Hi everyone. I was pretty much a regular here in 2009/2010. Had the tongue flap/neck dissection etc and have kept healthy since then with most speech and eating functions only slightly problematic. At that stage I'd had three cancer diagnoses in my life and I'd survived all of them. By the end of last year I thought I was pretty damn smart, although I wasn't very happy. I was struggling to learn how to live alone after my husband's move to a dementia unit. Getting another cancer was the least of my worries so when I rolled up for a 6 monthly check up in Auckland I felt only the slightest little prickle of anxiety. But no, the surgeon took one look and exclaimed, "How long have you had that manky patch back there?" It's in my left cheek up high. I couldn't feel it although the left side of my mouth is where all the food washes up and it's often sore and irritated. This was 11 December and there was some hold up with the biopsy results. It transpired that they'd had to send the sample to a second lab to confirm it was cancer (I think). I'm notorious for being reluctant to follow up surgeons by cellphone and I'd also come down with gastro-enteritis so my son pestered the surgeon until Xmas Eve when the results came through: a small early cancer but I'll need THE surgery and a patch. My son knows little about cancer so I have no details of grade/type/surgery etc and will have to wait till tomorrow, 6 Jan when I will throw all caution to the winds and text the surgeon, ring the hospital clinic and so on.
If it's as small and early as the second hand report suggests it is, then I'm very lucky but oh how I hate to think of another surgery. I've had enough thoracotomies, laparotomies and tongue ops to last several life times!
Making it rather bizarre was the fact my son delivered the diagnosis to me through a closed ranch slider because my gastro-enteritis was so virulent that I decided to keep away from everyone till 48 hours after it passed. Xmas alone!
So I've had some weird cancer diagnosis delivery in the past but that capped the lot.
Hello,
I have just sent you a PM and then scrolled on down and saw this.
I am so sorry that you are facing this again. I'm sure the last year has been incredibly stressful for you and then this again.
I would definitely be following up tomorrow and also push to get into the next Friday tumour Board slot. Are you being treated at Auckland Hospital?
The good part is that this is early and small. I know the thought of surgery again is daunting, but it is what you have to do to be cancer free.
Kris's recurrence was a bolt out of the blue so I know how you are feeling.
I hope while you are waiting you do get quality time with your family and Grandbabies.
Tammy
Im so sorry you have been diagnosed with cancer again! If its caught early then it should be a simple surgery to remove the tumor and hopefully thats all you will have to go thru.
Wishing you all the very best!
Hoping things will not get too complicated. Sorry to hear you have to go through this again. Best wishes to you.
I just saw your post and am wondering if you have a reply now from either the surgeon, hospital or clinic my friend?
I am so sorry that after all you have been through that you have all this anxiety and no doubt had a rotten Christmas/New Year!
Gabriele
Just replied then lost it! I got through to the right person at Auckland Hospital who was organizing my appointments as we spoke. There seems to be some difficulty fitting me in for a scan but I should see the multi-disciplinary panel on 17 January. Phew! What a relief it is when a plan of action is put in motion.
And I was sent the pathology report. It's SCC in situ with probable invasion into the stroma, meaning that it has gone that one step further than pre-cancer but is still very early. Lots of dysplasia and inflammation. (Surgeon is away so I've had to interpret it myself.)
So, surgery and a patch will be needed but so good to have got through that Xmas/New Year hiatus when nothing can be resolved.
Love to all:)
Great news. Just getting that tumour board appointment is a relief.
The pathology sounds like it is indeed at an early stage. Hoping this will be a relatively easy fix.
Spend this coming week doing what you most enjoy to take your mind off this, - if you can. I see you enjoy photography so hope the weather will be kind.
Keeping you in my thoughts,
Tammy
I agree with Tammy and am glad to see that you have the pathology report showing early stage.
10 more days and you will have your meeting with the panel and no doubt a clearer game plan.
I also will look forward to seeing some great pictures of the wonderful place where you live
.
Gabriele
Hopefully they will move on it quickly and kick it in the gut!!!hugs! you can do this.
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!
You can get through this. While the surgery sounds daunting hopefully they are giving you a worse case scenario, and they will not have to be so invasive while inside.
hugs and best of luck. You'll get through it.
Thanks everyone. Not sure if Auckland has the talking trach ... will inquire.
Gabe, this tempestuous patient has twice managed to overdose on morphine using the self-administered pump, the tempestuous patient has hallucinations so real she thinks she's living in another world, she has a drug reaction that causes her to disconnect the trache from the humidifier, pull out her naso-gastric tube and run out of the hospital (at night down the fire escape stairs, in her gown) convinced the hospital is under military attack. She can't relax, can't sleep and has other patients in the 4-bed room complaining.
