I was asked by a representative of Cure Forward to write a little something about my experience with cancer, so that a newly diagnosed patient might gleam some information or just support for their experience.
Cure Forward information can be found on their website.
Cancer is not fun. It’s a whole new world of tests, more tests, doctors, more doctors, blood tests, labs, biopsies, chemo treatments, etc, etc. Even getting diagnosed can be painful and finally getting a diagnosis is very scary and painful.
I was, unfortunately, misdiagnosed for over a year and an half. I had a compression fracture in T 10 that was initially diagnosed as a sprain. Later, of course, and after many very difficult tests, that the compression fracture was caused by the cancer called Multiple Myeloma. I had never heard of myeloma. And the world of doctors, especially oncologists was as foreign as going to Mars.(The Martian reference ). One suggestion here, if you have abnormal pain,as I did, don’t stop till you get and answer. Pain in the body is not normal!!!!!
I learned I was resilient, and I could put one foot in front of the other and do what was necessary. But, I couldn’t have done it without the support of my husband and family. My first bit of advice is simply have a support system. Someone who can be at your appointments, drive you when you’re too emotional etc. Even now after 10 years,my husband still is my strongest support and comes with me to 99% of my appts.
Get informed! Learn everything you can about your type of cancer. I was pretty alone in this when first diagnosed. I didn’t know a lot about myeloma and there wasn’t the support groups there are now. So now I use the Myeloma Beacon daily as well as the Facebook myeloma support group.(there are 2). There is also a group called Smart Patients. I’m not sure but I think the link is associated with the cancer society.
Try googling it id necessary. Ask questions, ask others about their experiences. It really really does help other what other people are going thru. I also don’t (usually) hesitate to call my oncologist if anything hurts or seems off.
Thirdly, it’s all about a new normal. I can’t do what I use to do. You won’t be able to do all you used to do. It’s hard to accept but there it is, you kinda have to. One thing that really helped me was have a routine, a structured schedule for some things. If I didn’t , I spend a lot of time obsessing about, why me? how did this happen? will I get better? I now walk everyday, and have hobbies such as cooking and reading I do daily. Structure may not work for everyone, but it gave me something to hold on to.
If possible, get a second opinion. Talk with experts in you cancer area. Recently we flew to Seattle to the Seattle CancerAlliance Center to consult with a myeloma specialist. Even though nothing really new was revealed, it was reassuring that my local hematologist /medical oncologist is on the mark.
My understanding of Cure Forward is that they are a patient advocate group. They maybe able to guide you to clinical trials. I have not pursued any clinical trials myself, but if I knew it would be helpful at a certain point I would.
Remember, it’s going to a journey. Chemotherapy, radiation, surgery , none of it is easy or fun. But if it can allow you to live cancer free or even in remission ,it’s part of the package. The advances science is making and groups like Cure Forward, can give us hope for the future.
For myself, I’m on a new drug treatment, after having been on an oral chemotherapy for 5 years(Revlimid and Pomalyst). Now I’m on Velcade which is given as a subcutaneous shot. I am hopeful it will put me back in remission and keep my quality of life good.