Oh dear. I have to have another surgery: 30 minutes, two nights in hospital. Most of my tissue is back from the lab, most with clear margins but one bit in cheek does not have good clearance so surgeon is lifting the flap, cutting a bit more out and sewing it back down again. Bone specimen is not back yet so when the extra cheek tissue and bone is added to mix they'll decide what the next treatment options are. Lymph nodes show no evidence of disease which is good but with this cancer I can't count on anything. Strange thing is, I feel so well even though I'm quite sore. I have some side effects from the painkillers but in myself I feel really well. If only it was as simple as that.

Alpaca - you are an experienced cancer warrior. You have victoriously battled this demon on and off now for 18 years. I'm sure you have had your ups and downs along the way, but in all instances you have come out the other end of the tunnel better off for the journey.

That will happen this time too. So, if you have a little nagging feeling in the back of your head about this procedure, I suppose that's okay. I expect you will think about it a little and then realize it will be what it will be and then move forward with the procedure, the healing that will occur afterwards and then the getting on with your life in a positive way.

In the meantime, you know your OCF family is watching out for you and thinking of you. Hang in there, you are strong, compared to what you've already endured, this is a walk in the park.

Tony

Good luck Alpaca with surgery, and the pathology.

Wishing you all the best. It sounds like your surgery team is right on top of it - so that is great. Praying for more clear pathology results.

I am happy you are feeling well. Whatever the next steps are, remember we are here with you.

Hugs

Donna

Alpaca you will get through this. So glad the margins were good, sucks about the second surgery but your dr seems quite proactive so that's terrific!!!! hugs

That is wonderful news on the clear lymph nodes.Wonderful
So, now you know you just have have a slightly larger excision on the one side. After what you have just been through this will be a walk in the park.
Make sure you have a script for plenty of pain meds on discharge this time. Too much is better than not enough.
You will get through this one.
I hope you have battened down the hatches for Cyclone Lusi. We have. I even cleared all the gutters.
Tammy

Thanks everyone. Unfortunately it wasn't quite so little. Everything seems to throw up more problems. My mouth wouldn't open very far so I had to be intubated through my nose while I was awake. This was after a nervous 5 hour wait in pre-op from 8.30 til 1.30. I had been nil by mouth since midnight. Then, when I woke from surgery I was in awful pain - about 9 - and it could not be quelled for hours. I started to cry for the first time since my diagnosis and couldn't stop. After I'd calmed down I discovered that they had put a gag in my mouth and been forced to extract my two front teeth. I have no friends in the place where I live because I am new there and spent most of my time caring for my husband. Going to all the new groups I've joined with scars is bad enough but without my front teeth ... Most of the bottom ones went in the last surgery. So I am going to have to rethink my social life.
I'm not allowed to drink but can wash out my somewhat bloody mouth. Just now a stitch came out. From last surgery or this one? Worry, worry. Because mine was a small procedure they seem to be giving me the nurses who are the worst communicators so I am not a happy bunny. Can read and write though so should be rteful for that.

Goodness, I didn't realise the surgery was to be so soon.
Those awake intubation are quite something aren't they. Usually the amnesiac medication they give you ensures no memory of the procedure. You are unlucky if you can . Prior to his Laryngectomy Kris too had all his intubations in the awake mode.
Sorry to hear about the teeth. It must have been necessary to be able to get in your mouth to do this surgery. I know you are worried about appearances and that it is trite for me say not to be. But don't worry about this now. I truly hope your pain is under control now. Just keep smiling at those Nurses and force them to be pleasant.
I am also a worrier so I know what that's like. Doesn't do us any good.
I will have to introduce you to my Mum sometime. They live in Red Beach too.
Hang in there,
Tammy

