Besides all the pain. anguish and physical and emotional struggles, MBC seems to give clarity to the mind (at least it does mine).
Things fall introspective without too much mental debate. It is evident to me that what seems important is important and and those things cannot be clouded by other things that are less so. I feel that I have gained some wisdom through this travail. Further, and dare I say it?, I am happy and content.
What say you?
The above post needs a clarification. The reason I am able to be happy and content is that at the moment I am not in any pain. If I were in pain, it would be a much sadder story. I am the true wimp when it comes to any pain, not a happy camper.
This is by way of a humble apology to those who are suffering from pain. I am sorry if I sound like a Pollyanna.
jersey-jazz,
Enjoy your pain free time!
Best,
Colleen
I am from NJ! Where are you? Mine Philadelphia area
I am from the opposite end, the Northwest corner of NJ, where the farms give way to the mountains, by High Point State Park and Stokes State Forest. I call it God's country.. My friends and I like to go to the sculpture park down near you. You live in a beautiful area of NJ. If you get the urge to visit up this way, please get in touch.Frances
So, Delaware Water Gap area? My brother lived over that way.
Where are you being treated?My younger relative with BC lives in Clinton but I think that's further in.
At this time, I am being treated by Memorial Sloan Kettering, mostly up in Montvale NJ and sometimes in Manhatten.
have you considered checking out Dana Farber? They were the most thorough when I checked it out 3 years ago. But, now we have covid to be concerned about and of course the winter weather!!
No, now Im in Bethesda, MD and have been for years. I am right next door to NIH.
Sorry! What is NIH?
National Institute of Health
Jersey-jazz -
I not only like the way you write (!), I like the way you think! 
I agree....The time since my diagnosis has without question been the happiest (like frequent, involuntary spurts of dancing) and content (just inner peace/balance) of my life.
This is no doubt made much easier by the relative good luck I've had with the course of my disease and other sources of good fortune in my life (e.g. generally happy/healthy children, etc.), so this is not to dismiss the very real and justified unhappiness of others. I almost feel guilt about my happiness sometimes, but then stop myself re: that type of thinking...
But, after sort of recognizing everyone's mortality and vulnerability, cancer or not, I think that this is far from the worst thing that happens to people, not even close.
Within moments of being diagnosed I recognized that there are so many advantages to this way of dying...adult onset (vs. like a child with cancer); time to sort things out (practical matters and internally); periods of hope for decent or better quality of life, pursuit of interests, etc. ; and, as you note, wisdom and perspective that I'm pretty sure I'd not have gained had I just blindly continued my life pre-dx.
I'm sure most of us know others who have had worse diseases (not to mention worse life circumstances). I have/have had loved ones with ALS, schizophrenia, Alzheimer's, etc....I would take this over those and similar any day of the week. I mean, so many are dying of Covid!...We're in much better situations than that!
If life were measured not by number of days breathing but by # days being happy, I've already had more than my fair share.
I really don't know why this is and I've sometimes tried to figure it out, without success. Brain chemistry? Life experience? Random "luck"? Almost certainly just random, like so much of what happens to all seven billion of us...
I'm glad you woke up today feeling happy and sharing that with us! I hope for many more happy days for you and all of us!
Be well,
Lynn
Thank you for your compliments and for your comments. I like the way you express yourself, as well, and I agree with you.
I too am prone to dance around out of happiness and, yes, joy. I think that it is the realization of all that I have been given in this life and, also, all that I have been able to give.
My last living first cousin Joe, age ninety, died the other day, in Maryland. I absolutely adored my cousin and, at this point in time, I am planning on making the trip from the north west corner of New Jersey and staying in a hotel for two nights. I want to say goodbye to him properly. My daughter and my oldest son have opinions that thay have not minded sharing with me. My oldest son, the Eagle Scout that observes every rule, urges me to stay put for fear of my safety. My daughter acknowledges that I will do what I intend to do and so agrees with my intent. I think that if I did not have MBC, I would be dithering around. We of the MBC club do not have the time to dither about and, luckily for us, we are privileged to know that.. This is it.
