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

finally 16 days post tonsilectomy I am finally getting control of pain and eating a bit better - sloppy mince and smash being the latest yay! still prefer not to talk but thats ok. 

loads of to and fro from hospital yesterday sorting out mondays appointment - had to find a lift to the hospital in case neck goes in spasm after biopsy apparently. finally sorted so now to try and have a relaxing day before then 

hoe your ok AL 

tried bread today can eat it but. struggle to swallow, also some jaffa cakes they were a bit harder due to the sharpness of the jam. you learn a lot. thankfully pain has resided to a very sore throat rather than sharp pain. very annoying. 

hows your mouth AL. 

tke care 

if the snow hangs around will be a fun trip to the hospital tomorrow! 

Hi Elona

Firstly good luck for today.  I really do hope that your neck behaves and that you're not too impeded by the snow.  I will be thinking of you.

We haven't had any snow here, which is unusual as we are prone to it.  One of the hospitals I have to attend is over a mountain that gets closed if its too snowy or icey.   Fortunately the cancer hospital,  although an hour away, is on a main route and the local council are very good at keeping the roads clear.

I had to smile when you mentioned the rats.  We had a hen house when I was growing up and it was one of mine and my brothers chores to rat catch.  And Sir Reggie, what a great name for a pigeon :happy:

So glad to learn that your throat is improving and that you're managing to eat more, you did have me worried for a bit. It may not feel like it but, reading back over the thread, it seems like its improving daily.  Ah mince, I love mince... Mince and tatties, spag bol, Chile and chips.  Sadly I cannot eat it at mo, trying to avoid any foods that can get stuck in my 6 gummy holes.  Which also includes rice, and I love rice.  Still all is not lost,  great excuse to eat trifle and ice cream. 

Tell your husband that I feel for him and not to get too comfortable as your voice and ability to talk will be back before he knows it :wink:

How is my mouth you ask...  How long have you got haha!  Well we were back at the hospital late Friday night for around 3 and a half hours.  Remember the phantom tooth ache, well that got progressively worse to the point, even with meds, I just wanted a big hole to open up and swallow me.  Long story short turned out the infection had got into the bone,.  They removed the stitch and packing, gave it a good clean and left it open to drain and heal.  Sent off with another weeks worth of antibiotics and strong anti inflammatory meds.  They're going to call today to check in on me.

I had only had around 9 hours sleep between Wednesday and Saturday slept for 12 hours on Saturday into Sunday Yay!  Short lived as was up at 5 this morning listening to a tin can blowing up and down the street.. . Boo!

So this week I am expecting calls from Dentist and  Macmillan, l have my first covid jab on Tuesday,  bloods on Wednesday and mask fitting on Thursday...  The rock and roll lifestyle we lead!

The reason there is a can rolling up and down the street is because its rubbish day.  I  noticed when we put the bags out that there didn't seem to be much, I mentioned this to the wife and she replied that its because I haven't been eating much... Well I didn't quite know how to take that :laugh:

Ooo before I go I would like to pick your brains if I may.   My eldest dog Spoonie has hobbit feet and we have all hard floors which she tends to slip on every now and then.  This wasn't an issue when she could go on long runs,  but recent walks around the streets has meant her furry feet are well furrier.  Is it ok to trim them?  Any advice would be much appreciated. 

Again good luck for today, let me know how you get on.

Just click your heels three times.

Al

hi 

started then had to stop as came over feeling faint. it has been an ordeal today but thankfully all done even though it will take my body a while longer to get over this trauma lol. 

snow made the journey trecherous but thankfully friend came nice and early and took it really slowly. 

had to go and have re4peat bloods thankfully again nice and early and all fine for clotting etc. 

appointment came and went and about 1 hour late i eventually got taken in. another ultrasound and three biopsies were going to be taken one near carotid artery. apparently there is some deep inset infection or what appears to be present that has not clesred even though i had antibiotics like you. 

got covered in drapes then the ultrqsound took a while to locate various areas for the local anaesthetic. Injections are a little painful but could be worse but it took a long time to get the biopsies from the sounds of things it was not easy. Like you i would not stop or be put of. there was quite a lot of manoevring and stretching neck etc before i could feel the biopsy needle and hear the spring. have had some blood in mouth straight after op although did not say anything, then some more now after trying soup and a little bread - probably not a good idea. - gutted my ice cream did not turn up in order!! 

