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Recovering from Tonsil Cancer

REEVSEY
Posted by

Hi All. Recently joined. I’m 7 weeks down the line having had two big ‘chemo juicing’s and six weeks of combined chemo and radiotherapy. It looks like my prognosis is positive and yet here I am suffering incredible pain/discomfort in my neck/throat area which is stopping me eating orally. Even taking water on board is impossible - I’m guessing that the lining of my throat is ulcered and raw. Can anyone relate to this? I’m on a number of pain killers including a treatment for thrush (nice) but nothing seems to be helping and I am destined to feed myself syrup based milkshakes through a stomach peg for the indefinite future! I can put up with not smelling or tasting food but I’m so keen to be able to eat normal food in order to try to put on the 25% of body weight I’ve lost during this process ’ 

Reevsey
latchbrook
Posted by

Hi and welcome to the online community

I'm sorry to read all you've been going through but you've come to the right place for advice and support. I see you've already joined and posted in the head and neck cancer group and I'm sure you'll get lots of support from the people there.

I do hope you'll be able to eat normal food again.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

julesey7
Posted by

I can certainly relate! I’m three days post chemo radiation x 6 weeks!

its hell! Can’t hardly swallow, ulcerated mouth, thrush and the foul yellow smelly mucus that makes me dry reach constantly. I have a peg but don’t really use it but I’m not eating much either! Looks like I’ve got a way to go because there are people months ahead of me in recovery still having problems!! 

Im mostly positive and thankful that my prognosis is ‘aim to cure’, but I’m finding it all a struggle now. 12.55am awake in pain wondering when this will all end. 

Diagnoses - right tonsil SCC, HPV positive PT2 NX, surgery,

Tretament - daily Radiotherapy and 6 x weekly Cisplatin Chemotherapy

Kindest regards 
julsey 
REEVSEY
Posted by

Julesey

Strangely reassuring to hear that someone has/is experiencing almost exactly the same effects as me! I’ve been in/out of hospital having contracted an infection that subsequently required x3 blood transfusions, in addition the drugs have bunged me up and that has been terrible. Ive now developed an ear infection which again appears to be ‘one of those things’ and am desperate to eat ‘real food’ but can’t. I have become a slave to the Peg needing to consume nearly x9 Ensure milkshakes per day and they are rank even fed directly into your stomach.

If it’s any consolation I had the camera down my nose last week to see if anything untoward was going on but thankfully all is ok however as expected, my entire throat is red, swollen and ‘fried’. The consultant was upfront and stated ‘you’re not there yet’ and said that around month 3 (ie another x4 weeks from now post treatment) is when he expects things to be turning around and improving!

I’ve been wide awake too during the nights with chemo feet. & hand jitters which are horrendous. As you said, lots of waiting ahead - just stick with it mate and be positive, it’s a short term pain for a long term gain...

Keep us updated. Good Luck

Reevesey

Reevsey
Blackpool Ann
Posted by

Sounds as though you have both been through the mill. I am now three months after my chemo/radio ended and am just starting to see improvements. I was told a peg was not necessary, but have really struggled with eating from week 2 of my treatment.

Two weeks ago I finally was able to start on 3 small meals a day of very soft food. It is a real uphill struggle. I too had severe mouth ulcers and oral thrush for a full month after treatment and thought it would never end.  This week I also reduced my Ensures to 2 daily and stopped the morphine. 

Now feeling more positive about my long term prospects although there are still dark days.  Keep going we have to beat this cruel illness as iit must not beat us! 

Kags_and_Bri
Posted by

Hi all

I finished six weeks of radiotherapy and chemo eight weeks ago and have experienced similar side effects to everyone here. I am now however starting to come through the other side - my taste came back about 4 weeks ago and I could then cope with trying bits of food. Initially I just put the food into my mouth to confirm that it tasted ‘right’ (stolen from other people’s plates) then I moved on to soups and custard with stewed fruit. I have found that progress is slow but I now have confidence to try more solid foods that need a bit of chewing like vegetables and small pieces of meat. 

As I have also suffered all the way through with thrush I find dairy foods a bit challenging as they increase the secretions in my mouth, but again this is gradually improving and I can now tolerate rice pudding and mozzarella. I should say that the amount of food I can eat at one sitting is very small so I am still having most of my food through the Peg, but I am motivated by small advances each week. In particular it is getting less difficult to swallow and I have now been able to reduce the amount of painkillers I am taking.  

