Hello there,

Good to hear you've made a strong recovery. And I'm pleased to see your scans weren't delayed by long. I guess the biopsy will tell them if it's HPV positive, as that will likely influence the treatment. 

And good idea to stay away from Doctor Google. It's normal to feel frightened. If it ever gets too much, anti-anxiety medication works miracles. I was living overseas, and they had a psychologist attached to the Cancer unit, so I used to have chats with him. He prescribed small doses of medication for around a month mainly to help me try and get up to 6 hours sleep a night. The second time around, I didn't need them, having developed more of an acceptance of my condition.

I can understand the frustration with not being able to run. I was a jogger before diagnosis 1. Became a runner in the 9 months between diagnoses, had to switch to cycling after over-doing the running, and now, I'm over-doing the cycling. 

This last 2 years, we've lived here in the UK, in areas of outstanding natural beauty, where exercising makes you feel especially alive - and after going through what we have all gone/are all going through, feeling alive is important!

The exercise helps us to stay positive, and the endorphins it releases work their magic on the soul.

I hope your treatment & recovery passes quickly, allowing you to get back to your own exercise regime.

Umit

Hi there. I have been reading this thread, and find much hope in doing so. My wife (who iam hoping joins this blog thingy) has been diagnosed with HPV + Tonsil which has spread to 2 of her Lymph nodes. She too has been accepted on the Pathos trial... I was just wondering how you have found it. Kind regards 

So, this is quite topical as I dropped out of the trial yesterday. The PATHOS study is an entirely reputable one exploring lower levels of intervention.  Basically if they can cure you with lesser levels of radio or without chemo then that's good because it minimises serious possible side effects. I would have preferred to stay in it for the higher level of monitoring and the sense that in some way I was helping future patients  

The reason I dropped from the study was that the study admin team repeatedly didn't answer my emails asking for allocation (in my case this only meant whether I got chemo on top of radio).  Effectively since my radical surgery I was left entirely in the dark about what was up ahead.  Of course I appreciate the pressures that everyone is under but for me,  the uncertainty was really getting to me and making me very anxious.  I already had provisonal appointments for chemo pre-assessment and my first chemo session booked in within a few days.  It made absolutely no sense to me that they hadn't allocated me to a branch so I knew what lay ahead.

When the trial coordinator finally got hold of me 3 days ago and told me I still hadn't yet been allocated and told me I would have to get in a car for a 2.5 hour round trip to the hospital where I'd already been twice that week "to get allocation rolling", that was the final straw.  I burst into tears and told her I wasn't in the right state to be setting off in the car to do something that could and should have been done weeks ago.

So there isn't clear evidence to inform my choice but I am going down chemo + radio + PEG.  I figure that I'd rather live with adverse consequences of over treatment than worry if I had a recurrence that chemo might have prevented it.

So now I know to expect,  I've got dates with first chemo/radio on the 29th at - apparently not allowed to specify name of hospital in the NW.

Although I was thoroughly *** off by the way in which the study participation was handled, since then I have received three phone calls to check to see if I'm okay and that I understand what's happening next, which has been nice.  It's a shame it took me throwing my toys out of the pram though!

Feel free to message me if you or your wife would like to chat.  It would be quite nice for me to share my thoughts and feelings with someone in a broadly-similar boat.  

Onwards and upwards!

Hi. Thank you for your reply, I feel your frustration with the trial team. My wife's treatment thus far has been exceptional starting with the GP, through to ENT and finally the Head & Neck team Consultant / Nurses.However we were not contacted until 2 days before Surgery (w/c 15th Nov) by the trial team, which meant there was no time for baseline tests, it certainly adds to the anxiety. It seem you are a couple of weeks ahead of my wife, she is really struggling with the pain after tonsil surgery and neck dissection this week. Not sure when we find out about what tranch she will be in, obviously hoping for reduced Radiation as the side effects seem tough. I hope you have found comfort in having a solid plan in place for your treatment. When my wife is feeling better she will join this group, I'm sure she will find it helpful over the coming months to compare notes. Best wishes. 

Please accept my friend request and I'll DM you my mobile if you or your wife would like to chat.
 

My post-op pain was really bad but three weeks on I'm not taking any pain meds and even eating crisps which was unimaginable a little while ago.

 James.

Friend request accepted. Thankyou James. 

Hello Fooman,

I hope you are coping well.