came home to more stress of house work the builders could not do what was planned due to one of the stud walls being a bearer for water tabnk - didnt fancy hundreds of gallons of water on my head as well lol. re plan to smaller room and still a bit more kitchen not too bad we hope! i could have done without that. just wanted to go to bed but thats not happening. mild headache coming on probably due to blood pressure stress lol. 

need to learn to relax.

eek so sorry about your infection sounds like that tooth was in desperate needs of removal. hope the antibiotics and pain relief kick in soon. 

sounds like you have a bit of travelling to do for all your appointments hope you get time to relax inbetween. Rest is going to be really important for your healing. good to hear how you are getting on. 

yes i always clip furry feet stops things getting caught between toes etc. my boy gets his done regualry on top of toes and inbetween and underneath where able. 

apologise the spelling too tired to go back and check lol 

dont worry did click my heels together several times unfortunately i did not wake up or get home any quicker lol 

take care 

well neck came up like a golf ball yesterday thankfully has gone down this morning to three smaller lumps. very tired this morning did not sleep well. 

All I can say is Brrrrrrrrrr..!

Minus 5 here at mo, tho somewhere in Scotland hit -16 last night and London is due to hit -8 this week.  I  think we're due a -9 wind chill this evening.    Thank goodness for a high tog duvet. 

Just watched the funniest news report about a viral video of an American judge, I think, who had a cat filter on, which he couldn't turn off during an important Zoom meeting.

Glad to learn your neck is recovering.   I can only see your last post so I can't refer back to the last but one so my apologies if I ask something you have already answered...   Most importantly,  how are you today?    Any idea when you'll get your biopsy results? The noise is loud when they take the slices isn't it, you have to do your best not to jump... especially when you know they're near your cartoid.  I joked that at least I'm in the right place lol.

If I had replied to you yesterday I would have cried that I just want my head taken away.   On top of everything else I'm now suffering with light sensitivity which in turn is giving me migraine Grrrrr.   Of course it could be the migraine affecting my eyes.  Anyway they sorted my meds out yesterday,  started on the good stuff.  I was weary of taking it, but oh my goodness it made a huge difference to my day.  Even managed 7 hours sleep last night.  And when I woke I woke with manageable pain... First time in what feels like forever. 

Off to the cancer hospital for bloods today,  then back there tomorrow for CT Set Up and mask fitting.   Apparently you can keep your mask at the end of treatment, the artist in me is filled with ideas of what to do with it lol.

Any way, really hope you're feeling even slightly better today. 

May every step be in the right direction. 

Al

Hi Al

so glad you are now on the good stuff and managed to get a decent amount of sleep thats good. sounds like you really needed it after yesterday. i hope they start sorting out the radiotherapy soon not good that the pain has got worse this quickly. fingers crossed. love the idea of your own mask at the end of the treatment will have to stay in touch to find out what you do with it. 

any ideas whats causing your light sensitivity?

hows the mouth?

boy felt ill yesterday and still feel lousy today have not wanted to do anything. Neck is still swollen and uncomfortable but still on my high painkillers so tolerable. swallowing not brilliant and affects breathing. dont feel the tonsilectomy has had any effect.

presuming results will be another two weeks. 

got up at 3.30am for meds and was disappointed because they showed the same programme hat had already been repeated once a couple of days ago about a female detective. 

i saw that zoom too it was hilarioous especially when he had to say "i am not a cat!" i would not have any idea how to do that. reminds me of the wicks advert and the kitchen where she puts the fairy tle unicorn picture behind her. the ending of that advert keeps getting missed of which is a shame since the other ladies all put up backgrounds when she shows of her new kitchen lol. 

your right it has been cold the snow has turned to ice here and the animals water bowls are all frozen over. the hedgehogs who were not hibernating have decided enough is enough we will try and sleep through this - what a good idea! the only reason tortoise is awake is because of my heating in my bedroom. the cats have hardly moved of the bed! 

newest fad is watching casualty 24/7 real life - no idea why perhaps makes me feel better lol last night had to cringe poor man fell over a plant pot took the lawn mower with him that then fell on his foot taking ovr his big toe and two other toe tips was totally yuck! there were alwo a lot of drunkards who made me feel a bit annoyed when you consider the time they were taking away from needy people. 

