Hi folks
my journey began in august 2024, sore tongue when swallowing and some blood and pain when I brushed my tongue as part of teeth cleaning.
after being sent for some tests , I eventually got to see a maxi facial surgeon who within 10 minutes of meeting/examining me, sent me for ct, mri, ultrasound , X-rays and endoscopy- the result being tongue cancer (base of).
long story short, I had chemotherapy and radiotherapy which finished 10/1/25. I contracted a chest infection and ended up in hospital on New Year’s Eve for a week - but the infection lasted a month, coughing up Al sorts , struggling to breath sometimes, until I was given strong antibiotics (4 lots).. it put my recovery start back by a good month. I must admit it caused huge anxiety, depression as I was struggling to get support in the early stages of recovery - I couldn’t get anyone on oncology department or my macmillon nurse to returns calls or reach out to me. I was struggling - still am!
I had developed ulcers covering the throat and roof of my mouth and oral thrush - desperate for help, my doctor sent email to the cancer team, asking for me to be seen, the only response was to wait until 3 month scan. Eventually seeing a doctor , two weeks ago, I have since been for a petct scan and put on strong medication for the oral thrush; as regards the ulcers, concerns as to what is happening with my tonsils and other “unknowns” - worried sick as to what sinister things are happening/developing.
I have developed a large lump under my tongue,separate to the original tumour, my tongue has become painful when eating and drinking and lumps in a number of places in my neck. I’m now waiting on contact from oncology team to see / review of the scan findings.
I have been struggling incredibly as my mind has taken me to some really dark places, the fear of what is developing in my tongue /throat and the pain and discomfort.
I’m fortunate to have a caring supportive wife , but the struggle is getting help and understanding from the oncology team -
Has anyone had experiences of the same or can help me in any way - please.
Hi Legin13
I am Dani and I hang out in the Head and Neck Cancer Group Just click on the link I've made and copy your post there.
I had base of tongue cancer and I'm over six years clear now
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani - thank you for contacting me .
I’m not in the best place at the moment - I’m struggling - waiting for the petct scan results and the abject fear of what’s going on in my throat/tongue and neck.
This is the worst time. You w been here before and the thought that the cancer has already spread will drive you to distraction. I understand that. It’s awful that we have to continually advocate for ourselves. Your PET results will already be known to your referring consultant. Get on the phone to their secretary and your CNS straight away on Tuesday.
Don’t give up till you get some sense out of them.
Meanwhile your GP should at least be able to give you something to help you sleep.
Im so sad at the way you seem to have been neglected
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Dani, you are so right, I’m very lucky to have an amazingly supportive wife, kept me sain too.
In all honesty I’m fearing the worst, but it’s multiplied by the feeling that I am being neglected and sidelined - this is probably ludicrous but the impression is just that.
I am left with the feeling of i’m a nuisance that should wait and wait and wait. It’s a soul destroying place to be.
Ah…. Who is your friend?
These are mine
Bracken and Ice.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
That is Saffy - she is one of a few , my wife and I look after dogs - we have an extremely close bond with Saffy.
We aren’t your normal dog walkers/sitters, we build such close bonds with the dogs, we treat them all as part of our family and they all get on fantastic together and when they stay for holidays etc
they share our bed.
