Hello all.
Completed carbon-ion therapy late April for my 4th recurrence.
While waiting for the MRI follow up I felt something was not right and advanced the whole thing.
They found growths in back of my throat, in a bone in my ear, many in my neck.
Waiting biopsy to confirm but that's a formality in my opinion.
The pain is now ramping up. I'm already on oxycodon and supplementing it with paracetamol with codeine, ibuprofen, diclofenac and anything I can get my hands on basically. Rotating them.
I will see the professor (surgeon) on Tuesday to see what can be done.
My question is has this happened to you? It usually popped up in one place and was dealt with with surgery and the last with re-irradiation as it was inoperable.
This time it's everywhere in my head and neck. Suddenly and growing fast. My ENT said she never saw something grow so fast. Only one, back of throat, grew 5mm in 6 days. I wonder if this is the final countdown. It feels like it. No idea where the primary is
I don't know actually what I'm asking. It's just moving sooo fast and of course the doctors, with one exception, are moving sooo slow.
I guess I'm wondering why if I broke my leg, they'd fix it same day. With this I know they will discuss with tumour board, make plans for whatever treatment and I will probably start treatment in 4-6 weeks. This is what my experience has been so far.
In light of the fact that I can literally see them growing daily do you think they might do things a bit quicker? It's beginning to close my throat, I can't eat, drinking anything is massively painful. I am losing my will, I'm falling asleep randomly and feel constantly tired.
Anyone ever been fast-tracked? I'm always told that I'm not the only one with cancer and they are busy. I feel like I am dying rapidly. It would sound dramatic but this isn't my first time. It's the 5th and by far the most painful and fast and it's in many places.
Haha. CNS. They just demanded 6 months of sick pay back because I asked for disability pension.
Imagine getting a 30,000 euro bill just like that when your world is collapsing around your ears.
I don't need that kind of help 
The only one who is pushing is my ENT doctor. She's an absolute angel who writes personal emails and has none of the God complex some docs have. All of that while she deals with her job, 1 baby and 2 young kids. I'm super lucky and grateful she came into my life.
Ahh. A much better CNS in that case
Wow this morning my whole cheek is swollen. That can't be cancer surely? Must be a reaction ? Holy hell
Thanks for the update Larry. It can’t have been easy to post it and actually see your thoughts on a screen in front of you. Pembro can work wonders and I hope it does for you. My thoughts are with you xxx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
