For what its worth, I'd like to share my experiences with my husband's nsclc dx in July of 2013. Maybe it will mean something to caregivers whose loved ones were just recently diagnosed. I'm sharing because I remember feeling totally beaten and completely lost at the time of diagnoses..what with all these new terms, treatments, side effect management etc etc!
Its been ten months since my husband's diagnosis and, according to the last PET scan, there has been no progression. I know that my husband is not cured, that cancer is totally unpredictable. However, there are a few lessons I have learned:
1. A lung cancer diagnosis is not necessarily a death sentence. You need to know this in order to remain focussed, learn the facts and avoid the paranoia as I experienced it. My paranoia (often based on half read information) drained me emotionally - a total waste of energy which, in hindsight, could be better used.
2. Learn as much as you can about the disease and treatment options. Grace is a wonderful resource and has provided us with enough information to discuss with our doctors and also to make informed decisions.
3. We are advised by Grace to go for second opinions. It doesn't do any harm to anyone...go for that second opinion!
4. Try not to spend many sleepless hours worrying about aches and pains that 'might be progressing cancer'. Refer to 2 above and if not satisfied, just ask your doctor.
Thank you Grace doctors, moderators and the rest of the helpful and supporting Grace community.
Blessings,
Delia
Reply # - May 27, 2013, 10:17 AM
Reply To: Dealing with a cancer diagnosis – my experience
Thanks for sharing your experience and thoughts, Delia. Getting a cancer diagnosis is like entering a strange new world, and the best way to find your way through it is by talking to those who have been living there. It's great when someone like you takes the time to describe how you have found your way after the initial shock of diagnosis.
JimC
Forum moderator
Reply # - May 27, 2013, 10:37 AM
Reply To: Dealing with a cancer diagnosis – my experience
Thanks that's quite an enlightening way to help.
Reply # - May 27, 2013, 11:06 AM
Reply To: Dealing with a cancer diagnosis – my experience
Thank you Delia! You just took me back to the day my husband was dx'ed and all the days that followed. I couldn't have written that better myself...how very true!!!!
Entering the world of cancer is a whirlwind of emotions and experiences and it helps tremendously to hear from someone who's been able to put it in perspective. Thank you again for sharing Delia and thank you GRACE for all that you are and all that you do!!!
Lisa
Reply # - May 28, 2013, 12:44 PM
Reply To: Dealing with a cancer diagnosis – my experience
Thank you all. Yes, Lisa, its a whole new world indeed.
Since my husband's diagnoses, we have had five people close to us, diagnosed with cancer: my husband's cousin, in December 2012 with early stage ovarian cancer (detected when she was about to get fertility treatment), an ex colleague with advanced lung cancer, a colleague with lymphoma, another ex colleague with inflammatory breast cancer (two weeks ago) followed this week by a young lady close to our hearts, with early stage breast cancer.
For fear of saying anything inappropriate, or knowing how meaningless (though thoughtful) words can be, I say little to them but this has certainly made me think a lot about. Some kind of supportive role I can play in their lives.
Blessings,
Delia
Reply # - May 28, 2013, 01:02 PM
Reply To: Dealing with a cancer diagnosis – my experience
Delia, sometimes saying nothing, but holding a hand, giving a hug, or some other gesture means more than any words you could say. It would be good for them to know that if they need to talk, you have some experience. Chances are they will come to you.
Debra
Reply # - May 28, 2013, 01:28 PM
Reply To: Dealing with a cancer diagnosis – my experience
Delia, I know what you mean. I've spent much of my adult life pain free. Meaning I've not had any close big losses for many years at a time. When I was younger I lost a lot of people. So I can say from experience that time does a lot of healing (not all). Some wounds don't heal but I've even lost some of how it feels to be in the middle of D's treatment and not knowing if he'd be hear to welcome the next season. Naively I know, I feel certain he'll be here to see next year. Hope kicks in to feel any void left to chance. It must be part of the nature of living.
There is an online site that helps schedule meals for families who need help. It's a good way to organize a group for taking meals to others. You might find it helpful in helping others. https://www.takethemameal.com/help.php
Thanks Delia your terrific,
Janine