Hi Jane

I also have just been diagnosed with cancer in the RHS Tonsil area ( I dont have any they were romoved as a kid 60 years ago) to say I am scared is some understatement also I am so emotional, I have no experience of hospitals and everthing scares me to death. I have a tosil biopsy next week , I have had biopsy of node in my neck<positive> and a PET/CT scan showing the primary as tonsil area.

First I was told it would be just surgery, then surgery and Radiotherapy and following the PET looks like just Radiotherapy will be used although they want to see the results of MIR scan before final decision.

As far as I know and was told Radiotherapy is very pecise although it will destroy some of the good guys near the target area but it is not a blanket area that is zapped.

I am scared of everthing and anything, especially the PEG thingy and the side effects that will come later, I have a terible gag reflex in my mouth so its the worst possible place to have people poking me about.

But we have no choice and have to face it head on. Keep strong!!

Hi CB,

Try not to worry. I'm just recovering from tonsil cancer and whilst the side effects of radiotherapy is no joy the survival rate is one of the highest of all cancers.

You'll probably get 7 weeks x 5 days (Mon-Fri, weekends off!) of radiotherapy (10-15 mins & painless), plus a dose of chemo on your first day and one about 5th week in. It's Grade A world class treatment. They'll probably test you for a virus called HPV, which if you have, bizarrely increases your survival rate further.

You'll probably need to arrange lifts after first week or so of treatment, as you'll feel *** for driving. Get a rota in place for people to take you as soon as you get your treatment schedule. Taxis other option if hospital not too far away, wouldnt recommend public transport. 

Pre-treatment you'll have a PEG or some other type of feeding tube fitted to your stomach as you'll be living on medical nutrient milshakes for a while as your throat being nuked by high powered X Rays will be "closed for business". Eventually this will be taken out post treatment and you'll wean yourself back on to normal food over a few months, sloppy stuff to start, then more lumpy stuff then tougher stuff to chew and swallow still later (I'm still on semi-solids 4 months after treatment but PEG removed).

Tips :

1. Don't worry about Radio or Chemo they aren't painful

2. If offered some "sedation" for your PEG fitting, take them (benzos) as it can hurt a bit

3. You'll probably have to a have a few teeth out on the side of your cancer. These are any teeth deemed at risk of future extraction as they can cause problems with your jawbone if extracted after radiotherapy. Restorative denistry is an option, I'm just chewing on one side of my mouth at present.

4. Worst time is last week of radio and the week that follows it. After that you'll gradually start to feel better.

5. Relax, it'll all be fine. They successfully treat up to Stage 4 tonsil cancer and once it's gone it doesnt come back.  

Oh, and I lost my wife to suicide early in my treatment (unrelated, Bi Polar depression) so if I can do it, anyone can.

No,problem like I said I had no,pain what so ever which in tonsil cancer quite common , aren’t yiu gargling with salt water or baking powder and salt mix to try and smooth yiurnrhriat 

hazel x

Yes I've tried everything :( even my GP has given me throat sprays to ease the pain but it's done nothing. I'm worried if I continue to take paracetamol every day it's going to effect the rest of my body x 

Hello fellow travellers, has anyone worked out the secret to getting some sleep at night. I’m 7 weeks post treatment and my sinuses have kicked off, especially blocking up at night. And when i open my mouth to breathe it drys on completely and wakes me up. Tried all the nasal sprays, decongestants, humidifier, a dozen pillows, but nothing seems to help. Anyone further down the line, any hope of the dry mouth improving...

thanks,

Shaun

Hi Shaun 

I am 4 1/2 months post treatment my sleep is still sporadic but has generally improved a lot , I found Biotene gel helps with the dry mouth , I have tried the xylimelt tablets which stick to the gum and slowly dissolve , these I find a bit hit and miss , working better on some occasions than others . It's a difficult one finding what works best for the individual . I haven't had any medication for months now and my sinuses have been blocked for a few days so I bought some night nurse which seems to help with the sinuses and the sleep . Sometimes the gel doesn't last all night and if I wake with dry mouth which is getting rarer now ,I have a sip of water , renew the gel and back to sleep . Good luck finding what works for you . Keep pushing , it's early days .

