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donfoo Offline OP
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What is the general experience of those who have shared publicly their personal blog or journal?

From a professional career or business standpoint, does the fact many are aware of your situation hinder current or future business?

I run my own business but want to hear if others have had issues arise due to your cancer status, even if you are back at 100%. I'm just a bit fearful some partners and clients may elect to not do business with someone who has a chronic illness that might affect one's performance.

don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Don,

I have been self-employed since about 2001. When diagnosed I was involved in a long-term turnaround project and had righted the ship just as the bad news hit. It created turmoil and in-fighting amongst the owners and a group forced me out and the company tanked within months. Fast forward to a couple years later. I was asked to do a project that was ten minutes from home and as I got rolling they offered me a job but when I showed up thin and weakened somehow the offer was "subject to approval of the new position" and it never happened. I was sure it was because of the cancer but I just kept focused and eventually worked into several years with the company. When I left there they were really angry because I did not give them an opportunity to counter. I figured after four years or so they wouldn't and took another project. Even though I know the President of the Division well, they have not even talked to me for several years.

The net of all this is yes it could impact you to publicly put yourself out there but much like concern about recurrence, if you worry about it this is one area that you do have control. If you have trepidation, you have answered your question somewhat. You could always journal and as you get back to your "new normal" you could always blog from your journal and catch up. I think some of the old timers here would tell you that I have never been shy and have probably shared enough of my life both past and present that I don't plan on getting any business propositions soon from OCF members.

A second option is a ghost name to protect the innocent. I am sure I will never put the things I have shared here on LinkedIn or Facebook since it is too public for me.

I hope this helps in some way.

Ed


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
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I'll post this anyway for those that may benefit.

I agree with Ed that it depends on your personal situation, business or occupation. I also agree that going public has it's negatives but it does have it's positives.

Having gone public (in a big way), allow me to share my experience.

I'm in the music industry. I played and toured professionally (guitar/mandolin/vocals) much of my career. I "retired" from public performance in 1994. I came out of retirement in 2009 and have cultivated a second career locally performing at venues in the area. It's been a very successful venture. My main "day job" is in the CD/DVD manufacturing industry. I've been involved in this business for over 15 years. I'm National Sales Director for a CD/DVD manufacturer and printer. I deal with customers from all over the country and the world. Being a musician, many of my customers have become friends and I know them on a personal level.

I deal with the public as part of both aspects of my work. Being that I would be away from my jobs for a rather lengthy period of time, it was best to inform folks of my status.

Personally for me, there was another aspect and that was financially. Being away from work would stress my financial situation to the breaking point. While my insurance covered my medical expenses, my monthly expenses would have to be covered as well. A dear friend held a benefit for me (I'll speak more about this shortly).

You will discover who your friends are. Some you thought were friends will disappear. Don't be hurt by this. It's just their way of coping with your diagnosis. Stay in touch, if even by email or social media. After all is said and done, reach out to them. If at that point there's still no response, move on. There are more important things in life.

On the contrary, people you didn't even know and those from your past that you may have forgotten about will come out of the woodwork! You will be surprised how many people really care and will support you in your battle. Remember, this is a war and the more soldiers you have on your side the better!

From a business standpoint (and it depends totally on what you do), I found an overwhelming support from the customers I shared my situation with. Fortunately, I'll be able to continue to work remotely to a degree. I can access my email and do many things I did while in the office with the exception of answering the phones. I still can work with many customers via my cell and email.

Ok... going public in a big way. I have an email list of close to 1000 addresses of people who have seen me perform. I sent an email to that list explaining (in a rather tongue and cheek way), what was going on. Also, I posted the same thing on my FaceBook page.

I mentioned the benefit. My friend and singing partner put together a benefit at a local venue where we performed on a regular basis. We are quite popular there and always packed the house when we performed. We also had a silent auction. The benefit was to raise funds to help us cover our living expenses while I'm undergoing treatment. This was again announced through email as well as locally with posters, newspaper and radio advertisement (all of which were donated).

I don't know if I can put into words the outpouring of support and love I received. It was unbelievable! It was an evening I will never forget. Many great musician/friends came out to perform. I was still hurting pretty bad from my surgery (neck dissection) but with the help of pain meds and good old fashioned gumption I performed solo and with my partner.

Enough was raised between everything to cover our living expenses for several months. What can I say? All I have to do is worry about fighting the battle.

My situation may be different that most being in the public eye, but I hope you can draw from it. At first, I was very reluctant to share my diagnosis. I kept it close to home and only a few folks knew. My partner urged me to share. Her husband had H&N cancer as well and based on their experience, she knew the benefits and negatives of doing so. My family and many friends urged me to share as well. I have no regrets doing so. The positives far outweighed the negatives and I have an army of folks behind me. Positive thoughts and prayers go a long way in helping to defeat the beast.

And one more bonus.... I can tell you this... When I get through this and hit the stage again (and I fully intend to do so!), there will be a packed house in support!

"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
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Posts: 117
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Posts: 117
Mark (TMan) and Don !!

Welcome to OCF my fellow warriors from CSN. This is another great source of information for you both. The survivors on this site are awesome and so willing to help you as much as they helped me 2 years ago.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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Hi Ingrid!

Foo referred me over here. It's a great resource for sure! I've done quite a bit of reading thus far smile

"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
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Posts: 5,260
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"OCF Canuck"
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"OCF Canuck"
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Hi and welcome and good luck through treatments!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Sounds more like you are telling us how popular you are. I still have all of my friends , excpet the ones that died. I make new friends every day and look like Mortimer Snerd but who cares. Welcome aboard and good luck.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Don't mind my words. I always tells it likes I see it.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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No worries... You're right and I'm taking advantage of it!



Thanks for the welcome smile

"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: May 2012
Posts: 162
Likes: 1
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Joined: May 2012
Posts: 162
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I can tell you this was a concern for my husband. He insisted his caringbridge site be private, so that potential one-day employers could not access this very personal information. It was a bit of a pain to set up, but very easy thereafter. Best of luck, Ana


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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