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

Morning Al hope your doing ok, its week 5 so nearly the end of the treatment the light is definately at the end of the tunnel. the sun is shinning here s lovely sight to see we need the spring makes everything feel better. 

no news on my referral think i have been shoved to the bottom of the list as unimportant now thats worrying but keep hoping. 

the mafia have become brave there obviously is no food about they are trying to gtet on my bird table now to eat theiur seed, hence i have not seen many birds, :( went out with my psoriasis crem and smothered the stem hoping it would help - based with liquid paraffin and didnt have anything else but looks like has not helped much. will have to try and think of something else. cheeky buggers saw one run across the garden yesterday. 

keep smiling and keep strong minded. you can cope with anything we believe in you 

Morning Al and all, 

hope your all ok, wole up feeling a bit rubbish this morning the infection must be having a bad day lol. 

started shaving Pedro a bit more yesterday since his goldden doodle fur is awful - the retriever and poodle furs matt and form a thick coat so it often needs shaving. its very hard to do and ususally i hve to do it in stages so 

stage 1 the feet dip - a shave feet looks good and sensible to keep feet clean 

stage 1 the sheep shave - a more radical leg shave leaving a distinct sheep look about him

stage 3 the lion cut the *** has been clipped and back side so a mane is left across the shoulders a nd head 

stge 4 begins today the mop head this leaves the top of the head un touched because the fur here is exactly like a mop and does never get touched if it did it would get matted like the rest of the body. here the shave finishes. 

oh i had a staring competition with a little mafia boy so cute but despite my creaming the bird table was sitting on it eating bird seed cant be good for him. 

have a good day 

keep strong and smiling

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

Hi Sam

So sorry your having such a rough time of it hope your ok from here on just keep thinking of that fabulous trip away, its my turn soon going to start treatment in a couple of weeks after dental stuff sorted I'm having 30 rounds of radiation and 2 sessions of chemo mine is called carbaplatin, what is it your on

Take care

Alli x

Hi Sam

Lovely to hear from you but sorry you are having a hard time of everything. Its good to see there is that optimism and hope for booking that wonderful holiday definately something to look forward too wow! and what a place to propose in coo you have a lucky girl there. 

glad you are nearly at the end of your course of treatment thats positive and that your mouth is feeling normal thats brilliant news. you must be pleased with that. Hopefully the nutrition and weight will sort itself out so you can get back home to the family. Bet the cats will love purring up to you. 

Try and get as much rest as possible - not so easy in hospital - but try so you can recover well. Keep positive and think of something like your holiday to look forward to, it is to be expected you would feel down so dont worry we are all here for you - even if it is to read the news and not to reply. 

smile at your foe and it will smile back. 

never give up hope. 

take care x

Hi Sam

Lovely to hear from you but sorry you are having a hard time of everything. Its good to see there is that optimism and hope for booking that wonderful holiday definately something to look forward too wow! and what a place to propose in coo you have a lucky girl there. 

glad you are nearly at the end of your course of treatment thats positive and that your mouth is feeling normal thats brilliant news. you must be pleased with that. Hopefully the nutrition and weight will sort itself out so you can get back home to the family. Bet the cats will love purring up to you. 

Try and get as much rest as possible - not so easy in hospital - but try so you can recover well. Keep positive and think of something like your holiday to look forward to, it is to be expected you would feel down so dont worry we are all here for you - even if it is to read the news and not to reply. 

smile at your foe and it will smile back. 

never give up hope. 

take care x