Hi

I think you are quite amazing. I am going to have a busy few days from tomorrow. I have also been lucky to have an efficient hospital so far. Christmas eve noticed my lump by tuesday had got bigger so went to doctors. 4th January at ENT had nasalendoscopy to find enlarged abnormla tonisl one side hard mass, non painful. Ultrasoiund booked for thursday 14th with aspiration then got cancellation for MRI tomorrow 12th then today get telephone call asking me to have a preoperative appointment for biopsy and panoscopy? not entirely sure on this one but think it is some sort of chest endoscopy., Not worried about MRI have had a few of thiose before, bit worried about aspiration and will be worried when i get date for biopsy. I am supposing that if anything shows on aspiration I may get a call to go in and discuss or wait for biopsy?? consultant said I could get call at any stage. Was not told about the other tonsil possibly getting cancer perhaps each hospital is also different. Let us know how you are getting on,. 

Hi Elona

Welcome to the whirlwind!  I am glad that I am not the only one :happy:

Thinking of you at your MRI, I too have had a few...  The noise just strangly brings back memories of the 90s raves :laugh:

Sounds like we are going through pretty much the same at pretty much the same stage.  And luckily both with very efficiant Hospitals.

I originally went to the doctors back in May 2020 with an enlarged tonsil that had a couple of white patches.  Because it was the early days of Covid and it was a throat issue I had to see a locum in the surgery car park.  She said there was nothing wrong, but may have a bit of thrush.  She subscribed Thrush treatments and away I went...  Obviously the treatments didn't work :laugh:

I didn't know I was having the good tonsil (only the good one, with biopsy of cancerous one and tounge biopsy) removed until the day of the op.  Didn't even know I was down for a tonsillectomy until I was at my pre assessment.  The Nurse could find no info on the system...  As it turns out there were two perfectly good reasons.  I saw the dental surgeon (One of my MDT members) at my ultrasound and he told me that they were a victim of their own efficiency and that the op could change right up to the moment before I have the anesthetic.  Hence lack of info.  I don't mind, I'm just so impressed with everything.

What is an aspiration?

Let me try and put your mind at rest about the biopsy.  I had a fine needle biopsy which was done under local anesthetic.  This was a biopsy of the lymph nodes taken through the side of my neck. I could feel them pushing around, but no pain.  After the anesthetis wore off it was a bit uncomfortable for a day at the most.

Under general anesthetic I had a deep tonsil and tounge biopsy.  This was at the same time as having the right (good) tonsil removed.  All the staff were brilliant, the surgeons came and saw me pre and post op explaining everything.   Ooh and the bed was soooo comfortable.  I was left with no pain or discomfort from the tongue and deep tonsil biopsy as far as I know.  This may be due to the overall pain and discomfort from the tonsillectomy disguising anything from the biopsies.

All of my appointments were made via phonecalls or I was sent for a test whilst at the hospital having something else done.  

How am I getting on?  The throat is still sore from the op, but the pain is very managable.  It's a great excuse to eat icecream  :wink:  I wont lie there are moments of Ahhhrrrggggg!  But they do not last long.  Earache now in both ears Boooo!   I have been living with an invisible condition, for a few years, that causes a lot of unnecessary pain daily.  So me and pain are good ole friends, he is annoying but without him I wouldn't be here (I have no idea why I made my pain male) The trick with pain is to find other, better, happier things to occupy your mind.  Hence I've written so much here, whilst writing this my pain is dampened.

Keep in touch, as we are in such a similar position.  It'll be interesting to see how our treatment paths differ or assimilate.  It'll also be a good and informative read for others who pass by.

Take care, be strong

Hi Al

Bit concerned have not heard from you, hope you are not too tired, fed up, feeling c... etc. Thinking of you. 

rain today gloomy here. We trested ourselves to a chinese last night, first time in months and months. It was lovely but this infection has affected me because i cannot like you cope with the spices any more and that is a disappointment. will have to find a way to water down the curry!! - cant have yogurt/cream etc so will mix in with loads of rice lol. 

take care will check in later x

Hi guys. Hope you're both OK. 

Some positive from your Call Elona. Praying you're Cancer free!

DF: Sounds like you're pushing the limits. Keep strong and hope you feel better over the weekend.

Admittedly it's been a strange week or so. I finally finished work a few days ago in a blaze of tears. Having worked full time since I was 18 and 13 of those years within the NHS, I feel gutted having to stop. 

My mental health is a bit better than it was. I made the decision to end my Sertraline treatment as it wasn't right for me. I was stuck in negative mode, so many negative emotions were having a massive impact on my good lady who has been my rock these last few weeks. My underlying fear still exists but outside Hospital appointments keeping normality is keeping it in check most of the time. 