also been watching the supermarket show talking about foods etc she mentioned that a lot of foods had increased in size over the yers. had to smile since i had thought the opposite - remember the wagon wheel, the curly wurly and snickers surley they were bigger when we were younger? 

good luck with the bloods and ct. 

take care x

hope your being careful with this ice wow its lethal outside!!! 

throat being controlled better now with painkillers albeit still swollen and neck feels nobbly lol. 

hope things are going ok with appointments. 

i hope youve got a good ice cream for valentines day! i am trying for the tesco cookie dough again - fingers crossed!! 

take care Al

Hello you and your nobbly neck lol 

Cookie Dough one of my favourites...  although to be fair had you mentioned any flavour I would have said 'one of my favourites ' lol, except rum and raisin,  don't even know if you can still get that flavour.    I myself have gone for a traditional raspberry ripple this time,  which hopefully we will be picking up today.   I say hopefully as we've booked a click and collect for between 12 and 1pm today, but its supposed to start snowing in a bit. (Its now 7am ish)

We live 600ft up a mountain valley which has its own micro climate,  the mountains either trap weather in or hold it out.  Fortunately they are good at keeping the main roads clear here and we do have an old Jeep which enjoys the challenge of adverse weather lol.

So good to learn that your neck is improving  You do have days where you wonder if it'll ever end, but then you dig deep for a resolve you never knew you had and fight through each minute,  each hour and each day.  Often you see on TV survivors with a grit and determination that no one else has, I am beginning to understand that now.  I for one will definitely be a different person after all this, how could you not be.

Last few days I have felt really fatigued and poorly.   I said to my wife how could someone feel this ill and not have a temperature lol.  I think I have all the adverse effects from the covid vacs (I had the Oxford one) probably in some part due to my body already feeling rubbish and fighting the big one.  In my 51 years on this planet, other than my neurological disorder, never had so much as a cold, I think I'm paying for that luxury now lol.

Mask fitting went well,  in fact I quite enjoyed it!  It was like having a warm face massage.   Also had a meeting with my oncologist who suggested I now take 2 types of morph, an instant hit one and a slow release one.  They weighed me, I've never been weighed so much, and told me that this is now the weight I have to try and stick to.  One of the reasons for this is if I lose too much weight the mask won't be any good as it has to fit snug.  I have invested in a set of scales, which hopefully will arrive today.... snow permitting. 

Only a blood test to have in the coming week and then Radiochemotherapy starts on the 22nd.  As long as my rogue non tooth heals properly.   They may have to delay treatment by a week if it doesn't sort itself out.

Any type of scissors you can recommend for trimming hobbit feet? (Anyone else reading this, its my dogs not mine :laugh:)

Wagon Wheels....  I watched a programme about them and the ceo had a glass trophy kind of thing with an original Wagon Wheel encased inside.   He offered up a new Wagon Wheel to it and they were both the same size!  Don't think that's true for most of the others.  Remember when Snickers were Marathons?

When life gives you lemons,...  Send them back and exchange them for oranges 

Al

Morning Elona

Hope you are feeling better today

My scales arrived yay!  Not a fan of  bathroom scales, especially having 3 daughters.  I'm also dubious of their accuracy,  but fortunately these ones showed the same weight as the medical ones at the hospital so that's good.   Plus the girls are all grown up now so there shouldn't be any end of the world sagas because someone ate some kale and put in an ounce.

Talking of bathrooms how's yours coming along?  Or is that a sore subject?

I looked into starting a blog yesterday,  not something I've done before.  I want to record mine and others journeys for people in a similar situation to find and hopefully bring some reassurance,  advice and answers.  I for one struggled to find any meaningful help and info, I think myself lucky to have found you.  No one can really understand unless they have been  or going, through it themselves. I also want to add stories of people who faced the tests and agonising wait for results that fortunately came back negative.  So many go through that stage. 

I have also noticed a heartbreaking theme of 20 somethings whith health anxiety who believe they have neck cancer, I found more of those than people with true symptoms.  I want to include links and help for those soles also.

What started out as an idea for a simple blog has already boomed into a complex online help centre and I've only got as far as designing the front page lol!

Still if it helps just one person it'll be worth it.

