Hi folks,
I’m Nigel, diagnosed with tongue tumour and lymph node cancer in October 2024.
I had chemotherapy and radiotherapy treatment through December till 10th January this year. Had week in hospital towards the end of treatment due to a severe chest infection - it took a month + four lots of antibiotics to clear.
This is my first encounter with cancer - so I guess like s many others, quite a fear factor deep routed.
in the early stages after treatment , I had lumps and bumps appearing all over my neck and throat - even a size lump under my tongue. Also suffering the most incredible dry mouth (still do) soreness in the back of my throat and tongue.
after getting the physician’s to see me, eventually I had an endoscopy, I was told my throats in a mess and that I had a serious bout of oral thrush and that my throat was covered in a large ulcer. And suspicious cancer on my tonsils I had something for the thrush and kept the oral cleansing practices. - 6 weeks later I had my first MRI (3months since my radiotherapy finished), followed a couple of weeks later by an appt with clinician who seemed only up to date on the tonsil bit. It took a little while before the fellow understood that the primary tumour was on my tongue. After reading my notes, I then had a endoscopy, which was so much n comfortable, I was in quite a degree of pain. I also had an physical examination of the base of my tongue, quite something but I guess necessary. I was sent for a pet CT scan as there are a number of things to be identified. I have had the scan but since the examination have been in a degree of pain and back on the morphine, which so does help. Now it’s a waiting game to see what has been found - I can only say as I feel and I am bricking it!
Has anyone any experiences of similar or the like that can help me cope with mine? - I am in a really difficult place and struggling , if I’m honest
Hi Hazel - thank you so much for getting in touch, yes I gargle regularly with salt water and use the mouthwash. Until I got prescribed flucozonole, nothing was helping the oral thrush, but just completed my first course and my tongue is much better - did you have just the one lot or is it something you take more of?
since my last oral examination a few weeks ago, I suffer with pain under my tongue, around my jaw and the tonsil area, only helped by taking morphine- it comes and goes especially when I eat /drink. Have you encountered anything like ?
I go for my appt te petct scan results on the 14th - have to save I am so worried what has been found.
tough times.
yhsnk you Nige
Hey Tay, good to hear from you - the waiting are some of the tough times !
on aside, seeing the impact on my wife, bless her she’s struggling enough with her own health problems!
hope you’ll well - Nige
Hey - Hazel, you have the same outlook as my wife, Ellise is my rock and so positive around me.
The main tumour was in the base of my tongue but with several cancerous lymph nodes. I had an early endoscopy a couple of weeks after my end of radiotherapy, in the diagnosis was stage 1 cancer in the tonsil and one or two other things they couldn’t confirm and I needed to wait till the 3 month mri. Since then I have had the 3 month scan and that’s when he referred me to have petct as couldn’t tell somethings around my tonsil area and roof of my mouth.
it’s the area I have pain now that I didn’t have previous to the docs oral examination.
hope all’s going well with you.
Nige
Hi, good morning, I forgot to confirm that yes I’m hpv +