Admittedly, still scared about the what if's and beginning treatment. But I feel more in control over everything. Got everything in place, dental is sorted and awaiting to get my Skin treatment also, I go Monday for planning and mask fitting, then 1 further appointment next week and then I guess we wait till I'm called to start which I guess will be the following Monday.

Been eating and drinking pretty well again. Not feeling sick at the sight of.food since stopping my Anti depressants. Sleep is coming pretty easy again too. Albeit some mornings I'm a bit fearful.

I have a few hours free this week so I'm going to enjoy my hobby of flying Virtual Airplanes around the UK and Europe

Love to you both.

Hi Sam

So glad to hear from you and so happy to hear that since stopping the tablets you have been brighter and eating better. You will need to maintain that weight so eating is important. Stock up on all those favourites! 

It is always scary when you have to do something new to yourself. People would probably say that due to your job you should be used to surprises with the never knowing what to expect but I think it is always different when it is yourself involved. When I went through my tests my blood pressure rocked lol and I freeze!! they tell me iam a good patient its because iam petrified lol. I shall be nervous when i get the next lot of appointments! 

Definately enjoy your hobby. It is important to have something to make you smile as well as family. I have a policy to do one thing each day have mentioned it before but it works for me otherwise i wouldnt bother but it can be difficult to get motivated. I love gardening and painting but have not done either recently so i have done a job around the house instead that has needed to be done like painting a skirting board - not exactly a wow but it gives satisfaction when done. 

Let us know how you get on with mask fitting etc. Al says it is quite comfortable. 

take care 

x

Hi Elona

So sorry I've been so quiet,  I knew you would worry.   But still I did not have the wherewithal to let you know l was OK.  

I was having a glitch, a kink in the path.  Trouble with this 'c' thingy is it constantly throws curve balls at you.   And its not like you can practice,  get it wrong and then get it right next time :happy:

So happy that you're food is becoming much more varied,  and Curry Yum!  Food is very important for happiness.  Happy belly, happy brain.  Happy brain, happy wife.  Happy wife, happy life :happy:

I too think that when the time comes it'll be Kormas for me.  Although have you tried Butter Chiken?

I have all but lost my sense of taste now.   Not is all lost though, my absolutely amazing wife and I (I do have her permission to take some credit lol) are testing out a method of still attaining some pleasure from food without the need of taste buds.  Its kind of  worked the last couple of days, if it works again today I will reveal all.

I know how to keep the suspence haha!

Radiochemo, 2 weeks down 4 to go.  Unexpectedly its the chemo I'm finding harder than the radio at the mo.  But I have been informed that that will change lol.  

Watched a beautiful frosty sunrise over the mountains this morning,  from the centrally heated comfort of my living room I might add.  Now its gone dull... boo!

Hope the weather is brighter in the East.

Al

Hi Al

so glad I got your reply as yes have been thinking about you. 

My motto - take one day at a time. an old favourite and one thats true. after all we never know whats round the corner. - hope! 

i hate suspense!!!!!!

telll meeeeeeeeee!

thick frost last night could not believe it thought we were entering spring hmmm .... blowing bubbles.....

dull today too but suits am very tired. 

glad your telling your wife how amazing she is. Behind a great person is a greater person! 

stay smiling 

apparently someone wrot that a spoonful of sesame oil before eating helps taste buds and this person had recovered taste after a few days ???? dont know if thats worth a try x

checking hoping your ok 

had to get the charity to take my hedgehogs as have not got the energy to look after them at the moment seems strange outside now. 

Rodney is still on rat protrol though looking out the window lol. 

Pedro is disgusted with me cant sleep got over tired so watching most haunted - love a ghostie and writing this. i have had the evil eye  dispite the fact he is sprawled all over my bed leaving me very little room for manoeuvre. 

new sloppy food - smash and mushroom cuppa soup mixed together quite nice lol. love cooking but no interest today, thankfully the hubby didnt mind. 

keep smiling 

hi the sun is shinning get some rays if possible and soak up those vitamins. 

hope all going ok. x

lymph node being pain today, sore, red and uncomfortable,. did some painting but cant be arsed!!! good job i make myself do one thing a day or i would not bother. 

hi 

hope everything is going ok. still waiting on my referral to respiratory clinic. apparently my diagnosis is necrotising granulomatous inflammation - what a mouthful!! basically means my body is killing itself lol i have had something harmful and the body has tried to but failed to get rid of it so its causing the tissues to die. thats why i had to have my tonsil removed. 

well rainy day today what joys but thankfully the dogs are giving me a few minutes peace and quiet. the hubby is having a snooze - i should try that - but still dont find it easy. pottering this morning now come over tired so doing zilch! i hope the same is with you. 

so exciting yesterday i won £10 on the postcode lottery lol i was thrilled havent won anything before!! 

well Al your half way through arent you three weeks so the light must be showing at the end of the tunnel, rest easy 

Sam hope your doing ok

take care 

Hi sorry to jump on this post but it seems like your all going through what the docs think I have. In a 36 year old Female

I have a widening of the base of my tongue a swollen tonsil with growths on and a lump inside my throat  all found on a ct scan for something else. Two weeks ago.

