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

Been a very up and down sort of week. 

Hope your Chemo session wasn't too awful.

Got an appointment today seeing my Nurse. Unfortunately these 30mi trips are very much getting longer by the occasion! Today is discussion on Storage of certain bodily fluids!!! Obviously big risks coming with my fertility. We are also trying for a baby in the hope of not needing them and to be honest. Will provide a big boost to push through this.

The HPV Diagnosis was definitely a relief in some respects. I understand the odds of a cure are alot better and my family are convinced we're going to destroy this thing that's left but I've almost trained myself for bad news so struggling to see anything but. Not the right mindset to have but it's a hard habit to break after they said 2x the neck growth was a Cyst and was benign. I don't hold any grudge or blame toward anyone because of that because it was the reason the Cancer was found and diagnosed.

Emotionally its been trying, I'm battling especially low mood during mornings with fear and anxiety of what's to come. Panic has been a fixture in some early mornings before I'm due to wake up admittedly. However, during as the day goes on that does start to go away with the Anti depressants I've been given (again! Something I thought I would never need!!!) I was dieting anyway because my weight has been a long standing issue for a while. In 2 weeks I've shed 2 Stone (I was the wrong side of 150kg!) But partly through eating and drinking better as well as probable stress. Eating hasn't been great in thr mornings either but I'm determined to improve that.

I had to come off my 2 night shifts this week as I was too exhausted after my MDT. Certain scary things had to be said and I think it played on me alot. I got in the drivers seat at 19:30 and fell asleep until we went out on a job just after 20:35. I knew I wasn't going to be able to do by job effectively or safely so asked to come home.

The prospect of treatment has me concerned with the effects as well. They went through all the Chemotherapy side effects as well as radio but said with my age I should bare them better. Hope their confidence is justified. They said they're hitting it with 1 type. If I had the neck nodes still that it would be a different story. Or any other mets! Which again thankfully isn't the case.

Still hoping as well to help myself to radio appointments as they told me it can be done. 

Taking it a day at a time. Making as much as I can of a normal couple of weeks before we start.

Hope is there. Smaller than I'd ever hoped if I got Cancer but its there.

BLOG UPDATE: 

I forgot to add this morning that I was gutted that I missed another 24hr offer for 50% off for the year.  But all is not lost... I  sent them an email explaining the importance of getting the blog live and they have sent a promo code which lasts 7 days, so blog should be live by this weekend yay!

They also had a quick peek at the set up of the pages so far and gave it the thumbs up.... now that's service for you.

Al

Al

Any news yet?  

Just remember we're here for you

Al

Hi Al

well no news is good news isnt it and I have not had any phone call so hoping that is the case. Beginning to think i am going to be like this for ever lol. 

Piggy paradise ice cream is lovely but not as good as the cookie dough. It has tiny chocolate pig faces in a vanilla and mashmellow ice cream with some toffee every now and then also. worth a try! 

Hubby got me a pyrex chicken dish he had been looking a pottery chicken pots but resulted with this and it is brilliant I put carrots, potatoes underneath and the chicken and veg came out really succulent i felt happy having an almost roast for the first time in ages. 

so pleased your blog is positive and going live - what a phrase isnt it hubbby said that started coming in just before he left his job. cant wait to see it! 

glad your feeling ok have been thinking of you and wondering thank you for your long message detailing everything and reply to Sam. so important to get it all written down or people just get a basic idea of things. You often hear things but never exactly what happens and thats why your blog is so important. I am not surprised you were tired the last few days they often say it takes it all out of you. heres looking up to the future. 

I also love art and often do paintings with acrylics but mitre carpentry is a definate no go area have finished the room just needs painting but will avoid the skirting if i can - unfortunately there is still some to do in the living room oh well will leave it for last lol. 

tomorrow have decided to have a day of and just do a little wall painting, more gentle and easy. Fingers crossed get phone call tomorrow. That is I am presuming the results came back and the meeeting did go ahead? they never tell you its a guessing game. 

Hubby is suffering from the covid jab today has a sore arm and headache, thankfully I am fine body obviously thinks it is trivial. 

had a lovely surprise today a bird table hand made hubby bought for me is placed outside my bedroom window so if i get too tired hopefully can attract some birds and watch them. 

waiting for the ring...

Hi Sam

Dont worry about being depressed, anxious, having panic attacks it is totally understandable. I suffer panic attacks and am on tablets. When I have to go and have tests like the biopsies etc i can feel myself raising my blood pressure higher and higher! then i freeze and stay really still so the hospital staff think i am being really good lol if i could i would probably have run a mile! 

