It grieves me so much to write this.
Kris has had a reocurrence of his BOT tumour. There is no spread on CT - a local reocurrence at BOT only
We saw the Head and Neck team @ Auckland hospital today.
He is scheduled to have a total glossectomy/Laryngectomy and Trans flap with permanent tracheostomy.
I'm so scared. Can anyone help me with what to expect?
How as a caregiver/wife can I make this as easy as possible for Kris? What will life be like afterwards for him?
What "aids" for communication would be best?
I'm absolutely gutted.
Tammy

That's terrifying - I'm so sorry! That's a lot of surgery for a local recurrence! I guess they want to make absolutely sure they get it all. There are a couple of people here who've had total glossectomies - I'm sure they'll pop in to help. I Know you have a great team... However there was a fellow here training with my dr, last year - he learned a surgical technique that was pioneered by my dr that allows a real time view of the cancer as they're cutting. That way they are pretty certain that have got it all... Mind you they can't see on a cellular level, but if here's follow up chemo and rads it will take care of that most likely!!! His name Is dr gundulac (awesome young dr. And to be chosen to work and learn from my surgeon, he's got to be a top dr. Himself.) Anyway he left Toronto and is back in Australia - where? I have no clue but maybe he could help. Regardless good luck! And I'm saying prayers for you both.

Im so sorry your husband is facing a recurrence! There are a few others who have gone thru this. Cheek posts by Miss Kate who has had a total glossectomy. There is another site which can help called webwhisperers. I met a few people from that site when I was working on the TRUTH commercial. There have been some recent advances with doctors (I think in Italy) growing a new windpipe for a cancer patient. The article was on the OCF newsfeed. Best wishes with everything!

Tammy,

I'm so sorry for what you and your husband are experiencing. I wish I had some advice to offer, but just know that we are here for you when you need support. I hope that you find some answers in reaching out to the folks on this forum who have gone through total glossectomies.

Take good care,
Kerri

I am so sorry to hear this. We were facing this with Ken and it is so scary. I don't know if you have an iPad but we got one for Ken and bought an app ( kind if expensive around $200) but it was going to let him type by picking words if would speak for him. I think it was called proloquo2go.
I wish you strength and peace through this latest chapter.

Take care,Jill

Tammy

If you do a search for posts by PeteD, you will find informative threads regarding a total glossectomy, plus useful tools helping with communication/speech issues following those procedures.

Best wishes to you and Kris during this difficult time.

Karen

Tammy, I have felt the indescribable terror you are feeling...I'm so sorry. The most useful tool to have on hand directly following the surgery is a board that will allow him to write on using just his finger. We used the Boogie Board sold by Brookstone. We also used a squeak toy in the hospital so he could get my attention....that is what finally allowed me to rest. Once healed Jim was able to use an electro larynx although he preferred the Boogie Board and iPad-we used the Speak-It app. I would be happy to answer questions you have - I know had a ton of them myself!

Thankyou for the replies.
I'm slowly coming to terms with this and know I have to be strong for Kris -but boy is it hard.
I bought him an Ipad today so will look for the speak it apps and get him to master it all before surgery. I will look for the boogie board - probably online as don't know where to begin looking over here.
One day at a time again. I can't look too far ahead as it terrifies me.
Our lovely boys are back at uni and that's where I want them to be - to finish their degrees. I'm pained at the worry and distress they must be feeling too.
Thankyou all you lovely people,
Tammy

You have the strength to do this - you have no idea how glad I was it was me with the cancer, I knew I could handle it - emotionally it would have been far worse for it to have been a family member - I cannot imagine what your going through... But together you will get through it - I had three in university but two of them were living at home at the time. We always told them we were doing what ever we could to beat it, there is always a chance of recurrence, and they know this so we told hem to go on and live their lives. They did we kept them informed but it wasn't to forefront of our lives. It's good they are away that way you can focus on the healing process etc... Good luck an many blessings to you. Also don't stop looking to the future - but do live for the now, remember even without cancer - none of us is guaranteed a tomorrow...hugs

Tammy, my thoughts are with you and Kris. Even for me it's hard to imagine what you're going through. I believe Dr. I. Brook, who posts here and is an MD who had a laryngectomy if memory serves, could be a good resource. Believe that's his screen name (with or without spaces).

All the best to you both from up here.

I forgot to mention a key communication method Jim used...texting. He didn't text until after his surgery but quickly became as good as a teenager. That allowed him to keep in touch with our kids who were in college too. Hang in there, it really is manageable. Even though he didnt speak I feel like our communication was strong after his surgery. I'm sure you'll find it to be the same.

Dear Tammy,
These all sound like great suggestions and I'm sure you'll find out which ones work best for the both of you.