Unbridled, multi-site bone and nerve pain, severe nausea, uncontrolled tremors that assist insomnia - and the realisation that I will likely not enjoy the company of unborn grandchildren, will not be a companion to my partner till the end of his days, will not enjoy the privilege of being my children's constant benefactor or blesser until a more conventional lifespan has been attained do tend to curb my enthusiasm somewhat.
TheDrivenSnow -
I'm truly very sorry for what you're dealing with and that your enthusiasm is curbed, which is completely understandable and justified...My heart goes out to you...
The reason I have to fend off guilt about being happy/expressing happiness is because I know that many of us do not/can not share these feelings. Again, I'm so sorry about that...But the reason why I do sometimes share this on the board and I'm glad that Jerseyjazz did is because others, especially the newly dx'd, might be encouraged by this.
After I was diagnosed, believe me, I was surprised by how happy I continued to be, long before I found out that I would do well, physically. I assumed that I was supposed to feel unhappy...I actually had some people look at me with pity and worry that I was "in denial". I was not. Just as everyone's physical course is different so is their mental course, and the two don't necessarily correlate...
I do hope that folks who have difficulties that prevent them from being happy don't take it as insensitive that those of us who don't, talk about it. And I'd genuinely be interested in any feedback re: this because I do turn it over in my mind. I guess it's similar to folks who are doing very well - NED, etc. - sharing their good fortune?
Please take care, I wish you the best,
Lynn
Hello, Lynn.
Thank you for your response.
I hasten to add that I am not outwardly despondent in the least! The last thing I want is to drag others down with me: I am so not that person.
We are privileged to be able to connect with others here. (I am a technophobe, but I absolutely appreciate the ability of tech to bring people together!)
I am genuinely pleased for those who achieve favourable outcomes and whose journeys are eased. Among the reasons we congregate on HU is the support we derive from our peers and the support we are able to offer them. What an honour! And what a blessing...
Inside, I concede, there are regrets that weigh me down. The "why me?" question emerges from somewhere deep inside me from time to time, but the retort "why not me?" isn't far behind! It's a coping mechanism.
If we can't be honest here, what is the point of congregating and sharing?! I hope my earlier response will be viewed in that spirit. Those who are able to turn their stage IV cancer into a positive are fortunate indeed. I am not there (yet?)
Sending warm greetings!
I am so grateful for you to have shared this... I am happy too... but feel weird expressing it... but I am newly- well June dx’d... my dr told me these are the good years... so why not enjoy them and try not to focus on the scary pain and procedures which probably lie ahead? It was good to read that it is normal for some of us to feel happy. I feel so badly for others that may not have a partner to shoulder some of the burden... especially for my partner who is likely to have health issues when I am gone... but I don’t want to wreck the time we have now worrying about what I can’t change. But thank you for expressing it as I have felt like I was unusual.... as in strange. I have so much to be thankful for... I hiked 5 miles thru the beautiful bush as my final prep for a 3 day wilderness hike On the South Island of. NZ... hiking hut to hut from xmas eve thru Boxing Day... god willing!
Dear BettybucketsThank you for sharing that you are going on this wonderful life enhancing trek from point A to point B in the middle of Mother Nature's glories. It confirms the premise. Please paint the picture for us when you return. We can all live vicariously in the wilds of South Island. Good on you!
Frances
I echo what Lynnfish has written to you. I've looked at your beautiful picture and read some of your past posts and I see that you have been in a better place than you are in, now. I wish that I could give you real hugs and strokes but am instead sending air hugs and air strokes. I am also asking that you forgive me/us for speaking out in a way that you might have taken as insensitive. It was not meant in any mean way
What you have written is starkly painful to read and is humbling. Some of us with MBC are certainly more fortunate but, we are all on this post for very good reasons. The old adage stands. " A problem shared is a problem halved.". We all take from this post and we all give on this post. We are spiritual sisters and hold each other up.
XXX OOO
Hello, jersey-jazz . I'm humbled by the love and support behind your kind words and pleased that you are faring well.
Please do read my reply to Lynn immediately above your post to me. It will go some way to explaining my mindset.
Please also accept my affectionate greetings xXx
Dear DrivenSnow
Using TwthBC's apt word, we are all authentic. There is not room for anything else. By exposing our vulnerabilities and allowing our true feelings to be shared, we are confirming our trust in one another. It's all good.
