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

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 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

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

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 

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.

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