Cancer survey for singles
I recently completed an online survey for single people with cancer. Here are some of my answers.
Please comment on the issues above (or others not listed) to whatever extent you feel comfortable. How did they impact you and what still concerns you in regard to your experience with cancer as a single person?
First of all, I'm still in treatment and will be so for the next two years. There are no "three months and then you are done" chemo treatment for brain cancer.
My issue with healthcare is that I just started a BRAND NEW JOB one week before having a major seizure and finding out that I had a brain tumor. Fortunately, I was covered by COBRA from my previous employer, but I had to pay for this out of pocket... and since I had a brand new job I didn't qualify for sick leave or vacation pay. I was lucky that my employer felt bad for my four months so I could have surgery. Do you need cancer care insurance? Are you in a similar situation to me? Help is always around the corner and I wouldn't worry about the treatment or having time off work.
I did return to the new job and worked for two months before I had to leave again to have another brain surgery. I still didn't qualify for health insurance or sick leave since I hadn't been there for a minimum of 90 days. I also didn't qualify for the Family Medical Leave Act. Again, I was left with no income (other than state disability) and still paying for COBRA.
If I was married I could have been covered through a spouse's insurance plan during this time. That would have been nice. Health insurance was not the only form of insurance I was having difficulty securing. In fact, I was very fortunate to stumble across special risk managers online that specialized in offering life insurance for cancer patients.
After the second brain surgery, I had major issues with balance and coordination so I went through physical therapy. (Also, I lost my driver's license when I began having seizures. You can get a license back after you are seizure-free for 6 months.) Needless to say, I had to depend on others to drive me around and I had to learn to balance and walk without a cane.
It has been five months since my second surgery, I am re-taking my driving test next months and I am now looking for a job. Since I have a pre-existing condition I am looking for a job that offers health insurance from my same provider. It's funny that my main criterion for employment is that they offer Kaiser insurance. (And by the way, I love Kaiser Permanente. Everyone who has helped me is a total badass.)
Please share your top three needs from the above list or others, and describe in detail what services would have been most helpful to you during and after your treatment.
The top need is "connections with other similar cancer patients/survivors".
I know every cancer is different, but brain cancer is SO DIFFERENT. It affects our freakin' brain, for crying out loud. Not only do we undergo chemo and experience anxiety like all other cancer patients, but we have BRAIN SURGERY and develop EPILEPSY and BALANCE ISSUES or other cognitive disorders. 60% of us lose our driving privileges for a time and that takes away our freedom.
I understand that less than 1% of all primary cancers are brain cancer, but it drove me crazy (and still irks me) to see support for many of the "popular" cancers and feel left out.
Where's my special support group? I'm lumped in with old-timers with brain tumors. Where's my pink ribbon day? No one even knows what color represents support of brain tumor research. (By the way, it's gray.)
Please describe how your experience as a single person might be unique from someone with a partner or family who is dealing with cancer.
My experience is unique because I do not have a traditional family (mom, dad, siblings, blood relatives) to support me. However, in the process of dealing with cancer I have learned that family is who I choose to have in my life and the people closest to me are my boyfriend (and now his family), my best friend, my best friend's dad, and everyone who is supporting me in my world.
As a person who has been on my own since 17 (and I'm almost 30 now) it was very hard for me to accept help from others (actually, it is still hard... it makes me cry just thinking about it). I had to learn (and remind myself every day) to get over my ego. I had to understand that I can't control every situation, but I am able to control how I respond to stress and handle my emotions.
I think cancer has enriched my life... which is a very weird thing to say. But the grass is now greener, and food tastes better, and I appreciate life so much more. I do not take things for granted.
