NEWBIE and REACHING OUT ——- Tonsil &Lymph nodes HPV16

Thanks for response and congratulations on the five year appointment . I’m sure the blog will offer insight with regards the RT.  I’m hoping for a miracle and I not need it but surgeon not as positive . Will have a look at your blog throughout this evening .

Thanks

allana

Hey, thank you for the message.  
i escaped from hospital earlier today.  A few hiccups on medication plans.  Turns out I’m not a fan of Morphine and the anti sickness meds to combat this makes me sick.  Yip I am that person. 

I thought I had escaped lots of the niggles of the neck dissection but as days go on and anaesthetic wears off I can feel little issues.  

Weirdly content in my head that they have cut away as much as they could see.. another waiting game on pathology results.

will be back in here as a constant annoyance to you all with more and more questions.

Allana 

Hi Allana

Fire away with any question you want answered ...or just an occasional rant....we've all been through the head and neck cancer mill....always be someone looking in at this forum.

Take care and best of luck

Peter

Hiiiii…

I know how you feel, I had to reach out to this group loads last year!

I had pretty much same right tonsil removed by Tors and lymph nodes, but as it was found to be in 1 lymph node had to have radiotherapy, I finished my treatment last May 23. I still have a sore mouth and eating issues but I’m getting better all the time. I don’t enjoy food anymore as my taste isn’t the best either.

my scare is hardly noticeable now it’s so neat but I do get a stiff tight numb neck sometimes, but it’s all manageable.

i am also on the pathos trial so yes you see the doctors more often which is always reassuring.

Any worries or issues just ask away but your Do tors and support nurses are all amazing and have meds and creams for everything. 
if you want to chat let me know

caroline x

Hi Caroline

thanks for the response.  It is reassuring to read how we all have similar stories and hear all your real and positives outcomes.

im assuming that because they knew I had cancer from the neck biopsy then the nodes they removed will show I need further treatment.  My appointment is Friday so will be back on with more questions I’m sure..

I have the weirdest pain in my face and ear which I kinda knew could happen but I have pain in the back of my neck,head and shoulder.  Does that sound familiar or maybe I’m just holding myself weird!!

Sorry to hear you still having issues with food.  Hopefully it will improve ?

Regards and be prepared (sorry)

Allana 

Hi Alli,

I had stage 3 and went through 2 chemo sessions and 30 radiotherapy sessions. Use the cream to get moisture into the neck from the radiotherapy and have an exercise regime so you can lesson fatigue. Also mouth hygiene and mouth exercises also important. Hope that helps.

Lee

Thanks for the advice Lee

My hospital appointment for today has been cancelled as still awaiting latest Pathology results and I was planning on asking about mouthwash etc so it’s weird you mentioned it .

Ive not started radiotherapy yet but already I seem to have really bad gunge around my mouth (sorry gross) making swallowing tablets or anything pretty much impossible.

anyone have suggestions on what to buy ?

thanks 

Allana 

Hi try soda water the bubbles can help disperse tgr mucus. Bioxtra gentle mouthwash plus gargle with salt and Bo carb mixture teaspoon of each in litre of water. 
hazel x

 Thanks - will try each and every one of them.

Im panicking a little about the radiotherapy if I’m already so whining at this stage.

Allana 

Hi Ali

It is only natural to be concerned about the unknown, I know I was. Just take one day at a time. It is usually at least 3 weeks before the side effects start to kick in and you will get lots of advice on here and from your medical team how to cope with them. The pain killers can really help. It is a tough time but you will get through it. I had a bit of a blip half way through radiotherapy but my wonderful consultant encouraged me and that really helped. In the end you just grit your teeth and work towards the end date of the radiotherapy as that is all you can do. You can do this.

Sending hugs

Lyn