Happy valentines day, I hope you and your husband can enjoy it.

Remember if at first you don't succeed... pay a professional. 

Al

Morning Elona

Hope you are feeling better today

My scales arrived yay!  Not a fan of  bathroom scales, especially having 3 daughters.  I'm also dubious of their accuracy,  but fortunately these ones showed the same weight as the medical ones at the hospital so that's good.   Plus the girls are all grown up now so there shouldn't be any end of the world sagas because someone ate some kale and put in an ounce.

Talking of bathrooms how's yours coming along?  Or is that a sore subject?

I looked into starting a blog yesterday,  not something I've done before.  I want to record mine and others journeys for people in a similar situation to find and hopefully bring some reassurance,  advice and answers.  I for one struggled to find any meaningful help and info, I think myself lucky to have found you.  No one can really understand unless they have been  or going, through it themselves. I also want to add stories of people who faced the tests and agonising wait for results that fortunately came back negative.  So many go through that stage. 

I have also noticed a heartbreaking theme of 20 somethings whith health anxiety who believe they have neck cancer, I found more of those than people with true symptoms.  I want to include links and help for those soles also.

What started out as an idea for a simple blog has already boomed into a complex online help centre and I've only got as far as designing the front page lol!

Still if it helps just one person it'll be worth it.

Happy valentines day, I hope you and your husband can enjoy it.

Remember if at first you don't succeed... pay a professional. 

Al

Hi Al

what a great idea doing a blog. I had thought of recording my experience but had no idea where to start! am pretty useless as said before on computers. My brother did my behaviourist page. needs changing and have not got a clue. Quite happy to contribute if  wanted. Glad we have met it has been great talking to someone else about our experiences and comparisons and differences. I am also glad we are still keeping in touch here, thanks. 

not a fan of raspberry ripple must admit but have found a new one from tesco called piggy ice cream have ordered it for next week lol sounds intriguing with marshmellows and chocolate in piggy shapes lol. 

i have not weighed myself for a long time but i know i have lost some weight - for me thats good need it lol. glad you have your scales they do say with the radiotherapy you have to make sure you maintain your weight. - good exscuse for all those wonderful fattening things lol if you can manage them. 

bathroom - was actually kitchen and that has been a pallava! the two stud walls i wanted replacing and moving turned out to be weight bearing - one the water tanks hahaha found out when the wall was taken down and the ceiling bowed and water started to drip down. the other was the corner of the ceiling. the old people had basically covered the ceiling with another ceiling underneath that had looked nice and new so we had to get this propped up and wall replaced. plans never work out well do they lol at least compomise was made and i was able to get an L shaped kitchen so a bit more open out making it easier to move about and for hubbys wheelchair. now i have a mammoth task in cleaning and decorating but at least hubby says i have his permission to move a tin at a time!! 

glad the mask fitting went well and you quite enjoyed it. hope that tooth gets better soon. 

now i cannot believe the wagon wheels being same size - must be because i was a kid hmm never did get the grips with name changes like the marathon to snickers as mentioned and opal fruits came starburst, dime bar came daim, jiff came cif. you cant say starburst made to make your mouth water can you! doesnt sound right. 

Where you live sounds lovely, bet you have some amazing scenery around you. Must be interesting finding things for the garden - unless you are not that interested? it is very flat here in essex but at least i have some countryside near me being in a village. we have a field at the back of the garden and in the summer you can sometimes see the family of foxes going past to see what they can forage. its also ideal to release some of my hedgehogs. 

Sorry you have not been well. there are several incidents of people who have had the covid injection being ill for a few days with the symptoms. I am unfortunately down in group 9 despite being a carer, key worker etc so probably wont get mine until May. I am glad in one way as i am still suffereing from this with either some anxiety/blood pressure. I think because neck and throat is still swollen I am getting a bit congested but as you said there has been some improvement. 

Personally to trim fur I use clippers because you are less likely to cut the skin so if you use scissors try and get a small pair of curved ones and rounded blunt ended so theyy cannot get caught. Work from the toes up the feet a bit and then inbetween toes. If able try and cut inbetween the pads underneath the feet. I trained Pedro to give me his paw to clip by lots of little treats. 

