I managed a small bits of chopped up turkey which is a great change from the steamed salmon!! So everyday/week makes a difference. 

The dietitian is happy with my process. I havent gained or lost weight so I am maintaining . Have to practice exercises for my speech. My speech is good, but feel like Donald Duck sometimes.  I'm out and about most days. We are having beautiful weather.

My mouth is very dry at night. I also have, not fully cleared, a coating on my tongue. Trying a few things to clear it.  It will take time. Drinking plenty of water is very good for me and find it helped me alot with saliva. 

I had a CT scan today and results are good, going in the right direction please God. Review again in a few months time, but didnt hear anything about PET Scan. 

Takecare Peter and All.

Mary 

Hello Peter

My name is Diane. I've been following your chats with Mary and Erica as it has given me some comfort. I think it's your smiling face that helps.  I'm waiting for MRI results that I had over a week ago, and trying somehow to prepare myself for what I think will be a cancer diagnosis, possibly back of tongue.  Is that the lingual tonsil?  I've been suffering with neck pain for months which the doctor thought needed physio. I realise now that the pain is my glands.  I have a little discomfort swallowing saliva, not food. 6 months down the line and my armpits are now reacting. It's all I've been thinking about for months and dreading the phone call from the doctor.  I too have a grown up daughter and son, and cannot imagine how I'll tell them.  The uncertainty is terrible.  Can I ask, did you suffer from a runny nose at all.  I've had this for months and have read elsewhere that this is a symptom.  Regards. Diane

Hello Diane,

So sorry to hear about the anxiety you must be going through, I know how you feel as I went through the same emotional rollercoaster myself.

I had no obvious symptoms as such and I don't remember having a runny nose, only a sore throat for over a month, but I thought it was my chronic rhinitis burning my throat which I've had for years, but one morning I noticed I had difficulty swallowing my vitamin tablets and a few days later my weight started to drop dramatically combined with hot sweats and swollen glands so I knew then it might be serious.

I phoned the doctor (no face to face due to covid) who was concerned and arranged for an ENT appointment, which took nearly three weeks, the consultant confirmed it was advanced back of the tounge cancer, it was a terrible shock as I'm in my sixties and was never a heavy smoker and gave up years ago!

It took another two months of MRI and CT scans and a biopsy for my treatment to start which was seven weeks of chemoradiotherapy, it was grim but bearable and I'm now four weeks post treatment.

I can't deny that telling my two grown up daughters was the worst moment of my life, especially as my eldest is a nurse and knew what was to come.

I wish I could be more helpful Diane, but hopefully your symptoms are not cancerous and my oncologist said that throat cancers are treatable and some can be cured which has given me hope for the future.

I do hope your MRI tests come back with nothing to be concerned about, the uncertainty must be terrible for you, but one thing I've learnt from this journey is to remain as positive and optimistic as possible.

I wish you all the best.

kind regards

Peter