Being Mindful of Health Changes
I learned a lot about cancer when I was diagnosed in 2014. I did not know much about lung cancer and what I thought I knew ended up not being completely true. I learned a lot about the stigma of the disease but that is a whole different topic and blog post for another day. The disease affects more people than I had originally thought and even those of us in our thirties. Another thing that I learned after diagnosis is that you have to be very mindful of things that may “pop up” or pay closer attention to the headache that won’t go away or the new pain that does not have a true cause and seems to last longer than it should.
Lymph nodes in my neck became swollen
In 2015, when the cancer was not responding to treatment or it was not like we had hoped, I had a few things “pop up”. I had a lymph node enlarge in my neck and a very strange bump appear on the back of my head.
We had started to entertain the idea of traveling to Boston for a clinical trial that may help and while the decisions were being made, I made sure to hide my neck as best as I could. My hair covered the bump on my head, but I knew it was there.
Unsure why the swelling went away
After starting the treatment in Boston both the lymph node and the bump on my head decreased significantly. I always joke that after taking the first dose at the hospital in Boston, everything was already significantly smaller by the time I was in the air headed back to Chicago.
I never quite understood exactly what the bump on my head was but I was happy to have it gone after a few weeks of the new treatment. The treatment in Boston was a bridge treatment for me as it allowed me to get to the next even better treatment and then to the clinical trial that would deem my disease no evidence of disease.
Remember to advocate for yourself
I have always had an issue deciding when to contact my oncologist over pain or a new bump. I remember that the lymph node on my next appeared quite quickly and at that point, I was in the city for appointments at least once a week. For those of us who only see the oncologist every 3 months, it may be harder to decide whether to call or message. If something were to “pop up” for me now, I would immediately message my care team if it was a lymph node. As for aches and pains, I wait out at least a week and if the pain does not subside then I contact someone to see if I need to be seen.
There are decisions that need to be made after being diagnosed. Be your best advocate and if you are concerned then send a message or pick up the phone and make the call to your care team.
Has there been a situation where you have advocated for yourself and it helped you?
Where have you found the most support during your lung cancer journey?