Try to be positive like Al he is absolutely amazing and you can learn a lot from his attitiude and notes. He is a good friend here and I am lucky to have found him. 

Yes take a day at a time and small things if your tired put things of nothing is that important that cannot be done the next day. I set myself a small job a day to keep me going but allow myself the whole day to do it so there is no pressure. If you cannot do your ambulance job dont worry a break away maybe good for you whilke you get into a protocol for your procedure. Then maybe a phased return ? I am sure your friends will be there for you. 

Keep talking it helps 

Hi Elona 

Hopefully not too much of a wait for your results, to me that was still the worst time so far.  I know how you're feeling.

I really fancy some cookie dough ice cream right now, thank you for that lol.

Just had last radiotherapy for the week, now sat in another part of hospital waiting to have my bloods.

Home now, cookie dough purchased on return journey :happy:

Al

Hi Sam

Up and downs come with the territory,  mines been a week of up ,down, down  down, up, hyper, blah.  It's the downs and the hypers I personally believe need controlling.   Its not easy by any means, but it can be done.  It's a skill that can be learned, but like any skills some take a while to achieve, some are learnt very quickly and some you just have to keep practicing. 

I am in a way lucky, not that I appreciated this before.   I was a professional artist and tutor with a teaching studio , gallery and online business living my dreams and life long ambitions until 2017 when I lost it all pretty much over night to a rare neurological brain disorder.  Within a few months of diagnosis l lost my businesses, my students, my ability to create art both physically and mentally,  my feeling of being a man, but by far my biggest loss was me.  The condition is much like MS and Parkinsons, all the docs could do was help manage the chronic pain, fatigue and depression with pills potions and clinics.  

I gave into the neurological diagnosis at the beginning, I let it define me.  I wasn't me anymore, I was it.

Eventually I made the decision to find me again, it would be a different me,  but a me all the same and maybe, hopefully a better me.  It was going to take a bunch of whole new skills, some came quickly,  some took longer and some I'm still tripping over and learning again and again.  I'm still learning and adjusting 4 years on.  I could write you a whole book on it haha!

We are all so very different and my coping methods that work for me, won't necessarily work for the next person.  But I can plant the seeds for you.  One of the most important skills for better physical and mental health is without a doubt rest and sleep.  And its the quality not quantity of that rest and sleep that counts.  It was that that I had to take back some control of first.  But rest isn't just when you're eyes are closed led onbthe bed, rest is also controling your energy output when you're awake.  Elona struck the nail on the head when she said to give your self a task and if it takes all day then so be it, and if it doesn't get finished there is always tomorrow.   Worry, unnecessary worry mostly prevents quality rest and sleep,  naturally if you can start to compartmentalise your worries and throw away the ones that don't really matter right now, then better rest and sleep will follow, thoughts will become clearer and the day to day will become, not easy, but easier.  Energy levels will improve and you will be in a better position to face the rest.  Every journey starts with a single step.  I think you did the right thing going home from work, I understand that work was a kind of coping mechanism, but the fatigue that you felt would have far outweighed its benefits.   

I know I've been banging on a bit with this reply to you, saying how important rest is, probably saying things you've heard a million times before and I've got you wishing i would stop writing right now because your eyelids are drooping, but I will finish it with this...  

My past self was all about helping others to achieve their goals so much so it became detrimental to myself.  I realised on reflection that my ignoring myself and by taking on not only my worries but also the worries of others It wasn't helping anyone.   Its not selfish to take a step back and look after no 1 sometimes, by looking out for yourself you will be in a better position to be you and the person you want to be for those you care for and who care for you, be it family, friends or strangers. 

Hope this reply to you Sam didn't come across as too much of a happy clappy self help gumph.  It didn't start out that way. 

My wife says to me often, why use a sentence when one word would suffice?  Another skill I've yet to learn.

Here's to the ups

Al

Good Morning Elona.

Just a couple of lines to wish you well for the day.  

And to let you know I ate half the tub of cookie dough ice cream last night, which I  may remind you that its your fault i purchased haha!  so there shouldn't be any problems with me weighing in at my 80kgs on Monday. 