I hope that tomorrow will be a better day for you and you won't hurt as much. Are you smiling?
XXX OOO
Wistfully, yes xXx
I love that saying a problem shared is a problem halved
Take care be safe Shelby
Hear! Hear!We find ourselves all in this together.
My family doesn't know the half of it and, for now, that is the way it is going to be. To me, the physical effects of the MBC, and there are plenty, are really overtaken by the mental and emotional atmosphere that I find myself enveloped by. The isolation causes/allows me to become very self-centered. So, I dwell on my MBC and alll that it means.
Well I woke up this morning and thought if I have another 15 years what would I do. I’m thinking...
Your message came at a good time. Thanks.
Dear Gwennie123
I am curious. What are you going to do? Yesterday, while cleaning out stash on a book shelf, I found some Jacks from when the grandkids were little. Guess what I occupied my next moments with.
I for one swing between both moods there are days I feel like Drivensnow and there are days I have an inner peace and a smile. Appreciating all that I do have and had. We all have a finite time and we must make a decision in where we want our thoughts to be. I can wonder off into very dark placesbut look for the light hope and peace.
You bring up a vey good point. We make the decision how we are living life. I, like you, do go from one mood to the other but am able to bring it back to a very good place and feel lucky although sometimes guilty. Some of our group are in so much encompassing pain, like DrivenSnow, that the decision making power is taken away.
I’m sorry for not taking that into consideration and truly empathize we those in a lot of pain. I know these are the hardest times and if one is still of this world we have get through it.
Yep but can make one a tad reckless I am discovering too. But who cares! 😁
Every since I have put a DNR bracelet on (chronic illness including cancer) I have felt this freedom. It is difficult to describe but my timidity has decreased and appreciation for moments has increased. I cannot control this world. I continue to work as I can to contribute to justice sharing as I can.
I realize, however, that (for me) this whole health thing feels like a crap shoot.. I do my best, but it is in this moment I am connected to everyone. A wise person told me "I hope you are happy each day, remembering of course that happiness alone is not what we are here for".
I am more content than I have ever been: Noticing of Beauty in small things, More aware of the community of suffering and solace too. It is ok. I am ok.
With the DNR bracelet on, I am reminded to live with what is significant. What is significant can be seeing a sunset, or being vulnerable with a friend, or memories of cherished moments, and those memories from which I am freed with perspective and/or forgiveness. I like learning this freedom of Letting Go and finding more emotional sobriety.
Life is hard.. feels so hard at times, but worth it and there is Beauty.
Dear Mary
Oh! Wow! Your words dig very deep and express feelings that we don't normally speak about.
Now that we are clear that we have a circumscribed time in this life, we are free to feel all this and to acknowledge all this. You speak of Beauty. Don't we all look for Beauty to feed our souls and to generate more beauty through our creativity? We were created. Therefore, all of us have seeds to create and a need to create.
We are almost done and it feels good to look about and see the beauty.
Thank you so much Jersey Jazz.. You helped
Jersey-Jazz (first off, I was raised in Princeton New Jersey -- so hey there "Jersey Girl"!) I LOOOVE your post. Yes, Yes, and YEEES. I have learned that my "struggles" are truly no more than every one else's -- that suffering is suffering; we are all suffering on this planet, in very different but Al in very similar ways, and I'd even say--in identical, ways. MBC has made me a more authentic, compassionate human. I have also learned the QUANTITY is truly incomparable--indeed, is meaningless in relation to QUALITY! 4 years of quality life is infinitely better than a lifetime of bitterness and selfishness. And I think the most interesting even beneficial truth I have learned from my diagnoses is that a death sentence hasn't perfected me -- that, that idea that now I "live like I'm dying". . . . taking every moment to appreciate everyone and everything I have to and love well at every turn --- is not possible because of my human-ness. Cancer has made me aware of my human-ness. For me, that means I have truly seen how God is right when he says our hearts are wicked above all things who can know it?. . . how much my heart needs a Savior. That even death can not make me love perfectly or use my time perfectly. My relationship with God through the love of Jesus Christ has grown real and I have experienced his awesome love that nothing can touch, not even death. For all this I'm grateful--I have experienced true gratitude and what that really feels like. But not every second of the day.
