Diagnosis yesterday.

No op. As far as I understand it the tumour is in the Piroform Fossa and the wall of my throat in the pharanyx so not really accessible.

I'm still awaiting CT scan results, dental X Ray and P16, no idea what that is! Today the copy of the letter I received that has gone to The Sussex Cancer is talking about " involvement of the left arytenoid and 'suggestion of reactive lymph nodes so I'm a bit mystified. I haven't reached Oncology yet, they are yet to have MDT Meeting when all results are in. It seems to be taking forever. My swallowing is worse and I have this awful dry mouth I am a tad concerned this tumour is getting bigger!

It's all very scarey......would appreciate any help!   

How did Monday go?????

Hi alfienangel it’s awful that it’s taking so long. P16 is a marker for Human Papilloma Virus which is a major cause of oropharyngeal cancer. 
The arytenoid is one of the cartilages of the larynx. 
Try not to worry. Your team needs to get all the info together to best treat you. They will do their very best. 
Do you actually have your next appointment? 

Hi Pauline - Monday was a long day but getting through it now one day at a time! I had Chemo most of the day then to RT. I was sent home with lots of anti-sickness meds and just took these as instructed. I must admit that I felt rubbish Tuesday and today. Feeling less nauseous tonight and managed to Pad Thai noodles for dinner so hoping the sickness has turned a corner. But as everyone says - one day at a time! I spoke to the dietician today and he has the same mantra - one day at a time and everyone is different.

The waiting is not great, but once your team has got the plan together you'll be starting treatment and ticking off the days! It's hard, but try not to worry.

Helen x

Evening Helen

So glad you got through it. Must have been a bit of a scary day!  Well done. Hope I can emulate your bravery!

The referral is with the Brighton H and N Specialist Cancer Unit. I'm hoping that by the time the appointment arrives they'll have everything they need. I was told that thecP16 was negative last week. Not sure what  that means either really.  So much to learn and understand. I was a Head of English until I retired in March, so I have to understand things!!!!!

How did you get on with the mask?  How long was the radiation treatment?  You're there daily for radiation?  

One day at a time! That's the way to approach this.  Whereabouts are you?  I'm in Eastbourne.

Take care of yourself, be thinking of you.

Pauline    x

No appointment but referral in. Hopefully they'll have everything by the time I get there!!!!

I'm trying not to worry but this lump in my throat it getting bigger, its more and more difficult to swallow.

Oh try not to worry, things will progress and you'll have a plan soon and will start ticking lots off your list. I had no idea what to expect, apart from stories on here, so I just went in positively expecting to meet a lovely team and that's what happened! 

I'm in north Wales and have to travel daily (Mon - Fri) for RT as they only have the machines at the cancer centre in Glan Clwyd hospital. I'm still pretty lucky with a drive that's around 45 mins (40 mins today yay!)

The mask does feel snug after chemo - since you'll have lots of fluid to flush the cisplatin out - so if you're mentally prepared for your first RT session immediately after chemo, understanding it will loosen in a couple of days ... then it's not so bad.

By today, my mask was fine. The team have lots of little adjustments they can make using mm-high plastic discs and rods that build up the mask (as they did to mine Mon/Tues/Weds) and they'll probably have to adjust it again by next Monday! No problem today though - I was in and out in around  15 mins Once you get the right fit after chemo it's about 10 mins under the machine, plus a couple of minutes for undressing etc.

Make sure you repeat your question about P16 - ask "is it HPV positive" when you next go in and make sure they explain it to you!

Good luck - Helen x

Hi Helen pleased the mask was better today. Hopefully your nausea is as well. First week done tomorrow that’s a big tick I will wave in your general direction Saturday as we’re off to Caernarfon for a week  

Hazel xx

Oh thanks Hazel - and yes, the nausea got a lot better by last night. I've had 3 large meals since! The car journey was much easier too without the motion sickness!

Have a lovely time in Caernarfon - a heatwave is expected.... So, plenty of water and SPF ha ha ha like I need to remind you!

Helen x

Hi Helen that’s  good news take the t days while you  can. Yes we’ve just packed strange not taking full waterproof s !!!! Bikes are ready walking boots cleaned so looking forward to it. We’re staying just outside Caernarfon YFelinheli on the Menai stayed there last year 

Factor 50 packed water never leaves my side. 
Hugs Hazel