You are a strong compassionate woman and a role model .

Cindy,
Thank you for sharing. It is an amazing moment you shared. It's inspirational. As you are.
Can't wait to catch up soon!
Xx
Ev

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Cindy ..  I hope all the best for you in your battle against the cancer.
It looks like such a difficult thing to endure. I know my family members
who have gone through it and how hard it is. I appreciate seeing the
updates on what is happening for you. You give us all strength
Kath

Dear wonderful Cindy... I find myself greatly encouraged by your journey and its many victories... I sense my life influenced positively... realizing how big I can make the "small stuff." You help me in my journey to learn to "seize the day." Thank you for sharing your life with us all... you not only share your life here personally, but spend countless hours with others in fostering this safe environment for all of us to communicate and grow. Buckets and buckets of "Thanks you"s with some very gentle hugs for all that! Positive wishes and vibes and prayers— take your pick of any or all!   — sent in your direction each day.

I've been sitting on the 6 month PET scan results for a week while the Head & Neck Multi-disciplinary team made comment. Unfortunately instead of the PET uptake decreasing from the 3 month scan it increased.

Optimism suggests that I received so much radiation to the target area that there is ongoing inflammation.

The alternative view is that the cancer has returned, in which case it is even more aggressive than we all thought (well I thought).

So I'm going in for more biopsies as that is the only way to make a decision.

If it is cancer then the only treatment alternative I now have is a total laryngectomy.

The next few weeks are going to be interesting.

Cindy

Any optimism you can rustle up and maintain is just freaking awesome!  And then there is that ancient curse; May you live in interesting times.  Might be nice if those damnable mutant cells could learn to behave!

I know no words, emoticons or jokes can convey the depth of respect I feel for you or alleviate your concern.  Thank you for being strong and being here with dignity and self determination.

hoping for the best

Fingers crossed!

Pulling for you!

Best wishes

Sending love,  keep keeping strong.  X

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Nothing I can add really - I just hope the outcome is as good as it can be.

Sorry you have to go through this; stay strong Cindy!

   My heart and prayers go out to you Cindy, I wonder at your strength to be able to share these trying episodes with us. For some it's easy to fall into the self pity upon getting such news. But not you, you share. And no matter what the results may be, you'll fight. In the end that is all us cancer victims can do. We fight or we die.

  Fight on Cindy, fight on.

  Hugs and prayers,
   Jeanette

Good luck & best wishes, hope it goes well for you

I don't write in this thread often because I just don't feel adequate to express myself in a way that it conveys my feelings and how much I look up to you and the way you are handling the difficulties in your life while still helping out others. You are still in my thoughts every day and I wish all the best and hope for less interesting times with improvements in your health.

Dear Cindy,

I want you to know that you have all my thoughts and prayers.  I wish I had more to offer.  Stay strong, and continue to fight.  You are such a wonderful person, so please know that you are thought of very highly.

<3
-Sarah

Quote from: Cindy on February 23, 2017, 12:51:19 AM
I've been sitting on the 6 month PET scan results for a week while the Head & Neck Multi-disciplinary team made comment. Unfortunately instead of the PET uptake decreasing from the 3 month scan it increased.

Optimism suggests that I received so much radiation to the target area that there is ongoing inflammation.

The alternative view is that the cancer has returned, in which case it is even more aggressive than we all thought (well I thought).

So I'm going in for more biopsies as that is the only way to make a decision.

If it is cancer then the only treatment alternative I now have is a total laryngectomy.

The next few weeks are going to be interesting.

Cindy

Hi Cindy, I'm thinking about you, literally sending you positive thoughts. Lots of love, the right hug, and light positive besos on each cheek, all sending peaceful well-wishes to you, Ashley XXOO

Hi Cindy, my most positive thoughts are with you. Luv Sue.


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Thank you for everyone for your lovely comments. I write this blog to keep me sane but to also to be open as the Admin of the Forum. It is your Forum, I'm just the Admin and I hope you have faith in me and my incredible staff.

My original PET scans came out with a reading of close to 12 SUV, the scale for PET scan is hard to follow and if anyone can explain them please do so. My post therapy scan was 4, my 6 month was 8. I see the problem

After a meeting on Monday with my principle medic, a lovely man, he suggested there where 3 outcomes. The QC on the machine was out, and after going into such things it is possible. Or I have severe inflammation from carry over, this may not be as dumb as first thought. My Ferritin level is 390pm/l which is high and my CRP is 64 which is high so I do have an inflammatory process going on. Or the cancer is back.

I have to weigh my options and I wish to do this with clarity and not with fear. Thinking about the options becomes interesting. As I insisted on radiochemotherapy initially that is no longer an option, I am too damaged from it and it is doubtful that it would accomplish anything.

So it is surgery (IF) that would be a total laryngectomy. My voice box is removed as that is where the cancer is, so I cannot breathe or swallow. So my lungs are connected to a 'stoma' a hole in my throat that I would breathe through.

My mouth is connected to my stomach by another tube and I would have to learn to eat and drink again.

I would have no vocal cords so speech would not be the same. I would need to learn to talk again.

All of this is overwhelming and against my desire to live as I would wish.....But.....

The equation is more complicated or is it solved?

My wife Rebecca has lived in high dependency care since 2008, paralysed, except for her right hand, and she maintains her love of life and support me as much as she can.

We are in love.

This year is our 35th wedding anniversary.

I made Vows. She made Vows.

I was laying on my bed worrying about Rebecca and I was visited by my last conversation to my Dad. We had not spoken for some years and he was dying from bowel cancer. He was a lovely man who had principles, morals and compassion. I learnt the principles of Charity from him when he came home one night and telling us that he had remortgaged the family home because 'Mrs ***' husband had died and she could not keep her kids, school and home together and we would pay her way so she could keep her family together. I understood my pocket money was gone. I understood that
what he was doing was right. I accepted the right way to do things -at least for me.

Oh waffle!

How do we reconcile the unreconcilable ?

How can I give up my throat?
How can I give up speech, swallowing?

How can I deal with being in such a difficult situation of being a TG woman in major surgery?


The only answer I have is that I made a Vow 35 years ago. My Dad's final conversation came to me "The only regret Son is that I'll die before your Mum, she is dependent upon me'

Dad, your daughter refuses to die before her wife.

I shall, if need be, have a laryngectomy and deal with it.

I'm Cindy and I do not give up.

This blog episode has been a very personal reflection.