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

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

Hi AL

I would be honoured to be an administrator if you are happy. Do you want contributions to monthly? you can personally email me and i can set up DD. 

Sounds like you have been working hard on it. Fantastic work but dont over do it. 

Enjoy those roast veggies. we had borsch. very good proper russian recipe. Came from a holiday hubby and i loved and a place we would go back too if it was at all possible. 

love the fact you have protected skies so can see everything that goes on above our heads - must be amazing with a glass of wine on a clear night. 

sleep well

Hi AL

I would be honoured to be an administrator if you are happy. Do you want contributions to monthly? you can personally email me and i can set up DD. 

Sounds like you have been working hard on it. Fantastic work but dont over do it. 

Enjoy those roast veggies. we had borsch. very good proper russian recipe. Came from a holiday hubby and i loved and a place we would go back too if it was at all possible. 

love the fact you have protected skies so can see everything that goes on above our heads - must be amazing with a glass of wine on a clear night. 

sleep well

Hi Elona.

12 Hours Earlier...  Well chemo bag is packed, tablet loaded with a couple of films and games (downloaded incase of poor WiFi) and fully charged.  Spare reading glasses, headphones, fruit pastels, meds, tissues and a bit of cash.  My radiochemo suit is washed,  aired and ready to wear...  Whats a radiochemo suit? I hear you ask.  A nice new comfy tracksuit with no metal in it, comfy for the 6hrs of chemo, no metal zips etc so I can keep my dignity through radiotherapy :laugh:

Alarm set for 6am so I can leave at 7:20 and be on the ward by 8:30am.

Present Time...  It's 10am and I am sat in a big comfy chair having the first part of my chemo which involves a kidney flush for an hour.  The flush is administered via a drip which is attached to a cannula in my hand.  I have had a plethora of pills which include anti sickness and ones to make me wee... cos I need that.  I have to ask to go to the loo, not done that since infants, as although the machine is mobile it is plugged into the mains. 

Even though I left home at 7:20am I didn't arrive until 9am!  10 miles of zero to 10mph on the duel carriageway.   Fortunately my nurse and many others here were caught in the same jam. So I don't feel so bad now.  I will update on the progress. 

Thank you for accepting to help administrate the blog,  it will be a big help.   And thank you very much for your offer to help with the costs,  for now I will decline.  I have plans to make it self sufficient over time.   As soon as I work out how to add you I will.   

Right really need a wee...

Well my first visit to the facilities was a mission, got myself into a right jumble with all the tubes and wires :laugh:

I have been promoted though, I can now unplug myself without the need for assistance....

Another vist to the facilities,  the kidney flush is definitely working :laugh:

Flush is finished.  They have swapped the bag for the actual chemo, cisplatin (not sure of the spelling)... This bit lasts for two hours, so headphones in and film on.

Al

... watched around 20 mins of my first film when my nurse came around with a chemo card.  I have to carry it 24/7 in case of emergency. Back to film... 5 mins later nurse is back with home meds.  Back to film... few mins later tea lady arrives,  I opt for coffee and biscuits.   Back to film.... not 5 minutes later sandwich trolley turns up, I go for chicken mayo.  

Just put my headphones in....  Gotta weeeeeee!

Hopefully that's it now and l can finish my film.

How's your day going?

Al

Well so'n'so's law i fell asleep before the end of the film.  And chemo waa soon finished.  Went a lot quicker than I had imagined it would. 

Straight to radiotherapy,  load more gumph for the folder lol  only in there about 20 mins, machine hardly makes a noise and they had some good tunes playing.  Mask is now a bit more snug due to hardening.

On way home now for a much needed cuppa.  Heres hoping the journey back is better than the one here...  Thank you for sending your sunshine over by the way....  its a joy to see that rare ball of flame.

Al

Thanks for the invite guys.

So you've read my post previously I guess.

I had my meeting today at the hospital. I'm not going to lie my emotions are very much all over the place. 

So I'm stage III and HPV+. However I've had the affected Lymph nodes and surrounding tissue already removed leaving what they're saying a T2 sized primary in my tonsil. (The nodes were my primary symptom)

Told ill be starting Chemo/Radio in about 3 weeks. With 1 dose on Day 1 and another in week 3.

I'm working atm to control emotions. Been prescribed some Sertraline which has helped I think and possibly not in others as I think my levels of Seretonin are all over the place!

Been tough on my partner as well. Been blessed with having lots of people around me.

One spark of good news was that my teeth were fine and don't need any work. 

Told a number of factors will hopefully go in my favour with age and HPV Status. 

Strange thing is I'm so wanting to survive this for the sake of my family but with everything coming its so hard to visualise. 

Being in the Ambulance Service for 13 years I developed coping mechanisms after stuff I've dealt with but those mechanisms become totally useless when it's you who's ill.

Ready for a night's sleep I think. 