Pete

Hi Shaun

i am now  15 min post radiotherapy and dry mouth is still my biggest moan .ok it’s better than the earkybdays but for  example today as been a bad mouth day no ryhme  one reason for it well apart from me saying to hubby this morning umm my mouth feels pretty good .Will I never learn don’t say it out loud !

but like Peter says the bio tend  gel rubbed  unto gums at night does help , I still swear by half a xyimelt. Every night I now get at least 7 solid hours just the odd sip of water no longer 3 glasses n loo trips. Ok no help  to you now just to proof that it does eventually get better. You do need some saliva for the xymelts to work. 

Are you using alchol free mouthwashes ? I use bio xtra which I find good. 

Late you still on any medication s ? As they can interrupt your sleeping patterns .re sinus sorry I can’t help with that other than have yiu tried olbias oil either on your pillow or the stick that you sniff ?

At your stage I did my utmost to breath through my nose and onky out through my mouth try pulling sheet over your head to create a moist atmosphere. I have also started acupuncture have had 6 sessions and it has helped my dry mouth. It really is the pits onky us going through it really understand where yiu are coming from. I also discovered that my uvulva or dangly bit at back of throat git melted during treatment try looking in a magnifying mirror as thatbis also a gland that shoots saliva down the throat I didn’t discover mine had gone until a year after treatment .Another tip if you can tea and coffee dehydrate so try herbal or at least decaf drinks .same with sodas they dry yiu as well. Good old plain water 

on a plus point I’ve just cycled over 800 km in Spain so there’s is light at the end of the tunnel 

Hazel x

Thanks Pete and Hazel, yeah I know its early and I’m actually doing pretty well; almost off all pain meds, eating and tasting most solid foods. I’ve got some saliva but it disappears at night. I am pretty strict on diet, so no alcohol, caffeine, or other nasties.

I’ll definitely try the xylimelts, biotene gel and got my next acupuncture session next week

Hazel, sorry you lost your uvula i must check mine. But amazing effort cycling round spain. I did a bit of cycling back in the day and remember some brutal mountainous  rides in the heat, and wind of Lanzarote.

take care,

Shaun

Hi Shaun thank you my cycling been iver a period of 7 weeks due hime thus weekend so wontbget much cycling in the win andrain if home. Done a few hills  this time  temperature been  around 28 so pleasant but am just pleased to be out. Yes have a look at xyimelts I get mine from mouth ulcer company online plus in day time chemo xyitol chewing  gum constantly that does help. Check the labels in sugar free gum need xylitol to be the it’s first ingredient before sorbitol which dries you good re caffeine n no alcohol  let me know what u think to acupuncture? 

I know we all want torun before we can walk but recovery is baby steps not giant   leaps  just wish the hospital s woukdntbusgeneei oh in a few weeks in woo be back to normal ! 

Yes have a goodnight look at uvulva I don’t know when mine melted !

tak carehazel 

Hazel 

.

Hi so sorry to hear of your diagnosis , I'm nearly 3 months post treatment , and to be honest I'm still in shock , don't think you take it in for a while , and once treatment starts that takes over and u don't have time to think , I had 7 rounds of chemo ,one a week , then six weeks every day apart from weekends of radiotherphy , to be honest they only takes about 15 min , are you far from hospital ? I had a two hour journey every day so it seemed to take up whole day , there is no pain in any of the treatments , the radiotherapy is the worse one , and the side effects are not nice ( I'm still suffering ) but I'm  alive so that's the main thing , no one person is the same so all our side effects are different , if you read radioactive raz blog she gives a no hold bar of everything , and she's lovely will always  help or give advice if u need it , she has been my saviour many a time , hope everything goes well with scan , keep us informed xxxx

Thank you Maria for your kind words ,as the saying goes been there  git the T-shirt read the book etc .only too pleased to help anyone throughit. Have already accepted friend request from Cornwall mum xx hope u r ok and the rains not effected you. 