I spent a lot of time on Friday explaining my sensitivity to morphine and the bad back that causes extreme discomfort during the two weeks lying on my back on a hard bed. While the rigours of this sort of surgery might seem a worthy means to a curative end to most people, they are very real to me. I can be a tough and realistic cancer patient day to day, but I'm always a gibbering wreck after major surgery and always have been. When people say you just have to get through it, it's as if they're saying I have to spend two weeks in a dungeon being tortured but that's okay because it will help me survive in the long term.
Every time I say or think this, I feel guilty because I'm lucky to be sort of curable and a beneficiary of such sophisticated microsurgery. But it's how I feel ...
Anyway, strong-minded now. I'm going up Rangitoto Island, a volcano near Auckland Harbour today: Looks a bit hazy for good photos but I'll do my best.
Love to all
Maureen
Oh dear Maureen. Kris too has wild hallucinations with Morphine and won't have it.
There are however very good alternatives to Morphine. The best probably being Fentanyl which can also be delivered through a patient controlled pump. When you meet the Anaesthetist make sure he is aware as he will be prescribing the pain relief, not the surgeons.
Going to be a lovely day up North today. We are expecting 26 degrees. Thank goodness for air conditioned workplace.
Enjoy Rangitoto,
Tammy
That's great advice Tammy. I'll investigate the Fentanyl for sure. Alternatives were mentioned but in a vague manner:)
I'm just reading this now and see your last entry was a couple of weeks ago, Maureen. How are you doing?
Sending good vibes from a long way off!
Thanks, David. I'm doing pretty well. Surgery in two weeks today. Long time to wait but I seem to be making good use of the time. My youngest son lives in the UK and is coming down to NZ to "work from home" for six weeks. This ties in with a family wedding at the end of March and enables him to support me through the ordeal of surgery now that my husband is in care.
That has given me a huge boost; I feel quite spoilt:)
Last week my mouth got really sore, not just the lesion but the rest of it too. Haven't had thrush for years so didn't put two and two together. I was thinking dark thoughts about having to wait so long for surgery and wondering what the cancer cells were getting up to. Finally I looked in my mouth ... not a pretty sight ... went to the pharmacy and got some Nilstat drops. They seem to have worked; there's a bit of discomfort but the soreness has gone. Relief. I have an unexpected appointment with one of the surgeons on Friday ... just two more days to go ... so I'll get some answers and more info.
YEAH!!!! on the thrush... good luck on the appointment... fingers crossed.
Maureen,
Very sorry to hear that you are going through this again. It sounds like they found it early and have a good treatment plan. I certainly understand your concerns about the upcoming surgery and hospital stay after what you went through before.
I am glad to hear that your son is able to come for an extended visit! Please keep us posted. You are in my thought and prayers. HUGS!
Oh dear. Have just come back from trip to see one of the surgeons. The cancer is a bit bigger than I thought and goes from inside cheek to against gum, over gum to floor of mouth near or under tongue. My spacial intelligence isn't all that good but he drew me a picture.
They're going to have to do a bigger flap than last time and cut open my chin/lip to get access to the lesion. So I'll have a scar up the front of my chin. He said I could be in hospital for up to four weeks depending on how fast I heal.
This surgeon didn't pull any punches. He said the biopsy results were misleading because this is a full scale cancer, lumpy and looking cancerous. It ain't no carcinoma in situ as the biopsy results initially indicated. He didn't seem to be too concerned about the nodes but of course they're coming out anyway.
Funnily enough I took it well. Having a friend with me helped although she looked shattered afterwards, poor thing. I think I expected worse in a way ... It still sounds fixable ... The surgeon is a good communicator and very confidence-inspiring. It's just a pity that the Christmas hiatus period robbed me of a clearer run up to this point. I had the biopsy on December 11!
Im so sorry that this is more serious than originally suggested. It sounds like the surgery will be a major one with a large area being removed. This will most probably be a long surgery, several hours.
Ask if you will be getting a trach. If so ask specifically for a possey muir valve trach. It will make a big difference! That type makes where you will be able to talk easier if you are able to speak. You may have to go thru some speech therapy if the tongue is worked on. If you are able to have someone stay with you while you are in the hospital that would be a good plan. Im sure you will be sleeping alot and you may need someone to advocate for you, especially if you are not able to talk. You may want to have someone bring you a dry erase board.