Can't add much more to what Tammy wrote but just want to let you know you are in my thoughts Maureen.
Glad to read mid week that the lymph nodes were clear and at that stage you were feeling pretty good.
Do you have the result from the bone specimen? Remember way back when that mine took a week at least!
Sorry to read about the teeth and also that you are not getting the best treatment from the nurses. Hope your son is still there to sort that out?
Sending lots of love and {{{hugs}}}. Just wish you were close by!!
Gabriele X

Thanks people. I'm hanging in there, just very uncomfortable in the mouth now. Sometimes I think discomfort is almost as bad as pain. When my pain went it went almost completely and is rarely more than 2 at this stage. My youngest son is still staying with me and doing a great job but has to go home to the UK on March 31. Eldest son is a great advocate too but there's not a lot they can do now. My wound hasn't fallen apart! I'm having lots of family visiting. Sometimes you can have great conversations in hospital. People seem to open up. Pity I'm not quite up to it but it has made the time pass so well. Lovely registrar told me they'd file an ACC claim for my teeth and that the RT shouldn't be too bad where I'll be having it. Might get my new toothy pegs well before the end of the year. (One of the cheerful and communicative nurses has just come in and reassured me a bit more about the stitch.)
So good to have this space to express myself. I hope my ramblings might resonate with others but it's just therapeutic to let it all out. Love to all, Maureen.

It's not fun when your nurses don't listen sadly it happens a lot. Sorry about your teeth. I was saying to someone a few weeks ago and I've said it here. Once treatment is over and you're up to it dental repair should not only be available it should be covered. If women can have their breasts replaced free of charge (here it's fully covered) then dental for something like this should also be. They yammer on about cosmetic this and that but boobs are cosmetic, and truth be told be rarely flash them unless on a beach, or to a partner, teeth are the first thing you see when you meet a person... They are very important for eating as well. It boggles my mind. Hopefully your pain will subside and you can definitely have something done about your teeth when the time comes - hugs girl

Hi, Maureen
I am glad to hear your sounding more like yourself, and the dental claim will be progressing soon. A colleague of mine and his family were vacationing in New Zealand a few years ago, and were in a catastrophic car crash - they were very well cared for by your health care system, and I hope you get some of their nurses!
When my mom had to have all her teeth out in preparation for dentures, she did adjust to the lack of front teeth before the dentures could be used. Your friends will 'edit out' the missing teeth very quickly and will be seeing YOU - not the gap. If others stare rudely, look them in the eye, say 'cancer therapy'. It will either shut them down (if they are not worth knowing) or you will uncover a new friend.
Maria

Maureen,

I'm so sorry to hear that the surgery was more involved than you expected. I'm glad you are recuperating but wish your hospital caregivers were a bit more understanding.

Because of the radiation damage to my lower jaw, I had my 4 front lower teeth removed. I had 2 removed in 12/2012 and then 2 more removed in 5/2013. I had to undergo more HBO before the additional teeth were removed in May 2013. I am in the process of having a permanent bridge made, but this process has been a long drawn out process because of the radiation damage.

While waiting for the bridge to be made (about 9 months), my dentist (a prosthodontist) made me some temporary teeth to fill the gap. I don't recall what the appliance was called, but it was thin silicone (or something like that) that went over my teeth similar to the dental trays or mouth guards I have, but much thinner. Almost like the Invisalign braces they use to straighten teeth instead of metal braces. He filled the area of the appliance where my teeth were missing with a material that resembled my natural teeth and from a distance they did look like my real teeth and I was able to eat some foods with this in.

I too was concerned about going out in public with missing teeth, and this was a great temporary solution.

Wishing you the best.

Hi, people. Phew, I just managed to survive a weekend in the hospital. Very slow, no decision makers around ...awful. I felt no pain in the weekend but just an extreme level of hard-to-describe discomfort. My nose was streaming, I was dribbling and the ng tube seemed to be irritating my throat. I thought I was going into a genuine depression too: tears, black thoughts. Finally I asked a sympathetic nurse to give me Oxynorm for the discomfort and do you know what? Within five minutes I felt normal again. At the same time my IV had to be replaced, a difficult job on my arms so the nurse called someone termed a cannulator. He was a Filipino guy who said said he felt blessed to be living in NZ and wanted to return the blessing to the people he dealt with. I haven't put it quite right but it was a beautiful point at just the right time.
Now I have seen the docs and have started drinking water and Fortisip. Strange to be taking food in with no front teeth but I'll go with any improvement that will get me home.