I had an urgent E.N.T last Monday was great he said he wasnt a 100% but it was highly likely it was cancer.

Yesterday pre op on phone

Today pre op in hospital ecg bloods Mrsa swabs etc etc

Sunday covid test

 Next Tuesday 16th panendoscopy and biopsy in getting put to sleep.

Do you guys know the recovery time like eating etc as I have a teenager at home who I need to look after

Thanks c

Hi sorry to jump on this post but it seems like your all going through what the docs think I have. In a 36 year old Female

I have a widening of the base of my tongue a swollen tonsil with growths on and a lump inside my throat  all found on a ct scan for something else. Two weeks ago.

I had an urgent E.N.T last Monday was great he said he wasnt a 100% but it was highly likely it was cancer.

Yesterday pre op on phone

Today pre op in hospital ecg bloods Mrsa swabs etc etc

Sunday covid test

 Next Tuesday 16th panendoscopy and biopsy in getting put to sleep.

Do you guys know the recovery time like eating etc as I have a teenager at home who I need to look after

Thanks c

Hi C

Even though my results are now going down a slightly different route i went through all the same tests. It is incredibly worrying but you have to remain positive until you get the final results. Good luck. x

As for eating well your mouth will be sore and even though the consultants say try and eat normally it is not easy. I ended up with the panenscopy and tonsilectomy and that was incredibaly painful for nearly three weeks. Ice packs are ideal!!! A biopsy should get over quicker. 

soft food is a must you can eat but it tends to be easier to have softer food available, - ice cream that is left to sliughtly defrost for a five mins before eating as Al put in one of our blogs, wotsits are great they melt in the mouth - i am still eating them!! soups, smash, cauliflower cheese, what you can eat will vary on what you like and how your mouth feels. Nothing spicy though that can irritate and cause upset. 

if you want to ask anything please do we are here for you. 

Thank you so much for your reply I feel totally alone in all this it nice to know there are real people going through the same thing

Hi C

you are never alone on here and are welcome to our thread any time or all the time i come on daily to check in. 

take care 

Hi ccec.

It's natural to feel this. For the first 2 weeks after my diagnosis I literally fell inside myself and became very very much close to depressed. I didn't want to hear what I was being told. All I could hear was Cancer.

From experience on here there's quite a few of us that have this somewhat unique Cancer. There's also a massive scope of ages. I myself am only 32 and until this I was perfectly healthy working 50/60hrs a week on an NHS Emergency Ambulance.

I'm now just under 2 weeks from starting treatment. Albeit I was lucky and had no major Surgery close to starting Treatment and all my teeth are healthy!

Albeit I didn't initially practice what I'm going to say... if it does turn out to be Cancer...

Listen to what you're being told by your team, take it in and take time to process it. Don't get hung up on the negative things because its the positives that will push you through your first few weeks.

If you don't understand something... ask! Write down questions as you think of them.

Have someone with you, partner/family someone to help with listening. Inspite COVID they should allow this if it becomes an Oncology issue.

Give yourself time to cry if you need it. The emotions good or bad are part of this so you have to take time to experience both.

I have been given a good prognosis now that I've had Lymph nodes removed, I had these lumps in my neck for about 12 months with NO SPREAD anywhere else. So now all that's left is a 3ish CM Primary in my Tonsil. I was told I could of been looking at 2 or 3 types of Chemo but because they're satisfied 1 on day 1 and 1 day 15 with the Radio should CURE this. Alot more oral Cancers are bring caused by the HPV Virus which is what a good few of us have make it alot more responsive to Chemoradiotherapy. Literally my team have said they've watch these things melt away within a week.

Its a scary process to be facing. The thought of therapy has me scared! The side effects I'm choosing to see as payment to get the chance of having my life back. That is what is keeping me pushed.

I plan to stay active. Mrs has a housework list ready for me as well as for as long as I can I'm driving to my own radiotherapy appointment. 

I hope that this helps, find some good, find a reason to push and hopefully you'll feel better if it turns out to be Cancer.

Take care 

Hi Sam

I've been away from the thread for a while, 4/5 weeks I think.  Fell down a rabbit hole.

How are you getting on?  How far are you with regards to treatment?  Loving the name of your mask, I found the mask fitting and strangly the radiotherapy quite relaxing.  I dozed off on a couple of my radios :laugh:

I and others would love to hear from you if you feel up to it.  I for one totally understand if you do not feel like posting to the thread right now.  I've been there.

