Hi Sea bee, This is Hazel I am 15 month post radiotherapy for tonsil cancer ,ok not the same as yours but one word if as use please street clear of google ,You will scare yourself stupid there’s are. No regulations to tbings out on there and most I do is at least 5 years our of date . It’s. It a pleasant thing to happen and around Christmas even worse. All I can say isn’t have faith in our hospital team ,the cancer pathway is a well worn track . My dentist was gutted with my diagnosis we go every 3 months but mine was hidden inside my tonsil it onky came to light with a lump in my collar bone.you may be assigned a Macmillan nurse if yiur area uses them , please take advantage they can help yiu telling your daughter. It’s no use me saying don’t worry as I know inkyntoo we’ll just take strength that there’s a lot of us in here who have come through rough treatments and out the other side. Hopefully someone will pop along with yiur type of diagnosis . I didn’t have surgery I was radiotherapy and chemo 35 sessions if radiotherapy and 2 chemo . 

When you've got your full diagnosis I have a blog which details my experiences I a must niw 98% back to normal left with a lack of saliva and certain thing she I can’t eat .

good luck Hazel 

www.radioactiveraz.wordpress.com

Hi Hazel

Thank you so much for your reply. It sounds like you've had quite a time and I hope things are looking good for you. It's a difficult time of year when it's all cheer and togetherness around me. I'm trying to stay positive but it's hard as I know I've got the difficult job of telling my family and friends. I'm terrified what the future will bring. Its early days for me and still coming to terms with the enormity of it. I've looked for support groups and Macmillan are in my area and intend to go and see them. I've got an appt this week to see the maxillofacial team and I'll find our more then.

Yes the internet is scary and I'm trying not to look at it, only for helpful and supportive things. Thanks for the link to your blog, I'll have a look at it.

Take care x

Hi yes Macmillan do have a good support team ,I had a good team. Yes it’s scary but you  will get there once youve got  diagnosis your brain seems to settle down honestly xx

any questions just send me a message

Hazel x 

Hi Lynn positive mental attitude got me through it  , the cancer wasn’t going to define me or beat me. Yes I’ve had my dark moments especially before treatment and met mr lovely Dr and got into swing of ok this is what’s happenjng. They do miracles now with head and neck cancers compared to 20 years ago , ok it’s a blip is the way I look at it. When people stare at my radiation burn or when I cough I politely say I haven’t got a cold that you can catch it’s the after effects of cancer treatment in my mouth ,likewise when we are out eating in the early day s people would stare when’s i had my  nasal feeding tube in just rise above it. Like me Lyn don’t let it define you ,you can do it .

if you want to  chat privately send me a friend request .I am in West Yorkshire where are you ? 

Hazel x

Hi Hazel

I want to have a positive mental attitude and hope it comes in time. It's a difficult time of year, bad timing really and it's still very early for me. Not that I begrudge anyone having fun - it's how it should be as life goes on.

My daughter swims competitively and that is really demanding, early morning starts, after school and travelling up and down the country. So that's a worry for me how she'll take this and if it affects her swimming. That has been a big part of our lives and want her to continue.

Yes it would be lovely to chat and aim to be on that positive train albeit may take me some time.

I'm in County Durham, almost neighbours .

Lynn x

Hi Seabee12,

Just writing to offer all my sympathy. I'm not a medic, but it sounds to me as though you have had awful bad luck getting this, and been badly let down by the system. And your treatment plan is heavy compared to what many of us, including myself, have had to go through.  Removal of teeth and bones is something few of us have to suffer. 

I know that reconstruction is amazing nowadays. The results will look great. And you sound like a strong lady who is understandably extremely worried about what the future may bring, and is not scared to admit it. 

I wish you and your family the very best. Seabee12.

Harry

Hi Harry

Thank you so much for your kind thoughts and good wishes.

I've an appointment this Friday to see the maxillofacial team and I guess I'll find out more of what's to be done. It's going to be life changing whatever they do.

It's so scary having cancer and the facial changes I'm going to have and hope there is something they can do, even if it let's me eat and drink in the same way. I dont feel strong at the moment in fact I'm the opposite, which is so unlike me.

I'm hoping everything is good with you. I have read about your experience and I imagine it can't have been easy. It sounds as if you are being checked regularly and I hope you are fully recovered.

Best wishes Harry2

Lynn x

Hi Lynn good luck for Friday , take someone with you who can take notes as your brain will turn to mush. Write a list of questions yiu want answering,I used to Take 2 copies and give one to consultant so he could formulate his answers  it did help. Plus if they start talking medical terms ask them to slow down it’s your life they are talking about so  take  control.

let us know how you get on 

Hazel x

Hi Hazel

Thank you Hazel x

Yes I'll be taking my husband with me, we do have a few questions we have written down, but that's good advice to take 2 copies along. My brain is definitely mushy and finding it hard to take anything in at the moment.

Lynn xx