Finding this bit hard, 37 days after rads finished. So much to be thankful for like the return of energy and some taste but I'm struggling a bit in this vacuum where all sorts of things are going on in my mouth but I'm not seeing a doctor till 15 July. I can taste many things but not enjoy. I have two flaps now and no bottom teeth on one side as well as gaps elsewhere. I could eat a few soft foods before rads but now my mouth just feels incapable of even a slightly firm poached egg. While I'm lucky I can taste it, there's absolutely no pleasure in the taste. The only taste I can enjoy is vanilla/peach or (especially) chocolate in milk-shakes. Every day I try one non-formula food item and really it's hardly worth it because I can't flush the food debris out of my mouth without a syringe (haven't got a proper Waterpik).

The numbness, tightness and swelling around the affected area, which extends to my left lower lip, is driving me mad. It has always been a problem but now the nerves seem to be firing up more and the sensation is intrusive, hard to ignore even though or perhaps because the rest of my body feels absolutely normal. I feel uncomfortable with my dental plate in too which leaves me toothless at the front if someone comes to the door unless I can make a quick dash to the bathroom. I get relief from Oxynorm which doctors at the hospital are quite free with but I have only a few left and don't want to ask for more because of the addiction risk.

I don't know why I'm whingeing now because I have the speech/swallowing therapist tomorrow and the dental team the next day. I guess I'm preparing to flood them with questions.

Feels better having written all this:)

I'm sorry to hear of the troubles Alpaca. Hopefully the speech/swallow therapist, and dental team can offer more guidance, and ease of pain. As far as pain meds, I didn't want to ask my doctors for any like I had a drug problem or something lol, some who may so no, one did, or refer you to some other than themselves, but heck that, I'm in pain now. I'm going to see the pain management and palliative care doctor. As far as addiction, it's quite low when used to treat pain in cancer patients. Pain interferes with everything, healing, thinking, activity, mood, and we get programmed not to take them when their actually needed.

Good luck with everything.

Thank you, Paul. I hope you can get some relief from your pain soon. My discomfort isn't pain as such but responds to pain relief:) And yes, I was told by the RO that Oxycodone isn't addictive "if you need it". But I still come back to reluctance to take it for discomfort when I might need to save it for real pain in the future. Maybe I should explore the difference between uncomfortable sensations and what we perceive as pain but really I am complaining about minor issues and my worries are not serious at the mo:)

Sorry to hear you are feeling a bit down. I think with the food it comes down to perseverance, but you already know that.
I would mention all these concerns to the SLT. I'm sure she would get a Dr to look at you if you press it Maureen - especially for some additional pain meds. There really is no need to be in pain or uncomfortable.
Actually I'm sure the Dentists could prescribe too.
Hope you feel better today and that all goes well - especially with the travel across town.
Tammy

Best wishes for your visit with the speech/swallowing therapist today and dental team tomorrow.
If you like PM me your phone number and we can both practice our speech one day next week
Love and hugs...Gabriele

I have a premonition that you'll feel better after talking to the speechie and the dentist. After treatment I've noticed its easy to feel disconnected from medical help, and its very heartening to have someone professional look in your mouth and say "don't worry this is normal" and give you some tips on dealing with the next phase.

Chin up Kiwi, you'll get there.

Thanks, people. I got some good advice about trismus from the SLT but made a mistake about the dental appointment. I had read July for June! Not going to beat myself up about it ... I get lots of letters from the hospital re appointments and it was a good trip to the dental clinic via car and two buses, one I can duplicate on the right date. As for the other symptoms, they can be dealt with when I see a surgeon on 15 July. To my disappointment I won't be seeing the surgeon (I noticed when I looked at my letters more carefully) who did my mouth but the "Head Fellow" a guy on the brink of being a fully fledged consultant. He's good, he was the one who operated on my radial free forearm flap this time and did a very satisfactory job on it but it's not the same as seeing the guy who actually cut the cancer out and looked at all the results to see what the margins were.
I see the Head Fellow on 15 July and will just have to be very clear with my questions and see if I can ring the main surgeon if I feel the questions aren't answered.

Can't believe how much busier Auckland Head and Neck Department is since I had my first surgery there over four years ago.

I think I'm slowly getting better with some easing in the trismus and improvement in taste. Oh how I love my thick shakes now. I can put all sorts of fresh fruit in them now. I'm going to have to wean myself off the formula:)

Takes time.... You know this - things will move at a snails pace... But you will get there my dear. Hugs

Yippee that the thick shakes are enjoyable!! That is the day that I am eagerly awaiting. Your poor body has been so abused, and you are hardly whingeing... You are inspiration to the less stoic of us... Feel better soon...