I would be surprised if you were in the hospital more than 3 weeks. Since you have not had rads, you should heal much faster than most OC patients in this situation. Hopefully all goes smoothly and you can put this all behind you soon.
Best wishes with everything. Please post when you are able to or have someone let us know how you are making out.
Hi, Maureen,
I am so sorry that you have to go through this again. You have a great attitude about it though. I am sending you prayers, positive thoughts, and good vibes for a successful procedure. If you are not up to posting after your surgery, maybe your son could check in here and let us know how you are doing. Thinking of you.
Best,
Anita
This really sucks hon but you will get through it. Hugs!
Thanks, people. Yes, I think 4 weeks is an overestimate but I looked up the notes from last time. I was in hospital for one day short of three weeks. They had to keep debriding the flap from what I can remember. After that I healed beautifully - I guess I'll just have to be patient.
What I hate most about the trache is not the inability to talk as much as the heat and hum of the humidifier and the discomfort of the suctioning. But I'm prepared to face the dreaded beast head on this time.
Any advice on clothing? I'm not too keen on the bare-bottom, flapping gown look.
Doesnt the hospital have pants? Here in the US, they have pants similar to the lovely gowns. I always get the pants, but I also always have to ask for them. If the pants arent available, I would take a pair of cotton shorts or even some stretchy capri exercise type pants. As long as you are up and about without a catheter you should be allowed to wear some kind of pants.
Good luck!!!
If you can't get hold of the pants, ask for another gown -- wear one with the opening in the back and the other with the opening in the front. At our hospital, that's what they get all the patients to do.
No pants issued in Australia either.....like Gloria suggested I wore 2 gowns with my recent operation. The top one with the opening at the front!
Sending love and hugs for the surgery and wishing you a speedy recovery. Let us know how you are when you are up to it.
Gabriele X
Just ask for pyjama pants. Of course they have them . The men wear them. You should be able yo help yourself to them too from the linen pods which are scattered along the hallway. I always offer them to the women patients. So much more practical than a gaping gown.
Will be thinking of you this week. Be patient and kind to yourself.
Tammy.
Thank you for all the suggestions. I can't quite remember how to negotiate the thigh drain for pants nor how long it stays in. But with all this advice I should be well covered. My son might post a progress report on this thread otherwise I will do so as soon as I am able:)
Love to all
Maureen
Thinking of you Maureen, sending you a warm hello. Sophie
Hello,
I'm Sam, Maureen/alpaca's youngest son. Mum asked me to write here once her operation was complete to give you all here an update on her condition.
First of all I wanted to thank all her for the support offered to Maureen. I know it has really helped her, we really appreciate it a lot.
As far as we know so far, the operation was a success and there were no complications.
The operation started early yesterday morning, and was done by about 5pm. She was then moved to intensive care overnight, and was still there at midday today when I visited her. The nurse informed me that she would be moved back to the ENT ward in the next hour or so.
So far so good I think! She was already able to talk a little, but still very dopey due to the sedation and painkillers. They didn't require a trach in the end, which I know she will be very relieved about.
We still haven't got the full report from the surgeon; my older brother is the point of contact and should receive that.
I'll return here in a few days time when she is hopefully a bit more with the world and provide another update.
All the best,
Sam
Sam, thank you very much for posting your mothers update!!!! She has many friends here who have been concerned how she was doing.
Im so glad to hear she has done so well. Its very good news that she is already able to talk some and did not require a trach.
Please give tell her ChristineB says hello. Hoping she will have a painfree and speedy recovery.
Thanks, Sam, for updating us. Wishing Maureen a quick and smooth recovery.
Thank you for the update... hopefully the drs. report / pathology is good and she recovers quickly SO glad she doesn't have a trache.. frankly they SUCK!!! give her a group hug and tell her to feel better soon. HUGS to you too.
Thanks so much Sam. We are happy to hear that she made it through the surgery in good form, and we now pray for clear pathology. How wonderful that she has all of you to rely on for help.
Let us know when you know.
Hugs
Donna
Thank you so much for updating us on Maureen's surgery Sam.
Hopefully she is still doing well since you wrote. It is wonderful that she did not need the trach. as I remember back to 2006 when I hated that damned thing!
Please give her my love too. I have sent you a Personal Message (you should see a blinking envelope).
Cheers
Gabriele
Glad to hear all went well. I'm sure recovery will go just as well.
Give Mum our love and heaps of positive thoughts .
Looking forward to more good updates.
Tammy