So Sorry to read your update. I wish there was something I could do to help you get past this difficult time.

I heard of others who have had their throats bother them with the NG tube. Please be your own best advocate and dont put yourself thru being in pain. Taking pain meds when you hurt is ok. Im glad you got some relief.

Keeping you in my thoughts. Wishing you all the very best! (((HUGS)))

Thanks, Christine. I am a lot better now. Should get NG out tonight or tomorrow. I've drunk 4 bottles of Fortisip and taken some meds orally. A great relief to be free of the drip stand.

Yeah!! there is always a silver lining. Sometimes we don't realize the mental impact that physical discomfort can have on us. You are already in a tentative state emotionally, it sometimes doesn't take much to hit that wall and then push you over the edge emotionally. That as you know is very common. And normalcy is always something we strive for - it proves to us that there is a reason for going on, and pushing forward. So hopefully with each improvement you will match that with hope. I know it's hard not to get down, but there is a light at the end of the tunnel. Hugs and thinking about you.

I'm home! I feel like me! The hospital is arranging for me to have temporary front teeth for my son's wedding on 29th of this month.

I didn't know such a thing was possible until I read it here. I told one of my sons who asked the registrar. Moreover, the hospital was very helpful after I had my big crying fit on Sunday. (What can one conclude from this?)

Cancer Society person coming tomorrow.

The person who makes enough noise gets attention... very very true. and you deserved a good cry. Yes temporary teeth are great... I think they are called flippers in the fashion world (used for those little toddle in tiara kids who have no front teeth...) I feel you should wear a tiara to the wedding.

So glad you are home and feeling better. hugs my dear.

So pleased to hear that you are feeling like You. . Yes, it has been my experience that sometimes one just has to have a meltdown to get action. .
I have been at beautiful Red Beach this morning. It was a glorious morning.
Tammy

Thanks everyone. I agree about the meltdown. The prosthodontist (spelling?) said they really liked me at the hospital, so my flowing tears must have touched their hearts.

To my surprise the teeth are not little temp things at all but a proper plate. I can wear it when I like until other measures can be taken. I had no idea they would contemplate a plate but the guy was very confident even though it was very difficult for him to prise my mouth open. I won't get it till the day before the wedding but he's giving me time in his private practice in Takapuna to fit it. He said it might or might not make it more difficult to talk but I want to be able to smile. Talking can take a back seat.

It's really great to know there are various options for missing teeth.

Love to all
Maureen

Through surgery, son's wedding -- so many reasons to smile, and now proper choppers to do it -- Maureen, you're coming through this brave and beautiful.

(((HUGS)))

Lynn

Wonderful news about the plate - and the wedding! Do you have your Mother of the Groom dress picked out? How exciting!
Maria

Thought I'd just add to this thread for now. Have not had all my results yet - bone and last surgery - but I was booked into radio-therapy planning today. Phew! The radiation oncologist is not sure I need radiation because my results so far are good (?) and he doubts it would have spread to the bone. He said they will discuss it at their Friday Tumour Board meeting. Meanwhile he thought I should go through the pre-planning as timetabled.

Then problems to solve: how to get an IV into my now-fragile arm veins and how to insert a device into my stiff jaw to push my tongue away from the rays. Both were solved after a lot of trial and error. I think the tongue plug is doable although it made my jaw sore and when the mask was pulled down tight for the CT it took a lot of determination not to ask them to stop. I chanted all the cities starting with different letters of the alphabet and other little distraction devices to make the time go.

So here I am ... washed up on an uncertain shore but feeling pretty quite okay right now.

You get through it hon...