Whilst everyone’s recovery is clearly different I hope this gives you some encouragement, even though progress is very gradual.  Good luck!

Karen

julesey7
Posted by

Hi everyone, thanks for yr replies. I’m concered to hear of these issues 7 weeks post treatment, my gosh - that means I’ve got another six weeks of hell! *** Big sigh and sad face! ***

So day 4 post treatment and still got sore mouth (I know very early days) and can’t eat anything even water makes me sick. However I did manage some packet chicken noodle soup last night, not really enough calories in that though. 

My tongue is on fire and im sure it’s thrush - bloody thrush exasperating the situation further just bore off will you!!

Sooo I’ve started putting the odd ensure down my tube yesterday but there no way I could put four or six a day as my stomach has shrunk that much it just goes in back out. I never realised your stomach was so high up in our anatomy I assumed it was lower and bigger tbh. My tube is annoying, hangs around in the way like a skinny penis, but glad I’ve got it I guess.   

Mucus is still HELL, why is it yellow and smelly? I can’t tolerate this horrendous vile side effect 

im afraid my doctors and nurses will have to except I’m loosing weight, I’ve gone off food and I’m eating to survive but it’s hard. I realise I need food to heal and I’m trying but I can’t take being sick all the time because that really strains my neck and throat as it’s so violent.

Good news is my sense of smell has returned to normal and I tasted a carrot last night and it tasted like a carrot and the chicken noodle soup was chickeny! I have a list of food I can’t wait to eat although not healthy lol and my diet before this C malarkey was super healthy. 

I’m craving a cheese and ham baguette, Mac Donalds breakfast, dominoes and sushi Once I’ve eaten these I’ll get on the healthy diet again. 

I can’t leave my room or house at that matter as I need to be by my spittoon (a cool metal bin from ikea with lid)! I have a tip regarding this - I’ve put cat littler in the bottom to soak up any funds or if I spit in there with any type of mouth wash etc. I can’t keep going to bathroom doing this a million times a day. I also oil pull by swiging with 100% pure coconut oil, this can help with thrush and good for the teeth. I find it also soothes the mouth.

Im using small bottles of soda water because the carbonation helps loosen the muck! I’m still brushing the teeth well using a babies tooth brush, the bristles are soft and the head small isn’t intrusive in the mouth. 

Quick question - Another thing I’m getting are small sore blisters that look like colds sores but around my neck front and back. They are tingling too so I’m worried about that. Anyone else had this? And hicccc upps? 

Other that this I’m doing ok just have to wait the 12 weeks for the scan to see if this horrendous treatment has been successful - hoping I don’t stress too much about that. And obviously desperat hear good news  

.......anyway wishing you all a tranquil evening with no pain. Xx

Kindest regards 
julsey 
julesey7
Posted by

Oh wow you had the tonsillectomy HELL also!

WTF how painful was that? I’ve never ever felt anything like it! Infact I’ve based a lot of this treatment pain level on that - I’ve only really hit the tonsillectomy threshold pain this week (week 7 day 2) I woke up in the early hours and thought Wow this is bringing back tonsillectomy memories! That’s when I took my first bit of morphine for this, I had some left over from the surgery.

When they did my tonsillectomy they left nothing, they took everything they could. Looked like a bomb had gone off in my mouth, unfortunately the margins were not clear hence the treatment. Right tonsil was full of SCC but the left tonsil was clear.

My cancer is/was HPV 16 positive but I hear that’s better in terms of long term prognosis. My actual staging is PT2 NX HPV 16. Think that’s stage 1 or maybe 2 (hoping) apparently these cancers respond  very well with radiation and aiming to cure me - happy days! 

They initially told me no spread then said they thought there might some minor spread in two lymph nodes but the PET scan didn’t pick up anything anywhere thankfully! 

Anyway.........Both treatments are pretty awful and I don’t wish to do either ever again......

Take care - I’ll be back to moan some more I’m sure  have a peaceful evening - jules 

Kindest regards 
julsey 
REEVSEY
Posted by

Tonsillectomy Hell is bang on the money...

I had two tiny bleeds lasting about 5 to 10 mins before stoppping a couple of weeks after surgery. Needless to say I found out ‘after the event’ that any bleeding after losing your tonsils is usually down to infection! I wish I’d known that because the next Saturday evening I woke up in bed with what felt like a tiny hose fizzing bloody across the back of my throat. Thirty minutes later and nearly three pint glasses of blood my wife rushed me yo A&E where I went straight into resuscitation and my left ventricle started to fail as a result of the blood loss. Somehow my body clotted the wound and I was blue lighted to a specialist ENT Hospital for the aftercare.

