Another anxious newbie here

Hi there sorry to hear your feeling this way it's not a nice feeling I'm just waiting for some more test to be done but I'm feeling like I'm going crazy waiting for them there is a head and neck group on here with some really nice helpfull people have a look I put a post up on there and got such nice replys very helpfull take care joe

Oh sorry you did post on head and neck I'm only just learning my way round this chat room sorry joe 

Thanks, Joe83. I hope things become easier for you soon. I was lucky as regards diagnosis - my GP made it fairly clear it was cancer, and on my first hospital visit they confirmed that and found where the primary was. My period of uncertainty was waiting for the results of scans and further biopsies to establish what the treatment options were. So I have had less uncertainty to cope with than you.

Hi Forde Sorry you have had to join the club, no body wants to join. However it's not all bad, many on here have had the exact same as yourself, including myself. I am now 3 years after treatment and here to tell the tale. I had my tonsils out in August 2017, followed by 30 radiotherapy sessions and 5 chemo days, although I didn't have the affected  lymph nodes removed.  Having my tonsils removed wasn't as painful as I thought it would be, and they do supply you with plenty of pain killers. As for the radiotherapy and chemo, it's no walk in the park, but it is doable and many on this site have done it. I also had a RIG fitted which I'm really pleased I did, I was relient it for about 10 weeks. Although I didn't have the chioce of treatments how you have, I do think I would have gone for the same one as you have. Please ask any questions you have, someone will always come back to help, if they can. Once the treatment gets underway you will feel much better about things. All the very best to you, keep us updated.

Regards Ray.

Thanks, Ray, for that encouraging reply. I have been told they want to avoid tube feeding, so I suspect they prefer not to give me the option of RIG, but we will see.

Hi Forde

what you are experiencing is normal. A cancer diagnosis is a bombshell and there are lots of us here who have been through the same. 
There is a lot to process and you can’t be expected to take it in all at once so come back as and when you need tips, advice and support. 
I’m 21 months down the line from RT and living pretty well

As for writing a blog, for me it was not only cathartic but let my friends and relatives know what was happening without me having to continually update them. 
There is a link below but do take it with a pinch of salt. I’m a bit of a coward with a low pain threshold and my head wasn’t in a good place either. Yet here I am

Lastly might I suggest you clarify what your team mean about tube feeding. Hospitals are reluctant to fit PEGs but a lot of us here were given the option of a nasogastric tube which quite frankly was a life saver. You need lots of energy and protein to recover and heal from radiotherapy  and there is absolutely no need to struggle. 
Best of luck and keep us updated. 

Thank you so much, Dani. You may well be right about the feeding tube: the surgeon was focusing on what would happen immediately after my tonsil operation, not when I start radiotherapy.

Hi Forde and welcome to the forum.  You'll find lots of support and good advice here when you need it and in relation to other organisations you could enquire at your hospital as there are different support groups depending on where you live.

Your emotional response sounds perfectly normal but if you find you find you're really having difficulty coming to terms with things and feeling depressed then definitely have a chat to your liaison nurse to see what she can organise to help. 

From what you've said it sounds like you've got a pretty good idea of what you can do to help yourself.  I would just add that after your operations and during treatment make sure you keep on top of taking pain medication regularly and if you find it's not working for you mention it to your team and they will be able to prescribe something that might work better for you.  Also enquire whether you will be seen by a physiotherapist after your neck dissection so you can start doing gentle exercises for your neck and shoulder.

With regards starting a diary or blog I personally didn't feel it would be beneficial to me but we all have our own coping mechanisms.  If you feel it would help you could start one but there's nothing to say you have to continue it if you feel it's not for you. 

Please don't apologise for asking for advice.  We all willingly post on the forum and offer support as we know what it's like. 

Good luck with everything.

Linda x

Thanks, Linda. Good advice.. I was told  a physiotherapist would see me :-)

Hi Forde welcome to the club none of us want to be in. I didn’t have surgery wasn’t an option for me one if my lymph nodes was too close to spine. I didn’t have a peg but week 3 I had n g tube which was a lifesaver for me I am just over  2 years post treatment living my life. I did a blog details below I did it has it was the only thing I coujd control and made it easier to refer family and friends to it. off Dr Google stock to the forums we’ve been there read the book etc .Any questions just shout. 
Have you got the h p v status yet ? 
Keep in touch Hazel x