Hi again. All go now: dental x-ray today and CT scan on Monday. Seems to be a lot of confusion about what I have to drink or not drink for the scan. Latest is to go and have a blood test but don't have to pick up the gloop before Monday. Hmmmm. There's something disconcerting about the preparation, maybe because I haven't seen an actual doctor to talk about the process and diagnosis since the biopsy on 11 December. I'm very good at taking a core of genuinely motivated anxiety and making it bigger with vague probably unfounded worries and imaginings. Very hard to get understanding support from those who have not ridden the cancer roller coaster so I'm glad I can express myself here.

Hello. At least thing are moving along. I trust the CT scan appointment came with a printed sheet of what to expect, what to do etc.?? You know, getting another appointment to see the doc to get this moving would have delayed things happening. So don't worry. They know you and are doing what is best.
I hope someone will accompany you to the multidisciplinary meeting on Friday. Both for an extra pair of ears and to support and comfort you. There's always lunch out afterwards.
Tammy.

Maybe it's a CT scan with contrast (iV infusion) to better highlight areas. I can't have it due to my kidneys, so I always have a non contrast CT scan. Some places, give you some barium swallow flavored drink too, to highlight the gastrointestinal area, which I had for an abdominal CT, and with my full body PET/CT scans. They always have eating, drinking restrictions before so e scans, usually nothing after midnight, so is best to find out before since they can send you home, especially with PET/CT scans.

Good luck.

Thank you, people. The instructions for the CT came in the post at the 11th hour - no fluid to drink after all but a blood test was needed for kidneys.
My son is coming with me to the multidisciplinary panel ... a friend offered but I thought that it would be an educational experience for my son as well as family support for me. I remember finding it quite overwhelming before but you learn quite a lot and its reassuring that medical professionals work together in this manner. When I had ovarian cancer that didn't seem to happen and there was some conflict between different hospitals involved.

Good luck... I hope their solution is quick ans does what it's supposed to.. Hugs

Hello. Just want to say I'm thinking of you and that I hope all goes well tomorrow at the tumour board meeting. Such a daunting morning I have found the two times we have been.
What a good idea to take your Son. It will give him a much better understanding of what this all involves for you. I'm sure the experience will enable him to support you well through this.
Give our regards to Rajan if you are talking to him.
I will look for your next post with the treatment plan. Take care,
Tammy

Just got back from Auckland City where I had the tumour board meeting and pre-admission. Unfortunately it is going to be bigger than I expected: wide local excision of left buccal mucosa plus marginal mandibulectomy and left selective neck dissection. (Some "shiny" nodes showed up in CT scan.) I'll have some teeth removed and a forearm free flap to cover the area. I might not need a trache but it's a big possibility. Six to seven hour operation.

Six to eight weeks later they'll give me radiotherapy to prevent cancers reappearing (new primaries) on that side.

I'm disappointed, but have been very assertive about my post-surgical needs. I know I'm luckier than many oral cancer patients but I'm getting old now and I've always been a tempestuous patient ...

Maureenxxx

Hi Maureen, yes when we dont expect it they can shock us with the size of the surgery required to cure. I think what gets us through is that they still consider it curable. That's really great news.
So I see you have a month to eat up large. The time will go fast. I guess you will spend a few weeks in the hospital, then I hope your son will take you back to his house for a while until you are able to cope alone. I hope the surgeons gave you both a good explanation of the surgery and recovery and it's expectations. I'm sure your son will be there for you through this next phase. Thinking of you,
Tammy

I am so sorry that you are again going through surgery Maureen.
Hopefully the 4 week wait is not too stressful for you but you know how to keep busy.
Your nowhere near old and I am wondering what a tempestuous patient gets up to?
Keep us posted on how you are going.
Love and hugs,
Gabriele

Maureen, Im very sorry the surgery is more involved than originally suspected. Make sure you tell your docs to give you a possey muir valve trach if you need one so you can talk with it. Wishing you all the best with everything!