Well typically i fancy some icecream so of cours the delivery has not arrived yet - whats the betting it is out of stock!! 

happy valentines to you both too. 

hope your feeling better 

Ahhhhhhrrrrggggg!

I had just composed a reply to you, sat in bed using my phone.  I pressed the wrong button and came out of chat.  Came back and my whole reply had disappeared.  :cry:

Going to get up, make a coffee  get the laptop fired up and try again.

Al

Hello Again

Laptop fired up,  I'm not saying its old but the valves took a while to warm up!

Now where was I?  Ah yes...

Well my ice cream was sadly missing from the order, still I do have a box of Mini Milks in the freezer so they will have to surfice for now.  Your Piggy ice cream sounds interesting, you'll have to let me know what its like.

I remember when we had our kitchen done, there was dust in places for days I never knew could get dust  We were so glad when they were finished and we could have the house back to ourselves.  The decorating after was fun though.

Yes this is a very scenic and beautiful place to live, we have a mountain views from the house, we are very lucky.  Waterfall country, they were all frozen at the weekend like something from a fantasy story.  We only moved here in 2019, the property being a doer upper.  The front and back gardens were all concrete slabs which we spent the first lock down sorting out.  Hopefully when all is back to a relative normal we can find the weird and wonderful to add, we did manage to collect a few mountain stones which are dotted about.  We moved from the south coast of Hampshire, only looked at this house as one of tthe ones we had travelled to see was sold en route!  this one didn't match our wish list at all, but we both fell in love with it when we walked through the door.  Still much to do to it.

I have an array of clippers from over the years.  Don't know why I never thought of it before.  Fortunately she is trained to lie on her back for me to check all her toes so hopefully she should be ok with the clippers...  Though she does have tickelish feet lol.

The effects of the covid jab have all but worn off, just left with a bit of an itchy arm.  The meds seem to be working as yesterday I had a day of little pain and the pain I did have was managable.  I was praying for some let up before I start radiochomo.  All i wanted was a few peacful days and I think I'm going to get them Yay!   All I need now is for yesterdays covid test to come back negative and I can get on with treatment.  I would love for my gums to heal up though so I can at least have some proper food before my throat decides otherwise.  Still on relativly soft easy to chew food such as roast veg and swedish meatballs.

I would love you to contribute to the blog, I was rather hoping that you would.  It's hard work at the mo, getting my head around it all.  Wish I had started it earlier so I could record things as they happened.  Aiming for it to go live before my radiochemo starts.  I've created the home page, an about page and a useful links page.  I think all i need to do now is log the journey to date then we're good to go.  Of course it will need tweeking along the way.   As soon as I publish it I will send you the link.

Hope your Piggy ice cream arrived

Al

wow sounds like your house is definately a stunner and one i would probably fall for too. I loved the idea of doing the house up but boy it is hard work isnt it. still as hubby says little and often and not to push too much. it will get done when it gets done. 

really pleased you are feeling bit better pain wise thats great enjoy these few days. 

glad your also eating ok ish lol not sure i could manage swedish meatballs they sound good what makes them 'swedish' compared to ordinary? 

my soft food now includes cauliflower cheese actually had the energy to mke today, mr kiplings balewell tart (melts in the mouth). tried singapore noodles yesterday but due to their length and thinnest they got caught at back of mouth. Hubby had the great delight in finishing off - his favourite is any kind of chinese!

had some skips as per your recommendations yesterday forgot how nice they are !

piggy ice cream is arriving next week but cookie dough arrived so happy bunny! 

one thing i forgot to ask you was after your tonsilectomy is yout taste normal because mine is not as good as it was - it has not gone or altered as in covid but i definately cannot tast some things as well. 

if your dog is that good i dont suppose you will have any problems getting the clippers on her toes, bless her. 

glad you are happy for my contribution will be honoured. 

have a good day have a yelping dog who is demanding attention so had better comply! 

hi so releived the ice has now gone - shame about the snow always looks lovely reminds me of Ashdown forest down south where i grew up. 

things much the same today - hope your still pain controlled. 

Good Morning Elona (Though it could be good afternoon, good evening or good night depnding o when you're reading this)

Put the kettle on this is a long one lol.