Thinking of you both

Al

hahaha that cookie dough ice cream is a goodie! happy to contribute towards the weight control lol. 

mnaged to go all night without getting up for more pain relief yay! but i need a dentist to file a tooth down think they moved my jaw when they took my tonisl out and it is rubbing - hate dentisit will put of for as long as possible - that is if i have dentist any more lol. mine throws you out if you dont go reguarly and i didn not go last year. oops! 

sun is shinning on the frost we had last night so planning the job of the day might be a bit of skirting painting. quite tired today though so we will see might just move some things around. at the moment i am sitting in bed with a cuppa lol 

i read your reply to Sam you are a very amazing person and ia m in or being an artist of that callaber must have been quite something but to loose it must have really weighed on you then to regain your self is something to be very proud of. most people would only aspire to be as good as you - i certainly would i love painitng animals and am not bad but wow would love to see your work some day, can you adapt your condition to doing a different style painting? or is it still little painful. 

now if i was you savour the cookie dough and order some more! 

Hello Elona 

How are you?  Any news yet?  How's the tooth?  You should be OK  most dentists stopped seeing patients back in March 2020. Mine was one of them.

Sun shone all weekend here,  out in the Garden in February here... Unheard of!  Gave the garden gate two coats, not real energy though, sadly steroid infused lol.

Just finished my second chemo and 6th radio today and not feeling too bad yay.

Sunny here tomorrow  hope its sunny with you too

Be Strong

Al

Hello Elona 

How are you?  Any news yet?  How's the tooth?  You should be OK  most dentists stopped seeing patients back in March 2020. Mine was one of them.

Sun shone all weekend here,  out in the Garden in February here... Unheard of!  Gave the garden gate two coats, not real energy though, sadly steroid infused lol.

Just finished my second chemo and 6th radio today and not feeling too bad yay.

Sunny here tomorrow  hope its sunny with you too

Be Strong

Al

Hi Al

sounds like you are doing really well - keep it up! 

congratulations on the two coats of paint - i only managed one on the skirting boards today. tooth is feeling bit better today think it is a wisdom tooth that need sorting but have bought a file so am going to see if i can file the tip tiomorrow lol anything to avoid dentist lol 

no news yet so figure they cannot have got results back - susoect then they must be trying to culture something. 

am finding that somethings get stuck in throat - hubby knows this feeling well he had a stricture and had to have his throat enlarged monthly for nearly 2 years. hoping this does not sty like this. taste is still not 100~% either. otherwise today is much like another ! the list of jobs are getting longer and longer! my pond decided to break - the hose pipe to the pump and i could not mend so have ordered some parts but may have to find someone to help me. grr 

anyway take care

yes sunny here it is good to see the sun but boy bitterly cold brr couldnt face being outside for long. quick throw food at animals and run inside lol. feels like winter again. 

did manange five minutes yesterday to sut a salvia in the front garden and plant some galanthus and primula in a basket on a fence to brighten the place up a bit. 

hubbby got me the new bird table and i was watching a blackbird and starling on it - so pleased to see it being used especially as we have crows, rooks, jackdaws that could scare of the smaller birds. 

happiness keeps you positive x 

Hello, I am a 20 year old male 

and just been worried a lot about my node u see my jawline bone it's more on the muscle but you can't see it sticking out only if you proper dig for it.

I was just wondering what was your symptoms of tonsil cancer? 
when did you first notice something was up?

and fair play to you for being so strong during this you have my upmost respect!

many thanks 

Jake 

Hi Jake 

Firstly and most importantly try not to worry, easier said than done i know so I will give you a couple of positive points to start.

Neck cancer is rare, even more so in someone so young, you have youth on your side.  9 out of 10 people with initial symptoms come back negative.

Make an appointment at your doctor to get it checked out by a professional, this is important.  

I am just in the process of starting a blog site with my lovely friend Elona.  The site is live whilst we build it.  On the site you will see my journey from the point I first noticed something though to seeing the doctor.   There is a lot more to add to that page yet, but there is enough to answer your questions so far 

Go to www.neckcancerjourneys.com  Then click on the My Journey tab.  

Keep us updated Jake 

Stay positive 

Al

Hi Elona

Sounds like you are busy, busy, busy, which is good.  Vision of  you feeding the animals made me laugh :happy:

its lovely watching wild birds visiting and interacting on a bird table, they don't take long to find a new one.  Soon the whole neighbourhood of  feathery friends will be visiting.   Hubby did a lovely thing there. 

