Recent Mouth Cancer Diagnosis

Additionally, could anyone give advice on any services that I can contact if I am 'just having a bad day'? I have been given lots of information but it all seems very overwhelming and trying to find the right support.

Don’t despair it is a dreadful time I had surgery in April to remove a tumour and tongue reconstruction have not had radiotherapy you will have good days and bad as I do do you have a specialist nurse they should be able to offer support and advice I hope you have family and friends to support you it is difficult but try to stay positive 

wishing you well Sybil

Hi daddypig 
what a rotten bedside manner your consultant has. 
Most oropharyngeal cancer spreads to neck lymph nodes and most oropharyngeal squamous cell carcinoma is classified aggressive. It is an aggressive cancer anyway for all of us who have been through this. 
The good news is that it is eminently treatable and curable so take a deep breath and don’t dwell on previous “vices” 

Its good that you’ve given up smoking 

Please do give the helpline a ring. The number is at the bottom of my post. 
There is another charity called The Swallows which has a 24 hour helpline answered by a real person. It’s run by Chris Curtis who is a throat cancer survivor himself. 
Do ring them when you’re down a need to chat to somebody 

https://theswallows.org.uk/
Stick around. There’s lots of help here. 

daddypig said:

I would be lovely to chat with some of you all.

Ask anything you want. No question is daft. There will be someone who can help. I was 67 when I started my radiotherapy for a T2 base of tongue tumour. That was over four years ago and I am more or less back to normal. The only side effect of note is a slightly dry mouth. 
The treatment is rubbish but it’s doable and it doesn’t last forever. 
Hugs

Hi. Sorry your consultants bedside manners leave a lot to be desired . I’m almost 5 years post radiotherapy for tonsil cancer by time treatments started I had 7 affected lymph nodes I couldn’t have surgery as one was too close to spinal cord I had chemo radiotherapy snd I’m still herd alive n kick h. Treatment is hard don’t be hard on yourself had HPV been  mentioned ? I wasn’t a smoker or drinker not all cancers are caused by smoking. Good you’ve stopped  stick with us on here we’re all here to help. Dani has given you some good contacts use thrm if you need  to. 
Hazel xx

Hi Daddypig. Sorry to hear you're going through such a tough time. I have been extremely blessed to have a very gentle Consultant over my case but know that they are all different. 

Your belief of what you are dealing with has changed, and your mood with it, however, your cancer didn't change, just the understanding around it, based on additional info. Mine was referred to as aggressive quite a few times, but all I heard was "curable". 

The info you received is useful to have, could have been delivered better, but your treatment plan hadn't changed - so you dig deep & find your positivity again. I joined Young Tongues FB page & used it and here to share, people sharing experiences, looking for help, sharing their strength, all got me through this journey to date. 

My journey through 6 weeks Rt with Chemo is under my profile,  All the best Tina 

Hello. I’m 15 months post treatment for tonsil & lymph node hpv 16-+
I had surgery followed by 6 weeks chemoradiation - 30x radio & 6x chemo I had a PEG fitted prior to treatment & used it from week 4 as I could no longer swallow more than sips of water

I went through a very dark patch & contacted Macmillan. I was offered 6 sessions of phone counselling & it was very helpful.

The whole process is extremely challenging but doable. In those lonely isolating moments when it all feels hopeless just hold on to the positive stories that so many of us recount. 
Ask anything, we all are here to help. 

Hi all, Sorry I have not got back sooner. And I'm unsure to add a 'new comment' on this thread so just posting this reply. 

Just wanted to say thankyou to you all for your comments and replies. It REALLY has helped and I feel more positive now than I did last weekend. One of the best things I have done on this journey is to reach out to Macmillan and all the lovely people within this community x.

So 2 weeks radiotherapy finished now and all was ok until around Wednesday when I have started to feel a little tired but more importantly, I have now lost all sense of taste.

After my initial surgery and giving up smoking I was being really positive, getting out more with my dog, swimming at the gym and enjoying food more once my surgery had healed. Now I have been told to stay out of the sun, I can't swim because of chlorine on my skin and now I cant enjoy food anymore. Just feels like everything is being taken away - so frustrating!

I contacted Macmillan and have my 1st counselling session on Wednesday.

Much love to you all. It really has helped. xx

Hi you’ve added in right place your own thread but ti be honest you can add anywhere by replying or starting a  new  thread.sadly start if week 3 it’s par for course. My ng tube was fitted end of week 3 it was a lifesaver for me. If you can  still swallow try to get  into your head food is fuel forget about any enjoyment for now. It does return but takes time. Well done on the no smoking. As for sun you will get back in to it plenty of factor 50 snd a big hat  for a good while I still use factor 5o on my neck and face.

My treatment was also July and August it was a warm summer we bought a gazebo so I could still sit out and enjoy our garden and read if I fancied. 
good luck with counselling quite a few on here have found it helped them. 
Hazel 

daddypig said:

I cant enjoy food anymore. Just feels like everything is being taken away -

But not forever. It will pass, I promise. 
It’s not until we lose these things that we realise how important they are. 
BUT these things will return. They may be changed and the road frustrating but we get there. 
Hang on in there