The house is lovely, we're very lucky.  Its a small terraced miners cottage, 12" thick stone walls, with views both front and back of the montains. We were actually looking for 3 and 4 bed homes at the time. This is a 2 bed that needed everything doing to it, but there was just something about it.  I don't think it had had anything done to it since the 60's.  Although lock down afforded us the luxury of time to get a lot done, it didn't help us with energy and finance.  

We like to reuse as much as possible so for instance the bricks from a masive oversized fireplace were used to build retaining walls and a potting table in the garden.  The main bedroom had old freestanding furniture which, for the price of a few extra bits of timber, a pot of paint and  some new door handles off of eBay, we managed to turn into smart modern fitted wardrobes.  I think the total cost for that project was around £60 and a lot of swearing lol.

Swedish meatballs are much tastier and, probably more importantly right now, much softer than mince meatballs.  We generally have them with roast veg and cook them in the oven with the veg.  Most supermarkets do them.  Our favourite are from Lidl as they are fridge ones, whereas most of the others are frozen.  They're also very nice with home made chips and Southern Style gravy....  Mmmm feeling hungry now.

I can't eat noodles or pasta either, crazy as you would think that they would be one of the easy foods to eat.

It was my wifes 50th yesterday, pre lock down and the big C we had had so many plans for it.  But good ole British 'make the best out of a bad situation' it actully turned out quite a good day, certainly one she wont forget.   Something mad I did learn though was that I can no longer blow up balloons!  I may have mentioned that one of the unexpected issues my cancer has caused is the flap in the roof of the mouth that closes to stop liquid, food etc going up the back of the nose has stopped working (hopefully after treatment it will work again).  Because it doesnt close, when I tried to blow a balloon up the air just escaped via the back of my nose making a crazy whistling sound on the way.  Which my eldest found hilarious.  I am so glad that we can all still laugh in the face of this.  I would hate it any other way.

With regard to tatse (and smell) mine was quite the opposite...  They improved.   I don't know though if this was due to the tonsilectomy or the removal of teeth.  Unbeknown to me, or my regular dentist, one of my teeth was quite poorly, so the removal of that could have had something to do with it.  Bare in mind any sugery and/or mouth/throat/nose infections can change your taste buds.  And it can take weeks for it to sort itself out.  Taste is also linked to smell and mood, hopefully yours will be back to full working order soon.  I have been warned that after radiotherapy my taste might change forever.

I have the throat exercises for you.  You may not need them now and hopefully you wont need them in the future, but better to have and not need that need and not have...

SPEECH and LANGUAGE THERAPY TREATMENT PROGRAMME

GENERAL IMPORTANT ADVICE

THE BEST EXERCISE FOR SWALLOWING IS SWALLOWING.

MAKE EACH SWALLOW COUNT

WHEN SWALLOWING FOOD FLUID OR SALIVA ACTIVELY PUSH YOUR

TONGUE AND YOUR THROAT MUSCLES TO WORK REALLY HARD

(IMAGINE YOU ARE SWALLOWING A GOLF BALL)

KEEP YOUR MOUTH AS CLEAN AS POSSIBLE

These exercises are designed to increase the strength and range of

movement of your jaw, back of your throat/tongue and voice box .

The aim is to keep your swallow working during your treatment. Your

Speech Therapist will advise which of the following are best for you.

Please prac!ce them at least twice daily before your treatment starts

and increase to at least 3 times daily during the treatment.

EXERCISES.

1. Jaw

Open your jaw as wide as possible. Hold for 30secs and then close.

Move the jaw as far to the right as possible (without it hurtng).

Hold this for 30secs and relax.

Repeat but moving the jaw to the left.

Make circular movements with your jaw (stretching but not

hurtng).

Repeat 5 Times, res!ng between circles.

2.  Tongue

Stick your tongue out as far as possible and hold for a count of 5.

Pull your tounge back in as far as you can and hold for a count of 5.

Repeat 10 times.

3. Tongue

Stick you tongue out and move from side to side, touching each corner of your lips.

Repeat 10 times.

4.  Mendlesohn Manoeuver

When you swallow, use your throat muscles to hold your swallow high at its peak to keep your voice box up.  Keep this postition as long as you can before finishing the swallow.

Repeat 5 times.

5.  Masako Exercise

Stick your tongue out and hold it between your teeth or your fingers and swallow hard.

Repeat this 5 times.

I would advise not to do this in public lol.  They are surprisingly harder than you think, especially the last two.

