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

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 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 Elona.

I'm not too bad at all thank you. 

My off days emotionally are few and far between atm. Concentration on my routine has given me better days. 

Went for my mask fitting a few days ago and Valdemort as we're calling it has been crafted they wanted to do my planning scan but they couldn't drop my IV in for the contrast so they've got me coming back this afternoon to get it done. Mostly my.own fault as I got my appointment time wrong and hadn't drank anything.. as I had to leave in a hurry (had a lie in ) they struggled. Making a point of drinking this morning! Just getting wee ones ready for school.

My therapy army starts its march 24/3/21. 1st Radio Session and Chemo 1 of 2. So got just under 2 weeks of normality before we get going. Got my Chemo pre bloods Wednesday as well.

Hope everyone is doing OK.

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

glad to hear things are ok at the moment that is great. Keep on this track. Love the name for your mask how brilliant!! Enjoy these next days and week. 

Here if you want anything 

hi Sam

glad to hear things are ok at the moment that is great. Keep on this track. Love the name for your mask how brilliant!! Enjoy these next days and week. 

Here if you want anything 

Hi Al 

hope your doing ok end of another week for you and your half way through. Hopefully not too tired that you can come on and say hi. iam in morning process of cuppa tea in bed before i get up. takes a little longer to come round these days lol must be age and the fact i have not worked for a bit hehe. 

the wether is dull but at least not raining and the hubby is having problems with getting Pedro in from the garden lol. He is obsessed with a blue ball that has handles if he is not retrieving then he is sitting down chewing it. Problem is Shugs gets too excited and barks her little head of and that scares him from coming in sometimes. 

have a virtual vet conference today and tomorrow the joys of cpd!!! have just had to download google chrome more techno to get my head round lol as the meeting platform is airmeet. 

hope to hear from you soon before i get worried. 

keep smiling 

checking in peoples 

hope your ok. 

How are you feeling?

well weird weather today sunny one minite, gale winds then hail now it looks like it wants to rain had to drag Pedro in at one point to stop him getting pelted! 

planted some celeriac, butter nut squash and sweetcorn seeds fingers crossed. 

finished my job of the day cleaned the floor in the new kitchen area so tomorrow, sanding then waxing. thankfullly only a small area. 

gave the hens some toys today after listening to a webinar on them, they now have a hanging apple and ball and an orange cone hiding some corn. Hopefully they will peck at these and stop bullying Sir Reginald.

hope your partners have good mothers day tomorrow and hear from you soon x

Thank you everyone for you kind words advice and wisdom.

I have my covid swab tomorrow ready for panendoscopy and biopsy on Tuesday

I'm trying to sort the housework out got an extra shopping delivery and my son is now off school. We have been told we need to fully isolate for 2 weeks after my biopsy no one in or out the house.

Best wishes all

christine 

happy mothers day Christine. 

you can get special delivery spots if you get stuck if you telephone the supermarket and i have with Tesco and explain that you are a cancer patient etc they will put you on the priority slots in 24 hours so you can order that way. 

good luck with the covid test it wasnt too bad I had a nice nurse do mine and she didnt prod around. 

dont know if you have ever had an anesthetic before but it is fine as long as you are not a panic like me lol. the anaesthetic is given in two stages in a canulae in the arm the first drug feels like a cold medicine going up your arm then as they are injecting the second one you fall alseep straight away. 

when you wake you feel then suckin up your dribble lol as they remove tube. there is a nice nurse sittting next to you as you wake up. There were no side effects from panescopy. 

my hospital didnt tell me to isolate afterwards so thats different but said that was the length of time it would take to get the results back. They had wanted me to isolate before the anaesthetic. 

enjoy your special day today 

keep us informed and keep smiling. x

hi Al 

let us know how you are doing we are thinking of you. 

sun is smiling on the day today brings happineess to all. advise to suck up the suns rays as much as possible and remember we are all there for you. 

be possitive and be strong keep joking and smiling at your lovely wife. 

eat more icecream !!! or those roasted vegetables! 

(i planted my veggie seeds) 

Hubby made me a joey mothers day card from the Al capone club that accumulates nightly in the carport in the of chance there is anything around!!! he then said i am now introduced to the rattus club and has named them all even made up all sorts of stories like granddad unfortunately had his hair shved by mistake so has a toupe now on top unfortuantely he lost it the other night from too much high jinks! his old banger a camper van was sprayed in all sorts of colours granma was not impressed. Then believe it or not the other night an aligator holiday bus stopped by by mistake and joined in the fun! i am due to upset them soon because the hedgehogs have gone on holiday for a few weeks while i try and recover and have the opportunity to clean the arport out properly lol. 

imagination is a good thing x

monday morning peeps the start of a new week time to be positive that this week will be good and all will go well. 

still waiting for my appointment lol but fingers crossed you never know could come this week. 

spring is here there are loads of lovely chatty birds out there to enjoy listening too. My jackdaws are back on the roof making a mess in my redundant chimney. they use this every year it must be totally full of sticks lol 

hope your ok 

keep smiling x

tuesday morning guys  nearly half way through. 

rain watering the garden hmm not good when ive got some plugs coming. hoping it might be the bulbs instead. 

house is nearly back to normal - mine means not perfect loads to do etc etc, in otherwords livable! then i can feel bit more relaxed job for day attempt to move a bookcase - not full size one lol, and only from one room into next. the phrase light at the end of the tunnel comes to mind. 

Al - please just let me know how you are. i expect your going through the darker periods of treatment - hang in there have hope. 

gotta go and have my early morning cuppa cant do without it!! 

hi 

hope your ok, its half way through gthe week dont forget I am here for you. 

am c urrently having the morning cuppa surrounded by 4 cats who are preventing me typing well laptop being pushed righ up my chest so hard to type! cats of course get prferential treatment. these are the Bengal boys (my mafiosa!) i have feet of Rumpleteaser sticking in my side, Rum tum tugger on lap hence laptop and rolo lee haggis pretending tobe angelic and washing. Rasputin curled up down the bottom. to complete the picture Shugs is on the floor flat out. 

i cooked my first meat joint yesterday for ages - slow cooked so fell of bone and no real chewing  lamb in rose harissa (so not too spicy) with coriander, mint, wine and honey. was a tesco recipe quite impressive. 

well hoping your smiling and have hope x

thursday peeps sun is promised to us at the weekend so when you are relaxing you can soak up the important rays. I am then going to try and plant some bulbs. 

morning cuppa time bit late today was up last night with bad indigestion - an unusual occurence for me so watched click at 3am. weird concept - buying the digital rights to digital art??? basicslly as you probably know the first edition has a special trace and this is what is being sold so although people can see, download etc they dont own the original not sure how that will go but is racking in loads of money!

hope the taste buds are coming back Al and you are eating ok and not loosing more weight. 

Sam and Christine hope your both ok too. 

still awaiting my referral :(

friday guys the sun is shinning its looks lovely outside. new shoots bring hope and regrowth. 

Al your treatment for the week is over so you can relax, hold your lovely wife, smile through every adversity and remember your only a couple of weeks of the end of this treatment. things can only get better.x

pedro had his feet sheared yesterday he is now getting a bit knotty but i can only do a little at a time so back legs yesterday, got it a little uneven one side goes up to his butt the other thigh ! looks like his top is lop sided! the only bit i do not touch is his head because it is a mop and i love the scruffy mop!

well cuppa time speak soon x

be strong yourselves