My better half ordered 125 bulbs and 20 pots on Monday, bulbs due delivery April I think.  So looking forward to the spring garden.  Next on her list are some more garden lights.  My next job is to fix up the old front garden bench... I say fix up, more like rebuild.

love your last sign off... 'Happiness keeps you positive'  

It sure does :happy:

Al

Hi Al

misty morning here but thats fine as i can finally get spare room back to some normality - or start. 

dont know about being busy lol just keeping myself out of mischief! and occupied whilst i wait and wait ...

having a lazy hour at the moment before i drag myself up the cats dont mind though they are keeping me company. Thats the thing isnt it relax and rest is a great healer. 

love the ideas for the spring your wife has the right idea - lots of colour. i have got to sort my garden out it needs some colour too. i did order some veggies to grow - celeriac, sweetcorn, butternut squash and some yacon a weird root veggie i took an interest in trying. i was going to grow courgettes again as we both love them but last year we had so many we could not eat them quick enough! 

there is now the fattest pigeon on my bird table lol. he only just fits cheeky monster!

 hope the chemo/radiotherapy is going ok

keep smiling it brings out the happiness

hi Jake

I am glad you found us here and Al who is brilliant. As he said a lot of lumps are not cancer so there is always hope and even if it is you have to have hope always. I have a lymph mass and it was connected to my tonsil so I had a tonsilectomy. In my case I am lucky at the moment they are considering infection being left in my neck but iam awaiting test results. Like everyone you go through a whole mixture of emotions and I think we constantly think the worst - try not too. You wont know untik you get a doctors appointment. Anything like this needs to get checked out. please do. 

take care we are here for any support

Hi Elona 

I know where to come for my veggies this year.  I built a potting and planting table area in the garden last year for my wife to have a go at growing some veggies.   I wanted to use the bricks to build a bbq and pizza oven  but I lost.  To be fair she did buy me a shiny metal combined bbq and oven after.  

I think she tried peppers, onions, tomatoes and some kind of cucumber.  We got a few results, but it was all a bit rushed as we were doing the whole garden.  Time to enjoy it this year and hopefully more success with the veggies. 

Really interested to know more about the Yakon. Love root veg.  I wouldn't mind having a go at parsnips,  I could eat them all day long and we certainly get the frost here.

Chemoradio taken its toll a bit this week.  Had a bit of a wobble lol.  Seems I have a rare reaction to the anti sickness steroids, but they were straight on it so hopefully all sorted now.  Starting to feel the radio inside my throat now too.  Taste buds all over the place.  Only food I can taste at mo is strong flavours,  sadly most strong flavours involve spices which I am supposed to avoid lol.  Saddest one this week was going right off cheese, cheese freaks we are.  Absolutely hated it this week... really hoping that ones not long term.

Onwards and upwards 

Al

Hi Al

Stay strong and positive as per your moto! You can do it - wont be forever. Sorry to hear about your taste buds and throat you will have to try and be a bit more creative - loads of garlic? very good for you, dark soya sauce if you like chinese things, add tomato ketchup to add the tomoato flavour and thinkening. Hope your able to swallow ok still. What about the parmesan powder ? smells disgusting as i remember it but is quite strong. Hubby and i love cheese too and strong cheese not much point if you cant taste it. 

Parsnips - yuck!!!!! my mother loved them she used to roast them but i absolutely hate the taste lol probably one of my worst veggies lol. Suttons have dispensed the veggies so will let you know re the yakons. Last year i grew tromboccini think thats how its spelt very suggestive looking vegetable lol but tastes like a slightly more solid courgette they were yummy. Do love being adventourous. You will have to tell me what your wife decideds to do. 

Got annnoyed with our doctors this morning needed more meds and went to collect - chemist is about 15 mins drive away when i got there they were missing my painrelief. The doctors had not done it because i had asked for an increased amount and they had had the message since monday grr just about got enough to last until tomorrow. I am begginning to think that unless you are "important" you do get pout on the back burner. 

take care 

Hi Al

Well got my telephone call today ! 

the consultant said they had to get a second opinion but it is not cancer. They think I have TB lol how funny is that looks like i will be going through a long journey to get better too so will be pestering you on here as much as I already do lol. I am being referred to the respiratory clinic now for further tests because since the biopsies are infected it is still fairly serious. Got to laugh but sad because i will have to ask the charity to look after jy hedgehogs for a while. 

on the positive side - gives me an excuse to stay on the ice cream for the time being!! 

on the bad side - my brother phoned and thought I was my hubby because I still get the husky voice!! - excuse was he was outside in America - hmmm 

Hope your feeling bit better this evening 

another food - the yummy tea cakes mashmellow topping and soft biscuit base lovely 

take care