Hello Phil. 

I'm glad to hear that you're recovering well from your treatment. It sounds like you've got a really positive mindset to dealing with things and that's great. 

We've quite a number of members here on the forum who have been through treatment for oral cancers and I'd suggest in the first instance having a look for posts by [@RadioactiveRaz]‍ , [@Taff123]‍ and [@Anchor1707]‍ . You'll also find in their posts links to blogs that they have written about their journeys and I'm sure you may pick up some hints and tips if you have a read through those posts and blogs. 

It may also be worth giving our team of nurses a call. It may be that they're able to offer some additional support and advice as well. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040.

I wish you well for your continued recovery! 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Phil I am almost 3 years post radiotherapy for tonsil cancer with several affected lymph nodes. The thick saliva does eventually decrease but dry mouth is still with me especially at night time .i chew sugar free gum most of the day make sure  it’s  xyitol as the sweetener at night time I use 1/2 an xyimelt popped in just before I drop off to sleep. These yiu have to buy. But I use a bottle a week if bioxtra mouth wash on prescription. Try to drink at least 2-3 litres of water a day. It does improve for at least 9 months it’s a case of eat to live as opposed to live to eat. I have a blog with tips and my experiences it may help 

www.radioactiveraz.wordpress.com 

food does become pleasurable just takes time. Spicy food I fear I will never manage but hey it’s worth it.

Bread does get better as well

Hazel x 

Hi Hazel

Thank you for your reply. In many ways I consider myself lucky so far. I am able to eat a variety of foods as long as with a sauce or gravy, i think because I am feeling so good physically, my fitness and strength are coming back,   I had hoped mouth would feel a bit better than it does.

i can eat bread just had some peanut butter, but it is an effort. I am just determined to try and eat what I used too.

It is just this awful salty, dry numbness I have all the time, however much water I drink, which means food is more functional. As long as I know some hope this is not forever I can deal with it.

Thanks

Phil x 

Hello Phil 

Phil I had the same cancer I finished my treatment almost a year ago on 17th May . Dry mouth is the Worst for me even now ( sorry ) I find the best thing and as much as I hate it is chewing gum , not any gum bubblemint ! I find the others too strong . I also use xylamelts at night they help you can get them online . I also have problems with my tongue so I have Gabapentin ( nerve pills ) prescribed for nerve damage they help .  I still find eating tricky as taste is off and also I still have trouble swallowing but as my throat muscles get stronger this is becoming a little easier . It's such early days for you hopefully when you are a year down the line things will be better If didnt have the dry mouth things would be easier that's for sure . Worse at night for me prob because I can't chew the gum . Hope you are doing ok it's such a brutal treatment I hated every moment of it . Ginny x x  Oh the mucus for me was temporary awful but went as quick as it came & this mucus can make you feel sick especially if you had a PEG like we both have had . X 

also you are eating bread ! I have only just started back on bread so you are doing so well . Peanut butter is my go to protein in a shake ! I have a jar a week yikes ! X

 BUT DRY MOUTH IS IMPROVING ! It was way worse than it is now and I needed constant sips of water . X x 

Hi Ginny 

Thanks for the reply. yes not a pleasant treatment. I got awful mouth sores, ulcers and had awful mucus. Nothing I did would clear it. One of happiest days of my life to get the food peg removed. 

i know I am so far lucky, with everything and I hope your recovery continues.

i am just focusing on my fitness and that I need food to fuel this, so trying to think of food in a different way at the moment .

Phil x 

Hi Phil 

Glad to here you are doing well.

very similar treatment etc to you, although mine was throat cancer, and also ended up getting neck insection to remove around 13 lymphnodes.

9months since last Radiotherapy, saliva still only making about 5-10%, so taste buds are still pretty useless too.

Admit not had any thick saliva,,,,TBH I just have bottle water with me at all times, only take water, or tea,coffee ( but use a whitener as opposed to milk) Dairy seems to leave a skin in my mouth. 
admit it's hard to retrain yourself on the basics of eating and drinking....Am using opportunity to eat and drink more healthy than ever, and look after myself, i feel I owe that to the health professionals and for the people who are not so lucky.

Good luck with your recovery

bobby

Hello Ginny

Hoping you still look at these posts, and you are well.  I'm waiting MRI results but I suspect I have HPV base of tongue cancer (side of tongue, at back).  I have to pull my tongue out to the side to see the area in question. I have a feeling they wont do surgery.  It's been growing I imagine for nearly a year. My symptoms were all in my neck. Pain but no lumps.  Wasted 6 months being sent to physiotherapists by my doctor.  How does it work if you don't have surgery? Can chemo and radiation cure it.  Or keep it under control? I'm 61, never been ill, worked full time.  Don't know how I'll remain positive. I feel like I'm about to jump off a cliff. I've done loads of research and as yet don't know how bad it is but trying to prepare myself.  Not having surgery sounds like a much better option if it works.  

Diane

Hi Diane

I hope you do not mind me replying. I was diagnosed with Tongue Based Cancer in October of 2020. It had also spread to right hand side lymph nodes. The cancer HPV and had been growing for probably a year. The tumour was quite large under my tongue,  I was very fit at the time aged 56 when diagnosed, never been ill.

My treatment was 6weeks Chemo and Radiotherpahy. I had Radiotherpahy Mon to Friday with a weaker dose of Chemo each Monday. I am now just over 12 months into remission and yes still  side effects with dry mouth and some food items taste unpleasant, but I can still enjoy various foods, and enjoy life to the full, in fact it has totally changed my outlook on life, what is important and no sign of the cancer.

Please do not give up, if you do get advised to have this treatment, which I thought was fairly standard for this type of cancer. I know another person who had this same type of cancer, same treatment and he helped me through my treatment and he was over 5 years in remission.

Everyone responds differently to this treament, but it does work. If you need any advice once you get your diagnosis, if it is the same treatment ,then I am willing to share my experiences, each will be unique to the individual, so I can only share what happened to me through treatment, how I coped and after. Of course I hope the diagnosis is something else and it is never easy waiting for this. 

Thanks

Phil

Hi Diane

I was the fittest I had ever been, and so I felt great, I just had some trouble swallowing at first not much just bread got a bit stuck in Septemner 2019 I remember it well as I was eating a sandwich and stayed that way, then in April/May started to get worse with swalloiwng, so I got checked out with a tube down stomach in June/July and they said all fine, gave me some tablets to help, even though not showing any issues, just a bit of imflammation in the stomach. I should have had an immediate folow up with an ENT specialist which I finally did end September and immediately he said got cancer, and he felt a lump on my neck which I had not noticed. I then had all the tests to confirm. That was probaly the worst part. They said no point doing surgery as would still have to do the Chemo and Radiotherpahy. I think 6 weeks is the maximum they do as that should be enough time to kill of the tumour, they work it all out based on size of the tumour, so could be less than 6 weeks.

From what I know and I am not a Doctor,if diagnosis is same as mine then you will probably be offered same treatment, I think that is the standard treatment as they want to kill off any cancer cells that may be lurking, so I had radiotheprahy which also targetted the left side, even though nothing showing that side they didnt want to take any chances. 

I know it is easy for me to say this, but at the time of diagnosis I only had one thought in my head, this cancer is going and thats it. Like you I worried myself sick waiting for the diagnosis and googling everything. As soon as I got my diagnosis, and treatment plan,  (it  was almost a relief to at least be told what it was ) through treatment and recovery I avoided googling or looking up anything. I just followed everything I was told to do and asked the specialists treating me if I had any concerns. 

Phil