Hi Lynn... The chocolate thing is very unfair! I'm the same just can't eat it! I would love to be told I will be ok too but they won't make promises... But I've decided in going to be... This is just a blip... So I feel ok at the moment...i have my moments... When I think about leaving Jon behind my heart breaks.. And my dogs I have to it out live them... My parents are so worried..I have lost my only brother already and they are frantic... My mum says her life would have been a waste if I die... So I've decided I can't it's unacceptable! And God yes I'm hungry...i want all the things I might not be able to have!!!

So eat well.. Be happy... Stay positive.. You are going to be ok! 

Love Paula..xx

There’s quite a few people on here that have recovered from it and I know one person who beat it so I’m hopeful, I was told this is life changing , that was specialists words but he never said life limiting so I’m kind of grabbing at the things he’s not saying! There so many people where I live that have beat breast cancer in its most aggressive form and one man has beat brain cancer so anything is possible! Let’s hope there’s truth in treatment working better on hpv triggered cancer , it’s apparently steadily becoming more common because of this virus xx

Lynne and paula

its great that you are both at similar stages of treatments and can take each other through this.

im sure John and I having been through and the many others that have also been through this on here, will guide you through every worrying and troublesome step.

and I guess now you just want to start.

paula in answer to you question, there was a delay between diagnosis and treatment for me as the lump in my neck lymph node was a secondary.....after many scans, tests and exploritories they never found the primary and that’s quite common.

I had a feeding tube fitted and can only talk from that, but I do have a great friend I made on here and have met since, he had nothing and ate all the way through .... this is rare but possible. I was also in treatment with someone who refused to have the peg .... but in that two week post treatment ( be mindful of that one ... but we will talk about that nearer the time) he went down hill and had to have a ng tube fitted .... I met him in one of our post treatment check ups ..... he really wished he had gone for the the feed tube pre treatment.

I’m not saying the tube is best, I’m only passing on information

THE TUBE

in had my tube fitted on the day of my first Tomotherapy treatment 7th july and I convinced the hospital to take it out 18th December. I hated the thing towards the end as it was a big physical reminder that I had cancer, but I have to be so grateful to it, as it kept me alive, so I will always hate it and hold it in high esteem at the same time

the tube is really easy to use and keep clean and yes paula if you want you can do alcohol, but I very much think you will want to.

i can’t dress the treatment up .... it’s hard .... but we get through it and there are many things you can do to make the trip an easier one

paula, you mentioned your weight, it’s not an issue on here and it will stand you in good stead

lynne I would suggest if not already read my note, try to put on a few pounds ... it will help

the treatment has a great survival rate, but there are things that can hinder this such as being a heavy drinker or smoker and if you were how you change post treatment. I must say that with all the people I have spoken to, I have not yet spoken to someone that has not recovered.

just giving you a bit of advice at the back end of this

once you finish treatment you will have a few check up meetings,but the 13 week stage post treatment I believe is key. You then carry on with your monthly meetings ... get used to having the camera down the nose ... every time .... the it’s the first year, second year and so on .... but I believe I it’s the 13 week and first year that are key.

i am now 3.5 years post treatment and have only gone to 6 month checks up ... which means I have three left until I reach the magical 5 years ... bit of a party planned for then I think.

i am sure you both have many question and even you john coming out the back of this will have some.

shout whenever you want ... ask whatever you want, I’m always on here chatting and helping whoever

paula I know you have but Lynne read my blog it’s a bit more descriptive and breaks the treatment down by each week and what happened to me in those weeks.....I try to keep it light

right off to watch my 15 year old play football

have a good day all

vatch

Hi there Paula and Lynne

My hubby was diagnosed with SCC tonsils with secondaries in his lymph nodes In December 2015. He had 30 fractions of VMAT radiotherapy and 5 cycles of Cistplatin chemotherapy plus a neck dissection. The treatment was tough and he had a RIG feeding tube inserted prior to commencement which really came into its own at the end of the course. He lost 3.5 stone mostly after the treatment had finnished but he worked everyday from his laptop even when he was hospitalised with uncontrollable vomiting and sepsis.

Just to say keep positive - he looked on it as an inconvenience that needed to be overcome. He never said why me or got angry he just took the Oncologists advice and we got through it. 

Its true a cancer diagnosis and the treatment  is life changing and he has been left with long term side effects but there is no alternative! 18 months later hes still in remission - eating and drinking fairly normally and back running 5 miles. 

There is light at the end of the tunnel even if it is difficult to see it at the moment. 

Wishing you so much luck and best wishes

Emma

I can’t thank you enough for your comforting words , I’m just very scared at the moment and still trying to take it all in. I’m so happy to hear of your husbands recovery, there’s lots of positive things on this forum about people coming out of treatment and being okay so I’m hoping I’ll be okay xx

Hi Lynne

Its perfectly normal to be scared- youre entering the unknown and its not a well known cancer unlike say breast so its hard to find someone whose been through it. Im a nurse and I’d never looked after anyone with tonsil scc or really even heared of it. It was a shock to us both and to be fair I was thinking more down the lymphoma lines. 

I wont say the treatments not hard because it is and we had our dark times but having to get up to go to the radiotherapy appointments for 6 weeks keep you going. We met some lovely people along the way and found most people kind and understanding. 

I would say dont be hard on yourself - take time to process whats going on - accept help and take what ever drugs they give you to stay painfree! Its no competition to see who can suffer the most - the aim is to get through it and come out the other sude ! 

Sending you so much love and best wishes as you start the johr ey and we’re here for you when you need to let off steam.

Emma

Hi Emma, glad to hear your hubby is doing well. How long after finishing treatment did he get the tube removed, also any food tips that worked for him. Thanks

cheers Vatch

all sinking in a bit but I am determined ..lol

intend to be a slmmer version of me and cancer free!

speak soon 

If they ever get around to starting this bloody treatment!

Paula

thank you newly married,

we love to hear succes stories and info about the journey is preparing us a little ...I think???..lol

I am glad that you are 18 months clear but sorry you had to take the journey...xx 

thank you for taking the time to come on here and share...xxxxx

paula..x