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

My swallowing and neck were definitely affected after mine, so I don't think it is in your head.  Only lasted 2 or 3 days though.  Still can't believe you did it with no local.

You're right my wife is an angel she is an absolute rock.  I'm very lucky in that I have a very strong and supportive family. That said this chat room has been an absolute life line.  The Internet at it's best.

Well its 7am Sunday, 28hrs to go... Not that I'm counting.

Dragon FAch

your right this chat line is a life line and a reassurance too. 

not long now know you are counting lol i am to friday lol, not worried about it and wont be until the day but more concerned i get tested for covid before hand and cant have it done even with precautions. 

will be thinking of you. 

Hi Elona 

I too had everything crossed for a negative Covid test, fortunately I got one.  I have to have another one soon pre radiotherapy etc.

Appointment went well today all things considered.   I have a common cancer, can't remember its full title only the letters SCC and its HPV +.  HPV responds particularly well to treatment.   I  don't know size or spread of cancer yet.  I will be seeing oncology end of next week where I will find out more.  Including how much radio and chemo I will need.  I have been told to expect 6 weeks of radio (30 sessions) and that I may need a feeding tube depending on how radiotherapy goes.

No more ops for now, though may have to have teeth removed pre radiotherapy.   May have to have some lymph nodes removed post radiotherapy. 

I do have a McMillan nurse who specialises with head and neck assigned from today.  Oh and within the next 3 weeks I have to see a dietician and a speech therapist.   

I think that's everything,  phew!

In a nutshell the prognosis is good, but the journey will be rough to say the least.   Onwards and upwards :happy:

Hi

I have been thinking about you all day and wondering how you got on. SCC squamous cell carcinoma- HPV+ yes thats the best sort to have apparently so prognosis hopefully good. I am glad everything is explained and hoping all goes well. Keep in touch. Sounds like a long slog but you sound the sort of person who has a lot of determination and courage I admire you. 

I am still surprised they do not take out the bad tonsil. at the vets we would then chemo the rest if necc. 

Covid test booked for wednesday am. - and bag packed for friday lol . 

Thank you Elona,  all good thoughts I hope :laugh:

I too had my bag packed well in advance of my op lol.  I would like to take credit for being so organised,  but the award goes to my wife.  She's even turned our bedroom into a mini bedsit in case i become too fatigued to make it down stairs.  Truth be told I would be useless without her.

They say there is no such thing as a good cancer, but you are right Squamous Cell Carcinoma HPV positive is apparently the best sort.  They way I explained it to family is if there was a shelf of neck cancers and i had to choose one, that is the one I would choose. 

I too was surprised that they do not take out the rogue tonsil.  They did say that the cancer is too close to the tongue.  I suppose they want to avoid having to remove part of the tongue,  which can only be a good thing.

You work at the vets, that must be so rewarding.   I always wanted to work in animal care as a child.  Never happened though.   I  find animals amazing,  they give and expect nothing in return.   We have two dogs, two cats and 5 birds!  One of my dogs thinks she's my nurse lol.   Keeps trying to make my neck better.

fingers crossed your covid test comes back negative.   I will be thinking of you on Friday.  Though you wouldn't wish this on anyone it's so good to be able to chat with someone who is travelling a similar path.

Be strong 

Hi Dragon Fach

your wife is amazing that is so good. What a great idea to have your room also made into a sitting room in case you get too tired. 

my lump on neck has been a bit itchy since aspiration it has now turned into a circular red lump externally. it feels drier and slightly rubbery so perhaps this is going to be different? my face on that side also feels a little tight like i have an alien there.lol 

anyway I hope you are getting plenty of rest you will need it and as you said it is good to have someone in similar circumstances to talk to on this. With other people able to join in or read we can share experiences. 

working at the vets has been rewarding but hard it is not the glamour job a lot of people may think. However, it has also meant I bring home lots of waifs and strays lol. Currently two dogs a golden doodle that was dumped with his litter mates at 4 weeks skin and bones, a patterdale whose mother was rescued from Battersea and the owner then found she was pregnant. 6 cats two of which are totally blind having had to loose their eyes because horrid boys threw them at a brick wall. Koi in a pond I dug out by hand when i moved here, three hens and a pigeon who is part of their harleem! even if he is a male lol then the tortoise!!! oh and I forgot the hedgehogs that i look after for a charity I am part of. 

the thing I am more disappointed about and I know it is only temporary is that i want to take dogs out instead of having to self isolate indoors until friday. 

take care

covid test done - if no telephone call am negative and all steam ahead for friday. relieved because you never know what to expect but nice nurse and was only a little uncomfortable trying not to gag when she swabbed near tonsils. 

