Sinister Neck Lump and Mutant Tonsil

German law is on your side btw

we had team members in Germany and couple of them were sick for up to 6 months which is a challenge in public US IT company

there is absolutely no way to fire you under German law if you are sick so no worries here

WOW that is amazing news, thank you so much for that, my boss knows and is very supportive but she is in Switzerland so wasn't sure either, so we decided not to tell HR for the moment.

I think its a good idea to keep working for as long as possible, even if its just to try to maintain some normality, and maybe a bit of distraction.  I have said that once I'm well I will do the on call for a month to make up for everything, think that will go down well

You are right work helps not to fall apart

good luck with your appointment tomorrow!

So unfortunately as expected I don't get to rescind my membership to the SCC club, confirmed yesterday that its T2N1 at the moment, HPV+ thankfully, pet scan not done yet so don't know about mets, though they have said unlikely, fingers crossed.

They have forwarded my case to Oxford for the PATHOS study, so first step is surgery in a few weeks, then after randomisation of study I will find out the radio/chemo regimen.

So now that I know I feel a little more relaxed, had a little G&T last night and managed a whole 6 hours sleep, my weight has dropped to 50Kg so now going to try put on a few kgs before we get underway.  Started with a huge plate of sticky toffee pudding for dinner last night, will make a fry up for breakfast and bake some cakes today.

My biggest concern for treatment is my fluid levels, as I have a neurological condition, if I become dehydrated I fall unconscious by reading blogs it sounds like this could be a major issue, I have asked that they consider fitting a PEG from the beginning to keep on top of this, if anyone has any other ideas or advice would be greatly appreciated.

They have reassured me it is curable so the fight is on now

Pamela

Pamela

sorry to hear this but unfortunately the probability was high based on your symptoms 

at least it is t2 and hpv positive makes a big difference you can search for new HNC staging in US they see t2-3 hpv+ as t1 now

treatment is standard, but with your weight food is a challenge as well tube is a good choice from the very beginning as I lost 20+% of body weight by the end of therapy 

you should really try to gain as much as you can beforehand 

Hi Pamela. Welcome to our small and exclusive little club. Sorry you’ve found yourself here but as your consultant says it’s highly curable ok won’t lie The treatments pretty tough and recovery can be long but hey look at me. I was  61 pretty fit  had just cycled 1100 km ok was taken to a pretty low point but am back now 21 month post radiotherapy living my life pretty much as before with a few exemptions meat bring the biggest one but small price to pay. I managed to put spot 11 lb on due to eating things I would usually eat got quite psryislbto double chocolate magnums. Yes hydration is vital and I would hope that they do give you s peg on health grounds if nothing else. I had n g tube for 45 days in total from week 4. I still drink st least 3 litres of water a day. 

Anyway here if you need anything or just a rant 

onwards n upwards Hazel x

Morning

I’m so sorry you’ve found yourself in the club nobody ever wants to join!

My hubby finished his treatment for SCC tonsil cancer mid Jan 2020.

Please shout up if there is anything I can help you with.

Ken had a PEG tube fitted before he started treatment. He initially hated it but it became a lifesaver. Everything went in the tube including all medication and loads of water to remain hydrated.

Good luck.

Thanks Sharon

Im glad your husband finished his treatment before the lockdown and I hope he's doing well now.  I will definitely be asking for a PEG, doesn't sound like the most pleasant experience but if it keeps me conscious will be a lifesaver too.

Pamela

Feeling a little bit deflated now, had my MDT, which consisted of the ENT surgeon only, telling me that they now are not going to do surgery but go straight for chemoradiation.  Also the letter they sent out was different to what they told me at the time, Im now T2N2a instead of T2N1, tumour is apparently now 2.8cm instead of 2.1cm and with extra capsular spread of the lymph node. There were no further tests between diagnosis and MDT so a bit baffled. Had my PET scan today and apparently the oncologist, whoever he/she might be, don't have a name will be in contact when we have results.  Feeling a bit abandoned and scared of what new things the PET will show, Im sure I shouldn't be in this much pain when I haven't had any treatment. Haven't been told any next steps or timeframes and don't know if i will be able to see a dentist.  Sorry for the negative post

Pamela

Hi Pamela 

dont be down chemo radiation is the way to go one way to look at it is how my oncologist explained if after all treatment was done and I was one of the rare times  when further stuff needed doing surgery could be then done on lymph nodes. Plus going straight into treatment you won’t have to wait for any scarring to heal. Thr numbers it’s quite a delicate balance I went from t2n2 nm to the n2 being  several poorly differential ones including one near top of spine which ruled any surgery out straight away. Look at me know 21 month later living my life riding my bike. Don’t get down it’s a mere blip in your life there’s lots in here with no surgery . You will get more info soon there’s a protocol that they follow that's a tried n tested one albeit for us the patients not quick enough. I was 63 days from first referral to first day of treatment which is NHS guidelines 

hope this helps Hazel xx