The blog,  its working title is Neck Cancer - My Journey.  It's web address once published would be neckcancer-myjourney.com  I can't decide if this is a good address and title.  Although I am the author of the blog I want it to include over time others journeys.  I did think Tonsil Cancer - Our Journey, but I didn't know it was tonsil cancer at the beginning and I don't want it to be just about my tonsil cancer.  So then I though Neck Cancer - Our Journey, but then i thought 'Our' is too broad. HELP!!!!

At the moment I have set it up so the home page is my blog.  Then there are other pages which will be Other Peoples Journeys', 'Useful Links', a 'Forum' so visitors can chat amoungst themselves.  Future ideas are a self help page, recipe ideas page and a page for people with health anxiety.  The reason for the last one is that I have notice on Cancer Chat that it does tend to get bogged down with people, generally 20 somethings, with health anxiety which is an illness in itself.  I want them to have somewhere to go with useful links to help them.  But more than anything I want the blog to give people hope, because hope is everything.

All I can say about my new meds is WOW!  No wonder they come under controlled drugs.  My body did take a hit when I swapped from my old meds (which I had been taking for three years), but I think its calmed down now.

Onwards and upwards

Al'

Hi Al

well that was cetainly a long reply lol but your a good writer and it was interesting. love chatty notes. 

your house sounds imense. The garden is what interested me in this bungalow. it did have the 'thing' about it though and i offered on the spot much to the amusement of everyone involved. the hubby was not quite so impressed but he does not like challenges like me and certainly would not do any D I Y. It took him ages to get the fitness to move around alright and become independednt - he had relied on carers before because we had had a terrace and he could not move around due to steps everywhere. Now he had to cope for himself. I knew he could do it but he did swear at me once or twice! now i think he is grateful. The back garden had been separated into two by an old gate and all you could see were head high nettles and brambles it took me 6 months to clear it but i saw a secret garden there - now it is a vegetable patch and home to my hens. 

happy birthday to your wife I am glad she had a day to remember. It is so important for people like her to have those special moments. I remember when hubby lost his leg i ended up nearly loosing it because everything revolved around him - the changing of the house, the appointments etc it was hard for that short itme. 50 is a great age the start of a new chapter in life. Hubby turned 60 end of last year being lockdown we could not do anything so when we can we will have some friends over. 

thanks for those exercises - tried lol hilarious the last one - my brain was trying to work out how to swallow lol took a while before i could manage it hehehe. 

i cant move jaw to the right as much as to the left so that is a good exercise and i cannot hold the swallow so useful cheers .

next time we go out we will look for those swedish meatballs and give them a go. 

I think the title is great but you mention that hope is everything so  - neck cancer - my future prospects ? journey is great but doesnt give the impression you want. 

future hopes when you have neck cancer

neck cancer prospects

journey through neck cancer

never give up hope - neck cancer

few ideas if you are unsure. 

Love the idea of the pages and yes you are spot on with the youngsters and their anxieties. They do seem to worry a lot. I sometimes think they almost want it to be cancer? that sounds strange but its how it can come across. i think it is because some people dont say great could be an infection when you comment that 9 out of 10 are not cancer they seem to ignore that point - perhaps i am an old cynic! 

the pages on recipes sounds brilliant i think a page of food substances really important to get out there because without the normal ice cream the rest was trial and error so this would be really useful. Your swedish meatballs could top the list ! 

After my tonsilectomyt I did have a few episodes of a breeze going down my throat that was strange but i am back to being congested again. Interesting about your taste not surprised if you had a bad tooth. Has your gums healed up yet? 

glad you are on the wow meds. I have cocodamols - codeine/paracetamol or tramadol, tramadol works nicely but affects me a bit and does not last long enough so on top dose of codeine. yours must be morphine based? they would be good! another important thing for you to be pain free. 

nice day today little rain so spent some time outside sorting out the hen house and trying to catch Sir Reginald Perrin the ex racing pigeon! so named due to his change in life after flying back from France and breaking his wing. Several slips later in the mud and feeling totally exhausted i managed to stop his runa round and catch the little so and so with the hens and get them into their new home. iam hoping this means i get a good nights sleep. hubby is still betting I will be up at 4 bets on ... 

