Hi;

I always say 'Till/to the other side" and the journey is part way done.

I've had my surgery and they didn't have to remove a lot of my tongue - just a little bit, more at the base. But they did remove a lot from the floor of my mouth, all my teeth to gain access and approx 3 inches / 7 centimeters of my right jaw that was reconstructed courtesy of my left leg. All of my operation sites are stable and all of their perimeter biopsies were negative, which is great. 9+4 lymph nodes. No metastasis. That said, the tumour was large and radiation/chemo come next. I was admitted to hospital on Aug 29 and was home on Sept 10.

While most of the swelling has gone down, speech is an issue (am practicing) and am using the Sloan-Kettering Trismus handbook for exercises (free download) - my speech pathologist recommended. I find it most annoying that I can't manipulate food in my mouth. I think the removal of my teeth has a lot to do with that - and have been told that they won't look at their replacement until the spring (March/April).

Am eating the usual in this position - Ensure, Soups, Mott's Fruitsations, Yogurt, Puddings, and I make my own soups/stews with very finely chopped ingredients (if something gets stuck, I won't choke, just be annoyed). Helps though - yesterday I roasted a chicken, chilled overnight so chopped easily, but also prepared all the finely chopped veggies by hand. Little tiny squares help make you feel human again. Am going to purchase a steak so I can (literally) suck on it, probably won't be able to swallow. The blender is perfect for assorted fruit juices.

Chemo and radiation to start on the 21st or 28th. Am worried about the loss of saliva, but will take it over loss of life. Is Biotene that good or are there others people would recommend? I should be done the chemo/radiation in the first week(ish) of December. I guess recovery from there and probably a followup PET scan...

As far as the surgery - I can walk on the leg that donated the bone (gingerly, inside my house, no supports); cane or walker and aircast otherwise. Big scar from my lip to my adam's apple and then side to side (ear to ear). Working on exercising my jaw several times a day. My jaw's the only area where I still experience pain - constant ache, but am not using any medication. Going for progressively longer walks every day and all my swelling has gone down. Some annoying numbness near the tip of my tongue, but all taste is back and maybe a bit of nerve damage on the back of my left leg to foot (near the ankle and donor site).

Oh, and really annoying - Ice Cream gives me lockjaw. Ack !!! I stocked a freezer with Haagen-Dazs <sigh>. Also on the annoyed list - they delivered me a wheelchair a week ago, a week after I no longer needed it. Probably take a year for them to pick it up - but the help assistance here has been great.

Hi again everyone (from Toronto, Canada) - the tunnel isn't so long any more.

Drew.
Toronto.

Hi Drew,

So glad to read that you are feeling so positive about the “ordeal.” I have found the help from CCAC amazing, too. We had pumps (for hydration) delivered, all kinds of gauze pads, gloves, whatever, delivered. The only downside was that the delivery service wasn’t communicating well with the CCAC office. But I thought I couldn’t complain since I got it all free and was given stuff that I didn’t even know I needed. My husband had weekly visits from a nurse, even during the worst ice storm. Then he also got a PSW who came to bathe him when he was in palliative care. I kept telling people that I would never complain about the high taxes again.

Good luck with the radiation and chemo.

Hi Drew!

To answer your question about Biotene... NO!!!!.. its NOT what it claims to be!!! Several years ago it was reformulated. All the beneficial ingredients OC patients need were eliminated. OCF has a great many posts to read about Biotene changes and what works best (well over 200!). Use the Search function near the top right of any page. Type the word Biotene in the search box and hit Go. The best posts for info are the Biotene threads started by Brian Hill (OCF's founder). They give in depth info about the changes to Biotene and what newer products are most like the original Biotene. Its a shame it was changed as the original had been an excellent product before it was messed with. I was a big fan of Biotene, using it for several years before the changes. Im pretty sure Brian mentions what specific ingredients are the ones OC patients need so that cold help you when looking for an alternative.

Hi;

Yes, the CCAC (now LHIN) has been great. I met with my surgeon today and while he wanted to cancel the nurse (daily home visit) altogether, he's changed it to once a week so I can continue to receive supplies.

My surgeon was concerned with the incision on my leg (where they removed bone for the jaw) and (in his words) - you're 80% healed, but that last 20% can be the longest to get through. He wants to make sure I can keep dressing the wound for the entire time.

All the best,

Drew.

Hi there;

Thanks so much for the heads up on Biotene. I've a week before I meet with the chemo doctor (radiation planning and a CT tomorrow), so I will look up those posts later this week.

I hate it when companies change what works.

Thanks again,

Drew.

Hmm -

Read quite a bit of the threads on Biotene - how does Aquoral compare? https://www.aquoral.com/

I also see Periosciences AO and Salivea is still there. I'd have to order Salivea from the US (which is fine) - I find it humorous that amazon.ca can't keep in line with Amazon.com

Am also noting that aquoral is prescription only.

Just dabbling my toes in the pool (so to speak) as I figure this out.

Drew.