Hi Elen

Well firstly to be positive, you have been diagnosed and will be treated by a brilliant NHS.

I was diagnosed with a T2 No  squamous cell carcinoma on the side of my tongue over 3 years ago. It was slightly larger than 2cms but not much. Yours is smaller so the treament may be different than mine.

It is normal to feel they way you do, but what is important to remember is that you will feel better.

Your treatment may not involve surgery, but if it does you will think that everything is going to be awful. But, your life will be saved, and you will get back to normal, albeit a slightly different normal.

My treatment involved surgery where they removed part of my tongue and repaired it with skin from my forearm. They removed 42 lymph nodes from my neck (which were negative for spread). The surgery was very intrusive for what was a small thing on my tongue. I know you are probably thinking "oh god no" reading this, but please don't. Whatever your treatment is, it will become part of your story and your life. But importantly you will enjoy life again, as I do.Let me tell you this: my surgery was extensive, it is slightly harder to eat and slightly harder to talk. However, and this is imprtant, no-one who knows me treats me any differently, and new people I meet have no idea what has happened, unless I tell them. Of course I think daily about what happened and how things changed, but it is the same for many things in life; bereavement; divorce, victim of violent crime; depression; unemployment.

What you think will not cope with, you will cope with. What you believe will ruin your life, will not. Whilst you may think you will never be happy again,you feel will feel happy again. When you look back in a year or 2 or 3 you will be calm. 

With Love and Best Wishes for your journey.

Michael

Hi Michael, thank you so much for replying. You have given me such a boost. The surgeon said my prognosis is good but over a sleepless night, I've convinced myself he was lying. I hope I can be as brave as you.

Elen.

Hi Michael, did you have a long stay in hospital and are you able to enjoy life? I see my surgeon on wednesday. The first one gave me a copy of the referral letter saying it is 1cm in diamerter and he wants it done soon because I am going on a cruise on 1st September. This would be nothing short of a miracle now I fear.

Elen.

Hi I a in the middle  of n,if treatment for cancer if the tonsil 

t2n2nm size 2 cm 2 lymoh nodes no spread. Unfortunate I think your cruise may have ti be postponed as yiu May need ct scan sand mri scans to check for spread plus the NHS is brill but not that UID . They have protocols to follow and trying to fit it all in and recover I think may be slim. Did you mention thins to consultant at the time ?

its possible that the 62 day from initial referral may apply so u may be able to go then have treatment. Talk to them .

i am 2 weeks into a 7 week course if radiotherapy daily Monday to Friday and have to travel an hour each way .plus have had 1 day chemo maybe 2 more before end  of August.

my consulate also  also uses the words cure they don’t lie so take comfort from that  

i have been through all the emotions to deep disparity to why me I don’t smoke or drink but the only one that’s works for me is positive mental attitude .

i have a blog up and running on www.radioactiveraz.wordpress.com it goes through the time span of diagnosis to starting treatment if any help.

dont playbdr google as my consultant said if he did he would diagnose himself dead in a minute flat. 

Cancer uk is good along with the Macmillan sites

good luck

hazel aka RadioactiveRaz 

Hi Hazel, i see surgeon on wednesday but i've convinced myself of the worst possible outcome.I'm going to look at your blog annd alsu that of vatch. If i can get through wednesday I'll be on my way. You seem to have come through such a lot. I have had cat scan and am having mri tomorrow. I have looked st stats on google and have scared myself silly. Are you in the uk? 

Thanks for talking to me, elen.

Hi Elen yes am a tough Yorkshire bird !,,,, 

a few tips totally do not dr google and tell your family not to stick to cancer U.K. and Macmillan or American cancer society.as for statistics like my consultant says they are 5 year old so applicable to 2008-2013 people just look at how much has changed in that 5 year period !,, so ignore them. The radiotherapy nowadays is so much less invasive as it was even 3/4 years ago .the VMAT radiotherapy that I am having bends round the tumour and daily they do a scan then zap away .all in all it takes less than 10 mins ,ok yiu have to put a robe in then the mask and they position you but once you get into it I chat awaybto the team all over and done with 15 mins tops. 

The mask more of that later.

tomorrows MRI the one tip I will give yiu do you have a favourite walk ? Or activity it tv programme ?

what u did was take myself mentally to Spain and rode my bike I included coffee stops loo breaks anything to distract from the racket. Plus breath in a controlled fashion I took deep breath in through nose held 3 seconds exhaled 7 seconds it really does help .

you are held tightly in your head region but honestly so far the m r i is the worst thing .

personalise everything give it a name my lymph node is Larry the lymoh the mask is Venezia. The drip is gormless 

this is ain’t going to beat me !!

imwill send you a friend request then we can chat privately?

try and enjoy today  do you have family near you ? Anyone at home? 

BUT KEEP AWAY FROM GOOGLE 

Hazel

tohether we can beat this 

Hi ive accepted friend request, what happens now?

Elen.

I was diagnosed with cancer of the tongue at the end of October 2017. I had the operation to remove it and reconstruction in December 2017 The operation is a long one, it takes all day  under general anaesthetic. I do admit that for the first couple of days after I came round I did feel quite sorry for myself.Due to the swelling I had to be fed with a tube for a few days. when you can swallow, ice cream is very soothing! I have to admit the experience was quite an ordeal however I was discharged from the hospital after just 10 days.   My speech sounded as though I had cerebral palsy and my energy levels meant that I was sleeping most of the day.  It takes time to recover fully.   As they were able to remove all the cancer  I did not need chemotherapy or radiotherapy.However Iwas fully convinced that I would have a permanent speech impediment but after about six months the swelling had reduced by about half and was still going down and with speech therapy I was able, with some effort to speak completely normally . I am now completely recovered, the scar on my neck has faded  and people can only see it when I point it out to them and they look closely the rest of the operation on my tongue was done through my mouth so there are no scars on my face  . My tongue still feels a little odd and my taste is slightly reduced as of course  there are no taste buds on the part of your tongue that has been reconstructed .   I am now completely back to normal and unless I stick my tongue out at someone no one can tell ! 

Hey [@Kevin49]‍ ,

It was interesting to read your post. I had a very similar operation, although no resontruction and a few complications.

I also found my speech has improved over time. Nearly five years since my operation, most of the time I am able to speak relatively normal. The odd word will catch me out, or some days my tongue will be a bit stiff, but I can't say it has impacted my life. I work in a job where I need to take calls some times and I can do it just like anyone else can. I may look at getting further speech therapy, as it isn't as good as it could be.

Although I lost the front left of my tongue, I can't say I have noticed any difference in taste, the one thing that remains to this day, is the feeling of my whole tongue not being there. It is a feeling that is slowly going away. Kind of like when you have a tooth out.

For the scar, I use bio oil. Mine is only noticeable in certain shades of light, but it is a conversation started if anything else these days haha. I have found very very slowly, some feeling is coming back around the next area, chin etc. Shaving is a bit tricky I must say!

I wish you all the best.

Hi, you don’t happen to still check this post do you as I’d love to know a bit more about your surgery and recovery etc. my dad has his surgery in 2 weeks for a 2cm tumour on his tongue and he will be having the skin graft etc too, just thought I’d see if you could tell me a bit more of what to expect and how your loved ones coped with the full day of surgery? Thanks