I have always been a happy person—I call it my biochemical imbalance! I even get teased about it! I don’t feel that I can take any credit for it though..... BUT these last few weeks of having MBC have been a little challenging....shortness of breath, lack of appetite (I LOVE to eat!)...but I’m feeling more myself these last couple of days, and more aligned again with what you are saying....it IS a good way to go when it’s pain free....I love having the time and feel very fortunate in generally having the wherewithal to try to do what I want as much as I can, love having time with family and friends, and love the new appreciation for beauty and humor. It has also given me lots of time to look back over my life, which has been a very very fortunate one, and remember the many good times I’ve had, and the wonderful family and friends I’ve shared them with. I truly believe that if I were to die to tomorrow I would die an extraordinarily lucky woman. Thanks for getting us to think about this!
DearTopood
You are welcome, I'm sure! You express yourself so clearly.
We have all these emotions bubbling up within us .and it doesn't it feel good to take them out and shake them up?
Amen to you, my fellow Jersey Girl!
You are teaching us through your words. It's interesting that you use the word, "authentic' . We of the MBC tribe know that we don't have time to be anything but authentic. We don't want to waste our time being anything other than that. That gets rid of the quantity and concentrates and distills the quality of our life towards fulfillment.
We are the lucky ones. We didn't die suddenly without any time to say good bye the way we would choose to. We have the time to put our house in order.and to do what some of us are privileged to be doing now; to enjoy our full life, despite everything.
Update from Jersey Jazz: I will not be going to Maryland because of the terrible increase of the virus.
Jersey Jazz
I am sorry that you will not be going to Maryland, but grateful to read that you will keep yourself safer, and thereby keep those safer, who would need to care for us.. You are one amazing woman.. Grateful
Dear Mary
That is sweet of you to write that.
Cousin Joe was so dear to me. He was the last first cousin and the best. Believe me, I am staying away from the funeral in Maryland not for my safety but because my presence might have troubled others in the family. If my presence wouldn't have impacted others, I would be driving down there tomorrow and staying in a hotel for two nights to be with good family and to say goodbye to my Cousin Joe.
Thinking of you today as you have chosen for others to not attend the goodbye gathering for your Cousin Joe.. Such difficult days. Respecting, admiring you with your decision... and feeling for you in your loss.
Jersey-jazz
I read your post several days ago and I’ve been thinking about it since then. I had a wild week of life things and had a melt down of anger to tears— felt much better after.
I agree with your premise of being FREE-er now than pre- MBC. It is hard to explain it to family and friends, who are grieving in their own ways.. yet, it is true the freedom is in my own mind— an ability to hone in on priorities and joy of the moment Now— like I never had.
I listened to Anita Moorjani’s book, Dying to be Me- recently and she had a near death experience and chose to come back to teach others about self love. She talks about fear and love being the most powerful emotions for our physical bodies.
Thinking of the fear/love frame has also helped me to have compassion for myself and approach life from a point of love— and letting go of fear— of the disease— length of life— my family— all the normal cancer fears. Thinking of Love and trying to Love where I am — has been a game changer for me. Some days are easier than others....
Thank you for the thought- provoking post... I’m still thinking about it.
Cindi
Cindi - I love what you are saying. I'm going to order that, book, too... :).
Be well,
Lynn
I completely agree with what you’ve said. I feel the same. MBC has given me a new perspective and it is entirely freeing. I don’t have to worry about the future I can just be entirely present in now. That is liberating.
Thank you for posting this! I can’t say that I’m completely happy but I am content and relatively pain-free. I am sad that I had to retire from my career 17 years earlier than I anticipated but grateful that I am receiving my full pension and and don’t have to worry about money. I LOVE spending time with my school age daughters and pursuing hobbies that interest me. This disease has caused me to really prioritize what is important and for that I am grateful.
I just found this thread and it has validated my thoughts and feelings of happiness, and therefore a bit of guilt, that I have felt since my dx 2 years ago. The timing is interesting because you posted about the same time I was dx’d but I didn’t see it then. Thanks for expressing what could be considered a complicated topic, and thank you to all who responded as well. You all have warmed my heart this morning. I adore all of you folks in this forum. You are a wonderful touch stone, no matter what phase of this disease we are experiencing. Gonna go dance a bit!
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