Hey everyone,

I was told last week that I need 33 doses of radiotherapy due to a 1mm margin by whats left of my tongue. They want to ensure that I don't lose that little sliver of tongue and have to go through the whole surgery again. I am OK with that as I am in a good place right now.
I am also going to have chemo. 3 doses of cisplatin once every 3 weeks, 10 hours each session, but they will admit me for an overnight stay for each dose. Again I am happy with that.
My immunotherapy (pembrolizamub) will start at the same time, this will be once a week every 3 weeks for 12months.

All of this starts next week, where I'm being admitted on 16th Sept. I'll have immunotherapy first and then the cisplatin over night. Radiotherapy will start on the 17th at 9am.
With the way everything has planned, I will have chemo and rads done by Oct 31st. I am super happy with that as I'm 40 a week later, so I'm hoping I will be well enough to have the birtday gin and tonic I promised myself

I've still got numbness in my left thumb and part of my left hand, my ears, both sides of neck and parts of my chest. I still have some swelling in my jaw, neck and chest. I've no mucus, but I still over salivate, except when I'm laying down and thats when my mouth goes dry. I get a dry mouth at night, so I drink water to freshen my mouth up. I use biotene occasionally but I can't always get the correct amount (one night I put a bit too much in and my mouth went really sticky). I might have to try the mouthwash rather than the gel.

I'm now using my RIG/feeding tube very little. I have one medication that I put through it, and a protein drink as both taste awful, so I'm happy to bypass my mouth.

My speech is doing well. I still struggle on the phone so my husband is on stand-by should I have an issue.

I don't feel as vulnerable as I did before when I'm out of the house. It's only when I get really tired do I feel that vulnerability more. I had one incident with a man who got into my booked taxi. I had my walking stick as I was so tired and shaky after a full day in hospital. I politely said to him that he'd got into the wrong taxi by mistake and he started having a go at me telling me it was his. Once the taxi driver asked him if he was Mrs XXX the guy got out of the taxi and started to yell at me telling I need to learn some manners.
At this point my mouth had started to become foamy, I'm shaking as I'm getting into the taxi and I couldn't talk. The guy was still yelling at me as we drove away.
The old me would have given him what for, but I just couldn't talk to tell him to grow up and go away.

Ah well.

I'm starting to eat foods such as soup, custard, smothies, etc. I made a jacket potato and mashed the hell out of the flesh, adding lots of butter, yoghurt, cheese and chives. It took me 90 minutes and a big glass of water, but I did it and it was sooo good. I also made a guacomole by mashing a very ripe avocado with lime, yoghurt and garlic. That was great too.

I'm going through my recipe books for ideas to see what I can adapt for OC patients and I'm thinking of writing a recipe book. I see it that I've got quite a bit of time off work and when I'm having good days that'll be the time to concentrate on the book. Plus it'll put my chef skills into good use.

Hope you're all OK