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

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

Hi Sam

So glad that you have joined this thread.  My apologies for not replying sooner, I have been on a really low eb since chemoreadiotherapy on Monday.  I was very happy to see that the lovely Elona had replied to you.

My Chemoradio is 6hrs Chemo on a Monday, followed by radiotherapy.  And then adtional radiotherapy Tues, Wed, Thurs and Friday.  No treatment at the weekends.

It is really hard on partners, I think in many ways it is harder for them as that can feel so helpless.  it's very important to get them to talk as they will feel that they can't tell you how they feel, sadly and wrongly thinking that their feelings and thoughts are incomparible to yours.  I only found out myself the other day how scared my wife was about losing me when we knew I had cancer, but didn't know the type or extent.   I will be totally honest with you I was relieved mine is HPV+, there is no such thing as a good cancer, but HPV+ is one of the easiest and most sucesssfull to treat.  Though treatment is nothing short of brutal, you have to keep in mind the alternative is worse.  

On saying that we are in the process of creating a neck cancer blog, which I am hoping over time will show that each persons journey is different, and as many for who the treatment is difficult, many also go through it with much more ease.  I very much hope that you will feel up to adding to the blog once it is up ad running.  

Cry as much as you need to, it's a good release.  Never feel like you have to hold it in to protect others or feel that you are being over emotional.  I was so oposite I so wanted to cry, but just couldn't..  I could not find the release.

Be so glad you ave good teeth...  Having 6 removed pre treatment was hell.  As was the adult tonsillectomy...  It was the good tonsil they removed I might add.

Having the coping mechanisms that you have procured through your 13 years in the service is good.  But I know from experience of growing up in a medical family that the coping for others is different from self.  Plus too much knowledge can be a weight.  So do not feel that your coping is braking down, it's a differnet kind of coping.

Even though our cancers are so similar the treatment has been very different.  Elona too has so far had very different treatment.  Hopefully she will be getting her results today, her MDT met yesterday.

Please do stay in touch and keep us up to date.  Feel free to come on this thread just to rant, or just to chat about anything that's not related to the big C.

Good luck

Stay Strong

Al

Hi Sam

So glad that you have joined this thread.  My apologies for not replying sooner, I have been on a really low eb since chemoreadiotherapy on Monday.  I was very happy to see that the lovely Elona had replied to you.

My Chemoradio is 6hrs Chemo on a Monday, followed by radiotherapy.  And then adtional radiotherapy Tues, Wed, Thurs and Friday.  No treatment at the weekends.

It is really hard on partners, I think in many ways it is harder for them as that can feel so helpless.  it's very important to get them to talk as they will feel that they can't tell you how they feel, sadly and wrongly thinking that their feelings and thoughts are incomparible to yours.  I only found out myself the other day how scared my wife was about losing me when we knew I had cancer, but didn't know the type or extent.   I will be totally honest with you I was relieved mine is HPV+, there is no such thing as a good cancer, but HPV+ is one of the easiest and most sucesssfull to treat.  Though treatment is nothing short of brutal, you have to keep in mind the alternative is worse.  

On saying that we are in the process of creating a neck cancer blog, which I am hoping over time will show that each persons journey is different, and as many for who the treatment is difficult, many also go through it with much more ease.  I very much hope that you will feel up to adding to the blog once it is up ad running.  

Cry as much as you need to, it's a good release.  Never feel like you have to hold it in to protect others or feel that you are being over emotional.  I was so oposite I so wanted to cry, but just couldn't..  I could not find the release.

Be so glad you ave good teeth...  Having 6 removed pre treatment was hell.  As was the adult tonsillectomy...  It was the good tonsil they removed I might add.

Having the coping mechanisms that you have procured through your 13 years in the service is good.  But I know from experience of growing up in a medical family that the coping for others is different from self.  Plus too much knowledge can be a weight.  So do not feel that your coping is braking down, it's a differnet kind of coping.

Even though our cancers are so similar the treatment has been very different.  Elona too has so far had very different treatment.  Hopefully she will be getting her results today, her MDT met yesterday.

Please do stay in touch and keep us up to date.  Feel free to come on this thread just to rant, or just to chat about anything that's not related to the big C.

Good luck

Stay Strong

Al

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.

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 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