Hello all, new here! F37 in Scotland

RadioactiveRaz said:

A good Macmillan nurse is priceless in 6.5

Rowan21  heavens, yes. Look after them.

I keep bees and I have always supplied nurses and doctors with honey at every visit plus bubbles at Christmas. I had a concern a few weeks ago and my lovely CNS got me in to see maxfac seven days later.

As to nerves growing back.  Really they don't.  They may "rewire" leading to some strange sensations.  For example, I scratch my neck and it feels like I am scratching the top of my ear!  Most of the time the issue is bruising of the nerve where they move it to gain access.  The big one is called the Accessory Nerve and it controls the shoulder/arm movement.  That is why many of us have some post surgery issues in that department.  18 months post surgery and I was back to normal.  Other nerves that may get moved control the facial muscles but we don't often hear of those being a problem on here.

If the nerves have tumours wrapped around them that is clearly a different situation, but there is no suggestion at the moment that is where you are.

Rowan21 said:

My procedure would also be at the QEUH. Sorry for ignorant questions, do nerves grow back and that is why it gets better or is it just getting used to it? 

Nerves that are bruised recover over time 

Nerves that are cut don’t 

Mine has been really good as well, I should bring something fir the next appointment as it's Xmas time too. 

Thank you for the insight. 

Such a weird thing but I guess that's just life as an organic being. I think we don't expect more tumours at the moment, of course this can change. Thanks again..

Yeah the length of time that it takes for them to hopefully knit back together. 

I have pretty good function with my right arm, it’s just a little sore and I can’t lift as much weight as I used to. I’ll be getting physio etc once RT finishes and hopefully after a while I can get back into the swimming pool which should help. 

The ENT team at the QEUH are fantastic and have been able to help me out whenever I’ve needed help. For example, one weekend I had a meltdown as I couldn’t decide whether to have surgery or go down the CRT route. I was called first thing on the Monday by my CNS to come in and sit down and a chat with the consultants. Fears put to bed and a decision made. 

You are in good hands there and on this forum. Some people on here are great and sharing advice and pointers that have helped me through this process. 

keep the head up

Thank you Chris_2024. 

If I may ask, what you felt were questions that got you the most valuable responses? 

No problem. 

I went with a bunch of questions for the consultant but in truth they were mostly answered in their initial summary of what was happening. 

I always thought staging was like 0-4 but NHSGGC now does the TNM so I asked a bit about that to understand that more. 

I wanted to get info on how the surgeries and adjuvant therapy would affect my quality of life. this was explained in great detail. 

With RT I had read some difficult stories re weight loss so I asked about that and the possibility of getting a feeding tube. Again, it was all covered in depth. 

work out what you want to ask and if there’s anything you forget, your CNS should get the answer back for you. 

Chris_2024 said:

I always thought staging was like 0-4 but NHSGGC now does the TNM so I asked a bit about that to understand that more. 

 Rowan21 

Because HPV driven cancer behaves differently so it is down staged if you like 

There is a good explanation here 

https://www.cancerresearchuk.org/about-cancer/mouth-cancer/stages-types-grades/stages-oropharyngeal

Thank you the appointment is tomorrow so I will be asking things. I feel it won't make a huge difference practically but at least I would know.