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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Welcome Mark and you are spot on. I think often of Tommy Boyce and Bobby Hart and the infamous line..."cuz you can't lose a friend you never had...". Many wander away out of fear how to respond when no response was really necessary.

Rock on or play on or whatever you do...just keep in keeping on. I want to call you Mr T but then my mind wanders to "come here woman, let me put my tongue down your throat..." and that might be construed as too sick to be funny. Fasten your seat belt...the road may get bumpy but you have found some new friends and when they say I feel your pain...they ain't kidding!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
Likes: 1
Thanks Uptown,

Seat belt is fastened and thank goodness! Based on week one, I'm in for one hell of a ride for sure wink

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Well I'll share a bit I guess as my poor excuse for a blog has changed my life in many ways since starting it two years ago. Where I've shared extensively online both on Facebook and on these forums about my struggles through the cancer experience, I believe my best writing, and healing moments, happened on my blog.

Professionally the cancer experience can change the way people see you, and that's more of a testament to the type of person "they" are and speaks nothing about the person you've become due to your experience. I ran hotels before my diagnosis and it was my life, I was very good at what I did, leading one of my hotels to the highest rated property in N. America in the largest hotel chain in the world in "every" category that the brand judged on.

My employers, who were publicly supportive during my treatment were extremely reluctant to bring me back due to my health and we ended our relationship when it was apparent that I wasn't the same person after treatment. To prove I was still capable I jumped into a business opportunity that proved to be an impossible challenge due to many factors, one of which was that even though driven, physically, mentally, and emotionally I wasn't the same guy.

I started my blog on these forums during this time, opening up and sharing my struggles etc. and where I knew that I'd never be the hotel mogul I wanted to be before cancer, it didn't mean that I couldn't make an impact in other areas. I was fortunate to be approached by a friend who understood the struggle, and offered guidance and an opportunity to make a difference, that friend gave me something more than an opportunity, he gave me a purpose.

Now I feel like I'm able to contribute, even if in a small way, and I'm not sure I'd have that if it weren't for writing in a poor excuse for a blog and sharing.

My experience for what it's worth my friend, glad you've found these forums, I hope they are as helpful to you as they've been for me.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
Likes: 1
Hi Eric,

You said it right here:

"the cancer experience can change the way people see you, and that's more of a testament to the type of person "they" are and speaks nothing about the person you've become due to your experience."

That is the risk one takes when going public with their cancer.
I question if one decides to keep quiet, would the secret eventually come out anyway? Would others not notice something different? Especially if you've had radical surgery. I had a selective neck dissection and it's barely noticeable (although I can see a difference). Most of my work is on the phone (at my day gig) but I'm in the public eye as a musician/performer. Like you in your hotel pursuits, I don't know what the future holds concerning my music and performance. Perhaps I will have to pursue another avenue where I can make an impact and have a purpose (like teaching).

I believe one must pursue their passions and be rewarded for their accomplishments. I found your post to be inspirational and I thank you for sharing. Best wishes, positive thoughts and prayers.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jan 2013
Posts: 57
"OCF Canuck"
Supporting Member (50+ posts)
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"OCF Canuck"
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 57
Afternoon gents
Kind of weird but worked the other way for me one of my contracts I was trying to sell became saleable because buyers thought I was not going to be able to carry on with it with my health failing,sometimes it works sometimes not,I'd rather have my health btw. Ken


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I was going through some PT and the front desk lady was telling me about a band her husband was putting together called Stage Four. I thought that was pretty cool although I never went to see them.



SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Not a blog but a CV caused some interesting reactions to Alex's illness.

We struggled with his CV when he was trying return to work (previous job long gone) and we had a two year gap to justify.

At first we thought that we would just leave his health issues out leaving the 2 year gap until a recruitment agency asked about it and when told gave a sigh of relief and said that he was worried Alex had been in jail or something.

From that point forward we gave sketchy details about his illness and explained further when he finally got the first interview. Unfortunately, just the illness put him behind the eight ball and it was months before he got an interview.

So fast forward 6 months and he gets the job ...

He has been quite open about his oropharyngeal cancer and also in an attempt to create awareness, has also discussed his HPV status. I think the apprentice only heard the H and the V. A couple of weeks into the job, Alex scraped his hand and left a tiny speck of blood behind. Apprentice downs tools and Alex is sent home. A couple of weeks later, Alex came down with shingles which was quite visible on his face. After being treated with ***cyclovir, and getting the shingles under control, he went to work, and the apprentice again downed tools and refused to work with him. His employer demanded that he leave work and not return until he had a doctors certificate to say he was not catching. I am SURE this would not have happened had Alex not shared his health issues. I was appalled that a bunch of non medics took this action when all they had to do was ring their on staff doctor to find out that shingles is not catching when it is scabbed and clearing. AND the apprentice would have to get close enough to give Alex a big kiss to catch it.

things have settled now, but those first few weeks ...


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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