As Cheryl previously said and I have expressed the same sentiment...if one of us in our family had to have cancer, I'm glad it was me, because I didn't think I would ever be strong enough to be a caregiver. I have always been an emotional weakling, in my opinion. I remember saying that to my counselor...that I didn't think I could manage things well if the roles were reversed and she said, "You'd surprise yourself.". I think she was right, because when I think back to some of the most challenging times in my life, and there have been quite a few, I did handle things, but with lots of tears. I cry at the drop of a hat, but I also am easily amused!

I guess I shouldn't equate being outwardly emotional with being weak, just one who "wears her heart on her sleeve". You can and will do this. You will stick by and put one foot in front of the other. So will your husband. It will most likely be the most difficult thing either of you will have to experience, but eventually, you will adapt to what has become a "new normal". I realize this is all easier said than done...isn't that how life goes?!

Again, I wish for you and your husband to find the strength to face each day and new challenge. Peace to you, both.

xoxo,
Kerri

Thank you all for the encouragement. Kris is having his surgery Thursday 8th. We are having it done in the private system as I am not prepared to wait until end of April for a slot in the free public system. We do have some insurance so will manage with family's help. Kris will transfer back to the public system after 48 hours for the specialist services e.g. Swallowing/ speech therapy that he will need. This is huge salvage surgery, very scary. But, I do know we will get through this. I can't look to far ahead. Will always now be terrified for another reoccurence.
Are there any long term survivors of this surgery out there.
Tammy

Tammy and Kris:

I marked my calendar to say a special pray for Kris on the 8th. I hope that will end his recurrences and he has a speedy recovery. Let us know how he does. You are not alone in worrying about recurrences, but hopefully that will never happen again.
julieann

Hi Tammy- Will be praying for the best possible outcome for your Kris. Please feel free to send me a message if you'd like.

KATE

Hi Tammy there are survivors out there - I'm sure one will be along... Isn't Mr Ebert one? Hugs - sorry you are both going hough this. will definitely say a prayer on the 8th - and so glad you are having h surgery on your own terms, waiting until April would be a lot to ask of anyone!

Hi All,
Right at this moment kris is 6 hours into his mammoth surgery.
We had a long discussion with the 2 surgeons who are performing the surgery yesterday. They were very positive and stressed that his CT shows the tumor to be localized at the BOT again with no spread in either the head/ neck or to the lungs. They reiterated that they would not offer us this surgery if they thought he would not be a long term survivor. The surgery is so extensive as they need to ensure that all traces of the tumor are gone and that they have very clear margins.
They were very confident that kris will eat again and he will definitely speak again. Speech will take about 12 months as they do not insert the speaking valve until 6 months post surgery. They say he will be able to hold phone conversations. I'm so thrilled. Life won't be so bad after all. Yes, this is definitely life changing, but we will get there.
May this be the last time we ever have to front up to this dreadful disease.
Thank you , thank you for all the advice and encouragement,
Tammy

Tammy, Im wishing you and Kris all the very best with this surgery! I know you must be on pins and needles the whole time. Its a long road but it will be well worth it in the end. It sounds like Kris has excellent doctors caring for him with such a great prognosis.

Please keep us posted as to the progress. Best wishes!!!!

Keeping you both in my thoughts and prayers today and every day going forward through this journey! Please keep us posted.

Jill

Prayers everything goes well for you and kris! Hugs and good thought coming your way.

Hello,
Kris is doing great. He is off the ventilator and breathing by himself.
His face looks normal just slighty swollen. The graft in his mouth , well, itis healthy and continues to have a good blood supply. Guess that will take a week or two to settle and look less swollen.
The surgeon told me that they sent tissue samples from where his original tumor was and there is no sign of cancer, all margins are clear. So the good news is that this was a small local reoccurrence. Guess we are still waiting for the nodes to be looked at - they did bilateral. Neck dissection too.
I am feeling much more positive.
Thought I do realize we are still at the beginning of this phase of treatment.
Love to you all,
Tammy

Awesome so glad things are getting better! Take care!

Good to hear he's doing well. You are doing great too!! Thanks for keeping in touch with us!!
Kathy

Hi,
Kris has been back to the operating room tonight. The surgeons suspected a number of leaks from his suture sites in his throat. There were a few leaks but all are sorted now - I hope.
The surgeon did mention that at the time of surgery they did remark on how damaged all his tissues were from last years radiation and chemo - again the gift that keeps on giving.
So, hope it will be at least 2 steps forward now before we take another back.
I' let you all know.
Cheers,
Tammy

Oh no. Hopefully they got it worked out.
How long do you think you'll be there?