Hello I am just starting my journey and any advice will be appreciated

Morning Cal and welcome to our community. You seem to have taken most things in your stride and are as prepared as you can be 

My advice would be to trust your team, keep on top of pain as there is no need to be brave and suffer and finally stay off Google. 
There are lots of us who have survived and thrived. There is usually somebody about to share tips and a shoulder 
HPV positive throat cancer has an excellent prognosis. 
Best wishes 

PS

The treatment is painful and will change your life for a while but it is doable. 

Hi Cal,

Wow, what a whirlwind!  It's crazy how you can go from an ear ache to being in the position you are now.  To say it's a shock is quite the understatement isn't it!  I think you don't have a chance to process anything that is going on with you, just lurching from one medical appointment to the next.  Add to that the trying to be strong for everyone else and it's just too much 

A few coincidences here.  I am 52 and mum of 2 (11&15)  My visit to the doctors with swollen glands was about the same time ago.  Also being treated at Derby, I have found the 'service' so good there.  I had my tonsils and base of tongue removed a couple of weeks ago, they found my tumour in the base of the tongue.  Got to wait for a few weeks until I start my chemoradiation - might see you in the unit!  Have you spoken to the head and neck nurses in ENT?  I have seen Emily quite a bit and she is so supportive.  Good to talk to someone with no pressure to be positive, strong or coping with everything that is being thrown at you.  I hope you manage to talk to someone for support.

I'm afraid I can't give sage advice on what you are going through as I'm at the same stage.  I would say though that the folks on here are fabulous.  If you look back over posts there are some great tips, plus Hazel and MarkEl have a couple of really good blogs.  Come on here with any worries or concerns, this is not a space where you have to pretend to anyone  

1. Hi Cal, definitely stay away from Google.!!! This is achievable, you’ve just got to dig deep and keep your sense of humour.I seriously underestimated the effects of the treatment. I had treatment similar to what you’re about to experience and I thought 6 weeks of that then a few weeks rest and I’ll be as good as new....it wasn’t quite that straightforward, however there where people who were being treated as I was and they seemed perfectly fit and healthy and fingers crossed you may be just like those. I can’t really put a positive spin on things other than the treatment works and you’ve just got to go with the flow, trust what the medics tell you and the anti sickness stuff, it really works. I thought I’d be clever and stop taking it a few days after chemo...turns out I’m not as clever as I thought I was when I was blowing chunks all over the place. Your feeding tube should calm down soon, it can be uncomfortable but you get used to it and in my case it was a necessity, and used the feeding pump for a while....hope this helps a little..good luck

Hi CALilson and welcome.

Great that things are moving nice and quickly for you and yes, it's a lot to process in such a short time span.

As I'm sure you'll have deduced by reading various posts we can all react slightly differently to the treatment but generally share similar side effects to some degree or another so any questions just ask and as Dani says there is usually someone to offer tips.

Definitely keep on top of pain relief.  Any worries advise your team straight away so they can deal with it or put your mind at rest.  Have a chat to friends/family so you've got a support network in place should you and your family need it once you start your treatment.  And don't Google! 

Wishing you all the best.

Linda x 

Hi Cal.

 It’s a hell of a lot to process isn’t it. I was diagnosed just before Christmas and I cried and sobbed every day for quite a few weeks. My mental health was challenged in those early days.

I had 2 neck nodes where cancer cells were found but the primary was hiding and did not show up on any scans. I had a tonsillectomy and many biopsies and luckily it was hiding in my right tonsil. The op wasn’t until the end of Jan, my first was cancelled due to Covid which really stressed me at that time.

 I started my 6 weeks of chemo and radiotherapy on 8.3 and finished 16.4 so now in my first week post treatment.

 I am still learning and have found the support and advice from the group invaluable. I am doing ok and as Dani has said, this is doable, I just get through one day at a time and know that better days are ahead. 

There were 2 things that I took from the groups advice, 1 was stay on top of pain management and 2nd was lots of our meds cause constipation so stay on top of meds for that too.

 I wish you the very best of luck and will keep everything crossed that everything goes as smoothly as possible.

Sounds like you have a lovely supportive family to look after you.

Speak soon

Shell

Hi Cal 

eelcome to our community. I am almost 33 month post radiotherapy for tonsil cancer with several affected lymph nodes snd spread to soft palate.  H p v 16 + as well. Which is good as it  gives an excellent response to treatment. I had 35 radiotherapy  and 2 of planned 3 chemo I’m living my life to the max. Yes the treatment s brutal I was 61 snd s wimp I did it so can you. 
Best advise   keep  off google any questions as on get one of us will always help Water keep drinking as long as you can  

I found soft  toothbrushes Curaprox from Amazon valuable. I also had a humidifier for bedroom. Hospital gave me a nebuliser not everyone used them but I did. There’s more info on my blog below. With links to others. 
good luck 
Hazel x

Thank you for your message of support. 

Hello Juliess 

you sound like the lady I met in the waiting room a week or so ago, thank you for your support and I wish you all the success on your forward journey. 
take care 

Thank you for your support and I am getting myself mentally ready for what is thrown at me during the treatment. Thank you take care