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.

Thank you just ain’t going to let Cancer Define me !

Hazel xx

i really wouldn't worry about blood tests. I had that many i was sure they were vampires disguised as medics. They all turned uout to be a bit of a high reading or low reading on certain things but nothing serious a bit of medication could sort out out pretty quickly.]

don't worry about cancer returning, apparently it's a type that doesn't anyway, and the cure rate is incredibly high. just all part of the process. I look back (finished treatment Nov 18, got 100% all cealr April this year) and it all seems a distant memory that I pay very little or no attention to now. 

Dry mouth and swallowing some foods continues to be an issue but not insurmountable by any means. They say give it two years after the end of your treatent and that's how good you'll be from then on.

All the early hassle and side effects soon fade into the background as time moves on. We've all been there and are still here fit and well and dishing out advice to people going through the same stuff we did, more or less, even though everyone is slightly different in what side effects the treatment has on them.

Above all don't worry, it'll all turn out ok before you know it.

Hi Hilts911

thank u for your reply , it's so nice that people take time out to do that , I know what u mean about taking blood it's every five min , so glad you have all clear and continue to get better it's lovely to hear 

Maria xxxx

Hi Maria,

Thanks for the kind words. Things do move slowly to start with in terms of recovery but almost imperceptably day by day things improve, until one day you think "what was all the fuss about, I had cancer, beaten it, and I'm ok now!" 

Thanks again for the kind words think some days I just get in a rut and feel like it's never gonna end , but I know it will coz you are all proof of that so thank you xxxx

Hi Maria 

It is the toughest of journeys but you will get there . I am just over 3 1/2 months post treatment and I still get the odd bad day/night , I had the results from my 3 month post treatment PET scan on the 2nd of October and got the all clear , no sign at all of the nasty stuff !!!Try not to worry too much about the blood tests and focus on recovery , easy to say I know . This forum has been a huge help to me all through this process , it is great that people that have been clear for a long time still post advice and support . 

Good luck with everything 

Peter 

That's great news peter so happy for u , it's not the nicest time is it never realised it would be this hard and I'm quite a tough cookie haha but suppose always one thing gonna take u down and feeling sick is my biggest hate of all time , but your right everyone here is amazing so glad I found this site , thank u for your reply and again so happy for you xxxx

So 10 weeks approx post treatment and still not feeling any better , can't eat at all so many sores in back of throat , so living on shakes , constant thick gunge in throat , driving me mad now , really thought would see a bit of improvement t by now , give me some  inspiration please , feels never bloody ending xxxx

maria

Hi Maria

imspiration 14 month post radiotherapy I biked up and down 2 mountains today 62 km in total ! Hang in there you can do it ,just babybsteps . A year ago I could do 8 Km on bike and that wore me out At 10 weeks I was still in ensures and cal shakes mostly ,with odd bits of food , I did manage Christmas dinner if sorts 17 weeks post radiotherapy it will come slowly. Just need to keep throwing the Hi gh calorie shakes down  are  you still  on painkillers ? Try some Luke warm broth nithung too hot we used to use slow cooker with shun beef in it carrots Andy onions plus a little consommé soup cook for hours hubby had the meat and veg I sipped the broth worth a try. It’s a long road but there’s is light at the end ifvthe tunnel just a few bends in the road .have yiu read the dr peter Harvey article After treatment what happens next ? Yiu can find it  online it’s written by one of the drs at my hospital otherwise I wouldn’t recommend it  

Hazel xxx

Hi Maria 

I am 17 weeks post treatment and right up to weeks 11 to 12 I found really tough much the same as you . The ulcers were horrendous and no pain relief seemed to work apart from Xylocaine spray which didn't last long , it really is the toughest of mental and physical struggles that during this period I couldn't see the end of , BUT it is quite amazing how the body can heal, the difference I have experienced since about week 13/14 post treatment has been amazing , the mouth ulcers have almost completely gone , the last two weeks I have regained my appetite and the last week especially have been eating 'grown ups' sized dinners for the first time in months . The hair I lost at the back of my neck due to the radiotherapy has grown back , the radiation burns to my neck have faded so much that they are hardly noticeable , I am also in my third week back at work as well as back at the gym. I am tired sometimes more than usual but this will dissipate in time. Sleep has been poor since my first day of treatment , waking 3 to 6 times a night ever since , but I got prescribed some sleeping pills which are breaking the habit of waking so much , it must be habit now as I am pain free . I know exactly where you are currently and although hard to believe you will improve , it just takes time and effort , the effort being the tough bit . Key thing is calories , I primarily lived on Farley's rusks , full fat milk , Fortisip and Actagian drinks , the protein content does help the body heal . I am not 100 % what I was but am getting there .Everybody on this forum , especially those ahead of you in recovery know exactly how you are feeling .You will definitely get there , just keep going , you are not alone . Look at where Hazel is 14 months on .There definitely is light at the end of the tunnel !! If you have any questions please ask 

all the best 
Peter

Hi Maria 

I am 17 weeks post treatment and right up to weeks 11 to 12 I found really tough much the same as you . The ulcers were horrendous and no pain relief seemed to work apart from Xylocaine spray which didn't last long , it really is the toughest of mental and physical struggles that during this period I couldn't see the end of , BUT it is quite amazing how the body can heal, the difference I have experienced since about week 13/14 post treatment has been amazing , the mouth ulcers have almost completely gone , the last two weeks I have regained my appetite and the last week especially have been eating 'grown ups' sized dinners for the first time in months . The hair I lost at the back of my neck due to the radiotherapy has grown back , the radiation burns to my neck have faded so much that they are hardly noticeable , I am also in my third week back at work as well as back at the gym. I am tired sometimes more than usual but this will dissipate in time. Sleep has been poor since my first day of treatment , waking 3 to 6 times a night ever since , but I got prescribed some sleeping pills which are breaking the habit of waking so much , it must be habit now as I am pain free . I know exactly where you are currently and although hard to believe you will improve , it just takes time and effort , the effort being the tough bit . Key thing is calories , I primarily lived on Farley's rusks , full fat milk , Fortisip and Actagian drinks , the protein content does help the body heal . I am not 100 % what I was but am getting there .Everybody on this forum , especially those ahead of you in recovery know exactly how you are feeling .You will definitely get there , just keep going , you are not alone . Look at where Hazel is 14 months on .There definitely is light at the end of the tunnel !! If you have any questions please ask 

all the best 
Peter

Hi Peter. Glad to hear you are continuing to progress, thank you for kind words ! as they say been there done it gotbthe t shirt read the book etc. But yes agree protein is the key along with gentle exercise, ive read in the first year W should be trying to eat the equivalent of running a marathon a day just to repair what treatment did muchneasier said than done , I still have bad eating days  but always have Ensure in the fridge for this evening just in case days , hubby fancied pizza the other day and salad two words which really put dread into me but though hey he’s suffered enough so gave in ,yep couldn’t eat much if it so out popped the trusty Ensure to Ensure I got enough in my body to enable me to carry on biking. 

Rant over lol

Hazel xx