Visited by cancer - your experiences, good and bad?

@stevecando54 A good way to deal with an incurable disease (on current treatments). The longer we hang in there the likelihood of new treatments is high 🙏 That gives me hope and strength too.

Unfortunately appendix cancer is still considered rare so I don’t see many testimonials. The statistics aren’t good. But I’ve already defied the statistics so far, thanks to Folfiri + Avastin and qualifying for HIPEC.

Cancer has sure taught me nothing is written in stone, and anything is possible - both good and bad.

Praying that everyone in this community keeps hope and looks for and finds nuggets of joy on this journey!! 🙏❤️‍🩹

I can't say that anything that occurred during my diagnosis, treatment and recovery was positive. Sure, I have had four years of clean scans, but to call that positive woyld be a gross overstatement.

Thank you all for your inspiring words. I too, have a controlled cancer. Most days I feel fine but now I have the additional complication of blood clots and do injections to combat them. As others have written , it helps to hold onto the joyful times of each day. Keep up the good work fellow travelers.

@stephenfleury. I’m so sorry to read you had such a very tough time after diagnosis 🙏❤️‍🩹 So glad to hear you’ve have had 4 years of clear scans.

It is extremely tough in so many different ways to have cancer explode uninvited in our lives.

I hope life has got back to a reasonable new normal 🙏

Well I read all the comments before replying. I am new to this getting surgery on Oct 28 th with a diagnosis of lms-r about three weeks later. I am now one scan into my new status with an " ned" with scans scheduled every 90 days for two years so I am elated with my new status. But overwhelmed with 'living" for 90 days at a time. The anxiety is great. But I am still jumping into life with both feet.... No holding back. But believe my I'm scared.

@jeshaw6801 Congratulations on your NED status 🙌

Oh my goodness I so get you. I understand you have rare LMS cancer? I’m so glad you’ve reached NED status like me with appendix cancer. Yet there remains the fear of our cancer returning and needing to jump back into the fight.

I have comfort in a wonderful medical team. Surveillance scanning is also such a relief for me because I missed all the symptoms of my appendix cancer and explained them away. I’ve lost trust in being aware when something is REALLY not right. At least I can jump back into the fight early. Something I didn’t last time!

It’s so hard not to “live” from scan to scan. I’ve been doing that now since 9 May 2022 when I had HIPEC and got to NED. Initially like you my scans were every 3 months. They have just moved to 6 months (but my blood tests remain 3 monthly). Sometimes all my tests were brought forward if something look d not quite right. So far it’s just been inflammation from surgeries and no concern. Don’t forget that benign factor: Adhesions from surgery.

I try very hard during that NED period of grace to live life as fully as I can in the way I choose to. I love spending time with my family especially my elderly father and my dogs. I take my father out to breakfast 3 times a week, a walk and a drive. He loves it. I love it. Sometimes friends and family join us for the breakfast. I walk my dogs daily and catch up with the neighbourhood dogs and dog owners. (My dogs have a home organised to go to if things go wrong).

Please do keep in touch with this community. It’s so wonderful to have others who understand where you’re at and who can encourage you to enjoy your life to the fullest 🙏❤️‍🩹🌺

The number one positive lesson I learnt was to stop wasting time / thinking it would roll on endlessly over the horizon. It’s amazing when you’re conscious of time how you can use it so valuably ❤️‍🩹 And if we get many years - a life extra well lived!!

I think that for me it's all still to new to assess everything. I'm at 6 months. I have been on a health journey that started before cancer and retched up during cancer treatments. Of all the things since cancer that has surprised me the most is how pleased I have been with my overall health! My last chemotherapy that 12/9 about 6 weeks ago. I cross my heart, I'm in the best health I have been in for decades. I never felt like I was in bad health. What I'm trying to express is that eating in a very specific way has changed my body's look and my physical and mental health in a positive way. I just wish it hadn't taken two serous diseases to learn this very life transforming thing.

@denisestlouie You’re so right how important it is to have good nutrition (as well as to exercise). Congratulations for how you’ve achieved that. Often many of us only learn that valuable lesson after a cancer diagnosis, and are motivated to put in the effort.

I was raised by parents who were very health conscious so I grew up with really good habits. I was probably better even than my childhood health and fitness in my 30’s and early 40’s. Life was great and I felt invincible. Things went wrong when I was promoted to a senior position at work. I had trouble fitting my daily responsibilities into 24 hours. Many things went downhill including my eating habits, exercise and sleep. My stress was off the charts. Before my cancer diagnosis I was already wrestling back control and resetting boundaries and habits.

My cancer diagnosis was a huge wake up call. A real kick up the butt. I’ve returned to my childhood diet (Mediterranean but also including lean unprocessed meat) and I ensure I exercise and monitor my sleep and stress. Positives from my cancer journey but I wish I’d done that before.

Thank you for sharing 🌺

Thank you for starting a great discussion @isadora2021 and for sharing your experience in such a beautiful and inspiring way. I can relate to your experience as well. I was overwhelmed when the doctor explained the stage IV CNS lymphoma diagnosis in the hospital and the extensive chemotherapy needed. I remember thinking that I was not strong enough physically or mentally to survive the disease and the many chemotherapy treatments.

I am now in the ninth month of NED with a lot of help from a caring and compassionate group of medical professionals. I learned so much about myself in getting to know some of these amazing people during my many days in the hospital and in the transfusion clinic. So many were willing to take some of their valuable time to share their own experiences and offer encouragement. Thru these conversations and my successful progress thru each treatment, I came to realize how incredibly strong I am. And most importantly, that I am a survivor. And as mentioned already, the incredible healing potential of a healthy diet and exercise.

So glad to hear of your continued remission @isadora2021 and sending best wishes to all for the healthiest lives possible.

My cancer forced into darkness and despair that first year. Bad news followed by worse news everyday. I wanted people to let go of me, leave me alone, and call it. I had an endless daydream of a bus taking me away. Each day I'd wait for that bus. Thankfully it came. It arrived in the form of a wellness coach with experience working with cancer survivors. Years 2, 3, 4, and now 5. So many wellness goals accomplished. That bus is hopeful, joyful, full of meaningful conversations, exercise with buddies, so many buddies. Try. Keep trying.

Amazing what just a little bit of Nutritional Awareness, Mild Exercise, Mindfulness, being Social everyday can do.