Sorry for the really late reply. I've needed some time as it's been a bit of a whirlwind.
Chris; Positivity is a massive part of my personality. It's got me through so much, but I'm also realistic. Thank you for your compliment
Tammy; Thank you so much. My tumour is in the left lateral side of my tongue and 1.5cm over the midway point, plus 2 nodes. T4N2bM0.
So much has changed over this month. So my 1st team (who wanted to remove everything and had booked my surgery date without telling me, and were so brutal in their delivery of my cancer diagnoses and just so negative that I had massive anxiety before every appointment) they recommended I go for a 2nd opinion with a team from another area. 6 hour round trip, but off we went. Team 2 were amazing. Offered a partial glossectomy (up to 2/3's of my tongue), rads/chemo, reconstruction, TEMPORARY track & PEG. bTheir positivity and attitude was fantastic. I was ready to sign up there and then.
Team 2 iintroduced me to Dr B, from another Team. I was eligable for a clinical trial to have immunotherapy. It's already in phase 3 of the trial. I could choose between pre-surgery or post-surgery. Dr B wanted me to meet with Team 3 the following week.
So I did. I'm so glad I did. Team 3 are superb. They're from The Royal Marsden and they are rocking my world. They understand me far better than I could have imagined. They also recommend a partial glossectomy with a free flap, rads (possibly chemo), plus the usual therapies. As I wanted to see if I could get the pre-surgery immunotherapy (because it can reduce tumours before surgery leaving me with a little bit more of my own tongue to use) I decided to go with them. It felt so good telling Team 1 that I have chosen the trial as it meant that all of my treatment and care for the next 5 years will be with the Royal Marsden.
My larynx and epiglottis are clear of cancer, it hasn't spread any further than my tongue and 2 nodes on the left. (It is still 1.5cm over the mid point on my tongue, which is disappointing, but at least it's still contained)
Last Thursday was the radomisation day and the computer put my name against the pre-surgery arm of the trial. I had my 1st dose of pembrolizumab on Friday!!
I've got tongue strengthening exercises to do and I've been asked to keep eating as normally as possible. Okie dokie!
I've also been to the hospital dentist who is going to remove 4 teeth from my left (where the rads will happen) at the time of surgery so that I won't bite my new tongue and because cleaning them is difficult, oh and also because rads will ruin them.
The surgery doesn't scare me, but waking up not knowing what will be left of the old tongue does scare me.The start of the pembro treatment also is the countdown to when my surgery will be. However I will ask my specialist to talk me through his surgical plan as I need to visualise it to help ease my mind.
But for now I'm going enjoy that I've got 6 weeks of as normal eating and drinking as possible. Bring on the ice cream!