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I've had mouth cancer, caused by lichen planus, reoccurring for a year now. I have had three major ops this year and my consultant said I have been very unlucky. After ops and infections I have been left with some paralysis and pain. Just been told after a recent biopsy, that it has reoccurred, they can operate but there is only 30/40% chance of me living past five years. It would also further impair my speech eating and appearance, with a chance of permanent feeding tube. I'm 63 fit and have regained my strength and most of my weight, I'm still quite attractive and vain and I love eating and chatting. Chemo and radiotherapy may be a less effective option.

So, I have to make treatment decisions once I have all the information. My question is, how do I make such life affecting decision whilst my mind is in turmoil? And how do I cope with this catastrophic diagnosis? Are there stages of acceptance? At the moment I feel strangely calm, people will think I'm brave but I think I am just in denial.

Anyone else dealing with an unexpectedly shortened lifespan prognosis? How do you cope and make the best of what you've got left?

Sophie66 over 1 year ago in reply to Beesuit

Hi Dani

Who is the drama teacher in your family? Were they involved in the programme you have highlighted? If so very impressive. It never seems to leave the blood even with retirement.

Lyn

Sophie66

RadioactiveRaz over 1 year ago in reply to Sophie66

Hi Lyn we look forward to photos of the 2023 production. In case Dani doesn’t pop on it’s her daughter Cat who’s the drama teacher .

hugs H xx

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

Beesuit over 1 year ago in reply to Sophie66

Cat. The short haired one. My daughter. Adi her partner is the dancer.
I should have said. Not retired yet.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

Posi over 1 year ago in reply to Sophie66

Thanks again for sharing your experience which does mirror mine to some extent.

My first op last January was 14 hrs neck dissection and oesteomuscular free flap (using my hip bone in upper palate and losing upper right teeth. Several months later I got an infection and my right hand side of face became paralysed. Stint in hospital on antibiotics.

June cancer had moved to front of mouth and had mandible excision which involved stripping all the skin from left lower jaw and skin graft. Bone infection course of IV antibiotics.

Cancer back and September I had mandibular rim resection and dental extractions and integra. Leaving me with only two teeth that meet on left hand side.

Despite this I have managed to build up weight and can manage quite a bit of texture and have got back to socialising and exercising.

Last Thursday I found latest biopsy on left hand side at back of mouth is either cancerous or Verrucous Lichen Planus which they will treat as cancer and given this prognosis. options were discussed briefly but I will know more this Monday after MDT meeting.

I think perhaps it would be best for me to remain positive but at this stage I am finding it hard not to succumb to doom.

Husband being very supportive with decisions but he has had heart attack this year so not the best of health.

Reading your story at least made me feel someone else has been through this.

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