Protecting Privacy and Gofundme, etc.

I'll share my thoughts with you.  I think this is a very personal decision and my feeling is that it will vary very much depending on one's personality.  I'm a fairly private person.  For me I wouldn't want people to know unless I chose to tell them.  I'm close to 40 with stage IV.  The stage IV journey has been one that has been much longer and much more unpredictable than I anticipated.  I've learned that I've had to tell my employer much more than I've wanted to I haven't had to tell them everything.  I've had a stroke, been hospitalized 3 times, twice from treatment, had brain surgery and now can't drive.  They have been very accomodating however I understand this is unfortunately not always the case.  Perhaps when further down the road you wouldn't have to tell an employer that you are a survivor.  In the midst of treatment and such it will most certainly be impossible not to tell them.  I think a gofundme would certainly alert many people to your situation.  Depending on how large your circle is that might not matter.  I'm in biotech in Cambridge so it's almost impossible not to bump into someone I've worked with previously just walking down the street to get a sandwich.  That being said I think most would see you as a survivor not as someone to overlook due to cancer.  Again, perspective is subjective.  I wish you well with your cancer journey and your decision.  Whatever you choose I'm certain it will be the right decision for you.

Best wishes,

Jennifer

It certainly was a difficult decision for us. We decided to use gofundme after my Stage IV diagnosis. I was working overseas and we weren't sure how much, if any, of the treatment costs would be covered by my insurance. It was a good decision financially for us. The diagnosis, unfortunately, cost me my job and career. Although I am NED, I have no doubt that the gofundme exposure has prevented me from getting a new job here in Asia. Two offers were actually rescinded at the last minute. Fortunately, there have been offers in the US. I think HR folks in the US can be a bit more objective. As I am still receiving treatment (Nivolumab), using gofundme was definitely the right call for us. 

Cary

As a Human Resources Director I never look at applicant or employee social media. I am not my employee's daddy. Employers should not consider your health status until AFTER you have been offered employment. If you did indeed have a promising future then I would not worry about a gofundme account because if you are an exceptional person you will open doors regardless of your cancer. Fighting and surviving stage 4 melanoma can only improve how you handle difficult times. As someone else responded my employer has been wonderful. I fought stage 4 for a year and several weeks ago became NED. I was able to work from home when I needed to and I have not lost any pay as my coworkers donated over 6 weeks of sick time.. I know lots of employers check social media accounts and I have heard some require you to give them access to your accounts. I would not work for an employer who asked about my personnel life.

Hi Anon,

Sorry about your diagnosis, especially at a time of life like this.  I'm older, and have really been a self-employed person almost my whole life.  I still chose to keep quiet about my disease, and only share with those who are close, and who matter.  A friend knew I was struggling to make ends meet when I needed to stop working, and had to travel extensively to see and be treated by a specialist.  He offered to set-up a gofundme page.  I declined.  Part of my way of handling my disease has been to maintain normalcy.  You can't do that when every conversation with everyone is about your situation.  And yes, I do some part-time on-call type of work and felt it best if employers knew nothing.  As long as I was capable of doing the job, it's none of their business.  I think you need to very carefully consider the ramifications of going public.  Personally, I'd say I am very happy I did not, especially now where I'm feeling normal and capable of doing just about anything I did prior to treatments.  Had I gone public, the stigma, as well as the unwanted sympathy would follow me to this day.

Gary

I have  been  following  this post with a lot of interest , as it has specifically  come up for me in the past week. I have lived an extremely  private life ,and would  be considered  a recluse  by any standards .  I am poor , on medicaid  for my medical , and except  for some posts on this forum  have kept my fight with this disease  private. It is  a stretch  for me to say what I just said.

I have gone as far as I  can  in the state I am  living  for any treatment , and except  for this forum  I  may not  have ever figured  out it is really  not adequate  for dealing  with melanoma . I just got denied  on appeal  for out of state/network  care,which has left me in a psychological , and physical  dilemma . I shared this with a neighbor  over a few beer's  the other day who has been a great  person  to talk to. She has followed  my journey , helped change dressings  I couldn't  reach,and made plenty  of food  for me over the year's .  She is poor as well . I just had had 5 biopsies  prior  to our  conversation , and she is really  the only person  on the planet  that sees the toll this is taking on me. She called me the next day after she had talked  with her partner  about  how to help get me to a specialist , and brought  up Go fund me.

I want to make the trip,but can't  come  to terms  within  myself  to put myself  out there like that.

I cringe  a little  just writing  about this,but melanoma  keeps  fucking with everything  I use to call normal . 

Bob

We were never meant to shoulder this sort of burden on our own.  The typical human response is to shut down and go into isolation so I understand where you many of you are coming from.  In the long run though that type of mentality only makes this journey harder for us.  There might be some horrible,terrible,awful people who will judge you based on your health situation but the majority of people will want to help you and make your life easier. 

There are no awards given out for those who keeps there disease a secret and deals with it all by their lonesome.  Fight the urge to keep this all to yourself.  It is healthy and liberating to put yourself out there and share your story especially if you need help.  This life is hard enough no need to make it harder. 

Best of luck to you! 

Hi Anon,

I agree with what many others on this board have said –  this is really a personal decision. (I mentor new advanced staged cancer patients and the first thing I tell them is this journey and all the decisions to go with it is theirs.) However, I have been incredibly open about my experience and I wouldn't change a thing.  When my husband and I were trying to start a family, it was difficult and I didn't tell anyone other than my mother. I had multiple miscarriages and felt like I couldn't grieve. It destroyed me. I believe because of that experience, I chose to be completely open about my stage IV melanoma diagnosis.  Because I was pregnant at the time of my advanced stage diagnosis, a lot of people were touched by my story. I've shared it via the news and social media.  Friends and family have put on benefits. Because of this, it is my belief that the prayers/positive energy have helped me stay strong,  physically, but more importantly, emotionally.  If you Google my name, you will find out everything about me. I didn't think of the disadvantage of this until I decided to go back to teaching. However, I tried to turn it into a strength during my interviews. I was offered both of the jobs I applied for so I do not believe it hinder the process. 

Best of luck in whatever you decide to do!

Ashley