Sam

hahaha love your notes i am living your day!!! 

glad you got some sun makes all feel better! 

well it was my birthday today - getting older by the minute but despite this insisted i still had to do my one job a day so out came the extendable paint roller and calico dulux to paint the spare room wall. now bearing in mind it is a single bedroom should have been easy but when the handle kept sliding the roller towards my hand or flipped it over to one side so i was painting another section of wall you can imagine the swearing ...... 

anyway since i have all day to do my one jobs it didnt matter and it now looks good - consequently the roller has been thrown out the window! 

tried a chocolate muffin for tea as a kind of birthday cake and nbearly choked on it decided not a good one for the throat. shame was looking forward to a decent amount of chocolate. oh ice cream came will let you know what the piggie tastes like .. 

hope your not too tired after your adventure today 

take csre

Hi Sam

really nice for you to join our talk. We aim to discuss everything so other people can read and know what to expect and hope., 

it is a very worrying time for all and there is so much information to take in and tests to do etc you have hardly time to gather your thoughts. My friend Al will tell you that. 

it is also really interesting comparing strategies for treatment in each case and this will help other people too. 

there are several things but i think the important thing is hope never give up on hope. As you said age is on your side and also being HPV+ (having better success rate). Make sure you get plenty of rest so you dont get too axious. Mind you if you canget over operations like you have then you must be pretty good already. I also get very anxious when i have any tests and my blood pressure rises lol. 

involve your partner as much as possible he will need your support as much as you will need his, even though it is you having the treatment bleieve me it affects partners as much in every aspect. having the love there will help. 

whatever support we can give you we will gladly. 

rest easy 

Hi Guys

Hope your both doing ok. 

Had my covid jab today arm feeling little heavy and am feeling tired but otherwise fine. Glad i have managed to get it. Hubby was having hius so as care etc etc managed to have a spare and gave it to me. 

Al - hope your not too tired after your first chemo and radiotherapy. I hope your feeling ok. 

Sam hope your ok.

Hoping my results have come through and are being discussed as its wednesday and MSD discussion day. - fingers crossed am getting fed up feeling like this now. 

keeping occupied as usual but also getting fed up have decided am c... at skirting boards !!! will take ages to get done. bummer. 

take care 

HAPPY BELATED BIRTHDAY!!! (21 again)  :happy:

Its so sad that you could not eat your cake.   We have decided that once treatment is over, it should coincide quite closely with lock down restrictions easing and the first warmth of the summer sun, we will make up for all lost time, celebrations, food, drink, family and friends then.

Looking forward to the report on your ice cream.  Here's a bit of info from a food  leaflet I received from radiotherapy...  Do not eat ice cram straight from the freezer, allow to warm up at room temperature for 10 mins.   Apparently very cold or very hot isn't great for throat cancer.  Fortunately I prefer my icecream sat in the bowl for a few mins.

Sorry not been on here for a couple of days, I've just been so blah since Monday, very guggerly tummy and bad acid reflux which had me up from 1:30am on Tuesday.  Already fed up with the regime of pills, postions, creams, mouthwashes, traveling etc.  And it's only half way through week one lol.  I will say though both chemo and radio staff have been absolutely amazing, nothing is too much effort for them.

To be honest directly after Mondays treatment I was on a high, I think from the fact that the fight had truely started, my turn to fight back against the Big C.  After a couple of hours of being home the colour just drained out of me and fatigue hit, as did the gurrgly belly.... Oh poo (not literally)!  They sent me home from chemo with two different lots anti sickness pills.  Steroid ones 4 to be taken each morning after breakfast for 3 days after chemo, and then some back up pills in case the sickness really kicked in.  Ironically, after taliking to radio on Wednesday, it turns out that I wasn't on the verge of being sick, I was suffering bad reflux from the steroids.

It's now Thursday, last day of the steroids.  No reflux last night, but really do not feel like eating this morning, yet I have to... Not just to keep my weight in check but to be able to take the meds.  Chemo also gave me a thermometor to check my temp daily.  I do have one but they wanted me to use theirs.  My blood counts will be at their lowest from yesterday, hopefully start rising agian tomorrow.  This is the most important time for extra hygine and acoiding touching anything that may carry infection.  Even having to wash my hands after stroking tne animals, and with four animals that require stroking thats a lot of hand washing during the day lol.

Once a week with the radio I have a review, the first was on Tuesday.  The review is a time for them to give you info, meds, any kind of help.  But you can rquest to see them any day.  On Tuesday I was givien more gumph for my folder a mouth wash that I have to use four times a day and cream for my neck which has to be applied twice a day.  I also have to cean my teeth twice a day with Duraphat which is a prescription high floride toothpaste and I have these small brushes that I have to clean between each tooth for 10 seconds twice a day....  I am going to move into the bathroom I think LOL!

Believe it or not I do feel quite happy today.  The sun is out and although I have no interest in food I and my body is technically at its lowest eb for the week I strangly feel better today than for the previous 3.   Soon be the weekend,  no treatment at weekends means we get weekends back yay!

Anyway that is enough of my rambles.  How are you?

My wife loves painting walls, but hates skirtings. doors, windows etc.  I fortunately am totally the oposite, I love all the gloss painting.  I love the cutting in, must be the artist in me.  It's really good that you are doing it though, doesn't matter how long it takes.  The sense of acheivment after is well worth it, don't you think.

Ahh!  nearly forgot, thank you so much for welcoming 'samsamtheambulanceman' to the thread :happy:  I saw his post after I invited him, but did not have the energy to reply.  I will difinatley try and get aroung to that later.  If you are trading this Sam, sorry I have not replied to you yet.

I am so glad that you received your covid jab, which one did you have?  We did think it strange that unpaid carers were quite low down the list.  I mean whats the point in me having it, when my primary carer can't, if she got ill with covid we would both be..  well words that i cannot use here lol.  Although Wales have said that they are moving them up.  Hows are you feeling post jab?

Wednesday must be the national MDT meeting day, they meet here on Wednesday too.  I had my call the following day (which for you would be today) so fingers toes and eveything crossed for you.  Thinking of you.

Anyway you haven't got time to read this, there are skirting boards that need painting... They're not going to do them their selves.

Stay Posistive

Al