Stay strong, stay positive

Al,

Hi ccec84

I'm Al' the author of this thread.   I have been away from it for a while, fell down a rabbit hole.  I have/had T2 tonsil cancer, spread to nodes and surounding tissue.  I had to have many biopsys, an op to remove my good tonsil, 6 teeth removed and I have just completed 6 week radiochemo treatment... Phew!

I was reading back through the thread and noticed a coule of posts from yourself.  We would love to hear how you are getting on.  I appreciate no matter who you have around you it can be and feel like a lonely place sometimes.  Here you are amoung others who understand, you don't need to feel or be alone.  Like I said I started this thread, but didn't add to it or even read it for many weeks, I went inside myself.  Fortunatly the wonderful Elona and then Alli kept the thread running and was here for all.  And everyone was still here and accepting when I felt able to return.

I do hope that you return to the thread at any time.

Stay strong, be posititve and take each day at a time.

Al'

Hi Al 

Yesterday I got the results for the lump on my epiglottis it was a mucous retention cyst and not cancerous now I need further tests and biopsy for lumps that have appeared on my tonsils so bitter sweet news.

The tread has kept me going through the last 6 weeks which has been a lonely place.

Regards 

Christine 

Hi Christine, 

please never feel lonely we are here to talk to all the time through thick and thin as they say! I am glad though the thread has kept you going that is the main aim of mine. i believe distractions are a good thing and smiling even better it helps raise the emotions from that dark place to the light. 

iam so pleased that you do not havve cancer but a cyst and fingers crossed the other biopsies will be the same. keep positive this is a good sign. they tend to do biopsies of other lumps just to double check themselves even if they think they know the diagnosis, they did that with me. 

the sun is out so try and enjoy your day with out thinking of anything too much .

stay strong keep smiling x

Hi Christine

I am so glad that this thread has kept you going.  Please feel free to add to it at any time, A post doesn't even have to be about anything in particular.  We have had many conversations on here about D.I.Y.  Bird tables, veg growing and many many other things other than our selection of diagnosis.

Of course you are more than welcome to just log in and read, what ever works best for you.  Because it is 'you' that is important right now.  Just keep in mind you are never alone here.

Good news on your first results, fingers crossed for the biopsy and test on your tonsil.  As we all know on here the waiting for tests and results are the worst times.  The best advice that I had from my oncologist and the hospital was 'take each day at a time'.

Be positive no matter how hard it feels, stay strong.

Al'

Taken me a little while to want to put something up. Admittedly the last couple of weeks have been extremely difficult. 

My first Chemo and few weeks of radio went OK. My First Chemo I had a few days of Nausea and felt OK. I continued to drive myself to my Radio appointments daily until last Wednesday and my 2nd/Last Chemo.

Strange really as until 2nd/3rdweek I was eating normally still.

2nd round had me vomiting continuously for a few days, the day before I'd had my nasal feed tube fitted which I then proceeded to vomit out several times! They tried to use a bridle to secure it just wouldn't fit.

The Thursday continued to be bad, was taking my Anti sickness and even had the DN come out to give it via injection but we just couldn't get on top of it so ended up as an admission to the Emergency Assessment Unit.

I was given a plethora of Anti Sickness over the next few days and eventually my NG Tube was refitted. Began feeding again at a decent rate last day or so, struggled with it over night so, only feeding during the day.

I'm taking my meds orally now. Been given a combination of Anti sickness and Anti secretion medication as mucus has turned into a big problem with the wrenching. I'm having the odd glass of milk as a drink as well as a means to take meds. Things like nebulisers are helping me too.

I have another 7 Radiotherapy treatments left... I am however still in hospital. There was a bit of concern over nutrition but hoping feeding during the day Will sort that.

Mouth feeling a bit worse for wear. Lots of thick icky saliva and dry mouth.

My mental health has been very much up and down, spending too much time in the down position unfortunately. Trying my best to see ways around that. I'm fortunate to have amazing staff here.

My other half has been visiting almost daily for an hour which does help.

I did lose a fair whack of weight (was about 150kg when I started, always been a big lad) I'm now around the 135kg Mark, was rescanned a couple of days ago and given a new mask.

I have had some optimism, I can no longer feel it in the back of my throat, the actual anatomy of my mouth and throat feel normal. There was some indication in the first couple of weeks from the radiologists that with adjustments they were making that they believed it was indeed getting smaller.

Very much missing home, my girl, my step kids and my cats ready to be back there.

Decided to take some positive and booked me and my good lady a Trip to NYC in February, first class tickets and 4* suite for 4 nights. I'm going for the 4th time (I have so much FDNY merch it's ridiculous!) And the second time for my other half since we went 4 years ago when I proposed to her. Told her were going but she doesn't know were travelling in style this time