What do you think is most important for someone newly diagnosed to know? What do you wish you would have known at your diagnosis?
There are many important things to know about lung cancer upon diagnosis. This article has a lot of useful information on what comes next after diagnosis: https://lungcancer.net/living/diagnosed-whats-next/ and it can be important to make sure you are making medical decisions that work for you: https://lungcancer.net/living/making-decisions/ and communicating well with your healthcare team: https://lungcancer.net/living/communicating-care-team/ . An oncology social worker can also be a great help in navigating your journey: https://lungcancer.net/living/find-your-advocate-oncology-social-work/ And, always reach out here with any questions! Best, Margot, LungCancer.net Team
Lung cancer surgery is the most horrific pain You will ever experience. You have to fight with every part of your being, mind, body, soul, every breath and you will be i"n the moment" fighting like that for a long time to make it through. Have more than one advocate for You in case one caves on you. One of your advocates should be outside the circle of your family and friends, a professional. Be very CERTAIN you have an in house care provider set up and I'm place before You return home. You will need this trust me. Stock up on protein drinks before surgery so when you return home they will be at your reach. You need this protein for healing. Not much will bring You pleasure or relief. If you can escape through music, prayer, essential oil therapy. Use these. For myself, I needed something to compress/hold my back, I had terrible neuropathy. What I found worked best for me was wearing tight undersized tank tops. Ones that were 1 or 2 sizes too small that would compress my skin, fat, muscle, nerves from irradicating, hold and settle the neuropathy down. Being large breasted did not help. So being braless and weighted down in front probably caused more nerve pain. The tight tank tops helped in supporting my breasts also. Palliative care is extremely important in your healing. Even after surgery. It may help to have some one simply hold a foot in their hand. This will have a calming effect. Positive touch overides pain. I am not saying massage your feet just yet. You will be in too much pain to have anyone messing with you, but simply hold your feet. Later, much later, maybe weeks later palliative care will be beneficial. You will know when you are ready, and where you want it. Definitely throughout post operative care. Drink tremendous amounts of water. Keep your face neck hands arms sponge bathed and moisturized well. You will Be very busy with in house care appointments, visiting nurse, physical therapist, caregiver etc.. After that you will be very busy with lots and lots of medical appointments for the next 5 years. I stayed in a nursing home about 2 weeks post surgery before returning home, it was awful there. Nursing homes are not set up or knowledgeable for this kind of care. They do not know how to move, transfer, a person with this kind of surgery, so have all your based covered. When I returned home there was supposed to be care providers in place. I played in bed for over 2 weeks before I could even call to find out why I was alone. Have everything prepared before you go in for surgery. If you are a single, a senior and alone, these things are very important. It is not uncommon for care provider agencies to be behind in what they are doing or say they are doing. This can go on for weeks and weeks as it did and has with me. Cover all your basis ahead of time. Call up "Ageing and Disability " pre surgery. Them believe you will see better days, and you will. Just know you have to fight for yourself, he your own advocate. Of You are reading this here now pre surgery and on this site pre surgery, you will be getting the "REAL" and well directed. I did not know this site existed pre surgery, so you are well on your way to much success having all this information. Best of wishes and God's love to you. There is hope after cancer.
I sure do wish there were edit buttons so I could edit my text. I apologize for the typos folks.
Thank you so much for this wonderful response
I believe one big rule is to NOT believe everything you read on the Internet about lung cancer survival. There are so many advances in treatment happening everyday that most of what you are reading today applied to diagnosis that were established 5 years or more ago. I made my self more depressed and crazy by going to every site I could find trying to find a better answer than what I was reading. My oncologist would not give me his opinion as he said everyone is unique and different. I am thankful I am two years in now with now evidence of disease after being diagnosed as stage2B but resected as 3A.
I have/had Small Cell Lung Cancer and still today more research is being done to people who have Non Small Cell Cancer. Apparently I’m in the minority. Nothing new for my type of cancer. I went through the whole regimen of surgery, Chemo and radiation. I’m into the illness going on 2 years, too. I’m being watched very carefully every 3 months I go for a Pet Scan and Brain MRI’s. The only thing they know is that this cancer is very active and could metastasis to the Brain. I too went on the internet to seek more information, but the only thing they have are clinical trials.
Thinking of you
I know the pain and feeling following surgery when everyone goes home and especially the nerve pain. Reach out through surgeon and hospital's cancer center to oncology social services. Blessings