Ace Posted March 29, 2023 Share Posted March 29, 2023 Hi all, My 29 year old wife was diagnosed with stage 4 lung cancer. My wife was pregnant throughout 2022 and had really bad symptoms such as a chronic migraine, bad pelvic pain, and blurred vision which were all put down to pregnancy symptoms. A couple days after giving birth her vision got really bad - we ended up going to an eye hospital who liaised with our local hospital to get scans expedited and then given the diagnosis 3 weeks after the birth. The cancer spread to her brain (with significant growth), bones, eyes, and liver. She had 10 rounds of palliative radiotherapy to the brain and 1 round to the back/spine. As her type is EGFR exon 19 del, she has been taking tagrisso/osimertinib. It is now been 5 months since on tagrisso and there has been improvement all around. She was on morphine at the start but no more painkillers and there is a bit more normality. We have a super active 2 year old in addition to our new born (who is coming up to 6 months) and are of course terrified for the future. Justin1970, Tom Galli and Scruboak 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 29, 2023 Share Posted March 29, 2023 HI, So sorry to hear about your wife's condition, but glad you found us. I'm happy to hear that her condition is showing improvement and I can attest that we have many survivors here who were diagnosed at Stages III and IV and are still living their lives. While your here feel free to ask any questions you have and I'm also sure you'll hear from others who were in similar situations very soon. In the meantime, there are three items that may be of assistance to you. A blog was written by one of our major members who was diagnosed with Stage III, then Stage IV lung cancer close to two decades ago. It is titles "10 Steps to Surviving Lung Cancer"; from a Cancer Survivor" and you and your wife would benefit greatly from reading it. Lung Cancer 101: This is a plethora of information here that can help educate and empower you and your wife through this difficult journey. It can be found here. Caregiver's Resource Center: As a caregiver you have unique demands and needs. We have a forum where caregivers share their experiences and provide support for one another. It is on this page. I have no idea of why your screen name is "a no one" but know that you and your wife are important to us, and you'll find great support here. Lou Ace, Justin1970, Scruboak and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted March 29, 2023 Share Posted March 29, 2023 I second what Lou said about your screen name. This group is one of the gems in my lung cancer survivors' "I can do this" necklace. You-- and your wife, if she chooses-- are welcome to be here. That makes you a someone, indeed. I, too, am Stage IV. So many of us are. And so many of us with Stage IV live for a long time, with meaningful lives. One of my favorite people, in my local lung cancer group, has been Stage IV for 16 years. It's said that hope is a muscle, that we have to work it to keep it. He certainly does. Making plans for a few hours ahead, or the next day, or next month, is a way to flex the hope muscle. The hardest thing in the world to hear is what I am about to tell you: I, and others, live as fully and richly as possible, one hour, one day at a time. I plan, but without expectation about whether the plans will come to fruition in the way I've hoped. This stupid cancer has taught me that NOW is all I have, and I get to choose what makes that meaningful. I have a link in my footer about how to be your own best advocate; I encourage you to take a look, and to learn as much as you can about the disease itself. Welcome here; hope to see you around. Karen Justin1970, LouT, Scruboak and 3 others 6 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 30, 2023 Share Posted March 30, 2023 Hi, I am a mom of a 6 year old so I get your family's anguish (also EGFR exon-19 and on Tagrisso). Do not hesitate to reach out to this forum with any question or just to vent. So sorry you received such diagnosis during a most joyous and difficult part of life, how unfair life can be but your wife is here and kicking so celebrate that! Welcome to this awesome support group! Scruboak, LouT, Ace and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 30, 2023 Share Posted March 30, 2023 We are all someone! Welcome here. Lou, Karen, and Lily have conveyed helpful information about your plight, and your wife's. Arguably, yours is the greater burden. You are not treated but instead, stay on the slide line and watch the mayhem unfold, helpless to influence outcomes. Then there are your children, their questions, and your struggle to explain. I am approaching 20 years of life after being diagnosed with Stage IIIB non-small cell lung cancer (NSCLC), then progressing to Stage IV after supposedly curative treatments. My wife and I occasionally review the bidding of my time in treatment and her feeling of helplessness. We both suffered from uncertainty. Mine was measurable in time from treatment to treatment, from scan to scan. Martha's was a long uninterrupted interval of deep disquiet. She had no yardstick to her doubt. She had no way to relieve my burden. She was in a void of vulnerability with only the dimmest light showing in time hereafter. Now, almost two decades later, her recollections are still chilling. As I listen to her characterizations of my lung cancer experience, I realize she had only faith to rely on. Off time we forget that faith is more than a theologic construct. It is an innately human trait centered on belief, confidence, and conviction. She was firmly grounded in the idea that I would survive. Her grounding planted a seed of hope that sprouted into a long life, a full life together. I believe from faith comes hope. She could not see the chemotherapy agents attacking my cancer. She could not touch the ionizing radiation that annihilated my tumors. But she did believe these agents were working. Her faith fostered belief and ignited hope for both of us. And "hope is a good thing" It is "the best of things." And "no good thing ever dies." Be not concerned about the future. To do so means trying to carve out life in rocks that are impenetrable. Live in the day for your family. Look for little instances of joy in your daily life and when you find one, celebrate. Stay the course. Tom LilyMir, Ace, LouT and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Ace Posted April 2, 2023 Author Share Posted April 2, 2023 Thank you all - I only picked 'a no one' as I couldn't think of anything 😅 I have now changed it. Really happy to hear people are living a really long time. 29 years old is really so young and we're scared she may not get to see the kids grow up. The kids will grow up with their mother having cancer being the norm. LouT, Tom Galli and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted April 2, 2023 Share Posted April 2, 2023 I like "Ace" much better. Lou Justin1970, Ace and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted April 4, 2023 Share Posted April 4, 2023 29 years old is very very young for lung cancer indeed, what rotten luck. However, younger patients usually fare better so try to focus on that, and the fact that many new medications are in the works. I know well about fearing for your kids growing up without their mom, and watching them witness her very tough cancer journey. What most terrifies me about my lung cancer are the thoughts of me not making it and my kid grieving much for me. Nasty thoughts that make me almost lose it sometimes but I always crawl back from those dark thoughts and focus on hope. We won't know the future until it comes so trying to make the best of that we have now is the only possible way to actually live with cancer. Let us know if you or your wife have questions to just want to vent. Tom Galli, Ace and LouT 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted April 4, 2023 Share Posted April 4, 2023 Ace is a solid name-- you are the Ace in the hand your wife has been dealt. We're here. K LouT, Tom Galli and Ace 3 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.