They day that adulthood tonsil removal isn’t nice but for me it became the single most horrific event of my life. It makes me shudder to think about it now but it’s behind me so onwards and upwards.

I saw you mentioned about blisters on your neck earlier. I got that - it’s severe sunburn from the Radiotherapy so if you’ve still got it treat each wound like a real deep tissue burn using an appropriate liquid and dressing. Unlike ordinary skin wounds they need covering to heal until they get to a certain stage then open them to the air. I found my burns needed to be covered for about two weeks or so and changed twice a day because they ooze and stink!

Reevesy

Reevsey
Shannon1970
Posted by

Im sorry to hear what youve been going through, i was diagnosed with  high risk hpv this year and feel like im not being listened too. Ive been having problens with my throat ..sore for the past 3 weeks;burning in the roof of my mouth, an anesthetic type numbness in my lios/jaw. I also developed a lump on my thyroid which will be ultra sound in oct. Im worrying sick about oral cancer and am making myself sick snd dont know where to turn.3 weeks ago i developed a sore on the back of tonsillar pillar which looks like a circle with a deoression in the middle. I know these symptons could be anything, but just wanted to know if any were similar to what you or anyone has experienced. Im terrified. Thank you

Shannon

Shannon1970
Posted by

Im sorry to hear what youve been going through, i was diagnosed with  high risk hpv this year and feel like im not being listened too. Ive been having problens with my throat ..sore for the past 3 weeks;burning in the roof of my mouth, an anesthetic type numbness in my lios/jaw. I also developed a lump on my thyroid which will be ultra sound in oct. Im worrying sick about oral cancer and am making myself sick snd dont know where to turn.3 weeks ago i developed a sore on the back of tonsillar pillar which looks like a circle with a deoression in the middle. I know these symptons could be anything, but just wanted to know if any were similar to what you or anyone has experienced. Im terrified. Thank you

Shannon

julesey7
Posted by

Hi Shannon,

Try not to worry until you have to! Just because you’ve had a HPV diagnosis previously it doesn’t mean you WILL get an oral or cervical cancer.

However, yr symptoms do need looking into. As you say it could be anything BUT insist you are tested do not be fobbed off.

It may well be a nasty infection - tonsils are funny, smelly infection attracting lumps and mine have caused me problems way before the cancer arrived. Glad they’ve been but out and chopped up. 

Take care and keep us updated!

PS - Try not to read too much on here unless you have to - it will only increase yr anxiety 

Kindest regards 
julsey 
julesey7
Posted by

Wow - sounds horrendous and then all of this on top - we’ve certainly not had it easy! 

Im having by far my worst day yet! Totally reliant on tube today my tongue has sores either side that are burning with just water. 

Ive manged one ensure down the tube but that’s it. I just feel so sick. 

Someone just shoot me! 

Kindest regards 
julsey 
REEVSEY
Posted by

Julesey

Keep your chin up! I’ve had moments like that too. I’m so desperate to eat real food and being tied to the house because the necessary PEG regime is a pain. Stay focussed and get those Ensures down you, you need the nutrients to keep your body going - I’ve found out the hard way and do keep syringing as much water as you can!

i think it’s just going to be time that heals and take each day as it comes. My consultant keeps saying I must eat and to look at stodgy, mooses, choc puddings etc but when your throat is so sore and swollen it’s so difficult even when taking painkillers half an hour before!!!

Reevesey

Reevsey
REEVSEY
Posted by

Shannon

Julesey is right but from my experience I’d say press, press, press! I was referred to a consultant initially who was so slow on taking me on board (NHS - although I thought she was a private consultant) .

I phoned and emailed her secretary again and again worried sick as you’ve explained but didn’t really get anywhere. Turns out that the HPV in the throat as I had it in my tonsils was (a) very treatable, (b) very early on and (c) in the grand scheme of things my cancer was less of a priority compared to other cases in front of her hence I think I was put at the bottom of the paperwork pile (although I was never officially told this).

Its your life, your physical and mental health that’s at stake, I would encourage you to politely and persistently keep chasing for appointments or updates as time is a key factor. Don’t worry yourself unduly as Julesey says but it’s tough for me to say that because when you’re told you ‘might’ have cancer the ‘word’ and everything about it consumes you and you have every right to be worried   

Reevsey