Fingers crossed its negative.   I was lucky and had the result the same day.  I am very much hoping my tonsillectomy has cleared up a bit more before the next covid test.   I really do hope that all is go for Friday for you, there are so many tests, results, ops, appointments to wait for the last thing you need right now is for covid to extend the wait.

I had a call from my ENT surgeon and Cancer Nurse today with a list of info and appointments to expect over the coming couple of weeks.

Appointment with oncology.   Appointments with speech therapist and dietitian.  Pre treatment PET CT Scan. Appointment with a financial welfare advisor.  They also told me that the cancer is T4 as its sneaked into surrounding muscle.  It is also in nodes, but I forgot to ask how many.  Apparently I will be having 6 weeks of Radiochemotherapy with a stand alone chemo the day before.  I think that's it Phew! 

 So be prepared, once it starts it starts and all the info makes your head explode.  This is one of the reasons for the cancer nurse, to answer any questions that you may have.

Stay strong

Hi Elona

Just wanted to wish you good luck for tomorrow.   I will be thinking of you.

Al

Al 

Thank you. I go in at 12.10 admin tomorrow. No news re covid so must be negative. I have been so careful about isolating too although a friend came round and let dogs out for me. Husband cant walk them in wheelchair. 

I am really sorry yours has come back as T4 having started to invade tissues but will keep positive for you that all goes well with treatment and will be on here for chats if your not too tired. 

It sounds like an array of diary appointments wow its been enough this far lol. 

Strangely I am not worried about tomorrow yet just hope they get it sorted. Covid test made me a bit hoarse yesterday. 

Al 

Thank you. I go in at 12.10 admin tomorrow. No news re covid so must be negative. I have been so careful about isolating too although a friend came round and let dogs out for me. Husband cant walk them in wheelchair. 

I am really sorry yours has come back as T4 having started to invade tissues but will keep positive for you that all goes well with treatment and will be on here for chats if your not too tired. 

It sounds like an array of diary appointments wow its been enough this far lol. 

Strangely I am not worried about tomorrow yet just hope they get it sorted. Covid test made me a bit hoarse yesterday. 

Hi Elona

I hope all went well on Friday and that you don't feel to groggy or in too much pain today. 

I have some good news Yay!  I was called in for a PET CT Scan on Friday, there's a lot of waiting around with those.  If you have one make sure to take something to keep you entertained for an hour and a half.  It takes that long for the radioactive glucose that they inject to do its thing.  

Had that at 10am, left hospital at 12.30.  Oncologist called at around 4pm with results... No cancer anywhere else, phew.  But then he went on to say that they think I may have covid as I have inflammation of small areas of my lungs.

So off l go at 5pm for another covid test.  This morning given the all clear again for covid  yay again.

Of course this does now beg the question 'What is up with my lungs?'

This journey is such a roller coaster  isn't it.

Wishing you well,  be strong 

Hi

Goodness me what a rollercoaster isnt it! good news on the covid - could the inflammation be due to your health condition? My hubbie has a lump on his lung turns out it is scarring so fingers crossed nothing to worry about - good news on the PET scaN. 

well went in yesterday got fast tracked into a private hospital and it was lovely individual room, en suite, tv etc and lovely lovely staff. 

the MRI apparently had shown that everything was stemming from the tonsil so they descided to remove to the whole bad tonsil and leave the good one because as my consultant said in his knowledge it rarely spread from one to another so wasnt worth removing both. 

No cancer cells had shown up in the aspiration they took but he said that didnt always mean anything so the tonisl has been sent away. He was very cautious. 

I ended up having to stay in because my oxygen dropped and my blood pressure highered so they were not happy with me and the night was up every hour to pee lol and feel grotty. 

The throat is quite sore but I have good pain relief for my back already so it could be worse. 

Currently dont need the diet because I have not been able to eat much swallowing hard and feel choked occasionally not a pleasant experience. If I need a feeding tube I am going to be a nightmare as thats scary not being able to swallow. Anyway the wait begins for these results. 

Consultant said I may have to go back for my lump because it has remained red. slight headache and tired so bed day today. 

stay strong yourself and take care 

well three days in and the throat feels no better the pain killers dont last long enough so 4am seems to be the hour of the day thats the worst. So tired still has totally drained me. 