Set iff hime at weekend brrrrrr am ready for home though lol x

Thank you Maria for your kind words ,as the saying goes been there  git the T-shirt read the book etc .only too pleased to help anyone throughit. Have already accepted friend request from Cornwall mum xx hope u r ok and the rains not effected you. 

Set iff hime at weekend brrrrrr am ready for home though lol x

Hi Hazel no problem you have been lovely , oh bless you weather awful here lol but sometimes nice to be home , take care gonna have nice afternoon kip now lol 

maria xxxx

Just had mine quick 20 min power nap sees me through it yes deffo ready fir real life here’s great but we live a fantasy life it’s nit real. Lol xx

Oh god wish I could just have a power nap but I can't. , never got to sleep bloody dog wouldn't stop pestering me lol , I'm not sleeping at night that's the trouble so I'm bloody knackared all the time , hoping as I've not had any sleep today I might sleep tonight. , yea that's the trouble it's not real life is it be nice if it was haha cxxx

Took me months to have a full nights sleep at least 7 months or so n whatbwith water for dart mouth am uo for loo some nights although this trip I’ve done a lot of 7 hour sleeps !!!!!!!!! The xyimelts do help with dry mouth 

fingers x for u tonight H x

Yea it's horrible ain't it yea have used them few times keep bloody forgetting lol , thank you I've got everything crossed haha xxx night 

maria xxx

So it's starting to get real ! Had my scan last Thursday and now waiting for results , to say I'm scared is an under statement , I was told on the day that my results will go to my dr and should be available by Monday , dunno if I have to phone to make appointment or what ?? Any one else had that , hope u all doing well xxxx

Hi Maria 

umm I got my results from my oncologist 10 days after the scan. Was it a pet ct scan or a ct scan ? I was uve. My appointment before my scan so maybe ring the hospital. Don’t fret am sure all will be fine. Try and sleep tonight let us know what you hear and good luck am sure once agin all will be ok. how are yiu progressing ?

Hazel xx

Hi hazel was a pet/ct I thought I would have to see consultant but apparently not , bloody horrible this waiting , just hoping all ok my last two cameras down the throat were clear so hoping that's a good sign apart from that not too bad , see dietician couple weeks ago , when I had camara down , they were but concerned about my weight but I've managed to put on 5lb since then so hoping they will take my feeding tube out next time , sitill have some sores on one side of my throat , but apart from that and the gunk and the dry mouth I'm ok lol , how about you hope all ok xxxx

Hi Maria ,like younsay  your cameras have been clear so that’s a good indication. Dry mouth still,plaguing me got home on Tuesday it’s dark grey  and rainy as you know lol. 

Had flu jab and acupuncture on Wednesday they knocked me a little for 6 but am good really.how many weeks post treatment are yiu now ? I had my scan at  17 weeks Dr  wanted to make sure that all hot spot s would have gone .sat here trying to eat my favourites plain crisps I know mouth will be dry but a girls got to have some pleasures. 

Please let me know when you hear something,just ring tomorrow not sure if they give them overnight phone know my dr liked to *** at the m d t meeting then tell his patients face to face ,but as we know they are all different  the pet ctbscan is the best scan to have a special it does show a through picture  

onwards and upwards Look how far youve  come  

Hazel xx

Bless u I could kill for a bag of crisps lol , I finished my treatment middle August , I've got a feeling they won't tell me over the phone , but your right we have both come along way , it's only when u stop and think that you realise and I suppose it is still early days yet , well will know soon I hope will let u know tomorrow if I find out.  Off to bed now the morphine kicking in lol so hopefully will get couple hours sleep , enjoy those crisps have one for me haha take care speak soon

maria xxxx