What I've Learned on My Cancer Journey
Last updated: September 2018
So, what have I learned on my cancer journey, what I would like to see in the future, and what do patients need to know?
1. I have learned cancer stinks, regardless of the type you have. After what I have been through, I cannot imagine a child being treated. We need to find a cure.
2. Lung cancer kills more women than any other cancer and it has been predicted it will be the number 1 killer of men and women by 2021.
3. Lung cancer kills more people than breast, colon and prostate.......COMBINED.
4. Cancer affects more than just the patient. Family, friends, and anyone else involved caring for the patient feels the effects.
5. There are many support groups, both online or in-person, to help lung cancer patients and those helping patients through their journey. Some groups are supported by nurses, doctors and other professionals and many are patients or caregivers, some incorporate both. To name a few: LUNGevity Foundation, LungCancer.net , LiveLung, Bonnie Addario Lung Foundation.
6. We need to help any way we can to get the proper funding for research and cures.
7. We need to encourage each other, listen to each other, and share knowledge that potentially will help.
8. Cancer can be financially devastating. Many cancer patients cannot work, this often forces decisions like food or medicine, lights or treatment, under-insured and unable to either pay for it or cannot get what they need because of their diagnosis. NOBODY should have to delay or not have treatment if there is a treatment available and they cannot pay for it. We do not live under a survival of the fittest or richest. I don't know completely how to fix this but I sure would like the opportunity to discuss this with former Vice President Biden.
9. I have worked in the medical field in some my entire life, I have told people to get a second opinion...I should have followed my own suggestion. If you are not comfortable with what you have been told, or how you were treated, get a second opinion preferably with someone NOT associated with your doctor and their healthcare system.
10. It is scary to change physicians when you are being treated; however, it is fine if that is your decision. Sometimes people change because of personality issues, some people change because they feel like they are not being heard or cared for. The last thing a cancer patient or any patient for that matter needs is to not trust or like your doctor. This just adds to your another level of stress you don't need.
11. Ask/accept help if you need it. I am one of those people who have always volunteered for anything I could help with. I find it hard to ask /accept help, but I have to for a variety of things.
12. Find a support group. Ten years ago there were very few lung cancer support groups, we just did not live long enough to keep one established, but times are a changing we are living longer. We deserve a support group that addresses our issues. If there is not one close to you find a cancer support group.
13. Keep a paper and pen available in between your doctor visits so you can write down things you want to discuss. Inevitably if you don't you will forget.
14. "Chemo brain" is real. "Chemo brain is a problem with thinking and memory that can happen during and especially after chemotherapy treatment for cancer. Thinking and memory problems are called cognitive problems". Let your doctor know if you think it may be a bigger issue. Tell your family and friends they need to understand.
15. Scanxiety another real issue -" the tension which builds particularly amongst those who have or have had cancer as they move towards their regular check up scan, hyperscanxiety being the period as they await results"! Tell your doctor ifyou have scanxiety, especially if it is severe.
16. This list could go on forever, but the above are some of the biggest. What is the last thing I learned? I know exactly when Lung Cancer Awareness Month is and it is in November.
I hope my mini novel about my dealing with lung cancer for the last 3 years helps you understand what the patients deal with. If your a lung cancer patient I hope you see you are not alone. If you are a caregiver I hope it gives you a better understanding. If you read it and you do not have cancer if some day you do or have someone close to you that has cancer I hope you remember reading my story.
What healthy habits do you use to improve the quality of your life?