Hope Al you are getting on ok? as you said yourself stay strong 

Hi Elona

Sorry I've not been here for a few days,  fatigue hit...  I  think everything just caught up with me.  

Look at you with your private room, too right too you should be treated like Royalty 

I am so glad that your op went well and that they were able to remove the bad tonsil.  Hopefully they got it all.  And thank goodness your aspirations came back clear.  I expect they'll all be sending you for a PET CT Scan next.  Fingers and everything else crossed for encouraging results.

Its funny how different consultants work different ways.  They couldn't cut my bad tonsil out as the cancer had started to invade surrounding tissue.   I did check with ENT regarding the good tonsil and they confirmed what you said that there is only about a 1% chance of the good tonsil becoming cancerous.   It must have been the morphine after the op that confused the info in my head... that's my excuse and I'm sticking to it.

So still not really sure why they cut it out.  I will get to the bottom of it one day.  Not too bothered though as I do know that adult tonsils are pretty useless. 

I so feel for you right now. I  too had the advantage of pre prescribed pain killers, but was still up all hours with the pain and discomfort.  Looking toward the next hour that I was allowed to take more pain relief.  Did your consultant warn you about day 5/6?  It does get better I  promise you, but I won't lie it gets worse first.  

Towards day 5/6 ìt starts to feel remarkably better, not great but better all the same.  It leads you into a false sense of security and then it hits... Two to three days of 'i want it to stop now!'   But stick with it, it gets better quite quick from there and before you know it its just a bit of discomfort.   I found ice cream a very good soother.   

We saw the oncologist at the cancer centre yesterday (Tuesday).  I now have two specialist nurses, starting to feel quite important haha.  So this is the plan...

... I have to see a special dentist at the centre,  should hear from him today.   If I have to have teeth removed,  which I expect I will,  they will not start Radiochemotherapy for 10 days.  This is to give the gums time to heal.   I have to go in pre treatment to have a mask made and to pre align the radiotherapy machine with my cancer.   

They are hoping to start treatment two weeks Monday.   Each Monday I will have 6 hours of chemo and each week day 10 minutes of radiotherapy.   This will last for 6 weeks.    Also learned that they are zapping nodes on both sides of the neck with the radiotherapy. 

After the 6 weeks I will have another PET CT Scan.  They don't like to talk too far ahead and told me to take each day at a time. 

All goes to plan I will be sent back to ENT after around 4 months.  ENT will keep me in check for 5 years post treatment. 

Oh nearly forgot the chest.  They are going to get some other experts to look at the scans again today (Wednesday).  They still think it is the remnants of covid.  Strange though as I  had two clear tests in 3 weeks and neither my wife or daughter showed any signs. 

The saga continues...

Well this was a longer post than I anticipated, hopefully it'll take your mind off of your throat for a few minutes. 

Stay strong  stay positive... it will get better

Hi Al

so good to hear from you. Sounds like you have a real adventure ahead from the way you describe things i am glad you have possitivity and bravery.

Well am at day 5 and i can hardly eat. you are spot on i wait for the next round of painkillers lol and am still so tired. I didnt get morphine you were lucky lol they expected me from day 1 to swallow tablets. the consultant also said i should eat properly - hahaha no chance! i have ordered some ice cream and more smash lol. 

My neck became infected yesterday only lasted a short while but although it has gone down outside my neck in size is still hard and quite big internally. glad on antibiotics. 

after everything you have gone through am not in the least surprised you are tired we dont realise how stressful this can be even if we do not feel stressed. I think this contributed to my blood pressure alongside any infection present. I have spent this week between a chair in living room and bed. 

rest as much as you can 

well a week on now and throat does not feel any better. It hurts when i swallow and feels like there is something there - maybe scab not come of yet. 

Neck is still swollen on outside still like a cardasian! 

hard swollowing tablets too and the antibiotics are huge! Fed up with how I feel didnt realise this tonsilectomy would be so awful would not wish on anybody. 

cant even have a drink lol 

on the plus must weigh myself am sure must have lost some weight! 

A neck like a Cardasian!  lol :laugh:

I came on to find out how you were not realising that you had posted only yesterday pre answering my question, typical woman knowing the answer before the question lol.

Sounds like you are really going through it, I feel for you. Why do they make antibiotics so big? Makes me realise how fortunate I was with mine. That feeling of something in your throat is very common, I still have it now 22 days after the op.  The amount of pain that you are in I think the scabs have come off, I believe that's why the pain worsens after around the first week mark plus having the infection wouldn't have helped.  When do you see ENT again?  I would give them a call, especially if it is preventing you from drinking, you need food and drink to keep your strength up to get better. Promise me you will call ENT as I am worried about you now....  I will be checking.

