Hi All,
It’s been a while since posting on here so I thought I would provide an update.
So, “all is well”, according to the surgeon, relating to the successful removal of the tumour in my right Buccal mucosa. However, I did have a second diagnosis 3 months ago which is a slight swelling of the lymph node in right level 1a (11mm) as discovered by a neck ultrasound. Both myself and the surgeon clinically cannot see or feel any swelling in my neck and so for that reason I did not have the follow up ultrasound aspiration - I would rather leave well alone. I realise that is my personal choice and not for everyone. In the meantime I am due to have a second ultrasound in 2 weeks, but I still don’t have any visible swelling in my neck or any discomfort there. My own feeling is that the surgical treatment I had, which led to an infection at the time as well as difficult healing and severe nerve pain, means that the lymph node in that area is working overtime to get rid of toxins that wouldn’t normally be there. I have not been offered a blood test, so I’m going to ask for one ahead of the second ultrasound to rule out the presence of a lingering infection.
As a side note, the severe mouth nerve pain at the site of my surgery is unfortunately proving very troublesome and am now on 30mg amitriptyline as well as paracetamol, which is helping enormously. I was rather annoyed as it had been settling down very well and then on my last examination by the surgeon for some bizarre reason he decided to express the saliva gland (without any reason as my saliva has been fine) and now I am back to square one with the nerve pain. I had expressly told him to be gentle on his examination as the previous time he was quite rough and I was very sore for some time after. Anyway, hopefully it will settle down again once more.
To be honest if it wasn’t for the nerve pain and this second diagnosis, I would have said that I’m 100% over it. Emotionally, I REALLY want to move on, but now there is this cloud hanging over me. I’m forging ahead, making plans for nice trips away and having wonderful days out with my 2 year old granddaughter, but you can never fully stop thinking about it.
Hi Raewyn
I remember your posts and I’m glad you are recovering. Sorry there seems to be a hiccup.
For me I would be pressing for a PET/CT to rule out cancer if the next ultrasound is inconclusive
You’re bound to be feeling up and down and getting away with the family must surely be the best tonic in the world.
Have you anything solid planned already?
We like to hear where folk are going. It lifts our spirits too
Have a read of Peter Harvey’s piece on recovery from cancer. (Our treatment is particularly aggressive and takes a long time to recover from even if we look ok ) It hits the spot for a lot of us. I printed some copies and gave them to friends and family
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
I remember reading that very useful blog when first out of hospital…I’ll give it another read!
Thank you for the advice re PET Scan. I’ll bring it up at my next meeting with the surgeon in October.
So in May I took myself off (on my own, without hubby) to the Algarve for 10 days (all inclusive). I was feeling like my house had become a hospital and my husband the nurse 
. I just needed time alone to process everything that had happened in the previous 4 months since diagnosis. It was absolutely the right thing to do and tears were shed but overall it did me the wor of good. Then I came back to diagnosis 2…not so good. Anyway, since then I’ve been on lovely trips to the Cotswolds, Southwold and next up to Yorkshire and then Devon. Hopefully, will be okay to gobroad for some winter sun early next year. I’m retired but not on State Pension, but figured I won’t be able to take my private pension pot with me so I’ll spend it all .
Good for you. Your perambulations sound like just the thing. I love the trip to the Algarve. There are times when we all need space.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Good evening Raewyn, its seems you need reassurance so as Dani and Hazel have said press for more scans just to put your mind at rest, also let the surgeon know how unhappy you are with his examination as they tend to take things for granted, im sure if you started to prod around his/her body they would not like it if it caused the pain to increase. You are right we never fully stop thinking about it but as the years go by it becomes less of a worry and you can look forward to many trips away with your family 
. All the best.
Chris
Its sometimes not easy but its worth it !
Thank you for this update Raewyn, well done with the ultrasound results especially after your previous one being a bit upsetting for you. You should be able to gradually come off the amitriptyline with the pain easing with time. Carry on the good work, take care.
Chris
Its sometimes not easy but its worth it !