carry on laughing 

Elona 

Hi

lovely cauliflower cheese today hime made yummy, am beginning to miss my spices though. Tried some sweet chilli sauce the other day and it did not agree was gutted. 

hubby has his covid jab booked next week, when i saw a held telephone number i hoped it would be the consultant. i then got a bit peeeved that the only way hubby could get covid is if i broiught it home so as his care, key worker, health issues why was i not offered one hmm something not quite right. I then thought well maybe a good idea at moment with getting tired and congested couldnt cope with mild dose. 

managed to put up a bit of wallpaper today - my one job a day - the good thing is it can take me all day and that does not matter at moment so was quite chuffed. (only a small wall) and nice and easy paste the wall instead of paper. a tropical forest design with ovelots, parrots and toucans quite groovy on one wall. the other walls will be a calico colour. 

i lost my bet !! was up at 4am on the dot! 

take care 

Hi Al

First of all I hope things go well tomorrow will be thinking of you. Hope you are ok and not worried. 

I think you are quite amazing managing this and your wife also. 

Sun is shinning here first time in ages makes everything much better. Managed to sleep through the 4am last night was so tired but pleased. 

take care.

Hi Elona

Thank you very much for your thoughts for tomorrow, it means a lot :happy:

Whilst waiting for this page to load, took me three attempts to find cancer chat today.  Loading page was all about donations, so I clicked on the home page and no sign of the cancer chat link.  I then clicked on the Cancer UK logo, and hey presto!  Here I am.

Anyway where was I?  Ah yes, whilst waiting for chat to load I was thinking how to start my reply to you...  I know I will be a gentleman and ask how the devil you are, but alas you have already answered this today.  Now you have thrown me and I have to think of something else :laugh:

I am so glad that you managed to get a better nights sleep, sleep is so important.  It's not simply for how long, but more importantly the quality of the sleep.  It does make it so much harder when not only suffering pain and discomfort, but at this time it is difficult to stop your mind whiring away.

Its wonderful that you are getting some sun over there in the East, the sunshine simply makes life Oh so much brighter, its healthy too.  We're in our rainy season at the moment, really looking forward to the sun making an appearance so we can get out into the garden.  We didn't get much time to enjoy it last year as by the time we had finished it the summer was all but over.  Lisa's already purchased some lights to go out there when the weather turns.   We're very luck too as we live in a protected dark skies area so on clear summer nights we get amazing views of the Milky Way and meteor showers and the like.

Our thread was mentioned by one of the moderators to a newly diagnosed person on chat.  I will go over and invite them as I expect they have looked at out thread but they may feel that they can not join in as we have been going for some time now.

I took your advice on the title for the blog.  I have renamed it Neck Cancer Journeys.   I've been channeling my depleting energy at that.  Its all ready to go live, but I messed up a bit.  It costs £8.50 a month to publish with many benefits such as web address, anylitics etc, a couple of days after opening my account with the provider I was offerd £4.50 a month, but I had to take the offer within 24 hours.  I wasn't 100% sure at the time and I hate feeling pressured so I decided that I would rather the £8.50 a month and be sure...  Hope you're keeping up with this...  Anyway I wanted to pay monthly, which I found turns out to be £11.00 a month which also does not include any of the benefits, on top of that I would still have to pay for a web address.  Ahhhrg!  So now I have to find £102 for the annual subscription (£8.50pm) if I want to go live now.  Although I really wanted to go live pre treatment I have decided to hold out for another £4.50 offer from the provider, which they are sure to do it's just a matter of when.  Nothing is ever easy is it.

Thinking that when I add a few more parts to it, especially the forum I will need a hand running it if you are up for that.  I can add you as an administrator.  Have a think.

I love the sound of your wallpaper.  I keep looking for a feature wall where we could have something like that.  You must be so happy with your bathroom kitchen.  I have no idea why I thought it was your bathroom the other day.  To be fair some days I forget my own name :laugh:

I really think that you should be getting the jab, though as you said it may not be the best time with your body fighting so much at the moment.  Unpaid carers should be somewhere near the top of the list.  It just sounds mad in my head that they're not.

Here's hoping that the sun keeps shinning and that your sleep keeps improving.  Ready to fight the good fight.

Right time to try and eat a roast with my remaining teeth :laugh:

Stay strong

Al