Talking of weight loss, each time I see a Dr or Nurse they ask if I have lost weight, I answer very sadly 'No, it's a shame as I could do with losing a few pounds', they never seem to see the light side of it.  Looking forward to seeing a 6 pack again, not seen that since I was 18....  33 years ago!

Everything is still roller coastering, I am so tired.   Had a call from both the cancer nurse and the dentist on Wednesday booking appointments for yesterday (Thursday). 

Video call on Thursday morning with Cancer Nurse, Dietician and Speech Therapist which lasted over an hour.  I now have all these jaw and throat exercises I have to do each day. It was a really useful and informative chat with them all.

3pm Thurday I had to go to the fourth hospital this month to see the resotrative dentist.  Thought I would be there half an hour.... Nope! We should have learned by now lol (5:30 we left) .   First he explained his roll and why they remove teeth pre radiotherapy.   Told me that they will have to remove 6 teeth including a wisdom tooth.  He also gave me two tubes of super floride toothpaste (Duraphat 5000) which I have now to use forever and can only be replaced by perscription.  I then went down the corridor to an hygeinist who gave me a filling and cleaned my teeth within an inch of there lives.  They were all lovely.  I am back at the hospital today (Friday) and Wednesday for the extractions.  I did ask if the could do it all on the same day, get it done and dusted, but they said no.  Apparently  thats mostly down to having to have the wisdom tooth removed.

Onwards and upwards!

Take care, be strong...   Call ENT :wink:

Hi Al

EEk the thought of six teeth removed - and i wisodm tooth makes me cringe you are quite amazing. 

No have not phoned ENT but managed a tiny amount of scrambled egg and since it takes 2-3 weeks will give it that long. 

Last night was the worst night I have had kept me awake nearly all night with agony still cant wait for tablet time! 

Another appointment for 8th Feb for more biopsies on my neck lump. Apparently the FNA aspiration was inconclusive so they are going to take proper biopsies under local. Must admit lump has gone down quite a bit so was obviously infected. 

First appointment next thursday for blood clotting screen at doctors. 

Mind you before that have to get car sorted lol been sitting it now has a flat tyre and suspect slow puncture grr never just one thing is it. Have ordered a cheap air compressor from amazon to pump it up to get to a garage. too tired to sort out today. 

you take care and try and rest up. you need your strength too. 

looks like i am in for another bad nights sleep but who knows painkillers in an hour. 

i think i may have been doing things wrong - read should have painkillers 30 mins before food (although mine say must be taken with food?) can try this tomorrow. i wince everytime i swallow but did manage smash and little soup for tea. 

last antibiotic tomorrow too so will be interesting to see if any changes occur. 

oh well of to watch new tricks 

4.30am, thought I would join you with the symphony of pain... Who needs sleep anyway lol.  Though to be fair if pain level was an Olympic sport you would win silver and I would be there just to make up the numbers....  Saving gold for week 3 of radiotherapy. 

So glad that you have managed to eat, good sign that things are going in the right direction.  You will be back on solids before you know it.   I found bread was good to help with that, you can swallow it as small or as large as you like, plus it helps to clean your throat and improve recovery. 

Can't believe you have a puncture!  Thankfully it's slow... online shopping has really been a thankfull game changer and life saver hasn't it... I'm going to have to watch that I don't find an addiction with it lol.

One of the dogs is very happy that Daddy is up and totally believes my sole purpose for being up right now is to give her cuddles.

I was so happy yesterday that the weekend means no appointments or phone calls, 2 days of lie ins and chilling, some much needed rest...  Sadly Dr Pain has other ideas.

Well Friday they were going to remove 4 of the 6 teeth leaving two for Wednesdays appointment.  Lost count of the amount of adrenaline injections, local anesthetic doesn't always have the desired numbing effect on me.  Three teeth came out fine, though I could feel one and two had to have the gum cut and stitched.  They didn't want to extract the third as the anesthetic hadn't taken completely,  but I got to the point where I just wanted it out lol.

The pain with the fourth was simply too much,  works out that there is an infection which prevented any chance of numbing in that tooth.  So later today we are off on an adventure to the pharmacy, script in hand, for two lots of medication for the infection... No idea why two,  can't read the writing on the script to look up what they are.

Looks at clock, not too long till the next lot of pain killers now. 

TV has become my new best friend.

To infinity and beyond!